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Off Balance Getting Out of Bed

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Old 07-02-2008, 09:58 AM   #1
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Join Date: Oct 2003
Location: Alpha, NJ USA
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Sillyme03 HB User
Off Balance Getting Out of Bed

Long story, but will try to cut it down a bit.

December 24 08, I had room spinning twice. Went to Dr. and he sent me to a local balance center. Had goggle test and they said I had BPPV. Meanwhile because of this and daughters serious illness, my anxiety came back with a vengance with symptoms like internal shaking daily, loss of appetite, frequent bathroom use, falling asleep 830 and more. I use tiny doses of ativan to help with shaking.

Went thru some VRT and epleys and no more room spinning, however I still felt off balance and not right. Don't know if its from anxiety, low BP or what. I had bad insurance with high deductibles then so only went once a week mostly, twice occasionally for about 2 months. Also, some days my anxiety was very bad. ( anxiety is new since I turned 43 in 2003, never had it before then).

I had a bout of anxiety in 2003 for a few months, but never affected inner ear or had off balance feeling. I had 4 years of a near normal life until 2008.

The last few weeks, a few times a week I get up out of bed ( I sleep only on my right side as I am filled with terror to go on my left as that was the bad side) I feel off balance, hard to take a few steps straight, have to hold onto dresser, lightheaded.

I never had this before and don't know if its ear pressure related, anxiety, hormonal (peri-menopause) or other.

I will be seeing a better balance Dr. ( at balance center was just nurse practicioner and DPT)on July 8th at a place where they can do more testing. Dr. is a neurotologist so I am hoping he can give me some answers. I went to a local ENT who said everything was fine, but only did hearing tests.

I don't think its my BP because in 2003 it was lower and I never had this getting out of bed issue, but I am not sure. I also know that sometimes, like this morning I get up slow and felt horrible, like before a room spin, but thankfully nothing spun, and my heart started racing like crazy. I took my BP to see what pulse I had when it calmed down and it was 94 calmed down. I am sure it was over 100 at the start

Could the getting out of bed be inner ear related? I am going nuts here with all these symptoms and really just want to be normal again.

Last edited by Sillyme03; 07-02-2008 at 10:00 AM.

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Old 07-02-2008, 12:15 PM   #2
Join Date: Jan 2008
Location: Panama City, Florida, USA
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Momof2sons HB User
Re: Off Balance Getting Out of Bed


As far as your room spinning balance issues, try looking up "Semi circular canal dehisents" and see if these symptoms fit yours. I between the ages of 40-42 had these symptoms come about. My balance got to the point at times I would walk like I was drunk, and I DONT drink! If I was on uneven ground my balance was also off. I would decribe it as "My bubble was off" as though using a level and the bubble was off. The room spinning was the worst and happened ALOT when I'd lay down at night, and upon rising in the morning.
I finally was diagnosed at a major medical facility through extencive balance testing with "Superior semi circular dehisents" which is a congenital defect within the inner ear. There are three closed chambers of bone in the inner ear which has fluid in them, well what this defect is is during development the bones didnt form to the correct thickness, and as we age, our bones thin, until one of these chambers broke, causing this fluid to leak, causing all the balance issues as well as the room spinning effects.
There is a surgery for this and its a pretty significant one at that. They made a 3" hole in my skull (middle fossa craniotomy) and lift the brain to get to the semi circular canals, they plug off the defected canal, well with me when they got in there they also discovered when they lifted my brain most of my skull base in the middle fossa was also MISSING. Many people who have this defect, their skull base is like "swiss cheese" but with mine it had actualy broke off. They created a sling of sorts under my brain to repair this problem.
I had had multipule CT scans, MRI's of my brain and none of this was ever detected in those. It takes #1 a Doctor to suspect this defect, and order a CT on the temporal bones themselves to find this problem.
The reason the room spinning dizziness is'nt continuous is it happens when the fluid is actually leaking out, so sometimes when you change position like rolling over in bed can stop the spinning symptoms sometimes.
I did have this surgery, and as a result I have lost total hearing in that ear, but the spinning stopped! My balance was horrific right after surgery giving me doughts as to having the surgery, I had to use a walker just to walk around my house. But what it is is the brain needed time to adjust to working off two chambers instead of three, and the only way for that to happen was to keep walking. I had this surgery a little over a year ago, I still have some balance issues expecialy if Im in the dark. The eyes and ears work together in our whole "balance makeup" so a dark room is'nt my friend. Balance is better, but not 100%. I did recently take a long train trip, and it was real rough ride, really threw me around physically for 20 hours. It took me three days to get my equalibrium(sp) back. I do have other medical issues that also come in to play so as far as being real active at this point I can't be for other physical diseases, so I dont know how things would be if I was able to be as active as I used to be.
I hope you get some accurate answers from this new balance doctor you will be seeing. And get to the bottom of your room spinning, balance issues. The test that pinned down this possible diagnosis for me was part of the ear testing, where they would have your ear plugged one at a time, and for me it was a certian sort of clicking noise, at a certian freqency that my eyes went nuts, jumping in all directions, just when my left ear was tested. My right ear didnt bring on that symptom. So that prompted the CT scan of the temporal bones, and nailed down the diagnosis. It is misserable to live with, and Im glad mine is better.
I know there are many inner ear issues that can cause the dizzy symptoms ect...But when you mentioned you feeling "off balance" issues it caught my eye. This is a RARE congenital defect as a matter of fact my neurologist that I see localy had not heard of it and when I was diagnosed by the major medical facility I brought her a print out from information I had found online. Since I have had my surgery a little over a year ago, she has diagnosed 3 MORE women with this! She sends them to a major medical facility and a Otoneurologist does the surgey. Before that she had never heard of it. She actually thanked ME, for bringing her this information, which gave her the ability to diagnose these other patients. I'm was happy and I felt as though I had a small part in saving these other women from years of suffering without a diagnosis. Really makes me wonder, just how RARE is this really? How many are out there and just being missed diagnosed? Interesting too, as how it has been "women" in any case I have heard about also. I have only heard of a total of 5 cases of this including myself, and they are all women, don't know if staticaly that holds true or not..but find it interesting.
Anyway, It might be worth you looking this up, see if it could possibly fit your situation, and if it does then maybe you can ask for this sort of testing, at the very least it could rule out or in this rare defect, as being the problem.
I wish you the best, and please let us know how you make out with this new doctor.
Take care, and God bless.

Old 07-02-2008, 12:26 PM   #3
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Join Date: Oct 2003
Location: Alpha, NJ USA
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Sillyme03 HB User
Re: Off Balance Getting Out of Bed

Thanks for the information. It sounds like you went thru an ordeal! I hope you quickly recover, as I know it takes time.

I have not had spinning past the first 2 episoded thankfully, but the off balance and woozy feeling is still here. When I go the 8th I will see what they say and what tests they do or recommend.

I am going to a specialized place that is a neuroscience institute at a teaching hospital in NJ. Has tons of specialized neurologist in all kinds of specialties. I am going to the ear/balance Dr, so hoping he can help. I have not had recent CT or MRI, but will see what they recommend as far as hearing test. Their website offers many tests

I am just trying to figure out of the getting out of bed is ear related or not. The feeling is horrible at best.

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