Thursday, December 15, 2016

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.

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 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.