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New to the Forum: Struggling with MAV/VN and Need Some Advise and Support

I was diagnosed VM back in 2018 due to sporadic vertigo (without headache). My neurologist recommended no medication but changing lifestyle and avoiding known triggers. It did work for sometime. In the first haft of 2019, I was myself and had no vertigo for 6 months. Then in July 2019, I went on a business trip to Asia for a week and after two weeks went Iceland for two weeks for vacation. Only had one attack in Asia due to lack of sleep caused by jet lag. And one mild attack in Iceland for eating too salty.
Then in September it all started again but this time it is so different. For two occasions, they were so intense that I bump onto the wall. I went to the neurologist and told him it was different from the VM attacks. But he did not listen and insisted I continue to maintain a healthy lifestyle. He said it should work as it worked before. In October, the third attack came with severe intensity. I felt like I was falling off a cliff and might passed out for a second. In trying to regain the control of the body, I hit heavily on the countertop in the kitchen. The fall broke my eyebrow and I ended up in ER with six stitches on forehead. I saw another neurologist and did CT, MRI, EGG, whatever you name it but it came back normal, except for the interception of a blood vessel with neuron in my right ear but the doctor said it also happens a lot among healthy people. He thought I had VN.
Ever since then, I first tried Verapamil (didn’t work, strong side effects), Keppra (strong side effects, have to stop taking), and now I am on Lamotrigine for two and half months. I still have 5 mild attacks a month, which will last a few minutes and with lingering dizziness for an hour or two.
In the latest follow-up, the doctor recommend continuing with Lamotrigine. But I felt I am not getting better with it. For the last couple of days, I caught a cold and had two attack in two consecutive days.
I would like to know whether someone has similar experience and seek your advice on what possible options that I can try as I feel my neurologist is somewhat guessing what’s going on and trying different meds to see what works.
Feel so devastated with this disease and felt life so miserable. Always telling myself I will come out this as a stronger person but sometimes doubt whether I can come out of it or not.

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hey! welcome and as we always say, sorry you are suffering from this. We can’t tell you if you have for sure MAV or not, etc, but your symptoms are similar to many on this forum. Please read the welcome wiki where there is a ton of info. Also, in case your neuro is not very familiar with protocols, I would print Hain’s diagram (i’ll link it in a little) to see what your options are. We respond so different to different meds and some get better after a while with the right combo of lifestyle and meds.
You will get better, it takes a while, so be patient, but you will definitively feel better.

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I’ve been trying to respond to you since yesterday but my Broadband keeps dropping out so hopefully this, my 4th attempt might just make it through so will be very brief.

Yes, devastating is a good word and it can seem overwhelming particularly at first. Eventually it will get better in many ways. Speak further to neuro. Lamotrigine is known to be good drug. You may need higher dosage and a couple more months before you can really be sure it’s going to help or not. It’s same with all drugs choices for MAV. When you say your neuro appears to be guessing and just trying various alternatives that is correct. That’s all they can do. Preventatives are just arrived at by trial and error. My neuro said that only last time I saw her. Unfortunately medicine is an art not a science and that particularly applies to MAV/VM dx. It is extremely commonplace to experience increased symptoms after a cold, or flu or dental treatment or hay fever or pretty much anything out of the ordinary. Many people actually start first attck of MAV post a cold. Helen

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here is the link to Dr. Hain’s (a very well regarded specialist in MAV and other vestibular disorders) flow diagram of therapeutic options for MAV. Note that not all the medications are there, these shows his favorites, as @Onandon03 says, its more an art (and clinical experience) than a science.

Good luck finding what works for you soon!

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Thank you both for your reply. Feel better when you can talk to someone who shares the experience and knows how you feel.

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Take a good look around this site. Search every symptom you have, every drug you’ve tried or are trialing or are thinking about trying, every emotion you’re experiencing. Look at the big med poll wiki. Read a few personal diaries You’ll find many voices talking about every aspect of MAV. You are not alone. We’re here. We understand.

Welcome.

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What you are describing sounds similar to what I have, Vestibular Paroxysmia. Here is an article that describes it:

That showed up on my MRI. I’ve learned what movements not to do to avoid it. I consider myself lucky that there is one thing I can control. I don’t think everyone with VP has as easy a time with it as I do.

Hey @flutters, if you don’t mind me asking, what movements trigger your VP? I was never able to figure out a pattern for my attacks.

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Mine’s on the right side. I have learned to come up from a crouch slowly and as close to straight forward facing as possible. A concurrent turn to the right makes me spin violently. In general I’m a lot slower and more deliberate with any right hand rotation. Traffic can be a problem. I’m better with using my mirrors and back up camera. MAV had to learn to adapt to that which took lots of meclizine and VRT.

Interesting. I haven’t heard of lamotrigine being used for VM. I’m sorry you’re going through this. I’ve been on 37.5 of venlafaxine and so far so good. I agree with looking at Dr. Hain’s site. Good luck!

I am not sure whether my symptoms fit VP, as VP could happen multiple times a day. While for me, I have never had more than once in a day. I think it could be VN.

I am currently on 200 mg/day of lamotrigine. It seems Dr. Hain recommend only 25-100. I did feel better when I took 50 mg and the conditions worsened with titration. I discussed with my nero but he said I should stick with 200. Maybe I can try to cut it to 100mg first to see whether it improves.

Why would you stay at a higher dose than what felt right for you? We have to constantly educate the experts.

I have VP (Vestibular Paroxysmia) and my attacks only occurred every 4-6 weeks. I’ve been on Keppra for about 21 months and have not had one attack since I started taking it.

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I agree with you. We live in our bodies and know our body better than the doc.

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In that case, it could be VP. Unfortunately, Keppra did not work for me. Just cannot tolerate it. I will do more research on VP.