Diagnosed with migrainous vestibulopathy

I dont have the pressure all the day but vision is always off plus dizziness. I told him my meds and he guessed the doc who gave it to me haha. He understood that I need a second opinion because and I think he understood how anxious I am.

Just wanted to add that you can feel head pressure or sinus pain cause of the overusing of eye muscles when there is a problem with the eyes, like they cant stay on the same place and they ā€œwobbleā€ (nystagmus)

@Kon, I had the caloric testing and it showed 79% loss on my left side and downbeating nystagmus.
The downbeating (vertical) nystagmus is a MAV symptomā€¦ the 79% loss? Who knows!
The Dr who did the test told me nerve damage and the specialist said the test results were misread by the previous Dr.
What Iā€™m trying to say isā€¦ donā€™t get too wrapped up in the caloric test as the be all end all. For instance, getting a result that basically says you have only 21% of Vestibular system functioning normally, ā€œbut go on and live your lifeā€.
Thatā€™s pretty damn frightening!
Donā€™t let the results get the best of you, stay the course with preventative medication and hang in thereā€¦ itā€™s a very very slow healing process no matter what the results are.

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This doc who proposed it to me, seems promising. Can the caloric test show different results if you are on meds? Loss means it will bever be repaired? Now I am very anxious.

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Hi Kon!
So glad to hear the new Dr sounds promising and if he knows about MAV, heā€™s also a great one to have on your side! I think meds can throw the test, they will require you to quit your medications for a certain amount of time prior. I honestly cannot remember how long it was.
Loss meaning: I have no idea! He said it was ā€œnerve damageā€ and the formal test reads ā€œvestibular lossā€. The thing to remember is that even if the damage is considered ā€œpermanentā€ the other working systems will eventually make up for the deficiency. So, I guess what I am telling you in a nutshell is that it will all be okayā€¦ no matter the outcome! Time heals :blue_heart:

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I hope so too, i am just impatient. Hmm I have the appointment in 2 days and I am on meds and I think I will do the test while on meds. It would be bad to stop the treatment now in my opinion.

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I didnā€™t find the tests were useful at all. Maybe if you have something other than or in addition to MAV, youā€™ll get to know about it. Almost all the tests just serve to show you that you donā€™t have something else in addition to MAV.

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They didnā€™t tell you to stop taking your medication for the test? Any medication that suppresses the Vestibular system will throw the test results. I mean, you do youā€¦ but as much as you question your current diagnosis, imagine having a test that you canā€™t trust the results of? Youā€™ll end up with more questions than answers Iā€™m afraid. Keep us updated on how the test goes and I truly hope you find answers with this new dr. Best wishes Kon!

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I really dislike the way doctors carelessly throw around the words like ā€˜lossā€™ and ā€˜damageā€™. These are really bad words to use in front of patient and there is very little evidence of real long term damage to anything. They havenā€™t even nailed down the full aetiology other than to demonstrate that migraines can occur (big deal thatā€™s pretty obvious guys, thanks for the scoop!)

What they really mean is ā€˜currently there is a deficitā€™. Anything else is to catastrophise. Itā€™s a bit like a muscle strain where you canā€™t walk so easily now. When eventually the muscle recovers you feel fine again. Vestibular system more complex but you get my point.

I believe MAV is benign for most and that means in the long term recovery is possible.

MAV is about something in the vestibular system causing instability which is causing the brain to decompensate.

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Hi Kon

If you manage the Caloric test then I salute you! It isnā€™t for the faint of heart! I couldnā€™t tolerate it at all so didnā€™t end up getting any meaningful results. They can still do other tests to ensure this is migraine and not menieres disease.

Good luck! :star:

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Well, the doc just told me if I have the test and never mentioned to stop the meds. When I went to the other doc who said I have been going better I was on meds too when we perfomed the tests. Its just a mess, I feel that all docs trying to cash grab me cause of the complexity of this ā€œdiseaseā€. We talked on phone woth the new one and said that I should do the test for checking the ā€œfunctionā€ of labyrinth and mentioned that this caloric test will be done with air not water which is more tolerant. If we finally do the test I hope to not get worse, like to get any short of damage, I have already a sensitive ear and I had for 2 years now. I think this new doc will check my VOR, I complained a lot about my eyes.

You are not alone in this feeling.

I was lucky I got all the initial tests done on insurance ā€¦

Seriously $200 for a chat and a prescription?!

Well I have an insurance but this condition needs doctors with experience including tests that public hospitals dont have here sadly.

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There is no definitive test to confirm or deny either of these conditions. The tests offer results which are an indication. Diagnosis of MAV is mainly by taking detailed history-and is based on symptoms experienced. Only trouble with that is symptoms evolve so a ā€˜no lack of a certain pitch in hearing todayā€™ means exactly that. Tomorrow/next week that could change which might mean a ā€˜not Menieresā€™ this week could be positive Menieres the next. MRI etc type tests rule out nasties like brain tumours.

Interestingly I was never offered a calorific test. Never knew it existed at the time, me. But so far I seem to have survived without. Helen

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Me too Helen those tests sounded so horrific, I was worried they might make me feel even worse! A bit of a chicken :chicken:

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Oh I wouldnā€™t have need worry it would make mine worse. I know it would have. Iā€™ve hd experience of having my ears syringed with warm water at the doctors many times for comparison. When I did react and told the doctors they denied any connection so obviously, in UK, the very existence of calorific testing isnā€™t common knowledge amongst GPs. Helen

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I want to say that my right eye is getting worse. I get full sinus pain, it feels like is moving independently, it pains inside and its puffy and when I try to focus or look far its annoying and difficult. What the f*ck is this?

That could be migraine. @GetBetter eye swells.

Not all MAVers get that symptom.

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Well I get it everyday and to be more specific I cant use my eyes properly together if I cover one of them its better.

Yes, so itā€™s probably affecting you more on one side

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