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Thanks for your reply.
I’m still unemployed and going to do the unemployment route and go for medical insurance. I guess my concern is seeking out Dr Rauch then getting bounced off to a neurologist in Mass when I was just doing the same thing at Yale. I’ve heard great things via post about Dr Rauch, just hoping he’ll be the one treating me the entire time.
Does that make sense?

I also am looking toward the non medical vs medical as well.
The B2 has helped (for my ear pain), but I know there’s more supplements to be recommended, however, I did notice the magnesium had caused reaction 45 mins or so after taking. I’ve read some other people were sensitive to magnesium supplements too and get it naturally through food now.
I’d also like to discuss medicine as well if there’s nothing more I can try for supplements when it comes to that road.

Only reason I left Yale even though the neurologist was good with the 1st time I met him (he noticed left side weakness even tho the audiologist said it was fine). He told me this is forever and from what I can see with a lot of people there is an end road of success. That makes me doubt that he can help if he’s already killing any doubt of hope for an end road. That may seem like a quick decision of me to make with that situation but it sounds like he hasn’t dealt with many MAV people if he’s saying forever. Hearing forever just put a bad taste in my mouth. That’s my conclusion and I’d rather be in hands that have dealt with many individuals who had/have MAV and know there’s an eventual out.


Oh man, that’s strange. Well it’s saying there’s a new drug for us, specifically targeting the gene said to be causing our migraines. You can research on your own- it’s called the CGRP receptor and the drug is called TEV-48125 or Fremanezumab I think haha. They are passing an FDA suit this year and should hit the doctor’s offices as soon as next year! Patients reported an 80% increase in complete headache free days with no fog or anything. It sounds like bliss!

But anyway that is good you’re feeling positive. I’ve had some bad relapses myself. Trying to figure out how to get rid of the brain fog is the worst. I’m almost giving up with it at this point. I hate feeling like I’m extremely stoned or just out to lunch all the time :joy:


Sorry to jump into your convo but have you ever had brain fog? I’m trying to figure out the best ways to get rid of it. It seems now it’s made a home and everything I do works for maybe a day and it comes back? What are you taking for preventive measures


It’s definitely not forever. I asked Dr Priesol if I’d be stuck this way when I first met him and he reassured me that 99% of people make a full recovery. That being said, he did temper expectations a bit by telling me recovery can sometimes take a long time, and may be a lifelong issue that comes and goes (less frequently over time) - I do agree with you though as hearing “forever” from a doctor would leave a bad taste in my mouth as well.

What I can tell you is at MGH you definitely won’t be passed off to another doctor. They may refer you to a neurologist to rule out other more insidious things, but they’re very detailed and thorough in their care and won’t leave you hanging


Brain fog for me is by far the most frustrating thing about MAV. I hate it even more than the dizziness itself. It’s such a hard feeling to describe to people, like your eyes feel all cottony and your brain is just hazy and struggles to remember things or formulate thoughts

I find the only thing that really helps the brain fog for me personally is Advil Migraine. Not regular old Advil or ibuprofen, but the Advil Migraine that comes in a red box. Otherwise not much has touched the brain fog which has been a struggle for me


Same here. I ask so many people on here that same question and everyone’s response is the same as you and I. I sometimes would rather have dizziness every single day than the fog. It’s horrible, like Alzheimer’s or dementia. It’s so frustrating but I hope we can one day find a fix. Good luck to you, and I hope you’ve had a wonderful weekend :slight_smile:


Thanks for the responses.

I had a question-- yesterday morning I noticed my inner ear fullness in the left ear was back… by the end of the day it felt very full which scared me. I tried doing the valsalva maneuver (spelling?) about 8x yesterday morning thinking it’d clear my ears up in the morning and it didnt. I know my allergies have been kicking up lately. I’m not sure if it’s a little better this morning or not but I do notice there’s still a good amount of inner ear fullness in my left ear. I did notice yesterday I was getting a lot of ear pain in both ears and then the fluid like sensation leaving my ear in my left.

Has anyone had greater than usual inner ear fullness increase then go back down or what does this mean? I miss my full hearing I had a couple days ago and I had inner ear fullness slightly in the beginning of this about 4-5 months ago now.


Sounds like a Hydrops fluctuation. Suggest you focus on the dietary guidelines of restricting the 6Cs, drink plenty of water and see if that helps. I would not do Valsalva. Leave your ears to work it out on their own.

Mine doesn’t fluctuate so much but I still get ‘attacks’ of swooshy tinnitus occasionally which is clearly a Hydrops thing.

Don’t panic and be patient. I’m sure it will return to normal.


That explains that then. Will do. I thought the Valsava manuever might have irritated it a bit. Going to start meal prepping a lot to cut out the sodium and such. Thank you!! Your advice is always very helpful.
Today it feels like it started to reduce the inner ear fullness mid day but not fully and on my way to my brother’s tonight in higher elevation my right ear decided to do some inner ear fullness now. I can’t win.

I hope all has been well for you. I know you stopped the ami. How are you feeling as of lately? Still vertigo in the evening?


Had a bad relapse for a couple or days. Just imbalance, no dizziness. Now back to ‘normal’ thank you. :). Still without meds.

Ears simply aren’t perfect it seems, are very sensitive and can get upset for a while. Won’t last forever. Hang in there!


Would you say your daytime normal is a new normal ? How does it compare to the days before you pointed a shower in your ear ?

I hear lots of people talking about a new baseline, hence the question.


Yes. New baseline. Some days now are close to 100% of old with the odd mild ‘brain wobble’ (usually in an area bathed on both natural and artificial light). But walking through malls or supermarkets is almost never a trial like it once was when the condition was at its worst which is great.

Dizziness, light headedness and mushy floor is completely gone, but imbalance depends on the day but regularly improves by afternoon. Suspect lower head pressure when standing stems any leak and fluids eventually become more balanced.

Using a computer is comfortable for me most of the time now and to me this is a big indicator of health. At times especially mornings I get a feeling of eye ‘strain’ on my bad side but I can usually continue no issues. This used to only be possible when on meds.

If I have vertigo the night before, especially one of the more ‘spirited’ ones I’m likely to have more imbalance and discomfort the next day.


Sorry for the delay in responding. I’ve been reading the responses on this site late at night, but have been reading on my phone so haven’t responded from there. Taking the time to respond now from my computer.

I’m glad you’re off the meds and managing well. Sorry that a relapse occurred though. Usually when I have a relapse it takes me a couple days as well. I noticed when I had my really bad one in early August it took 5-7 days for me to be somewhat normal again.
What have you done with your time differently now since you’re starting to get into a better place?

Funny enough, I actually thought of you this morning when I woke up, because I had about 10%-20% of the inner ear fullness feeling in left ear and when I sat up for about 5 mins (finally got up/woke up), I felt the fluid in my left ear leaking out feeling and I remember you stating that happened most/every morning for you.

I’m still dealing with the random inner ear fullness feeling though sometimes throughout the day (I’m sure seasonal allergies also are not helping the situation) and then feeling the fluid feeling (right now as I post this the fluid feeling is occurring). I haven’t done the Valsalva maneuver ever since that other post I made. I have noticed most nights now I’m walking imbalanced in the dark. Not sure why that is, since I was fine a couple weeks ago.
I also noticed my head isn’t as warm/hot as it has been in the previous months, but I can tell when I start to get more symptomatic that my forehead gets much warmer.

I’ve been abiding by the migraine diet for about roughly 2 months now and I can sense more so about 15-30 mins later after eating something if it will trigger some symptoms (light headedness, motion sensitivity, possible slight dizziness, etc).

Thank you for that info from Dr Priesol about 99% of people make a full recovery, that gives me a bit more hope since I, and others, are always looking for answers and “hope”. My appt is soon with Dr Rauch.

Thanks for that info on the migraine med and the information regarding it’s status! (I’ll pass that info along to my family since 2 of my brothers get migraines daily. 1 brother it’s from a hard workout or work. The other brother it’s from barometer pressure/weather and work. I usually ask him how he’s feeling if I’m feeling off to gauge if it truly is the weather or just the random VM fun). I always like referencing back at this thread and seeing information that’s been discussed (and posting my continuing progress).


That’s alright :slight_smile:

Well this is the million dollar question. I’ve tried so many things its hard to identify anything what particularly helped. But clearly I’d like to keep on doing 'em and hoping that there is going to be a continuation of the trend.

I believe the main thing that is happening is … healing! (although I had a diagnosis of MAV, I’ve also had a diagnosis of PLF and what I’m going through is Secondary Hydrops). I think the inner ear is healing itself. I know this is the case because those sensations you describe I’ve had at less and less intensity over the months and the ones during the day don’t happen anymore. I think this is because the damn has healed enough. Unfortunately at night the head pressure is higher (CSF) and this pushes against the ear and the membranes and that isn’t quite strong enough. Yet!

What have I done to promote healing?

  • double pillow and try to keep head as high as possible in bed
  • as little bending down as possible
  • stopped using earphones for the time-being
  • minimise coughing

I’ve considered sleeping in a chair but haven’t tried that yet.

On the relapses and the ‘hang over’ I think this is what happens when you have a big leak from the ear. The bigger the leak the longer it takes for you to get back to normal as essentially the ear needs to refill the missing fluid.

I don’t want to alarm anyone by being so frank about the anatomy. I think actually the dramatic symptoms we experience are huge amplifications of some very small things going on. Most of it is probably benign and doesn’t cause any long-term damage - even the drops in hearing … I suspect for many hearing will eventually return to completely normal. It’s just that because the ear and the brain are so sensitive that these small issues cause major symptoms and this can escalate to a migraine (not to mention all the anxiety etc. etc.)

I think the diet is REALLY useful except that until the condition stabilises more, it won’t seem like its doing much, but when the inner ear is nearly healed, the diet helps to keep the pressure down and stop it breaking open again.

Yes I get symptoms escalate after eating sometimes, especially tinnitus. I think this is a hint that perhaps you should have chosen something else to eat. My personal theory is you need to reduce Potassium. That means cut out Dairy, Caffeine, Chocolate etc. This explains the MAV diet perfectly.


I know this is probably stupid of me to not have tried it but how has the migraine diet been helping for all of you? It’s hard for me to cut caffeine. When I did cut it off completely a few months back I was so fatigued all the time and took so many naps!

Besides that, has it actually helped improve? Or a 50/50? Just curious if I should throw myself into it or not. I keep having relapses and am wondering what my next move should be. Thanks all, and have a wonderful week :sunflower:


Kelsey, it’s definitely worth a try … i’ve not used it properly throughout my condition - i was quite dismissive of it - then recently the penny dropped on why it might be effective so I dropped milk (replacing with almond milk), dropped almost all chocolate and dropped caffeine. Within 2 days I felt slightly better. I doubt it will stop the big swings in symptoms, and improvements will be hard to detect during bad months, but it may make your better days even better I suspect. And if we’re lucky there may be a long term positive effect …


Haha thank you for all that info. This morning I did not get the fluid feeling and I don’t hear a woosh noise at all. Just the fluid sensation feeling leaving my ear.

I also meant have you gone on any holidays/vacations/trips since feeling a bit better with progress?! Haha :slight_smile:

I’d suggest doing it. I was feeling much worse previous to the diet. I still get breakthroughs and random VM symptoms, but it’s not like the issues before the diet (even though I’ve been dealing with this for 4 months and the symptoms morph).

The vitamin B2 and diet have helped me a bit but I still want more resolution. Especially since environmental like inclement weather makes my brain feel like it’s in a vice and I feel motion sensitive/dizziness. Imagine Mr Macky from South Park had his tie untied with his head floating away, which is how I describe the feeling now.
I do notice when I eat something I shouldn’t that it’ll cause symptoms as noticed. Just think of it as one less variable to cause issues in your every day life.
Try it and let me know your results!


no, actually, doing my flat up at the moment and staying in a local airbnb, so a bit of a staycation, but kind of like a holiday :slight_smile: only 5 minutes from my flat though … lol … very cheap airfare of ZERO lol


Home away from home! Haha. How are you feeling today?


Fairly good, thank you, coping ok … looking forward to the day I don’t wake up with some wobbles and a feeling of fluid drip drip in the ear… seems its taking ages to disappear completely! But daytimes are usually pretty good at the moment!

Glad your symptoms were less today :slight_smile: