Looking for answers

Hello everyone,

Here is my story. I am still looking for answers after 21 years.

I used to have motion sickness as a child. Other than that, very healthy childhood.

At age 25, after a certain stressful event, I had an attack of vertigo which resolved on its own.
After I gave birth to my twins at 35 years of age, within a month I noticed vertigo symptoms. I attributed it to tiredness and lack of sleep.

Afterwards, when the kids were 4, I started having vertigo regularly. Was more severe near my periods. But then had lot of triggers. Stress, lack of sleep, spicy foods etc. I was diagnosed with GERD also during that time and was put on Protonix for 6 months. Miraculously, my vertigo almost disappeared while on Protonix.
After that, for many years, I had severe bouts of vertigo of and on. MRI, CT scan, all tests were completely normal. Audiology tests normal. Only spinning sensation- never headaches, nausea or vomiting.
Was put on Meclizine which was a lifesaver. But had to take it continuously for 2-3 years and then multiple times weekly.
8 years ago, I contacted my local University hospital. Two doctors did lot of ear tests and told me this was not an ear problem. They told me it was MAV- migraine associated vertigo and sent me to a neurologist. She started me on Propranolol. I was already on Toprol XL for hypertension and tachycardia. She changed it to Propranolol and my brain fog disappeared in 2 days. Vertigo was unresolved and it only responded to Meclizine. After some period, the vertigo is still there but little better.

I flew internationally and came back a week ago. I flew after 11 years and after landing, vertigo hit again. Now I have ear pain, ear clogging and vertigo. I know mine is not Menieres(?) as in these 21 years, my hearing tests have been perfect.
My symptoms usually are-
Vertigo
1.after lack of sleep
2. Eating spicy food
3. Stress
4. Reaching to get something on top shelf ( Weird, right?)
My neurologist is sure this is MAV. But if I am correct, there is no specific test for MAV. My symptoms have never resolved completely in these 21 years.

Any advice, thoughts are greatly appreciated.

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Welcome.

Yep, this happened to me twice before things went chronic. Stress, for me, is definitely in the top two things that probably kicked MAV off.

Other people talk about it:

And I ran a poll:

No it was not always stress. Cloudy weather, spicy food are also my worst triggers. Once I ate a big spoonful of very spicy dish- just one spoon and at that instant my vertigo hit. It lasted for 2-3 days.
All these things scare me- thinking is MAV a misdiagnosis for me? Does this sound like MAV?

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There’s a difference between a diagnosis and an aetiology. They are not the same thing.

MAV is definitely not Menieres, but is it related somehow? Maybe? It is more continuous and less destructive, but there are very big similarities which are curious.

MAV is diagnosed by exclusion and by its set of symptoms.

We certainly can’t diagnose here.

I am sorry I wasn’t trying to get diagnosed here. Just curious if anyone has similar symptoms/experience?

I am desperately looking for answers though. I was so much better for last 2-3 years. During Christmas I went for this international travel- which included total 10 flights. The long haul flights didn’t do anything. But the domestic ones caused me all symptoms like congestion, ear pain and even vertigo :disappointed_relieved::disappointed_relieved:

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You will find many on this board with similar symptoms, unfortunately. I’m sure some will chime in. As far as answers go, now that’s really tough because I don’t think there are any definitive ones. Just keep the faith that it more often that not improves significantly! :heart:

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you should really start working with a neurologist to identify potential rescue and preventative medications. Try some out and see if they work. Get on migraine prophylaxis supplements like magnesium, riboflavin and COQ10.

You have to try and hit the ground running with things without getting too boxed into a corner thinking about the small probability that your neurologist is wrong. I struggled with this for a long time, and I believe it has significantly prolonged my suffering.

With this condition, speed and dedication to getting on the correct medications, and patience while you’re actively working on resolving the problem is paramount.

Even more importantly, you should never give up. Giving up never fixed anything for anyone who’s ever had this, and you definitely won’t be the first ;).

Don’t despair, and keep moving forward :slight_smile:

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I have what they are calling MAV. I take a very low dose of Nortriptylline nightly and that seems to help as prophylaxis. I have also used scopolamine patches with episodes of vertigo but that is very temporary (not good to use long term). My triggers are stress, rainy days (high pressure), red wine. What I have found that helps is taking sudafed as needed if I feel vertigo starting. It really helps stop the episode for me. Someone with Meniere’s told me about that and it has been a life saver.

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Wow. That’s really interesting. Thanks for sharing! (And welcome!)

@Madison19 Welcome!

It could be BPPV (not that we diagnose here). I have vestibular migraines, but I also have BPPV (positional vertigo). When you said you reached to get something off a top shelf that’s when I realized you could have it too. Is it really bad when you roll over in bed? Mine comes and goes and I am not sure what the triggers are other than I do know stress is one.

I am surprised the doctors told you it wasn’t an ear problem yet diagnosed you with MAV. Vertigo can be caused by lots of conditions, but a lot of times it can be caused by the crystals in the ear getting moved from where they are supposed to be. It sends mixed signals to the brain and throws everything all out of whack.

An ENT can put the crystals back (Epley Maneuver) where they go, and the vertigo will be gone IF it is BPPV. Even though I have BPPV, my vertigo is not always caused by it and instead is also a symptom of the vestibular migraines and I haven’t found anything that makes it go away except time.

I actually started having vertigo a couple of weeks ago. It is positional and mostly when I roll over in bed. I don’t have insurance and have filed for disability (not just for VM) so I can’t afford to go to the ENT to see if it’s BPPV or just regular vertigo, but if you have good insurance you might want to go to the ENT. The first time I had an episode of BPPV, I went to the ENT, and they put the crystals back in a matter of minutes and it was such a relief. The next time I went, it was not BPPV, and they couldn’t help me.

You also might google or go to youtube and look up Epley Maneuver. They have some exercises you can try to do at home that are supposed to put the crystals back but I haven’t been able to make that work for me but everyone is different so it may work for you.

Good luck and I hope this helps!

The ENT guys(multiple doctors) have done Epley manuever at clinic and I have done it at home too. It has never worked for the vertigo. One definate trigger is spicy food. So much so that yesterday also I ordered spicy takeout and two spoonfuls and as soon as it went in my stomach, my vertigo started instantly. Husband gave me a glass of very cold milk and meclizine and it stopped within 10 minutes. It’s bizarre. I have always thought it’s somehow related to the severe GERD I have had for last 35 years. Something to do with vagus nerve being irritated- may be? I really don’t know. If I eat super bland food, vertigo is much better. But then it also comes back if I am sleep deprived or stressed out a lot😥