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My journey to Hell ... and (almost) back.


#141

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!


#142

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:


#143

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.


#144

@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.


#145

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.


#146

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.


#147

Yes exactly that feeling.


#148

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

https://www.mvertigo.org/t/i-was-going-to-wait-for-a-few-more-weeks-but-what-the-heck/15842

https://www.mvertigo.org/t/just-went-for-my-first-swim-since-the-beast-came/16416/11

https://www.mvertigo.org/t/just-had-a-week-of-100-without-any-medication/16482/12


#149

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


New regular symptoms
#150

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