Hi Subs,

Not been on here for a while, had a lot of 100% days interspersed with the odd crappy one!! This "end" bit sure does drag on, I'm wondering if I'm expecting too much.

I'm at nearly 11 months now and am very grateful for my progress but I sometimes wonder "is this as good as it's gonna get?". I sooooooo want to be 100% all the time.

My remaining symptoms are: jiggly/jumpy vision when I stare too long at something, floating sensations lasting a couple of seconds, still sometimes feel heavy headed (not dizzy) in shops or enclosed spaces. I manage work just fine and driving or cleaning the house are ok.

Do you recall how you felt at 11 months in? Mine was VN, I know yours was BPPV but I'm assuming we recover in similar ways. Do you have any advice that may help "kick" these lingering symptoms???

Thanks and hope you are well.


Lizzy x

Hey Lizzy

Good stuff---at 11 months---I'm prob not a good example

---since---I had a preexisting vision problem---that I forgot about---that was holding me up at 11/12 month

---once that was found(Univ of Penn) and corrected---proceeded to fully compensate---and from that point on---was just like yours

---think---VRT's are good---with an occasional MEP---if your up to it

---from here on out---I would not over do it

cause---as you go about your normal daily activity---you will/should make most of the moves---required to "fully compensate"----there will be occasional blips---for those moves you have not made

---but at the 11th month:

..." a lot of 100% days interspersed with the odd crappy one!!"...

Wow---great stuff--Lizzy---looks like your "bod" is licking it---big time!!!!!!

....."Thanks and hope you are well.".....

Thanks for asking-----yep---doing well---100% a 100% of the time---still doing VRT's/Exercises/occasional MEP---but think now---it is more---because I am so used to doing that stuff---having done it for so long---then anything else.

:cool:

Thanks Subs,

I always feel better after reading your replies.

Lizzy x

"I always feel better after reading your replies. "

Don't we ALL!! Amen for Subs.

Great to hear you're doing so well Lizzy. I'm at month 21, but remember things starting to feel like you might not feel like hell for the rest of your life at about the point you're at now. I'm basicaly 100% like Subs, but still have blips where I feel some of the things you describe. They start to get shorter and shorter as you continue to compensate. The only rub is that at this point (almost 2 years in) you really hate the blips because, as you mentioned, you really wonder if it's as good as it's going to get. Then when compared with 1-1/2 years ago I have to look back, remember, and thank god I'm as good as I am today!!!!

Keep up the good work.
Cheers,
T

Hello Lizzy, Subs and T,
I happy to hear you are all having 100% days. I have a few questions for you veterans!
Diagnosed with VN 18 mos ago. I have had progressively good days, weeks, and months and then regress for weeks at a time. I still have intermittent ear fullness that feels like blocked eustachian tubes, very sensative hearing and now some visual disturbances along with intermittent dizzies. 2 ENT'S say definitely NOT Meniere's but family dr is insisting I continue to get evaluations from Neurologist and Allergist.
I guess I am trying desperately to "match" up my symptoms with others that have had VN. I am lazy about my exercises and now wonder if I am doing the right ones. I lost my print out from the therapist!
Lizzy, you went to U of Penn. I live 3 hrs from there and my Neurologist in my HMO said she would refer me if I wanted a second opinion. What tests did they perform on you? I have had an ENG, audiology test ,etc. ENG showed 55% loss of function in right ear. Did any of you have any permanent loss of balance function, too?
The last 2 months have been terrible but I am under a lot of stress with family problems. Now, I am driving, carefully. Live in the mountains of NE PA and I am about 1 hr. from the grocery store!
Do you all recover gradually or did you just wake up one morning feeling great? How about anxiety/panic attacks with this and if so, did they, too, go away when you improved. Anyone resort to antidepressants to help the process?
I am still taking Antivert and Ativan when needed. I know these medications can prolong the recovery but sometimes I HAVE to take them to get through a tough drive or event that pushes me over my tolerance.
Looking forward to any input to can offer. I am so delighted to hear that there is light at the end. I am been reading that this VN eventually burns it's self out with time.
Hoping I am one of the lucky ones.

Hi Stitcher,

I dont live in the U.S, I'm from the sunny UK (it has rained here continuously for the last week to ten days!!!).

I was referred to ENT last November with dizziness and nausea - my GP had diagnosed Labyrinthitis and said it would go in a couple of months, it didnt. After various tests, can't remember the names of them all and hearing tests, the ENT said VN as my hearing was still good. His actual words were "I wish my hearing was as good as yours" - not that it made me feel any better at the time. He sent me away with a sheet of Cawthorne Cooksey exercises and told me keep active, do these and it will get better...eventually. Strangely he also told me to take Stemetil which I did until I found these Boards in Jan 04 and realised I was probably not helping myself, so I stopped from that day and have taken nothing since. Had MRI which was normal. In the meantime I continued to work (although some days I shouldnt have been there) and drive (which has always been fine for me). I have two under 7's so I HAD to keep going, I had no choice, however crap I felt. Soon I started to feel better,not all at once but very slowly and gradually and like many people on here say, it was very up and down (and still can be). Very slowly I started doing things I used to, I started to go swimming once or twice a week, started to walk my dog, took up a part-time degree course and decided I was NOT going to let this blimmin thing destroy me. I have too much I want to do with my life.

So, as at today, I still have rotten days but the good ones far outweigh them and the turning point for me was that I was no longer thinking about "it" constantly. I still get some visual symptoms but I think these are the last to go and if I catch a virus from my kids, I get a couple of dizzier days.

Hope this helps and hang in there.


Lizzy x

Sorry, forgot to say - I didnt try the anti-depressants, no. But, hey everyone's different so you must do what you feel is right for you.

Lizzy x

Hi stitcher

..."family dr is insisting I continue to get evaluations from Neurologist and Allergist"...

Yep---good idea----this stuff is exceeding hard to sort out.

..."trying desperately to "match" up my symptoms with others that have had VN."....

That may not be entirely possible---since no two people are exactly alike---in their response to an inner ear injury(vestibular)---some who have this injury will get dizzy---on the slightest movement---some could ride a "roller coaster" all day and not get dizzy---while riding it---step off of it--and fall down dizzy---there are similarities---but no two people are exactly alike.



...."Lizzy, you went to U of Penn".....

I was the one who referred to the Univ of Penn---Balance Center---go here for Univ of Penn Balance Center Web Site:

http://pennhealth.com/hup/balance/


....." Diagnosed with VN 18 mos ago".....

Couple of things on VN compiled from the NIH/Northwestern/Univ of Penn/ UCLA School of Medicine discussions on VN(Lab/BPPV..etc):


..."....Benign paroxysmal positional vertigo (originating from the posterior semicircular canal) often develops as a sequela even if the patient has no remaining function in the horizontal or anterior semicircular canal. Selective inflammation of the superior division of the vestibular nerve or anatomical differences in the bony canals of the two divisions--- might explain this relative vulnerability".......

It would not be unusual---for that to happen(BPPV)---as a result of the VN---which might explain---the return--of the dizziness---but that is a guess.

..."inner ear injuries of peripheral origin are commonly called vestibular neuritis, although other terms such as -----"vestibular neuronitis," "labyrinthitis," "neurolabyrinthitis," and "unilateral vestibulopathy of unknown cause" have also been used."....

So---depending on the Doc---and his/her experience---determines---what it is called---in some cases---since the terms are used interchangeability.

..."The condition(VN,Lab...etc) is thought to result from a selective inflammation of the vestibular nerve, presumably of viral origin. The facts that the disorder often has a viral prodrome, that it occurs in epidemics, that it may affect several members of the same family, and that it occurs more commonly in spring and early summer all support a viral cause."........

It is a extremely complex problem for most Doc's to sort out---so a lot of people end up seeing a lot of different Doc's---none of which---really see enough people---to be expert---in this---and the truth---is are not that interested---in---dizziness---since it takes so long and is so hard to pin down--is "benign"---in 99.xx% of the cases---and it takes a lot of their time---and in 99.xx% of the cases it is what they call---"self correcting"---which means eventually you can get over it on your own.

---so if your lucky---and understand---what can be done and where---you go to a Center of Excellence Balance Center---where they are set up to deal with it---with a team of specialists/tests focused on "only" vestibular/brain injuries---such as---Univ of Penn, Northwestern, John Hopkins, etc... and/or in the UK Univ/Hosp--London where Prof/Doc Luxton and her team are located(can not remember the name)

If you can swing it---you might consider---contacting the Univ of Penn Balance Center---at their 800 number posted on their web site(above)

Good Luck

:cool:

Thanks so much, Subs. I think I will persue this avenue since U of Penn is so close to me. (My husband graduated from their veterinary school)

Interesting you should mention the epidemic viral issue. My neighbor got this 2 weeks after I did last year but recovered within 6 weeks. She must take Zyrtec daily to avoid additional symptoms. Also, my husband and son had the tummy flu just prior to me getting dizzy. I did not get it but I had a series of several very painful sores in my mouth. Whenever the dizzies came back in full force, the mouth sores returned also. Now to fingure a way to get this virus out of my system!

Today was a good day, thankfully. The wether has cleared and it is cool and dry.

The information you included was terrific. Thanks again.
Linda :wave: