Off kilter all day...so fed up and worried 😩

Im glad I've not got true Vertigo as in spinning since day one but I'm certainly not right yet! My confidence is shot to hell and I've had to take myself off google and Vertigo forums as they just put me into major panic mode. I'm waiting on MRI scan appointment and ENT appointment. Dr has said this may well go away by itself (its needs to hurry up lol). I hope the therapy works for you...lots of luck 🍀

I'm definitely going for the MRI, just waiting for the appointment through the post. Then it's a wait for ENT.

Your Drs don't sound much help do they!

Thankfully I'm managing work but my lad is having to drive me there and pick me up because the walk which I usually do is over 2 mile each way, a bit far when you are off kilter and anxious. Im just praying this goes away....it's hard enough been a working single parent with no support, so this is just vile 😶

The MRI kinda sucks. I had knee MRI's before. Just boring. They put you in head first. Omg that thing was loud. Even with ear plugs in it was crazy loud. First they put in a IV needle and took blood. With me they did inner ear slices first. Then brain scan. While waiting on blood work to come back. When she had that done the blood work was back. She injected contrast dye and did brain MRI with contrast. They check kidney fuctions cause the dye gets filtered out threw kidneys. Whole thing took about a hour and a half maybe.

Mine is really nice.  I have had great success on doing a mnauver at home called the half-somersault.  You can get the video online if you google it.  I have to do it 3-4 times though about 30 minutes apart.  It's diffrent for everyone. BUT DO sleep elevated for 48 hours and don't bend over or look down.  That's important.  This allows the ear crystals to re-situate into place and stay there. I have had just as good of results with this as going to an ENT for an Epley. Costs nothting either. :-)

Oh blimey I just thought I'd be going in a loud tunnel....didn't know about Dye Etc 😩

the MRI is really,to rule stuff,out as,opposed to in! But yes go,for it. N a in actual fact i have learned that Catscans are better for us as they will show damage in vestibular area, much more than MRI.  ENTS do ears, nose and threat, that s it! You need a neuro,otologist who train 4 yrs more than ENT who dont study Vestibular system. I was messed about for a while year with ENT guy, so have been there and done that. A year I'll never get back. 

I totally endorse that, Gillian. My two attempts at getting this fixed by two different ENT specialists achieved nothing at all. I'm pinning my hopes on the vertigo clinic.

Dont know where you are situated, but in UK i've heard really good things about one at the Leicester Infirmary, and one in Kent

Depends on if doc orders it with contrast. It's no problem. You don't feel a thing at all. They just say drink a glass of water when you get home . Just pee it out. You don't even know they did it.

I was told a regular cat shows less. They have a different kind of Cat scan that takes a way better image. But some places don't have them. One being the hospital I go to. I would have to travel up north to get one. I went to a specialist up north. Asked if he needed one while I was up there. He told me it wasn't needed. I definitely had menieres.

I don't think I have an issue with tight spaces...I'll be anxious though. I'm sure I'll get through it ok 🤔

Had an Mri with dye few weeks ago for a diff problem I have. It's easy peasy.. it's the diet for two days before i found 'annoying'! Haha. No need to be anxious believe me. 

I live in Kent and was seen by Mr Suranthiran.  He diagnosed me with both BPPV and silent migraines and told me not to get the 2 conditions mixed up.  He told me the 2 years I spent at ENT were time wasted.  He said that due to the delay in diagnosis it would take that much longer for my brain to heal.  I was also involved in a study by the University of Kent that was being held whilst I was seeing him.  They did lots of psychological tests on me and at the end of it gave me £10 for participating which I wasn't expecting. 

Ok thank you Gillian 😀

Well the BPPV is recurring but settles down by itself once the crystals dissolve, so no treatment for that as Epley Manouvre made no difference for me.  For the silent migraines I was prescribed Nortriptyline which has reduced the visual vertigo and had to eliminate certain foods, caffeine, chocolate, chinese food, cheese and now have been told to reintroduce them gradually.  I know chocolate and cheese are a trigger if I over indulge so keep them to a minimum.  At first I thought it was all a load of rubbish but it has made a difference. I did my own exercises, like walking with one foot in front of the other with my eyes closed, very difficult but stretched my balance centres to compensate.  I was told it would take about 2 years to recover fully but I have never fully recovered but am 80% better than I was when I was crawling around on the floor and couldn't drive.

Hi Anne, I suspect the same happens to me - the crystals eventually dissolve on their own - as I've had many attacks of vertigo in my life and they've all resolved spontaneously in the end. This latest one hasn't yet, but then it's only been going for about six weeks so it's early days. Even so, it seems to be gradually improving.

Like you, I didn't benefit at all from the Epley manoeuvre the only time it was performed, 30 years ago. Symptoms persisted for at least six months after that before finally clearing up.

One thing I'd like to ask you. Did your vertigo stop suddenly or just gradually fizzle out over weeks or months? I'm intrigued by this, as in theory the crystals are either in the wrong place or they're not, so there shouldn't be any room for gradual recovery. However, every time I've ever had vertigo it's come on gradually, then disappeared gradually. Although the current acute attack seemed to start very suddenly when I got up one morning, I'd been noticing for several months previously that my usual night-time attacks of vertigo (which I've had all my life) had been waking me much more often than they normally do.

This suggests more of a metabolic cause to me, e.g. excessive formation of crystals perhaps. I'm particularly interested in this one, as I suffer from an autoimmune condition (Sjogren's syndrome) that causes, among other things, dryness of many of the body's secretions. I've tried out this idea over on the Sjogren's board and have found a couple of others who have similar episodes.

I know we have a clinical neurophysiologist lurking (very helpfully) on these boards. Eleftherios, do you have any views on this one? But don't worry, I'll still get checked out at the vertigo clinic!

Hi Lily, it started completely out of the blue, I rolled over in bed one night in 2013 and everything in my head rolled with me it seemed.  I thought I was coming down with something and went back to sleep even though it was a severe dizziness it lasted only seconds.

I had a head injury 20 years ago on that side of my head, and my left ear is the affected one, and ENT thought it might be a result of further neuro sensory damage to that side of my head/ear, as after the injury I was left with partial deafness and permanent tinnitus, I was seen at the Maudsley back then who said the head injury had caused neuro sensory damage.  I hope there is nothing new to develop after all these years.

When I get a cold or blocked nose my left ear is also affected.  It is now my weak spot.  When it first started it was at it's worst so when a few months later I started with visual vertigo I thought it was all the same thing.  The consultant has told me I have BPPV and MAV and not to get these separate conditions mixed up which was good advice as I thought it was all one condition.

One morning I got out of bed and just fell to the floor.  I had to take a month off work as couldn't walk in a straight line.  Everything worsened before it got better.  But the early days of this problem were by far the worst and now I know what I am dealing with it seems to have lessened, plus the medication for the silent mirgraines really made a difference and within a few weeks I could feel the difference.  I didn't know I was having migraines and the consultant said these had damaged my brain but it could recover.  

My left ear often feels like it is bunged up and I get BPPV every few weeks and the crystals take about 3 or 4 weeks to dissolve on their own and I notice that when I lie down the dizziness lessens over that time, but it has never been as bad as when it first started.  It started when i lie backwards in bed, last a few seconds and then goes away.  

I also have also had autoimmune disorders over the years, attacking my hair and most recently my finger nails but have not had a definite diagnosis.  Currently my body is trying to reject some of my nails and they are detaching from the nail bed.  I use to have alopecia areata when I was younger, with bald patches on and off for years, but none for the past decade, fingers crossed that's resolved itself.

Do get checked out though and get any help you can.  I have kind of resigned myself to the fact this is always going to be there to a greater or lesser degree.  When it first started I was hopeful it would disappear as mysteriously as it arrived, but time has moved on and it seems a stubborn condition.

All best wishes for a full recovery.  I think the menopause was part of the trigger though.