Thursday, December 1, 2016

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 would 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.

Monday, November 14, 2016

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.

Saturday, August 27, 2016

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.

Wednesday, August 3, 2016

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.

Thursday, July 7, 2016

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!

Saturday, June 25, 2016

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.

Wednesday, June 22, 2016

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.