I can understand your statement about forgetting what is "normal"....
Really, I kid you not...the exercises will help you. I would be happy to give you all the ones I do...
You will heal...just different times for everyone.
Thanks Charlotte i would be most happy if you would, i am going to give it my best shot with the visual thing.
Trouble is when i get back to "normal" will probably wonder what the heck
Theres a guy on here named Subs and he used the same program, and he recovered fully in 13/14 months and has been for 4.5 years. He said that his vison helped with his balance and that his vision was the last thing he needed to compensate......I am doing the same exercises and yes they do work!!! Also subs walked during the day and night...so have I and it is helping alot!!!!! Move around as much as you can!!!!!!!!! I am almost there, close ot the end....I have had days lately where I had just very little symptoms and even forgot that I had an inner ear disorder. The last two days would consider to be bad days, but only dropped like 5% from what I was...Sometimes going to the doctor for this problem doesnt do any good...listen to the folks on the boards and do the exercises!!!!!!!!!!!!!!!!
ck
ck
Hi ck
When i first came to this board i read a lot of posts from Subs and i have to say he is an inspiration and full credit to the guy for returning to help others after being well for 4 years.
I walk every night as well as this is the only time when my balance is a bit unsteady.
Am more or less given up on local Docs now, i just want a dx ....
Will certainly be doing the exercises and fingers crossed..
Rob.
I went back and read your first post...you said that u have vertigo when you tilt your head...that can be BPPV...get the Epley Manuver done...I have and it got rid of mine!!! That can be hinder compensation...once the cystals moved in to the correct canal, everything started improving...I had mine done by a chiropractor...see if there are any intown that can do that...also, you can do it yourself it is very easy...if you search the internet for BPPV treatments they will explain the manuver. need to get rid of it before you compensation will start!!!! Dont do the brandoff exercises.....
Vivs...that is exactly how it happens. You wake up in the middle of the night and think "am I crazy...I actually am not spinning as much/or woozy as much"...then you get up in the morning and the spins are back a bit less but still there...then as the days progress it gets better.
I felt 85% chistmas day...head foggy, pressure, ear fullness...
Today..97%...still get dizzy when I do the VRT's (really hard ones now...) but I got up, vacumed the whole house...did the laundry, fed the baby...and now have a moment to post. 2 months ago...I would have done nothing but feed and take care of the baby.
Charlotte 67, Yeah thats how its been for me, up and down. Sometimes I feel good and I can hardly notice the dizzies, but then others they are more intense. I also feel brain fog, I don't feel less sharp or keen, just like every movement is a bit off and surreal. It is great to have people on this board that understand. I have had constant tinnitus in my left ear since this all started. It very mild, can really only hear it when everything is quiet. I am taking Lipo-Flavanoids given by my ENT, I think they are helping a bit. THey are just the B vitamins and flavanoids, which I believe is extracted from Ginko-biloba.
How are you getting your percentages or what "norm" are you going by? Are you just calculating the % by decreasing symptoms? Sometimes I feel less dizzy, but more woozy. By woozy I mean the feeling you get when you have donated a lot of blood to the Red Cross and you feel mild nausea and lightheaded.
We'll recover soon.
Vivs
Hi Trebor, sorry to hear you are suffering like this. I know only too well how bad the nhs is. Iv had problems with my ear for over a year and had to go private to speed things up. Iv had so many ear infections Iv lost count and along with these have developed tinnitus and balance problems. After seeing a specialist at a private hospital I was put on his short list (through the nhs) for a grommet insertion which I got within a couple of months, whereas on the nhs I would still be waiting to see someone. Im also waiting for an mri scan and again although Iv jumped the queue for this a bit there is still a waiting time so I might need to go private for this. Its not right that I should go in front of someone else because I can afford to pay to see the specialist privately but when your desperate you will try anything. All Im saying is if you feel at the end of your tether why dont you pay for a consultation with a specialist and then hopefully he will speed the process up for you to see him at the nhs hospital. Since having the grommet inserted the tinnitus has got a lot louder and Im hoping that once the ear returns to normal the noise will diminish. If you want to read my story so far if you type in eustachian tube dysfunction it should bring it up for you. Im sorry I cant give you any advice on the tinnitus, as for me too this is the worst aspect of my illness. I wake in the morning and know from the sound if its going to be a good or bad day. I seem to get a few good days then a few bad. Drinking water seems to help the noise as does going without salt, caffeine and artificial sweetners. Hope you manage to sort things out soon. Andrea
Jaxzilla, I have had this about 3.5 months. First started with off feeling and ear fullness and mild tinnitus. Next day had true vertigo spin about 5-7 sec. Then swaying, rocking, falling, tilting, shifting, rotating sensations thereafter.
In the begining I could not look or move head in any direction w/o getting extremely dizzy. Its better now, but is still constantly there.
Have had ENG, MRI, Several Blood tests, Hearing test all normal. I have moments when I feel better and others that are yucky. My insurance approved 12 sessions of VRT, I am hoping this makes a big difference in my recovery, so I am go back to teaching 2nd grade.
Vivs
The reason why is because theoretically when you do those exercises the crystals keep hitting your nerve and overtime it is suppose to desensitized it. I did those exercises and it caused me more problems and never helped me. I would get the Epley manuver done. I have BPPV very BAD too!!!!!
Dr's also say that the crystals will dissolve on their own but it can takes weeks to years...everyone is different!
Jaxzilla, The ENT and ENG tester ruled out BPPV , because I did not get spinning vertigo or nystagmus with the positional test. I didn't even get any dizzier with the positional test. I am pretty much dizzy all the time, but I do get dizzier when I lay or try to sleep on my left side. I wonder if there is such a thing as mild BPPV. BUt I did not have a head trauma, cold, flu, just a mild allergy when I got this. My dx was first BPPV, Labs, then VN. But now I am wondering if you can have a mild case of BPPV on top of the VN. I will ask my VRT therapist to do the Epley, it couldn't hurt right?
It is suprising to see so many young adults on here. I just turned 27.
I will try some of the VRT you and CHAR67 exchanged. You two must be pretty advanced because those sound like they bring on major dizzies. fun! Gotta keep a sense of humor so I don't go nuts!
Vivs
Yours is an example of how exercise and activity helps no matter what, cause your rate or recovery is really good, aside the visual trouble wich, as I believe is one of the last "fine tunings" your brain make on the vestibular system, to compensate and anndjust to it's new condition.
Sorry to hear of the slow response of the medical service, here in Mexico is quite similar... unless you have tons and tons ob bucks to spend on studies, so sometimes months past from where you feel bad to where you actually get a doc's appointment, I can't blame about the fees though, less than 10 bucks for a neurotologyst appoinment.. buth months can pass between them...
But rest assured that, no matter what final Dx you finally get, you're doing what you should regarding this vestibular stuff, and unless something rare and unprobable shows up, you're pretty much already int treatment right now, meaning that there is not much to add, compensation realated, to what you're doing right now, the only thing better to that is a tailor made VRT program wich very few people in the world actually gets.
Regarding your visual trouble it's quite the same with me, bouncy or oscillating visual field, some see trhough glasses stuff and all,VOR exercises do work, playing tennis or something similar helps a lot too, and keep on your workouts and stuff, because from my own experience I've discovered that no symptom is isolated, meaning that this visual stuff is the result of an uncompensated vestibular system in some extent, and to some people it seems to be the last thing to leave, but no to all.
My point here is that you(and we all) need to keep compensating for all parts of the system(ie excercise, walking, tennis, window shoping, etc), and not just focus on something, even as you should add this VOR exercisses to your regular stuff, to easew on the visual trouble.
Since you're not on allergies, migraine ans stuff you'll be fine soon, I'm sure of it, keep it up, and best of luck
Hi Trebor, sorry to hear you are suffering like this. I know only too well how bad the nhs is. Iv had problems with my ear for over a year and had to go private to speed things up. Iv had so many ear infections Iv lost count and along with these have developed tinnitus and balance problems. After seeing a specialist at a private hospital I was put on his short list (through the nhs) for a grommet insertion which I got within a couple of months, whereas on the nhs I would still be waiting to see someone. Im also waiting for an mri scan and again although Iv jumped the queue for this a bit there is still a waiting time so I might need to go private for this. Its not right that I should go in front of someone else because I can afford to pay to see the specialist privately but when your desperate you will try anything. All Im saying is if you feel at the end of your tether why dont you pay for a consultation with a specialist and then hopefully he will speed the process up for you to see him at the nhs hospital. Since having the grommet inserted the tinnitus has got a lot louder and Im hoping that once the ear returns to normal the noise will diminish. If you want to read my story so far if you type in eustachian tube dysfunction it should bring it up for you. Im sorry I cant give you any advice on the tinnitus, as for me too this is the worst aspect of my illness. I wake in the morning and know from the sound if its going to be a good or bad day. I seem to get a few good days then a few bad. Drinking water seems to help the noise as does going without salt, caffeine and artificial sweetners. Hope you manage to sort things out soon. Andrea
Hi Andrea
Sorry to hear about your tinnitus, after 9 months mine is a lot better now, its still there but i don't hear it really in an environment with noise, only in the quiet, if i look for it i hear it clear enough though, funnily enough if i look up, stretch the tendons in my neck it gets louder.
I keep my fingers crossed that the grommet works for you.
I actually have paid to see one ent and one eye consultant to get where i am now, knocked a few months off the waiting but the tests are on the N.H.S. so had to join the long cue.
Take care
Rob.
Yours is an example of how exercise and activity helps no matter what, cause your rate or recovery is really good, aside the visual trouble wich, as I believe is one of the last "fine tunings" your brain make on the vestibular system, to compensate and anndjust to it's new condition.
Sorry to hear of the slow response of the medical service, here in Mexico is quite similar... unless you have tons and tons ob bucks to spend on studies, so sometimes months past from where you feel bad to where you actually get a doc's appointment, I can't blame about the fees though, less than 10 bucks for a neurotologyst appoinment.. buth months can pass between them...
But rest assured that, no matter what final Dx you finally get, you're doing what you should regarding this vestibular stuff, and unless something rare and unprobable shows up, you're pretty much already int treatment right now, meaning that there is not much to add, compensation realated, to what you're doing right now, the only thing better to that is a tailor made VRT program wich very few people in the world actually gets.
Regarding your visual trouble it's quite the same with me, bouncy or oscillating visual field, some see trhough glasses stuff and all,VOR exercises do work, playing tennis or something similar helps a lot too, and keep on your workouts and stuff, because from my own experience I've discovered that no symptom is isolated, meaning that this visual stuff is the result of an uncompensated vestibular system in some extent, and to some people it seems to be the last thing to leave, but no to all.
My point here is that you(and we all) need to keep compensating for all parts of the system(ie excercise, walking, tennis, window shoping, etc), and not just focus on something, even as you should add this VOR exercisses to your regular stuff, to easew on the visual trouble.
Since you're not on allergies, migraine ans stuff you'll be fine soon, I'm sure of it, keep it up, and best of luck
Hi Stargrave.
Thanks for your encouraging response, i have been an exercise junkie most of my life so it was no real problem to keep it up when whatever i finally get dx with struck me.
If i could have afforded the tests and an m.r.i. scan i would certainly have paid because i think the 9 month wait, because of the anxiety, has nearly caused as much harm as the probable ear problem.
My main problems now are the visuals, the distorted lines and text, momentary visual vertigo when head tilting ect. The bouncy vision is not so bad now, only notice it when running.
Anyway, i will certainly keep up the exercises as well as the eye ones and i am walking at night too now as i still feel a bit unstable in the dark compared to daylight.
Thanks for your comment and i hope you are getting well too.
Rob.
I went back and read your first post...you said that u have vertigo when you tilt your head...that can be BPPV...get the Epley Manuver done...I have and it got rid of mine!!! That can be hinder compensation...once the cystals moved in to the correct canal, everything started improving...I had mine done by a chiropractor...see if there are any intown that can do that...also, you can do it yourself it is very easy...if you search the internet for BPPV treatments they will explain the manuver. need to get rid of it before you compensation will start!!!! Dont do the brandoff exercises.....
ck
Hi C.K
I was wondering about BPPV, but can it cause just a momentary vertigo? will give eply a try anyway.
Thanks
Rob.
It can cause momentary vertigo....then its probably only mild...Is it only certain head position???? When you run, you should move your head and eyes around...thats good VRT too. Just think that everything you do, think compensation, compensation.........
My main problems now are the visuals, the distorted lines and text, momentary visual vertigo when head tilting ect. The bouncy vision is not so bad now, only notice it when running.
Trebor I think you're even more recovered than I thought. From what I've noticed, sometimes some "strange motion" was already there before this junk but we didn't care at all.
I mean some of the visual oddities and dizzy feeelings, like when you get on a ride or turn around like crazy in circles, like when you were a kid, are normal even for a non vestibular affected person, but after having this we become more aware of motion in our visual field, paying extra attention to everything waiting for the next "attack".
Try to stay low on your anxiety, and share with us your final dx to see what they give you after so much time.
Believe me that it's the same here with the money, not by choice but by condition I also needed to wait a lot between studies and appoinments, just because all this is way out of my budget on a private hospital or institution, but hagn in there you really really look on the right track, keep it up.
I know only too well how bad the nhs is. Iv had problems with my ear for over a year and had to go private to speed things up. Iv had so many ear infections Iv lost count and along with these have developed tinnitus and balance problems. After seeing a specialist at a private hospital I was put on his short list (through the nhs) for a grommet insertion which I got within a couple of months, whereas on the nhs I would still be waiting to see someone. Im also waiting for an mri scan and again although Iv jumped the queue for this a bit there is still a waiting time so I might need to go private for this. Its not right that I should go in front of someone else because I can afford to pay to see the specialist privately but when your desperate you will try anything. All Im saying is if you feel at the end of your tether why dont you pay for a consultation with a specialist and then hopefully he will speed the process up for you to see him at the nhs hospital. Since having the grommet inserted the tinnitus has got a lot louder and Im hoping that once the ear returns to normal the noise will diminish.
If you want to read my story so far if you type in eustachian tube dysfunction it should bring it up for you. Im sorry I cant give you any advice on the tinnitus, as for me too this is the worst aspect of my illness. I wake in the morning and know from the sound if its going to be a good or bad day. I seem to get a few good days then a few bad. Drinking water seems to help the noise as does going without salt, caffeine and artificial sweetners. Hope you manage to sort things out soon. Andrea 
