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New here - diagnosed with MAV


#1

Hi everyone,

I’m fairly new here, I have been lurking a little bit these past few weeks… I’m newly diagnosed with MAV after what has been 5 months of fairly debilitating symptoms (not as severe as some folks here, but enough where I can’t DO anything). Figured I’d share my journey so far…

For me, it feels like this has been brewing in some form for a few years now… prior to 5 months ago, my symptoms were always mild… just a vague wooziness and motion sensitivity that came and went, along with persistent “tension” headaches that were getting worse over time.

Earlier last year I had a few mild attacks which I thought were caused by colds or virus… dizziness and increased motion sensitivity. Since it was getting slowly worse with time, I eventually went to my doctor for it. After a few false starts (had low B12, which was causing a variety of nagging symptoms but not the wooziness it seems), I went to an ENT. They were only emphatic that it wasn’t vertigo because I wasn’t describing BPPV-style dizziness really, just “wooziness”.

Last August I went in for VNG testing to get more info, which for some reason set off a fire storm. I’m not sure if it was the aggravation of the testing itself, the stress / anxiety / aggravation of getting there (trains, city, subways, busy visual stuff I’m not used to), but a day after the test I had a really bad attack… I woke up at 2am motion sick because it felt like I was doing somersaults in my bed. For the next week I was completely laid out… I could only sit in a recliner because laying flat induced nauseating shoving sensations and dizziness. Any kind of moving around was torture from the motion sensitivity and caused severe tension headache, I felt like I was rocking, had mild ear pressure, roaring tinnitus, etc. The intensity of things settled in the coming weeks but stayed much worse than before, to the point where moving too much or going out still induced motion sickness. Weirdly, some things like driving were less aggravating than things like walking / looking around. Usually walking from my car to the doc office was far worse than actually driving there.

In the months since that first major attack, I’ve been stuck in a cycle of moderate symptoms… I’m often very motion sensitive, moving around too much brings on an instant tension headache and strong wooziness. I get attacks of much stronger symptoms every 1-2 weeks that leave me in bed for several days from dizziness and motion sickness. I can always detect visual disturbances like everything is shifting around slightly in my vision… much worse when fixating on far away things (as a result I can’t tolerate my prescription glasses for distance vision).

Testing-wise, I’ve had the typical things: VNG test was normal, neurological tests were normal, head MRI was normal. Many many repeated tests and physical therapy for BPPV lateral and horizontal canals were all normal. Rotary chair test was normal. Everything is saying my vestibular system is fine. My doctors think my tension headaches / wooziness / attacks are all migraine-related.

At the moment my symptoms are still strong enough that I can’t work… I have periods where I am not so bad, and periods where I’m much worse but generally I can’t do much of anything because busy environments aggravate everything beyond what I can tolerate. Going to a grocery store is my “benchmark” test and I rarely leave without a headache and woozy feeling. Certain other visual stimulus also bother me, like busy carpets, bright fluorescent lights, open environments, noise etc. Initially I could not even look at computer screens (I work in software), but that’s improved quite a bit if I don’t scroll too much.

Only fairly recently have I come to understand the wider breadth of scope that encompasses MAV. I know it’s a “diagnosis of exclusion”, and I was fairly dismissive of it at first because I don’t get classic migraines and my symptoms are constant in some form or another. I just recently read “Heal Your Headache” on the recommendation of my doctor, and while I’m skeptical of some of it, by and large it was pretty relatable for my symptoms and provided some explanations that made sense of how migraine could be causing them. For me the proof is in the pudding though, so I’m planning to try the migraine diet the book recommends and continue with beta blockers to try to get my symptoms down to a level where I can be a functioning human being again (in some form).

My main points of skepticism right now are still that my symptoms are so constant and persistent (I know it can happen with migraine but still), and why I had such a strong fallout from the testing, since it seemed to start with irritation in my ears… specifically from the caloric testing using water, my ears were popping and felt very irritated after that.

In any case, I’m still trying to figure all this out and find what makes me better… this forum is one of the ONLY places I’ve found where others have had the weird array of symptoms I’ve had, so I’m glad to have found it.

Thanks for reading!


Symptoms
#2

I know one other person where the caloric test in VNG left them far worse than they started off with. One of my doctors told me this can trigger migraines as the test forces one of the ears to do something that the other does not and confuses the brain into a migraine state.


#3

Interesting… I’m glad I’m not the only one then. For me it was definitely a pretty ‘violent’ test, worse than anything else they did for sure.


#4

My symptoms are similar, diagnosed with MAV in June 2016 and PPPD in early November by a highly rated neurologist at NYU/Langone in NYC. Have you been under extreme stress and anxiety that may have contributed to you coming down with dizziness? My medication journey has included Gabapentin, Amitriptyline, and right now Effexor daily and Valium to take as needed for anxiety. Effexor helps both MAV and PPPD and seems to be the drug of choice currently. All of my tests including MRI were normal, but in the doctors office was told to march in place one hundred steps with my eyes closed, when opening them I was facing ninety degrees to my right. Things get better. I’m currently not working and get outdoors every day since the natural light is better and moving helps. I did four months of VRT last summer and my PT saw improvement.


#5

Hi Ron,

Anxiety & stress are definitely both factors for me… my symptoms elevate when I’m really anxious and ease after… but I don’t HAVE to be acutely anxious or stressed to have symptoms necessarily (or attacks). Hard to say what role it plays in causing symptoms, but it definitely worsens the ones I have… anxiety has been ticking up for me the past few years along with my symptoms though and the first half of 2017 was highly stressful.

I do have some history with SSRI / SNRI type drugs but largely it’s not a good one. I had a panic attack after a single dose of Effexor a few years ago and I now stay far away from it. I’ve only been taking beta blockers to date, which seem to help only a little so far. I’ve not had any attacks though, which is something.

PPPD has some interesting parallels, I’m not super familiar with it but it sounds like I should look at it more closely. I’ve had 1 family member tell me they had weird balance issues for a couple years that an SSRI helped resolve but they didn’t call it PPPD.

Is your PPPD diagnosis in addition to MAV or in place of it, out of curiosity? Perhaps it doesn’t matter all that much given the semi-arbitrary nature of these diagnoses anyway.


#6

Hi Matt,

I was working a very stressful and demanding job with rough commute when I woke up one morning totally drunk. I had a bout of BPPV maybe five years before with vertigo but could tell right away this was different. Went to my doctor who had prescribed the Epley Maneuver for BPPV and he prescribed Meclizine which did not help at all. First neurologist diagnosed Vestibular Migraines and Gabapentin helped me for a good nine months. So assumed that is what it was until the third neuro diagnosed PPPD which was told has a psychological component. Besides medication, I am being sent for a vestibular psych evaluation later this month to find out if I’m a candidate for cognitive behavioral therapy. I believe the MAV caused PPPD, which is more continual symptoms rather than episodes.

Have you tried Valium? I know what you mean about attacks where you are almost paralyzed with dizziness, nausea, fatigue, and vision problems. Most days my symptoms are mild but maybe once per week have an attack which can be moderate or almost severe. Two weeks ago one attack was so bad I could barely walk home.

Another curious thing, when I am away from home (NYC) for a period of time my symptoms nearly disappear. My doctor assumes this is because I’m somewhere more relaxed and quiet. Usually when I return home from one of these trips I’m good for three days then the symptoms set in again.


#7

I can totally relate to the car thing, Matt. When I ride in my wife’s car, the symptoms STOP. It’s the only time that I actually feel normal. I can drive as well, but am always a bit concerned I’ll get a good spin on the road, so I don’t do it. But when I get out of her car to go to the doctor, the ground shifts underfoot.

I was a data center engineer, so lots of screen staring, but I left my job because I couldn’t do it anymore. Let us know how _Heal Your Headache_works for you.

You’re not alone!


#8

@Ron_Denning Interesting regarding the PPPD, I could see that being a factor. I think I had read it’s a fairly fast onset with that, and my symptoms came on slowly until they hit the “tipping point”, but it would make a lot more sense with PPPD coming on from MAV… I’ll be reading up on that more for sure.

I’ve never tried valium but I have tried ativan in the past, I don’t like to take them unless absolutely necessary.

I think going away would be worse for me at this point, there’s a trap with this kind of problem where I don’t want to be “caught out” if an attack sets in, I’m sure it’s one of those things I shouldn’t be worrying about but do.


#9

Thanks @draebcir

The only thing about being in a car that gets me is if it’s early and there’s lots of shadows across the road from the low sun, the flashing sunlight can be miserable… or being stuck in traffic where cars are moving at different speeds around you. But on more than 1 occasion I’ve lowered my motion sickness by driving. I think my brain expects the world to be unsteady while driving, so the internal unsteadiness is “normal” to me there.


#10

I think for me something else could be going on. Two ears get the same info when driving. When walking there’s push-pull signalling going on between them which might show up a peripheral issue … Like I’ve said before, aside from having had an ear pressure issue when in the car, when driving I feel almost normal.


#11

Hi Matt,

The last neurologist who diagnosed me with PPPD told me to check out this link https://vestibular.org/pppd

Everyone seems to be slightly different with triggers and response to medications. I was only given Valium to take as needed and not overdue it. One neurologist recommended mindfulness meditation as a way to help cope with this condition. I do internalize stress and need to work on my emotional health. Good luck!


#12

Matt, I am exactly the same. Fluttering shadows from an overhead tree canopy or cars moving at varying speeds make me wonky.
Excuse the fervent description, I’m an author. It’s what we do.


#13

I just found you on Amazon. Sci-fi and thrillers. Wow!


#14

@draebcir This is a classic sign of your eyes compensating for an ear trouble. Visual cues throw you off. There are VRT exercises which can help fix this.


#15

11 posts were split to a new topic: Hi, I’m new to this site


#16

@matt99 not heard from you in a while, how are you getting on?


#17

@draebcir yep, and medication can really help too, check out Amitriptyline if VRT and diet doesn’t fully resolve this.


#18

Mine is a vestibular issue, not an ear thing. We went through all the ear stuff for months and Amitriptyline didn’t do anything for me. The low-dose clonazepam helps keep the major rocking at bay, but my ear doctor is referring me back to a neurologist to see where we go from here.

Thanks for your response!