Sunday, December 24, 2017

Progressive Isolation...Christmas Eve alone

Well, writing a blog post on Christmas eve is a bit unconventional. I've certainly never spent a Christmas Eve home alone. The rest of my family is all at church services or family gatherings. It's a hard pill to swallow that the only way to stay safe is to stay home alone. The degree of suffering for attempting to attend any of those events is way too much.

Thanksgiving was a bit of a disaster, even though my mom's side of the family tried so hard to make me comfortable. Every little thing was planned. Everyone went to great lengths to de-scent themselves. There was no cooking done. No strongly scented foods. Not at all a traditional Thanksgiving meal. But I was having a full-fledged reaction before we even arrived. I reacted to my husband's body wash, which was unscented, but still problematic for me (probably the botanical oils in there--not really fragrance free!). I was in and out of consciousness on the car ride over. I collapsed in mom's driveway. I was basically carried into the house, where I took a Benadryl, and waited for the reaction to ease up while being almost completely passed out for nearly an hour. It was a rough start, and it just got worse. I started developing a severe migraine with the associated neurological symptoms as soon as more people arrived. I had to go upstairs to my safe bedroom, and stay there the remainder of the night. My facial pain reached a 9 that evening, along with vertigo, nausea, lack of balance, and weakness. I remained sick for at least a weak, while also being even more sensitized to other triggers.

So, that is how I've ended up alone for Christmas Eve. For Christmas day, we have new plans. Everyone will still de-scent as best as they can. The food will still not be cooked in the house, or strongly scented. But I will spend the whole time up in the bedroom. We will Skype as much as we can. We'll try to play a game. My hubby will bring my food and gifts upstairs to me. It should be safe. Fingers crossed!

The past couple of months have been very emotional for me. A lot of total breakdowns. And major emotional breakdowns are really hard on my body, too. They usually trigger migraines and insomnia.

I've developed reactions to new things, or just identified more triggers. It's hard to say.

-I react to the smell of even more foods. Pretty much anything seasoned is problematic. My husband ate a cold tuna sandwich, and I had to hide in the bedroom with my chest burning for 2 hours. I also developed bladder cramping and facial pain that night. Other symptoms continued for a few days.

-I reacted to the smell of old coffee grounds. They were 3 days old. I developed an instant migraine upon entering the apartment, facial pain level 8, vertigo, nausea, tingling body, severe light sensitivity, burning chest, my tongue felt swollen, slurred speech, and aphasia. It was nuts how severe the reaction was to an undetectable scent that I wasn't even aware was there. I stayed sick for days, but also had more exposures in the following days.

-Pharmacies have continued to make my life difficult by changing the manufacturer of my generic medications. I now have 3 Rx meds that I have identified a brand that I can tolerate and a brand that makes me incredibly sick. There is no real indication yet of what inactive ingredient I may be reacting to, besides red dyes. There are still some unknown culprits. The symptoms to the wrong brand of the same medication usually include: insomnia, diarrhea, itching, bladder pain, facial pain, headaches, low blood pressure, and GI bloating. They tend to pass in a few days, but it can take time to identify the cause and access the right brand again. I go to 3 different pharmacies currently to get my safe brands of meds. It requires a lot of phone calls each month to make sure the brand I need is ordered in time. It is a huge hassle, and a real challenge with brain fog.

-I'm still reacting to weather changes, especially barometric pressure changes. I don't just react with a migraine anymore. I frequently get a whole mast cell cascade of symptoms, with chest burning, nausea, swelling, vertigo, itching, insomnia, and more. This has been nearly constant the last couple of months.

-I've started reacting to the smell of rubber-backed doormats. I've only recently identified this as a problem, so we're still trying to find a good replacement. I suspect this smell has been bothering me for a long time, but I've only recently identified it. (I used to think it was gas of some sort.)

-If my sleep is interrupted, I'll be sick all day.

-We had our apartment's smoke alarm go off. The fire department came and identified a burning plastic pipe in the laundry room. Luckily, we were able to duct tape up our door, so nothing got inside. But that could have been disastrous.

-I barely, barely, burned some carrots in the microwave. The tiny hint of smoke created sent my head pain to a level 9, again, along with burning in my chest and abdominal pain.

-At this point, I react to being around anyone that doesn't lead an unscented life. So many scents hang around. I react to second hand exposures to fragrances. So if Gustavo comes home from his mom's house or the pharmacy, he has to change clothes, because the scent is now on him. If my mom comes home from a concert, she was around scented people and got hugged by scented people, so she is now scented. The other huge issue is laundry products. My sensitivity is so severe, probably because I am exposed to it most times that I step outside every day (laundry vent exhaust in our apartment complex). For the last 6 months, we have not been able to wash our laundry in our apartment's laundry machines. Even though we use unscented products, the machines usually have scented products in them. So the residue comes off onto our clothing, making it unsafe. So, I assume this is a problem for anyone that has a shared machine and anyone that even occasionally uses scented products in the laundry. This particular issue has made the isolation so severe. Because even if a person follows a perfect unscented protocol, they will still smell like Tide or Gain or Bounty to me, and I will still react severely. Highlighting this so those that are skimming can better understand why I can't have visitors anymore.

With all of these reactions, I haven't trialed new medicines, and I haven't seen any new doctors. I just needed a break from that. But not much of a break, because I'm still constantly reacting to things. My "good days" have been decreased to a couple of good hours a week. Daily symptoms include headaches, facial pain, heart rate and blood pressure changes, severe brain fog, random eye abrasions upon waking, unpredictable insomnia, and GI problems. I am so grateful I no longer have pain level 7 or above on an average day. And I am so grateful that I get enough sleep more nights than not. I truly believe the reason this has improved is my attempted avoidance of all triggers, especially environmental ones. But daily symptoms are still severe enough that I dread every day.

I tend to suffer from brain fog most of the time, to the point that I feel mostly numb or I'm vaguely aware of depression. But whenever I am feeling more clear-headed, I start to feel very emotional, and end up crying uncontrollably.

It's been a year and a half so far that I have been progressively housebound. Now, I can be around 3 safe people and I have 2 safe environments. (Technically, there are a few more safe people, but they live in Boston!) I still have about 12 tolerable foods. But I am very lucky I still have those things. But I continue to decline and become more sensitive. It is crushing my spirit. I am so grateful for what I have, but frequently mourn for all I have lost and continue to lose. And I fear for my future.

I have a few other random thoughts. It is amazing how much lack of understanding and disbelief from doctors can damage your psyche. I have never been the same since that started. Certain incidents still flashback in my mind, 15-20 years later. And I still have a wariness/hostility toward a lot of doctors. I try not to. But this whole nightmare of MCAS progressing and not being diagnosed for years, and still not finding viable treatment has made it all so much worse.

I also have some ideas to share with anyone that has EDS and POTS, but not yet MCAS. Or has mild MCAS or suspected MCAS. Or anyone newly diagnosed with MCAS. Things I wish I had known:

Get ready to be your own lab rat. No one will have the answers for you. Your body's reactions will guide you to your safer lifestyle, if you pay attention for long enough. Of course, doctors can help with trialing medications and some general lifestyle recommendations. But most of us have to figure out the how to live part on our own. What to eat, which medicines (including the manufacturer) have more positives than negatives, what environmental changes would be helpful. Support groups are soooo helpful for getting ideas of what to try or what might be hurting you. But only you can figure out what will work for you.

A good place to start is limiting the number of chemicals and ingredients you are exposed to in daily life. In food, medication, personal products, and cleaning products. Keep your routine as simple as possible. Fragrance free is a great place to start. Natural and organic are not always safer with mast cells. A low histamine diet is another good place to start, but again, you'll have to learn for yourself what actually helps and hurts you. It could be salicylates or oxylates or FODMAPS or dairy or gluten, or anything really. (E.g. You may need to eat mostly meat or you may never be able to eat meat.)

Also, don't waste years with doctors that aren't well-informed about MCAS. They will just be lost years where you continue to progress.

I would also try to avoid trauma and surgery as much as anyone can. Nothing has progressed my disease like surgeries and inpatient stays. It's hard to say if I regret surgery, because the fact is, my life is no longer in danger from a destabilized skull/spine. But I certainly wish I could have been well fused 15 years ago when I had my first brain surgery, instead of it taking multiple traumatic surgeries over the course of a decade. Who knows what shape I would be in now?

Finally, it can be hard to read about so many miraculous recoveries, and then what worked for someone else didn't work for you. Most people will improve. Some very quickly, others in time. Some will be able to live close to a normal life. Others will become housebound. We don't all find the miracle combination that gives us some version of our life back. But we have to keep trying.

Well, I don't know what the point of writing was today. Other than loneliness, and needing to get out some thoughts that have been wandering around my oxygen-deprived brain. It's hard to wish for a Merry Christmas. The fact is, many will have a very merry Christmas. Others will still be sick and in pain and severely limited in what they can do. It is hard to see people celebrating with their families, with their children, making cookies, doing all the things I used to look forward to every year. Tonight, I am watching Netflix alone, like I do most of the time. Hopefully, letting out the negativity tonight will make me less likely to be cranky tomorrow.

I am very grateful that some people still care about me, even though I can't see them. I am grateful that I have a few people that have changed their lifestyles completely so that I don't have to be alone all the time. I am so grateful for my little Wilma. I think she is an irreplaceable companion (that lets me sleep until noon without making a peep and likes to be a couch potato all day with me...and is also hypoallergenic!). I am grateful for sleep, although not so much when it gives me corneal abrasions, like today. I often wish I just didn't exist anymore. But since I have to exist, I am glad I am not all alone yet.

Thank you for reading and caring.

Tuesday, October 31, 2017

The hits just keep coming!

Well, it's been almost 2 months. I don't have much revolutionary to update. But I will anyway to help me keep track of my progression. I have had a few less symptomatic days, which were inevitably followed by major exposures. This disease does not give me a break. I've also developed a few new sensitivities along the way. In my brain-fogged state, it's really hard to organize my thoughts. So, I'm just going to share the notes from my symptom journal. The journal helps me to pick out the major triggers and pinpoint any changes. I highlight possible triggers. I'll try to summarize at the end, if you feel like skipping.

September 5-7

Mostly average days with a lot of GI troubles. Chest burning, random bouts of anxiety, major abdominal bloating, acid reflux, food reflux, fullness, headache, nausea.

September 7

I got the correct brand of Omeprazole, but it was an older formulation with more Red food dye #40 in it. I developed manic energy in the evening, irritability, pressured speech, and insomnia.

September 8

I woke up after four hours of sleep with a pounding heart, unable to sleep anymore. I had diarrhea and more manic energy in the evening.

September 9

I slept about 5 hours. I had burning chest, itching, headache, facial pain, sinusitis, and flu-like symptoms. I was then exposed to the smell of barbecue smoke outside. I instantly developed level 7 facial pain, chest burning, and random crying spells.

September 10

I finally slept well. But suffered fatigue, facial pain, sinus pressure, and itching. After dinner, I felt burning pain in my chest/back/arms. I had an episode of reduced consciousness with heart fluttering and paralysis. I also developed facial pain and vertigo.

September 11-13

I had widespread burning sensation, facial pain, hot face and eyes, and agitation at times.

September 14

Thanks to the generosity of a friend, I was able to get the correct brand of Omeprazole (Glenmark). The dose was only half my dose, but the formula was very similar to my safe version. This pill had no red dye. I had some burning, agitation, and lethargy.

September 15

I was feeling more normal, with minimal symptoms! It was such a relief. But of course, short lived.

September 16

I was very daring, and tried to attend an outdoor birthday party for my nephew. I suffered severely for it. I was exposed to scents while I was there, even though it was outside. But I also got 3 mosquito bites while I was outside. That day, I developed severe facial pain and vertigo, but I was able to sleep.

September 17

The real reaction to the mosquito bites started. My bites became very swollen and severely itchy, and I developed some reactive hives. The hives became indistinguishable to the bites, and were found mostly symmetrically on my body to the mosquito bites. That evening, I developed severe agitation. I then got two different migraines with visual auras. I had insomnia, diarrhea, and severe itching all night long. I slept for 2-3 hours at a time with Benadryl and ice packs strapped to my legs over the worst of the itching.
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September 18

As if the mosquito reaction wasn't enough, I started developing a sore throat with a fever in the evening (I had been around a few people with colds, so of course, I got it.) With the fever, I was only able to sleep from 8:00 AM to 11:00 AM, once the fever came down. Of course, I can't medicate for a fever in any way, so there was no way to get relief until the fever came down on its own. And any infection at all flares up mast cells majorly.

September 19

I had a very sore throat, sinus pressure and pain, excess mucus, body pain, lethargy, time spent passed out. My fever was up to 100.5. Again, I only slept from 8:00 AM to 11:00 AM. All night, I had severe itching, heart pounding/racing, fever, and I needed ice packs strapped to my legs at all times. I went downstairs every hour or two to get new ice packs. I also had frequent urination all night. I took extra Zyrtec and Benadryl, but still couldn't sleep. So frustrating!

September 20

After the lack of sleep, and with an active infection and mast cell reaction, I was in absolute misery. Body pain, lethargy, burning eyes, sinus pain, chills/hot flushes, sore throat, weakness. I still had very itchy bites and hives that had become swollen, hard, red, and very hot. The whole backs of my calves were a disaster. I had severe facial pain and headache, nausea, and lack of appetite. My fever went up again in the evening. I also developed a migraine.

September 21

My fever finally eased off. I was able to sleep at night and function during the day. I still had sinus pressure and itching, but I was much more content now that I'd slept.

September 22

I slept well again, but developed a migraine in the morning. I then had to head to a doctor's appointment (allergist). The car ride and the foreign environment made my migraine shoot up to a level 8 pain. I had burning chest and anxiety after dinner. I had major bloating in the evening. But I was able to sleep.

September 23

Migraine and burning persisted. Cold symptoms persisted. Itching from mosquito bites and hives had finally eased to a tolerable level.

September 24

Migraine was lessening. Some episodes of burning. Cold symptoms persisted.

September 25

Shorter episodes of burning. Mild facial pain. Cold symptoms persisted. That night, I started a new brand of generic Ambien.

September 26

I did not sleep. I developed severe fatigue, body pain, facial pain, headache, itching, nausea, lack of balance, irritability. There was also an impending major change in the weather. My cold and burning persisted.

September 27

I had to continue with the new Ambien. I barely slept. I had a pounding heart most of the night. I felt on edge, anxious, shaky/jittery, diarrhea, burning face, burning chest, facial pain, diarrhea,  tachycardia, and got a rash on my face. This was a classic mast cell reaction to the Ambien. I had to put in an urgent call to local pharmacies and my psychiatrist to get the medication issue resolved. Thankfully, I was able to get my safe brand of Ambien picked up that night, although insurance wouldn't cover it at the pharmacy that was able to obtain it.

September 28

I slept incredibly well back on my normal Ambien. I had short episodes of burning that were pretty mild. But I got another corneal abrasion upon waking.

September 29

I got a corneal abrasion upon waking in the other eye. There was more mild burning, lethargy, and body pain.

September 30

I was exposed to the smell of hot sauce. I was in another room, but the smell permeated. I had an immediate reaction as if there were smoke. I had wheezing, burning, and vertigo. I had an itchy and restless night last night.

October 1

I had very low blood pressure in the morning, so it was very hard to get up. I had more severe burning, anxiety, and brain fog all day.

October 2

I had another itchy, restless night with low blood pressure in the morning. (80/45) I had random bouts of anxiety and burning. I seemed to be reacting to all food and medication that day.

October 3

Still reacting to the hot sauce. I awoke with pounding heart and low blood pressure again. I had headache/facial pain all day.

October 5

I had times with reduced consciousness. I took my Omeprazole 3 hours late that day. I have no idea if it could have caused all of my symptoms. I had heartburn all day, a bad choking spell, itching, burning eyes, red, swollen eyelids, lethargy, and aching. I also somehow injured my left wrist that day, and ended up needing to brace it for a few weeks. (I already brace my right wrist daily.)

October 6

There were storms and a large drop in barometric pressure. I had severe facial pain all day.

October 7

I had fatigue, bloating, itchy eyes and nose and skin on abdomen. My vision was going in and out of focus. I had a prolonged episode of reduced consciousness. I had evening chest burning. I was awake until 3 AM. I required Benadryl for full-body itching at 2:30 and 6:30 AM.

October 8

I had a pretty normal day, except for some itching. Overnight, I had itching again, and needed Benadryl at 1:00 and 6:00 AM.

October 9

I was generally really out of it. Mild chest burning and bladder pain. I had an episode of overheating followed by reduced consciousness. (Is it really October, and we need the air conditioner?) I then developed a stroke-like migraine. My right eye was drooping. I had headache and nausea, as well as bladder pain. When I developed extreme light sensitivity, I knew I had developed a hemiplegic migraine. I had another itchy night, but I slept well.

October 10

I had bloating and swelling of the eyes and upper lip. I had some pretty bad heartburn. I developed severe fatigue and brain fog. I was just staring for hours. Two hours after dinner, I developed heart palpitations and burning chest. The heartburn and reflux kept me up late that night.

October 11

I slept late, but well without Benadryl. However, I spent most of the day crying. It was a stormy day. I developed severe facial pain.

October 12

I slept late, but well without Benadryl again. I spent more time crying, and it was really overcast outside, so the facial pain was still pretty bad. I had heartburn, too.

October 13

I had a new reaction that day. I had a brief reaction to the smell of "natural blueberry flavoring" in my husband's protein bar. I developed severe headache and vertigo. Luckily, it eased off once we got rid of the scent. But, that evening, I went into Trader Joe's, and they had put their cinnamon brooms out for the season. (They will be there for the next 3 months.) I immediately left, but developed wheezing, bronchospasms, itchy chest, mucus, instant headache and vertigo, nausea, and intense facial pain.

October 14

I slept well, but there were bad storms again this day. I had severe facial pain and headache, nausea, malaise, and bladder pain, followed by a brief manic time before bed.

October 15

I slept poorly. I had severe malaise, nausea, fatigue, moderate headache and facial pain, and cold painful feet. In the evening, I had severe chest burning. It seemed that I can no longer tolerate my Thermotabs. They are buffered salt tablets. I take 8-10 of them per day with plenty of water to treat my POTS symptoms, but I have suspected that they have been contributing to my burning chest. It is either just the saltiness with my lower dose of Omeprazole, or it is a reaction to the fillers. Either way, I was pretty sure I couldn't take them anymore. My life will be much more difficult without them.

I also developed bad muscle spasms in my neck, causing a headache, as well as bladder pain.

This day was also very difficult on me emotionally, because I missed out on two family gatherings. It was just really sad.

October 16

I had headache, nausea, chest burning, and widespread body pain (especially knees, wrists, pelvis, and muscles).

October 17

I awoke to another corneal abrasion. My eye was swollen, teary, and red, and I got a runny nose from it. I had to wear my glasses all day, which gave me a really bad headache all day.

October 18

Headache, dizziness, fatigue, brain fog. Short episode of a swollen, red upper lip. I had trouble sleeping that night.

October 19

Major fatigue and an episode with hot eyes and head (temperature 99.2). I had a decent evening. I got some exercise in that evening. My POTS has been much worse without Thermotabs.

October 20

I went on our usual grocery trip. (I sit in the car while Gustavo goes into Target. I try to go with into the grocery store.) There were no major exposures, but the car ride felt really rough on me. I developed nausea, body tingling, and a level 8 migraine. I may be done with grocery trips, which have been my only trip out of my safe spaces.

October 21

My migraine continued at a level 6, going to 7 or 8 if I move around. I had a puffy upper lip and burning eyes. Migraine was an 8 in the evening. I also had bladder pain and increased pain in my feet and knees.

October 22

I had a terrible sleep. There was rain all night and day. I woke after 4 hours of sleep with low blood pressure and pounding heart. (80/40) My migraine persisted, along with bladder pain. At 2:30, the smell of a neighbor's cooking seeped into my apartment. Luckily, the weather still allowed me to have the window wide open with the fan blowing fresh air in. And luckily, the outdoor air was fresh. But it was too late. My migraine pain was a level 8 in the dark silence. Pain in my teeth and bladder. I developed a mild fever again, as well as nausea.

October 23

I slept great! The weather was better, and my migraine was improved. Unfortunately, there was a major barometric pressure drop again. A new migraine was triggered at 8:15 PM. It was immediately after a very brief exposure to some tainted laundry detergent. I literally only got one inhalation of the laundry scent, but ended up with pain level 8. It was technically unscented detergent, but it had been tainted with laundry scent.

October 24

I slept well and had an okay day. I still had a low level migraine. But I exercised again at night. I ended up with a lot of body pain (shoulder, wrists, knees, feet, SI joint). I had heartburn at bedtime and midnight body itching.

October 25

My migraine switched to the other side after one inhalation of barbecue smoke outside. Pain was a level 7. I had abdominal bloating and pain, as well as heartburn.

October 26

The migraine persisted, causing postural headache and nausea. In the evening, I returned home to where the heat had been run for the first time. It wasn't on anymore, but it still irritated my system. I had chest burning, headache, nausea, itching, and bronchospasms.

October 27

I had overnight itching, restless sleep, and woke up uneasy. I had nausea and bladder pain. I had to go to a doctor's appointment (new PCP). There were no major smells in the office, but it was still a foreign environment for my system. When I got home from the appointment, I seemed to be manic for the rest of the day. I was also having tachycardia, and I was really shaky. I also had severe bladder pain/urgency. It felt just like a UTI, needing to urinate frequently. I also had a burning chest in the evening. I remained in a manic state until late at night (early morning, really).

October 28

I had a headache in my teeth this day. I had heartburn and milder bladder pain/urgency. In the evening, I felt well enough to exercise.

October 29

I had mild heartburn and nausea, as well as facial pressure and excess mucus. I was having bladder retention, too.

October 30

I had to go to another doctor's office (psychiatrist). There were very strong scent exposures. I wore my respirator. But I also kept my winter coat on the whole time. I believe that covering my skin prevented so much absorption of the scent, which lessened the severity of my reaction. I still suffered from pain in face, cough, nausea, vertigo, full body pain and tingling, burning in torso, severe fatigue, pounding heart, bladder pain, excess mucus, and tinnitus. It sounds like a lot, but it honestly wasn't as bad as I expected. But seriously, this office at Lutheran General Hospital is absolutely toxic. All sorts of perfumes and air fresheners and caustic cleansers.

October 31

Today, I had a headache and facial pain, level 6. I also had fluttering heart and fatigue as well as bladder pain. Chest burning and worsening facial pain into the evening.

Soooooo.....these months have been full of struggles. The change of seasons brings the migraines to the forefront every time. Multiple medicine formulation changes have really shaken me up and caused me no end of suffering. The reaction to Thermotabs has been especially problematic, because I can no longer manage my POTS at all. The upper respiratory infection and the mosquito bites caused me two weeks of pure misery. Every trip out of my homes has caused me more trouble. Bladder pain has become a much more prominent symptom. I used to always feel the reaction in my face first, but now, sometimes my bladder cries out first. It is not unusual for mast cell patients to suffer from symptoms of cystitis. The lining of the bladder is actually full of mast cells. And mast cell degranulation releases mediators into the urine (this is why it frequently shows up on urine testing). Anyway, inflammation of the bladder lining that feels like a UTI with cramping, pain, and frequent voiding is a common symptom.

Neurological reactions are always frustrating. I know that plenty of people are misdiagnosed with Bipolar Disorder, and later shown to have complete relief of symptoms with a mast cell protocol. I completely understand how that happens, with my reactive bouts of crying, mania, or panic. I am frustrated that even my good days are pretty symptomatic. I believe if I could go long enough without a trigger, I could get back to baseline. But I haven't really been there in many months. You can't exactly control the weather. And you cannot control which manufacturer the pharmacy uses in any given month. You can try, but you will fail!

I'm also really distressed that a single whiff of a scent has been triggering severe reactions. It used to be that I was exposed to something, and if I fled, I would be okay. But lately, the first inhalation of an irritant is enough to ruin my day.

I have tried exercising whenever I am able (maybe twice a week). I'm only doing a few PT moves that should be safe. But I always end up with increased joint pain the next day, making it hard to function that day. I will keep trying though.

Also, I think it is really notable that my psychiatrist's office was really strongly scented, and I had a less severe reaction than expected. I really attribute it to my multiple layers and long winter coat that I didn't remove, along with my respirator. (I think my husband is right. The only way I could exist in the world is in a scuba suit!) They do make cheap Hazmat suits. I don't know how I would wear it without looking crazier than I already do. But at the very least, keeping my skin well covered may protect me from the most severe reactions.

I could try to get all of my medications at the compounding pharmacy, but it would be so expensive. Currently, all of my prescriptions are free with our new, expensive insurance. So, paying ~$50 a month for each month would be quite a hit. Also, I still don't know of a safe capsule or a safe filler.

And I know this should be no big deal, but I have been on a slightly higher dose (1/4 of a pill) of my Remeron since June. It has alleviated the worst of my depression. But it has the unfortunate side effect of weight gain. My diet certainly hasn't changed. My portion sizes may even be a little less, since I've had GI trouble and reflux. And I have gained 9 pounds. I hate it. It's just hard to accept, but it is a choice I have to make for my emotional well-being. There is a whole lot for me to deal with emotionally. It is the only medicine I can take for it, since I can't raise my serotonin levels. And my psychiatrist would like me on a slightly higher dose (another 1/4 of a pill). My PCP says I shouldn't lose any weight, because I am at the bottom of the healthy BMI. But it's still hard to accept 9 pounds of extra fat on your body.

Also, so far, we haven't run the heat while I'm home at our apartment. We haven't needed to yet. (30 degrees outside, 72 degrees inside) But at some point, I will have to acclimate to it, which I'm pretty sure never happened last year. So that will be another trigger to cope with.

I don't have any doctor's appointments scheduled, but I'm sure they'll come up. I am supposed to schedule with the next MCAS specialist. She is an integrative endocrinologist. She does not take insurance. But she is local (downtown) and I have heard good reviews from other patients. She has a special interest in mast cell diseases, because she identified her own MCAS. (website: She has been able to manage it well enough to run a medical practice. I believe she will have some excellent input for me. I honestly feel like I already know everything to try. I just don't know what to try next. I'm stalled out after failing so many treatments and progressing to the point that I react to almost everything. I haven't successfully tried a new treatment in a long time. I believe I need to retrial Cromolyn Sodium. I also need to try Dihydroquercetin, which is a supplement. But I am pretty terrified to do it. There are so many unavoidable triggers, it is difficult to add more risks to my life. But, I will be scheduling the appointment sometime.

Thank you for reading tonight's long and maybe pointless update. I am still so grateful for my safe people and my safe spaces. I would simply give up without them.

Tuesday, September 5, 2017

When will this downward spiral stop?

Well, I have not taken good notes on my symptoms and medication trials this month. Things haven't gone well, so I've had a harder time caring to record everything.

It's mostly a blur of symptoms. I did try the compounded Zantac without the capsule and the compounded Ketotifen without the capsule. Unfortunately, I reacted poorly to them. Especially Ketotifen. I took half of the smallest dose, and suffered from the burning in my torso, followed by insomnia with low blood pressure and pounding heart. I could still try the Zantac again sometime, because I only really noticed digestive symptoms, but I am having those every day anyway, so it may have been fine. I definitely react to the gelatin capsule from the compounding pharmacy, but I don't react to all gelatin (Zyrtec Liquid Gels and Benadryl Liquid Gels are considered safe meds for me.) I understand that gelatin for capsules comes from beef or pork, so maybe I tolerate one but not the other. And even scarier, maybe I won't tolerate them for long.

It also may be possible to have these medications compounded in pure water, and titrate the dose up much more gradually.

The problem is, I would have to get back to baseline first, and I am currently in a flare, where I am reacting most of the time. I don't tolerate my normal food or medicine or environment.

This flare started with a trip to the Optometrist to order a new pair of glasses. I have been putting this trip off for a couple of years, because I figured it would be problematic. I already had the prescription, but I needed to order the new glasses. Unfortunately, I couldn't just order online, because I needed a specialty brand, Silhouettes. These particular rimless, titanium glasses are the only ones that don't give me a headache (although I still prefer no glasses for head pain). With my frequent eye injuries, decent glasses with my current prescription became a necessity. So, I bit the bullet and went in a store that could make these particular glasses. The scent was suffocating in the tiny store. I wore my mask the whole time, but it honestly doesn't matter anymore.

Before the trip to the store, I had actually had 2 good days. I considered myself back at baseline. My digestion still sucked (reflux, bloating, and irregularity), but overall, I was doing okay. Then, on August 26, I went in the store. We took 10-15 minutes to complete the order. I had no immediate symptoms, which was strange, but not too strange. Delayed and prolonged reactions are becoming more common for me. The pain in my face started soon. I did the nasal irrigation to try to rinse out any residual fragrance from my sinuses. Maybe it helped, because the facial pain didn't get worse than a 7.

However, the rest of the symptoms have been hell. I started developing weird, manic energy, followed by insomnia until 8:00 AM (which is pretty damn impressive with the amount of sedatives I take.) I developed itching and hives on one foot and my face.

The next day, I developed severe fatigue, malaise, nausea, and body pain. I was unable to do anything all day. I developed burning pain in my chest and upper arms that evening. Facial pain worsened again. I also got bad abdominal pain.

The following days after the exposure, the burning chest, body pain, headache, nausea, bloating, and facial pain persisted, coming in waves throughout the day.

I also had a couple more days that week with weird, manic energy and panic at times. Benadryl calmed the mania, so we know it wasn't psychiatric in nature, but mast cell driven.

Today, 11 days after the exposure, my mast cells are still overreacting to everything. I get chest burning, small bouts of anxiety, major bloating, reflux, fullness, headache, and nausea a lot of the time. My sleep is mostly back to normal, and I haven't felt manic. But I am no where near normal. Until the burning goes away, I won't feel anywhere near normal.

This burning is such a severe symptom that it has caused me to avoid all pain medications in all circumstances. No matter how bad my pain, I know the burning would be worse than the relief I would get from the medicine. There are a bunch of other medicines I'm also avoiding for the same reason.

So, besides all of this junk, I've been dealing with a new health insurance, which started September 1. I have to arrange to transfer some prescriptions to a new pharmacy, since CVS is no longer covered. Also, they are, of course, going to be 2-3 weeks late in mailing us our new cards. So that has been an annoyance.

But even more frustrating and scary has been that Walgreens informed me that the only manufacturer of Omeprazole that I tolerate will be discontinuing it. My supply officially will run out on 9/25. And I have reacted to all other PPIs that I have tried. It may be the iron that is added to most of them that I am reacting to. But the crazy thing is, I contacted the manufacturer directly to confirm, and they do not seem to be discontinuing this drug. So Walgreens lied to me. My life is absolute misery without it. But I can't figure out how to obtain it. The pharmaceutical company informed me that they contract with Walmart. So I could try to contact them and see if they are able to order this specific manufacturer. But for that, I would need a prescription, and none of my doctors are helping me right now. I will see my MCAS doctor on the 22nd. But that is cutting it really close, and she is not returning my call, which is weird and frustrating. I don't actually have a PCP right now. It would be excellent to have one, especially if I could contact them electronically. But going in offices is still a major trigger for me, so I keep putting it off and spreading out only the most necessary appointments as much as possible.

I could also try to get a PPI compounded, although I did not have much success with the last compounded medicine I tried. But obviously, if I react to all but one of this medicine, it is some filler(s) that I am reacting to, not the drug itself. So compounding makes sense, because they can leave out fillers. It's much, much more expensive though. And I would still need a paper prescription first.

I honestly don't know what to do about this, and I know the closer I get to September 25, the more anxious I will get about running out. I am so scared about it. Why do they have to use so many fillers in everything? And why do I have to react to every building I go in? Why does it have to be so hard all the time?

I've known that I had MCAS for a long time. I've been dealing with illness for the majority of my life. But now that I have the MCAS diagnosis, it was supposed to get easier. So many people just start Zyrtec/Zantac/Singulair/Cromolyn and feel 1000 times better. So far, I only tolerate Zyrtec and Benadryl (only liquid gel form). But that only manages a small number of symptoms. My itching is so much better! But I am still homebound, reacting every day. Prolonged, overlapping reactions. Never getting a break. And I suffer severe untreated pain most days, which has traumatized me. Every time I leave my home, I end up in severe pain for at least several days, as well as becoming more reactive for a week or more, which has also traumatized me. So I am more terrified to leave the house each time. Most of my time is spent alone, suffering. I don't think I will learn to cope with this until I can find something that helps me feel better. I'm not asking for much. Just one level higher on the quality of life scale would make a huge difference. I know I'll never be able to eat what I want, exercise how I want, go where I want, be around everyone I want to see, etc. Just one degree less suffering would be enough. To be able to spend time with my family that I love and haven't seen in over a year due to scent reactions. To maybe visit with friends on occasion or attend an in-person support group. To just not be terrified of every trip out of the house making me sicker. I just need a little help.

Unfortunately, a few of my treatment possibilities are pretty much gone. Brand name Gastrocrom is not covered by my new insurance, so I won't get to try it ($4,000 for a month supply). I would need to try the generic version again, this time titrating as gradually as possible. Ketotifen is pretty much off the table (I have a $100 bottle just sitting here that I cannot take.). And Dr. Afrin has become pretty much a pipe dream. He is creating his own mast cell clinic, but it will be considered an integrative clinic and out of network. The first two appointments with him are $2000 each, in New York. Travel on its own is pretty much out of the question. But the cost of visits is just so out of reach for any average human.

So, I can keep seeing the doctor that knew enough to diagnose me. She is nearby. She is hesitantly willing to help. But she doesn't know what to try next, and really, neither do I.

The only real things left are Xolair and Gleevec. Xolair is an antibody used to decrease allergic reactions. But it is usually only used in patients with high IgE levels, and mine are fine. (Mast cell reactions are not allergic reactions.) There is some evidence of it working in mast cell patients with normal IgE levels, for unknown reasons, but it is a high-risk medicine. It has a high risk of making me worse rather than better. Gleevec is a chemo drug that has some evidence of helping some MCAS patients. Of course, it is a high risk drug, too.

And I'm pretty sure my current doctor wouldn't approve either of these for me.

The only real treatment seems to be trigger avoidance. But honestly, my life is so meaningless like this. I would give anything to get back to baseline. But once I do, I will start to wonder at the purpose of a life like this. A life where I can't see almost anyone or go almost anywhere. A life where I have good reason to be afraid of everyone and everything around me. A life where I mostly suffer alone for leaving the house or trying a new medication. But I think it's better than the alternative.

Any sane person, if going to Target left them with level 9 pain for 5 days, as well as a host of other symptoms, they would never step foot in Target again. Self-preservation is not a neurosis. It is sanity.

Sorry to be blathering, but this prescribed life is so tiresome and meaningless. I can only sit in one chair with the right cushion to prevent SI dislocations. I can only sleep on a sleep number bed on a low setting with 4 mattress toppers to prevent shoulder subluxations/nerve damage. I can only drink lukewarm water. I cannot eat fruit, dairy, almost all meat, and honestly most other food. I have a very short list of supposedly safe foods that are only possibly safe between room and body temperature (I literally have to warm up my almond milk to room temperature to eat cereal, or suffer the burning in my chest afterward from the cold). My air has to be free of scents/harmful chemicals and purified constantly. I can wear one pair of shoes with my $500 orthotics that really need to be replaced, and I still suffer from foot and knee pain whenever I'm on my feet. My body has a very limited number of steps and time upright each day. I rarely have the cognitive ability to have a conversation before 8:00 PM. I spend most of my awake time playing mindless games on my iPad, because that's all I'm capable of, and it passes the time. I mostly view life as something I want to get over with. I hate that I am now afraid of crying or laughing to much, because it also triggers a reaction. I am an emotional person, especially lately, so this is hard to avoid, but I have to try.

I am terrified of the future. I am terrified of the progression of my disease. I am terrified of suffering any future trauma (of which there will be plenty) that will worsen my disease permanently. This will include medical tests, procedures, surgeries, medications, chemical exposures, hormonal changes, loss, grief, and other emotional traumas. If I do have to have a medical procedure or surgery, I will not be allowed pain meds, and pain itself triggers mast cells. If I contract an infection, chances are I will not tolerate the antibiotic I need to treat it. I do not see the point of this life. There is so much suffering and so little outside of it. It is so difficult to find the will to persist and to endure. It is so difficult to find joy with these kinds of life limitations. And the future is so bleak it scares me. I literally try to imagine my dog dying every day, so that when it actually happens, it won't be such a shock to my system. I am terrified of dying when I cannot be in a hospital and I cannot receive almost any medication. As with all chronic pain, my body's capacity to feel pain keeps getting higher. I have no idea how I will ever be able to move to a new home, because I react to all residual scents and nearly all construction/renovation materials, as well as mold and other goodies found in old buildings. I feel trapped in my home and trapped in my body and trapped in this life. I hate that my illnesses make the lives of those around me miserable, especially my husband. He deserves a better life. We both do.

After all that negativity that I really needed to get out, I still need to acknowledge that it could always be worse. I could be without the people that help me through my life. The only reason I keep living this life is because I could never hurt people that have loved me through all of this. I feel so alone a lot of the time, but I know that I have people that believe in me and care. I know that I am so lucky for that.

Sorry for the rough update. I wish I had better news one of these times.

Tuesday, August 8, 2017

Another ordeal

The last few weeks, I feel like I've been through another endless ordeal, where one thing after another goes wrong without a break.

It started July 20, when I woke up with what felt like a corneal abrasion. I have experience with this, because after my 2013 surgery, I woke up with 2 corneal abrasions. They were very severe, much more pain than the surgery had caused, pain that was untouched by my post-op opiates. This was clearly not that severe, but I would consider it a moderate corneal abrasion. Pain was a level 9 initially. I had severe burning, stinging, tearing, and nasal dripping. I was unable to keep the eye open for three days. The pain and the sinus leakage triggered a mast cell reaction and a migraine. It was horrible.

On July 21, I woke up with a milder corneal abrasion in my left eye with a pain level 7. So, I had severe burning and tearing in both eyes. It hurt to open my eyes or look around. Reading was impossible. So was watching TV and playing games on my iPad. My eyelids were swollen and red. The facial pain on the right side became worse with the barometric pressure dropping and storms outside, so I had a consistent pain level 8.

On July 22, there were more storms and low pressure, so the facial pain continued at the same level. I also still had some photophobia and difficulty opening my eyes.

On July 23, the pain was lessening, although my eyes were still burning. Unfortunately, I was exposed to perfume in a restaurant (we risked going out to celebrate our wedding anniversary). I developed left facial pain that started gradually and worsened overnight.

On July 24, the left facial pain was worsening (from the perfume exposure). I then was also exposed to hospital scents for a doctor's appointment that day. The left facial pain was an 8 by the time we got home. The pain persisted and worsened to a 9 by bedtime. I also had burning in my chest and face (with a temperature of 99.0-which is elevated from my baseline by a couple of degrees).

Over the next few days, there were no new exposures, but my whole body was in pain and exhausted from all of the reactions. And the facial pain persisted at a level 6-7. The eye burning continued, as well. I now believe I have developed chronic dry eyes. I have been using gel and drops many times each day and night.

On July 28, I had widespread body pain worse than usual. I also had nausea, facial burning, and lethargy. Then, in the afternoon, I developed a spell of extreme weakness and reduced consciousness.

On July 29, I decided to try my compounded Zantac (cornstarch in a gelatin capsule) in the afternoon. It was  rough day for various reasons. I had another spell of reduced consciousness/weakness in the afternoon. Late night, I developed left facial pain and a headache. Very late at night, I was extremely emotional with hysterical sobbing until 3:00 AM (probably unrelated to the Zantac trial).

On July 30, I slept for four hours, then awoke with a pounding heart and was unable to sleep more. I had lingering facial pain.

On July 31, I slept okay, but developed a burning face and diarrhea. For some stupid reason, I decided to try another compounded Zantac, to try to confirm which symptoms were related to the Zantac.

On August 1, I only got 5 hours of sleep before waking with low blood pressure (88/55) and a pounding heart which lasted for hours, unable to sleep anymore. I then developed abdominal cramping, abdominal pain, bloating, and diarrhea. I also developed new hives on my chest and face.

On August 2, the Zantac reaction persisted. I had more abdominal cramping and diarrhea, plus burning face. I also had burning, stinging eyes that day, along with lack of balance. Then, I risked cheating on my diet and ate half a taco. It was just chicken in a tortilla, but I developed burning lips and chest, itching throat and ears. I had to take a Benadryl. The extra anti-histamine dried out my eyes too much, and I ended up with another eye injury.

On August 3, it was a stormy day, so I had head and facial pain and nausea from the storm. Unknowingly, I also started a new formulation of Omeprazole that day. (This has been a daily medication for a long time with no known side effects for me. But my pharmacy mailed a different manufacturer with a totally different list of ingredients, 15 new ingredients that were not in the previous formulation.) That day, I developed abdominal cramping and gas, and diarrhea again.  It was a severe cramping sensation in my upper middle stomach area that lasted all day and night. There were also storms that day, so I had a throbbing temple going on as well.

On August 4, I was still unaware of the change in Omeprazole, so I took it again. I had continued abdominal pain all day and night. My stomach became very tender to the touch, unable to tolerate a bra or a waistband. My diet had become mostly saltines and rice.

On August 5, I finally realized that the Omeprazole was probably the new culprit. I had continued abdominal pain all day, but no diarrhea. Without Omeprazole, I developed severe heartburn, for which I took baking soda in water many times to reduce the acid. I also experienced severe bloating.

On August 6, the abdominal pain was less, but still persistent. I went back to my normal diet and requiring Miralax. I had a lot of bloating and was still very uncomfortable. I tried OTC Prilosec for the GERD, until my pharmacy can sort out getting me a new prescription for the previous manufacturer of Omeprazole.

On August 7, the upper middle abdominal pain has still persisted. The bloating and cramping have, too. The pharmacy is arranging for the safe Omeprazole to be ready tomorrow. I really hope everything will calm down after that.

My thoughts:
Diarrhea is a really unusual symptom for me, since I have chronic constipation (since age 18) requiring daily doses of Miralax. So, when I have diarrhea without Miralax, my system is really upset and irritated. I really hope my digestion can calm down soon. I had gotten to the point where I was pretty regular and digesting my food without too much trouble. But now, I'm back to major GI symptoms throughout the day. I would love to load up on probiotics, but I don't have one I can tolerate right now (although I just ordered a new one to try, when I'm up for trying something new).

After 3 weeks of almost constant reactions and symptoms much above my baseline, I am really ready for a break. I desperately want to avoid all triggers and give my body a rest. I won't be trying anything new this week.

This means I still have a few medicine trials to get through before my next immunology appointment. I still need to try the Zantac again, as well as the Ketotifen, but without the capsule. There is a good chance I am reacting to the gelatin capsule. The difficult thing about that is that you can react to some gelatin but not others. The same is true for cellulose as an ingredient in medicine. Some is from wood and some is from cotton. It's possible to tolerate some cellulose and not others. But none of it will be labeled, so it's almost impossible to sort out.

I am still very scared to try anything new, and I desperately hope I can get back to a comfortable baseline before I try it.

I haven't been able to wear my contacts in three weeks due to burning, stinging, sometimes tearing dry eyes. Unfortunately, my glasses give me a headache, so I really hate wearing them all day every day, and I am totally blind without them. I should probably try to see an ophthalmologist, but getting to appointments is difficult, they are always scented, and who knows if I would even tolerate the treatment. I will try to do this when things calm down (I have a long list of things to get done if things ever calm down!).

I have identified a few new triggers recently.

*First, I realized I was getting burning in my chest from drinking cold water or eating hot food. Everything needs to be room/body temperature, which is a real pain and generally less enjoyable.

*Then, I realized I was reacting to blueberries. After eating about 1/3 cup of blueberries, I would develop a spell of reduced consciousness/extreme weakness for at least an hour. These have been happening for a long time, but are still very scary spells for anyone around.

*Next, I replaced my blueberries, which were my only fruit, with grapes. For a while, they seemed to be pretty safe. Maybe, I got too bold in my portion size. But I started developing the same reaction to grapes. Now that I have removed all fruit from my diet, I am not having these reactions anymore. Which is a relief, but really sad. I love fruit! I am hoping finding the right medicine for my mast cells will help broaden my diet.

*Then, I developed a contact reaction to potatoes. Wilma has potatoes as a main component of her diet. Unfortunately, the process of peeling and chopping potatoes now triggers itchy hands and face.

*I know for certain that I am reacting to one of three ingredients in my compounded Zantac (Ranitidine, cornstarch, and gelatin) with a prolonged, multi-stage reaction. Trying it twice was painful, but did make it clear which symptoms it was causing.

*I now know I cannot tolerate a specific generic Omeprazole (Kremers Pharmaceuticals). I now think of my previous brand as the only safe brand, since it's impossible to sort out which ingredient is triggering me in a pill that contains 20+ ingredients. I have to find a way to make sure that my pharmacy only ever fills this manufacturer.

It's hard to see these new reactions develop, because I have to acknowledge that my mast cell disease is continuing to progress. Hopefully, some of the new compounded medications without the capsule will end up turning things around for me. Because it feels like nothing can stop this progression.

It was also really sad to be so symptomatic during my husband's vacation week (although it was really only a few days, since he was at a conference). It was rough on us to try to find something to do for our anniversary, and have that cause me so much pain in the end, too. We did make it to a beach. It was a handicap-accessible beach, so I was able to go in my wheelchair. I even went in the water a bit, although I lost circulation to my fingers, since the water was so cold. We didn't stay long, but at least we can say we got out.

I hope everyone is doing well. I'm still here. Still plugging along. I've had some really depressed days, but otherwise I'm managing. Just exhausted from the constant fight.

Saturday, July 15, 2017

July 2017

I have a bunch of posts in mind to write, but there is enough going on that a standard update is needed first.

I had some major reactions in June.

On June 19, I got a bug bite. I didn't even notice the bite itself at first. Just my body's reaction to it. It was the day I developed a fever of 101.5, severe joint and muscle pain, head/facial pain, abdominal cramps, nausea, absent appetite, tachycardia/pounding heart, low blood pressure, reduced consciousness with intermittent loss of consciousness, and marked weakness. At the time, I thought it was a reaction to going to a doctor's office. I now believe this was mainly a reaction to a spider's venom, followed by an infection, complicated by a mast cell reaction.

When I saw a GP one week later, I still had a fever, and the bite was rather grotesque looking. For fear of triggering another reaction, I delayed taking the prescribed antibiotic for a day. Very luckily, my fever went away, and the bite started quickly fading. Since then, the fever has not returned (thank goodness). I know many people will suggest this, but I'm told this didn't really follow the pattern of a tick bite/Lyme infection. I will make sure to get re-screened for it, but I truly believe I would be feeling worse by now, when really, I'm back to my baseline.

I know. It got pretty terrible looking. It never hurt or itched too much, but it was very hot. The doctor reassured me that it sounds like a spider bite.

On the last day of fever (June 27), I had another bad reaction. I believe the triggers were multiple nights of poor sleep, as well as a formulation change for my probiotic (Culturelle has additional fillers now). There could have been other triggers, but it is sometimes really hard to sort it all out. I was struck with a sudden, intense headache, followed by a hot flash. In the following 6 hours, my vitals tanked. I spent a long time with a reduced state of consciousness (basically a stupor), with some intermittent loss of consciousness. Even after medication to raise my blood pressure and extra salt and fluid intake, my blood pressure was 80s/50s the rest of the day, along with a low heart rate around 50 (not typical of a POTS reaction). I had shortness of breath with movement and upright posture, burning chest, heart pounding, and developed a throbbing migraine at bedtime. I still don't know the true trigger, although often MCAS reactions happen when you stack triggers. Individually, they may not trigger very noticeable symptoms. But when stacked together, they can trigger a major reaction. There is also a bucket analogy to explain this. Each trigger adds to the bucket, and you don't get symptoms until the bucket overflows. (I still love this article to explain the phenomenon of cumulative triggers and why you can tolerate something one day but not another day:

Anyway, I had a follow-up with my allergist on July 7. The doctor wasn't as proactive as I'd hoped regarding treatment. She only wanted me to take more of my current antihistamines. Luckily, I got up the nerve to ask about a few other treatments, and she was amenable to trying them both, although she was not optimistic. She told me she only has three other Mast Cell patients, so she isn't sure what else to try. But, she agreed to prescribe two medicines to be compounded. One is Ranitidine, which an OTC H2 blocker, used to stabilize mast cells. I have to discuss with a pharmacist the need to use a minimal number of fillers. (This was not included on the prescription.) The other one is Ketotifen, which is commonly used in other countries, but not FDA approved in oral form. It is supposed to be an H1 blocker as well as a mast cell stabilizer. Again, I need to find a compounding pharmacist to help me figure out the least and safest fillers we can use to compound it. Different compounders have access to different medications, and different willingness to compound in new ways. Also, prices can vary wildly, because the pharmacy sets the cost and doesn't take insurance. So, I haven't started the process yet. Once I do, I'll have to trial one medication at a time, and desperately hope that I can tolerate them, and that they have some kind of positive effect.

I've been dealing with a few other triggers this summer. One is that I can no longer tolerate iced or cold water. It adds to the burning sensation in my chest. I'm getting used to drinking room temperature water (about a gallon a day is needed).

A huge problem in summer is outdoor smoke. Grilling, bonfires, and meat smokers. All of it kills me, and makes me glad I now have an EpiPen. It's hard, because I can't take Wilma outside if it's in the air. And we have to avoid even opening doors to outside. I get immediate pain in my head and coughing/wheezing from even a single breath of smoke.

Also in the summer, I have to run the A/C a lot of the time. We have a wall unit. Unfortunately, it doesn't filter out all smoke. That puts me in a really scary situation, because there is nowhere to escape. So, I feel on edge whenever the A/C is running, because I don't want to let anything dangerous into my home. Even a person walking past with a cigarette while the A/C is running can ruin my entire day. But, I have to run the A/C. You don't want to see me when the indoor temperature is higher than 76 degrees (I develop presyncope with reduced consciousness.) So, I have to risk it a lot of the time.

Finally, I've started having trouble just sitting in the family room at mom's house. The room is connected to the attached garage. I will randomly start smelling faint gas fumes, and a reaction slowly develops, getting very severe some days. Having to avoid the family room just keeps me even more isolated. We even stopped using the door to the garage, but I can still smell the fumes.

I'm also reacting to fragrance free sunscreen now. I wish I could find a sunscreen with truly no scent, but then it probably wouldn't actually work. I don't personally wear any. I just cover up with clothes (which does not help my heat tolerance). But people around me who spend a longer time outside obviously need to use it.

It drives me crazy to constantly have the world attacking me, and to see my sensitivities continue to progress.

Anyway, that's what's new. I am still so grateful for my safe havens. Luckily, my bedrooms in each home are both still safe spaces, which I have to protect carefully. I am so lucky that the people I live with help me to keep it that way.

I'm also so lucky to have my little companion, Wilma. She is the most low-maintenance dog I've ever known, and we are very attached, spending nearly 24/7 together. I am allergic to most dogs, but I don't believe I react to her.

I'll post again soon, hopefully. Thank you for still reading and still caring about my lonely saga.

Tuesday, June 20, 2017

Another diagnosis...finally.

Well, I have some news. I got in with the new allergist 2 weeks ago. She completely believed me about all of my symptoms, not blaming any of them on anxiety. She didn't waste time and immediately ordered comprehensive testing for MCAS (Mast Cell Activation Syndrome). She ordered several blood tests and a 24-hour urine collection. I don't have all of the results yet. But, the doctor called me herself on Friday afternoon when the blood work came in. She found multiple elevated levels of mast cell mediators in my blood. Clearcut evidence that I actually have this disease that I have suspected for four years. She said it was so conclusive that I don't even need to bother with the urine collection.

The best thing about this diagnosis is the validation that I am not imagining my symptoms or my progression, and that someone who knows what they're talking about has confirmed this. It is still a new diagnosis, so plenty of doctors are not yet even aware of it, much less able to recognize, test for, diagnose, or treat it. But it is such a relief after so many doctors have told me that my symptoms must be anxiety, or some sort of conditioned response (Thanks to my condescending allergist for that one). It's hard not to believe they're right after you've heard it multiple times. But I finally know that I am not imagining or catastrophizing any of my symptoms. When I am exposed to any type of trigger (environmental, medication, food, temperature, weather changes, vibration...anything my body decides is a trigger), my body goes through a cascade of symptoms due to the release of specific chemicals from my mast cells. My body believes it is being attacked, and responds as such. This condition is often progressive, as in my case. It is also notoriously difficult to treat, because so many potential treatments end up becoming triggers themselves.

So, that is the hard thing about the diagnosis. Everything that I have suspected is happening in my body is really happening. I knew I was suffering severely, and I have been mostly housebound for 6 months, and have had to avoid interactions with most people for quite a bit longer. This certainly explains why it is happening to me. The hard thing is figuring out how to stop the progression. I am lucky, because I do not experience anaphylaxis. It is now pretty confirmed that my reactions to cigarette smoke and running in high school and college were in fact anaphylactic reactions. Never asthma. Not "Vocal Cord Dysfunction." Which explains why the treatments never helped. But the EMTs giving me a shot of Epi always resolved the issue. I now have a prescription for an Epipen, because in my state, I could escalate to anaphylaxis at any time.

But let me tell you, even without throat closing anaphylaxis, my symptoms are becoming insane. Each reaction seems more severe than the last. I have a couple of recent examples of reactions that really demonstrate this:

About a month ago, I decided to try taking Pepcid. It is an H2 blocker, so it is helpful in treating MCAS. I suspected that I wasn't tolerating Zantac, so I discontinued that and tried the Pepcid. One 12-hour pill. My reaction included:
-Insomnia for 3 days
-Sensation of a fever, alternating between hot and cold, with no measurable fever
-Pounding heart for 3 days
-Full-body itching (pruritus)
-Diarrhea for 2 days (only able to eat white rice)
-Swollen face (edema)
-Burning face
-Burning throughout my torso
-Headache/facial pain

A week and a half ago, I tried a new H1 antihistamine my new allergist prescribed. It is a prescription called Cyproheptadine, and generally very well tolerated. I was still cautious, so I tried only 1/4 of the lowest dose. My reaction was almost identical to the Pepcid reaction, although the diarrhea and insomnia were more severe. I slept less than 30 minutes, despite heavy sedatives.

Then came yesterday. A hellish day I won't soon forget. I had to leave the house. I was overdue for a psychiatrist appointment. It was this office that made me miss the holidays last winter. But I had to go, because he prescribes my sleep medications. They are controlled, so no one can prescribe them without regular appointments. So, we had to leave for the office at 12:45, which is waaaaay too early for me to be leaving the house (sounds ridiculous, but true). There were also storms around, which really agitates my mast cells. I wore my respirator the entire time. Yes, a full respirator. Not just a mask. A ridiculous respirator. I did not smell anything through the respirator. Unfortunately, the reaction was insane. On the way home, my pain levels became very high, especially in my head and my sacrum. We got home, and all I could do was curl up in fetal position and moan. I crawled into bed and kept moaning. My mom came to check on me and noticed that I was hot. Really hot. I developed a fever that reached 101.5 by evening. (I have normally low body temperature, and normally do not get a fever with infection, so this was very notable for me.) So besides the fever, I experienced:
-Severe, widespread muscle and joint pain (especially sacrum) - Pain level 9
-Skin sensitivity
-Headache/Facial pain - Pain level 8
-Abdominal cramping
-Complete lack of appetite
-Tachycardia/Pounding heart (heart rate 100-120 for over 12 hours)
-Low blood pressure (90/60)
-Intermittent loss of consciousness
-Bladder pain
-Marked weakness (unable to lift my purse or my 7 lb. dog)
-Insomnia, because who could sleep through all of that?
Today, I woke up and still had a bit of fever, but it eased off as the day went on. We were pretty sure I was getting really sick, having contracted a flu or virus or maybe a urinary/kidney infection. But, if it were any of those things, I would still be sick tonight. And I'm mostly just back to my usual, crappy state. So, it was obviously a major mast cell reaction.

I feel completely traumatized by these reactions. I honestly don't know how I will make myself try another medicine or enter another building ever again. I am terrified at the amount of suffering I go through from such small things, and at the progression of my illness. The pain and fever are so difficult, because I cannot tolerate anything that might ease them. Anything!

A brief list of my medication intolerances:
Sulfa antibiotics
Wellbutrin/Cymbalta--seemingly all SSRIs and SNRIs are out
Nsaids--everything from Advil to Aleve to Toradol to Indomethacin
Triptans--every migraine medicine
Vitamin B2
Most probiotics
Cromolyn Sodium--at least the generic

So, in general, with MCAS, it is thought that when someone is reacting to most medications, they are not reacting to the medicine itself, but to one or more of the fillers/excipients/inactive ingredients. Most likely it is a commonly used ingredient. (Most medications contain between 10 and 20 of these extra ingredients...some even more.) Most doctors don't believe it is possible to react to such tiny traces of ingredients. But MCAS specialists see it all the time. And it certainly seems to be the case for me, since I can have the same exact set of symptoms from so many different medications. So, the next logical step seems to be to try to order compounded medication. It is special ordered through a pharmacy to contain no fillers, or only 1 safe filler when necessary. There are a few problems. One is that insurance companies don't cover compounded medication, even when medically necessary. The other is that most doctors won't even consider prescribing these medications. My new MCAS-savvy allergist doesn't seem to prescribe them. But I may have to convince her to try for me.

The other problem is that I could be reacting to one or more of my current medications, and that could be keeping me in a reactive state. It feels almost impossible to sort out which one is problematic though.

Another issue is that the only mast cell stabilizing medication approved by the FDA is Cromolyn Sodium. I have tried the generic. I did not benefit from it, and once I reached therapeutic doses, I seemed to be doing worse. (Although it's hard to say, because my condition has been progressing all this time.) I have heard of people that do poorly on the generic version, but the brand name version is very helpful. So that still may be worth a try. Again, my doctor would have to agree it's worth a try.

So far, I know that my blood contained elevated levels of Prostaglandins and Chromogranin A. Just these two chemicals explain so many of my symptoms: burning, increased pain perception, sleep dysfunction, joint and muscle pain, nerve pain, changes in heart rate and blood pressure, bronchoconstriction, etc. And mast cells release any combination of over 200 chemicals in any given reaction. Most of them cannot be tested for in a commercial lab yet. So, the array of symptoms this can cause is staggering. I will explain much more about this in my next blog post. (Hopefully, I'll get to it soon!) I plan on the next post being explanatory about MCAS, especially information I've learned in Dr. Afrin's book Never Bet Against Occam. I am still on a 2+ year wait list to see Dr. Afrin. He is leaving the University of Minnesota to start a mast cell clinic, so there will be a bit more of a delay than expected. But I am so relieved I have a local doctor to help me in the meantime. I am so lucky to belong to so many different FB support and awareness groups that have helped me to locate this doctor and learn that I am not a freak. I am one of them. I am extremely isolated, but I am not the only one going through this insanity. In fact, Dr. Afrin believes it is an epidemic. I learned that with EDS and POTS, along with my progressing chemical reactivity, MCAS was the natural explanation. They are genetically linked. I hope to get the explanatory post up soon. In the mean time, for anyone curious, the blog is an excellent resource written by a medical researcher.

In particular, this post explains the connection between EDS, POTS, and MCAS really well:

Also, this post is amazing:

For a simplified version, I really like this blog:

Especially this post:

I am incredibly lucky to have a core support group that are helping me to maintain my bubble-like existence, protecting me from triggers whenever possible. These are the people that are forced to live with me: my husband some of the time, and my mom and stepdad the rest of the time. I would absolutely not be here without them and their support. They have believed in me long before this diagnosis. And I can never thank them enough for it, because I know it sounds crazy that I have another rarely heard of diagnosis. It is crazy. But it's probably not that crazy, because it's possible that the mast cell activation has been responsible for every symptom and diagnosis in my lifetime. Nonetheless, I could not survive this without their help and endless accommodations. And....I'm crying now, out of gratitude with a hint of despair.

Thanks for reading. I'm hopefully going to go sleep now, since I barely slept through my fever last night.

Wednesday, April 26, 2017

Spring 2017

Well, I fired the last doctor. After our last appointment, it became clear that she would not be able to help me. I don't think I have the emotional energy to go through all of the reasons why. But mostly, I wasn't being heard. She planned to put me through her usual "immune dysfunction" treatment protocol, despite my intolerance of every treatment she tried. She wanted the key components of my treatment to be Vitamin B12 and D supplementation, despite the fact that my levels were what she admitted were optimal, and my severe reaction to various supplements (which she totally ignored). We were definitely not seeing eye to eye on anything. Especially the potential diagnosis of MCAS, and the fact that mast cell issues are definitely possible with normal tryptase levels. In fact, Dr. Afrin (the international specialist in MCAS) states that most MCAS patients have normal tryptase levels. This is new information for most doctors, and not taught in medical school yet.

I honestly got so despondent, that I started to question the utility of even pursuing a diagnosis. But, then I started reading Dr. Afrin's book (Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity). As I read through his extensive case histories and thorough explanations of mast cell symptomatology and heterogeneity, I have become more certain that this is a route I need to pursue for myself (rather than just give up all hope on ever feeling better or stopping the progression). So, I am on Dr. Afrin's wait list, and will have an appointment in approximately 2 years.

In the meantime, I have a list of things I can try, but I will need a local doctor to help me with some of them. So, after more searching, I got a recommendation for an immunologist in Evanston that apparently works with several of Dr. Afrin's local patients. (Dr. Vivian Chou) She reportedly accepts MCAS as a diagnosis and will work with Dr. Afrin on treatment plans. My appointment will be May 17. I know better than to get too hopeful, but as I've said before, I have just enough hope to try, which is really all you need. You don't have to have any level of certainty or confidence. You have to have just enough to be willing to try the next thing. (I don't buy into the whole power of positive thinking thing. It only causes me heartache from disappointment. I like to proceed with caution, realism, and my eyes wide open to possible outcomes. So, I am aware this appointment may be another bust. But it may get me headed in the right direction, so I'm willing to put myself through it. What more can you really ask of me?)

Anyway, the various things I haven't tried yet to try to calm my mast cells include:

  • Continued trials of Cromolyn Sodium
  • Switch to brand name Cromolyn Sodium (Gastrocrom), as it may be better tolerated (but more expensive)
  • Try the compounded or imported medication Ketotifen, which is a mast cell stabilizer in addition to an antihistamine
  • Try switching all of my medications to compounded forms without fillers (another expensive option...and a huge hassle)
  • Try adding an H2 blocker back into my regimen to see if I can tolerate it (may also need to be compounded, as medication fillers can be huge mast cell triggers)
  • Try the OTC supplement called Quercetin, which has been studied and shown to stabilize mast cells--I would need to try the purest form possible.
  • Try a pure non-citrus, non-acidic supplemental vitamin C, which in higher doses, can stabilize mast cells
  • Try filtering all my water (drinking and bath water)
  • Low dose Doxepin is sometimes helpful (but I have a history of not tolerating serotonergic medications or tricyclics, so I would dread trying it.)
  • Low dose Aspirin therapy helps some people, but I currently don't tolerate any NSAIDs, so I would be hesitant to try this, too.
Those are about all of the things I expect to be able to try before seeing Dr. Afrin. Medication trials take a long time in mast cell disease, because you can only try to change one thing at a time, various forms have to be tried, and doses have to be titrated up very gradually. Also, if you are having a major reaction, you can't try anything new until you get back to baseline. So each of these is a long, drawn-out process. With frequent reactions, it can take a long time to figure out what you are reacting to. Is it one of your current medications or foods that you no longer tolerate? Is it something environmental? Is it a change of season or weather causing a flare? Or is it actually the new change you are testing? And treatment outcomes are so variable and individual, so finding the right regimen for an individual with noticeable improvement often takes 2+ years of constant experimentation. Dr. Afrin says that about 80% of his patients have significant improvement after 2 years of treatment.

Once I get to Dr. Afrin, if these treatments do not get me to a tolerable place, there are more intense treatments that are often tried. These are mostly milder chemotherapy agents, especially Gleevec or Hydroxyurea. I don't know a lot about them, except that they have a higher risk profile than other medications, and many MCAS patients get significant improvement in their quality of life on them. Tolerances can be drastically improved. And symptoms you have accepted as part of your normal can just disappear.


That's the mast cell update.

My EDS body has also been failing me. I've been trying a PT protocol for EDS for 4 months now, and I've pretty much had to give up on it. Trying to stabilize my sacrum and pelvis with gentle exercises has caused massive, disabling pain in the area. I've had to use my cane to get around at times. I can't seem to even handle simple bridges without a massive pain flare up.

This has happened with so many exercise routines over the years. I was once in quite good shape, working out with a trainer that took a special interest in me and gave me free sessions. I was the strongest I've ever been. Then, I had my lumbar surgery, and I couldn't return to that type of exercise. I switched to a routine with a PT in Milwaukee who had dealt with hypermobility a lot, and she helped me with small exercises to stabilize my troublesome joints and my whole core. She helped me come up with alternate exercises when things got too painful. Then, I had CCF surgery, and moved to Madison, so I lost all progress again.

At some point, I was using walking as my main form of exercise, but my feet became so painful that I could barely stand any weight on them. My custom orthotics got me able to walk again, but only for as few steps as possible a day. Any extra walking, and the foot pain becomes unbearable. So I have to limit my time on my feet to the bare minimum.

After my last surgery, my POTS got really bad, so I started recumbent biking as my main exercise. This was so awesome for me. I started really gradually and got to the point of decent cardio workouts while also building strength in my legs. This worked so well for a few years. Until it didn't anymore. I developed severe, disabling pain in my hips. I tried a new recumbent bike with slightly different positioning, and that worked for another 6 months. But the disabling hip pain came back. That was last fall, and I haven't been able to work up a sweat since then. The timing certainly did correlate with my most recent deterioration, but causation is questionable. It could certainly be that the worsening mast cell activation increased the joint pain and weakened my connective tissue. Or it could be that the lack of exercise caused the mast cell activation to worsen. (Dr. Afrin suspects that the connective tissue weakness in my form of EDS may be caused by mast cell activation itself.)

Either way, I started this new PT protocol in January, working on my own, since I can't actually go to a PT office. I've been really dedicated to it. The exercises are all pretty familiar to me, since I've had literally years of physical therapy. But for whatever reason, it just doesn't seem to be working out. For now, the less I use my body, the less pain I am in, making it easier to get through my activities of daily living. And I need to be able to keep caring for myself. No one can help me get all of my meals and bring me everything I need to get through the day, much less feed Wilma and take her outside for me. Those are the few things I'm responsible for in life, so I have to continuing managing them myself. Also, losing my mobility would really make my POTS go crazy. It's bad enough that I can't do cardio. But being bedbound brings the POTS to a whole new level.

So, for now, I've given up on any specific exercise and just try not to stay idle for too long at a time. My eating schedule and Wilma's eating and outside schedule help with this. The only thing I can think of trying sometime is an exercise machine called a NuStep. It's used in PT gyms, especially for people with severe arthritis and multiple joint replacements. It is a seated stepper with minimal range of motion. But, even used, it costs about $5000. So, it probably isn't in my future. There's no way to know how long my body would tolerate it anyway. I would love to go back to PT, especially aquatic PT, but I'm pretty sure I wouldn't tolerate the chlorine anymore.

My diet has been pretty much the same. I can't be around the smell of cooking or plenty of foods anymore (especially coffee and hot sauce--which may be my husband's favorite things). We figured out that the smell of coffee is what was triggering me in our apartment. So, my husband has sacrificed his favorite fresh-brewed coffee and switched to the much less enjoyable cold brew. And I can live at home again (at least, until the weather gets too hot. We don't have central A/C, so I can't tolerate the hot months here). Anyway, my diet is much the same. I'm eating blueberries now (frozen so they are fresh). They make my nose run and sometimes my face a little itchy, but since they are my only fruit, I'm sticking with them for now. I still splurge and try something outside my diet about once a month (usually some form of chicken and broccoli...I don't eat meat on a daily basis. I'm actually eating mostly vegan at this point, out of necessity.)

April has been a bad month for headaches. The weather changes always torture my head. I've had migraines with visual aura, plus the usual pressure/tension headaches and facial pain more days than not this month. The pressure is dropping really low tonight, and I sure feel it.

Sleep is inconsistent. But if I haven't had any recent triggers, and the weather is okay, and the stars align just right, I can sleep adequately multiple nights in a row. (For me, that usually means two bouts of sleep, about 3 1/2 hours each.) Other nights, I only get 4 hours of broken up sleep. Environmental and food triggers, as well as weather all contribute to this. But I am so grateful that I am not as sleep deprived as I once was.

Unfortunately, fatigue, malaise, and brain fog are still severe daily symptoms for me. I spend most of my time between meals staring at a wall or staring at a screen. In a daze. Not capable of much conversation or clear thinking. I'm still not tolerating any stimulants or exercise, so there's nothing to do for it.

I still have daily pain averaging a 6, usually worse in the evenings, and some days much worse than that. Pain includes headaches and body pain. The body pain is pretty widespread. My hips, knees, and feet hurt every day. My knees, especially on the outside of the knee by my unstable fibula, require constant bracing, and have chronic pain that definitely limits my mobility. My feet are also major hurdles of my mobility. My spine hurts often, My neck and shoulders hurt, too. My shoulders are easily pulled out of place just by leaning wrong or laying on my side. My SI joint comes out of place just by sitting wrong for a minute, causing widespread pain. I have muscle aches, especially in my legs, every day. This can often be micro-tears, as well as overuse injury from trying to compensate for my unstable joints. I also have bone pain, presumably from the mast cells, in my leg bones, every day. And currently, I cannot tolerate a single pain or migraine medication or supplement. Just nothing for pain. It is an often excruciating life.

Depression has been a persistent issue, given the limitations of my lifestyle. I have risked several social gatherings this spring, but I have suffered a flare after each one, with at least several days of worsened symptoms.  Usually head/facial pain and burning in my chest, as well as insomnia and sometimes agitation. So, the isolation still largely persists, and so does the depression.

My anxiety is dependent on triggers. If I get exposed to anything (most recently the smell of hot sauce 4 days ago), I will feel immediate anxiety, a direct effect of mast cell activation on the brain. But, I can go many days with absolutely no anxiety, which is such a relief. We identified my Xyzal antihistamine as a major trigger of chest burning and anxiety. It just took 3 months to sort it out. Now, I'm back to only having these symptoms from a trigger, although they last for days at a time.

Okay...I've used up enough of your time, and gotten everything major out of my head. Hope you all are doing well! Thanks for reading. I'll write again after my next appointment.

Saturday, March 11, 2017

Autoimmune Disease?

After being rejected by the MCAS specialist at Rush, I decided to ask my support groups again for recommendations of doctors that might be able to help with diagnosis and treatment. I made an appointment (with a strong push from my brother) with a local allergy/immunology doctor that apparently does not necessarily diagnose MCAS, but does treat a few patients for it.
She was very local, and I had no problem getting an appointment with her. So, I saw her Thursday this week.

In order to make sure I presented my case well, my brother and my husband helped me put together a medical and allergy history for the appointment. This is something I probably wouldn't have had trouble doing in the past, but thinking clearly is not my strong suit anymore.

So, this is the history I put together. I keep thinking of things I missed, so it's not totally comprehensive, but I can keep adding to it, as needed.

Medical and Sensitivity Chronology

Summary and Current State

Significant and progressively worsening symptoms throughout my life
  • Diet is restricted to about 15 foods.
  • Unable to tolerate any scented products, cooking smells, and most medications.
  • Frequent symptoms of a reaction include: burning sensation throughout my torso, sudden and intense migraine, sinus pressure, excessive mucous, trigeminal pain, pounding heart, agitation and restlessness, insomnia, increased heart rate and/or blood pressure, sometimes hypotension/bradycardia, vertigo, increased GI motility, bladder pain, facial burning. Most reactions last 3-5 days.
  • In between reactive episodes, I have low blood pressure, low heart rate, low energy, almost non-existent anxiety, constipation, and 10 hours of deep sleep a night. During episodes, I have either low or high BP and HR, excess energy, sometimes seeming manic, increased motility, and 5 hours of restless sleep.
  • Nearly every week I develop a new sensitivity. I'm running out of foods and medicines that I can tolerate. I currently can't tolerate my own apartment, due to old carpeting, brewing coffee, and cooking smells. I stay at my mom's house, and often have to retreat to the bedroom to avoid a trigger. We are unable to cook in the house. I am very isolated, and haven't seen my friends or much of my family in almost a year.
  • Progression has been accelerating recently, and symptoms are often constant at this point, making it hard to identify new triggers.
  • My overall condition has deteriorated, including hair loss and weight loss (BMI 17.8)


Allergy to breast milk and dairy formula—projectile vomiting, bright red face, excessive mucous


Allergies (all skin test positive) to cats, dogs, grass, trees, dust, mold, mildew—hayfever, runny/stuffy nose, itchy eyes/nose/ears/throat


Severe allergy to cigarette smoke and other smoke—deep cough, difficult breathing, tight throat, sometimes passing out from lack of air (inhalers didn't help, epi shot did). This was never officially diagnosed as anaphylaxis.

Excessive fatigue, nausea, headaches, narcolepsy, body aches, GERD, IBS


Age 18
Tonsillectomy—reaction to Compazine—dystonic reaction: dislocated jaw, stroke-like symptoms; resolved with Benadryl

Chiari surgery—temporary improvement, but then developed POTS—hypotension, tachycardia, passing out, “reduced consciousness spells”

Age 20: Cranio-Cervical Fusion surgery—Condition worsened after, developed symptoms of EDS

Early 20s
Allergic symptoms became more bothersome, repeat allergy skin testing, but came up negative to everything.

Age 24: Spinal cord detethering surgery and cholecystectomy

Age 26: Fusion Reconstruction; Official diagnosis of hypermobile EDS

Age 29 (2013): Repeat Fusion Reconstruction (2013)
This surgery had multiple immediate complications: bilateral corneal abrasions, difficult intubation with significant inflammation and prolonged sedation, extended periods of unconsciousness, intolerance to most post-op medications.
  • Developed severe insomnia, after years of hypersomnia
  • Developed Inappropriate Sinus Tachycardia, POTS worsened- which was later switched to a diagnosis of Hyperadrenergic POTS
  • Lifelong IBS worsened: constipation, severe bloating, abdominal pain, occasional episodes of diarrhea
  • Developed chronic migraines—failed many treatments over the next 3 years.

Allergy symptoms got progressively worse
  • Started noticing worsened chemical sensitivities
  • Developed a reaction to Dawn dish detergents and spray air fresheners: causing widespread itching, runny nose, itchy skin.
  • Allergic response to dogs became more severe, although allergy testing was negative.

Allergy testing results
  • Rast blood testing showed no allergies.

Age 30 (2014)
Allergy symptoms
  • Major reaction to hardwood floor varnish and excessive heat in new apartment that led to eventually having to move. Symptoms included: full body itching and flushing, tachycardia, palpitations, wheezing, repeated syncopal episodes, intense facial pain, deep cough and feeling of throat closing, blue lips, feeling of doom, and urgent diarrhea. I was eventually carried out of the building, unconscious.
  • Developed severe, intractable facial pain after the varnish episode—triggered by fragrances, smoke, weather
  • Full body pruritus with significant agitation and insomnia became severe.
  • H1 and H2 Blockers plus Singulair helped with the severe itching and hayfever symptoms.

Allergy tests
  • Late 2014, saw Dr. Kentor (allergist) for Mcas testing: Mcas was suggested by my geneticist and my POTS specialist. Tests that were run at the time: Serum tryptase (3.1 ng/mL) and urine 5-HIAA (3.6 mg/24h)

Age 31 (2015):
Allergy symptoms
  • After developing severe itching, bladder pain, runny nose, and agitation after certain meals, a low histamine diet also became essential to control these symptoms.
  • All other sensitivities progressed.

Age 32-33 (2016-Present):

  • In June 2016, I was hospitalized for status migrainosus. Treatments (steroids, Toradol, Zofran, DHE) triggered a major reaction: hypertension, tachycardia, severe internal burning, twitching, agitation, panic. Severe headache/facial pain persisted for 6 weeks, and has returned often since then, almost always triggered by a chemical exposure or a weather change.

  • Started Nasalcrom and Gastrocrom in early 2016, but chemical sensitivities continued to progress.
  • Currently taking: Zantac 2-3x/day, Zyrtec, Xyzal, Hydroxyzine, and Gastrocrom for mast cells. Midodrine/Clonidine as needed for dysautonomia. Klonopin and Ambien for insomnia.

Symptoms - Current State
  • Ever since the 2016 hospital stay, I've developed the internal and/or facial burning, agitation, pounding heart reaction to more and more medications: Cymbalta, Nsaids, Prevacid, Nexium, triptans, Tylenol, Sudafed, Vitamin B2, probiotics, and magnesium. I have had to discontinue all of them. I suspect that I am reacting to some of my current medications, as well.
  • After certain foods or smells, I get the reaction of hypotension, bradycardia, white lips, reduced consciousness.
  • A sudden fragrance can cause me to pass out.
  • A carbon filter mask used to reduce reactions to scents, but doesn't help anymore.
  • December 2016, after cold turkey Cymbalta withdrawal, I became so sensitive to everything that I had to remain housebound. I also had to quit teaching piano lessons.
  • Reactions have been increasing in frequency and severity to a larger number of triggers and smaller exposures.
  • In February, 2017, I started developing severe reactions to cooking smells, coffee brewing, and any scent. Even reheating many dishes in the microwave causes: sudden, intense migraine, sinus pressure, and trigeminal pain, pounding heart, agitation, insomnia, increased heart rate and blood pressure, vertigo, increased GI motility, facial burning, internal burning sensation (mostly in my torso- but not related to acid). This reaction lasts 3-5 days.
  • A single mosquito bite leads to hives, widespread itching, and restlessness/insomnia for a week.
  • Exposure to bleach leads to itchy nose, chin, throat, excessive phlegm, wheezing cough, facial pain, hives.
  • Any type of tea causes a hive outbreak.
  • My current medication regimen reduces itching and hayfever reactions, prevents hives, reduces swelling of eyes and lips.
  • My head, body and especially facial pain reaches a 6 most days, and some days reaches an 8 or 9, but I am unable to tolerate a single medication to relieve pain or migraine anymore.

  • Chiari Malformation--Repaired surgically
  • Cranio-Cervical Instability/Cranial Settling/Retroflexed odontoid/Basilar Invagination--Repaired surgically
  • Occult Tethered Spinal Cord--Repaired surgically
  • Gallbladder disease--Repaired surgically
  • Ehlers Danlos Syndrome - Hypermobility type
  • Dysautonomia
  • POTS with Hyperadrenergic episodes
  • Osteopenia
  • History of serotonin toxicity
  • Irritable Bowel Syndrome
  • Gastroesophageal Reflux Disease
  • Raynaud’s Phenomenon
  • Chronic Migraines
  • Chemical Sensitivities
  • Chronic Dehydration
  • Chronic trigeminal pain/atypical facial pain


So, armed with this 3 page document, summarizing my miseries, I went to meet Dr. Sullivan. (I was also armed with my respirator. Even though I was reassured that this was a fragrance-free office, and that the staff would be unscented, I correctly assumed that would not be true.)

We were in the office for 4 hours. I was in immense pain from fragrances. I collapsed and nearly passed out after a standing pulmonary function test. I did not agree to have skin testing done for allergies, because I have already had negative skin testing done in the past, and I don't believe IgE allergies are my problem.

This led to a lot of waiting time. But, we explained much of my story to a nurse, and gave her my medical history document. She passed it along to the PA, who came in and went through more details of my history. The PA discussed my case with the doctor. The doctor read over the document. Then finally, the doctor came in.

She didn't have a lot of questions left for me. She mostly had a prepared speech to give me. But the first thing she said was, "You've come to the right place."

That was obviously very reassuring to hear. But having been through my fair share of overly-confident doctors, I made sure to keep my guard up. (I have to protect myself from getting crushed!)

Next, she basically went through a presentation for me on autoimmune diseases. She didn't actually use the phrase "autoimmune disease," but described a state of immune dysfunction. She certainly believes this is responsible for most of my problems.

She does not like my long list of syndromes. She'd rather I say that I have headaches than migraines (although I certainly believe that I have both!) She'd rather say I have joint problems than EDS (which seems to be a major lack of understanding of connective tissue disorders). She doesn't love POTS as a diagnosis either.

The reason for her distaste for all of these separate labels seems to be her belief that an immune dysfunction is underlying the vast majority of these syndromes.

She also really doesn't want me to get hung up on the "mast cell activation syndrome" label. Although, she does agree that mast cell degranulation may be responsible for many of my symptoms. She thinks the degranulation is a result of the immune dysfunction.

I believe she is trying a more holistic approach, rather than just focusing on mast cells.

So, she first went through this pamphlet with me, listing all of the triggers and irritants that could be upsetting my immune system. This list included:
  • Allergens--She doesn't think this is a major component for me.
  • Chemical irritants--I am already avoiding everything on this list, out of necessity.
  • Changing weather conditions--Unavoidable, but she suggests that I move south and to the coast.
  • Infections--Not a frequent issue for me, although there could be some chronic, low-grade infection
  • Strenuous exercise--I am already avoiding this.
  • Reflux disease--I am already treating this, as well as following diet/lifestyle recommendations.
  • Medications--She would like me to avoid NSAIDs and beta blockers (already doing).
  • Food--Mainly, she recommends avoiding MSG, sulfites, and preservatives. With my diet though, she hopes we'll be able to expand rather than restrict.
  • Emotional anxiety--I have no work or social life to worry about, so all I can do is manage my anxiety about my health.
  • Hormones--She doesn't believe this is a factor for me anymore, since I have been on continuous birth control to keep my levels steady for 5+ years.
So, for the most part, I'm already following the lifestyle recommendations. Unless I feel like moving to the beach in southern Florida, Arizona, or California, I can't change much. (I told her I can't tolerate the heat, but she reassured me that I will be able to in the future.)

But she does seem to have a plan of action. I will be seeing her every two weeks, and making small changes at each appointment. She has very high hopes for me, and believes that I will be feeling significantly better in just a few months. I am, as always, hesitant to get too hopeful about any treatment, but I'm willing to follow the plan, as long as it doesn't make my life significantly more miserable.

She did a ton of bloodwork, but didn't tell me specifically what was being tested, so I'll have to report back on this one.

She wants me to get back on Vitamin D, which I discontinued along with all of my other supplements after things flared up. She wants 4000 IU daily, in tablet form (not gelcaps)

She wants me to continue Singulair, and says that we may double the dose at the next appointment. This is a Leukotriene blocker, and she says it can reduce inflammation throughout the body, although it is marketed as an asthma medicine. I've been on it for 2 years already.

She wants me to drastically reduce my anti-histamine usage. She believes some of my daily symptoms, including random bouts of anxiety, are side effects of too much anti-histamines. This one is difficult, because I am soooo itchy without them, but I'm making my best effort.

Next, she wanted me to add Culturelle Health & Wellness. She was very impressed that I was aware that this one is a better choice, because it doesn't contain inulin, which is a prebiotic. I have been on probiotics for several years, and I have tried this one before. But I had actually been planning on trying it again. I even bought a box of it just a week ago, so I was glad to see we agreed on this one.

Next, she would like me to decrease my dosage of Prilosec. This is unfortunate, because after my body could no longer tolerate Prevacid or Nexium, I finally found that I could tolerate the prescription strength Prilosec. I also went 3 months (November-February) without any drug in this class. The heartburn was absolutely miserable. And I didn't get to tell her this, but my grandma died of esophageal cancer, so heartburn is not something to take lightly in my family! Also, both of my parents and one of my brothers need a PPI to control the GERD. I've tried going without before, but it seems to always come back. I understand that it is not good to use long-term. But, it feels unavoidable. I am glad that she is trying to ween me down, and I will try my best to cut my dose in half, and see if it is tolerable. I just know that lifestyle measures may not be enough with such weak connective tissue in my gut. Maybe if I switched to an all liquid diet? But if I'm eating solids, I'm not sure it will be possible, since her plan is to get me off of them completely again.

Finally, she recommended Vanicream products for skin care. I already use their shampoo, but I will try switching for my face to see if it can clear up the rash I always have on my cheeks.

She was running short on time, and talking very quickly with few pauses. So, I couldn't add much or ask many questions. I hope this will be better next time I see her.

I don't know if she really understands that my EDS makes me a medical zebra. That I may not react as expected to changes. And that simply putting me on the autoimmune protocol she uses with her patients may not be practical. But I really appreciate that she wants to change things gradually, since my body can't handle big changes.

It sounds like she has a lot more in mind to change at upcoming appointments. And of course, we'll have to see if anything shows up on the blood work. I'm so used to blood tests coming up perfectly normal that I never expect much from them. But who knows what she tested for? Maybe something that hasn't been checked before. Maybe, this whole time, I've had some autoimmune disease driving my symptoms. I'm certain I've been tested before for most things, but not everything.

Believe it or not, I actually liked her. I really did. I am very careful to not get my hopes up when someone says they can change my life. Because even as things have evolved over the years, this has always been my life. Sickness and downward progression. I don't love the over-confidence. But it is actually reassuring to hear a little bit of it. And it's really nice that someone wants to manage things, when most doctors seem to just shrug and turn me away at this point.

But, I am absolutely dreading going back into the office. My facial pain is so severe since the appointment. How can you make yourself walk into an office with a level 3 pain, knowing you'll come out with a level 8? I did it once, but every two weeks? I don't know how to force myself to do it. It is just so much suffering. I assume my next appointments will be shorter, but I don't know what can be done to expose me to less fragrance. I guess I wear the respirator the entire time, even when I don't smell a strong scent. But the respirator itself irritates my facial pain. I can call again, but they've already reassured me that they do all they can to reduce fragrances. I guess since my throat doesn't close up, my reaction isn't significant. But it is to me. I still feel like I was run over by a bus since the appointment. And my face is so sore and tender.

Somehow, I'll have to make myself, because she is the only person trying to help me right now. I don't know if I'm hoping for an underlying autoimmune disease or not. I'm not sure how treatable most of them are. But it would least open up a few untried treatment options.

In the meantime, I'm back to living the unsettled lifestyle. Weekdays at mom's house, weekends at home. I think it spreads the misery around a bit. My husband can brew coffee and work late without feeling guilty during the week. My mom can do some cooking and baking during the weekends. It seems to be the best way to manage for now. I can't seem to tolerate staying in our apartment for more than a few days, for whatever reason (I do best when the window can be left open, if the outdoor air is clean.) The back and forth is pretty exhausting. The amount of stuff I have to bring with me is ridiculous! My food and Wilma's food. Mattress toppers and pillows. A big suitcase. Lots of medicine. Exercise equipment. Wilma, too! Wilma, by the way, is doing awesome. Almost 12 (estimated) years old. And as long as she has her prescription dog food plus some potatoes to keep her bowels regular, she's a healthy girl. She is still pretty miserable around my husband, due to her fear. That hasn't really improved at all. But she loves staying at mom's house with her cousins (Dexter and Lexie!).

Also, for two months now, I've been working through the physical therapy protocol in the EDS handbook. I've been progressing pretty slowly, which is recommended with EDS and widespread joint instability/weakness. So, the exercises don't look like much. They are working to stabilize my pelvis and lumbar spine. I believe they are helping, as I have less pain in my sacrum, and I can sometimes sit in a regular chair without a coccyx cushion. I just look forward to when I can work more on leg strength, knee stabilization, and shoulder stabilization. And of course, when I can reincorporate some cardio. But I'm following the program, and this is the recommended order of joint stabilization.

Apparently, I wrote a term paper today. I seem to be a bit manic, so you got the long-winded version. Sorry for taking up so much of your time. Thank you so much to those that support me and those that are following my progress.