It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Inner Ear Disorders Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 09-09-2012, 10:12 AM   #1
Junior Member
(male)
 
Join Date: May 2012
Location: Satellite Beach FL
Posts: 15
VNHOOP HB User
Vestibular Neritis success stories 2

Hello Biteneck, florida31 etc...

I saw our last thread was closed. Rather than lose the contact and continuity of this group, I decided to start a cont'd thread. I will try to contact you all tHrough the website. As for me, the depression was really taking a toll on me and I decided with my doc to start an AD. I think it set my VN recovery back, but I'm not feeling as depressed now which is good. Still having the lightheadedness, driving issues and general head pressure and headaches. I'm going for PT this week to see if I can accelerate my recovery. The recovery can be as much as 18 months and it appears I'm going to use all of it!!! Hope you all are seeing some recovery. Please let us know. VNHOOP.

 
Reply With Quote
Old 09-25-2012, 05:07 PM   #2
Member
(female)
 
Join Date: Aug 2011
Location: Toronto, Ontario
Posts: 56
lovineachday HB Userlovineachday HB Userlovineachday HB Userlovineachday HB User
Re: Vestibular Neritis success stories 2

Hi everyone!
Vestibular disorders are the suckiest thing ever. Only good thing is that once you feel better, you REALLLLLY appreciate it and feel great!
When I was 13 months in I wrote that I was feeling 99.9% most days. I'm about 26 months in now. Truth is, I have many weeks or months of feeling completely awesome, and then have little blips every now and then. Never near as bad as the first 3-6 months. But just enough to freak me out a little and **** me off. lol A few days or a few weeks of dizzy/nauseous mornings and then I'm back to awesome again. What I find strange is how quickly it comes and goes.
I thank God I'm at the tail end of this. It sure makes you realize how strong you are. Sending healing vibes and hugs to all!! Try your hardest to just go with the flow... I know that's much easier said than done, but unfortunately, it's nothing we can really control. Just know that there WILL be an end! (Most of those who have completely kicked it move on with their lives, don't think about posting on inner ear boards and soon we will all be in that club. PS. Having a little decomp as I write this rah rah post... so obviously the decomps aren't near as bad as they used to be.

 
Reply With Quote
Sponsors Lightbulb
   
Old 10-02-2012, 07:19 PM   #3
Newbie
(male)
 
Join Date: Sep 2012
Posts: 5
mike486 HB User
Re: Vestibular Neritis success stories 2

Recent Vestibular Neuritis diagnosis here, it was very helpful for me to get to read some of your posts and recognize that I'm not the only one going through this. I've started doing some more intense vrt (with a physical therapist) and that has made my symptoms worse, but I'm hopeful it will make them better. Anybody have a problem with driving a high speed? Somedays I have a really tough time discerning between anxiety and some underlying inner ear issue. Anyway I just wanted to thank you all and say good luck and hopefully I can join you all in beating this thing.

 
Reply With Quote
Old 10-02-2012, 07:50 PM   #4
Member
(female)
 
Join Date: Aug 2011
Location: Toronto, Ontario
Posts: 56
lovineachday HB Userlovineachday HB Userlovineachday HB Userlovineachday HB User
Re: Vestibular Neritis success stories 2

Cubsmike, huge link between anxiety and vestibular issues. Once I realized that, so much of my awful feeling lifted. That said, I still don't know how much of the nausea etc was due to ear and how much to anxiety. It's hard to let go but it's def in your best interests. I know some people go anti anxiety meds to help them recover.
Wishing you the best! Hang in there! This too shall pass.

 
Reply With Quote
Old 10-09-2012, 06:20 PM   #5
Newbie
(male)
 
Join Date: Sep 2012
Posts: 5
mike486 HB User
Re: Vestibular Neritis success stories 2

Quote:
Originally Posted by lovineachday View Post
Cubsmike, huge link between anxiety and vestibular issues. Once I realized that, so much of my awful feeling lifted. That said, I still don't know how much of the nausea etc was due to ear and how much to anxiety. It's hard to let go but it's def in your best interests. I know some people go anti anxiety meds to help them recover.
Wishing you the best! Hang in there! This too shall pass.
Thanks lovineachday. I'm trying to get better, but I still start to get freaked out when I'm driving a little fast (45mph+) or down a hill. It will be okay at some times and then if I feel the slightest bit off my brain panics and I almost immediately have to slow down. I'm not sure how to overcome those feelings any suggestions? It doesn't seem to follow the traditional anxiety I read about in most books or online.

 
Reply With Quote
Old 11-06-2012, 02:49 PM   #6
Newbie
(female)
 
Join Date: Nov 2012
Posts: 1
lutkica01 HB User
Suggestions would help

Hello,
I was diagnosed with VN 4 weeks ago and have since been to VNG testing which all came back normal. However my ENT still says i have VN. The first 2 weeks were hell for me. I could barely walk and felt like i was rocking on a boat when laying down. The last two weeks my symptoms have improved, however, I still get bad days. I was wondering if any of you had trouble with car rides. I am fine when I am riding in a car, but when I walk out of the car I feel really dizzy and off balance. I am just wondering if anyone else has experienced this with VN? Any suggestions would help as i am so desperate right now that this will never go away

Thank you

 
Reply With Quote
Old 11-06-2012, 08:55 PM   #7
Newbie
(male)
 
Join Date: Sep 2012
Posts: 5
mike486 HB User
Re: Suggestions would help

Has your doctor ever considered 'mal de debarquememt'?

I find it highly unlikely that your VNG was normal and you still have vn, but I'm no expert. I'd highly encourage you to escalate up to a higher doctor and get a 2nd opinion.

Last edited by Administrator; 11-07-2012 at 01:39 PM.

 
Reply With Quote
Old 11-09-2012, 08:26 AM   #8
Junior Member
(female)
 
Join Date: Jul 2012
Location: Minneapolis, MN
Posts: 34
Teetime01 HB UserTeetime01 HB UserTeetime01 HB User
Re: Vestibular Neritis success stories 2

Hi VN,

I was hoping to reconnect with all from the closed post. I thought you were we'll on the way to recovery. I'm sorry to hear that you are still dealing with this. Well, I'm 5 months into this. For the past month, I though I had crossed into being normal again...I was headache and ear pressure free, was walking an hour a day and started limited driving. I was convinced this was just a bad memory...until last night. I took the dog for a walk in the evening, it was dark, and had not walked in the dark before. It was strange, i felt as if I would trip. Well, here we go again. I got home from a 30 min walk and the ear pressure was back along with a horrible headache and the feeling of spaciness. Today the symptoms are still with me...reminiscent of how I felt 2-3 months ago. I'm guessing this is a relapse and hoping it passes quickly. Has anyone experienced this?

Wishing all the best!

 
Reply With Quote
Old 11-10-2012, 12:31 PM   #9
Newbie
(male)
 
Join Date: Jun 2012
Location: Canada
Posts: 6
Gautamm62 HB User
Re: Vestibular Neritis success stories 2

Quote:
Originally Posted by Teetime01 View Post
Hi VN,

I was hoping to reconnect with all from the closed post. I thought you were we'll on the way to recovery. I'm sorry to hear that you are still dealing with this. Well, I'm 5 months into this. For the past month, I though I had crossed into being normal again...I was headache and ear pressure free, was walking an hour a day and started limited driving. I was convinced this was just a bad memory...until last night. I took the dog for a walk in the evening, it was dark, and had not walked in the dark before. It was strange, i felt as if I would trip. Well, here we go again. I got home from a 30 min walk and the ear pressure was back along with a horrible headache and the feeling of spaciness. Today the symptoms are still with me...reminiscent of how I felt 2-3 months ago. I'm guessing this is a relapse and hoping it passes quickly. Has anyone experienced this?

Wishing all the best!
Yeah, I have had a relapse about 2 months after I got all better. after the relapse, looked up who was one of the best docs in the world for this, travelled to him, did the CDP and other tests, did the consultation, and got some new VRT exercises.

 
Reply With Quote
Old 11-13-2012, 03:11 PM   #10
Junior Member
(female)
 
Join Date: Jul 2012
Location: Minneapolis, MN
Posts: 34
Teetime01 HB UserTeetime01 HB UserTeetime01 HB User
Re: Vestibular Neritis success stories 2

Hello All,

Has anyone had an appointment with a neuro-otologist?

I'm 5 months into this and had a great last month...I thought this was over. I had a relapse and have been struggling this past week with ear pressure, headaches and vague lightheadedness. The ENT and neurologist said all the test results were normal and I was fine, yet I'm still having symptoms.

I need to find a doctor who has a clue. I feel like I've lost 5 months of my life and have taken steps backward in the past week.

Thanks all and wishing you a good week!

 
Reply With Quote
Old 11-14-2012, 04:49 AM   #11
Newbie
(male)
 
Join Date: Jun 2012
Location: Canada
Posts: 6
Gautamm62 HB User
Re: Vestibular Neritis success stories 2

Quote:
Originally Posted by Teetime01 View Post
Hello All,

Has anyone had an appointment with a neuro-otologist?

I'm 5 months into this and had a great last month...I thought this was over. I had a relapse and have been struggling this past week with ear pressure, headaches and vague lightheadedness. The ENT and neurologist said all the test results were normal and I was fine, yet I'm still having symptoms.

I need to find a doctor who has a clue. I feel like I've lost 5 months of my life and have taken steps backward in the past week.

Thanks all and wishing you a good week!
Sorry to hear about your relapse.

AFAIK, getting a Neuro-otologist appointment is not that quick, as the healthcare provider has to refer the patient to a ENT and then ENT to a specialised Neuro-otologist. And neuro-otologists are very very busy, and sometimes they are away for weeks for conferences or whatever. That's what happened to me anyway.

I wanted to get this dizziness thing stopped right in its tracks asap, so I paid out of my pocket and went to an non-local internationally renowned neuro-otologist and got the treatment. So far, so good.

 
Reply With Quote
Old 11-14-2012, 06:11 AM   #12
Junior Member
(female)
 
Join Date: Jul 2012
Location: Minneapolis, MN
Posts: 34
Teetime01 HB UserTeetime01 HB UserTeetime01 HB User
Re: Vestibular Neritis success stories 2

Thanks for the response. Two months after landing in the hospital for this, I saw an ENT and a neurologist. Had the VNG, audio tests, CAT scan etc. and was told all was normal, but still having symptoms. I'm trying to get a referral, but the neuro-otologist is out of the other doctors network, so they don't want to refer me. I too will pay out of pocket just to get to someone that might be able to help.

I'm really glad to hear things are working out for you...that gives me hope that this doctor will get to the bottom of it. And, it's great to hear that someone is recovering. Good luck!

 
Reply With Quote
Old 12-04-2012, 10:08 PM   #13
Junior Member
(female)
 
Join Date: Dec 2012
Posts: 21
fatmommacat HB Userfatmommacat HB User
Re: Vestibular Neritis success stories 2

I got violently ill at work.everything was spinning and had severe nausea. sent to the ER. After a day in the ER with tests showing NO STROKE, I was sent home. I could not walk. I could not see well. Moving made me nauseous. For the first week and a half I couldnt walk alone. I had no balance. I couldnt watch TV. My glasses made things worse.I had terrible brain fog. I couldnt use the computer because it hurt my eyes.
My Dr hoped it was allergy related and gave me antibiotics. 3 weeks later I was still not balanced, no driving, TV was ok from a distance and I could use the computer some.I could go to the store with help and only if I pushed the cart for balance. Since I had little improvement, my DR ordered a MRI which read fine. I was sent to a Neurologist who had my hearing checked by an audiologist and gave me Valium (which helped)
The ear DR ran ENG VNG tests. VESTIBULAR NEURITIS and OSCILLOPSIA (shopping cart syndrome) I had an inner ear infection that totally killed out my left labyrinth part of my ear. It will never heal. She said it was remarkable that I was able to do as much as I could with the damage that was done in my ear. (no I never felt sick and my hearing is fine) My right ear is working double duty, thus the balance issues.
Currently Im 2 months into all of this. I feel good! I still cant drive because I can not look behind me with out getting sick.ANd am afraidI cant react fast enough.
I cant walk fwd and turn my head side to side and my vision is still a little blurry.
I loose balance if I have to reach high or bend/squat down. Everything is worse in the dark. I can get around the house with no problems. I have not had dizziness or nausea until I was decorating the christmas tree I guess that circular movement of wrapping lights and tensil was too much because I got sick.

I have to have VESTIBULAR REHAB. This will retrain my brain to not over compensate.
After my first PT session I was given several exercises.
The therapist says If i really do my homework (exercises) I should see improvement in a month. And I must go off the Valium. Being on drugs will inhibit my physical therapy.

Im posting all of this because i have looked for a forum with issues like this to see other ppl's stories and I really couldnt find much then stumbled on this site
I hope my story and details might help someone else...

 
Reply With Quote
Old 12-05-2012, 05:39 AM   #14
Member
(female)
 
Join Date: Aug 2011
Location: Toronto, Ontario
Posts: 56
lovineachday HB Userlovineachday HB Userlovineachday HB Userlovineachday HB User
Re: Suggestions would help

Quote:
Originally Posted by lutkica01 View Post
I was wondering if any of you had trouble with car rides. I am fine when I am riding in a car, but when I walk out of the car I feel really dizzy and off balance. I am just wondering if anyone else has experienced this with VN? Any suggestions would help as i am so desperate right now that this will never go away

Thank you

I had VN 2 1/2 years ago and yes, I had that experience. Sometimes I wondered if riding in a car actually made me feel somewhat better! Temporarily. Especially longer drives. I'd get out and feel awful.

It can be a long slow road but it does go away. Hang in there!!

 
Reply With Quote
Old 12-25-2012, 12:28 PM   #15
Newbie
(male)
 
Join Date: Dec 2012
Location: USA
Posts: 7
js693 HB User
Re: Suggestions would help

hi guys, new to the board, not new to VN.....i've had it now for 11 months and it has been a roller coaster ride to say the least......the hardest part is managing the vestibular migraines that pop up and sap you of your energy as well as make you feel like dog dirt....i found that removing caffeine and alcohol, staying well hydrated, getting reasonable sleep (too much is no good for me), being vigilant with VRT, and limiting strenuous activity has helped considerably......once i step to the dark side, look out........i tried ssri's as well as other drugs with not so good results.....the benzos worked fine, but the rebound effects are just not worth it in the long run.....good luck and nice to see that i am not in this alone........john

Last edited by js693; 12-25-2012 at 12:29 PM.

 
Reply With Quote
Reply Reply




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



bindar (20), studyin (13), Amy1007 (12), Notdiggingdizzy (12), lovineachday (9), hbep (9), Wowwweee (7), missy7777 (6), lefta (6), warpony2310 (6)

Site Wide Totals

teteri66 (1180), MSJayhawk (1006), Apollo123 (906), Titchou (850), janewhite1 (823), Gabriel (759), ladybud (755), midwest1 (669), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 08:09 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!