Ahhhhhhhhhhhhh - This is so HARD to live with - Inner Ear Disorders Message Board

willsmom · 10-04-2003, 07:38 AM

Hi ya all

I need to vent - I just feel like I am living on a roller coaster when the symptoms are mild I really believe that there is gonna be an end to this and can cope and be positive.

Then for no reason bamm its really hirrid again. Take yesturday - got up felt great so visited a frined took my son out etc. Then drove in the car up a bumpy track and when the car stopped I felt like I was still bumpin. So went inside to my friends and the room felt and looked like it was shifting then felt very lightheaded and odd and thought GET ME OUT OF HERE. But I waited and then drove home. But the minute I stood up my balance felt really dodgy - worse than usual. I had to pick up my daughter (I was not keen as I felt soo bad) and as I walked across the yard the building and ground felt very much as if they were unstable and I felt that feelin like I was going to faint. Except its not really a faint its just a very strong horrid bodily reaction to that swinging feelin - its like all of a sudden I was walkin on a trampoline. I tried not to panic and called over to the teacher to please bring my daughter to my car. Sat down in the car and waited for it to pass - it did - as usual. But now and this is the next day my symtoms are really unpleasant - like when I move I feel like the sensations are not matching what I am doing - sorta like if you lean a little it feels alot etc. Also my balance when walking feels gross and that makes me feel spaced and odd. Also I have the feelin of movin even when I am still.

Sorry to go on..............its just so hard at times.

I was sooo scared I called the vrt dept and talked to my chap - he said chill out its just the inner ear! I said are you sure - I don't have a serious illness....I am sure you can relate....lol.

He said its still crystals in my ear causing this problem...........but it feels so bad its hard to believe.

I get these intense spells of trampliline walkin maybe once a week sometimes less.

Any of you guys relate and how are ya coping with it?

Thanks. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Barnsley · 10-04-2003, 10:46 AM

Ah yes, the trampoline walk! Welcome to my life on bad days. You mentioned your doc said it was just the crystals in your ears. Have you had him perform the Epley maneuver to try and displace those crystals so they don't aggravate so much? My problems stem from just two episodes of BPV (six months apart), and at the second episode thank God I was seeing an ENT who knew what the h*** he was doing. He did the Epley, and bam, just like that the vertigo stopped. That was on July 1. Now I'm just dealing with the aftermath of what the BPV did to aggravate my right inner ear, and that's where the trampoline walk comes in. I liken it to the ground rolling underneath me when I walk, and I've just noticed in the past couple weeks that I can actually go for a walk and not feel it, some days not at all and other days just a little bit.

Like many people on this board I have runs of really great days (just finished a two-weeker) and then I have a couple days where I feel it more than before. I just try to ignore it because I know that this too shall pass. I'm in my 10th month as of last week. This just takes time. Tomorrow I'm walking in a 10k race. I'm not going to let this win!!! Keep your chin up. You will get better.

Terri

Emsybobs · 10-04-2003, 02:03 PM

Gosh I admire you Terri for doing the race. Spoke to Ilia also and we discussed this but I also have the trampoline walk. Got it all the time at the mo and it's been like that for a week. I also think its just like the ground is rolling underneath me. Very disconcerting. Next week is my year anniversary of this hell. Praying it ends soon. Thinking of you both xxx

willsmom · 10-04-2003, 04:24 PM

Hey Terri and Emys

What are we like......Yep Terri I could not walk that far in fact a find even a relatively short walk or activity level will make my symptoms very strong. Good Luck!! Hey Emsy you will get over this blip too - just keep ploddin. xxxxx

jtiegs · 10-04-2003, 09:28 PM

Hi Terri,
I haven't corresponded with you yet, but when I saw you mention that you are walking a 10K race, I just wanted to wish you good luck!

I am a runner, and in the worst part of my latest spell, I took 3 months off of running due to lack of balance, fatigue, and general yuckiness(which coincided with an achilles injury anyway, so it wasn't the worse thing in the world to rest).

I don't know what your symtoms are exactly, or your diagnosis, but just wanted to share with you because running has been very important to me, and this illness has caused me to lose a lot of ground. I am not a great runner, but I enjoy it, and it allows me to eat and stay fairly fit. I ran my first marathon in Ft Collins, CO in May. A month later, I started this terrible drawn out drama with the dizziness.

I have recently started running again about a month ago, and it's been going ok. Some days when my symptoms are worse, my head feels tremendous pressure, other days, it seems to actually clear my buzzy head, and then sometimes I just chose not to run since I am too fatigued.

I am just curious what you're experience has been. I wonder if you have found that it helps or makes you feel worse, or both? A doctor told me running can make symptoms worse, but I haven't really experienced that yet. However, I haven't run on a really bad day. BTW, I have been diagnosed with Meniere's disease, but as far as I am concerned, that's still up for debate.

In any case, I didn't mean to launch into a long complaint about myself, but I guess we all kind of like to do that, and that's what we are all here to do! I just wanted to wish you good luck, and see how the exercise is going for you, and how you cope with the symptoms when you are trying to get on with your fitness. Good luck, and let us know how it goes!
Julianne