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.

Friday, June 17, 2016

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.

Wednesday, June 15, 2016

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.