I'm back ... but having a tough time

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

Hey George,

It’s nice to hear from you but not about this crap that still plagues you so much. Sorry to hear your still in the shit with it all.

George, have you got other aspects of your life under control? That is you are NOT using caffeine in any way or taking painkillers or using any nasal sprays. How is your sleep with all of this going on? Do you sleep solid through the night? And what about all other potential triggers around you? You’ve no doubt done your best to work this out but just checking to make sure you haven’t left any stones unturned or haven’t missed anything that is undermining the meds.

Hang in there champ … Scott

George!

I’ve missed you champ. I had hoped you were off the board because you were better so I’m very sorry to read that you’re not doing so well.

I don’t want to pry but I recall you’ve had some issues with your parents before, that they don’t seem to “get” what you’re going through. I wonder if there’s some way you can get them to understand - would you think there’s any benefit in them visiting this forum or reading one of the books on the topic?

Scott mentioned caffeine and other pain meds. There’s some new information he’s posted recently about a doctor from the UK, Nicholas Silver who has a different take on dealing with MAV. Well, not completely different but a more stringent approach to the lifestyle and med stuff. Quite austere it is. There’s an audio file that’s pretty interesting. Might be worth a listen.

Anyway George, hang in there.

Vic

I would email or call Dr Hain and tell him that your parents are confused. Let him know that the Xanax is helping. He’s not going to want you to come off something that works. If I keep my emails succinct, he generally emails me back pretty fast.
Good luck,
Claudia

I haven’t seen that other people here take this drug, but Librium 5 mg (chlordiazepoxide) each night helps me a lot. I take it every day, and it doesn’t make me sleepy anymore. It’s like Xanax, but it has a much longer half-life, so I don’t feel it wear off each day. I also take 50mg amitriptyline with it.

I also take 150mg Effexor evary day. Dr. Hain seems right about the dose. Up to 75mg each day helped me, but going up to 150mg just gave me extra side effects. I’m about to try decreasing it.

Keep fighting. I’m still struggling with this thing, but at least I’m working and doing normal things now.