Hey,

I went to Johns Hopkins last year for possible vestibular/MAV problems. I was diagnosed with MAV and to follow the Migraine diet by Dr. Buchols.

It worked. I got back to 95-100%. But as of right before the holidays my lightheadedness and disequilibrium is back.

I did have a cold that I got over pretty quick.

I am now back on the diet 100% but symptoms are starting to get worse.

Tomorrow I will be going to Mt. Sinai hospital for an evaluation and possibly RX

Any advice from anyone who has been at this point or is taking meds for the MAV let me know what to watch out for.

Thanks

Hi there,

Fraid I don't have a lot of advice as am in the same boat as you. Ill 3 and a half yrs, much better last yr, migraine dx. I too came down with a cold before X Mas, was ok ish for two wks, slightly worse, then had a stressful event and wham, big time lightheaded, spacey, surreal etc going on 3 wks now.

I was wondering, how soon after the cold did this dizzy hell set back in again for you? Was it straight away?

I have tried various drugs for the MAV, no success so far, have now just started another one, topamax, also known as topiramate. The one bit of advice I would give is if they want to prescibe you one try to avoid the drugs that are known to have high sedation side effects. A neurologist told a friend of mine who is also a mav sufferer that sometimes sedating drugs are fine for migraine sufferers without vestibular issues, but less so for those who are dizzy as sedation can simply increase the dizziness which means they can't tolerate the drug. This was certainly my experience with some of them. Some people on here have had a really good experience with pizotifen, u might want to try that. It didn't agree with me, but then I think I was unusual in that.

Hope your consult goes well. Let me know about the cold, am really curious, as I think it played a part in the resurgence of my symptoms although am puzzled that it kicked in a fair way after the cold had stopped.

best,

The cold came before xmas. Symptoms started about 2-3wks after that.

I was on topomax, I dreaded it. It made my life a lving hell. I wish you good luck with it.

I have previously been on amitriptiline. All of these meds I did before the diet. The diet worked great.

I just don't know why this set back.

I never really thougt about the cold, but I will let you know what the Dr.'s say tomorrow

Hi there,

Please do tell me about your topamax experience. Would love to know. What happened? how long were u on it? What dose? I've read a lot about it, good and bad, so you won't scare me, but haven't heard from that many people who have tried it with MAV. Would be really grateful if you'd let me know your experience. I'm weighing up whether to stay on it, mixed feelings about it so far.

I am also on a version of the diet, and was doing fairly well for a long time. Although I kept getting relapses for a few days at a time and still got bad headaches and as I said have now relapsed. Only using the diet and no drugs I did feel a bit like a sitting duck, any stress or lack of sleep could always push my into symptoms. Maybe if I'd gone on a super strict migraine diet, but to be honest I tried that and just couldn't actually work out what to eat any more. I avoid caffeine, chocolate, alcohol, cheese and some other things that seem to trigger problems for me,

best,

best,

Topomax,

I felt disoriented, depressed, closed in like in a box, stressed and extremely emotional. I forget the dosage though.

The last time I was on it, I talked to my Dr. and was crying to him telling him that I could not do it anymore.

The side effects were worse than my symptoms.

HI there,

Just wanted to firstly say thanks for letting me know about the topamax.

Secondly I had a look back at your past posts as was curious as we have a similiar history.

You were originally found to have a 30% vestibular deficit in one ear and diagnosed with VN which you recovered from. Then developed vestibular migraine after that. It is possible that this latest attack is decompensation of the vestibular injury due to the cold (decomepensation frequently happens after a cold) and not to do with a reoccurence of the migraine.) In fact I also probaby have vestibular damage plus migraine and ironically this may be what has happened to me.

Do let us know what the hospital says. Hope it goes well,

best,

It's worth noting that directional preponderances and caloric weaknesses on ENG are not necessarily caused by something other than migraine (menieres or VN). Somewhere around 20% of MAV sufferers have abnormalities on ENG.

There are a number of known possibilities as to why this occurs. The first is that vasospasm reduces blood flow to the inner ear/vestibular nerve resulting in cell death.

The one I tend to believe myself (there is plenty of evidence for it) is that MAV is caused by a channelopathy (a genetic mutation causing dysfunction of ion channels on the surface of cells). Episodic ataxia is an example of a known channelopathy (the exact genes and the result of the mutation are well known). The symptoms of EA are strikingly similar to migrainous vertigo, although ataxia is present instead of vertigo. Episodes of ataxia are triggered by many of the same things as migraine - stress, startle, certain foods, lack of sleep etc. Many of them develop a baseline ataxia to go with their episodes of ataxia.. much like many with migrainous vertigo get a 24/7 dizziness in between more acute episodes of vertigo. They also often have nystagmus, nausea and both MAV and EA can be treated with Acetazolamide which improves the function of the dysfunctional ion channels.

Anyway, the brain and inner ear share a number of the same ion channels. It is possible that pure migraine is caused by spontaneous dysfunction of ion channels in the brain, pure vertigo caused by spontaneous dysfunction of ion channels in the inner ear (which can result in cell death) and a combination of both features caused by simultaneous dysfunction of both. We'll know within 2 or 3 years if this is the case thanks to Dr Baloh's team in California.

The short of it is, you can't assume vestibular damage is caused by something other than migraine.

Adam

I went to my Dr. today at Sinai.

He told me that he feels that I am affected by stress over the last few months along with weight gain.

He told me that he can guarantee that I will be 100%, not 99% 100%. He said he deals with these cases all the time and that all of his patients recover 100%.

These Dr's at Johns Hopkins are the best in the country. I feel confident in the questions he asked me and how he pieced everything together.

I am to lose weight, decrease my stress as much as possible for the next 2 wks. And follow the Migraine Diet.

If after 2 wks I am still feeling poor. He gave a subscription for Verapamil and to email him. I will then go and see him in April

He said there are so many ways to treat this that he knows I will be ok.

Sounds like excellent advice.

Even the simple things like stress reduction, a healthy diet and regular exercise can make a significant enough difference in migraine - especially if you are close to not being able to function properly, it might help drag you away from the edge. For some it will eliminate symptoms completely.

If that doesn't work, there is a huge number of preventative medications available - I have tried somewhere around 15 of them myself. I currently still take some of them.

Hi Miwexler,

Really nice to hear that you had such positive input from a doc. Even to hear this news second hand cheered me up. The neurologist I saw was, unfortunately, an unfriendly piece of work - didn't like him at all. It makes such a difference if someone is upbeat and encouraging.

Hope you are feeling better soon and great to know you have someone on side who is keen to help you to recovery.

Were you aware you had experienced an unusual amount of stress prior to the relapse? I ask because I experienced some work related stress just before this latest bout, so it's interesting to me that he thought stress was playing a big role.

best,