I've heard a lot of you talk about this before. What do you mean by Decompensation? Do you get a period were you feel totally 100% fine and then it hits you again. Or do you mean that you just in general feel not so dizzy but still have all the other symptoms; i.e. brain fog, headache, etc.
I know I've improved some since January in that some of the symptoms have either gone away (and let me tell you there were a lot of different symptoms), or some of them aren't as severe like my constant headache. But I've never had a period of what most of you talk about as decompensation. Did I just not hit that period yet or for some does the symptoms just start to fade until it all goes totally away.
Also, is there anyone who experiences a dizzy-like feeling but never initially had an episode of severe vertigo?
When people say decompensation they are talking about feeling better and then getting the symptoms back. That was the case for me. I had this four years ago, and recovered fully. Then after a bad case of bronchitis it came back. I didn't catch another virus, I already have some damage in my inner ear and illness caused me to decompensate. I'm not sure why the flu would cause that, but I guess it does. When you decompensate, the symptoms usually don't last as long, because you're brain "knows" how to compensate as it has done it before.
Not all colds and such cause decompensation. I have been sick in the last four years and not had ear problems. Why this time I did, I don't know. But I'm feeling better now, so that makes me happy. I do have my MRI this Saturday, and the lady said it would take 20 minutes. I'm glad to hear it won't be longer, and as much as I know things will be fine, I'm still a little nervous.
On a personal note....
I just decided to take a break from my boyfriend and will be moving some stuff out to stay with my mom again. He is such a wonderful person and told me he loves me and if I need time away then that's okay. I know I love him, and I doubt this time away will last long. At least I hope not.
Scott has posted on decompensation/compensation a number of times, so have a search on the board. Basically its when you do something that your body can't cope with and its unable to deal with it. Usually when I have decompensation I feel worse with the dizzyness but sometimes its so bad that I have vertigo attacks. Eg one of the worst for me until my glasses thing was when I first got better about 3.5 months after this all started, I was driving to work, and feeling great as I thought I was over this (lol) and singing along to my cd. Well I think my brain just couldn't handle it and i had a massive vertigo attack. It was doing something different and my brain hadn't worked out how to handle all the different inputs - so it didn't. Usually the setbacks are small and hardly noticeable but sometimes they are bigger. As you get more used to this you will be able to tell what caused the latest setbacks.
Colds and flu aso cause decompensation - I think because they bung up the eustachion tubes and ear, and also because your body is coping with something else so its resources are used up fighting the virus.
Hope that helps
Joy, Im having my MRI on Thursday so I will let you know how it is. Ive been told its only 20 mins too, it can't be that bad. I know what you mean about being nervous though.
It sounds like your boyfriend is great, there aren't a lot of men i think who would be so good about time away, he sounds very understanding.
Hope you are both doing well
Thanks Tesss and Joy. I will do a search. I was just mainly wondering if before someone has a set-back if they were feeling 100%. It seems like from talking to Joy, you didn't have any symptoms at all between episodes. I'll have to do a search on this too.
Here to hoping for sunnier days,
P.S. - Glad to here your bf was understanding. That is a good sign. I'll be routing for you to work this all out real soon. Take care.
No you can be at 40% and still have a setback that takes you to 30% for a bit. Ive never been 100%, I would say that at best I have been able to cope well with a 'normal' (normal now, not past normal) day. But I have been good and gone badly downhill due to decompensation, and I have also felt awful and got worse from decompensation. Thats how I understand it.
Hope you are well.
Tess, glad to hear you are having an MRI. Let us know about the results. I am sure it will be fine, if it was something terrible, you would have gotten worse and worse! I understand worry though cause just with my small setback, I was thinking...what if it is something they missed? Isn't that stupid after all of this time? I still get nervous though! Have a good day and hope you (and all of us) feel better!!
Thanks for the messages, its good to come on here and find some friendly replies! Dizzy, I am more concerned about having the MRI than the results, being slightly claustrophobic!! Im sure it will be fine though and will be good to get out of the way. I have balance tests next Tuesday and a bit concerned that it will make me feel bad, but hopefully it will diagnose some damage.
I wasn't feeling too bad for most of today. A bit swimmy at times but better than recently, and I had a terrible night sleep so feel shattered and I expected the dizzyness to be terrible because of that so better than I expected. Ive been practising positive thought, I meditated on 'My head is getting better and better and better and better' and Ive felt better since. Have to find time to ft the meditation in though!
Gloria, I saw that you got some vrt exercises today, I would be interested to hear what it is you have to do. do you feel you have had some compensation and decompensation??
Hope you are all doing good today. best wishes
I don't really know about the compensation and decompensation thing. I feel pretty much awful every day. Some days the headaches are worst and some days the dizziness is worse. My ears are always full and my head always feel cloudy. Something is not always right with my eye and sometimes my eyes don't bother me as much as other times. I do know I am better than when this all started but not well enough to live fully each day too. So who knows?
I read about your driving problems.....that is weird because I feel much better when I'm driving and sometimes just go out for a drive with my son to feel better. I guess this crap really does effect us all differently. I do think my eyes are worst when I have cried a lot so maybe the anixety is what makes us worse.
The exercises are things like this
Following your finger back and forth and up and down.
Stooping and picking things up off the floor with eyes open and then closed.
Sitting and then standing with eyes open and closed.
Throw a ball from hand to hand above eye level and then under your knees.
Walking across the room with eyes open and then closed.
Stand on one foot with eyes open.
Change from sitting to standing and turn around in between.
Do any games involving stooping or stretching and aiming, such as bowling, shuffleboard, etc.
You do these slow and then quicker for 20 times. I am suppose to do them 2 times a day. I don't really have any balance issues but it is suppose to help my eyes because they showed that they were moving faster than my brain/ears were compensating. We'll see if they work. I'm desparate and will try anything. I also read that walking and reading signs while walking helps too.
Hope you have a great day.
Last edited by gloria2936; 07-27-2005 at 07:16 AM.
Im going to start doing these, Ive been following my finger and moving my eyes but most of these are not ones Ive done, so will be good to start doing them. I haven't been for VRT yet, Im waiting for the appt to come through, although it might take a while - NHS in UK unfortunately. So Im trying to get on with some anyway rather than wait for months to start anything.
Reading your other post, I must say that you do sound different in general to how I am symptom wise, but I have read of lots of people on here not having vertigo etc - in fact when I started posting on here, I seemed to be almost the only person with vertigo. It does sound like you are getting better though, the dizzyness is lessoning, if anything was getting worse the dizzyness would be bad I am sure. I have read on the board that the brain uses so much energy coping with dizzyness that other symptoms like brain fog etc are almost side effects of the brain working so hard. I used to get brain fog but it seems to have gone now.
Anyway thanks and hope you are having a good day. By the way just wondering where you are - are you in the US?
ps Gloria, just read ASLme's recent posts on 'Psychological aspects of vestibular disease' and she has (some) similar symptoms to you, and she is 99% recovered. hope that gives you a little hope
I know about ASLme. I just love her and Joy. I'm so jealous at times. They both have pretty much recovered from this. My symptoms do sound similar to ASLme's and that gives me such hope. I don't like that fact that my eyes came up abnormal in the rotary chair test however. I'd rather it all be normal, but then who wouldn't.
I thought most people have vertigo symptoms versus how I feel. Maybe we should start a post to see what everyone's dizziness is like? I get tired of reading about all this and sometimes think I confuse myself more.
I did the exercises this morning,but to be honest I didn't feel much different except now about 2 hours later, I feel a little spacy. Maybe they provoked that. I really need to go grocery shopping but don't feel like dealing with it today like this. I should have went yesterday with the migraine when the dizziness was less.
What is NHS? I'm lucky in that I don't need referrals to go to specialist. I just choose someone that participates in my plan and then go. I guess I am pretty fortunate when it comes to that. I am in the US. I live in Pittsburgh, Pennsylvania, but would really like to live somewhere a little warmer all year around. I worked for a company prior to my son as a Human Resorces Manager. We had a division in the UK, but since the benefits are different than the US, I never administrated them. Coincidently, my father was from England. I'm not sure where exactly. I'll have to ask my mom (my father passed away).
I hope the exercises help. At least try them, they can't hurt you, just may make your dizziness a little worse and supposedy that means the brain is working.
Last edited by gloria2936; 07-27-2005 at 10:02 AM.