Vestibular Assessment?

[micheller]

I seen a new neurologist today. She's not convinced my dizziness during movement is caused by pots? She scheduled me for a vestibular assessment. She thinks I have an inner ear problem because my symptoms get worse when moving/driving. Anyone have this test? What does it involve?

[HopeSprings]

There are lots of different types of vestibular tests. Did she specifiy which one? "Vestibular assessment" probably means the Dr. is sending you to a neuro-otologist or a testing facility that will run different types of dizziness/inner ear tests.

[micheller]

Yes, she said it was for vertigo. She didn't go into details on what the test entails though.

[HopeSprings]

My guess is it would be an ENG. Here's a description of various vestibular tests: http://vestibular.org/understanding-vestibular-disorder/diagnosis

Hope you get answers and let us know what happens.

[diamondcut]

Hi Michelle

Like Niomi has posted i think this will be the exact vestibular testing you will have to go through. I will be honest with you, the rotary chair test, and there is one where they lay you on your side and poor warm water in your ear until you have this drunk feeling come over you, you have to focuse on an x on the wall whilst laying down, and the world starts to move. Its very unpleasant and you really need to have someone with you for them all as they are not nice.

I had exactly the same thing as you , i had to stop driving in fact, i couldnt read a page on a book or look at my laptop, i couldnt even have a conversation with 2 people at the same time, becuase i couldnt look from left to right without the world spinning.

They said to me that although the EDS/POTs were causing nausea and sickness the vertigo and extreme sickness, something else was up. The did send me to a ENT specialist for all those tests. They were looking for BPPV

http://en.wikipedia.org/wiki/Benign_paroxysmal_positional_vertigo

Or any other inner ear related proplem. Anyway after a lot of balance tests/hearing tests and many more later, they diagnosed me with Vistibular migraine. How ofter do you get migraines or headaches if at all? At the time i wasnt suffering from daily chronic migraine which of course is plainly obvoius, but i had maybe 1-2 migraines a week. I was told that if you have a migraine, even once you have recovered say the next day, the messages in the brain can get scrambled and you can suffer from dizzyness, vertigo and nausea even though the migraine has gone. I was given whats called vestibular rehabilitation exercises. I couldnt do them sadly becuase my migraines just grew and grew and therefore the exercises would trigger them!!! You cant win!!! But in my case it was proven it was down to migraine.

It sounds a good thing that they are checking all avenues with you though, but maybe you should think about seeing an Nuero if it could be headache related after or with the ENT.

[Katybug]

I've had several types of vestibular assessments. I didn't feel too swift after any of them but I technically didn't have positive results on any of them. I did have I physical therapist put me on a machine that strictly tests your standing balance unrelated to any vestibular issues. That showed significant imbalance for my age and that's why he referred me for all the vestibular testing (he actually specializes in rehabbing people with vertigo.) The PT and the ENT said they had not seen anyone with that level of imbalance without vestibular issues and were never able to explain my test results. I have no science to back this up but I believe its another part of dysautonomia that isn't understood yet. Before I got sick 5 yrs ago, I was super balanced....great at yoga, horseback riding competitively which has a lot to do with balance, standing on one leg to stretch the other, gymnastics as a kid. It was one of the symptoms that really worried me when it developed.

[micheller]

Diamond, I get headaches/migraines daily. I'm fine before I get out of bed in the morning. Then I get this gush feeling in my head and instant headache. I've never had ear issues so all of this is new to me. My neuro scheduled this test. The chair sounds awful. Any type of spinning is bad. What kind of exercises were you supposed to do? She had me walk heel to toe which I did ok, I don't usually have a problem with reading but driving is a huge trigger.

Katie, I used to do yoga and pilates too. I look like a mess if I try that now. I think I do ok balance wise as long as I can keep my head looking forward. If I look down I get off balance. I just figured this was another symptom of pots.

[diamondcut]

Hmmm, i am the same i get headaches or migraines should i say as the day progresses, they are worse by 8pm. You might find if they do not find anything wrong as such with the ENT you should see a headaches specialist and perhaps try a daily preventative for migraine. I have issue that all cause nausea but migraine, even when the attacks have gone is by far causing the worst. The exercises were really simple like holding a credit card in front of your face and moving it left to right and having to stay focused on it. Its to re train the brain with visual and movement stimuli. BUT you have to have your migraines under control by medication before you can attemp this else it makes things worse. I havnt done well getting on a migraine drug, botox has been the best relief. I never realised how much of my nausea and dizzyness was down to migraine.

[anna]

The thing that confuses me a tad is that migraine's are noted as common in EDS patients more so that non EDS folk, so is their more of a link to EDS than we think?!

[diamondcut]

There must be Anna,

I saw prof Aziz last week, i know you told me you have seen him before, he and others have had to make the medical world in the UK recently accept that the data they have produced (specifically EDS ) is causing GI conditions, Nuerological problems etc etc. He said even with the new raw data they have provdided, they are still facing doubt from other DR's. He said there next step is to apply for funding that looks into correction the collagen gene in EDS. I think its so unfair that if they can prove things like migraine exist in EDS patients more commonly than non EDS people, then why cant there be more funding to find out why. I guess until more awareness of POT and EDS exists it just wont happen. I should have asked his opinion as to why. I have had mixed opinions about it being anything to do with the blood vesells over dilating..I know you did post a very interesting link to that last time i mentioned it to you.

If our entire body structure is faulty if you like, then i would say its obvious as to why we get so many different types of health problems. Its just frustrating at the pace the medical world looks into it. I love it when you read an article about EDS in the newspaper from time to time. They make it sound like EDS is such a simple thing to have, they usually say the person suffers from loose joints and pain and has velvet like skin. If only that was all EDS brought to the table!!!

[anna]

I understand where prof. Aziz is coming from lots of Dr.'s seem to be going down the route that EDS is just Joint hypermobility and it is very very common in the general poulation. I think much of this comes from the fact that they can not find the genetic faults that cause EDS3 and half of EDS1 until they do we are stuck I think!!

[bellgirl]

Went through all this ENT testing by a wonderful Dr. Pappa Jr. in Birmingham. Make sure to go with someone to drive you, because the water test will make you dizzy. I had tests for Meniere's as well. There were 4 tests all together. My tests were negative, but something was "strange" with my results. My doctor actually diagnosed my dysautonomia, because he had done a thesis on Autonomic Vertigo. That was my main symptom at the time. I had silent migraines, and visual issues, too, which were all resolved when I started getting treatment for the tachycardia. He sent me to the Autonomic Disorders/Mitral Valve Prolapse Center of Alabama in Birmingham, and the rest is history. I take many supplements with my meds, and have several other diagnoses too below.

[micheller]

My test was scheduled for today. I got there to check in and the lady told me I had to pay $200 up front. I asked if they could bill it and she said no, I had to pay the $200 and the rest would be billed. I told her I don't have that considering it's almost Christmas and I'd have to reschedule. She told me they require a 2 hour notice and I'd be considered a no show. I now have the test in 2 weeks. I'm not sure I'll have the copay by then but I'll try.

How long do the effects last after the test? I don't want to be down too long. My son has his Christmas concert that night.

[sue1234]

I have had all that testing, also. In the end, the doctor said my testing didn't show anything. But, the guy that did the hearing part of the testing said something was strange, but didn't elaborate. All I know is I can't drive because my eyes don't seem to accomodate well with the movement. Also, I have trouble reading as my eyes don't flow smoothly. I have always called my eyes "jerky". Yet, I am "normal".

When I had the water in the ear testing, it only affected me for 5 minutes or so. It did not stay with me when I left the testing--I felt my normal self.