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hi does anyone get vertigo?

409 replies

sweetness86 · 27/05/2011 09:03

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

OP posts:
RichTeaAreCrap · 06/06/2011 12:36

How is everyone feeling at the moment? Anybody any better?

jjgirl · 06/06/2011 12:53

i have to say the thing that has worked the most recently is avoiding any flashing lights (christmas lights are a nightmare!!!) and flourescent lights. I go otside as much as possible in natural daylight.

id take me a long time to work out wha the triggers were. also forgot to mentio that part of the problem results from TBI from a RTA abot 10 years ago.

RichTeaAreCrap · 06/06/2011 20:15

Glad you have managed to find something that works for you jjgirl. I can't seem to find a trigger at all. Its all so random.

essexgirl31 · 08/06/2011 20:56

Hi Sweetness86 and everyone

I am so pleased I found this - I don't feel so alone in my dizzy world.

I have had Labyrinthitis for 22 months. I have random dizzy spells. I hate lighting in shops - they make me want to sit down. I also constantly walk to the right. If I am sitting I have to lean on my hand as I feel like I am going to fall off the chair. My world looks really surreal too. I sound mad!!

I have found myself (eventually) under the care of an ENT doctor who specialises in balance disorders. He had to fight for me to be seen by a neurophysio who who also specialises in balacnce (stupid politics of living in Essex but being referred to an East London Hospital) I have seen the physio twice so far. She has given me personalised exercises - some like VRT. I am so hoping it helps. MRI and balance tests are all normal

I have 2 DSs - DS1 3.10 and DS2 who is 2. I feel like a terrible mother as I have to be very selective where I take them. The anxiety that goes with this is so so awful. My mobile is attached to me as I have such a fear of falling. Every morning I wake up with a knot in my stomach wondering what my day will be like. Everthing I do is an effort - but I do it. I have to for my DSs. I too feel teary a lot of the time.

On a more positive note I have a had a few good days recently - I have never had this before - it felt brilliant. I am not now but I am hoping that the fact I have is a positive sign.

I have rambled. I apologise. It's good to know there are others out there -not that I would wish this on anyone. It is horrid.

jjgirl · 10/06/2011 12:12

i have to say that the anxiety that went with it was awful. like you eg31 i had severe anxiety about taking my son outside with me. we lived in a nice small town with medieval town centre and cobble stones were very difficult especially in the winter.

i did not really get the sevre anxiety until about a year into having the vertigo. i have managed to work on that and it is a lot better now but i still cant leave the house with out the phone and a bag of supplies etc. also planning where i am going and what i am doing etc.

RTAC you might have to work a bit more to find a trigger for it, it took me about 9 months to figure out the lights where the big problem. If it really is an ear problem then it may not have an external trigger.

RichTeaAreCrap · 10/06/2011 16:20

Hi essexgirl, so sorry you are suffering with this too, it really is awful.

the anxiety is awful too, I spent a lot of yesterday in tears because I was having a particularly bad day. I just can't do anything when it is bad, so I admire you for being able to do some things with your dc's. I have been given diazepam for when my anxiety is so bad - I tend to take it just when I need it, sometimes at night if i can't sleep and it does tend to help.

Are you on any medication for it?

Well I have had an interesting day. This morning the dizziness had eased off a little. Because of this I started to do some work and forgot to take my Serc tablet. I am supposed to take 3 a day. I still haven't taken any (2nd one is due about now) and I am still not quite as dizzy as normal. Surely the tablets to ease it weren't making it worse? I have been taking them for about 7 months. We will see.

I am at the dizzy clinic next week for my ENG tests so will see what they say too. I am thinking it could be migraine related, although after talking to my gp he thinks it would be unusual for me to be dizzy everyday if it is as that would mean that I am having migraines everyday without the headache, just the dizziness. I do feel some faint ringing in my ears though so I just dont know.

I will let you know if I get any answers next week. I am dreading the tests because they are supposed to make you feel even more dizzy for a period of time. Anyone who has this awful dizziness will know how much that is dreaded!

essexgirl31 · 17/06/2011 18:00

Hi RTAC and jjgirl,

Thank you so much for your replies. Sorry for the delay in replying - I have been on holiday. I was really anxious before I went but it actually turned out ok. The dizziness wasn't too bad. I was always with people which helped the anxiety.

I had the the most awful dizziness when paddling in the sea - the wave movements were the worst trigger ever. I won't be doing that again!! I also went on a cliff railway which made me feel quite bad. Not sure what I was thinking going on that!!

I am not on any medication for my anxiety apart from using rescue remedy. I have been so near to asking the GP for some but I really want to avoid it as I am scared it may make me feel worse.

RTAC - I had the dizziness tests a few weeks back. The were hard to go through but not as bad as I thought. I felt awful afterwards but by that evening I was back to a normal level of dizziness. I think mental exhaustion played a part in it too. I kept telling myself that I had to do it and that it will help if they find a problem. Mine all came back normal which they said is good as they could work with that.

I hope your tests went ok. Do let me know if you get a chance

RichTeaAreCrap · 18/06/2011 19:44

Hi essexgirl

Glad your holiday went went well and you didnt suffer too much, although the cliff railway sounds awful!

I had the tests, it was horrible when they squirted my ears with water, horrendous attack of dizzies then. Anyway, they have found that I don't have any ear problem so it isnt that making me dizzy. They think it could be migraine related, and I think it may also be a possibility that it could be neck, but who knows. Nobody seems to have a clue. I am not taking any medication for the dizziness at all now, nothing seems to help. I will wait for my follow up with ENT specialist to see where I go from here.

My dizziness gives me a lot of pressure up the back of my neck/head. I dont feel like the room is spinning, more like I am spinning and about to pass out. Is yours like that?

Grockle · 18/06/2011 19:57

Yes, I get it. At the moment, pretty frequently but not badly - I have it most days on and off. It varies from swaying slightly when I stand up & feeling a bit nauseous to having to lie down and hold on. Stugeron doesn't help but prochloro(whatever it is) helps with the nausea.

I haven't bothered going back to the dr - last time I went, the locum said it might be depression Hmm. I hate feeling like this - it's exhausting. My GP was quite good when I first mentioned it though - did an ECG & blood tests (which came back fine) to rule something out. I should go back really...

essexgirl31 · 19/06/2011 16:01

That test is so awful. Apparently it is a good thing that you feel dizzy with it. I cannot remember why - I felt pretty bad at the end of the tests and can't remember what the technician said!! My ENT doctor mentioned migraines to me at some point although he hasn't since. I do remember him saying if my dizziness was caused by migraines then there is medication they could give.

When are you seeing you Specialist again - I hope it's not to long away. My next appointment is in September - this was arranged to give the neurophysio a chance to work her magic. I'm still doing my excercises every day like a good patient.

I've had a rough day today which has been hard. It has followed another good few days so I could be feeling worse than it actually is. I feel the same as you - it's me spinning not the room. I get pressure in my ears sometimes rather than my neck and head. My neck is stiff a lot of the time from trying not to move too much!

Hi Grockle. I had to keep going back to the GP. I eventually got a referral to a specialist and I really think he his helping. I would say go back if you can. Can you see a different GP?

Sorry for rambling!

enidroach · 19/06/2011 18:19

I too have had this for 15 years now! I remember how scary it was early on , especially when your Dc are very small. It took a long time to get an ent referral - had to get a locum to refer me as my GP just kept saying it was "all in my head", een though I had labrythitis - he even refused to prescribe me the SERC the ENT consultant recommended and I had to but it under a private prescrption! GP's are lousy with dizziness - ENT's are too mostly if the results of the bloods and MRI etc are normal.
After the first 4 years I was "discharged" from my the hospital (twice yearly hearing check) as my hearing was not deterirating too badly - I had always been told I had Menieres, but at my last appointment the consultant said he thought I had endolymphatic hydrops (basically Menieres without the hearing loss) but said that there was an outside chance it was perhaps Migraine equivalent (now called migaraine associated dizziness MAV). Most specialists now think most menieres and vertigo is migraine related and can be traced back to childhood motion sickness, head trauma, meningitis, panic attacks, teenage migraine etc.

Last year I was referred back to the hospital as I started to have crippling headaches (on top of the dizziness, spacey feeling, full ears etc) and found the consultant very dismissive - he discharged me as I had "not fallen over" lately. He also said it was probably hormonal as I near my menopause.

Do not despair though - I have met people for whom things have compeletely cleared up who had BPV or residual problems from labs and some for whom Serc or migraine medication has worked.

I found this book helpful www.amazon.co.uk/s/ref=nb_sb_ss_c_1_18?url=search-alias%3Dstripbooks&field-keywords=heal+your+headache&sprefix=heal+your+headache

I am amazed so many people have come on here with their long experiences (only met people on dizzy forums before for whom it seems to clear up) I have felt such a weirdo/outcast over the years - my DP is quite dismissive/tight lipped about it and my family call it "your weird ear thing". My 84 year old MIL recently had a few dizzy turns and was told she may have Menieres - my Dp said but thats what enid has had all these years and she said "no she can't have , its awful - she just has psychosomatic problems!" It is hard because people think you look fine but inside your head you aren't and its tiring.

Does anyonelse have bad problems with the feelings of fullness and pressure in their ears?? all the time - sometimes worse, sometimes better?

OP I hope you start to feel better - cut out caffeine, avoid the sun and flourescent tubes, wear sunglasses and get plenty of rest and water and try the migraine diet (see book rec) and push for another referral or perhaps go private for an inital consultation(i did this while waiting for an appointment and was taken much more seriously and in fact bumped up the queue). Good luck

Grockle · 19/06/2011 18:56

I don't have ear problem apart from deafening tinitus but I do sometimes get pressure in my head - it feels as though someone has inflated a balloon up inside my skull. No idea what that's about. It's a new thing.

enidroach · 19/06/2011 19:04

Grockle -I get "electronic" noises but not constant tinnitus - which must be horrendous for you. I ofetn wish I could pull off my ears and sometimes try to go to sleep early just to stop the pressure ache and buzzing.

Its strange the way things mutate over time.

Apologies for my earlier post and its numerous spelling errors - not feeling very focused today.

Grockle · 19/06/2011 19:20

It's horrible. I find myself putting my hands over my ears to stop the noise, only to remember that the noise is inside my head, not outside and I can't block it out. This is all making me lose my mind!

Feel better, enid

RichTeaAreCrap · 19/06/2011 23:57

Enid, that's awful, feeling like this for so long. Thanks for all your tips on managing this, it is very hard.

I get some tinnitus, but not everyday and not too bad. I get pressure in my neck and up the back of my head.

I am waiting for an appointment to see a specialist again to get a full report from my balance tests - I am hoping it wont be too long, but you never know with the waiting lists. Apparently if I do have MAV (migraine dizziness) I can take medication to help it. I have to wait for the report from my tests to come through though.

I agree, people don't understand because you look 'normal' and they can't see the illness. I spend all day with my hand under my chin trying to steady my head (it doesnt help at all, its just in my mind that I should do that!!).

I hope you are all feeling better soon.

essexgirl31 · 20/06/2011 18:49

Just a quick response - had a terrible dizzy day today. I just want it to go!

I will reply properly tomorrow.

Keep well

Grockle · 20/06/2011 18:57

Hope you feel better in the morning, essex. I am shattered from all of this. Just so very very tired. I want to feel bright and sparky and not drunk all the time. I resent feeling completely wasted when all I've had in months is a nice cup of tea.

feedthegoat · 20/06/2011 19:07

I'm another one to add to the list of many sufferers on here. I had no idea there were so many!

My story is similar to so may of the others on here. I was diagnosed with labyrinthitis last September after having a really acute dizzy spell where I had to get on the floor in middle of ds's new reception class Sad. the first couple of months were hell and I ended up also having panic attacks as I found it so hard struggling to carry on working and taking ds to school when I could barely walk.

It has eventually settled into a kind of drunk feeling. I also sometimes feel like I'm getting electric shocks inside my head.

I did eventually get a referral to ENT but he basically said it would go eventually but could take months and would just have to wait. He also wanted me to stop the Betahistine I was on, which I did a few months ago. It didn't seem to make any difference. I was taking propranolol for the panic attacks too but I am on my last week of those this week as I'm getting fed up of all the drugs and just want to see if getting off them all can get me back to myself. I did ask if it could be hormonal as I got an acute attack every month during my period. ENT said there could be a link. I am now tricycling on the pill (as I have also been diagnosed with endometriosis this year) and haven't had an acute attack since.

It is hard to deal with isn't it?

clemetteattlee · 20/06/2011 19:27

This has just started for me. 3 weeks of dizziness but no vertigo/ear problems etc. I am signed off work as I am ambulance crew and I can't drive or guarantee I can perform life-saving procedures.
I am seeing th GP tomorrow and hoping for an ENT referral.

Grockle · 20/06/2011 19:40

Let us know how it goes, Clemette... I am the only minibus driver at work and twice recently, I've had to say I couldn't drive which meant the kids couldn't go on their trip Sad.

clemetteattlee · 20/06/2011 19:46

I feel guilty being off work because I can function at a basic level, but I can't do my job Sad

Grockle · 20/06/2011 20:35

It's awful. I had a day off several weeks ago because I couldn't stand up in the morning. I got in the bath and couldnt get out again. By 11, I decided I should try getting up and hung out the washing but I felt terribly guilty that I was doing household chores yet wasn't at work. So, I've been going to work when I probably shouldn't - I go, I muddle through and rely heavily on other people to be supportive.

RichTeaAreCrap · 20/06/2011 21:23

I have also stopped the Betahistine feedthegoat and it hasn't made any difference to me. Apparently it is more likely to work if it is an ear problem making you dizzy, that is what its designed for. Mine is looking like it isn't so it explains why they didn't help much.

I don't know how you are managing to work Grockle. I am working from home but I really couldn't physically get into work when I am bad with it, which is most of the time Sad

Grockle · 20/06/2011 21:46

I'm barely managing Sad and I think that struggling through is not helping at all.

I tend to think that if I am able to drive my car, I am able to go to work. Which, actually, is not right because I often get to work and feel so sick and spacey and dizzy that I can barely function. But because no-one can see that I am not right (although there are often comments about me looking pale/ wobbly etc) I feel I should be there. I work with someone who has a great deal of time off (less than 60% attendance at work this year) and I see how hard it is on everyone when someone is absent and I'd hate to be the cause of that. But really, I should stay home some days.

I will go back to the GP soon.

RichTeaAreCrap · 20/06/2011 22:09

You should go back to GP Grockle, just keep pushing them. That's what I am doing - I won't/can't accept that I will feel like this forever, they have to do something to help.