Scott:

I have a question for you regarding the recovery as you seem so knowledgeable about all this. I have had this 18 months but the first 11 went undiagnosed. I have been taking Zoloft and VRT last 7 months. (1) Do you not really recover if you do not treat the problem. First 11 months my gains were minimal. (2) Last seven months I have improved slowly. I have 5 decent to good days and 1 to 2 bad days. Symptoms are still their just the intensity is not as bad. I have the, mild blurred vision, mild chronic nausea and mild feeling of off or sick. I describe as dizziness. No vertigo, no balance issues.
My diagnosis is very vague. I went to two Neuro-Otologist who both said their is something going on as a result with the vestibular testing. They can not really pin point the specifics of the problem. Due to the testing they said they only can test certains parts of the vestibular system. They do know its not functioning properly . VRT is usually how most are treated. I have had a lot of others tests, ruleouts and specialists with nothing found. I am more functional now just very uncomfortable a lot. Blurred vision has seemed to go away. Is the ups and downs weekly part of the recovery process. Some reason my bad days are usually earlier in the week. Is their anything else you think I can do? I am also doing CBT.

Thank yOu,

Hi Howie
Apologies for butting in here, but I wanted to share with you what a consultant told me about recovery. He said that even without vrt I would still get better but the vrt will just help the process along. I think of it that the brain would get used to everything after a long enough time, but the vrt just means that the brain gets used to it quicker, so helping the recovery to come about quicker.

I just wanted to reassure you aswell that I get the dizzyness changing on a daily basis, one day I will feel okay, and then the next day I will feel really off, and I spend the whole day wondering what it is that Ive done to cause it. Its definately the not knowing what causes these ups and downs that frustrates me, although Ive recently been talking to Scott about vision and I think that vision definately causes most of the ups and downs.

Hope that helps, hope you didn't mind me butting in here.
Hope you are having a good day today
Tesss

Tess:

Thank you and butt in whenever. We all can use all the help we can get. I have a feeling mine is vision related as well. The first symptom I have is vision. Although now the vision does not bother me as much. Its the nausea and feeling weird or dizzy. I am feeling not great today. These are the days I stress and make it worst. I wish I can manage this better but I know its hard.
Problem is even the specialist are guesssing to a point as they just do not have technology that can help them with this as much as they would like.



Howie

I have a question for you regarding the recovery as you seem so knowledgeable about all this. I have had this 18 months but the first 11 went undiagnosed. I have been taking Zoloft and VRT last 7 months. (1) Do you not really recover if you do not treat the problem. First 11 months my gains were minimal.

Hi Howie - from what I know just getting on with your life as best you can actually treats the problem - a natural sort of VRT. And it sounds like you're definitely doing that and more. Another thing that can screw up recovery is vision. If you have a bum eye, and need glasses, then this needs to be sorted to aid compensation. Subs experienced this first hand. Lastly, and this is my expereince, anxiety and/or depression will grind compensation to a complete stop or at best a crawl (which it already is!). It never ceases to amaze me just how tightly linked anxiety and the dizziness can be. And if one goes up, so does the other. Did you notice some immediate improvements on the Zoloft? I'm always interested to hear about that. In my present decomp state I am getting symptoms you describe that wax and wane. Sliding off my chair one minute and OK hours later as the brain locks in the compensation.

(2) Last seven months I have improved slowly. I have 5 decent to good days and 1 to 2 bad days. Symptoms are still their just the intensity is not as bad. I have the, mild blurred vision, mild chronic nausea and mild feeling of off or sick. I describe as dizziness. No vertigo, no balance issues.
My diagnosis is very vague. I went to two Neuro-Otologist who both said their is something going on as a result with the vestibular testing. They can not really pin point the specifics of the problem. Due to the testing they said they only can test certains parts of the vestibular system. They do know its not functioning properly . VRT is usually how most are treated. I have had a lot of others tests, ruleouts and specialists with nothing found. I am more functional now just very uncomfortable a lot. Blurred vision has seemed to go away. Is the ups and downs weekly part of the recovery process.

absolutely - this was my experience too. It varies daily. And as Tesss mentioned can be upset very easily by visual input (which presumably conflicts with the bummer signals travelling to the brain from the damaged semicircular canal).

Some reason my bad days are usually earlier in the week. Is their anything else you think I can do? I am also doing CBT.

I think you are covering the bases well. It would be nice if they could zero in on exactly which canals were damaged to perhaps give you a more tailored VRT program. i think this is what they have done for Crazylabyrinth. Prof Halmagyi - in Sydney - has developed a very clinical step-by-step process for accurately assessing all of the semicircular canals. I wonder if you could find someone in your area that follows the same routine - caloric, head impulse testing etc. I'm hopefully having this done soon so might have new info to post on it soon.

Really feel for you carrying this burden for so long. It is very draining, not just on us, but on loved ones too. Hope you see some big improvement soon. The fact that you have good days is a very good sign I think.

Best...Scott

Scott:


Thank you for your reply you are very informative. Zoloft has helped at least with some of the anxiety symptoms like sleep, pulse rate, shaking. I have been doing so much as far as VRT, CBT, meds its hard to pin point what has helped the vestibular. I defintely still have a problem with the anxiety. Even though I have had so many tests and from the help of people like yourself I know my symptoms are consistent with vestibular problems but I still worry on bad days...I need to control this as this like you said is not helping me any


As far as vision problems I used to have some but had the lasik surgery so its not a huge issue besides what this vestibular problem is causing.

I wish I can get more tailored VRT and tests. Its just so difficult from my understanding. My doctors said the tests out their just do not give you a clear picture of the vestibular system. Just certain parts. They know something is not functioning correctly. Doctor said its probably the messages between the brain and inner ear. Since VRT is helpful they try this with most. Crazy Lab has had hers tailored but even she still struggles so it is not an exact science.


Thank You for your opinion and I wish you the best of luck as well