Well, I’m posting again after not doing so for a long time. I saw Dr Hain today, so I guess now’s as good a time as any to share what’s going on with me.
I’ve been on 100 mg of Topamax for 3 months, and it’s not working. It’s also had a few side effects at 100. But I told Hain I wanted a “more aggressive” approach than before, so instead of losing the Topamax entirely, he reduced it to 50, and added nortriptyline. (We start at 10, go to 20, and aim for 50 of that as well, most likely.)
Yes, there are a number of success stories with nortriptyline, and I’ve got two good drugs together … yet I can’t shake this awful feeling that I’m destined to remain like this. Maybe it’s the fact I’ve failed 8 drugs already – including Effexor, verapamil and Topamax – Hain’s top three, the “heavy-hitters.”
And to top it all off, my folks erroneously convinced Hain that I’m exceedingly fatigued, and that it’s Xanax’s fault, so he said to significantly reduce (slow taper) or even leave it entirely. I’m on a fairly high amount, but without it, my vertigo symptoms are so out-of-control that even just “existing” – doing nothing whatsoever – has nonstop, 24/7 dizziness so incredible that there aren’t even words to describe the intensity. It’s hellish.
What my folks see as “fatigue” is my frequently lying down, mostly in late afternoon + evening. I also lie down after simple things like walking the dog, etc. What they don’t “get” is that (1) even simple activities make me dizzy afterward, and (2) by late afternoon, the Xanax has worn off, and lying down is the only position in which I’m not symptomatic.
Unless these new drugs WORK, I don’t know how I’ll handle anything without the daily symptom med. I know how I feel without it — it’s utter hell on earth. I think my dizziness is much too intense to deal with, without assistance, so what am I supposed to do, now that everyone wants my only lifeline yanked out from under me?
Aren’t I just a happy person to have back around?
George