hi does anyone get vertigo?

[sweetness86]

hi i suffer vertigo i feel dizzy most of the day and its been like this 20months. Ive had numerous tests and im about to see a neuro again soon. I get dizzy rolling over looking down up etc and generally giddy all day some days better than others. One doctor thought i had migraine disorder one thought menieres disease but i have no hearing loss.
I dont take anything for it at all just put up with it but my life is shitty with this i havent had a drink in 18 months and have 2 young sons.
I honestly dont know how i go to work i do it for the money but somedays just want go home and cry and not wake up each morning .

Does anyone get this? what meds are you on im at my witts end

How is everybody? I hope you have all had a good few days. I have been very dizzy toay with pain down my neck and shoulder blade - I do wonder if that has something to do with it, but I did also have migraine today so that is more likely to be a trigger.

I am back for my results with the specialist this week - this is after all my balance tests so that should be interesting. I just hope they have found the cause of it and can do something to help.

Hi all,

Sorry for being awol. My internet has been rubbish again.

I've had a better few days. I'm convinced it's the exercises.

Sorry you are having a bad one RTAC. Good luck with your appointment this week

Feedthe goat - my ENT Dr did my referral. He has a neurophysio at his clinics so she initially met me there and then I went to her outpatients department. I think I read about Labyrinthitis on that site. I still go back to it when I need convincing I don' t have something else more serious!

Off to bed now. Tiredness makes it worse.

Having a bad couple of days, really severe migraine, worrying about the neurology appointment.

I'm having a really bad few days too. Very bad dizzy spells as well as having a real difficulty focussing my eyes. I cant think of any specific cause either, but my physio did say it would flair up from time to time.
I've had very bad ear ache too in the affected ear which has coincided with the dizzy spells. The pain is quite far down inside my ear, does anyone else get this too?
Hope those of you who have appointments coming up get on well at them.

RTAC & holly, sorry you are feeling bad. Don't do too much, will you?

I've been quite good recently apart from a very minor 'wooshing' yesterday, after a very bad few weeks. It's a nice relief. Except that I have hurt my back at work so that's giving me grief. I feel like there's always something.

When I saw my GP, he asked if it was brief spells of dizziness or constant but I get both - I have weeks where I am more or less permanently spacey and feel like I have brain fog but I also have sudden 'wooshes' of light-headedness which make me wobble and feel drunk but that pass relatively quickly. I am sure he thinks this is all in my mind...

Sorry everyone is feeling bad. Grockle I have that feeling too - I am basically never totally "clear headed" like I used to feel before this started and my ears always ache to a greater or lesser extent (the sort of feeling you get when your ears fill up on a plane's ascent). My ENT didn't think I could be right that I felt spacey practically all the time to a greater or less extent but also had periodic bouts of the wobbles.

I had a nice day yesterday my eldest has just finished her A levels and we went into town for a shop and some lunch and then mooched along the seafront in the artists workshops and sat on the beach. But this morning - my ears feel full and I feel a bit shaky and my eyes are starting not to focus so well. I think you pay for for the good days.

In the Heal your headache book the author is appalled that at medical conferences a lot of the specialists refer to the MAV/Labs/migraineurs as "pain weasels" - whiners that they hate having to deal with. My ENT said that if my symptoms were that constant that I wouldn't be able to function but at the same time discharged me as my body had compensated so well as I rarely fell overor had the room spinning around me anymore!

I'm really sorry to hear so many are having a rough time of it at the moment. I had an awful weekend but I had a nasty sickness bug that seems to be doing the rounds at work and a nasty lengthy headache seems part and parcel. In comparison I've felt raring to go the last couple of days which is good as I have been busy.

My book arrived today and I had a quick skim read. It is interesting that he makes such links between persistant headaches, migraines and dizziness. Also mentions how often misdiagnosed with obvious conditions like labyrinthitis! I have to admit though, whilst I'm aware that my daily paracetamol habit is part of the vicious circle and absolutely not good, the thought of cutting out completely and trying to still cope with daily life terrifies me! The odd days when I've tried and ended up in bed all day vomiting with a migraine makes me wimp out. I need to steel myself before I dare!

My gram had the same thing all her life and unfortunately I have got it from her.These things are often genetic. She neglected herself and the result was that her condition became incurable. So, my advice is be really pushy with the doctors for a proper diagnosis. Even if it means consulting a private doctor to speed things along(NHS waiting lists can be really long and they waste precious time). I have this one medicine I take when I get vertigo, but my vertigo is triggered by a problem in the bone and nerves right at the back of my neck. You have to find out exactly what is causing the vertigo to be able to sort it out. Unfortunately, the treatment is entirely dependent on the cause. You might want to look into homeopathy. That is what helped my gram.
I can understand how you feel, and I really hope you get better soon:)

Hi all,

Not long back from seeing Take That. Had some very off balance dizzy moments but overall I survived - and the dizziness wasn't as bad as I thought it would be. Fantastic concert!!!

Hope everyone is ok

I've heard Take That were great - wish I could have gone to see them. Thats great you managed it and had a good time.

dancing - I was just chatting to DH last night saying I need to go back to ENT and push for a diagnosis on my ear. So many things have been mentioned - labrynthitis, menieres, viral infection, BVP, but they havent done any proper tests apart from looking at my eyes to confirm nystagmus.

Out of interest does anyone know what type of tests they can do? And any treatments?

I saw Take That last weekend! They were amazing, weren't they? Much better than I expected. And we found seats instead of having to stand so the wobbliness didn't matter.

I have my ENT appointment but have no idea what, if anything, they'll do. It's not til the end of August though so a bit of a wait.

I've developed a new habit this weekend - falling asleep. I have had to have a nap every day since Friday. No idea why I am suddenly so exhausted - maybe the back pain? I'd fed up with not feeling spritely. I'm in my 30s not my 90s ffs.

Well I had my follow up ENT Appointment. It was rubbish - basically said that my dizziness is not an ear problem so I can try the migraine tabs to see if that helps but they are discharging me because there is nothing else they can do. Great.

This weekend my dizziness has been hell. My mum is in hospital and visiting her I wanted to be in the next bed so they could do a full MOT and find out what is causing it.

Dancingwind - I agree that treatment depends on the cause, but how on earth do you find the cause if the doctors have no idea what it is? Its so hard to get this sorted out.

Oh no RTAC

I know that feeling - my colleague got carted off in an ambulance and I wanted to hop on the bed with her so they could do an MOT on me. I am sure something is not right. It's so wearing not feeling right but doctors not being able to work out what it is. It makes me feel like it's all in my head

What happens now?

I agree Grockle, something is definately not right with me to be feeling like this. I mean, what on earth triggered it and why isnt it going away?

I dont know what happens now - I might try and push for a neck/jaw scan because I feel a lot of pressure from there and it makes me wonder if there is anything there causing it.

So fed up of it all.

Hollygolightly - when I saw an ENT for my first appointment in London 15 years ago I had various tests - he checked my eyes then flicked a little bit of tissue at my iris, then examined my ears and felt around the back of neck and ears for bumps, he also hit a tuning fork and put it in the centre of my head and then at the lower back of each ear and I had to say where I heard the noise most. I think these tests can raise/discount the possibility of certain types of tumour. As a follow up on different dates I had an MRI scan, lots of blood tests - for haemoglobin (some people are just very anaemic hence the dizziness) and for C reactive protein which can be an indicator of autoimmune problems such as MS, they took 4 phials of blood not sure what the rest were for. I also had a caloric test - they pour water into your ears and see how dizzy you get (think it helps confirm if menieres adn if one particular ear is causing the problems) - this was really horrid - I was very dizzy and sick. I also had a hearing test and this was repeated every 6months or each year for 4 years to see if my hearing was deteriorating.

They thought I had menieres triggered by Labs so gave me Stemetil (motion sickness pill), a diuretic and SErc (Betahistine? - it makes the blood go faster round your body and for some people this sorts out their probs) -not for me though. I was discharged after 4 years as they said there was nothing more they could do and my body had compensated (they felt fairly well) as much as it could and there were lots of other people on the waiting list etc etc - the consultants closing remarks were that he thought I maybe did not have full blown menieres but endolymphatic hydrops with a chance I may have something called migraine equivalent.

Last year I started to get really bad headaches on top of all the other symtoms and got referred where I live now - my notes from London were not forwarded/lost and the ENT without checking me just listening to a few symptoms declared I had MAV (the new name for migraine equivalent) - he told me they would put me on the migraine diet and eventually found a single A4 sheet with a vague list of allowed and disallowed foods (useless!) I found the heal your headache book which explains the diet and followed it and it helped a little I think - when I went back for follow up appointment the ENT discharged me because "I had not fallen over lately" he also prescribed some Pizitofen which just totally zombified me. This ENT was very brusque and made me feel like some mad case.

So like the others I am back with no treatment or clear answers again.

I think because it is noy a life threaening condition and has so many random and mutating symptoms that no one wants to properly research it and not much money is spent on it - or ENT I have to say from the diliapadated state on most departments and their equipment.

Hope this helps about the tests - sorry its so long

RTAC - that is rubbish.

Have they suggested referring you to a neurologist instead? I dont know why its so difficult getting a diagnosis out of ENT. I got my diagnosis from the neurologist, but the underlying problem is my inner ear and I dont know what is wrong with it. Its very frustrating.

Crossed posts - thanks for that Javo. It sounds like I'm lucky in that I have a diagnosis for my other symptoms so I'm not worrying about them, and it is confirmed that my right inner ear is the underlying problem. I found the tablets either didnt work or did work but knocked me out too, so I dont take them at all now.
At least ENT did refer me for physio, which has been an enormous help, but I would like a diagnosis of the problem in my inner ear just so I can understand the effect it will have in the future. From everyone elses experience, I'm not all that confident that I will get one, so maybe I just need to accept that. At least my GPs and physio have all been very good too and are very sympathetic.

Hi holly, I have seen a neuro, they did a brain scan and found nothing.

Javo, have they not given you medication for MAV? They are going to try me on that next, although I am not convinced that it is that.

Hi Richtea - they gave me pizotfen for the MAV - but it totally zonked me told to take it at bedtime but was a total zombie and kept falling asleep even when I took it at 6 in the evening the next day at lunctime I would just fall into a deep sleep - hated it. The ENt discharged me with the pizotifen and told me to see GP if no joy - saw GP and he wanted to up the dose! I have 4 DC so I have to be able to be awake so stopped taking. - GP sort of washed his hands of me I think. There are other migraine medications but have not been offered them - I had a bad reaction to betablockers in my 20's so don't want to have those and don't want to take anti depressants.

ATM my headaches are not too bad and not so often but the ear pressure/ache and floaters in front of the eyes and dizziness is back worse.

has anyone had a good experience on medication?

Holly - if they have identified the right ear as the problem I don't see why they can't tell you what is likely to be the effect in the future. My ears seem to both have damage - I think the right is marginally worse - my original ENT said that if one ear had been significantly dominant then he could have given me a defo diagnosis of menieres and they would have continued to monitor my hearing.

has anyone seen an Otologist? have read that they are more specialised in the field of dizzy problems.

Richtea - I would push for a jaw scan - my mum had problems with vertigo and numbness when we were little and it turned out there was a problem with her jaw and she had a plate made to wear at bedtimes which seemed to sort it out.

Oh no javo, I hope they dont put me on that then, I cant be zonked all day.

How do you push your gp for all these tests? Mine seems reluctant - he has referred me for quite a few tests but now is set on the fact that he is sure mine is caused by anxiety - I know that it isnt - I had no anxiety at all before all this. I just need them to find the cause and quick because my life is just on hold at the moment, I cant do anything.

Hi All,
Apologies in advance for not reading all through this thread, but I wanted to quickly tell you my story and treatment plan. I'll try to keep it brief and answer any questions you might have asap.

May 2010 suffered a really bad dizzy spell lasting 6wks which was diagnosed as BPPV. It went by mid June and I had nothing for about 2 months. Then in August 2010 it came back. I saw 9 different people a mixture of GP's, ENT's and now a Neurologist. Have had an MRI scan and various other tests.

Basically I have MAV. It was diagnosed in January and I have been on Propranolol since then, initially a very low dose, 10mg 3 times a day. This got rid of it during the three weeks between my period and I just suffered with it for the week around my period. The dose was upped to 20mg 3 times a day and this controls it pretty much all of the time apart from the odd blip around period if I'm highly stressed about something else/tired etc.

I saw a Consultant privately about this problem last month, who specialises in MAV and people travel the world (literally) to see him. I found him after lots of research. He basically explained that the brain is like a jug and most people have the level around the baseline of the jug and things like foods, stress, period etc can increase the baseline and usually it goes back down but in some instances (Mine was severe stress for a period of around 18 months) the jug fills up and the level doesn't decrease and as soon as you hit the full mark the balance system gets affected and therefor vertigo hits. He has put me on the migraine diet for approx 3 months as well as Nortiptiline (spelling?). These two things combined should basically bring the jug level down, for want of a better description, then I should be able to gradually come off tabs and special diet (which is hell) and get back to normal.

I should add that I previously never suffered migraine as in headaches etc and still don't get a headache with the vertigo now but occassionally a dull ache at the back of my neck, like someone has battered me with a bat!

Hope this helps you all. I have spent a year thinking I had tumours, MS and the like so know how anxious it can make you.

Sorry for such a long post too!

Hi Nigella
Thanks for your post, its really interesting to read especially since they have told me they think its MAV.

Can I ask you if you have a link to the migraine diet. And also - who is this specialist that you see and where is he located, I'd be interested in seeing him. I am at the stage where I will try anything.

My vertigo isnt like normal vertigo where I am falling over, its more like I am spinning - I get it all the time. I do also suffer with migraines though. Interesting too about you saying you suffered more at the time of your period, I am much worse then too.

RTAC - Vertigo for me is where everything is moving around and nothing stays still. I tend to fall over because of the dizziness not vertigo. My symptoms get worse around my period too, my neuro said its quite common for hormones to affect symptoms.
Did your neuro not say what might be causing your symptoms or did he say MAV? I had a scan, which found nothing as well. But my neuro diagnosed with functional symptoms caused by my inner ear. Sorry I havent reread the thread (and my memory is shocking), but have you tried physio for the dizziness?
It may be worth a shot.

RTAC I've replied to your PM and also wanted to add that since mine came back in Aug last year it was constant with some days better than others but always there, until I started the meds.