Vestibular Neuritis- any recovery stories?

Ears, nose and throat
1

Hi, new poster here. Have been suffering with VN for 10 weeks. I was initially diagnosed with a gastro virus due to my main symptoms being dizziness, nausea and diarrhoea but after seeking private ENT consultant I was diagnosed with Vestibular neuronitis. I secretly suspected it was this but think I was in a bit of denial as all the stories on the Internet speak of long term chronic suffering and that terrifies the life out of me.

This condition is hell! I am dizzy and nauseous 95% of the time with lots of ear and head pressure. When I get really dizzy and sick I also get diarrhoea. I've lost a stone and a half in ten weeks as I can barely eat.  It even plagues me in my sleep with dizziness making me wake up and feel horrendous, until I get up and move about which eases it a little.  I have been off work since the start and need to return soon which seems impossible right now.

I have started seeing a physio and have been doing VRT exercises for a week which have made me feel much worse. I used to have the odd few hours where I felt okay but not in the last couple of weeks.  Can it get worse before it gets better?  Reading, writing, typing, watching TV all make me feel Worse too.  I feel like there is literally no pleasure in my life right now and I can't even get relief in my sleep.  I have two kids and have kept as a active as possible, caring for them and trying to keep life normal for them so I haven't been hiding away.  

I don't seem to have had the acute stage at the start which slowly improves, I've just been the same for about 8 weeks and worse for the last two.

im scared I'll,never get better. I would love to hear from anyone who did get better after this time, or at least improved enough to enjoy life again or who was able to return to work.  Did VRT help anyone out there and how long did it take for you to notice improvements? Sorry for all the questions! Any advice would be very welcome

Thanks

2

Hi Cally , i had the same symtms as you and i taught my life my finished the way i knew it, but believe me it does get better. I got a message from a man telling me that water was the asnwer and i must dring about five litres of water a day or even more as it flushes out everything through your body but you Must keep it up for as long as possible. I also attended Physio and was very frightened at first as the physio et me fall back (catching me of course) and the roon just spun round. I am still attending her , but i am fine now. What medacation are you on. ?? I also founf that putting my pllows very high (3 pillows) helped me and i drank plenty of water through the night. There was also something that should be added to the water but i cac't think of it now. I will find out and send it to you, but start drinking that water Now. Calm yourself down, it will go away.

3

Hi Geraldine, thankyou for your reply. I will definitely try drinking more water.  I am not taking any medication as I was advised that this would slow down the recovery process.  My GP gave me prochlaperizine at the start but it made me feel worse!  Did you use medication? How long did it take you to feel better ?

Cally

4

They put me on medication for the dizzeness and some other medication for the sickness in my stomach. More in the line of treating very acute vertigo. I also found when i was walking around i felt like i was in a dream, you know my feet were not moving the right way or something. But i have to say the water really done the thing.

5

Hi,

I am Ben from the U.S.A. and I have commented on this site several times.  

I have found that there are people that have gotten over the whole Vertigo, Dizziness and Equilibrium issue.  Some had Migraine Associated Vertigo, others have reported a spinal condition called  Cervical Spine Disfunction, but all exhibited the same symtoms and they all got better to a degree  The condition seems to eventually reduce itself to a feeling of wooziness or an unsure feeling of not being grounded.  It may take you more time or less time than others, but it does seem that all eventually do get back to a very nearly normal life.  

Here is the states, for the nausia, I have easy access to several over-the-counter remedies, one being a Cola Syrup listing the exact ingredients of Coca Cola and another being a very sugary syrup from fruit ( fructose?) called Emetrol, and it has a strong Cherry flavor.  Both are easy to take and stop the feeling of nausia immediately.  

For the dizzzines there are a couple perscriptions, one being Antivert.  I have heard it works well for many, but my personal experience with it has been that I can't even tell that I took it.  It makes no difference that I can tell.  AND several of my doctors have told me not to take it if I could do without it, they say it slows the rehabilitation process.

If you have time please search for the inputs that I have made and read them to  save me from retyping it.  I have hit upon many different angles of this disease and I am sure you will find my writings helpful.

If I may make a suggestion: (I am not a doctor, but I have been dealing with this for over a year now and have read a lot and gone to many doctors and therapy sessions, and spoken with a great many who have this problem, also please realize that I am from the U.S.A. so it is a little different)  Using common sense, make sure you are over with the virus or bacteria that caused the damage to your Vestibular Nerve. Seek a new doctor and get another opinion, and keep changing and looking and don't accept an answer that doesn't sit well with your own ideas and feelings about the situation.  Stay at it until you get results. Keep doing the exercises that are prescribed by the therapists.  Don't expect quick results, at least from what I have heard and read as well as experienced, it can take a long time to recover to a degree that you feel better.  Surround yourself with friends that truly care about you and have all keep an upbeat life style.  Don't get into subjects that detract from happy, fun, normal, easy etc.  Keeping a positive mental attitude is very important.  Here in my state (Michigan) our Governor has a statement that he uses all the time, it is : "RELENTLESSLY POSITIVE" and you can add to it with a prefix or suffix of anything you want, but keep it positive always.  Remember how important a positive attitude is to someone with a very bad disease?  If they let themselves get run down and depressed it will make things worse.

OK?  I hope you will seek the other entries I have made and find them useful to build your knowledge base on this issue.  Remember Knowledge is King.  The more you know, the more you understand and the less distressing everything will be.

Bye for now

Ben

6

Yes, things do get better.  I had the exact same symptoms that you have listed and I am now in month 10 of my recovery.  And yes, you will feel worse from the vestibular exercises while the brain is compensating and the nerve inflamation is receeding.  If you are under the care of a physical therapist they should be guiding the number of exercises and the amount of time that you spend on each.  Don't overdo it.  My exercises lasted for 10 or so minutes each day.  The foggy headed feeling and disequilibrium cause a lot of issues with the brain being over worked.  I felt the same way in the beginning as to whether or not this would ever go away and some days just didn't believe that it would.  After 10 months I am fiinally seeing light at the end of the tunnell and I am fairly close to 100% these days.  Age plays in to how long the recovery takes, as well as the amount of damage suffered by the vestibular nerve.  One thing that my Otologist recommended early on was a restricted sodium diet.  You get to where you try or do so many things that you don't really know what is helping and what is not.  I took Zofran for nausea but, found an over the counter chewable called Nauzene helped me more than anything.  The nausea and diarrhea symptoms are multiplied by the anxiety that comes along with this condition.  In my case I was in month 4 when I started seeing improvement.  At first I could see improvement on a weekly basis but, the last few months I saw improvement over maybe a 2 or 3 week period.  You won't wake up one day and it be gone.  You will just see less and less of it as time goes by until you get to the point that it is more of you hanging on to what you think are still symptoms versus your life being like it used to be. 

I do agree with the drinking of plenty of water to stay hydrated.  I also take a low dose aspirin every day to help reduce inflamation.  Also, wash my sinuses out every day with a NeilMed rinse.  That and the low sodium diet along with staying active seems to have worked for me, along with the VRT.  A poster on this site posted something that really stuck with me to aid in my prospective.  She said that recovery from VN is measured in weeks and months, not days.  That has proven to be the case for me.  It will get better for you!!!!

Feel free to ask me any questions as you progress.  I will offer any assistance I can from my experience. 

7

Hi Terry, thankyou for sharing your story, it gives me some hope. The ENT I saw recommend a low salt diet which has been easy to follow as I can barely eat so when I am hungry I am trying to eat fresh good quality food. 

The last couple of nights have been awful for me, I think the VRT has sent my brain into overdrive and the dizziness and nausea have been really bad, feels like I'm constantly moving in bed and I have to sleep propped up.   My physio recommended 4/5  sets of exercises 2-4 times a day. I've been doing 3 and trying to go about normal day to day activities 

I may try to find the medications you mentioned, are you in the UK Terry?  The low dose aspirin makes sense and can't do any harm .  Thankyou so much for taking the time to reply and for the advice.  I'm sure I'll be bugging you constantly for advice!  

I need to to work on killing this nausea and getting my appetite back as I am continuing to lose weight and I can't really afford to lose anymore.  I was told that anti emetics can delay the compensation process. Are these drugs you mentioned considered anti emetics?

Thanks again Terry

8

Thanks for replying Ben, I will have a look at your input. My GP knew NOTHING about these disorders and I found the private ENT to be quite dismissive and he couldn't really answer my questions.  I may go back to a different GP and asked to be referred through the NHS which will take a few moths I would imagine!

Thanks Ben

9

Hello,

Yes, doing VRT will make you feel worse before getting better, because it's working through your vestibular system and brain to compensate.  I really don't know how long until you should see a difference.  Everyone's different.  Did you have any vestibular testing to show if you have damage to the vestibular nerve?

I hope you get better soon.

Take care,

Nicole

10

Hi Nicole, thanks for your reply. The ENT consultant just tested my hearing and balance and went by my symptoms, which do seem to match VN but didn't do any damage testing.  I've eased off a bit on the VRT, especially today as I have poorly children who have been up half the night!!! Going to stick to around 5 mins three times a day for now.

Thanks

Cally

11

You're welcome, Cally.  The testing I had were:

Rotary chair

ENG/VNG-Caloric included

Positional testing

VEMPs

You might want to ask about these just so you have a complete check on your balance system.

Take care,

Nicole

12

Hi Terry, I have all the symptoms that everyone is mentioning except I have one that no one has mentioned and that is I have horrific ringing in both ears. I have had these symptoms for over a year now and have been they all the testing you guys have. I did VRT and after a month , the therapists sent me away and said it was not helping and he didn't think that was my problem. 3 ENTs have sent me away also. The ringing causes severe anxiety.   I was wondering if anyone else has the horrific ringing?

13

Hi Brenda

Yes, I have tinnitus in both ears and it was worsened with the VN. It has settled down some over the past 10 months and sometimes it is back to where it was pre VN. When I have another issue with my inner ear it gets bad again until the ear issue settles down. No cure for tinnitus. Some I know take Xanax for relief.

14

Also, I find it hard to understand that the VRT was evaluated for effectiveness after a month. Took me 6 weeks to begin seeing any improvement from it. In fact I still do the exercises after 10 months.

15

Hi Terry, Thanks for responding. Yes after one month of VRT, he said, "you are not improving, something else is going on with you, you are wasting your time and money." I felt very defeated again and lost. I had to look at an "X" on the wall and move my head back and forth. Then I had to walk with an "X" in my hand and move my hand left to right as I was walking. Just curious, what are some of the exercises you are doing? I am desparate and will try anything. Thank you

16

I'll private message you shortly, if that is ok.

17

Hi Terry thanks for commenting - everyday I scan google looking for success stories- I've had this 14 months - my ENT diagnosed me with mal debarkment syndrome but I don't beleive it's that- I've one blocked ear and a watery feeling inside - also feels like a tipping to one side and a falling in faloor- especially when I look up- these are problem in the ear symptoms- my actual Dr thinks it's defo vestibular neuritus- I had an erupt bad vertigo attack out of no were vomiting felt like I was gonna die- was in bed for a week then it's got better from there- but it's still doing it and it got better an better - then stopped getting better and stayed the same- it's gone from a rocking boat sensation to a tipping and falling sensation -if I shut my eyes and touch the wall with both hands it feels like I'm falling through a hole ?!!! Will this get better I'm only 23 I can't work it's causing me to be sad an moody but am doing my best to be positive- maybe it's not got better cus I stopped vrt exercises - I don't drink alcohol don't smoke don't eat gluten salt or too much sugar and I'm losing weight fast - I have mornings where I feel loke here's nothing wrong with me then it comes bk like a falling sway - xx

18

Hi Geraldine,

I've been having problems since March 2012 after I had a sinus infection.  I've been diagnosed with probably vestibular neuritis, visual vestibular hypersensitivity, MAV and now chronic subjective dizziness.  I get that feeling like I'm in a dream a lot.  It almost went away in 2013 but then I was hit again with problems in September 2013 and since then have went downhill.  Now, I'm feeling like I'm in a dream almost all the time. 

May I ask, do you still feel that dream feeling or has it went away and what might help it go away?

I'm so sick of feeling this way, as I'm sure all of us feel.  I wish you the best.

Nicole

19

Sorry to hear that.  This is a terrible condition at any age and the hope quickly fades.  I was first diagnosed with BPPV and went through 2 or 3 weeks of exercises, Brandt Daroff, without seeing any relief.  Went back to the ENT and finally had an ENG performed that showed a deficit in my left ear and what he said was Central Nervous System damage.  Began VRT at that time and had an Epley performed at my first visit.  It seemed to help but, I felt the impact of that for several days.  I did 3 months of VRT with a therapist and then continued them on my own, even added some I found on Youtube, and still do them today.  There are so many inner ear issues that can cause the same symptoms that it is hard to determine where the actual damage is and what is malfunctioning.  I have always recommended on any posts that I make for those with any inner ear issue to seek out a Otoneurologist.  They specialize in only inner ear issues and are miles ahead in their knowledge for treatment.  I have seen steady improvement over the course of 10 months even though I still have a ways to go.  Some days I feel like my old self but, others I feel that I am still 90% of where I need to be.  Still have some issues in large stores and some lightheaded days.  I do mostly what I want each day and work full time again with a 1 hour commute each way.  I know that a friend of mine saw an Otologist in Memphis, Dr. Shea, and was told that the ongoing issue of disequilibrium, vertigo or such, could only be treated with Intratympanic Steroid Injection.  He said that it cured him.  My Otologist told me that it would be something that he would look at for me if I did not continue to see improvement.  My left ear had a full feeling for probably 5 or 6 months but, now feels open.  The feeling of fullness is a symptom of nerve damage to the vestibular nerve as I understand it.

I do recommend the continuation of the VRT and the Otologist.  I do see light at the end of my tunnel but, there were times when I didn't.  I felt that it would never end and found little positive reinforcement that it could.  My Otologist told me, when I asked how long it would be before it got better, that it takes as long as it takes.  For those of us that are suffering, those are not very encouraging words but, there is hope of a positive outcome for most of us.  I know that it is easy to get down but, we are all we have in seeking understanding and knowledge.  If you've never experienced this you cannot understand the torment and terror that it brings about.  There is hope and you can get better!  It just has its own timetable.

The low sodium is good for the issue and the only other things that I do each day is take a low dose aspirin.  Did that after reading another poster stating that an old GP that she used prescribed Ecosprin for her and told her it would get better in a couple of weeks.  Hoping that it, aspirin, is helping any residual inflamation.  I have been on 3 or 4 rounds of steroids during my 10 months and I always come out feeling better after each round of those.  I do take .25 Xanax as needed when the anxiety overcomes me.   

20

Hi Terry,

May I ask, did your or do you have any strange derealization, where it feels like you're in a dream and not here?

I hope that VRT will help this lessen.  I've had problems since March 2012 and felt better during 2013 until that September.  Then it's been downhill from there.  I feel the derealization pretty much all the time.

I have seen a neuro-otologist who diagnose MAV and a neurologist who said it's chronic subjective dizziness.  I just don't know what to do anymore.

Any advice would be greatly appreciated. 

Thank you,

Nicole