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

[Lorri]

Oh no James, you’ve been doing so well, but compensation/healing from VM/inner ear injury doesn’t progress linearly. You’re so getting there! Hopefully the diet and diuretics will help keep you on track!

I’m following your progress and theories with great interest, and I agree with you it can’t all primarily be caused by a wonky migraine brain 24/7! Don’t buy it either!

I’m due to start reducing Pizotifen 2.5mg from January, bar no major relapses. Dr S said it’d be a reduction of 0.5mg per month! Fingers crossed I’ll get there too. My tinnitus has reduced too, after nearly 2.5 years of this rubbish!

Good luck with the ENT appointment.

[turnitaround]

My tinnitus has reduced too

Whoop!! That’s great! We battle on.

Yeah mine goes quieter occasionally. It’s a good yardstick for overall progress. I’ve noticed much less distortion with loud noises too. My bad ear used to vibrate/rattle very easily.

Finally I’m trying “Dr. S’s” magic diet. Does he publish a detailed list?

And Nettle tea as a diuretic at first attempt. Lol

[Space_Cadet]

James,

This is the list I received from Yale university when I visited them in late July / Early August this year. A lot of the triggers seem to be on point about the ones to avoid / reduce / limit. I’ve dabbled over on that side sometimes to see what truly does trigger me. I thought I’d share this list to show you what I’ve been working with for a migraine diet which has been “helping” to reduce the mind wobble / imbalance, but I still get the imbalance sometimes like at night in the dark, when I’m tired or if I’m dehydrated / hungry.

[turnitaround]

Thanks for this. Almost deserves a thread of its own. I’ll take a look.

I know the feeling about the night wobbles. I think it could do with when leaks/vertigo most often occur because of head pressure being highest when reclined. By the following afternoon you’ve topped up fluids and have adjusted so you feel better balanced. Could also be the darkness of course.

[Lorri]

6Csdietandlifestyle.pdf (405.3 KB)
Here it is!

[turnitaround]

Thanks Lorri (and Space_Cadet). Will study these with interest. Just hope I don’t find something more I love. Lol.

[GetBetter]

Hi James,

Compensation usually happens within 90 days of assault. If it takes years then two things are happening

1. You don’t have a “stable” lesion in the ear
2. You have a migranous brain

I would have my brain take a break via meds like Ami untill both #1 and #2 are addressed. The brain can take a break while there is healing happening underneath. Until one can get their ears to be in a stable state i would not worry about compensation. Infact folks with 80% vestibular deficit from VN and Labrynthitis have compensated successfully. VRT helps greatly once you have a stable condition.

[turnitaround]

Agree.

The only obvious downside is Side Effects.

So that just leaves: taking medication unnecessarily, let’s see …

btw, I wouldn’t have dreamed of giving Am upi first 8 months or so of taking it … symptoms were just too crazy, so wouldn’t suggest anyone stop it too soon.

[GetBetter]

You probably are in the final stages on healing, if you hang in there and monitor your diet as you are doing, you can conquer this beast.

[turnitaround]

Haha, thanks for your positivity Vignesh!

[turnitaround]

Well well well. I don’t expect this to last but I have almost NO SYMPTOMS TODAY. EVEN TINNITUS IS HARDLY DETECTABLE. THATS THE FIRST TIME IN TWO YEARS!!! TWO YEARS!!!

That is all

/Jumps for joy

[GetBetter]

Clap clap…way to go…Great to hear progress…gives us all hope

[GetBetter]

Are you still going to continue sleeping at 45 degrees ?

[turnitaround]

Oh yes. No change to regime. Not giving the beast any relief ;). No doubt symptoms will return a bit but at least the trend is good and it’s useful to remember good days when the beast stalks again.

[GetBetter]

Tinnitus going down is huge. Enjoy the normalcy you deserve this after the epic struggle.

[turnitaround]

Thanks Vignesh, keep the faith man!

[Hester]

Hi,
I was diagnosed with MAV three days ago and while in some ways the diagnosis was a relief, finally I knew why I had been feeling dizzy every day for months, it also feels very restricting. I am also taking Ami 10mg but still feeling pretty dizzy (it’s only been three days tho so…), I was wondering if any of you do any kind of specific exercise for balance? I really can’t bear the dizzy spells and just want to get back to my old life.

Also a very long shot but do any of you have any experience of diving with MAV? I worked as an underwater photographer and diving was pretty much my life before the vertigo and although my doc is sure that I can go back to doing everything I did before I feel like my confidence has been destroyed, I am worried about having some kind of anxiety attack in the water or obviously getting dizzy which will probably cause anxiety as well.

One last question, does anyone else suffer much worse from anxiety when trying to fall asleep? I find the sensation of falling asleep is similar to that of the beginning of an attack of dizziness so my body jerks me awake and I start to panic.

It’s really great to read everyone else’s experience and know that I’m not the only one battling with this !!!

[GetBetter]

Diving is a very common cause for Perilymph fistula. You could have one from the barotrauma caused by diving. The lying down could cause ear pressure which can cause the dizziness. This is very similar to what James @turnitaround has been experiencing as nighttime vertigo episodes.

90% of all fistula heal with time with conservative therapy.

[turnitaround]

Yes an unfortunately I would say diving is the very LAST thing you should be doing to promote healing.

Do you recall any incident or ‘big bang’, when your dizziness began?

Honestly I am completely amazed at the medical community. You have a history of diving for a living and they explain your dizziness with migraine?! Get another doctor. That’s a huge red flag. You may be suffering from Secondary Hydrops. It’s a complex situation but essentially this may be the same diagnosis as MAV just a different name for it and a better explanation. Read my other threads on this topic. It’s a condition which emerges after trauma to the ear. As @GetBetter suggests I would suspect barotrauma.

See:

https://www.dizziness-and-balance.com/disorders/unilat/fistula.html

Secondary Hydrops is a complication as a fistula heals.

Anxiety feelings when in bed are likely to be spells of vertigo. These are leaks of ear fluid which occur mostly in bed as head pressure is higher when reclined. It can create different levels of vertigo and this can be interpreted as anxiety. You wake up because your brain thinks you are being moved involuntarily. See if keeping you head raised on at least 2 or 3 pillows stops these spells.

[Hester]

Thank you so much for the advice, I have an appointment in three weeks with the doctor to see how the medication is working, I will definitely talk to him then about the possibility of Perilymph fistula. However, I never had problems equalising when diving and never experienced any kind of bang. Actually, I hadn’t been diving in over a month when I first started to feel dizzy which is why I think the doctor thought it probably wasn’t related. Also I have no ear pain and only very occasional low level tinnitus and absolutely no hearing loss. I also saw a doctor who specialises in barotrauma caused by diving and he didn’t think it was that either (this was however in Mexico where various doctors diagnosed me with everything from anxiety to food poisoning and at one point prescribed me ibuprofen…for dizziness).

Sadly don’t think it’s a possibility to change doctors, those in the UK know what it’s like trying to get an appointment in the first place on the nhs, I ended up going private for the first consultation but obviously after giving up my job I can’t afford to carry on and do all the tests privately.