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Original poster

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 · 11/07/2011 19:49

Thanks so much Nigella, I got your PM and replied.

essexgirl31 · 13/07/2011 05:22

Hi all,

So sorry so many of us are struggling.

RTAC - keep pushing for a different referral. My first ENT Dr discharged me so I wne t back to the GP. The 2nd one specialises in balance and referred me to the physio which I swear is working. I get some good days now which I had not had for 22 months.

It's so hard isn't it? I just want a normal life. Despite having good days I sometimes believe that I will have to live with this forever.

RichTeaAreCrap · 13/07/2011 10:50

Hi essexgirl, I am glad to hear the physio is working for you and I really hope it continues to help and you can get rid of this awful illness.

I am going to try the migraine medication and am hoping that works for me. Then I will try and see the specialist that Nigella mentioned.

It is hard, I am the same I just think that I will have this forever and that is a very frightening thought.

hollygolightlyandcat · 13/07/2011 11:11

hi essexgirl
I'm in a really similar situation to you. Been ill for 18 months, at my worse I spent most of the day lying down as I couldnt even sit up as the dizziness and difficulty focussing my eyes was so bad. I have seen a massive improvement with dizziness and, on a good day, can even walk for over 1/2 hour now (albeit with something to hold onto) and I believe the improvement is purely down to physio.
I really struggle though when I have bad spells, as they last weeks and happen quite frequently and like some others on here I wonder whether I ever will get well enough to have a normal life back. I also get extremely frustrated with feeling so ill which I find the hardest thing to deal with. However, whilst I know I will always have flare ups and problems with dizziness, I do think I will get better eventually.

essexgirl31 · 13/07/2011 21:39

Thank you for your kind messages.

Yes Hollygo I think we are quite similar. My ENT said I would get better although it might take time. Fingers crossed.

RTAC - you should give them a try. Anything is worth a go.

I have a physio appointment tomorrow. Will let you know how it goes

Have a non dizzy Thursday

Grockle · 13/07/2011 23:48

Hoping people are ok. I'm having a really good spell although the tinnitus is frustrating. It's so loud. And squealy!

essexgirl31 · 14/07/2011 19:14

That's good to hear Grockle - though not the tinnitus obviously!

Had a really positive appointment with the physio today - she said that I am at a really sensitive stage in my balance rehab so to expect ups and downs and it is still early days She also said that in a few months I'll be looking back wondering what this was all about Grin. I can't quite believe I heard those words after 23 months of such agony. She has set me some exercises that make me feel awful but I know it worth doing them.

I really hope you don't think I'm bragging or rubbing it in I just want to you all to know there is hope. I wish all us better and normal lives again

essexgirl31 · 14/07/2011 19:14
  • all of us Blush
WannabeNigella · 14/07/2011 20:44

Hi essexgirl, can I ask where you found a physiology that dealt with this? Were you referred Your Doctor? I'm tempted to try it but not sure I should mess unless I get the ok from my consultant.

RichTeaAreCrap · 14/07/2011 21:00

that's great news essexgirl, I really hope it is the start of the end of this for you.

Do they think yours is an ear issue? Is that how the physio is helping? Also what type of physio is it?

Hope you have all had a non spinning thursday!

Grockle · 14/07/2011 21:08

Great news, Essex Smile

Do you all manage to hold down a job with this? When I'm ok, I'm ok but when I'm bad, it's awful. I feel terrible when I go to work yet feel too guilty to stay at home since there is nothing obvious wrong with me. Apart from clinging to the walls in the corridors so I don't fall over when I walk Grin

WannabeNigella · 14/07/2011 21:27

Damn iPad auto correct! I meant Physio obviously!

RichTeaAreCrap · 15/07/2011 19:33

Hi Grockle - I am just about holding down a job. I have been working from home for months because I cant manage to do anything else. Its all coming to a head now though so not sure what will happen in future.

I got the meds off gp today - I am going to start them on Monday. Please let them work.

essexgirl31 · 15/07/2011 20:13

Hi all,

WannabeNigella - I got my physio referral through my ENT Dr. He specialises in balance disorders and so does the physio. She is neurophysio so looks after people who have had head injuries/strokes etc. Lots of these people have balance issues and as result of that her job now incorporates people like me. She has a waiting list of 6 months. He is the 2nd ENT Dr I have seen - the first one discharged me really quickly.

The exercises are awful - lots of moving my head from side to side, balancing with my eyes closed, following objects. They induce my dizziness, The idea is to retrain the communication between my ears, eyes and legs. I really think they are working.

Both the Dr and the physio think it is an ear problem. They did mention migraine related problems once but never again.

I do work. Only 2 days a week. It can be a real struggle sometimes. I'm not quite sure how I do it. I don't quite cling to the walls but I always walk to the right of them and almost touch them! I think I have said this before - I'm sure people must think I am drunk!

RTAC - I hope they do too.

Sorry for the essay!

RichTeaAreCrap · 16/07/2011 11:31

I've had a rotten night. I went to bed not too dizzy but as soon as I put my head on the pillow to try and sleep everything was kind of spinning - exactly how you feel when you are drunk.

This went on for about 3 hours until I finally fell asleep. Does anyone else get this at night when they try and sleep?

essexgirl31 · 16/07/2011 12:26

RTAC - you poor thing. I don't get this - going to bed is a relief for me. Lots of sympathy your way.

How are you feeling today?

RichTeaAreCrap · 16/07/2011 12:52

thanks essexgirl. Well today I have another weird thing, my eye is twitching constantly and I am still dizzy.

feedthegoat · 16/07/2011 13:05

That is exactly what I get RTAC. It's awful isn't it?

When I am having good days that is my only symptom that still appears. I am more used to it now so only have the odd night when I can't keep my panic under control.

Unfortunately I have had a rubbish week but was expecting it as it is my pill free week so have a combination of horrible cramps and dizziness. Get to start my new pack tommorrow thhough so at least I don't have to face it again for 9 weeks!

I had a rubbish night last night with 4 hours sleep. It is 1st time it has happened in weeks but I think I just let panic set in as I'd let housework go this week due to feeling crap. Obviously that was cue for estate agent to ring with someone wanting to view today! Grrr! Just felt like I had a mountain to climb. Dh has mucked in though and we are done and waiting for them now.

I hope you have a better night tonight RTAC.

RichTeaAreCrap · 16/07/2011 15:44

It is awful feedthegoat and I am sorry you get it too. What do you do to ease it or to fall asleep? I agree with the panic setting in, you try and sleep and cant then start to panic about things and it gets worse.

Sorry you have had a crap week, roll on tomorrow when you are free of it again.

I've just managed to have a bath - havent been able to move much at all today due to being dizzy but had a bath now and feel a bit better.

Grockle · 16/07/2011 18:39

It's is such an awful feeling. At least when you are drunk, you know it'll pass.

I have had it at bedtime but not often and also during sex.

I don't understand why it comes in phases - I've been pretty well for about 3 weeks now but had an awful month before that. I always feel anxious because I'm constantly worrying it'll start again. If I knew what caused it or how to make it stop, I wouldn't feel so panicky about it.

feedthegoat · 16/07/2011 22:31

As it has happened every night since about mid september I am getting used to it.

As long as I can keep the panic under control I do manage to fall asleep now. The first couple of months were the worst, I basically slept on alternate nights when utter exhaustion took over. It is thankfully not the norm now for me to really struggle with sleep. It only happens once or twice a month now. I call it 'the fear' now when I lay down and reach that point where I feel like I can hear my heart pounding actually in my head!

The worst bit is when dh gets into bed. He isn't huge or anything but even that slight give in the mattress makes me feel like I'm lurching forwards and seems to go on forever! I think if you are tired your symptoms are so much worse too. But you do get used to the night spinning, even if it does take a while.

RichTeaAreCrap · 17/07/2011 10:44

well last night I started panicking about going to bed because I didnt want it all to start again. I took a diazepam and it was fine, I got to sleep quickly and didnt spin.

feedthegoat · 17/07/2011 13:08

Glad you had a good night RTAC.

The trick is not letting panic take hold. I know it is easier said than done though! I tend to find I am panicky the next night too as you go to bed anticipating trouble!

RichTeaAreCrap · 17/07/2011 14:24

that's exactly it feedthegoat - you go to bed remembering how bad the night before was and anticipate another bad night which then sets you off again! I panic without even realise I am panicking - I can just hear my heartbeat through my head when I put it on the pillow.

essexgirl31 · 17/07/2011 17:46

Pleased you has a good night RTAC. The panic is awful isn't it? Even on my good days I am so close to it.

Hard day today - went for brunch at a friends. Sat down at the table concentrating on converstion and my DSs was a mission. Quite a wobbly, dizzy experience.