The Vestibular Migraine Community

I'm a newbie here. Are these MAV symptoms? And my brief story


Hi, I never heard of MAV until about a month ago. Sorry this is kind of long, but I think it helps to get some context. I really appreciate any input you have, I’m a real newbie with MAV and I’m trying to understand if I may have it and what I can do about it.

Nov 2016 - took 1mg of methylene blue for nootropic purposes. Started to feel panicky a couple hours later. Heart rate shot up to 120 (my resting is like 55). Several bowel movements (no diarrea). Super hot and sweaty. Got no sleep. Next day felt like I had the flu or something. Within a few days started to notice weird head sensations, like swimmy/pulsy stuff, super lightheaded all the time. Every time I ate something the symptoms started again (super panicky and weird head sensations). This went on for about 6 weeks. Night sweats, severe anxiety, panics, went to ER, called an ambulance, etc… Watching TV was not possible for the next 5 months or so as it was way to stimulating. Lost a lot of weight (already skinny) because I had to eat like a rabbit nibbling things here and there. I found that simple bland meals like rice and meat and veggies eventually were okay.
Jan 2016 - Noticed I started to get dizzy periodically, started happening mostly when I was laying down, as I had lots of down time exhausted mentally. Never had real vertigo, nothing ever spins. I just feel uncoordinated with movements and balance is off. Makes me feel like something bad is going to happen, but nothing bad really does. Or, like I’m in one of those bouncy houses all the time.
Feb 2017 - Couldn’t function anymore due to anxiety. Decided to go on SSRI Paxil (as it once helped me before in college days). Anxiety shot through the roof with Paxil, had icy-hot sensation, depersonalization, couldn’t read books to my 1 year old without freaking out looking at the characters.
But it is normal to have increased anxiety on SSRIs for the first few weeks, so I kept going, 3 weeks turned into 6 weeks and by then I was a “little” better with anxiety and did NOT want to try to ramp down on this med after all the hard work I put in. But the dizziness seemed stronger and more constant now. I still felt awful and mildly depressed.
June 2017 - Need to get rid of dizziness, its the number one problem. I hate Paxil side-effects and doctors bucket me as “mr. anxiety”. Started tapering off the medication linearly.
Sept 2017 - After an awful 3 months of torture I was off the med. Brain zaps, panic attacks, etc, been through it all, but I felt it had to be done to remove the “mr. anxiety” stigma. I am now completely drug free. I can hardly believe I went through that.

NOW - And finally coming to now. I am taking 6 weeks off of work to decompress and analyze my situation. I’ve been to the ENT multiple times, this is what we did:

  1. Caloric test - wasn’t able to make it through the test, I threw up. I’ve always been motion sick easily.
  2. VNG - normal
  3. MRI - normal
  4. Spinning Chair test? normal
    They saw nystagamus-like stuff in the VNG but nothing conclusive, I don’t really understand all the tests they did I am working to make sense of them. But basically, the ENT says the cause is “unknown” and I should just do some vestibular rehab - which I am doing, actually the vestibular rehab does help and I continue that. I saw a Neurologist and after some reflex testing he said I was normal and probably the Paxil was just causing dizziness and it may take some time to subside.

My dizziness is getting less (SLOWLY over weeks/months), its really hard to measure, but there are definitely 2-3 hour periods sometimes now where I can barely tell my balance is off. I’ve started a low-tyramine and low-histamine diet, too early to tell if it helps much, but I feel less head pressure and better mood/cognitive function. Exercise is too scary for me, I feel like it starts amping me up again with anxiety. Same with salty/fatty/starchy foods - basically any food that makes me toasty warm and comfortable (sad face). Meditation helps, sometimes Tai Chi is okay but feels weird, I do basic stretching and range of motion. Sleep is not great, I sleep for a few hours and then toss and turn for the rest.

Overall, it was a rough year, but I’m hoping to get closer to root cause now and find some real help. The toughest thing I that I just thought it was all my anxiety, and so did everyone else. But I don’t believe that anymore. I haven’t really ever had much of an anxiety problem. So, it just doesn’t make sense to me. Yeah when my son was born - that was rough, but that was like a 1 on the scale compared to what I’ve been through. Anyways I’ll end it there, thanks for any input you can provide.

Does it sound like MAV? Or just severe neurotransmitter imbalance (which is another thing doctors say)?