New here, Could I have MAV?

Hello everyone,

My name is Eric, 33 years old, live in Scandinavia, and I think I might suffer from MAV. I have searched all over the internet for people who were experiencing the kind of ‘boucing’ ‘rocking’ feeling when walking and only when walking. I’ve described it to walking on a trampoline to neurologist and there’s a thread here, where LOTS of people describe exactly the kind of feeling I have, where as it is nowhere to be found other places on the internet.

My story is like this:

I have suffered from unilateral strong headaches since 2011, from out of the blue. They turned into muscle like chronic tension headache with monthly or so attacks of migraine like type. Very bad, sidelined me. I also suffer greatly from neck pain and stiffness.

Then in November 2013 I had my first bout where out of the blue the ground started bouncing, rocking, moving when I walked. I did not have problems when sitting, driving. At the same time I had bad fatigue, sleeping problems and neck pain.

Eventually after a month it went away.

Then in May 2015 it hit back with a vengance and has been there ever since. The same fatigue, the same pain, all of it. I have also had some other symptoms like joint pain, muscle pain, now some mild myoclonus (shock jolt like movements in wrists, ankles, like before you fall asleep). And the fatigue, the ever present overwhelming fatigue. This has made me scared for cancer too.

I am being followed in neurology department, but they’re not very helpful so far. I have a bunch of white spots in my brain, so that complicates matters. I am not convinced they’re the cause though, as they haven’t changed in 4 years.

I also tested positive for Lyme in a normal test (none of that special lab), because my doctor thought my symptoms could sound like lime. IgG was positive, IgM was negative, suggesting past infection or late infection. I am waiting to go down that road, because of all the weirdness and politics, but eventually if nothing else is found I will pursue it.

In any case, this is the first place I’ve found where there are others who have the exact same feeling of walking on a trampoline, so it can’t be completely wrong.

I appreciate any comments and suggestions, if there is medication I can try, please let me know.

Best,

Eric

Hi Eric.

Sorry about your suffering.
If you had the traditional test come positive for Lyme, you should go down that route, why not? You know you have it. Btw, Lyme can cause the white spots in your brain, as well. They’ve been shown to disappear following Lyme treatment.
Lyme causes overwhelming fatigue in some people, too.

Best wishes.
Asli

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Hi Eric,

I feel like I’ve been contributing too much to this forum (!) but I’ve found it really helpful just like you–I was so relieved to find a group of people who are suffering from the same thing and it was encouraging that many people on here definitely recover to 90-95%. I’d recommend using the search bar to look up medicines and see how people respond to them, so that you can be reassured to persevere through side effects.

This article is pretty informative about MAV I think: http://www.enttoday.org/article/migraine-associated-dizziness-is-elusive-to-diagnose/2/

You need to see a good neurologist or migraine specialist.
I have tried topamax which does help with reducing the rocking sensation - 50mg apparently over the course of several months has worked for some people on the forum. Some people had to go higher. It’s a very slow acting med, and you have to be patient to see the results at each dosage.

I have a sulfa allergy so I think I’m not going to be able to tolerate topamax though - I was getting some strange eye issues with it. Good news is that I feel almost normal on 10mg of nortriptyline (it gave me back my sense of stillness and reduced some of my noise/light sensitivity) but I find that I do get a rocking sensation/bouncing head when exposed to too many fluorescent lights or backlit screens (like at a movie theater or in a conference setting at work). I do think I need to go up to 30mg or something to see more relief in more intense stimuli situations, it’s just that I’ve been not wanting to get any more side effects since I’ve been not really having any to speak of at 10mg.

Interestingly, I too had Lyme disease but that was when I was in 5th grade (I am in my early 30s now-got MAV suddenly when I was 27 in grad school). But I don’t test positively for Lyme anymore…supposedly!

If you do end up taking nortriptyline, it’s sedating after you are on it more than a week, but may make you more anxious/dizzy the first week as you get used to it. Everyone is different though so I don’t want to say what you’ll experience - my doctor recommends taking it 12-14 hrs before I want to wake up. It has also helped with the neck tension and other muscle pain that accompanies MAV.

Hope you feel better soon - there are definitely medicines that help! (Valproic acid/depakote also has been used with success I think along with other anti-epileptics - and Zoloft and amitriptyline are also apparently helpful). Best, Liv

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P.S. Hi Eric, I just started gabapentin because nortriptyline was causing my resting heart beat to go way up and my blood pressure also to be abnormally high. I guess this is one of those rare cardiac side effects (!), which is super lame because nort was working for me. Hope you find a drug that works for you…as I’m finding, it’s a lot of trial and error.

Hey Eric,

I know you posted this a long time ago - just wanted to know if you are feeling better as you are describing exactly the symptoms I am experiencing.

Best Johannes

Hello Johannes,

I don’t have the vertigo problems anymore, well a little bit sometimes when I am sleep deprived and tired. So eventually the vertigo seems to go away for me. Took about 6 months. I am not sure it is really ‘gone away’ so much that my brain has adapted to whatever it is. Wrong nerve impulses or whatever it is. That could be why I still get some problems when really tired.

I have the constant and heavy fatigue though and a bunch of other problems, some from being on the sofa so much no doubt.

I am pretty sure there’s a problem with nerves in my neck due to the disc prolapse. I might also have had more nerve damage at the brachialias nerves. Not sure it is related.

I think I will get an operation in my neck next month.

I’m sorry no other help. The vertigo is not a problem for me anymore, but my fatigue is debilitating, I hope it is not cancer.

Hey Eric,

Thanks for your quick reply. I am sorry you are still not better but at least the vertigo (or more dizziness) is gone. Its for me by far the most debilitating factor although I am also tired and not very active. Don’t beat yourself up re cancer… the doctors would have spotted this I am sure. Its interesting that you have been diagnosed with lyme disease as I too have positive markers + coinfections but I still believe I have MAV caused by my neck problems. Anyways - keep me posted and I am sure you will get better at some point. Best Johannes

Hi @mr.molar1982 - migraines often can begin in the neck (even vestibular ones!) so it’s worth visiting a neurologist. Vestibular migraines manifest in a panoply of ways so don’t let it frighten you.

@eric - one of my dear friends had Lyme and her symptoms are still so similar to mine. For lack of better words, you could be dealing with a Lyme hangover. Have you seen a Lyme specialist?