Both the limitations in my life and the degree of suffering are staggering lately.
Yes, I understand that many people have it worse than I do. I'm still able to leave the house, barely. I don't have a migraine every moment of my life. I can still mostly live independently, which makes me less of a burden on others. (Although, I have trouble leaving the house alone.) I am beyond grateful for these things.
But I am still dealing with more than I know how to handle a lot of the time.
I've had symptoms of hyperadrenergic POTS and mast cell activation occurring regularly, almost constantly. I'm fairly sure these surges of adrenaline are the reason I can't sleep and the reason I feel a physical sensation of doom so much lately. My blood pressure actually elevates and I feel overheated, although my hands and feet stay cold. They're pretty classic symptoms.
They mostly started for me after my last surgery in 2013. I believe the trauma triggered the worsening of my mast cell activation, and the hyperadrenergic symptoms that go with it. These symptoms eased off for a couple years, but are back in full force.
I'm working on seeing a more local POTS doctor, since I can't see Dr. Grubb again any time soon. Hopefully, I'll be able to get in with Dr. Alexandru Barboi soon. In the meantime, I'm hoping Dr. Grubb or my local PCP can help me manage these symptoms. The usual POTS treatments of Midodrine and salt don't address this. I need to go back on the beta blocker, and hopefully try a medication called Clonidine, which can reduce the elevated adrenaline that is making me so miserable. Perhaps, this will also help me sleep better, and I won't need so much of the sleep medication. If I can sleep better, my migraines will reduce as well. Almost all of them are triggered by restless nights or weather lately (or both!).
Clearly, I also need to get back to the allergist/immunologist and try the mast cell stabilizers again, as this could really treat the root of the problem. But just scheduling and making it to appointments is such a challenge right now. I'm doing my best to get it all done.
I'm done with Botox. I've officially failed that treatment. I have a delayed reaction to the injections of intractable pain that I simply can't go through again. Especially since, after 3 treatments, my migraines are just as frequent and severe.
I'm having a tough time emotionally right now. I'm so grateful for many things in my life, but the depression and anxious symptoms are really weighing on me right now. I'm literally afraid of bedtime, since sleep is often so stressful, and has such an impact on the next day's suffering. I hope that I'll be able to reclaim my sense of well-being soon.
Thanks for listening, and thank you so much to the many people in my life that are helping me through.
