What has been your most effective MAV treatment?

Specific Illnesses & Conditions VM/MAV
1

Hi all,

Adam posted a similar poll in 2007 but there are many more members here now and we might get a better idea of what treatment has been working best for people with MAV. If you can post a little detail below about the specific drug or lifestyle change it will make for a good sticky I think for people who want to check out treatment options. Each person can choose up to 3 things.

  1. Lifestyle changes are number one –– regular sleeping pattern essential, avoidance of food triggers, stress management.
  2. Exercise –– this is problematic because it can so easily kick off an episode. Must be consistent and build it incrementally over time. It pays off.
  3. Valium –– the only benzo that works for me without side effects. Used only when necessary.
  4. Cipramil –– cleaned up dizziness and a lot of MAV but SEs were intolerable in the end. Currently using low-dose Paxil which gives some mood control but little migraine control at the current dose.

All of the other meds I’ve tried (between 15 and 20) from other classes have made me feel much worse in one way or another.

Best … Scott 8)

2
  1. Prothiaden (Dothep) for overall condition
  2. Lifestyle - avoiding Coke Zero, aiming for regular sleep, not too much alcohol
  3. Valium for anxiety flare ups.

The following things make me uncomfortable (like I may get a migraine) - flashing lights, flickering fluro lights, very hot glarey days - especially when followed by a thunderstorm.

Vic

3

I voted Lifestyle changes because that it all I have used for treatment. I have not trialled any of the medications. My main trigger is fluctuating hormones during menopausal transition. I am hoping with my fingers crossed that as my body recognizes my new hormonal levels and my brain settles down, that this MAV will just burn itself out (say a prayer for me that I am right). I did try Lexapro at the very beginning (3 years ago). I tried 1/8 of a pill (not sure the strength) but it made me so nauseous I spent the whole day vomiting and dry heaving. Never tried it again after that. I try to get to the gym at least 4 days a week where I do about 40-45 minutes of aerobics, some yoga stretching and weight resistance machines. Sometimes I have to drag myself there but I always feel better after I leave. I did do yoga in a class for about a year and a half but now that I know the “postures”, I enjoy it better doing it on my own, so I can take my time and change positions slowly and not bring attention to myself in a class but it does help to loosen up all the muscles I have been clenching all day to help me keep my balance.

Other triggers are bright lights, loud noise, smells, etc. but I can control my environment by shutting off lights (my boss actually had some of the flourescent lights turned off over my work stations), turning the TV down, sitting quietly, etc. I am functional and work full-time, but I do wish every day to have my old life back and I am hoping it will happen soon. I have to say that just learning about MAV and what it actually does to the body lessens my anxiety about the whole thing and I use common sense and try not to panic about what I’m feeling. This website has been a godsend and helps me retain my sanity about all this.

Hope everyone gets to feeling better and at some point there will be an official medical protocol for treating MAV and more doctors become aware of it.

Scott, thanks for all your hard work on this site. You are helping many, many people.
Joan

4

Hi All

  1. Pizotifen and Citalopram 100% resolution and control of symptoms for 18 months (could be coincidence as didn’t work on current MAV bout).
  2. Limited success on Topamax. Symptoms are variable with some improved days, but not what I would call ‘good’ symptom control overall. Functional dizziness - fight through.
  3. Regular sleep (disrupted sleep causes more imbalance).
  4. Exercise is painful initially, but brings benefit later. Must keep moving!
  5. Keeping a positive frame of mind and trying not to let the illness control my life. The more worked up I get, the worse my symptoms (anxiety playing a role).

Hope this helps; nice one Scott.

Luke

5

Hi Everyone,

I voted for:

Lifestyle changes which includes improved diet, getting at least 8 hours sleep and sticking with the same sleep schedule. Keeping the stress at a low level. Working only part-time. Exercise also helps my overall health … stairmasters, bicycling, and Tread Mill. Other machines can make my condition worse so have to pick the ones that are not bothersome. If I’m having bad days then I leave these machines alone.

Xanax has also been a big help for me on a daily basis…it helps to reduce the rocking motion.

Verapamil also helps with the tension on the right side of my head.

Joe

6

Am afraid what has helped me most over the last 20 years has been painkillers in the form of half a syndol 3 times a day, adding the odd stemetil. I have been on Serc (betahistine) for 10 years as well.

Christine

7

Well, it’s not surprising I guess that lifestyle changes came out on top – as in avoiding triggers followed by the benzos. Gotta love the benzos. I know I’d be dead meat without valium.

Scott

8

Hey Scott,

I’m surprised there were only 5 people who responded to your post.??..You would think that knowing the number of folks who belong to this forum others would have shared.

But i feel like you…not really surprised…Lifestyle…and Benzo’s work the best.

Joe

9

Lifestyle triggers don’t seem to be much of an issue for me. If I’m symptomatic stress and Coke Zero can ramp up the anxiety and really hot, storm brewingish days can spark one of my “regular” migraines but that’s about it. Most of the time I get stalked by MAV terrorists - I never know when they will strike.

Vic

10

Hi Joe,

I think it needed to be released from being a “sticky” thread. Hoping to get more feedback now. Tricyclics too seem to rank highly as well as do the Ca+ blockers.

Scott

11

My Neuro put me on Nortriptyline, starting with 10 mg to eventually 30mg. It’s been almost two weeks so far with no results yet. I will post if anything changes when I reach 30 mg.

12

Thanks Steve – let us know how you go over the next few weeks. These meds can sometimes take a while to kick in. S

13

Most of these I haven’t tried. I checked the valium box, though I use it infrequently. Also, meclizine, but I didn’t see that listed. Like Steve I just started nortriptyline but haven’t noticed anything yet except I can’t sleep and have heartburn.

As far as lifestyle changes nothing there seems to help except to never, ever be a passenger in a car. But I don’t think that is what you meant by lifestyle changes. I have changed my diet (but that is mostly because I was originally diagnosed with Meniere’s so I gave up sodium and all that goes with that) but that doesn’t seem to make any difference. Most of the big triggers I avoid and have avoided even before this started - no caffiene, wine, MSG, cheese, etc. I exercise 20 minutes a day, 5-7 days a week, but that doesn’t seem to make a difference either.

14

— Begin quote from “scott”

Well, it’s not surprising I guess that lifestyle changes came out on top – as in avoiding triggers followed by the benzos. Gotta love the benzos. I know I’d be dead meat without valium.

Scott

— End quote

Scott,

Valium is the only relief I get once I get dizzy. I take it as a last resort though, because it will put me to sleep, even at low dosages.

Brian

15

Hello,

I got some relief from my lifestyles changes. I don’t drink very much anymore and I stay away from most trigger foods.
However I feel 50% better on Citalopram and I’m currently trying Neurontin without success… so far.
Lets chat soon Scott.

Emma

16

Hi Emma,

Is Citalopram, Cipramil?

Christine

17

Hi Christine,

Yes it is. :slight_smile:

Emma

18

Hi Christine,

This one has many names:

It is sold under the brand-names Celexa (U.S. and Canada, Forest Laboratories, Inc.), Cipramil (Australia, Brazil, Finland, Germany, Ireland, Norway, Sweden, United Kingdom, New Zealand), Citol, Vodelax (Turkey), Citrol, Seropram, Talam (Europe and Australia), Citabax, Citaxin (Poland), **Citalec **(Slovakia, Czech Republic), Recital (Israel, Thrima Inc. for Unipharm Ltd.), Zetalo (India), Celapram, Ciazil (Australia, New Zealand), Zentius (South America, Roemmers), Ciprapine (Ireland), Cilift (South Africa), Citox (Mexico), Temperax (Chile, Peru, Argentina), Citopam, Akarin (Denmark, Nycomed), Cipram (Turkey, Denmark, H. Lundbeck A/S), Dalsan (Eastern Europe), Pramcit (Pakistan), and Celius (Greece). Humorup ( Argentina).

Gotta love the last one: Humorup LOL … how about Dizzydown?

Scott

19

Thanks Emma, Scott,

Was wondering whether to try this one again. I had Cipramil drops years ago but had a continuous migraine (unbearable one) for the 3 days I was on it, and then just stopped. I have a friend on 20 mg of this and she is doing very well. I believe you did well on this before as well, Scott?

Christine

20

Hi Christine,

Yes, this drug did keep MAV under pretty good control but only the dizzy/ cognitive part of it. It made the headaches and neck pain far worse, killed my mojo, and I put on weight. If it weren’t for the increased pain I would be on it again. I would just take the mojo hit and control my weight but I simply can’t face all that head pain again.

Unfortunately, I haven’t found another AD that I can tolerate at a therapeutic dose.

Scott