Ready for my bubble now

I don't want this post to sound as negative as the last one. So, I'll include the positives first:

Cymbalta withdrawal is lessening, I think. The biggest thing that has stopped is the jolts/shocks/startles/zaps. Whatever you call them, they are miserable, and they are mostly gone.

In addition to this, I have had a lot less days with classic migraines. There is a chance my elevated serotonin levels were contributing to the frequency of my migraines. It's just a theory, but I'm holding onto hope that that's really what's happening. Of course, it's hard to be hopeful when I currently have a migraine with a pretty high pain level.

Unfortunately, I really don't have anything else good to report. Despite the lack of migraines, my facial pain has still been severe many days, so not really any better than a migraine. Maybe worse, because I can't treat it. (Well, I try Tylenol + Benadryl, but it is hard to tell if it does much. Maybe, it lessens the pain by 1-2 points on the pain scale.

What has progressed even further is my chemical reactions. It didn't feel like that would be possible, but rationally, I know mast cell disease can progress much, much further. I am aware of people that become allergic to water, anything that has ever touched plastic, and other people's body odor. So I knew it was possible to be more sensitive. I just didn't think it would be me, you know? Thank goodness, I'm not that far along, but I see the progression happening quickly. Where smaller and smaller exposures trigger more extreme and longer lasting reactions. Where it feels like you're always basically in a state of reaction to something.

My fear is becoming confined to a room, a "safe space," and having very few people that do not trigger reactions allowed in the room with me. I'm getting closer and closer to this every day.

Mast cell disease is often mild until exacerbated by trauma or stress. I have had symptoms of mast cell disease probably since birth. I had a major reaction to breast milk as an infant, as well as dairy milk. In high school, I developed what was called "asthma" to exercise and cigarettes. Now, I understand this was most likely anaphylaxis from a mast cell reaction. It makes so much more sense, looking back, since the inhalers never helped, but the shot of epinephrine from the EMTs always did. Then, I have gotten worse after each major surgery or trauma in my life. I developed new chemical sensitivities over time. This Cymbalta withdrawal is just the most recent of the many stressors on my body that seems to have progressed my mast cell disease.

I have major reactions to the smell of cooking now. I try to boil and steam most things. But it's hard to live with me due to this restriction. (It's also hard to be me-because I enjoy cooking and baking and making things taste good!) We also don't have a hood vent over our range, so there is no easy way to ventilate the kitchen.

Exposures that would have only caused me temporary discomfort previously now cause me major reactions that are multi-systemic. Example: I smell some scented laundry detergent for a few seconds, I end up having a full day of itchiness, sinus pressure, vertigo, facial pain, and diarrhea. I also sometimes get swelling in my eyes and lips, usually not right away, but by the next morning.

I had a crazy reaction to being in Whole Foods for less than three minutes. The smell of essential oils was very strong in the air. Ever since then, I cannot tolerate even the tiniest exposure to a scented oil. My head starts spinning instantly, followed by my sinuses filling and all the rest.

Beyond the reaction itself, every single exposure seems to lead to greater sensitivity. The only way to avoid the ever-increasing hypersensitivity is strict avoidance of anything that triggers a response. The more recent your last reaction, the more primed you are to react to the next tiny exposure. Your tolerance lowers, and your mast cells are on edge, ready to burst their contents all over again.

I now have multiple unscented products that cause severe reactions, including unscented Febreze and unscented fabric softeners. And sometimes, it's a mystery trigger. I know there is something, probably on someone's clothing, that is triggering me, but I don't know what it is. That's when I guess it's one of these unscented products.

Currently, I've been living at my mom's house again for almost a month. First, she was helping me through the withdrawal. But I tried to move back home, and ran into a new problem. I'm allergic to our heat. We have baseboard radiators, and I finally figured out that these were triggering a reaction, after spending 2 1/2 days basically manic. So, my husband and I spent a night doing a major cleaning. Over the year(s), the radiators collect a disgusting amount of dust. So, every time the heat cycles on, the dust gets burned off into the air. Even after a thorough cleaning, there's still a distinct smell of burning dust when the heat is on. So for now, we're running the heaters on high while I stay at mom's house to try to get rid of the rest of the dust.

I am completely exhausted and pretty terrified at what this progression means for my life.

I am hoping to be able to move back home soon, but who knows when I'll be able to tolerate it?

I also have no idea if the withdrawal is over. Is my current state of depression with frequent crying just my personality now? Is it just my remaining mood disorder, now that I am mostly untreated?

I'm still trying to figure out what to do about a new psychiatrist. My current one will no longer take my insurance, and I've also now had a major reaction to being in his office. I'm looking into doctors that offer phone and Skype appointments, but my insurance won't cover any of them. I'm not sure there is much of an option though, and my mental health does need some management, even if it can't come from SSRIs or SNRIs anymore.

I don't know how I can go into another doctor's office ever again at this point. Which is a pretty dangerous place for me to be in.

I'm going to share a few embarrassing pictures of mast cell reactions. I don't getting the usual flushing, but I do have allergic edema, with swelling of my face, sometimes swelling my eyes shut. It's not as severe as some edema, but it is a visible sign of my mast cell reaction and my facial pain.

I honestly have a ton more to write about in my head, but I'll save it for the next post. Thank you for reading and for the support. I'm so sorry I haven't gotten back to people that have reached out. I want to reach out, but I fear that I have nothing to say that isn't about my illness. I think I have nothing to contribute to the world but my illness experience. I barely even exist outside of my illness experience lately. I'll try to do better. But I am almost always either in a crisis or in a total fog, recovering from the last crisis. Maybe days like today, it's a little of both. Dealing with migraine pain that started last night, but also in a total fog.

Really, really long November Crisis: Serotonin and Withdrawal

Life is feeling utterly hopeless for me. My body was not made to tolerate this earth. I don't see a way out of this misery - the misery that has gone on for much of the last five years...and really - a lot of the last 15 years as well (since my Chiari symptoms began). I could even go as far back as 6th grade, if I'm being honest. When the depression and generalized pain and sickness began.


The current saga started November 9th, I think. I woke up with another hemiplegic migraine (the kind that looks like a stroke). It didn't last too long (maybe 2 hours), so I just went on with my day. Yes. This is actually the type of thing you can get used to. Unfortunately the standard 1-3 day migraines became frequent after that. The 12th-13th, a new one the 13th-14th. Again on the 16th and the 18th. The days in between had more generalized facial pain, but not true migraines, as far as I understand.


I saw my migraine specialist on the 16th. She gave me the lovely news that "We are running out of options." And she gave me a referral to a pain management office, where they can do more invasive treatments (that are bound to make me worse, since everything else seems to). I got the helpful diagnosis of "atypical facial pain," associated with my frequent migraines and chemical sensitivities.


I left the office feeling like I've already been through this letdown...because I have. I've had three doctors that are board certified in headache medicine give up on me. Dr. Semenov did send me home with a script for Gabapentin to try, as I requested. Unfortunately, I haven't been able to try it yet.


Because my serotonin levels were already elevated by that day. I had to use a triptan 3 times in 5 days. That, in addition to my other daily serotonergic medications, was too much for my body to take. By the 16th, my serotonin was too high, as indicated by the milder symptoms of elevated serotonin I was already experiencing. (These include low fever, feeling of burning up inside, agitation, restlessness, elevated vitals, and more frequent bms. In fact, I had discontinued my daily Miralax and my Midodrine to accommodate the change.)


And I may have been okay, if it weren't for the huge weather change on the 18th. As many people across the country experienced, it turned from early fall to winter overnight. A temperature drop of 50 degrees in Illinois. The head pain was beyond unbearable. If I could see any way around it, I wouldn't have taken anything for it, since I knew I was in a vulnerable state. But I truly could not handle the pain. I took my Relpax (the 4th dose in 7 days), and prepared for the worst.


Unfortunately, my fears were completely right. As the pain started easing, my serotonin levels soared. How do I know, when there is no way to reliably test serotonin levels, or diagnose serotonin syndrome? Well, I've been through it four times before, and it is quite predictable. Within an hour of taking the serotonergic medication that puts me over the edge, I develop a fever, intense burning throughout my torso, high blood pressure, racing heart, twitching, agitation, restlessness, and diarrhea. It is similar to other types of episodes (especially mast cell ones), but the fever and burning insides really stand out as specific to this problem. And they come on very quickly. Also, they are very predictably based on the number of serotonergic medications I've had to take.


Since then, I have been in hell. The only safe way to deal with high serotonin levels is to immediately withdraw all serotonergic medications. For me, this includes Cymbalta, Remeron, triptans, Flexeril, and Zofran.


As soon as I started skipping doses of my anti-depressants, I began experiencing symptoms of withdrawal, which can feel similar to the serotonin problem itself.


I'll try to sum up each day since then, as so much has happened.


November 19: No anti-depressants. Developed symptoms of withdrawal (diarrhea, restlessness, extreme sadness, huge temperature swings, tachycardia, brain zaps, body zaps, heart startles/shocks, and sudden vertigo/blaring ears). I also developed another migraine this day. My pain absolutely hit what I want to call a 10 for a couple of hours, and I wasn't allowed to take any medication for it. All I could do was moan and rock. Any sane person would go to the ER, but I knew I wasn't allowed anything for it, so I just rode it out.


November 20: No anti-depressants. Withdrawal persisted. BP very low now (85/55 after Midodrine and salt tablets). I was unable to sleep again this night due to withdrawal symptoms.


November 21: Tried a 1/2 dose of Cymbalta, at the recommendation of my psychiatrist, due to extreme emotionality/suicidal ideation. Unfortunately, I developed mild symptoms of raised serotonin, including a fever and twitching. In addition, this day, I contracted Norovirus, along with many other family members. Symptoms were very hard to sort out this day, because I became very dehydrated. During the night, I had a pounding heart and found my blood pressure to be 68/38.


November 22: No anti-depressants. Standard withdrawal symptoms. Heart rate was 100-120 most of the day. Had another sleepless night.


November 23: Nausea, flushing, sobbing, deeply depressed, suicidal ideation and panic. Tried a 1/2 dose of Cymbalta again. Within an hour, the burning and twitching started, along with the fever returning. This was officially my last try at Cymbalta.


November 24: Woke up with extreme panic/nausea and tachycardia again, from the restless nights and withdrawal. Developed a migraine with pain level 8, which I treated with Tylenol + Benadryl. Panic, depression, restlessness, insomnia, suicidal thoughts. Continued withdrawal.


November 25: Continued withdrawal. Migraine persisted all day at an 8. Moodiness, crying, suicidal ideation again. Appetite slightly improved, but I was still easily eating sub 800 calories per day. Developing a problem of hypomania at bedtime.


November 26: Still withdrawal. Barely slept. Awoke with heart rate 120 and extreme emotionality/suicidality. Struggled to stay conscious for much of the day. Fainted many times, no balance, many falls. Withdrawal and POTS were severe all day. Hypomania again at bedtime.


November 27: Continued withdrawal and no meds. Very low blood pressure day and persisting of all symptoms of withdrawal, including severe heart startles/shocks/head spins. Hypomanic in the evening again.


November 28: Usual withdrawal with low heart rate and blood pressure. Head pain increased from sobbing and the weather. Passed out constantly--every few minutes for several hours. Suicidal ideation while awake. Became hypomanic in the evening. Since my BP had normalized, I was able to exercise for 45 minutes. It was very painful, and there is not a lot I can do, but at least I tried. Became very hypomanic. This was the first night I took a 1/4 dose of Remeron. It did help with the withdrawal symptoms and sleep, but only lasted a few hours. In my notes, it says that I was exposed to a scent this day, but I don't remember which scent. Maybe a hair product. Facial pain did increase as a result.


November 29: I had an appointment with my psychiatrist, which I clearly needed. It was a pretty distressing appointment for several reasons. He told me that I will not be able to restart Cymbalta, and must endure the withdrawal as long as it lasts. He allowed me to try the 1/4 dose of Remeron, for now. But in the future, he's considering Lithium or Lamictal-something that will not raise my serotonin significantly. He also strongly recommended therapy. Therapy is just so tricky for me, because I have so much trouble going anywhere, due to scents. And I have a lot of sick days when I would have to cancel. He also mentioned looking into TMS therapy (transcranial magnetic stimulation) and ECT (electro-convulsive therapy). This is how I know my future psychiatric treatment looks bleak.


The main problem with this appointment was that the office was strongly scented. Even wearing my mask, I have been suffering greatly due to the scent. I'm not sure how I can go back to the office, although I'll be due for a follow-up in three weeks to reevaluate.


Finally, today, November 30: I had a brief exposure to essential oils in a Whole Foods (ironically, I was there to buy a specialty fragrance free product). The scent knocked me down so hard. I had been unsure if natural fragrances like this were a trigger, but clearly, at least some of them are. The pain is intense, as well as severe vertigo and nausea.


Unfortunately, as I have experienced before, the pain from a scent exposure gets significantly worse in the following 24-48 hours. And since I had already had a reaction yesterday, this could be even more prolonged. I no longer have any plans to go anywhere or do anything until I can get the facial pain back to baseline. I expect pain levels 6-9 for a while. Also, with my scent reactions, my eyelids have started swelling, especially the following day.


The withdrawal symptoms have lessened, but my emotional state is still extremely unstable. I break down and sob many times a day. Things that can make me cry to think about:


*everything that I have missed out on in life

*everything that I will miss out on in life

*what I could have been

*what my life could have been

*the level of suffering I have been through

*the amount of suffering I am guaranteed to go through for the duration of my life


[I have sobbed at Gilmore Girls and Christmas music. Gilmore Girls, because I related to Rory as a teen, and I will never achieve anything I thought I would. Christmas music, because there is reason to be joyful in this world. There are things to look forward to, but not for me.]


And honestly, none of these feelings are new. But being on the appropriate doses of my anti-depressants left me mostly accepting and numb to the pain. Without them, I feel the loss and the grief almost constantly.


But I understand that I will not be able to stay on these medications that help me maintain my mental well-being. Because it puts me at the top of my serotonin threshold. So, any migraine or pain medication can put me over the top into a dangerous place, as serotonin syndrome is life-threatening.


How will I live with so much emotional pain? Why must it be this way? Why can't I find a treatment for my physical pain either? I know it seems trite, but it is not fair. The tiny moments of life that I get to enjoy are few and far between. The rest is suffering. How could it be worth it?


I wish I could escape this personal hell. I wish there were a way out.


For now, I have to just lay low and wait for my body to find a new baseline, without treatment for my depression or my physical pain. Once I reach that baseline, I can try to prioritize what to try to deal with next:


*my joint instability and pain that is causing such reduced mobility, including my feet

*my POTS symptoms, which can only really be managed with exercise (Unfortunately, cardiovascular exercise is very difficult to achieve with my lack of mobility and high pain levels.)

*my emotional state-maybe I will try therapy or TMS at some point in the future.

*my chemical sensitivities--I have no real idea how to deal with this one. It seems to be a limitation I will have to accept/adapt.


In general, if I want to make contact with the outside world, I need to make sure that everyone is completely unscented, which is almost impossible to achieve. Fragrance free products are not always readily available, and usually more expensive. Especially hair products, for some reason, which have to be purchased online. Fragrance free detergents are readily available, but all fabric softener is basically the devil to me. Even skipping perfumes and colognes is very difficult for some people, as they are such a natural part of life.


Some unscented products I recommend:

Free and Clear Shampoo, Conditioner, and Hair Spray

Aveeno makes an unscented body wash

Dove makes an unscented bar of body soap

Free and clear laundry detergent, various brands

No fabric softeners or air fresheners of any kind

No personal scents


I've learned that even unscented products can emit harmful VOCs that may contribute to my overall ill health, but honestly, you can only do so much.


All scented products linger on clothes, skin, and hair. So if you use these products in your home, they will still bother me when I come into contact with you. See why I haven't been participating in social events all year?


I have no idea who would read all of this, but I am grateful that anyone still cares about my tiny little existence that has so little impact on the world.


Sorry for the tone of this. The depression of withdrawal is very intense.


I'll update sometime in December, when at least the withdrawal symptoms should have settled down a bit.

Getting very isolated

I've been dealing with plenty of medical problems in the last few months, as usual. I've been dealing with a lot of pain and am not coping too well, emotionally.

I use anti-histamines, mast cell stabilizers, and various masks. They reduce my allergic-type reactions to an extent. But nothing prevents or treats the facial pain, which lasts days or weeks after an exposure. The scent can be perfume, lotion, scented hair products, fabric softener, strongly-scented detergents, air fresheners, scented candles, smoke residue, or a million other things, it seems, that contain these irritants. I'm to the point where I rarely leave the apartment, and I have to be careful with anyone coming into our home.

I am so used to being stuck at home a lot, being sick, being in pain, and doing it all alone 95% of the time. None of that is new to me. It's been 14 years since my first surgery, 13 years since I got my first wheelchair. It is my life. But this fragrance problem is so isolating, so frustrating, and causes me so much pain.

I have multiple diagnoses that contribute to this problem, but no one can exactly say how it got to this point. The chronic migraines were certainly the start of the pain. And it is not unusual for migraines to be triggered by scents. Then, the fact that my migraines became so frequent and often intractable made it worse. The nerves in my face got irritated by the regular high pain levels from the migraines. Then, after my surgery in 2013, my chemical sensitivities got stronger. The biggest reaction was to the hardwood floor varnish in our old apartment (the one where we had to break the lease, because I never could stay there.) Ever since that, the sensitivity to fragrances has gotten stronger and stronger. And the nerves in my face stay irritated most of the time. They often hurt for no reason (like this past weekend). And my face is usually in agony with weather changes.

When I'm exposed to an irritant, the pressure in my sinuses starts immediately. I get a sinus headache and fill with mucous right away. Gradually, the pressure increases into a sharp pain through my trigeminal nerves. It used to be primarily the left one, but currently, it can be either side, or both. I also start to feel like I want to crawl out of my skin, and I feel desperate to escape. I can't think about anything else but avoiding severe pain from starting. I often cry in relief when I can get away.

And staying in a scented environment for more than a minute will increase my pain levels and sensitivity to migraine triggers for weeks.  An example is that I stood in Wilma's vet's office for about 10 minutes last Thursday. The air freshener smell was strong, but I needed to get her prescription food. I wore my mask, and tried to breathe through my shirt for another level of protection. It wasn't enough. By the time I got outside, I started crying. I knew I'd irritated the nerves. My pain level was through the roof all weekend, and everything had to be canceled. No plans. Forget about my to-do list. I couldn't do anything. And I had to just stay at home and suffer, mostly alone. The horrible thing is, Wilma's food wasn't there, so I need to go back into the office tomorrow again. I don't know how I'll do it.

So, I need to find Wilma a new vet. Even though I love her current vet, I can't tolerate the office. I've also been putting off my dental cleaning appointment, because I don't know how I can be in an office that long.

I tried to attend a wedding last month, but barely survived just the ceremony sitting in the back of the church, away from people. The are many events I have to miss and invitations I have to turn down.
I won't be attending holiday gatherings this year, because people's homes are full of scents. Cleaning supplies, air fresheners, scented candles, personal products, etc. It's a minefield for me. And unfortunately, even if the home were to switch over to unscented products in the week before the gathering, these types of smells linger. They literally absorb into the furniture, the carpets, the walls. These household fragrances are so potent, and made to be stronger and last longer. Downy unstoppables, Gain long-lasting detergent, Glade plug-ins, Yankee candles. They all have long lasting effects on a home. Making so many homes off-limits for me.

Even in my own home, I often find the need to ventilate quickly, by opening the windows and blasting the fans and the air purifier. I'm very lucky we found me a new car that is not scented! As even after 4 months, my husband's new car is still too scented for me.

In stores, scent marketing is big business. Each store has a signature scent which is pumped through the air vents. Seriously. This is why most stores are out of the question for me. Kohl's and Bed Bath and Beyond are major offenders. I can't return to them. I can survive Target if I wear a mask near the entrance and near the laundry/fragrance aisles. Walgreens is becoming too much for me to take.

Oh well. It's not like I've been well enough to work, so I don't have any extra money to spend anyway. I buy most of the essentials online. But it just makes me even more isolated. And some trips are necessary.

I hate that I'm terrified to go anywhere or be around people.

But from what I've heard, chemical sensitivities have the potential to improve, after you have avoided all irritants for a long enough period of time. I'm just not sure this is possible. Even the smell of cooking can be an irritant. I take Wilma outside and there is often cigarette smoke or laundry exhaust in the air. The neighbors may be painting. So much is just unavoidable.

I'm seeing my migraine neurologist this week. She also specializes in facial nerve pain. So, I'm sure I'll be trying something new this week. Most likely is Gabapentin. The other option may be Tegretol. I have tried Gabapentin years ago, but my pain is a lot different now, so it's certainly worth trying. I absolutely do not want to take any new medications, but I don't think I really have a choice right now.

Looking ahead, if these medications fail to help my problem, or if I can't tolerate them, there are few things left to try. Migraine medications help my migraines, but not my nerve pain (which I admit, even I can't always tell apart.) Botox made my nerve pain worse. My dysautonomia specialist doesn't think I'll tolerate anything invasive. I do terribly with steroids, and they also don't seem to help this pain. So nerve blocks are out. Nerve ablation also seems unlikely to be tolerated.

If it gets to that point, I'll look more into medical cannabis and low-dose Naltrexone. I could always try occasional opiate therapy again, only when the pain is at its worst. But of course, these prescriptions are hard to come by these days. And I have an annoying reaction to opiates, where it acts like a stimulant, so I have trouble resting and sleep is impossible.

Other symptoms I've been dealing with:

My joints are trouble, as usual. But my hip pain became so severe that I had to give up biking completely! Now that I haven't biked in two months, my hip and sacrum pain is almost completely gone. So, yay! I'm avoiding long-term joint damage. But, of course, without that regular form of exercise, my leg muscles are shriveling away, and my POTS is harder to manage. I haven't really figured out a solution yet.

I've been considering physical therapy for a long time. Especially with the new EDS PT manual available, and a recommendation for an excellent physical therapist near me. The main problem with this is that I have trouble getting out of the house, trouble getting to the hospital, and even more trouble being reliable for multiple appointments per week. I would need to cancel at the last minute at least half the time, due to severe pain or other symptoms. Also, my body is injured by so many seemingly simple movements, I'm just not sure if a regimented protocol could work for me. Perhaps if I just work through the chapters on my own, using skills from years spent in PT. (It's not recommended to do this, of course.)
        {For those who have asked, the PT manual is here: https://www.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880}

Walking was such a great form of exercise for me for years, until my feet gave up on me. They became totally disabling. The custom orthotics and compression socks in supportive sneakers only help so much. They keep me able to walk around my apartment, but don't allow for extra walking. (I still need to use my wheelchair to get around a store, or my feet become too painful to walk around the rest of the day.)

Then, the recumbent bike was an even more perfect form of exercise for me. At least 3 days per week, I could get on and ride for 15-45 minutes, depending on the day, and work up a good sweat. My heart was in good condition, and my legs were strong. This worked out so well, until the hip and sacrum pain became too disabling.

I also have very problematic knees. The tibiofibular joints are completely unstable, popping out every time I bend down. So squatting is no longer an option. Even simple bridges are too much of a strain. I have to wear knee compression, plus side stabilizing knee braces all the time now.

So, I'm trying to figure out what's next. I'm pretty sure I'm going to do a free trial at a local gym that also has a pool. Swimming can be tricky. Actual swimming is hard on the shoulders, and no good with a rigid neck. So water walking and gentle exercises are okay, but it's hard to really get the workout you need. Also, I'm not sure how I'll handle the chlorine, as I haven't been in a pool since my sensitivities worsened. I have had trouble in the past with warm water pools, as they lower blood pressure. But at the gym, I can also experiment with different exercise machines, and see if anything works for me. Maybe a rower, or an elliptical. But those can be hard on different joints, too, although they are low impact. I have to try, right?

I'm still doing some very basic exercises at home. Ones I've learned over my years in PT. But only the ones which don't cause further pain, which is really tricky. And I know I need to be doing so much more.

So, thanks for checking in with me. I hope I won't have to miss out on all of the holiday festivities.

When it's not one thing, it's another!

So, I got to be strapped to a table and treated like a lab rat a couple weeks ago.

I completed the autonomic testing with Dr. Barboi. It was pretty horrible! Going without my medications for 24 hours was the hardest part. I could barely be upright or stay conscious during that time, and I was absolutely miserable. My medications clearly make a huge difference in my quality of life and level of functioning.

The testing had 4 parts, all terrible for me in their own way. None of these tests would even feel like a strain on a healthy person, but they definitely showed my body's weaknesses.

First was the QSART sweat test. They applied a solution to several spots on my skin, then sent a low level of electricity to them. It was rather painful for me, but ended up being the easiest of the tests.

Next, we did a deep breathing test. You just take slow deep breaths for a couple of minutes, and they watch how your vitals react. I learned many years ago that I can't do any type of controlled breathing- for meditation or yoga- or I pass out. And that's what happened! Even though I was lying down, I came in and out of consciousness a few times. To be fair, I was nearly passed out before this test, so it didn't take much.

After that was the valsalva test. I had to exhale really hard for 15 seconds through a tube. Unfortunately, this action triggered my hemicrania facial pain to spike to a level 10. It really didn't come back down to below an 8 the rest of that day. Any type of exertion or straining triggers my pain, so this was absolutely horrible for me. I cried in pain for a bit afterward.

But, we weren't done yet! Finally was the tilt table test. I've had two TTTs before, which confirmed my diagnosis of POTS. So I knew what to expect. I was strapped to the table and tilted up to an almost upright position. Then, I just had to wait there while they watched my body's reaction. I got my usual hot flashes, nausea, vertigo, and lightheadedness. Luckily, this only went on for about 7-8 minutes before Dr. Barboi said he had seen all he needed.

I was then able to take my medication and drink water to help me recover. I felt significantly improved after a short time, although still pretty out of it and in severe pain. They wheeled me into the next room for my consultation with the doctor. He said the testing showed that I have another new diagnosis. Seriously!?! I was correct that at some point, my POTS has evolved into Hyperadrenergic POTS.

My basic understanding of the condition is this: I still have trouble with vasoconstriction, thanks to my stretchy EDS blood vessels. So, I still have problems pumping oxygen to my brain a lot of the time. But my body has started over-reacting to this problem with a surge of sympathetic activity. Epinephrine and norepinephrine are released. My body goes into fight-or-flight mode, causing heart rate and blood pressure elevation, hot flashes, enlarged pupils, tremors, shortness of breath, anxiety, and headache.

There are any number of triggers for this hyperadrenergic state; mainly being upright, exertion, stress, and any change my body has to cope with. This has been a major problem for me since my surgery in 2013. Any trauma or change in my medication or routine cause me to have trouble.

So, I'm not surprised to have a new diagnosis, and I always like to have an explanation for my symptoms. I also like when the testing proves my self-diagnosis correct. But, I am a bit exasperated to have another rare diagnosis to add to the list.

This definitely explains why I feel incredibly anxious the day after a restless night. My body really relies on quality sleep to maintain homeostasis. It also probably explains my body's reaction to new medications and dosage changes recently.

My well-being is a very delicate thing, and I get thrown off very easily. This is generally a lifelong condition, and can be progressive.

For treatment, we are starting with a new medication to manage my postural tachycardia- Ivabradine. We're starting with a small dose, so we don't overwhelm my system. Unfortunately, my insurance would not cover this medication (No surprise. It's fairly new in the US, and only approved to treat heart failure.) After looking into patient assistance programs, it became clear I needed to order it internationally. It's been ordered, but will take some time to arrive. I expect to be able to try it out in the next couple of weeks.

The doctor had other treatment ideas for me to try in the future, including adjusting my psychotropic medications. I'm pretty reluctant to try this, since I know my mental health is quite delicate as well, but I'm sure I will try it sometime when I feel stable enough.

With so many rare diagnoses, I'm always dealing with a number of problems. I never know when I wake up each day which symptoms will give me the most trouble.

My head has finally given me a little break from the relentless pain. I still have an ongoing low level headache with lots of sensitivities that trigger more severe pain, but it hasn't been my most prominent symptom most days. I'm very grateful for the break! It just doesn't always feel like one. My body never really gives me a break!

Currently, I'm dealing with a major mast cell reaction to a couple of mosquito bites. I've had to take two different extra anti-histamines every 2-3 hours just to not scratch all of my skin off. It has definitely interfered with my sleep.

I am constantly trying to avoid exposure to mast cell triggers. Mosquitoes would be a great one to avoid! But also all types of scents, smoke, and fumes. I have a new mask that definitely helps a bit. But still have to avoid known triggers.

I've also been having various joint problems. The most difficult one has been my shoulders, which don't want to stay in the socket. I've been experimenting with different mattress toppers to try to find something that allows me to lie on my sides to sleep. I'm waiting for a new, 4 inch memory foam mattress topper to try to help.

I've also had the usual pain in my knees, feet, and hips. Today, my right knee is the worst, but it could be something else tomorrow. I've also had a lot of pain in my hands, and some trouble with my spine and sacrum. I have a wide variety of braces that help a bit to wear as needed. I also have to be surrounded by pillows for support most of the time.

I had a flare up in my brain fog and trouble staying conscious for about a week. I had gotten a bit busy and neglected my biking a bit, which always has a major effect on how alert I feel. I've gotten back on track this week. It's just difficult, because I can't usually exercise on days that I have other things planned. So, I have to schedule several days off each week, and sometimes miss out on things in order to exercise.

I've had a couple of days where my digestive symptoms were most prominent.

It is all so frustrating. And it really is true that it's always something. So next time, instead of asking, "How are you doing?" you may as well ask, "what's giving you the most trouble today?"

At least when I'm not having too many other problems, I'm actually sleeping at night, and I don't feel too anxious or depressed most of the time. I know that this can and will change again, but I'm enjoying the relative peace, for now.

Surviving, often reluctantly

I think I have a lot to update on since last month.

Unfortunately, I had to discontinue the Indomethacin before I could reach the full daily dose. I had another adverse reaction. The kind where my chest starts burning, then it spreads throughout my torso. It's really intense, and Zantac and Tums don't seem to help it. It is still probably a GI reaction, but nothing seems to prevent it. And it is such a strong reaction that I'll do pretty much anything to avoid it.

So, I probably have the chronic headache condition called hemicrania continua, but I can't treat it. Great, right?

I've had daily head pain every day, made worse by varying triggers like scents, storms, lack of sleep, and exertion. I've pretty much been afraid to take any medication for it. My pain level has been between a 4 and a 7 most days, with some 8s. I am very grateful it hasn't been an 8 every day though. I've returned to about 3 distinct migraine days per week. Although, every day feels like I'm on the verge of a migraine. So, I never know when it will actually turn into one. My hemicrania pain is on the left side. My definite, throbbing migraines are on the right side. And some days, it just hurts all over, and I can't tease apart the different layers of headache.

I also had my appointment with Dr. Barboi last week! I was in a major flare the day I was there. I pretty much fainted while checking in, and my blood pressure was very low throughout the appointment. Dr. Barboi is wonderful. I don't know if there's much that can be improved upon in my current management of my illness, but he's going to try to help. But before he tries anything, he'd like to do a day of autonomic testing, including a tilt table test (my third). He wants to confirm that my current diagnosis for my autonomic problems is correct, so he has a good idea how my system is malfunctioning. I'm not sure it even behaves the same way every day. I have times where I seem to have a lot of hyperadrenergic symptoms with a lot of high numbers, and other times where my numbers are always really low. But I do acknowledge that the testing makes sense.

The big challenge of this testing is that you are supposed to discontinue all medication for 5 days prior to the test. He knew this would be too traumatic for my system, so he's allowing me to stop most medications only the day before and the day of the test. Even this will be a real challenge for me. I will definitely get sicker and get increased pain for at least a week afterwards. So, I'm really dreading it.

But it is really nice that doctor Barboi is close to home, and an expert in these problems. I'm so grateful he's willing to treat me and help manage things. It's also really nice that he seems to understand my body's strange over-reactions to stress and to medications. He said he could have predicted my DHE reaction, as well as the Indomethacin reaction. So, next time I want to try a new medication or treatment for one of my issues, I will definitely check with him first, to see if it's even worth trying!

Other than all of that, life has been a challenge this summer. Various things have been going wrong. Our cars both broke down the same week. Our air conditioner leaked and got the carpet in the bedroom moldy. This has triggered my allergies/mast cell symptoms to be worse, and I haven't figured out how to deal with it yet! Finally, we got a new car, and I'm allergic to the interior. My guess is that they polished the leather seats with something really smelly that I can't tolerate. I got a new mask, so I have to wear that in the car, even with the windows down the whole time. And even doing that, I'm pretty miserable in the car, so I'm avoiding our only mode of transportation, when possible. These stupid reactions are beyond frustrating, for both me and my husband, to deal with.

I haven't had to work much, so that's been nice, with all of this going on. I'm trying to get back into a routine where I get dressed every day, exercise regularly, keep the apartment neat, and actually get to the things on my to do list. It hasn't happened yet. I really haven't dealt with the insurance denial for my hospital bill yet, but it's on the list!

I'm mostly still in survival mode this whole summer. We did have a mini trip to Lake Geneva with family last weekend. It was really challenging, but a lot of fun, too! We're also hoping to plan a trip to Boston soon to meet my brand new little nephew, Lincoln!

Thanks so much for reading and following my progress. And thank you to all of my family and supporters.

I'll post again as soon as I can after my testing next week.

Hemicrania Continua

A week ago, in the midst of the severe pain, I read about a condition called hemicrania continua. It wasn't a perfect fit in describing my pain, but pretty close. Normally, you would get a watery eye or stuffy nose on the side of the pain. Since I do not have that symptom, the diagnosis was not obvious.

Hemicrania continua is considered a rare primary headache disorder of unremitting, unilateral head pain. The pain is daily and continuous. It is usually moderate intensity pain, with exacerbations of severe pain.

In order to diagnose this condition, you do a trial of a medication called Indomethacin. HC generally only responds to Indomethacin. Other headaches usually do not respond to it.

So, I contacted my doctor, and inquired about a trial of this medication. She agreed to it, and I started taking it that very night.

I am currently titrating up to the full dose, but have already experienced significant pain relief. I have not had severe pain since starting this medication. I have had periods of mild and moderate pain, but it has been a real relief.

My level of functioning has drastically improved. Light sensitivity is less and I've been able to leave the apartment 5 days in a row! I have also been able to ride my bike for at least 40 minutes at moderate intensity 4 days in a row! I'm glad I did not get too deconditioned. I'm not really having trouble getting through my workouts, which is really encouraging. I just need to keep up this routine of daily exercise.

In order to have a definite diagnosis of HC, the pain is supposed to be completely eliminated. We'll see if that happens when I reach the full dosage on Sunday. If it is determined to be HC, I will need to stay on daily Indomethacin indefinitely. No other medication has much established efficacy for the treatment of HC. So far, I'm not really having any side effects. I'll have to continue to take Prevacid and Zantac daily to protect my stomach from the medicine, and prevent and GI bleeds.

I really hope this ends up being the answer to my pain, and that the medication continues to work to reduce it. It is hard to know that this really is a permanent headache, and it will just be kept at a low level with medication. It's also scary that the pain is supposed to be completely eliminated, and mine hasn't been yet. If it is not HC, then what is there left to try?

Every time the pain increases a bit, I start to feel anxious that the medication is wearing off or going to stop working. It's hard not to, as the fear of returning to severe pain is ever present. I've definitely been a bit traumatized by my month of severe pain.

I know I will continue to have migraines and tension headaches, although I still don't know how to differentiate the different types of headaches very well. The all have similar triggers, symptoms, and locations.

But, I am so grateful that something has provided relief. I just hope it is long-lasting.

I'll be seeing my headache neurologist in August to discuss ongoing treatment.

I also did get an appointment made with Dr. Barboi, the dysautonomia specialist, at the end of this month. I'm looking forward to discussing many issues with him, as I'm still dealing with very unstable heart rate and blood pressure at times. I have had several episodes with hypotension and bradycardia that make it difficult to stay conscious, and my lips turn blue.

I'm still dealing with insomnia, unfortunately. The medication that was helping is just not helping enough any more. I'll continue working on this with my psychiatrist and hopefully get some input from Dr. Barboi as well. Most sleep medications give me trouble with hypotension and bradycardia lasting into the next day, so I am limited in what I can try.

I also just received a statement from our insurance company that my recent hospital stay was deemed not medically necessary. According to them, the initial treatment was successful, so I didn't need to be admitted for further treatment. That's funny, because I had severe pain almost the entire time I was there. So, they don't want to pay anything. And I have to figure out how to best deal with this.

Thank you so much for the support I've received recently. I hope to be able to continue to post good news for a while, as I need a break from all of these challenges!

The pain is me

Well, the feeling of constant panic has subsided. It could have been from any number of things (steroids, serotonin, high magnesium levels, just too many medications to tolerate). I also don't seem to be having the burning inside, which is definitely a relief.

I still get hot flushes, where my face feels really hot, but it's less intense and painful. The panic has been replaced with a low level of dread/fear in the pit of my stomach. It's pretty much always there. I just dread continuing to live with this pain.

The pain in my head and face has persisted. I can't say for sure that it's a migraine at this point. It's not actually throbbing. It's just constant pain that is worsened by sound, light, movement, exertion, and especially smells. It's in my temples and cheeks, the worst of it in my left cheek. It goes deep inside, feels like through my cheekbones and into the roof of my mouth. It just seems that this pain is a part of me now. Like my face doesn't know how to feel any other way.

The pain also just seems to go up and down throughout the day. Never below a 5. But it climbs up to an 8 or 9, sometimes for hours at a time. (I really don't use number 10 on the pain scale. It's supposed to be for pain that makes you pass out, and medical professionals don't seem to take you seriously if you use it.)

I'm taking nothing for it this week, because clearly my system got overloaded. So it needs a break.

But so do I. Do I even exist outside of this pain anymore? I'm trying to stay in touch with friends, and stay positive for family, but it can be hard. It's probably hardest on my husband, because he has to live with me.

I haven't started back on the Topamax (anti-seizure medication, migraine prevention), because I'm afraid it was contributing to the panic. I will wait a couple more days to be sure the panic is gone, then try it again. I really hope I can tolerate it. Because I know they are about out of things to try for me.

My POTS has been weirdly stable the last couple days. Don't know what that's about, as I haven't been able to exercise in weeks now. I tried once to ride the bike for about 10 minutes, but as soon as I get the blood pumping, my head pain increases again. So I had to ride in slow motion, basically.

My fears of this ever ending are pretty constant. It feels like I'll never be able to leave my little darkened cave (our apartment). I'm missing out on life--more than usual. I'm used to missing out on most things. But this is a whole new level.

The facial pain is so severe, it's getting painful to chew. (My jaw and bite are supposed to be quite healthy-thanks to orthodontics and wearing my retainers every night. No grinding or clenching.)

I'm not seeing the doctor again right away, because I need time to give Topamax a try.

I've heard about a sphenopalatine ganglion nerve block, where they thread a catheter up your nose and spray lidocaine, trying to numb a nerve back there. Not sure if it would be helpful for me, but it's something I haven't tried.

They said they could try me on Gabapentin again, but I don't feel really hopeful about that.

I'd be interested to know if medical cannabis would help this pain, but of course, afraid to actually try it, when I don't know what my reaction would be.

I could end up back at a pain management doctor, with an endless cycle of opioids. But I don't tolerate those very well either.

For now, I have to just keep existing like this. And try not to think what the rest of my life looks like, or what I'm missing out on. Just survive.

Luckily, I have great screen dimmers on my phone and tv. So, I can usually tolerate some amount of entertainment. I feel like I've seen every show ever made that isn't too loud or hard to follow. I'm currently watching "Death in Paradise," "Army Wives," and "Gilmore Girls." With some random movies mixed in at times.

Thanks for checking in with me. I may be up for visitors at times this week, but they would need to be incredibly unscented.

DHE Infusions

Well, I ended up being admitted through the emergency room on Friday night. Basically, it seemed clear that the migraine wouldn't break on its own, and the steroid pack hadn't worked. Also, it would be easier for everyone if I got an inpatient stay done over the weekend. (I couldn't imagine having made it through without my husband there 18 hours a day!)

When I was admitted through the emergency room, my blood pressure was actually high (155/95), which is really unusual for me. And my heart rate was about 100. I had also had a panic attack while packing for the hospital, due to past trauma and my fears of something going terribly wrong.

So, I got my first DHE treatment at 11:00 on Friday night, along with some Benadryl, Toradol (anti-inflammatory), and Zofran (anti-nausea). We were up late that night, as I wasn't really admitted until 2:30 a.m. That was a rough start for my system, to only get a few hours' sleep that night. I still don't have the ability to nap during the day, no matter what. (After years of hypersomnia, my body has gone the other direction, and can't sleep without sedatives.)

The next infusion ended up being at about 10:30 a.m. on Saturday. After this, my heart rate was resting in the 150s, still with elevated blood pressure. But no one seemed too worried. I felt very on edge, but I assumed that was due to my anxiety about being in the hospital, as well as the fact that my POTS was already flaring due to lack of exercise for weeks and lack of sleep the night before.

I developed severe nausea from the DHE, which is expected. The Zofran was managing it well. My migraine pain was very high on Saturday. Before my third infusion of DHE, I received my Zofran IV around 6:00. I started developing a feeling of burning in my chest. Gradually, the burning spread until it felt like my insides were on fire throughout my body. Then, I developed the restlessness. My body couldn't stop twitching and moving. Benadryl IV did not relieve my reaction at all. Valium did calm it down.

So, no one knew what could have caused the reaction. Of course, it's not a normal reaction. And it's more unusual that it didn't happen until after my third dose. My theory was that I developed a mild case of serotonin syndrome. Since I already take other medications that raise serotonin levels, it is definitely possible that the additive effect of multiple doses led to the reaction. The doctors seem to think this is a likely possibility.

It was four years ago that I had the last suspected serotonin reaction. That time, it was a combination of my usual anti-depressants, plus frequent triptans and Tramadol. I had fevers on and off for a week, reaching 104 degrees at one point. Then, my body developed the restlessness, twitching and moving day and night. No one thought of serotonin syndrome at the time. But I was put on Valium, reduced my dose of Cymbalta, and laid of the migraine and pain medications for a while. It did resolve, but not with the help of any doctors. That was another time I was on my own to figure out what is wrong with my body.

All migraine treatment was discontinued at this point on Saturday night. My migraine had been reduced, but still persisted.

Sunday morning, Dr. Barboi came in for a consult. He had been monitoring my care during my stay, so he came to check on me. I was glad to meet him, as he is the POTS specialist I've been trying to see for months. I couldn't even get put on his wait list before this. He had a lot of ideas, and seemed genuinely intrigued by my complex medical state. He said to me, "you know you're a mutant by now." And I do know that.

He thought it was best that I be discharged as soon as possible, because my body just won't be able to handle any of these intense interventions. Which is pretty much what I was afraid of going into it. But I agreed about being discharged. I wanted to get home to sleep desperately. My heart rate was also sky high Sunday morning (170 just changing clothes). I knew getting into a lower stress environment and sleeping in my bed would help with that.

So, since then, I've been dealing with constant symptoms. My whole system is really angry right now. I still have a migraine. Today is day 17 with this one. Pain level has been between 5 and 8 since getting home. I haven't taken pain medication, because there probably isn't anything that would help that I can tolerate.

I'm still trying to sort out the rest of these symptoms. I'm still getting the burning sensation in waves, but not as intensely. I've tried to reduce my serotonergic medications, in case it is still from elevated serotonin levels. But last week, when I was on the steroids, I was getting hot flashes and burning sensations. And even before that, I was getting slightly elevated temperature and facial burning at times. It could be a mast cell symptom, but I am on the mast cell stabilizers. I really don't know where it's coming from. The burning sometimes feels like my skin is burning, but sometimes like my insides.

In addition, I'm still having major problems with adrenaline, constantly. It's that stomach-dropping sensation. Of course, this started before my inpatient stay, too. With my more frequent migraines, and so many unavoidable migraine triggers, I've developed a ton of anxiety around that. Then, this endless migraine started. Then, I was put on the steroids, which made me really hot and panicky, as well. Then, of course, the hospital stay was extremely stressful, as well as the lack of sleep and the intense medications. But now that I'm home, I'm still having the adrenaline sensation all day, and most of the night. And every little worrying thought is making me panic. I tried a tiny dose of Clonidine today, to block some of the adrenaline. It does seem to be helping a big with the intensity of the panic. But I can't take more, because of my tendency toward low blood pressure.

However, my heart rate and blood pressure are back to my usual, prior to the hospital. Heart rate elevated to the 80s or 90s at rest, but not higher than that. Blood pressure a little low during the day and very low over night.

I've worked so hard to get to this place in my life, where I can work a little, socialize a little, and working on maintaining my health the rest of the time. And I've been content overall for a few years now. But it feels like I could be losing everything. I can live with a lot of things. I've learned to accept so many daily symptoms and medications as part of my normal, and take them in stride to a large extent. But my current state is not tenable. I'm crying many times a day. I'm panicking frequently. I'm not sleeping without extra sedatives. I'm in a lot of pain. And I can't commit to do anything but hide in my darkened apartment, trying to stand it all.

I'm having so much trouble sorting out right now which symptoms are coming from what. Should I be taking less Cymbalta? I'm already taking less Remeron. Should I keep taking the Topamax, or could it be contributing? Is there any point in trying a triptan or a Toradol again, and is it even worth the risk of raising my serotonin levels? There doesn't seem to be a doctor that can help me sort this out. Potentially Dr. Barboi could, but who knows when I'll be able to get an appointment with him. But also, it will just take some time and some experimentation for now. Because I don't have typical reactions to anything. It is just really hard to be patient when nothing seems to be helping, and I'm still in a migraine state 24/7.

The thing is, I know that there are people with chronic intractable migraine. It's a permanent migraine state. And this could certainly be how it starts. Long-term migraines often don't break without these combination treatments. And my system doesn't seem to be able to handle them.

Hopefully, I will be able to tolerate the Topamax as a preventative again soon. But that won't help for a while. It seems that nothing will help for a while.

I've definitely lost weight in the last week, as all my clothes are loose. I haven't been able to exercise in weeks now, which is horrible for my loose EDS joints and for my POTS.

Please understand if I am not able to attend social things for a while. I'm trying to figure out how to get out of this hole, so I can semi-function again. I haven't been able to care for myself, cook food on my own, or clean up our apartment. I just want to get back to where I was. I'm really sad, and I'm really scared. I want to be a whole person again, and I want to be able to be there for those I love. I just hate this. And I do not see the light at the end of this tunnel right now.

Status Migrainosus

Well, the migraine has not gone away. I'm almost done with the steroid pack, and the migraine persists. Pain level is between a 5 and a 7 today. It's much better than the 9-10 I was at before the steroids, but still hard to manage. I'm still very light and sound sensitive, and my body doesn't tolerate exertion. When the pain has lasted this long, they call it status migrainosus. I am stuck in a migraine state.

I saw the neurologist yesterday, and she was wonderful. She started me on Topamax, as well as the supplement Butterbur. I've been on both of them in the past, but we're trying again. But both of those take a month or two to become effective. So, they can't help with my current state.

Basically, I'm going to try to make it through the weekend with Toradol and Flexeril, and just try to wait it out. If that doesn't work, the doctor has recommended an inpatient stay for a few days for a DHE infusion treatment. This medication can break a current migraine state, as well as kind of give your brain a "reset," so you won't be so prone to migraines for a while. The medication is given by IV every 8 hours for 2 or 3 days. Side effects can be pretty intense, so you need to be inpatient to be monitored. Of course, with my medical trauma and very high maintenance body, I can't imagine being a patient in a hospital again. But....I also can't imagine tolerating this migraine much longer.

In addition to all my stuff, Wilma's refusing food again today. And apparently her vet is in the hospital.

That's the update for today. I'll update again if I have news.

Breaking a migraine cycle

I have had a migraine every day since my last post. It has been hell. It started with a perfume trigger on Tuesday. The migraine started that night and went into Wednesday. Thursday, I got a new migraine. And Friday night, another one. I think the thunderstorms were to blame. Saturday, we attended a wedding. There was festive music and plenty of perfume. So, many more triggers. I had already used a triptan to treat the previous 3 migraines, so I wasn't allowed any more. (Puts you at risk for medication overuse headache- which is really just endless intractable migraines.) I tried Toradol, Flexeril, and Benadryl. But the pain was severe, and has persisted.

Monday, the doctor called in a steroid pack for me. The steroids have made my POTS go nuts, as well as interfered with my sleep. My blood pressure, heart rate, and body temperature have been all over the place. The steroids cause severe anxiety. Thank goodness, the pain is easing up, but not gone yet. I'll be on it for a total of 6 days, tapering off gradually.

I also can't exercise during any stage of a migraine. So, I haven't exercised in over a week. And that makes my POTS so much worse. I can exercise with significant joint and muscle pain. I can exercise with high or low blood pressure. I even ride the bike when I am barely conscious some nights. Because I know I'll feel better the next day. But, I can't exercise with a migraine.

You would think I would be used to severe pain, but somehow, it's always worse than I remembered it. Or maybe the pain really does get a little worse each time.

Next time the pain is this unmanageable, I think I'll go into the hospital for an infusion of medicine to abort the pain. Because this drawn out process has been really difficult. I'm still so grateful I had something to help with the pain.

But I am left with even more crippling anxiety about my migraine triggers. I'm terrified to be around people or go anywhere that may be scented (which is anywhere). I don't want to commit to attend anything, or invite anyone into my home (i.e. my safe space). I don't even want to cook in my home, as the tiniest bit of smoke can trigger another migraine.

The stupid thing about chronic migraines is that the more migraines you have, the more susceptible you are to triggering another migraine. Especially in the time immediately after the acute pain phase (the first 24-48 after the pain dulls). That is when you are extremely vulnerable to triggering a new migraine. And for me, the acute pain phase is always at least 48 hours if the migraine isn't treated. Just because I get away from the trigger, doesn't mean the pain will start to go away. The pain will actually steadily increase for hours. And I can NEVER sleep off a migraine. It has to be treated. But you can only safely treat 9 migraines per month with abortive treatment. I have had to push this to 12 lately. But anymore than that, and you will get stuck in a rebound cycle of endless pain.

Luckily, I happen to have an appointment with my migraine specialist tomorrow. It was supposed to be the day for my fourth Botox treatment, but instead, we'll be reevaluating my preventive treatment. In my mind, I'm ready to go back on Topamax. It is an anti-seizure medication that is nicknamed Dope-amax for its tendency to cause major brain fog. If you know me at all, you know I suffer from major brain fog on a regular basis. I spend a lot of time staring, unable to think clearly. But, when I took this medication several years ago, it significantly reduced my migraines. And my current state leaves me desperate enough to try it again.

We'll see if the doctor agrees with this idea, or if she has any other ideas.

For now, I am relieved the pain is reduced to a moderate level, and is no longer severe. But I can't say the migraine is gone. I'm in the postdrome stage. I still have light sensitivity and a lingering achy tension in my head. I'm also terrified to go anywhere, see anyone, or make any plans in this state. And the steroids are only exacerbating these fears.

In addition to all of this, my girl, Wilma has been sick. And I haven't been well enough to get her to the vet. At least we're keeping each other company.

I'll update as soon as I can after tomorrow's appointment.

Doing Better :)

I am happy to report that I have made some huge improvements since my last post in April! The single thing that has made the biggest difference for me is sleep. I was prescribed an extended release Ambien, and I am actually sleeping again! Now that I get enough sleep most nights, I am not having any adrenaline surges or anxiety! I'm also not feeling depressed anymore. It is such a relief! I truly have reclaimed my sense of well-being. I've also left the house alone a few times.

I've been able to exercise more, so my POTS symptoms are doing well.

I have tried Clonidine, but it seems to lower my blood pressure too much. And when my blood pressure is very low, my heart over compensates by pounding, and the pounding heart wakes me up. So, I've discontinued this. I also haven't needed my beta blocker, since I'm not getting the adrenaline surges.

I understand that Ambien is not the best medication to be on regularly, but at this point the benefits are far outweighing the costs.

My migraines, unfortunately, are persisting at the same level of frequency and intensity. I'm triggered mainly by weather changes and perfumes. I've started getting more visual auras preceding my migraines. It's really annoying. I'm seeing my neurologist again in a couple weeks, to see if we can come up with any ideas to try. I'm a little worried she'll say that she's out of ideas, as I've heard that from headache specialists before. But hopefully, we'll come up with something to try.

We have a couple small trips planned this year, which is something I wouldn't have been able to do when I wasn't sleeping.

I'm still not satisfied with my level of wakefulness on an average day. On days when I don't have a lot of interaction with people, I tend to spend a lot of time staring. I would still like to be put back on a stimulant, at least for certain days. But I don't have a doctor currently to prescribe it. And my PCP doesn't like prescribing stimulants. My psychiatrist may consider it in the future.

I still don't have an appointment with the local POTS doctor. I just want to be put on the waiting list, but I can't seem to get a call back from his office. I think it has to do with me already seeing another neurologist in the practice, but she's only treating my migraines, not managing my POTS. This is an item on my medical to-do list.

I also need to see my PCP again soon. I'm hoping to get a handicap placard from him, as I'm frequently using my wheelchair or walker.

My joints are still being difficult. They seem to take turns causing me trouble. My knees were terrible for a while, but they've eased up a bit. My SI joints, spine, shoulders, and feet also get pretty bad at times. I don't have a doctor managing my EDS, so I currently just look up PT exercises online and buy OTC braces. There really is a major shortage of EDS doctors. Dr. Tinkle's wait list is closed to new patients, because he is in such high demand. I was diagnosed in Baltimore, but can't reasonable travel back there just to manage symptoms.

I'm beyond frustrated that with my migraines being chronic, I can't take any pain medication for my body aches and joint pain.

But honestly, even with all of these troubles, I just feel relieved that I'm not stuck in the depressed/anxious hole I was in when I wasn't sleeping. I feel somehow capable to cope with all of these other issues.

More Challenges

Both the limitations in my life and the degree of suffering are staggering lately.

Yes, I understand that many people have it worse than I do. I'm still able to leave the house, barely. I don't have a migraine every moment of my life. I can still mostly live independently, which makes me less of a burden on others. (Although, I have trouble leaving the house alone.) I am beyond grateful for these things.

But I am still dealing with more than I know how to handle a lot of the time.

I've had symptoms of hyperadrenergic POTS and mast cell activation occurring regularly, almost constantly. I'm fairly sure these surges of adrenaline are the reason I can't sleep and the reason I feel a physical sensation of doom so much lately. My blood pressure actually elevates and I feel overheated, although my hands and feet stay cold. They're pretty classic symptoms.

They mostly started for me after my last surgery in 2013. I believe the trauma triggered the worsening of my mast cell activation, and the hyperadrenergic symptoms that go with it. These symptoms eased off for a couple years, but are back in full force.

I'm working on seeing a more local POTS doctor, since I can't see Dr. Grubb again any time soon. Hopefully, I'll be able to get in with Dr. Alexandru Barboi soon. In the meantime, I'm hoping Dr. Grubb or my local PCP can help me manage these symptoms. The usual POTS treatments of Midodrine and salt don't address this. I need to go back on the beta blocker, and hopefully try a medication called Clonidine, which can reduce the elevated adrenaline that is making me so miserable. Perhaps, this will also help me sleep better, and I won't need so much of the sleep medication. If I can sleep better, my migraines will reduce as well. Almost all of them are triggered by restless nights or weather lately (or both!).

Clearly, I also need to get back to the allergist/immunologist and try the mast cell stabilizers again, as this could really treat the root of the problem. But just scheduling and making it to appointments is such a challenge right now. I'm doing my best to get it all done.

I'm done with Botox. I've officially failed that treatment. I have a delayed reaction to the injections of intractable pain that I simply can't go through again. Especially since, after 3 treatments, my migraines are just as frequent and severe.

I'm having a tough time emotionally right now. I'm so grateful for many things in my life, but the depression and anxious symptoms are really weighing on me right now. I'm literally afraid of bedtime, since sleep is often so stressful, and has such an impact on the next day's suffering. I hope that I'll be able to reclaim my sense of well-being soon.

Thanks for listening, and thank you so much to the many people in my life that are helping me through.

Can I be a hermit, now?

I haven't posted in 4 months, so I have way too much to say in one blog post. Here goes anyway:

I am about ready to give up and become a hermit. Seriously. This scent sensitivity continues to get worse, and I just about want to say that I'm never leaving the house or allowing anyone over again. I would also need to quit my job, and cancel all social commitments and future travel plans. It's just hard for me to fathom how I can keep going like this, when every exposure to perfume seems to cause a more intensely painful and intractable pain that lasts longer each time. The pain is most intense in my trigeminal nerve, just like many of my migraines. Unfortunately, migraine medication does not help this pain. Also, the few times I have tried stronger pain medication, it doesn't seem to have much impact on the pain either. After a perfume exposure, the pain can last for days on end. And most people that trigger my pain will never know it, because it's way too awkward to say anything. And if you know me, you know I can hide my pain very well for short periods of time. I am truly becoming paralyzed by this symptom. As soon as I smell a triggering scent, I can feel the nerves in my head starting to hurt. I start to feel incredibly anxious, desperately needing to get away from the scent. Unfortunately, in work situations, at doctor's offices, and even some social situations, fleeing isn't possible.

I have no idea how to continue in my life with this ever-worsening symptom. I wear a mask at times, but I can't tell if it helps. I've experimented with peppermint oil to try to trick my brain into not noticing the offending scent, but I can't really tell if it helps either. Mostly, the only answer is to escape. But again, that isn't always an option. I've already told all of my friends, family, and piano students about the issue, but it obviously continues to be a problem. Part of it, I'm sure, is simply people not realizing they are scented, or forgetting to skip the perfume before they see me. And I understand that it would be hard to remember when perfume is a part of your routine. I can't blame anyone much. I just have to suffer for it.

And of course, it's not just perfume. It can be hair spray, air freshener, scented candles, or anything else with a scent, it seems. Safe air is neutral air, with absolutely no scent.

I cannot figure out if this is a problem with overactive mast cells or not. I'm not currently on the mast cell stabilizers, but I am taking the H1 and H2 blockers. I don't think they really help this pain, so I'm afraid that nothing will, and I don't know how to face a lifetime with such frequent level 8-10 pain that cannot be treated in any way. This is another issue that may cause me to look into medical marijuana, which may or may not be an option or be helpful for this pain.

This shows the trigeminal nerve, where so much of my pain is. Especially the maxillary branch, which is the part that goes over the cheekbone.

Okay.

I do have other updates, but this is the biggest problem this week.

I saw Dr. Grubb in early January! It was so good to see him. He gave me a few hugs during the appointment. I really love him. I wish I could see him way more often, mostly because I love him so much. We talked for almost an hour. The primary issue we dealt with was my insomnia. He feels strongly that I need to treat my insomnia effectively, even if that means taking sleeping pills most every night. But, he gave me a list of ideas to try.

1. Rozerem- a synthetic melatonin, safe for longterm use. Unfortunately, I already tried this one, and it didn't have any noticeable effect.

2. Ambien CR- Since Ambien works for a few hours, Ambien CR would be logical to try. I've tried it, and it helps. But, my insurance doesn't even cover the generic version of it. So, I'll work on getting approval for this if the insomnia persists. (Although I feel like I want to save this to be a last resort, since I have several decades left in which I may need help sleeping.) And it is considered habit-forming.

3. Xyrem- can only be prescribed by a sleep medicine doctor. It is a highly controlled substance, but it is quite safe and effective. It's not considered habit-forming. I may consider a sleep medicine doctor in the future.

4. If nothing else works, consider a lower dose of Cymbalta, as it may promote wakefulness.

He also suggested that I continue to take a stimulant for wakefulness and daytime activity level. I don't currently have a doctor willing to prescribe me a stimulant, although it is a pretty standard part of my POTS treatment. I'm going to have to work on this.
-I may be able to get my psychiatrist to come around and prescribe a stimulant (probably a short-acting one like Ritalin, so it won't interfere with my sleep).
-I may be able to convince my PCP, but he doesn't like it, because of its risk for addiction.
-Finally, I may need to see a local POTS specialist, Dr. Barboi. He would probably also be able to help manage my migraine treatment, so it's certainly an option. Mostly, I don't want to pay for and go through a bunch of autonomic testing again, so I'm putting it off.

Sorry for the disorganized nature of this post. It makes sense to me, but it's kind of a funny format.

Dr. Grubb also recommended a new probiotic to try for my ongoing GI issues. Solgar Probi 30 billion is the one he recommended. I'm trying it now.

Finally, Dr. Grubb said that Xolair injections may be the most effective treatment for my overactive mast cells.



Next, I'm still dealing with issues with my knees, hips, and SI joints. I'm wearing braces daily and trying to do exercises that might stabilize the joints. I may need to go back to PT, but with EDS, physical therapy is always risky. Any exercise may make things worse. It's kind of a hallmark symptom of EDS. There is a new book published which thoroughly describes appropriate treatment of EDS for physical therapists. If I can find a PT willing to read and use this book to guide my treatment, I will definitely try it. The book is "Living Life to the Fullest with Ehlers Danlos Syndrome," by Kevin Muldowney.

Beyond this, I may need to work on an appointment with a local EDS doctor. There are not many. There's mostly only Dr. Brad Tinkle. I have heard there is a 2 year wait to see him. But sometimes, with a doctor's referral, you can get in sooner. My only hesitation is based on fear. I'm afraid, based on some stories I've heard, that he may not acknowledge my EDS, now that my Beighton score is lower. I'm only in my early 30s, but my joints have stiffened up as they've become more painful with age. And the test for EDS mainly tests elbows, knees, and small joints of the fingers. My elbows and knees barely hyperextend anymore. A fellow blogger has recently posted about the problem with the Beighton and Brighton scores for EDS diagnosis: https://mastcellblog.wordpress.com/2016/02/16/bbscores/.  I couldn't agree more. I'm so glad I was diagnosed by Dr. Francomano in my 20s, when I was more flexible, with a Beighton score of 8/9. Anyway, this is my hesitation to see Dr. Tinkle. I don't want him to question my diagnosis. I just can't handle being questioned by doctors anymore...at all. But, when it comes to understanding EDS and managing its treatment, there are so few choices in doctors. I'm constantly looking for someone local that could manage my EDS treatment. I feel completely alone in trying to prevent the progressive damage of my joints, but stay independent and active. It's just really difficult, and I'm doing my best. I wish I had help.

Finally, I had my third round of Botox treatment for my chronic migraines today. We decided to skip the injections in my neck, since I already have such a weak neck. Maybe, this will reduce my initial negative reaction to the procedure.

I'm hoping the weather will mellow out a bit, to give me a break from so many migraines, too.

Okay...I can't imagine anyone read all of this. But at least I got everything out of my head, so I don't have to think about it anymore. Just deal with it.

Thank you so much for those that care and support me along the way here.

P.S. I'm currently very worried about a long-time online friend. Her name is Lisa. She has essentially all of the same diagnoses as me, but her mast cell disease is the worst known case. Her doctor has determined that she is considered terminal at this point in time. You can read some of her story at Caring Bridge, although she hasn't been well enough to update in a few months. http://www.caringbridge.org/visit/girlinchair.  I'm getting updates through her Facebook group of supporters. I wish I could meet her, but I believe she is in Florida. I wish even more I could do something to help.