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hi does anyone get vertigo?

(409 Posts)
sweetness86 Fri 27-May-11 09:03:00

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 sad

sweetness86 Fri 27-May-11 11:34:06

anyone ?

rollerskateskinny Fri 27-May-11 12:57:40

Oh gosh that sounds terrible! I have suffered occasionally and it is horrible, especially when you have to go to work, which I have only had to do once thankfully.

I have no idea how you are managing after all these months, does it actually make you throw up?

One thing I do if I have an attack is concentrate on a fixed point (door handle, bed post or whatever) rather than let it wash over me, which just makes it worse and more likely I'll be sick.
Another thing that helps me is to keep myself dosed up with ibuprofen, I think because for me it's linked to ear infections, so the ibuprofen brings down any inflamation. (or something)

Someone recommended some sort of manouvre which the dr can do for you, I can't remember what it's called, they sort of turn your head this way and that so any particles in your ears that are causing the problem end up tucked out of the way and voilla you feel better.

I hope you get your appointment soon and some effective treatment.

shitmagnet Fri 27-May-11 13:03:48

Yes, I was recently dx with vestibular migraine. It has gone now, after a couple of months, but can go on for years in some people. It was the worst time of my life, and that is saying something (ref nickname wink).

Labyrinthitis was rules out, as was vestibular neuritis (had all the tests, mri, caloric, hearing, etc). My left ear was responding the opposite of what it should have, hence the "seasickness" and violent nausea. Saw a top neuro-otologist, and finally got a dx. He said there is a drug that is very effective (80%) at treating VB (sorry I can't remember the name, a neuro will know if you see one), and if it happens again he wants to try me on it. I also get classic migraine with aura.

Poor you. God knows how you have survived this long, living a half life like that. Which tests have you had?

Acekicker Fri 27-May-11 13:55:35

Have you asked about VRT

I had it following a vicious bout of labyrinthitis - the balance/dizziness persisted for months. It worked really well and was the thing that enabled me to get back to working full time, driving etc - I couldn't do any of those things before then as the dizziness used to come on, apparently when the therapist discharged me she said that she'd noted on my first visit that I could barely walk in a straight line. It worked the same as physio in that you go and have a session, get given exercises to do at home, do them, go back, another session, more exercises etc.

ginger55 Fri 27-May-11 14:02:19

Don't take no for an answer - I'd definitely get a second opinion - even go to one of those walk-in clinics - I'm a firm believer that if an ailment is effecting your everyday life - be a nuisense!

sweetness86 Fri 27-May-11 17:24:32

Hi guys thanks for response all I can see is Im a trooper lol I know someone who had it at 19 and shes 29 and still dizzy all the time :/
I have had all the tests caloric , rotary chair, ENG, Hearing test and MRI .
I was supposed to have vest rehab but their isnt anyone in my area so it just got brushed under the carpet. The GPs do not help they are useless when it comes to dizziness!
I have had the epley manouver a few times it helps for a bit but the dizziness never goes away 100% GP just said learn to live with it! Im only 24 FFS ! Something is causing it they cant just leave me like this .

I wish my family could just feel how I feel for a few hours sometimes coz its no plain sailing and sometimes Im at work just holding onto the table feeling like I will fall. I had balance tests and my balance and hearing is perfect they are at a loss I think but I do get tinnitus. It started one morning nearly two years ago now it was terrible I couldnt walk or anything and although its better than it was its still there and I feel like crying a lot but people say just get on with life and deal with it easy for them though!

turkeyboots Fri 27-May-11 18:06:46

I have Meneiere's disease without hearing loss, its unusual but not unheard of. The usual cocktail of Menerie's disease drugs controls it fairly well, but a bad dizzy spell is awful and you have my sympathies. I'm not dizzy all the time though.

Might be worth looking at the Meniere's society website of coping tatics? - http://www.menieres.org.uk/about_menieres_disease.html

sweetness86 Fri 27-May-11 18:40:06

Hi Turkey what meds do you take ? Thanks for reply.

turkeyboots Fri 27-May-11 18:59:00

Serc - which is anti-sickness (trade name is something like propchloraperazine) but have a glass of wine and can't spell big long chemical names. Taken as needed, so 3 time a day some days and nothing other days.

Betahistine - 3 times a day, the one seems to control the dizziness for all but major episodes, but takes a while to kick in (2-3 weeks)

And they recommend avoiding salt (so mainly processed foods, cured meat, shop bought breads etc), alcohol, and caffeine. I find avoiding salt and minimising the other 2 work for me. Can tell when my salt levels have increased and I pay for it with increased dizziness.

And simple balance exercises can help - here

Hope this helps.

turkeyboots Fri 27-May-11 19:00:48

Sorry - Serc is the brand name for betahistine. Stematil is the other one.

And if is is Meneire's a diuretic medicne can help too.

herbietea Fri 27-May-11 19:08:24

Message withdrawn

sweetness86 Fri 27-May-11 19:45:14

Thanks everyone it helps to know others get it too , Herbietea do you feel it has improved at all over time? I know MD is progressive though.
I havent tried serc I do have sturgeon in the cupboard but get scared to take that too it case Im dopey .

MoreBeta Fri 27-May-11 21:21:58

sweetness (and everyone else) - I am so sorry you are going through this. I know this condition is really totally debilitating and life changing. My poor DW has suffered from vertigo since 1992 and reading all the posts on the thread is like they are written by her. She more recently has begun to get migraine attacks which may or may not be related.

She has had all the tests and all the drugs you have all listed along with the special manouvre and various excercises. None have worked. It is not clear if she has Menieres or BPV and in the early days when she was still working in a high pressure job she too felt total despair. Since then we have had two children and she now works at home and does one day a week university lecturing and have a happy life. She said to me today though that she definitely feels she could not go back to a high pressure job.

It happened suddenly one day to my wife. She was sat at a desk in our lounge doing some writing I heard a crash and came running in from the kitchen to find her slumped on the floor unable to stand. She had literally suddenly lost all her balance and fallen off the chair. She has not had a day since when she has not been dizzy. It gets worse with stress, if she is tired or if she has an upset stomach. It gets slightly better with a few drinks and then worse as she drinks more.

Every few years she has a sudden acute attack that makes her fall like a log and smacks her head on a pavement or whatever she is near. Her balance is then very bad for a few weeks and gradually improves a bit but it happens without warning and she cannot drive for this reason. If we go to see a film she has to hold on to me very tightly as we walk nto the darkened cinema as she use her eyes to balance with and she can't do that in the dark. She also finds it difficult to work and use computers for long periods because sitting still reading long horizontal lines of text on a screen while trying to balance with her eyes is very tiring so she has to do it in short bursts and also finds getting up and moving around helps.

My only sound advice is to begin to think about how you can redesign your home and work life to take the pressure off yourself. Changing career and working from home is the main way my wife has found a good quality of life.

sweetness86 Fri 27-May-11 21:48:28

Hi So sorry about your wife from what you describe she is getting drop attacks which is v. common in menieres disease I think if she saw a ENT now that would probably what they diagnose drop attacks are a main but quite rare symptom in MD.
Im glad she has a good quality of life now how does she handle airplanes? or going abroad Im scared to try it sad
I wish I could work from home but dont think I ever could if I had the money I would start my own business so I could make it possible. I only work part time but its still hard as I tend to feel worse at work with lighting and patterns and computer work all day I get home and feel drunk .
Im not going to stop trying to get semi normal if I can I just dont feel I can live a fulfilled life this way. Thanks for replying .

MoreBeta Fri 27-May-11 22:00:13

Flying is fine for DW as it has no real effect on her. I am always with her but we really just go somewhere sunny and lay on sunbeds in a hotel complex, go for short walks or a taxi ride.

Strip lighting, dim lighting, patterns and computers affect DW badly like you.

sweetness86 Fri 27-May-11 22:22:49

Yeah fluorscent lighting is the enemy and I have a whole 8 hours under it tommorrow Great!

MoreBeta Fri 27-May-11 22:29:49

If you can establish whether it is Menieres and utterly desperate you may consider an operation called Saccus Decompression which I had never heard of - but it has risks.

The Menieres Society website talks extensively about self management of the condition which is the route DW has chosen.

RichTeaAreCrap Sat 28-May-11 08:09:26

Op I can totally sympathise with you. I have been suffering for 8 months now with this.

I got a bad cold last year and halfway through it I was out one day and had an awful dizzy attack - I couldn't do a thing. I didn't fall over but was unsteady and really sick. At the time I was told I had labrynthitis or some problem with inner ear. Since then I have been dizzy ever since. I seem to get it worse if I sit with my hand under my chin (pressing on jaw/ear). I have had an MRI of brain that was clear, been checked at the dentist, its not a jaw issue, been to ENT, had hearing tests too and they don't think its anything with ears. I've had every blood test you can imagine. The last thing they said was that it may be migraine related but I get it every single day for long periods of time - sometimes all day. Some nights I can't sleep because I feel drunk in bed. I seem to get this pressure rising up the back of my neck/head when I get it too.

I haven't been able to work, have had to cancel a holiday, can't plan to do anything, can't drive - I have no life at all at the moment and haven't had for months. It has taken over my life. The doctor said it could be anxiety, but I am not anxious about anything apart from what is wrong with me. I am now getting quite depressed with it all and terrified of the prospect of living with this.

My next step is to go to the ENT dizzy testing in a week or so. I am praying they find something, although they are not convinced that it is ENT related. The gp's are not very good with dizziness and just seem to pass it off as 'we don't know what it is, live with it etc' but I can't live with it. It is affecting me so much and also my DP as I cannot do anything or go anywhere without him.

I have never had this in my life before and its awful. I feel for you so much for suffering with it too and I really hope you get to the bottom of it soon.

sweetness86 Sat 28-May-11 08:38:37

Anxiety card Ive had GPs play that with me yes I am anxious coz im dizzy 24/7 but dizziness came first.
Have you had a caloric test? That tests your vest function most ENTs do this as standard a simple hearing tests tells them nothing. The best person to see is a neuro-otlogist as they specialise in just dizziness and a bit of neuro-logy its quite hard to see one though their arent many where do you live? Inbox me if you want be good to talk to someone.

deepbreath Sat 28-May-11 12:12:14

Thank you so much for starting this thread, I don't know why I am having problems with dizziness yet. I am seeing a neurologist as I have other symptoms elsewhere, and until recently I had times when I was a bit dizzy. I've got to have all my tests, scans etc. repeated later this year but have largely been left to get on with things myself (or not).
The last few weeks have been especially bad. I get pressure in the back of my head, and sometimes in my ear. I have noticed some dullness with my hearing too, but that isn't constant. I have been falling over and staggering about like a drunk (and was tutted at by a pensioner).

The neurologist prescribed Betahistine for me to try, which I started taking last weekend. It seemed to trigger the mother and father of all migraines, so I had to stop taking it. I have spent the last couple of days trying to find anything that could help me. I am unable to work anyway because of other health problems, and it's a good job really as my brain doesn't seem to want to work properly at the moment.

tryingtoleave Sat 28-May-11 12:29:46

Gosh - you poor things! I've had labyrinthitis ( I think) for three or four months now, but it has been fairly low level most of the time. It started with a spinning attack and then sort of settled down so I wasn't sure ifnthere was anything really wrong with me or if I was being a crazy hypochondriac, or having panic attacks or whatever. Then it got so much worse that I went to doctor and had an MRI ( as I have a scarey family history). It has settled down again now - it takes me by surprise every now and then when I feel that I'm falling - but it was awful at its worst and so hard to explain to anyone. I hope you all get better soon.

I was interested in the pp who said it was a vestibular migraine in their case. Can it be a migraine if it continues for a long time? I also get migraines with aura ( no pain but lots of neurological symptoms) and when I got that first spinning attack I thought it was a migraine.

jjgirl Sat 28-May-11 12:41:23

i have vestibular migraine. it came on as you describe. no migraine pain at first but constant 24/7 vertigo.that eased off after about 7-8 months and the awful 72 hour migraines rolled in several times a week.

have narrowed down the cause after seeing mr Savundra?cant remember how to sepell his name at the Portland Hospital in London. not sure how you see him privately. yes i had all the tests mentioned and nothing could be found except severe balance problems as i use nothng but my sight for balance.

main causes for me are any flashing lights, yes christmas is/was a nightmare also fluro or artifical lights. yes they flicker even if you cant see it.

cure for me was moving to rural Australia where i spend most of every day and all weekend out in natural sunlight. almost 100% better now after 3 years of living hell.

RichTeaAreCrap Sat 28-May-11 18:29:51

Hi Sweetness, I haven't seen a neuro-otlogist yet but have been to a neurologist. It is awful. I am taking Betahistine for the dizziness but it doesn't seem to do much to help me. I am going for all my vestibular tests in a couple of weeks, but they are not convinced they will find anything. They have to though, this can't just be nothing, something has caused it for me to be dizzy all the time. Have you seen a neuro-otlogist? Where are you based? I will pm you soon - feel free to pm me to if you need to chat about it.

JJgirl - what do they do to treat your vestibular migraine? Have you stopped being dizzy now? How can you be dizzy 24/7 with migraine - does that mean I have migraine every single day? How bloody awful.

It is so awful and I can't live with this for much longer, it has taken over my life.

So sorry for all of you that are suffering with this hell.

sweetness86 Sat 28-May-11 18:59:45

wow didnt expect much response to this thread but vhappy i have! I was told by my neuro-otlogist my brain is having a constant migraine i question this though. I know some neuro-tologists if you want their details o saw professor luxon in london .

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