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ANOTHER POLL: Do you have good periods, then bad, then good, etc.

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Old 10-16-2003, 02:42 PM   #1
Join Date: Aug 2003
Location: Chillicothe, MO, USA
Posts: 352
dizzyinmissouri HB User
Question ANOTHER POLL: Do you have good periods, then bad, then good, etc.

Hi, All!
After having about 10 days of feeling better, I am struggling with this internal imbalance thing. Just a sense that things are going on in my head even tho' nothing is actually moving around me. Weird sensations that send anxiety thru me. Like a feeling that things are going to just take off and spin, but they don't. Anyway, it seems like most of you have the ups and downs and I think this is part of it.
I did call the physical therapist at the Chicago balance center today and this is how she explained it to me.
She said the feeling of imbalance coming over me with no actual spinning is decompensation. She assured me that this will happen and that I need to be faithful to keep doing balance exercises and doing things to keep my brain compensated. She said there is a tendency to want to sit around when we feel bad but the best thing to do is to keep going and to keep doing the exercises. She said that attitude is so important and being determined not to give in to this thing is essential. She said that I have to come to the place that I realize that even compensation is not "fixing" the problem and to realize it is something that will always be there (damage to inner ear from virus). She said there even has to be a grieving process in the loss that we have. She said the reason so many doctors don't really know completely what to do about it is that it has only been about 5 years since they have really recognized this disease and are looking for ways to deal with it. She said it is a very misunderstood disease that there is still alot they do not know. Which is why we all struggle to find answers. Anyway, it was SO good to talk to her cause she is the only one I can talk to that really understands what I am going thru. (Besides you all )
I told her the other day I just was feeling pretty imbalanced but really needed to go to the grocery stores. So, I went and decided I would just turn around and come home if I couldn't deal with it. I landed up making it through two stores and felt great! She cheered me on and said that it is that kind of mindset that will help me get better.
Anyway, please let me know if you go up and down with your bad and good days. Would love to hear from you all and hope the info above helps.
(The Lord is my strength and salvation! in whom shall I fear! Not even this dizzy monster!!!)

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Old 10-17-2003, 01:15 AM   #2
Join Date: Jan 2003
Location: Australia
Posts: 381
Jen30 HB User

Hi Dizzy

What an understanding doctor. You really have hit gold there. She speaks as though she's experienced this herself.

To answer your question...YES! Welcome to the rollercoaster of recovery. The good phases get longer and longer, but oh so slowly.


Old 10-17-2003, 05:55 AM   #3
Join Date: Nov 2002
Location: UK
Posts: 1,400
Emsybobs HB User

I think your therapist is right in that we do have to accept the inner ear is never fixed so could come back. Also I totally agree with the grieving process.

Yes I certainly do have setbacks. At the moment it seems like one week good, one week off. It's v disheartening isnt it as just as you feel you're getting better...then wham.


Old 10-19-2003, 08:30 PM   #4
Senior Veteran
Join Date: Sep 2003
Location: Sydney, Australia
Posts: 2,296
studyin HB Userstudyin HB Userstudyin HB Userstudyin HB Userstudyin HB User

I *really* understand this today! And it's really disheartening alright. All last week I thought I was almost over it (after 7 weeks) and then on Friday - Whammo. Now today I still feel pretty horrible. Probably doesn't help that I only got 5 hours of sleep last night. Why do some of you say it can easily come back? I've read a lot of stuff that says it's a once-in-a-life-time event - ie, that the chances of NOT getting again are around 95%. Please, I hope that's true.


Old 10-20-2003, 05:55 AM   #5
Join Date: Jan 2003
Location: Australia
Posts: 381
Jen30 HB User

I feel I have gone through the grieving process and have come out the other side. My instinct tells me I'll be a little "off" for the rest of my life. I have accepted it, and as long as it stays at the low levels it is at now, I'll be ok.

Scotsman, I hope you're right and it'll go away completely one day, but I figure that I haven't been a typical lab case anyway (i.e. come and gone in 6 weeks) so I have reached acceptance.


Old 10-20-2003, 07:02 AM   #6
Senior Member
Join Date: Apr 2003
Location: Hampton, VA, USA
Posts: 100
navelis HB User

Hi Jen and Scotsman,

Although I have my good, bad and horrible days... I believe that we will eventually be normal again. Somedays it just doesn't seem like it, but I do believe we will be okay again. This is just a very slow process... very slow. Our labyrinth is very small- I think the size of a dime. Just imagine a virus getting into a small labyrinth of that size. For one, it's hard for that to go quickly- unlike our stomachs, when we get a virus there- it doesn't last long at all.

Then, once we get rid of the virus- we have to recover. And, because the ear is so sensitive and our vestibular system is so damn sensitive. We are left waiting months and months to heal completely.

Some days I'm 90%- AND some 98%. Lately, I'm a 90%. Not quite as good as a 98%. But, I know it's because I'm ACTUALLY getting better, that I feel WORSE.

One day I'll wake up and forget that it's there totally. My aunt had this problem for a while, too. She had it about 3 times withing 5 years, but now she is GREAT. Doesn't bother her anymore.

Scotsman- you are real early into this. (I know you don't want to hear that because I'm sure it feels like you been suffering forever.) But, I'm guessing real soon you are going to feel much better.

Take care all of my friends,


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