Vestibular

Thanks Chris!

So would I. Ha. Suffered since October. Next step is vestibular therapy I must admit tho it does make you tad sick & more dizzy but he said that's good think as its you're body working x

It's a lovely day here, I just managed a walk with a friend who counted that I stumbled 48 times! And this is a good day! Just since Feb for me, yesterday was particularly bad so I try and take advantage of any easing up.

Im hoping to get some therapy once the balance tests are done and I get a firm diagnosis. Hey ho, have to try and keep smiling!

Well done for walking tho I can't walk ha I get soo dizzy and worried I'm gonna fall.

I horse ride which is good for balance. Just got back into it after 2 years.

Anything is worth a try! If you don't try then you can't moan that's how I see it 😊👍🏻 try everything x

I take b-100 vitamins one a day that's good for stress ect the women in the shop recommend it to me. Just a thought. Also every night I have a bath with oil ( £2 Amazon ) does help you to relax.

My vestibular therapist was lovely I went in there bursting in tears & he said you will get better I see this every day. I said I feel mental & Drs keep saying I'm mental. & he says they say that cause it causes depression & they have no diagnosis. I was fine till all this started. Iv now stopped counselling as I can't afford it anymore plus I don't feel I need it once a week all I talk bout in there is my dizziness & she even said to me go get it sorted.

Thanks Hun hope St. John's work for you they do some people but didn't fit me ( bad rash )

Xx

Hi Chris,

My sister and I took St Johns but it caused us both to have severe migraines, which is the last thing you need with dizziness and sickness. 

Be careful, maybe check with you GP or Pharmacist. 

Pauline

Thanks Pauline, I spoke to the lady in holland and barrett and she also said avoid for dizzyness so I got some milder ones called "Quiet Life" (!), which are a mix of motherwort, hops, passiflora, lettuce and valerian extract and a few vits, really just to see if even a placebo effect might help...  

What most doctors don't understand is that it is a vicious cycle.  The anxiety is caused by the feelings created by the vestibular issues.  I was diagnosed with Vestibular Neuritis, VN, 15 months ago.  I have read extensively that anxiety feelings have their origin in the vestibular system.  I have read so many posts about individuals that had no issues with anxiety before they experienced VN.  Most doctors don't know how to treat nor diagnose inner ear issues.  They can't see anything and they mistakenly diagnose the issues that can be verbally related to them.  And since we have to verbalize them it is hard for us to fully explain what we are feeling.  If you have never experienced this, VN, you can't fully understand how we are explaining that we feel. 

I have found that time is the healer.  I have done several things to try to facilitate recovery but, with the passage of time things have improved.  We never really know if the issue is excess fluid on the inner ear or if it is damage to the vestibular nerve.  So, most doctors recommend several things for recovery.  The best specialist to see for this issue is a Neuro-Otologist.  This physician specializes in inner ear issues.

After 15 months I stay somewhere in what I feel is a 95% recovered state.  I do still have some times when it will drop back to 80% or so but, they are usually short lived.  My balance is back to where it was pre-VN but, I still experience some motion feelings in certain head movements.

Who wouldn't have anxiety after dealing with a health issue for months on end, feeling like you were about to pass out, feeling like you couldn't balance, like you were on a ship about to be sea sick, like your world was spinning around you, etc, etc., and having no physician that could tell you what is wrong or when or if you will get better.  That's the part that the physicians don't seem to get.

95% of sufferers of this stuff do recover.  The issue for us is no one knows how to determine when.  I still have a ways to go but, over the course of 15 months I have seen steady improvement.  I do still do vestibular exercises, still try to maintain a low sodium diet, still stay away from caffeine, chocolate and alcohol.  In doing all of that I still believe that time has been the major ingredient and that the body is healing itself. 

Yes I completely agree with you terry it is visions circle. Of course you're gonna feel depressed ect cause every day is a struggle & you feel as tho you're going to die. Drs just class it as MH issue. Even the vestibular guy said to me all his clients say the same. And he doesn't think it is a MH issue he says it causes it. I said all I do is lay in bed most days & he said its cause it's easier to do that! You're body is static so you're not moving around feeling dizzy & his right.

Drs are just quick to get rid of you as they have a busy day. I pay private as well now as I feel I get better care as I find I'm not rushed he spent an hour with me and I fort that was great.

I'm glad to hear you're on road to recovery. Iv red it can take a couple months. It also makes you worse before you get better ( Iv been sick & dizzy bad only from 2 days of the therapy ) but he said that's a good sign. We can only see and do it on a waiting game. My dad, cousin & his gf are so supportive. My mum isn't supportive at all she keeps telling me she wants me to take a happy pill & shut up. But Iv tried that and made it worse I was not myself. Maybe that's her way of dealing with it but it really hurts me.

Well done terry for doing so well and stay positive x

Hello Michelle,  Ben here,

11JUN2015 @ 5:00 GMT

I have been diagnosed with VN, and it has affected my eye sight.  Going on a little over 16 months and I have maybe 80%  of my original level of self confidence.  I am able to walk with out aid of my rollator for short distances. I can read and I can drive. (not well though)  My eye condition called extropia strabismus, which means I am having trouble keeping my Left Eye on the same object as my Right Eye.  My Left Eye will turn outward if I relax my attention for even a second, and trying to keep it on the same object makes me very fatugued.

So far in my quest to correct my vision problem I have found a couple exercises that are supposed to help.  They are Pencil Push-Ups, Brock String and Barrel Cards. 

I believe that time is probably the actual healer.  All the exercises seem to be something the professionals give me to take my mind off how long is has been and give me hope that it will (someday) improve.  They tell me that I need to do them to help with recovery, but in reality I can't say that they do.  I know that doing more of them, or trying to speed up the process by adding more exercises does not work for me.  I seem to make the same amount of progress either way.

Michelle, I would like to know what exercises you have been given for your eyes.  I am trying to get in to see my physical therapist but it is going to be another month or so, and in the spirit of belief, I would like to do prescribed exercises while I am waiting to get in.

Anyway, good luck to you and do try to keep your spirits up. This is supposed to pass. ( I believe it will, just wish it was quicker)

Ben

Hi Ben

His given me to sit on a yoga ball close my eyes and move my head and hold up one leg ( I can't do it very well at all )

2nd one is stare at a dot and move head around.

All the best with the recovery. I really hope I get better as I'm only 23. I hope we all do for that matter.

Hey Anne he said I could of had bad migraine or bad ear infection & it's caused it. It's my right eye he said doesn't focus. He told me to close my eyes & jog in spot & I ended up in corner of the room

It's so bizzare I didn't even know I did it. He showed me video after & it was you're body compensating so you're being pushed if that makes sense

I hope things work for you Hun. ❤️❤️

Oh and I do 1 eye & 1 balance thing 5 times a day it makes you feel worse & feel sick but he said that's good sign. Xx

thanks Michelle.  Yes as well as being diagnosed with BPPV i also was told i have MAV (Migraine associated vertigo) but without headaches which affects my vision, but who knows,  so had to cut out all kinds of foods that may trigger it.  Do you feel you are sloping over to one side when you walk sometimes? I slope over to the right and my vision goes funny as though i'm not seeing as clearly or out of focus.  I'm hoping to get some answers when i go to see the neuro otology dept., when all this started in September 2013 i thought it wasn't going to last that long and never fully explained all the effects it was having on me but now i realise that i need to get a proper diagnosis which is more than one condition as i know I have BPPV but also something else going on with my eyes and also a bad neck, anyway something definitely wrong with me from the neck up.

I hope you get much better really soon and stay there.  Keep me posted because it sounds like you may be on the right track with a proper diagnosis - at last  

Michelle, also just to mention i have also devised my own set of exercises, trying to walk in a straight line with my eyes shut, which was almost impossible when i started trying it a few weeks ago,  but now i can manage it quite well and also standing on one leg with my eyes shut.  I want to get through this compensation thing without taking drugs if possible as i thought i was going to have to give up work.  I have also asked to be referred to Occupational Health to explain how this condition may affect me in trying out carry out my duties as some days, weeks are better than others and if after 28 years of nursing they can't help me make adjustments at work then i will have to leave but i am hoping i can find a way to get through this and still get on with my life even if i do have to find another less stressful job because although we have this condition i have no doubt that stress (even if i am unaware of feeling stressed) plays a role in it too and i realise now i have to do things much more slowly which isn't always the pace at which managers want us to work and i have been used to doing things quite quickly.  Now i am thankful if i can get through a door without banging into it

ENT said to me the same it was MAV

But vestibular said its my right side not focusing very well.

The lady below said she's been suffering for 5 years 😩😩😩😐😐😐I think I'd kill myself before then. Sorry sound so low but I dunno if I could cope that long. I hope I'm going on the right path I really do. I worry so much every night that I'm not gonna get better & cry every night just wanting my life back. & yes I do sway to left. It's my right side pushing me.

I so hope this works.❤️❤️❤️ And you Hun! Hope it works for you too! I hate to see people suffering with this!

Yes because my left side is my weakness i sway to the right.  Between us we might be able to walk in a straight line

That's our body compensating strange things xx

I tried walking with my eyes shut and I too move to the left! I felt very anxious about doing it, because of the dizziness. I have an appointment to have my eyes tested again. It's surprising how much a good opthalmologist can pick up in the examination. 

Pauline

I did it again yesturday jogged in the door closed my eye went to my left.

Haven't done the excersizes today oops as been keeping busy today. So Iv had no time. I will do couple this evening instead.

I'm also looking at pics & my left eye I close it slightly ( vestibular guy said was my left )

My eye test is booked for 29th

Let me know how yours go let me know if anything happens xxx

Hi Anne, 

I realize this is an old thread but I am wondering if you've been able to go back to work. I am a nurse as well and I m at the eight month mark with vestibular neuritis and visual symptoms. I really want to go back to work but I'm terrified that I won't be safe around patients!  

Any advice or exercises that helped you would be most appreciated.    

Thanks!