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Final diagnosis


#1

Dear all
Last week i went to see a neuro oto doctor to have final diagnosis . I had to travel a one hour flight with no problem
Then due to my medication i am in propranolol 80 mg and amitraptaline 25 mg
The doctor said to stop medications since the ami will effect my reslts
I have done 6 tests
And all of them came normal
Except for rotary chair - i had crystal disloged in my right ear
Strangly when i stopped the meds i felt so much better. The meds was horrible and made me feel worse and depressed
I still have a dizziness when i move my head
I am much better than two months ago when i had the vertigo symptoms
I am confused . I had rotary treatment to put back the crystals back
And the doctor said i dont fit to the migraine diagnoistic chart
I dont have headaches or a history of migraine
I dont have numbness
I dont have aura
I do feel rocking sensation after the attack and felt visual disturbance and foggy head
My foggy head is much better when i carefully move my head
I can read and watch tv
I even was able couple of days to go the the cinemas with slight visual difficulties
I am scared and confused since i have been diagnosed with so many illness
Including vestibular neurtitis and nerve damage
Any advise will be helpful
Cause i am baffled


#2

Haya, you me both, to some extent.

I’ve done a lot of research since I became ill and have concluded that the science of vestibular medicine has a long way to go and there are a lot of unknowns and a lot of controversy.

Part of the problem is the anatomy - the inner ear is tiny, hugely complex and sits deep in bone. It’s very hard to image. This is in stark contrast to your eyes which are much more exposed and very easy to view in detail for example. Even measuring the pressure in your eye is sooo much easier!

Vestibular neuritis is an unsafe diagnosis and may not involve viruses. Instead up-to-date doctors refer to that condition as “acute peripheral vestibulopathy” (ie of unknown aetiology). It is also acute and not chronic, so if you are experiencing symptoms over many months it’s not going to be a virus. Viruses don’t remain continuously active for that long!

Some people are satisfied with this being called a ‘migraine’.

I am far from being satisfied with that (its far more complex than that I suspect and this diagnosis does not explain why you have a migraine, so it’s rather shallow!), but believing that does at least allow you to move on and work on what makes you feel better, rather than focusing on what is wrong with you.

I personally did not have a history of migraines and yet my first consultant diagnosed me with “MAV”. Knowing that my particular issue was brought on with an injury I immediately smelt a fish and my subsequent research has lead me to question the entire discipline.

Unfortunately with a chronic audio-vestibular condition there are a lot of unknowns and part of the fight is coming to terms with the things we don’t know.

Even if you get a diagnosis from one doctor, another may disagree. Who to believe? I saw 4 doctors and some of them gave me multiple alternatives, none of them agreed exactly. I understand why completely. Yet these were all top consultants. My current one has the chair at a major university. I’ve concluded that “a final diagnosis” is simply the one you believe in!

If you want my frank opinion I very much doubt a significant degree of these conditions involve ‘nerve damage’. That is a terrible unsubstantiated statement to make. We do not have the technology to determine that in a live human being. The alteration and/or instability in response in both your audio and vestibular senses could be for a whole different reason.

However, we do know that the MAV protocol is effective at improving most people’s condition so I urge you to focus on that.

It is normal to have to give up Amitriptyline for testing, get back on it if it made you feel better.

Good luck with your search.


Doctors
#3

I agree with @turnitaround. I’m sure you’ll find his post helpful. These vestibular conditions are little understood generally and little researched. I think it’s most unlikely you will ever get a ‘final diagnosis’. Even if you chased half a ways around the World looking. Best just follow the MAV protocols, meds, diet, lifestyle changes and try not to worry too much. If all tests were ‘normal’, it’s not going to kill you so try to live your life doing as much as you can without aggravating symptoms more than you can bear. Try not to get overanxious about it. You may find it best not to read too much on the internet about it either as that can often increase anxiety, do things you enjoy, TV, the cinema and just live. Best wishes Helen


#4

You said it right
I am currently anxious to know whats wrong
And me meds is giving me hard time and had to stop them
I think i will go wilth the diet and live my life as possbile
Also iam too much surfing the internet to seek answers


#5

Yes. It’s compelling, but it can make you very anxious and you can start thinking of the worst possibilities.

Believe that your body will be doing everything it can to fix things.

The diet is definitely worth a go!!


#6

Sadly, the internet does’nt have answers either, and as James says, too much research can sometimes be depressing. Just try to take one day at a time and do as much as you are comfortable with. If the meds don’t agree with you - give them a miss. EVERYTHING seems to effect people differently, so just try to find what’s best for you. Giving the diet a try cannot hurt - many find relief that way.
Good luck!!


#7

oh we all have been there, but in terms of MAV, this is the site with the best info and best support community. It’s hard no to google things but try not to. Hope you start feeling better soon.