Newbie without dx!

Hello everyone,

I’ve been a member of the board since a few months but some one suggested to check this forum as well.
So I did :smiley:

It all started in May. I woke up one morning with a ‘clogged’ ear, it felt like it was blocked or something. Almost dead.
I went to see the doctor, he said it was a retracted eardrum and that it would go away. I think at that point I might have
experienced some form of sudden hearing loss without realising it. I thought the eardrum was causing the weird feeling.
Than a few weeks later the tinnitus set in and also maddening, fluctuating ear pressure.
Went to see an ENT. Audiogram showed high frequency hearing loss. My tinnitus is also high and pulsating.
Did a balance test, no signs of disfucntion. He gave me betahistine.
After two months I started to feel really tired. Extreme fatigue every day. This has not stopped since. I’m dead tired every day.
I also have extreme headaches. Sometimes stabbing pain on other places on my head.
I do not have vertigo in the classic sence but I constantly feel ‘off’, experience imbalance and sometimes a rocking sensation. It catches me of guard.
When I focus, like doing VRT, I seem to be doing pretty ok.
In the mean time I’ve seen different ENTs and neurotologists but I still don’t have a dx.
I’m now on 2 x 24 mg betahistine (used to be much higher but didn’t make a difference) and started amitriptyline about a week ago.

So that’s me in a nutshell. Not sure if I belong on this forum or not but I’m not sure of anything these days :wink:


Hey BG, nice to meet you :slight_smile: I hope that you get a diagnosis soon… I won’t give my “medical opinion” as I’m not a doctor and it’s not my place to say, but after 7months I think you are very deserved to be here - WC

Welcome Belgian Waffle (but sorry you have to be here),

Your symptoms certainly do sound like migraine (which is not to say that’s what you have or that you don’t perhaps have more than one issue). I think it’s safe to say the headaches, rocking and visual problems are not Meniere’s disease but much more likely migraine. Your hearing loss also suggests you don’t have Meniere’s, as Meniere’s is low frequency hearing loss.

It’s a shame you’ve been to several specialists without a definitive diagnosis, very frustrating. I would have thought that they could at least rule out various things. Can you provide more information on that?

I’d suggest at this point you see someone who understands and is an expert in migraine. I’m guessing you’re in Belgium? :slight_smile: If you can make it to London a lot of our UK members rave about Dr Surenthian (sp). Richy from Switzerland made the trip just recently and found it extremely worthwhile, particularly as he wasn’t having much luck with the Swiss doctors. Might be worth you looking into this too.


Thanks for the welcome!

As for ruling things out. They ruled out a brain tumor or a sinus disfunction.
First ENT left me with no dx, the next one ‘definitely Menière’s’ (because of the pressure and hearing loss), another one
just put me on prednisone. First neurologist I saw thought it was all in my head. But of course it is!! :evil:
ENT I’m now seeing thinks it’s either some form of hydrops or MAV.
This week I saw a neurotologist - who is ont the Belgian Menière’s board/waiting list of 4 months - he said, definitely NOT Menière’s because of
the hearing loss.
I have done several bloodtests, did another big elaborated one last week. Results in next week.
Oh and seeing a fysio-therapist on Friday because I have reverse cervical lordosis. I think it’s a result of trying to keep myself awake, bad posture etc…
What else, another apointment with a different neurologist next year.
I also wear a night guard because I clench my teath at night. I think it’s a stress related factor. I didn’t do this before.
Don’t think I have TMJ but I can’t open my jaw straight. Doesn’t hurt though.

I’m just a train ride away from London, so that could be an option! Thanks!! :slight_smile:


It sounds like you have a diagnosis of MAV.

I’d encourage you to read, read and read this forum. There is so much information on here which will help you. And ask questions. We’re all here to help.

I too have some back problems (kyphosis and scoliosis - both mild) and TMJ (really really bad!). They are separate to MAV but can exacerbate things so if you can treat them you will hopefully get some relief.

My recommendation to you at this point is to try all the diet and life style modifications and if you get no joy there then it’s time to consider some migraine meds.

Hang in there!

Hello Victoria,

I’m reading reading and reading. Very useful information!

How do you cope? Are you on meds?

ENT wants me to take ami 10 mg (double after 3 weeks) and neurotologist proposes to take Zoloft on top of it.

I’m already changing my diet but I just found out yesterday that my body is making antibodies for anti tissue transglutaminase, which
coulb be an indication for celiac desease. Need a gastroscopy :frowning:
If I have to eat gluten free on top of the HYH diet, I’ll be eating nothing??! Let’s wait and see.


Hi BW, your story sounds very much like mine. I was first diagnosed with menieres in my 20s after a caloric test showed an abnormality and I had slight hearing loss. Then I was diagnosed with basilar migraine (my migraines were at the back of the head). Another ENT, and after an ECOG test where I showed up abnormality, and had vertigo during the test, was diagnosed with endolymphatic hydrops. Back to neurologist, diagnosed with vestibular migraine. I just think the two are connected. I went on the very low salt diet and lower fluids, which did nothing for me. I have bee told I have an eardrum that sucks in (or something). I have tinnitus almost all the time. One ear often feels blocked. I have been on the betahistine for many many years, it helps but its slow and not noticeable to start with, if I come off it, I notice it, but it doesnt control everything.

I had motion sickness as a child (did you? theres a clue to migraine), I had abdominal pain as a child when I got upset (now know it was abdominal migraine), I get the zig zag flashing lights before bad migraines. Do you get numbness or tingling around your mouth or chin?

I also feel very tired, fatigued all the time. I also get achiness like the flu (so they diagnosed me with CFS). I have antibodies too, to my thyroid, also had iritis and other autoimmune stuff going on.

I did the TMJ thing and was told my “bite” wasnt right but couldnt keep the guard in my mouth at night.

So your story is very similar to mine. I am very med sensitive so unfortunately havent been able to tolerate them. Diet and lifetstyle make a difference as does avoiding stress (my biggest trigger).

If I have MAV, then I would say you have MAV!


He Christine,

I also had an ECOG test and it showed some abnormality BUT they said it was inconclusive!
I have balance problems but I did the test with rotating chair and goggles, nothing! No nystagmus etc.
When I first went to see a doctor he said my eardrum was retracted and that it would go away.
I’m also on betahistine, I have lowered the dosage though. My ear often feels blocked and is very painfull. Knife stabbing!
I just wonder how can migraine cause these symptomps?? But I could have hydrops on top of it?

Yeeees…Motion sickness as a child!
No numbness or tingling, I do see ONE silver/white spot in my right eye on a regular basis. It wasn’t there before though.
Don’t know what it means.

I wonder what’s making me tired? The possible migraine? The hydrops?
The antibodies?
Even though I’m tired as hell, I try to exercise twice a week. I’m only doing some strength and maybe 5 min on the crosstrainer.
Because more cardio gives me more headache :frowning:
I used to dance 4 times a week, I really miss it. It sucks.

Well the bite guard seems to be working, I don’t catch myself clenching my teeth anymore! But I don’t feel better in the morning though.

Your story shows some similarities indeed! So your ENT says hydrops, your neuro MAV?
Thanks for sharing your story.