Been hit again

Hello everyone,

I have been dealing with MAV for the past six months, after a bout of viral infection. My sx’s are constant 24/7 dizziness, a weird gnawing feeling in my head, sound sensitivity and light sensitivity. I had terrible anxiety and depression when this started. I was never officially diagnosed with MAV, but was put on 25 mg of Amitriptyline and 250 mg of Depakote by a family doctor back home. I took these for 2 months, with slight changes for the better towards the end of 2 months. I stopped taking them as I was prescribed them for only 2 months.

A month after stopping, the dizziness really increased again…this time after a flight. A week ago, I started Nortriptyline 25mg, but it only made the dizziness worse. My doctor asked me to move to Ami 25mg as it agreed with me before. I did for 2 days, and the dizziness went through the roof. I’ve never felt this bad, almost fell down twice. I stopped Ami for now, but am completely lost about what to do. Why would something that didn’t have a bad reaction before have this reaction now? The worst part is that the Xanax that I was taking for emergency purposes has stopped working too.

The worst part is that I do not have a doctor to work with. I am willing to try any medication, but there seems to be no one I can see who can put me on the trials necessary. Does anyone know of a good doctor in Atlanta for MAV? I have a phone consult with Dr. Hain in Chicago, for September 15, but what am I to do in the meantime? I am trying to see Dr. Tusa at Emory, but it is going to be out of pocket ($500) just for a consult. Is it worth it?

I’m sorry if it seems like I’m venting. Please help.

— Begin quote from "bandip"

Hello everyone,

I have been dealing with MAV for the past six months, after a bout of viral infection. My sx’s are constant 24/7 dizziness, a weird gnawing feeling in my head, sound sensitivity and light sensitivity. I had terrible anxiety and depression when this started. I was never officially diagnosed with MAV, but was put on 25 mg of Amitriptyline and 250 mg of Depakote by a family doctor back home. I took these for 2 months, with slight changes for the better towards the end of 2 months. I stopped taking them as I was prescribed them for only 2 months.

A month after stopping, the dizziness really increased again…this time after a flight. A week ago, I started Nortriptyline 25mg, but it only made the dizziness worse. My doctor asked me to move to Ami 25mg as it agreed with me before. I did for 2 days, and the dizziness went through the roof. I’ve never felt this bad, almost fell down twice. I stopped Ami for now, but am completely lost about what to do. Why would something that didn’t have a bad reaction before have this reaction now? The worst part is that the Xanax that I was taking for emergency purposes has stopped working too.

The worst part is that I do not have a doctor to work with. I am willing to try any medication, but there seems to be no one I can see who can put me on the trials necessary. Does anyone know of a good doctor in Atlanta for MAV? I have a phone consult with Dr. Hain in Chicago, for September 15, but what am I to do in the meantime? I am trying to see Dr. Tusa at Emory, but it is going to be out of pocket ($500) just for a consult. Is it worth it?

I’m sorry if it seems like I’m venting. Please help.

— End quote

I saw Dr Tusa in 2009 and was not impressed. He basically told me sounds like migraine and told me to come back and see him when I was having an attack. Okay I am an hour away and that if there is not traffic… Did not think i needed to be on a medication everyday…but to take Klonopin as needed…for me it would not be worth the out of pocket expense but that was my experience. He may be a good doctor but my visit seemed very rushed and the bedside manner just was not what I needed for my issues. I have been to four neurologist in Atlanta and have yet to find one that really seems to have an idea about what is going on because nothing show up on their test. Very frustrating to say the least. Best of luck and let me know if you find someone in the area.

Scott previously recommended this doctor in Atlanta.

Sharon King
Atlanta Neurology
993 Johnson Ferry Road, N.E.
Building F
Suite 120
Atlanta, GA 30342
404-256-3720

This is not what I want to be reading a week after booking a flight!!!..Why dont you try lowering the Ami dose and take half of it for a few days? Sorry I cant answer your question though

Thanks all. Timeless…I completely understand. I just wish there was a doctor in Atlanta who knows what this illness is about. I’m willing to try the meds…but am unable to find a doctor with a treatment plan for me. George, Sharon left Atlanta Neurology unfortunately. I’ve seen her replacement and she didn’t really have a plan either. Thanks CJL…I did try the half dose yesterday. I think I tolerated it better, but still not sure why I should not be able to stand the full dose now when I did earlier.

I have a phone consult with Dr. Hain on Sept 15. Does anyone know how these phone consultations work? Does he prescribe medications long distance? How does one stay in touch with him after the first consult? Just hoping that this is worthwhile and not one of those appointments where we end up leaving hopeless. I’ve had way too many of those and just cant take one more.

HI Bandip,

I actually went from Las Vegas to Chicago to see Dr. Hain. He was really great…after reading so much on this site, and several books, and going over his website (very informative) there wasn’t much he told me I didn’t already know.

He advised Effexor for me, but I didn’t do too well on it. I am not sure I gave it a fair shot, as I was very nervous about taking it. I tried Amitriptyline after that and was able to tolerate it, but it did increase my dizizness. Once I started Cymbalta, I was able to handle the medicine well enough to get to a therapeutic dose (40mg).

Have you tried an SSRI? I know Celexa is usually helpful and fairly easily tolerated.

I think it’s worth going to see a doctor who is familiar with this stuff…after all…we’ve all spent money on things besides our health, and I"m sure we’d give them up in a heartbeat to feel somewhat normal again.

What are your main symptoms?

Kelley

Kelley,

Thanks for the reply. I tried Prozac when I had a 4-month bout of this dizziness back in 2008. It was prescribed for the depression I developed from the constant dizziness. I tolerated it pretty well. However, I took it for only 2 weeks before I went back home from the US (I’m from India). Somehow, miraculously I felt better the day I landed in India. I’m not sure to this day if it was just seeing my entire extended family at the airport that made it go away.

This time around, I’ve only taken amitriptyline and depakote, both of which I’ve tolerated well. I also think they may have made me a little better. Except in the past 2 weeks, where the ami threw me for a loop with increased dizzies which have continued.

My symptoms are constant 24/7 floating feeling, a gnawing sensation in my head, heavy head, bad sound sensitivity, feeling like the world is somewhat unreal, blurry vision, feeling like I have to rest my head against/on something all the time.

Are SSRI’s better than SNRI’s (Effexor)? Has anyone had success with Effexor?

Priti

WEll, as you may know, Dr. Hain says that Effexor is the best for Migraine prevention. I think there are several people on this board who are taking it in varying amounts. Effexor is basically an SSRI at the lower doses, as it does not start hitting Norephinphrine until the dose increases. It hits serotonin at the low level Hain encourages, which is 37.5mg.
Your stuff certainly sounds familiar to many of us on this board.
Not sure why the AMi changed on you…must be frustrating…it increased my dizziness too, but a lot of these drugs get better over time.
:slight_smile:
Kelley