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.
