Well...just got back from my appointment. The general discussion...they both think I should be better by now...that I am taking too long...that I could fall in the hypervestibular group (a group that takes lots longer due to the fact I function at a high vestibular level?). They want me to have an mri...on the safe side (they don't think I have ms, or a tumor....). They said the last visuals can take some time.

Not sure how I feel...bummed that they think I am taking too long.

That said...there is no clear exit interview with patients (or so they said). Some get to where it is manageable...and leave...some say they have some symptoms but feeling better.

I want 100%. I am better...just not 100%. I have some normal moments...but more off moments right now.

Guess I don't know how I feel right now. Thanks for letting me vent.

Well...just got back from my appointment. The general discussion...they both think I should be better by now...that I am taking too long...that I could fall in the hypervestibular group (a group that takes lots longer due to the fact I function at a high vestibular level?). They want me to have an mri...on the safe side (they don't think I have ms, or a tumor....). They said the last visuals can take some time.

Not sure how I feel...bummed that they think I am taking too long.

That said...there is no clear exit interview with patients (or so they said). Some get to where it is manageable...and leave...some say they have some symptoms but feeling better.

I want 100%. I am better...just not 100%. I have some normal moments...but more off moments right now.

Guess I don't know how I feel right now. Thanks for letting me vent.

Hey girl, you know from reading the boards it takes alot longer then they know. Look at Subs, Lizzy, Mollysmum, navelis, you know what to expect. You are doing great! Dont be disappointed please!!!! It seems like these days, it takes somewhat over a year. Keep up the VRTS!!! You will kick this monster in the butt!!

Jax

Thanks Jax...that means so much. I know, and I hear you. I guess I just get upset when I hear the "specialists" saying I am falling into that "slow to recover" group.

Then I ask them how do you know the people who have gone before me were recovered? They say, well some say they feel fine, some say they feel ok...but don't want to continue. So really what do they have to base their findings on?

Nothing seems standardized...nothing black and white. No one seems to know what "well" means...does it mean 100%...does it mean..."not puking"...does it mean 75%, 90%....100%...NO ONE SEEMS TO KNOW>?

I have done everything they have asked of me. I just want this crap to end.

Again, sorry for the rant...just a bit ticked today.:mad:

You're so right!! Its is black and white. And nobody can tell you when u are going to get better with this thing! And tests dont tell much either. You know you are getting well. You are at the point where its most aggravating, cuz there are times you feel great, then all of a sudden you get smacked in the face again. After this hump, the long normal stretches happen!! Dont forget, Im here for you!!!!

Jax

Unfortunately, this inner ear stuff isn't really well known in the community of Physicians. I have an excellent ENT doc who is very well known in our area and my Videonystagmography test was the first he had done. I guess it is more in the specialty of a Nuero-Otologist which are sometimes hard to come by.

So bottom line is there aren't alot of answers for us. I think the best information and answers I have received is from these boards, not from all of the doctors I have seen.

In the meantime, while I wait for this thing to get better (oh how I long to reach 100% and be able to do physical exhertive activities), I am also doing some other stuff that might help move it along. I am going start getting allergy shots (for dust mites and dog hair) that I have heard can cause some inner ear turmoil. I am also going to see a hormone imbalance specialist to see if there is something I can take or do to help me with that whole ball of wax. Hormone imbalance can also cause inner ear problems. Plus I am doing alot of sinus rinsing and avoiding stuff getting into my nose, avoiding wind in the ears, eating better, doing minor exercises, working, etc....

Sorry to hear you are discouraged - I am too. I wish there was some magic pill I could take to make me feel totally normal again. But I have a feeling it's going to take a lot more effort than that - like doing all of those things I mentioned above.

Hi Charlotte,

You know I really wouldn't give that a second thought, by the sounds of things you are doing great - you're steadily improving at around 10 months, right?

ENT's and PT's aren't the super specialists in dizziness. That's a neurotologist. As a result of that they will see far less dizzy patients and even less of the ones who are longer term cases who take a long time to recover. At the neurotology clinic I go to - if you were steadily improving at nine months with VRT - they would think you were on track. In the Dr Roach video he cites 2 yrs recovery - this is often cited as a reasonable length of time. It's just confusing because the less tough to compensate cases can be better in weeks or months and I think ENT's often see a lot of those. A good neurotologist woulnd't think you were a strange case.

Although they often run an MRI as a precaution I really doubt it will show anything. If you really find yourself still dizzy after another while and not improving the more likely scenario would be migraine associated vertigo (migraine that manifests as dizziness not headaches.) I have this and was initially diagnosed with VN. I believe you got this during/after labour? There are big hormonal changes that take place in the body at that time and it can be a trigger for a migrainous condition. Because you are improving with VRT, however, I think this is unlikely. It's just worth knowing about should a lot more months pass and you are still unwell or get worse etc.... Neurotologists tend to know more about it than ENTs.

In short I would just keep doing what you're doing, staying active, staying positive. Don't let their pessimism get you down, as well as they may have cared for you as a patient - and it seems they are doing a good job with the VRT etc... - I think their prognosis comes from inexperience with dizzy patients.

best,

HI Charlotte,

Everyone that has responded here understands what it is like to LIVE with this condition vs the specialists - who only compare your status of recovery against those who have already gotten "well". That comparison is not fair - both to them as practitioners and you as a sufferer trying to get well, as each px IS different.

DON'T LOSE FAITH. Part of the recovery process is accepting where you are (I know - v.v. hard to do!) and pushing yourself to continue. You are doing great. I agree with everything Hbep said - you have been improving and it can take longer than any trained ENT or PT could ever imagine.

MY PT is continually suprised by my battle with this illness and readily admits I know more about my condition than she does:) She DOES recognise the difficulty though and admires anyone that can function through this and fight to have some kind of life.

She encouraged me to see a specialist and that is why I have pushed to see a Neurotologist - I want to know FOR certain if I am dealing with Labs,VN, MAV or a mixture:) I have erased all timelines for my recovery and will battle to get as well as I can....no matter how long it takes.

Hang in there hun. We believe in you!

Hugs,

Tracy

im kinda afrain to go back to my PT because i don't want to hear.......you still have this????? thats just going to make me feel hopeless.

Mitch...MRI's are really costly too...1800.00 here!