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MAV for 7 years, relapse after COVID

I am new to the site, and have never posted on anything like this before. I’m at a low point for sure. I have suffered from vestibular migraine for 7 years. I was treated with Nortriptyline for several years, and was able to get some of my life back. I have never experienced vertigo, but have had daily light-headedness, head pressure, and tingling/pulsating in back of head when it is bad. Last year I had a relapse after traveling abroad, but when Nortriptyline didn’t help, Verapamil improved my symptoms somewhat. Then about 2 months ago I got COVID, and since that time it has been awful again. I was just put on Topamax in addition to the Verapamil, and my nerves are at an all time high.

I don’t know if anyone has had any similar experiences, but any thoughts or words of advice under these circumstances would be much appreciated.

Jason

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Hi Jason, yes I’m coming up on 4 years and seem to be mostly recovered finally. Do you have head pressure or headaches with the dizziness? Or is it all dizziness?

I think with this illness you really gotta throw the kitchen sink, which it sounds like you have with the meds. Topomax and Verapamil are both good ones for migraine-related conditions (I’ve been on both). I would continue with those if they are working OK for you and then also consider:

  1. CGRP (I’m on Emgality). It may be hard to get insurance coverage, but you’ve been on enough meds that you might qualify depending on where you live.
  2. Cefaly device (I still use it once per day).
  3. Migraine diet (and eliminate caffeine). Maybe you’ve already tried this, but it’s still worth doing I think.
  4. If you have head pressure / headaches, try to treat the “bad” ones with Sumatriptan or some other abortive medication.

As for the nerves, we all understand that here. I think the anxiety was the worst part of this condition for me, it was unreal. I’ve been to several different Psychologists and Psychiatrists just to “get by” with daily responsibilities. Did you find that Nortriptyline helped with the anxiety component? I found that Topamax sort of addressed the anxiety, but Amitryptyline (and now Propanolol) seems to help me more.

Anyways, hang in there and keep going. Things will get better again!

Erik

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Hello Jason. Bad luck for the re-emergence and welcome to The Gang. What you gotta remember is we have a predisposition to MAV so it will recur after trauma/stress etc. Taking antibiotics or even a bit of dental treatment can bring it on again. One poster found that after eight years. IMO it is always there just lurking underneath the radar so to speak. Re-emergence happens to people all the time. Using this site’s Search facility you will find multiple references to such. Check out a very recent thread ‘Relapse after illness’ as example. About all you can do is tighten your Fight It regime and hang in there and hope. You got it under control once before so it can and should happen again.

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Erik, thanks for your reply, and great to hear that you are doing fairly well. I do have some head pressure with the dizziness, with feeling a pulsating in the back of my head, but true headaches are very rare. I actually just started the Topamax yesterday, and had a hell of a day/night. Not sure I’m the right guy for this one. I’m not sure the Nortriptyline directly helped the anxiety piece. I think it was more time than anything, but who knows.

Helen, I appreciate your reply. I will certainly use the site as a resource. Best wishes.

I suspect you took 25mg as an initial dose? Sounds like you need to ‘use the resources’ right now to get to grips with how to start off and increase low n slow. It’s a good drug for vestibular migraine but many find it a nightmare to take!

Yes, my neurotologist actually prescribed me 25 mg twice a day to start. I just couldn’t do it. Searching the site for stories on starting Topamax…it wasn’t pleasant. Sounds like I need to start at 12.5 mg if I’m going to give this a go. Hopefully my neurotologist will understand.

You are the person taking the medication. It’s for your benefit not his. Don’t ask him, if you have to tell him at some point in the not too defined future. Neither neuro I saw had any idea of MAV hypersensitivity to medication. Not a clue. And the vast majority of them don’t become at all involved in case management post diagnosis. They expect doctors to do that but unfortunately they are not very often aware either so for many it’s left up to the individual to research and implement a regime that gives them success. Btw many people end up counting beads out of capsules to get lower still with some drugs like Effexor. It’s very much a question of doing whatever it takes to obtain relief.

Hi Jason. Exactly the same for me. My Mav started 7 years ago and I was doing so well on Nortriptyline then got corona in March and can’t seem to get it properly under control again. My doc has added in Candesartan(blood pressure med) but I’m not convinced it will work for me. I can’t go up any higher on Nortriptyline than 40mgs as it affects my heart.

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I was doing so good for a while and then I got colitis and boom! I’m dizzy 24/7. Plus I was on antibiotics. I made a post about it. Yesterday my symptoms felt a little better. Still there but better. But today It’s back.

I’m increasing my medication up and it’s nearing week 3 but I’m still feeling it. I’m not giving up hope though

hi, just to add that I have been readings some long term effects of covid that sound much like MAV (headaches, dizziness, fogginess). The lost of taste and smell characteristic of covid point to neurological affectation of the brain after covid. So I think it might also need time for your brain to recalibrate. Some people are getting their taste smell back after a few months.
I hope you feel better soon!

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Vikki, I’m sorry to hear you also went through COVID and relapse. The double whammy. I hope that you get sorted out as well.

Francesca, it is crazy how the body works. When I had my first relapse, it unfortunately took a few months to get back on track. Hoping it is quicker for you.

Dizzy, thanks for the info and well-wishes!

What gave you your first relapse? Did you get back to baseline eventually?

I’m not entirely sure what gave me my first relapse. I had just gotten back from a trip abroad with the family, where my sleep habits were really off. I can’t say with any degree of certainty. I got pretty much back to baseline for having this condition (estimating 75% improved) before this relapse hit.

How did you get back? I’m going through a rough relapse right now :disappointed:

I am going through my 3rd relapse right now. Mine seems to come around every 10 years and hangs around for a year or two. In between however I have been 95 to 100%. Hoping to achieve recovery this time as well. All 3 relapses followed overseas travel, major stress, moving house, health crisis etc., and each time the first symptom has been insomnia, followed by dizziness, vertigo, nausea, and related anxiety. My first relapse also included post partum blues.

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How do you get back to baseline?

Verapamil helped a lot. And time.