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.
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.
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.
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.
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.
I had widespread burning sensation, facial pain, hot face and eyes, and agitation at times.
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.
I was feeling more normal, with minimal symptoms! It was such a relief. But of course, short lived.
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.
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.
|Photo Credit: http://www.raynersmale.com/blog/2016/11/4/pathophysiology-symptomology-of-migraine-headaches|
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.
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!
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.
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.
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.
Migraine and burning persisted. Cold symptoms persisted. Itching from mosquito bites and hives had finally eased to a tolerable level.
Migraine was lessening. Some episodes of burning. Cold symptoms persisted.
Shorter episodes of burning. Mild facial pain. Cold symptoms persisted. That night, I started a new brand of generic Ambien.
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.
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.
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.
I got a corneal abrasion upon waking in the other eye. There was more mild burning, lethargy, and body pain.
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.
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.
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.
Still reacting to the hot sauce. I awoke with pounding heart and low blood pressure again. I had headache/facial pain all day.
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.)
There were storms and a large drop in barometric pressure. I had severe facial pain all day.
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.
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.
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.
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.
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.
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.
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.
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.
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.
I had headache, nausea, chest burning, and widespread body pain (especially knees, wrists, pelvis, and muscles).
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.
Headache, dizziness, fatigue, brain fog. Short episode of a swollen, red upper lip. I had trouble sleeping that night.
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.
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.
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.
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.
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.
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.
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.
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.
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).
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.
I had mild heartburn and nausea, as well as facial pressure and excess mucus. I was having bladder retention, too.
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.
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: http://www.integrativeendo.com/specialties/#mcd) 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.