The Migraine Associated Vertigo Community
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My journey to Hell ... and (almost) back.

Hey Les,

I try to use headphones as little as possible, but sometimes it’s unavoidable. Low volume is probably ok, especially if not thumping music (ie no thumping bass), imagine speech is fine.

As a musician I love live music but I’ve elminated that AND cinema - I watch movies at home.

If you want my explanation for this:

Because certainly in my case the underlying aetiology is Secondary Hydrops (after PLF) (which has been diagnosed by other doctors as ‘MAV’ - more than once!), I try to subject myself to loud noise as little as possible because this may inhibit healing.

I personally believe all MAV is Secondary Hydrops and a lot of it is caused by an initial trauma of some kind. The only way to calm it is imho to reduce the risk of and minimise further perilymph leak - its this leak which results in and sustains hydrops (ironically) as the body tries to replace the perilymph and overcorrects (I go into why I believe this to be so elsewhere). Vertigo imho is one sign of a (high pressure) leak, but in my case I get all kinds of bubbling, slight popping and crackling sensations which suggest a lesser leak (when I first had this I would get a glugging sound, suggesting how bad it was!)

That means reducing all physical risks. I believe this means minimising peaks in head CSF pressure as much as possible (CSF pressure interacts with inner ears most when they are hydropic) - ie keep reclining to minimum (don’t sleep too long, sleep with head up on a stack of pillows, DO NOT lie down during day), stand as much as possible, don’t strain (NO heavy lifting), don’t bend head below waist. I noticed that by following these guidelines I was initially able to eliminate the additional tinnitus and dizziness I was getting when bending down (on the odd occasions I allowed myself to). Then eventually the vertigo went. This gave me the confidence that this was the right approach. It’s taken a lot of time, but this has borne fruit. Note these are the same guidelines PLF patients get post patching (which is a flawed procedure imho due to the pressures involved which would guarantee the patch will fail in most cases), but I suspected they might work without the surgery, and I was right.

btw, I personally believe tinnitus is a clear sign you have enhanced pressure in your ear. This is known as Hydrops (but that does NOT mean you have Menieres!! Menieres patients usually have Hydrops but the causation is Menieres -> Hydrops I suspect, not the other way around necessarily). If your tinnitus increases if you clench your jaw like mine, I’d say it is likely that is the cause of your tinnitus. My doctor believes my tinnitus is down to the internal pressure. I don’t see why this wouldn’t likely be the case with others, especially those with ‘MAV’ that present exactly like SEH patients.

Note, this is partially my theory and your mileage may vary. I’m clearly not qualified to diagnose. It may not hurt to try this though, it’s ultra conservative!

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So all hasn’t gone completely smoothly.

I had a relapse which I’ve linked to moving some heavy boxes from storage to home. I remember feeling some significant vertigo a couple of times when putting down some heavy boxes.

In my case, I believe i’ve exacerbated my Hydrops. I ended up with a mild migraine and a return of more annoying imbalance and a clear increase in bubbling sensation in my ear in morning when I rise.

A little over one week on and I"m slowly improving, but I can tell i’m still worse than I was. I reckon I’ve lost maybe 6 months recovery progress? (on the pessimistic side). Oh well, won’t do that again in a hurry! On the positive side, maybe I’ll recover quicker? Stay tuned :slight_smile:

Well well … a few weeks and I’m almost back to full improvement again. No migraines & balance is almost 100% again, morning, noon and evening … back to just annoying tinnitus! Seems I’m getting better again! I’m still getting a little bit of fluid sensations & bubbling/popping in the bad ear but can’t complain with this trajectory! :slight_smile:

I will be staying away from any heavy manual work for a while.

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@turnitaround James, when you say “no migraines,” what are the symptoms you get when you have a migraine? Do you get an actual headache?

I’ve gotten headaches for years, maybe 6-12 times per year, but no one has ever officially diagnosed them as migraines. They last up to 72 hours when I get one. (Of course now with as much as I’ve read I think that’s probably what they are.)

I had one that began yesterday afternoon and I wonder whether it was triggered by me mowing the lawn yesterday morning. It was VERY hot and humid (I started too late in the morning) and I got overheated.

In the early days it was more like a headache from a horror movie with the devil himself thrown in … lying motionless (not even batting an eye-lid) staring at the ceiling for 14 hours at a stretch not even able to close my eyes because I’d throw up. This was combined with a fierce pulsing pain at the back of my head. It was something I definitely want to forget.

These days it’s much less intense … when I get them … and rarely … its more like ‘brain fog’ or a less debilitating head-crap feeling that makes you want to lie down for a while or go to sleep. It’s hard to explain the feeling but definitely neurological. It’s combined with a much worse than usual level of balance.

Would feeling drained be equivalent to it? Like tired eyes and just sapped of energy? Fatigued?
I totally understand that brain fog feeling cause I had it last night. I didn’t know what I was even doing. I said ok, I’m done, sleep time.

Yes exactly that feeling.

OK, I guess I should update this post, but let me reference some important posts since my last entry in my ‘diary’:

So today marks 3 years with MAV.

I’m close to 100% save for some annoying tinnitus and minor feelings of fluid in my ear which are very much less than they once were (and no longer occur every morning). In fact the ear pressure and fluid have been good markers for progress. My ear used to “glug-glug”, then “drip drip”, and now its more like “bubble…bubble”. I’ve been without medication now for over a year.

Yes, my balance is usually fine and i’ve been free of dizziness for quite some time.

However, I know relapse is still a risk (see above) and have to be careful with coffee intake.

That said, it’s night and day since this all began … there really is hope of improvement!

I look forward to improving further still … hopefully the tinnitus will go eventually!

here’s the summary:

WHAT’S GONE: No more nausea, imbalance, ear pressure, ear pain, extra tinnitus on bending down, significant hearing distortion in loud places, feeling of pressure in ear when driving, vestibular attacks, migraines, brain fog, anxiety, rocking, marshmallow floor, push/pull, vertigo, spinning or attacks of any kind (touch wood!), migraine brain rumbles/discomfort (usually due to artificial light), head positional discomfort in bed, . All these symptoms are gone! Able to walk through malls and supermarkets with no issues.

WHAT’S ONGOING: Only milder fluctuating tinnitus . I still get a feeling of a little fluid in my middle ear most mornings (some days its completely gone) or at night if I get up for bathroom (a few seconds of bubbling sound), but its much less than it was, a slight muffling of hearing at night and sometimes a feeling something is dripping in my ear. I get an intermittent ear clicking sound.

MY WORST DAY NOW : Annoying, nagging but low level tinnitus


3 posts were split to a new topic: A pain in the neck

7 posts were split to a new topic: How do you know you’ve got to the right dose of Ami?

6 month update

Quick update: I’m now 4 years in from the very start of things.

I really am SO MUCH BETTER. I’m almost completely normal.

My ear clicking frequency has reduced, my one sided, mild HF hearing loss is still there with tinnitus, but I have no periods of dizziness, imbalance or brain fog. Fluid sensations have all but gone and I remain off medication. I live each day more or less 100%. Relapses don’t happen anymore

Considering I at one point considered PLF surgery I’m so glad I held off and was patient (and BOY do you have to be patient!! :angel: I’ve never experienced anything like this and the mental will you need to muster to push through as all veterans will know) . I expect further spontaneous improvement and hope I’ll one day get my hearing back to normal.

If it wasn’t for the fact I run the site I’d hardly be here :slight_smile:

I discovered that sticking to decaf coffee and eliminating MSG has meant I can live and breathe perfectly normally.

I’m back at the gym, sometimes daily (on the rowing machine doing 10k’s - I still don’t lift weights or perform pull-ups for fear of overpressurising my bad ear), and I’m now looking for a full-time job.

It can be done, apparently! :rocket: Good luck everyone! :four_leaf_clover:


James! This is absolutely the best! You have inspired so many here and I have leaned on your positivity these past months. Thank you for sharing your successes with us! I wish for you an incredible future of healing and health!

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Thank you Renee!

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Thats the sort of post i love to read…
Well done you!!!:1st_place_medal:


Ah James I am absolutely thrilled for you…this is fantastic news. It gives us all hope that we too can recover from this beast of an illness.


Thank you for your post! Gives me hope ! I like what you say about patience, I’m only ten months in but I now know that I’ll need patience, and ready to accept it.



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So great to hear this James!! Your patience and perseverance has paid off. Here’s hoping your hearing will soon return to it’s former level and that you will enjoy a symptoms free life from here on out! Thank you for all you have done for us (on this site) and I think I speak for all of us in wishing you luck with resuming your life without the beast.