Thanks for everyone’s support last week.
Unfortunately, things are no better. In fact, I’m feeling even worse than last week.
looking like I will need to try MAV meds again in a few weeks. I’ve tried so many already with zero success. So terrified that this is going to be my “life.” The torture of my symptoms is intolerable and unrelenting.
Among the medications that I’ve tried have been nortriptyline. After surpassing 20mg, I only got worse and worse. I got up to 50mg where I sat for a long time with zero improvement. I am currently on 20mg, because that dose seemed to be at least helping the head pain, but hasn’t even done that since I delivered my second son. I am wondering if it makes any sense to transfer to amitrtipyline or pitzotifen (although not in US maybe there is a way to get it - my husband even joked and said he would go to europe for it if it means getting me well - we serioiusly would do anything to get me well). Keep in mind, that amitriptyline might not be a good idea as the side effects of nortriptyline were extremely harsh for me and amitriptyline has even more side effects, reportedly. also worth mentioning that I tried celexa at a high dose with zero success. Wondering if trying let’s say pitzotifen is just beating a dead horse at this point and to move on and try a new class. I’ve already tried calcium channel blockers and beta blockers. my initial plan was to take topamax, but now I am so confused as if I do, indeed, have “low pressure,” this drug will make things worse. however, then again, doesn’t seem like CSF treatment worked so maybe I shouldn’t worry about that. of course, I will discuss all this with my neurologist, but any input would be appreciated. I am so desperate to get my life back. I don’t know how I can possibly live with these symptoms much longer. I do know I have no choice but to live like this.
I’m just so scared, and as more years pass the possibilty of having to live like this seems so very real. I feel like this illness has beaten me down, and I want nothing more than to beat this terrible illness.