Vestibular Neuritis likely diagnosis

I would love to start a diary with some of you all!

Ok that's fab how do we do it ?!

Can we do it on here?

I'm not sure would have to find out if we can!

They all kind off overlap just the Bppv is more positional. Out of the 6 yrs of being dizzy the first 2 I learnt to walk on my own again and eventually drive I had 2 yrs of vrt then I had 3 yrs of being 90% dizzy free was just dizzy by night etc and then bang have de compensated and bppv so feeling am back to square one

Katie, likewise, i have had recurring bouts of BPPV in the past 2 years.  I am now thinking i may have to leave work because my vision is wonky, problems focusing and balance issues.   I was making a good recovery for a few weeks and then it will return when i roll over in bed or look upwards and then back to square one.  I get optimistic when i feel better and then fed up when it all comes back again.  Financially leaving work will be a problem but i don't really know what else to do as i am exhausted by the recurring bouts of BPPV and trying to work whilse it is still a problem.

Do u have epleys or do dixi hall pikes ?

It's so up and down

Do u sleep up right ? I am back on 3 pillows and I won't lay on either side had bppv in both ears over the years.

I find the false motion hardest looking at the walls and seeing them Bob about a little hard to concentrate and it seems so much worse now after being free of them for so long ! Then there is the vestibulaopthy that causes similar symptoms.

I left my job as there was no way I could keep it up I did try I know work for mysekf so Is note suited to me.

It's so hard and I have a 6 yr old to

i had 2 epleys done and felt neither made much difference.

Does using 3 pillows help you?  I have a neck problem which would make my neck worse sleeping on that many pillows.

I hope things improve for you soon

I have a bad neck from years of sleeping on 3 pillows ! I use a neck support to is all soft and takes the strain off .

I find the bppv is less likely to come in the night as I don't slip down or onto my side

Hi Ben I strongly disagree and feel that's false information.

I have 2 friends that after 8 years of bppv and more epleys then u can imagine have had the plugging operation so it is not just a particle to remove they often stick on the cupular and during the epley the head is shaken to try and remove them. Also they can move into the wrong canal so the epley will not help and a log roll is needed.

The nystagmus is from the bppv it's the best diagnosis as it shows the miss firing from the ears and eyes. VN is not nystagmus it is the general feeling of being drunk as is BPPV the symptoms are all very very similar.

You must not to any VRT until you have seen a vestibular physio as u can make things worse. VRT can indeed be used for BPPV once it has gone so u can compensate agdin from the miss firing signals they cause.

VRT is very specialised to each person.

Any damage will cause tiredness as our bodies fight doubly hard every day so sleep and rest is so important I first got this when I was 6 months pregnant and until my daughter started to sleep through the night age 2 I was fighting a loosing battle as was so tired. Blurry vision upon looking up and down is very common with both VN and BPPV as Is the split second delay upon head movement.

Anything from a different bed or a different room or shops with lots of colour in or restaurants the list is endless they will all be difficult, I can't swim at all anymore because of the movement of the water it stays with me for days.

I was very lucky to go private and find a consultant what people class the " best in the uk" people travel from all of the world to see him so I am 100% with what I am saying as I have experienced it all and learnt over 6 yrs.

It is good hour bad hour good day bad day sometimes my life stands still and it's great sometimes things Bob about all over the place and it's very upsetting.

Kate, thank you for that.  I totally agree, especially about the good hour, bad hour, good day, bad day.  My vision is so wonky/blurred with this condition most days and it is exhausting.  I am going back to see my GP tomorrow to see if he can refer me to a neuro otologist as i have already seen ENT and been diagnosed with BPPV and query MAV (Migraine Vertigo0.  I don't get any headaches but have a dull pressure at the base of my neck, ears and behing my eyes.  ENT said my problem was probably caused by a head injury many years ago and i haven't noticed it until it got this bad.

So, in summary, you see the "best in the world" and you still have the problem? Dread to think what that was costing! most people wouldn't be able to afford that.

No offence, but where's the benefit in any of this?

It  would be good to hear more positive outcomes in some of these postings. 

I think miss leading people with wrong info can be damaging it's had enough as it is.

MAV again presents in similar ways as all related. I suffer from peri menstrual migraine and boy the dizzies are so much worse hormones can play a big part in it.

My friend has MAV and light and movement is the worse for her she plus hormones, she has all the symptoms I do apart from positional.

You need to see a specialist an ent is great at

every day stuff but the first ent I saw said it

would all go in a few weeks mmmmmm 6 yrs

on!!!

Walking is one of the best things but can be the hardest as afterwards can feel awful and the confidence isn't there.

How do u do travelling ? Get much false motion afterwards ? Nausea ?

I have days like today when the walls are what I call " breathing " and when I look up its blurry and I feek like everything is bobbing about and I think why me 😞

I saw my consultant last week confirmed bppv on the left again which is causing me the probs again,was a 7 hr return journey 😞

Do u have friends and family that try and understand ?

Not sure what's with the sarcasm any vestibular damage is done it can't be fixed by medication it's down to each persons brain to how it compensates if u had read my post I was 90% dizzy free for 3 yrs so it does work very well.

No I couldn't afford it either but I did what I could to get a correct diagnosis from some one who's field is dizziness.

I have lots of positiveness I couldn't walk 6 yrs ago and now run a business and have a little girl the bare facts are vestibular damage changes people's life and just when I thought I was ok and recovered i now can't walk without holding on I can't drive anymore

If u have positve experiences then great lets read it

i have left sided BPPV confirmed by nystagmus during the epley manouver.  I also think i have something else going on as the pain i get in my neck, as have an abnormal bulging disc also affects me.  My eyes are all over the place.  I drive as a community nurse and it is probably the only time i don't notice the imbalance as my feet are off the ground but reversing is trick as if i look over my shoulder everything goes wonky with my vision.  I can't seem to get my eyes to focus some days and if i look upwards everything goes strange too. 

Thankfully i don't get nausea. It just seems that everything no longer looks of feels normal anymore.  On a good day everything looks clear and it is a lovely feeling to see things clearly but that doesn't last very long. 

It's hard to explain to someone who doesn't have it, all the different sensations because to all intents and purposes i probably look quite normal on the outside but inside everything is all over the place.

I was also on Naproxen for a trapped nerve in my neck.  I took it with good effect for months and then noticed i was feeling quite depressed, apparently it can cause depression so now i try to manage without and thankfully the pain is manageable at the moment.

I also think flying affects my ears and makes me more susceptible to a bout of BPPV.  I think i have now had about 5 bouts of it in the past 2 years.  I think i am having problems with the compensation following each successive bout and the intervals between one bout and another are becoming shorter.   I'm still hoping i can improve though.

I can't walk too far as start woblling up and down when i step up and down on uneven road, don't even know sometimes if i am walking in a straight line but try to set my eyes further afield and look forwards rather than straight ahead of me.

My work colleagues are sympathetic but management doesn't really get it and as my job involves driving and being out and about and then returning to computerwork i can be all over the place.  I have permanent tinnitus and partial deafness following the head injury assault at work 19 years ago.

Thanks for sharing your symptoms because i find i struggle to describe them in words that explain how it's affecting me apart from saying 'i'm all over the place'.  Stay strong

I'm seeing my gp tomorrow to say i don't think i can continue working safely anymore. 

Hi kate,  Ben here,

Please understand that I try to qualify my statements with " I not a doctor" and "I see things in black and white".  I do not intentionally try to mislead people, and I wouldn't want anyone to mislead me, but that is exactly what has happened with the myriad of specialists and doctors that I have seen.  They seem to be in a hurry to make a diagnosis, and then try to sell me something.  From hearing aids and drugs to rehab exercises, I have spent tens of thousands of dollars trying to get a straight answer.  That is why I said I tend to see things in black and white.  When someone who has a practice tells me one thing, then bends theri words and talks a long talk, and then tells me the opposite, I start to try to place the things that are measurable into catagories so I can keep track of what they are saying.  A lot of times they will answer a question that I ask with " yes and no".  When I hear that I go away in my mind, because I just can't have a yes and no answer.  I have to have straight forward answers and executable directions, and I can't go back and forth.  So I am sorry and I apologize if I didn't make myself clear enough to keep from misleading someone.  I am only trying to help.  When I  read Mike's account of what had happened I thought I can really relate because of my own experience.  I have had 3 different diagnoses.  I have exotopia strabismus right now as the last clinging symptom. With all of the different exercises and maneuvers, I was told by tharipists that the BPPV exercises might make me feel more of the sensation of woozyness, but that was good.  They said I need to do everything I can to bring on the feeling and my brain would learn to disregard it, and I believe it has worked.  I was also told all about diet, no salt, no caffeine, no sugar.  Then I tried some caffeine and it made me feel better, like I was more awake, and the therapist said that was ok.  So, I have extrapolated my opinion from all of that.  Please try googling ;  Vertigo Treatment - How To Treat Vertigo - YouTube and see the model of the Labyrinth that the doctor is holding, and listen to her speak on the BPPV.  I only want the best for myself and anyone who happens to listen to me, I mimic those that I think are straight shooters and I want to give the information freely that I feel is good information.  These are only my opinions and I usually try to qualify them as such.  So please forgive me if I have erred and remember that I too have a degraded ability to think clearly.  I am only trying to help.  I have nothing to sell, and care not for popularity, nor do I patronize anyone beyond what I feel is their merit.  For the past sixteen months I have not worked, I have only gone to doctors and therapy and been given tests and read upon this horrendous disease, listened to others, looked at videos and made posts on forums.  I think to this minute that what I believe is true and perhaps there are more than one diagnoises for the same symptoms and I need to see shades of gray, but right now I have made tremendous progress and I just want to share my delight with those who sound desperate.  I humbly apologize and hope I have not offended anyone nor sent them in a bad direction.  

Ben

Hi Anne how r u ? How did it go with Dr?

I think what I have learnt is there is a lot of grey not just black and white I am a black and white person but with dizziness it's a different story

I don't Google anything I used to 6 yr ago and it led me to a brain tumour, Parkinson's and so many other things that have dizziness as s symptom ! I suffer badly at the moment from

Health anxiety so I have stopped googling as it comes up with things that just are not true!!!

Like I say the main diagnosis for BPPV is nystagmus not for VN and if someone reads something they then believe to be true and it's not it can be damaging.

It's great to read you are making a good recovery as that's what is so important 😃😃

I to was 90% dizzy free for 3 yrs and I thought I had cracked it but am now 90% dizzy every day not driving any more and back to fighting a battle again so I to have to believe good days will come again and hurry up !!!!!

Hi Kate

i went back to my gp yesterday.  He's now going to refer me to the 'dizzy clinic' and has given me some more tablets.  I have had about 5 bouts of bppv in past 2 years but it is the recovery from it and balance issues that are most problematic for me as my vision is also affected and find it hard to focus my eyes.  I have told him that it is having such an impact on my job that i will have to leave as i can't manage both working and trying to balance as it is exhausting.

Hi what tablets do u have ?

Prob is with tablets they act as a vestibular seditive so takes longer to compensate.

Yes doing what u do it must be so so very difficult and they adds the dizzys as they love anxiety and strrss

Agree i am reluctant to take meds but it's a case of trying anything so i can continue working.  I was on stemetil originally which did nothing, now i've been put on citirazzine antihistimine which i am not going to take 3 times per day but once a day and see how it goes and increase if no improvement.  I asked the gp if my brain is too old to compensate and that is why i'm struggling (age 57) and he said no cos our brains have plasticity, but i suspect that each and everyone of us will do so at their own pace, and for me i think the bouts of bppv keep knocking me backwards, to start over again.  Today i feel slightly improved but i have taken the past 2 days off sick to give myself and chance to recover without the stress of work on top of it all and am hoping to go back to work monday.  I was wondering if they can just assign me to a desk job until i feel more stable rather than out driving around in the community.

I don't know how it will go until i get back to work and see how i feel.  As you say, one good hour, one bad hour, one good  day, one bad day, definitely planning anything has gone out the window. 

Hi Ben thanks for the link to the youtube video.  I did this exercise, sat down for a while and then had a fleeting dizzy attack whislt sitting completely still which i haven't experienced before.  Who knows what the heck is going on.  Hope you're feeling better today, it's difficult but at least there are others out there who know what it feels like, cos' trying to explain it and all the different layers of it to someone who doesn't must make us sound like some kind of hypochondriac with all the different symptoms, like the layers of an onion.  By the time i'd finished trying to explain it all to the GP yesterday i said the same thing to him, i must sound like a hypochondriac, because i was also saying how i felt my neck was also affecting my balance,  but he seemed very sympathetic.  I say to colleagues at work, who are quite supportive, i may look alright on the outside but inside i'm all over the place.  They often invite me out for an evening out with them but i give my apologies because i know i'm so exhausted.  Only 2 years ago i was still throwing myself round on a dance floor with the best of them as love dancing but wouldn't be able to do that now without probably ending up in A&E

It's very isolating my friends have dissapeared

Would anyone like to start like a diary so we could write daily to support each other ? I would very much like to do that

Hi Anne, Ben,

I would like to let you know that I am 63, and as part of the "generation that will never get old", I actually have never felt old (unless my date told me so). I have always felt and looked so much younger than my age....that is until this hideous disease hit.  

Hypochondriac?  Get this; I actually asked my gp at the last visit, for the 2nd time, if I am in the early phases of Alzheimer's or dementia.  This kind of talk prompts the question about depression, to which I replied this time "No, but it is starting to make me angry".  I hope I'm not heading toward depression, I need that like I need Poisen Ivy. 

Hypochondriac?  Our lives have changed a lot!  We may look normal, only we know what we are feeling and others don't have a clue.  Because we used to be normal, and know we are not, and desperately want to return to it.  For you, maybe dance.  For me to drive my vintage muscle cars or hunt in the woods with my dogs. That is why I came to this forum. At least we all know what each other feels and I am including the emotional part of it too!

I don't know how to have a relationship, I have always avoided crowds and I stay at home a lot (even befor this "thing" hit).  I am a middle child in a family of 12.  My mom's email name used to be "10 Boomers".  So, I have always sought a quiet place, to stop others from telling me what to do etc.  But, I might like to explore the idea of a diary as Kate has mentioned, but I doubt if I would be a good candidate to give support, but I will give opinion unless I get beat up too much.

Anyway, I just keep reading, listening and looking for reason, direction and understanding of this "thing".  Something I would like to tell you is that I have used a couple scenarios to help others understand what I am feeling.  One is, I have said that I feel like someone that is in the middle of blowing up a big beach ball or air matress.  I have a dizzy light head feeling, and feel like I need to stop for a minute to let my head clear, but it doesn't ever clear. Other times I tell people that I feel like I need to wake up.  Like I'm still sleeping, but I am up and around.   I told my boss that I feel like I am having an "out of body experience". That freaked him out, and he immediately stopped questioning me about it.  

Anne, just typing this stuff is a form of therapy for me.  I have to look up spelling and I am starting to get my typing skills back.  I have to think and proof read.  That is increasing my Cognitive Skills.  I still make a lot of mistakes, but it is getting way better.  

I hope the best for you and bid you a good day.

Ben

 

Hi Ben

thanks for your reply.  It's late her so i'm off to bed and get back on it tomorrow.   It doesn't matter if sometimes you get misunderstood if your intentions are good, that's what's important. All best wishes. Anne.

Hi Ben, nice to hear from you again. Glad you're back at work. I know I am suffering from depression. It hasn't been diagnosed, but the signs are all there. My GP is reluctant to give me tablets for it because of the other meds I am taking (In particular Warferin which I have taken since having a stroke 3 years ago)  I have also wondered about Alzheimers, hope I am wrong; Memory fades, forget descriptive words, names and faces etc. I have always been very articulate, so this is frightening. 

My confidence went following the stroke. I only drive short distances, generally in and around my local village. Added to which I now have this 

Vertigo to deal with, maybe good reasons for being depressed?

 

Kate, I'm sorry if you think I was being sarcastic. This wasn't my intention. I was commenting on the frustration of seeing great improvement, consulting the best in their field and it still comes back. Maybe I worded it wrong, my brain is all over the place at the moment. 

I don't have any positive experiences to report, I'm hopeful and as soon as there is I will share it. My latest consult with the GP and blood tests reveals I have an Underactive thyroid condition, for which I have just started treatment. (I was previously Overactive). Research shows Thyroid issues can trigger Menieres and vertigo issues.

Wish you well and hope we can still correspond

Pauline

Pauline,  Ben here,

17MAY2015

I am not working yet.  I didn't mean to mislead or infer that I have recovered enough to  work, still way to much confusion going on when I'm standing up.  After only a few minutes I get fatigued and that causes so much distraction that I can't think or reason.  If I try to keep going, I get panicky and really start looking for somewhere to sit down, which only works partially to stop the confusion.  For me the only way to clear my head is if I lie down for 1/2 hour or so.  My job is supposed to be waiting for me if I can get back there soon, but as of right now, still too much competition for keen and quick thinking.  My job is too damanding for me at the present. 

Ben

I don't want to scare anyone but I had bppv apparently in 1996, not officially diagnosed until 2000. I had a vertical nystagmus, not horizontal which to the neurologist suggested a central cause.

He did the eply maneuver and things calmed and mri scan too. Then in 2011 I started getting a facial palsy and ear problems. I was diagnosed in 2012 with a cholesteatoma they told me. I had googled years before and wondered about acoustic neuroma which take years to grow and bppv/vertical nystagmus can be a symptom and I swear they were all related but maybe I am wrong....who knows.

It was a benign tumour which was very close to my brain. I was operated on in 2013 and things went well altho I am left with some palsy to my eye/mouth.