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Haya's Personal Diary

Contents

Summary
Symptoms Summary
Rough History
Start of Journal

Summary

First acute balance issues: TBD
Number & duration of acute phase(s):
Any suspicious physical event/trauma leading up to dizziness:
Start of chronic phase:
Age at chronic onset:
Started medication:
Stopped medication:
Number & type of consultants seen to date:
Diagnoses received (one I’m “running with” first):
Medications used successfully for MAV:
Failed medications for MAV:
Non-pharmalogical treatment tried which helped:
Non-pharmalogical treatment tried which didn’t seem to help :
Dietary triggers identified:
Any hearing loss in either ear:
Persistent or intermittent tinnitus and character:
Other chronic conditions I’m suffering from:
Medication I’m taking for other conditions:
Any personal history of migraines:
Any family history of migraines:
Any history of ear problems:
How did friends, family, and doctors react to your symptoms?:

Symptom summary

(Your current state)

What’s Gone: (what symptoms you had but no longer get)
What’s Ongoing: (what symptoms you still get)
My Worse Day Now: (description of the worst day you get now)

Rough History

(a bulleted timeline of your history from very first symptoms. Don’t make it too long, a “page” is enough. This is more freeform)

  • It all began when …
  • The first thing I did …

Start of Journal

Today I …

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

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.

1 Like

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

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

2 Likes

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!!

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!!

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.

1 Like

Are you willing to share your diagnosis at all. Helen

My vertigo attack started on july
Lasted three weeks and than i was totally fine
I was diagnosed with vestibular migraine
Than on sept i woke up with neck spasm and vertigo and dizziness … i am in my 4th months, i am comstantly dizzy and feel head fog and rocking like a boat
I have been to physical therapy and had alist of diagnoses until i have done full balance test
Then it concluded i have bppv and possible migraine vertigo and possible seroxat withdrawal since i stopped it without tappering
I am seeing a very good nero she totaly understand me and want it give me a month a wait and see process
She said things are complecated in my situation and a final dingonsis wont be possible until a month where she will determine if my dizziness due to withdrawal or inner ears and migraine vertigo
Luckily seroxat is also used for treating migraines
Haya

So happy that you have found somebody you can believe in and is prepared to help you. Thst should relieve your anxiety more than anything. At least you now know you’ll have a firmer idea of diagnosis in a month’s time. Something positive for you at last. I trust you didn’t have to travel halfways around the world to find her although I suppose if you did it would now seem a worthwhile trip. Good luck with the medications. Helen

Thank god , she is in my country and the top neuro
The problem is that she is fully booked and have a full schedule so i had to speak to another doctor to speak to her
A very long long story
But i am hopeful that i will heal soon .i used to be depressed over this but since i took seroxat i feel very calm and more like accepting my situation without the horrible panic

1 Like

Hi there. R u in the UK and if so are you allowed to mentioned their name and location?My Doctor referred me to one on the NHS who returned my appointment without even seeing me saying he didn’t do botox. Charming!

Haya is in Bahrain I believe. There are specialists in UK. On NHS GP has to be prepared to write referral, not so if private. If GP refuses, check legality with solicitor. If you have unexplained symptoms ongoing dont see how they can refuse. Write to your MP then. Helen

I have seen two neurologists several years ago, one privately and one NHS. I saw same one on the NHS privately as well, and goodness you can tell the difference! I was eventually diagnosed by specialist ENT last year so they think that will do! R

Dear all
It is been 20 months since i have my sever vertigo attack
And for couple of months and from doc to doct. They checked all my ear tests all came normal
And fixed the crystal of my ear
The neurologist diagnosed me with mav and did gave me stugeron for vertigo and hopping to go into remenision
I took the meds along with seroxat for two weeks and shift it to cymbalta 30 mg
According to my sphychiatric
A year has been up and down really
Did not have a major vertigo
My sight is much better
But still got the heavy head and neck pain knot
During this year i changed alot Alot
Ate healthy food
Enjoyed outdoors alot to eleminate stress
Cut off caffeine
Work out three times a week
Felt much happier even though i had still symptoms and less anxious
All this while going back go my job, and raising two kids
Now fast forward
Since i am functioning 80% most of the time my nero didnt prescribed any meds but recommended that continou my antidepressant medicines
So i am on cymbalta 30 mg daily my mood is great and wonderful
I feel symptoms of mav but i function well dunno how maybe due to the medicine the stress is so less and i wont overthink my every symptoms
So
I am planning to get pregnant and my option is Ivf treatment
I started to tapper of cymbalta cause the doctor said it is not good with pregnancy
So i tappered and i am on day 6 of no cymbalta
My feelings is weird and alittle bit low
But i am scared that a second vertigo will hit me
Cause the symptoms is still there
Also i have done full blood test cause for the past few months i felt really tired ans fatigued all the time with heavy heads. I could not move for a few steps without gasping
So my tests result
Low ferritain at 13
Low vitamine D 18
Low hb 10.5
Also i am thelesimia treat
So any advise to what to do next
I know my timing is not great since the covid 19 situation
But any advise will be helpful and how to manage it with ivf/ pregnancy

1 Like

Haya, thanks for giving us an update. I’ve taken the time to gather together all your Topics focusing on your own case except perhaps any intro post to this Topic. Can you please post all your personal updates to this Topic going forward? Feel free to edit the OP with more details. I’ve added an Edit button for this purpose.

Thanks alot :raised_hands::raised_hands::raised_hands:

1 Like

Hi Haya, it sounds like you already tapered off 30mg of Cybalta, is that correct? What was your taper schedule like? Ideally the taper should be slow and gradual, taking several months at least, maybe even a year for some people.

I did the taper with the supervision of my doctor and he told me two weeks alteration and then stop
I know the tapper is very fast and i spoke to him about but he didnt offer any other lowering or tapering plan
I am a little bit depressed specially that all clinics in my country are closed due to corona virus
I my stress level is moderate sometimes i laugh and sometimes i have crying spell
I am scared to wake up with a severe relaps
Today i have schedualled a telephone call with my nero to see what she say
What i realized is over the past year i did have Mav symptoms all the time on and off even with cymbalta
But the good thing is i was really in a happy mood
I do have ocd since a child( 11 years old )
I am holding my self strong
And also i booked for a physical therapy session to see whats wrong with my neck
I had the severe vertigo last year when i woke up in the morning with sever neck spasm that i had to rush to the er
I could not move my neck at all
The neck pain since then never went
They did xray and was diagnosed with sever muscle spasm
The pain is always there but some times when i overwork i feel sharp sore pain for a couple of days
Also i am going to discuss with my doctor the ivf procedures and my situation
I am hopefull and wishing that i will get a proper answer
It seemed dizziness could be triggered by alot of things And it is really hard to pinpoint the problem
Last year i went to a chiro she solved so many problems in my back how ever it was too painful to me to go back to her
The proccess is rough
Do you think that being anemic and low vit d contribute to make my symptoms worse
The only thing i am facing is that i am overthinking my symptoms alot alot