Help... Rough Patch getting Rougher - Inner Ear Disorders Message Board

Miza03 · 10-06-2003, 11:39 AM

Hi All'
I need some encouragement. I am about at my wits ends. I am going through a major rough patch and I am trying to convince myself that this too will get better. This time the bad patches seem to be getting much worse. For the past month or so, I have been feeling about 50-50. Half good, half bad. A few hour bad period would be followed by a few hour good period. The bad periods were bad but tolerable. Now since last Thursday, the bad have gotten significantly worse. I feel like I am on a ride and I want off. I did not do anything different to provoke this. No long drives or over exertions. I just feel awful. If I keep moving, it is better. If I sit still forget it. Just trying to type is a major task. The words are all jumbled. I feel like I have regressed a few months in my progress, sort of like I felt at month 2 or 3. It is now month seven. I have a lot of tension in my neck and it is causing severe headaches at the back of my head, almost like someone is pulling my hair.
I am starting to get very depressed. I want my life back. I was starting to feel like this was coming to an end only to have that taken away from me. I am so upset that I am shaking on the inside and out. No-one around me understands. I think they think I am making it up.
Any ideas of how I can get through this or why this may be happening.
I appreciate all your help
Mia

LarLarz · 10-06-2003, 12:28 PM

Oh no. I can totally understand where you are coming from! Unless our arms suddenly fell off, I don't think anyone would truly understand our pain. They can't "see" it. So I often wonder if they know just how awful I feel sometimes. I am having a good day today, but I had a horrible one yesterday. Headaches were terrible yesterday. When I woke up this morning the first thing I felt was the tingling in the top of my head. The only thing I feel today is the weight on the top of my head. My ear feels alot better though. I started taking Centrum 1 a days one week ago and I also started using Flonase once a day. I also quit smoking yesterday afternoon to see if that helps at all. That could be why I am even more spaced out today!!! The only time I remember not being spaced out was when I took the Claritin-D 24 hour. I felt like I could think clear, but at the same time I felt like I had drank a 24 hour dose of super duper coffee. It was alittle too strong and I could not sleep at night. Anyways, the weight on my head makes me feel very unbalanced. When I walk is when it is the worse for me. I feel like...I can't explain it. Like I am walking on moving water or on a trampoline or something. I know that it is awful. I could not believe when I first came here and found that so many people were going through the same thing as me in some way or another. I know our situations are not exactly the same...but don't give up hope. That is the same for both of us. I will not give up bc I remember all too clearly what I used to feel like and I am determined to feel that way again. No matter how long it takes me. If you want to talk, email me at larz278@yahoo.com. It will get better =) That's all we have to go on!

hbep · 10-07-2003, 04:05 AM

Hi Miza,

Hang in there, I am at month 13 - although due to my late diagnosis only started VRT 5 weeks ago. I am also going through a period of what seems like complete regression - for me this has coincided with starting a new VRT exercise. I have challenged my brain and it doesn't like it. For some reason you have decompensated a bit - take heart - this almost certainly means your brain is grappling with a particularly difficult bit of this head monster. Once it has worked out what's going on, you will compensate again and move on. The awful fact of it is, until you get better, you need to keep getting really dizzy, so your brain has some 'material' to work with, so you can push through to the other side.

I can't remember, are you doing VRT?

I am as despondent as you are, but LarLarz is right, we have to be absolutely determined to beat this awful rubbish - push on, keep active, don't give up. I have a new policy of soldiering on, going out, keeping at the exercise I'm doing however rough I feel, as I honestly think it's the only hope of getting rid of this nonsense. Try not to be scared by what's happening. You will get better Miza, the fact that you'd compensated so well for a while is a good sign.

take care,

hbep.

Subs30 · 10-07-2003, 04:59 AM

Mia

Yep---good advise---hard to do---but good advise!!

Hbep--

If I remember correctly you were off to get your eyes check---to make sure that was not holding you back---did that happen???

Went and had my glasses & eyes checked---after the Nuero-oto on 9 Sep said---it was slowing down compensation---and bingo!!--left eye was ok with current lens prescription---but right eye had changed---and need a new prescription for that lens---and of course---it is the right vestibular system---that has/had the "VN" & BPPV

---boy---this problem has so many twists and turns---just when you think--you nailed it---it something else pops up---darn thing is like an "oil slick" seeps out and spreads everywhere.

But all of that notwithstanding---still maintaining 100%---Knock on wood!!

[This message has been edited by Subs30 (edited 10-07-2003).]

Miza03 · 10-07-2003, 05:26 AM

Hi All
Thanks for the cheering up session. I am just so depressed. I am trying to be positive but I am not very good at it.

LarLarz - I tried to email you but I got an error message that said this user does not have a yahoo account. Any clues why it won't work?

Hbep - You have been such a trooper. Thirteen month is a long time to deal with anything. I do admire your perseverence.

Yes, I am doing VRT. Mostly just the Cawthorne Exercises. The problem is.....I forget to do them when I am feeling pretty good. I end up doing other things which I guess is good as well.. The other night I helped my husband wash his truck. Maybe that made me feel whacked out.

Subs - Thanks for the insights. A while back I mentioned that I had transition lenses. The ones that change color in the different lighting. I decided to get a back up pair of glasses that do not have the transition lenses. Big mistake. Apparently my eyes have adjusted to the transition thing and can no longer handle clear glass lenses. If I try to wear the new glasses all the time my eyes really hurt.

Here is another question for all of you.... I feel the best when I am outside on a nice day. I could be feeling awful inside the house go outside and bam I feel instantly better. Unfortunately I can't spend my life outdoors. Any clues why this happens. My guess is that it is because the range of vision is so much broader.

Have a great day and thanks again

Mia