New here
 

I am needing help and thought maybe someone here has some knowledge. First I was diagnosised years ago 22 with bilateral vestibular loss. I have lived with off balance and veritgo for years. The doctors don't give me an exact diagnosis. Have been told it could be hydrops, Autoimmune inner ear disease, migraine or ototoxic exposure. I don't have all the symptoms so many here list. I mainly have off balance, vertigo, blurred vision, nystagmus, ossillopsia, I tend to have lower blood pressure but not extremely low usually 90 over 65 or so but it can be 100 over 70. I am overweight from lack of activity. I have migraines that start on the left side on the back of my neck and go over my head into eye. I walk like I am drunk. The more activity I get the dizzier I am. If ride in a car I feel like the car is moving after I stop the same thing in an elevator. I can't travel more than about 25 miles. I have tinnitus but no hearing loss which is the biggest reason they won't say I have Menieres Disease as usually those people loose hearing as well as Autoimmune inner ear disease. The doctors elude to those two things but won't say yes because I have normal hearing. I also have severe acid reflux and throw up food if I eat but small amounts at time as well has have irriatble bowel. I had an MRI in 1997 and the said I didn't show chiari and then had another one in an upright MRI machine that showed compressed disc with fragments but no chiari. I am wondering if these MRI could be wrong does it take a special doctor to really know. Would it be more likely to have Chiari if you have short neck. I don't have a short neck I would say mine is a longer neck at least it use to be when I was younger now with extra weight it not. Anyone have any thoughts?

Linda

Hello and Welcome to Neurotalk!!
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I'm sorry to hear what you are going through... I don't have any answers as I am not familiar with Chiari nor Autoimmune Inner Ear Disease. Hopefully someone will be around shortly who has more knowledge in this area.

I just saw that you are new here and wanted stop and say hi and welcome you to our little corner of the world.

Please feel free to roam around and join in anywhere.

If you need any help or have any questions please let us know... someone will be around shortly to help you in any way we can.

Hope to see you around...
Abbie

Hi Linda! :Wave-Hello: Welcome to NeuroTalk!

Hello Linda and another Welcome to NeuroTalk here. You really have alot on your plate, so I'm glad you found us. I don't have alot of knowledge on Chiari's, but my niece has it and her headaches are excruciating too.

She is on a pretty good dose of Topamax, but it doesn't take all the pain away. The surgeon wants her to have corrective surgery for it, but she is hesitant at this time.

Please take a look around and make yourself at home.

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Symptoms
 

Abbie AfterMyNap thanks for the welcome.

daisymay thats sad for you niece. Its a big step surgery. I can understand her being hesitant. Hopefully some day she can get the right help and feel comfortable doing it.

razzle51 I looked over the symptoms and have a lot of them. thanks



Linda