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

Hi everyone, I hope you are all feeling a bit better today.

Well I just managed to go to the garden centre. Doesn't sound much but for me it was - I haven't been able to go anywhere for months. I got slightly dizzy while I was out and almost came home. Glad I didn't though.

Feedthegoat I can relate to that. It took me 7 years and 4 different gynae's to get my diagnosis. I used to faint every month the pain was that bad. What are they doing to help treat yours?

Tricycling on the pill at the moment richtea. When I first managed to get my gynae referral I was also suffering from general pelvic pain through the month too. A scan showed an endometriomal cyst (probably not spelt right!) but this seems to have gone since I went on pill so that is great.

I also had particularly bad vertigo attacks during my period too and they have stopped too. It hasn't stopped my pains but at least I don't have to do it so often! I'm back at hospital in november to review. Only downside is that the pill does seem to make me more headache prone.

I'm glad you managed to get out for a bit today.

Well done RTAC. That is really good. I always feel very proud of myself when I do things like that.

FTG - hope your cold is getting better. The slightest cold makes me feel so much worse.

Enjoy your Saturday night.

I tricycled the pill for a while too feedthgoat, but had to stop taking it because it was giving me migraines every other day. I then had the prostap injections for 6 months - that seemed to help. My dizziness is always so much worse during my period too.

Glad the pill is helping you a bit though, if it works for you carry on with it, there is nothing nice about having that pain all month.

Hi essexgirl, yes isn't it sad that we get proud of ourselves for being able to do the most simple thing. When did my life become this?!

Evening all

We've had a lovely weekend away - managed the drive although began to feel nauseous at the end on the way there. No dizziness though and little while we were out. I've realised that walking on uneven ground, where I have to watch where my feet are stepping is not good for me but that's useful to know!

Thankfully, I don't have painful periods very often. Mine are just really really irregular. I have a doctors appointment tomorrow so am panicking about that. I am quite sure that he'll just think I am a hypochondriac. I came up with a list of things that I feel are not quite right but I think it's just the same as most people - I just don't manage it very well:

I'm really tired all the time - am exhausted in evenings and weekends. Will go part-time at work from September to help. So tired I sometimes crawl up stairs to bed. I don?t feel better after a good sleep & wake up feel as worn out as I did the night before.

Stiff Joints, especially in morning it hurts to walk, I stumble when I get out of bed.

Aching joints (fingers, elbows, knees, hips) when very tired.

Chronic lower back pain, hips (but stress related, I think)

Frequent spells of dizziness, nausea and occasional mild but persistent headaches (2-3 days) & general ?wooshiness?. When I feel dizzy, I often have tingling in toes, fingers and lips and down my arms, like pins and needles

Really LOUD tinnitus ? mainly in right ear

Balance ?I'm like a weeble, can?t walk straight

Inability to finish sentences, constantly using wrong words or signing because I don't know the right word or just stopping mid-sentence because I don?t know what I was saying.

Brain feels fuzzy - can't focus ? all foggy/ spacey

Sometimes, if I stand up the dizziness is worse ? if I sit, it usually feels better. When I stand suddenly, my heart races and I feel breathless, like I?ve been running. I get really hot and & more lightheaded ? sometimes everything goes white & I feel like I might pass out.

Sometimes feels like a balloon is inflated in my head ? pressure all around

Embarrassingly poor memory - don't remember conversations, where I put things

Eyes hurt - I wear sunglasses all the time whether its sunny or not, when on computer in dark room

Frequent annoying cough.

Very irregular menstrual cycle ? from 28 ? 90 days.

None of this constant ? have good days/ weeks then bad ones.

So sorry - that was all me me me and much longer than I realised

Well done on the garden centre RTAC

Oh Grockle. You poor thing. You are allowed to be me me me - that's what this thread is about. Dizziness and the other symtoms are so hard to understand by others sometimes.

It's really good that you are seeing your GP. Take the list with you so you remember it all. Mine sent me for some blood tests and I got a referral to ENT. They didn't do anything until I had been back a few times - I guess because most of the time these things do clear within days or weeks. Good luck with the appointment. Hope it goes well.`

I haven read the whole thread, so please excuse any repeat advice.

I've had periodic bouts of acute vertigo for eleven years. On a daily basis I feel ok, but I get dizzy or off balance much easier than the average person.

For some reason, mine always come on while I'm sleeping. I go to bed fine and wake up in the middle of the night because everything is spinning like a top. I have found that sleeping with my upper half partly elevated helps. One doctor suggested that laying flat caused the crystals in the inner ear to dislodge and float freely, whereby they swirl like dervishes and make me dizzy enough to vomit. It took about two weeks of sleeping half sitting up until it subsided. Since I started sleeping propped up on pillows etc it has not come back. So far

The other thing I was advised to do is avoid handheld games like a DS. Something about the strain on the eye and the rapid movements. I just avoid anything that has an epilepsy warning to be on the safe side.

It's a horrible, debilitating thing to live with. I hope you get some relief. Keep asking questions and for help from your doctors.

Thanks for the info panda. Interesting that you get it in your sleep - that's the only time I am guaranteed a break from it!

I saw my gp tonight (hid my list because I was embarrassed). He checked my ears and said they looked ok and referred me to ENT but said they won't do anything. So, not much help really. I hate feeling like I am struggling with this alone and feel like a needy hypochondriac. But, when its bad, I feel really unwell.

How's everyone else today?

Hi Grockle,

My ENT Dr has been fab so don't give up hope. In fact be hopeful as you will soon be seeing a specialist. These things are really hard to treat but they will do tests on you. Hang on in there.

I feel like a hypochondriac too - I think my anxiety is the cause - every little thing I think is something awful. The dizziness makes me feel so bad sometimes that I can't help thinking something terrible is going on even though I know not.

Hello DNP - that is a great tip - will avoid those sort of things in future.

I also identify with the needy hypochondriac feeling which is why I'm so glad I have found this thread, people who can utterly understand. You do get sick of hearing yourself don't you so I'm sure others get sick of hearing it!

I have to admit Grockle that the ENT I saw was very nice and offerred much sympathy but basically discharged me saying it usually goes eventually. Though he was rather vague as to whether that meant weeks, months or years!

My cold on the mend so feeling a lot better despite 2 days at work on 4 hours sleep a night! Hope you are all ok.

Hi all,

Another neurophysio appointment for me today. I feel quite drained afterwards but at least something is being done.

I'm pleased I have found this thread too.

Hope you are all well (as can be!)

Grockle, I get a lot of the same symptoms as you, including the speech and pins and needles problems on top of the dizziness, balance and eyesight problems. Whilst I saw ENT, it was a neurologist who diagnosed me in the end (labrynthitis/ viral inner ear infection causing functional symptoms). Try to stay positive dispite what your doctor said - firstly he wouldnt have been able to see anything wrong from looking in your ears, as its the inner ear which affects balance/ dizziness etc and there are things which ENT can do to help.
I totally sympathise as its a nightmare to live with and totally debillitating. I've been very ill with it for the last couple of years, but the thing which is making a difference (slowly) is physio.
I've also been told to reduce my salt intake (it impacts on the inner ear).I personnally find using earplugs helps when its windy or there is a loud noise too.

Hello all - I've had vertigo for about 8 weeks now...I assumed it was just a virus & would go away but no sign as yet. Doc has given me Prochlorperazine to see if that helps and done some blood tests (checking for diabetes and thyroid I think). I have a tendency to become dehyrated as I have ulcerative colitis and I don't think that helps. Very interesting about caffeine - I'm not normally a coffee drinker at all, but had started having 2/3 cups a day and had some very spinny moments. Also was quite stressed about an assignment that was due in. My worst bit seem to be turning over in bed - I have taken to hanging onto the headboard before I turn over to try and remind my body that I'm not truly on a rollercoaster.
If it doesn't improve - what should I be nagging my GP for?

Hi hollygo - I too think my physio is making a difference though it is slow. The salt intake is interesting. I am going to try it. I use a tight fitting hat whenever there is the slightest wind. I think it helps. I will try earplugs too. Thanks for the tips!!

Laineylou - you poor thing. Hopefully the prochlorperazine will help. They won't cure it - only help stop the symptoms.

I'm not sure at what point a GP would refer you to ENT. Mine took a good few visits over a few months. Hopefully it will go soon. I would push for that and for physio as there are exercises you can do to help dizziness.

Hope everyone else is surviving

Hi all
Sorry to see there are more sufferers joining the thread.

Grockle, my symptoms are similar to yours. My doctor told me ENT wouldnt help much too and made me feel like I was moaning about nothing and imagining it all. Well the ENT did help - I went for all the balance tests and also got a referral to a neurologist who sent me for a brain scan.

Lainey - push your doctor for an ENT referral - mine took a few visits too, but you should push him now because there is a waiting list and it may take a while. I hope the meds help you - the prochlorperazine didnt help me so I switched to Serc tablets.

What physio are you all having? I have heard that physio only helps if it is an ear problem (Epley) physio I think. If its migraine or neuro related the physio doesn't help much. Not sure if that is true or not.

I have had a couple of better days but it came back today. I was just dizzy all day and nothing would stop it.

I have been on amazon tonight and ordered the book Javo recommended so I'm awaiting that with interest.

Can I ask those of you who have had physio who referred you for that? Was it the Dr or ENT? I only had the one appointment with ENT who just said give it time (about 4 or 5 months ago). He did say I could ask to be re referred if I felt I needed to but I didn't think to ask what sort of timescale was appropriate.

I haven't been too bad the last few days though to be honest. My best friend is having a baby on monday so I had a little party for her last night. As I am now off the propranalol I was able to enjoy my 1st glass of wine since september. Two glasses were all it took to have me burning the food! But it made a change to be able to have an excuse for the spinning head in bed!

I hope you are all well.

Hello all, can I join in? I'm waiting for my Neuro appt early August - anyone else been seen at the National in Queen's Square London? I initially started posting about it in the mental health section as I thought I had lost it - I had vertigo, migraine, vision problems but coupled with tingling in left hand (everything is on the left) smelling things that weren't there, only on the left etc., it was so scary I thought I must have some sort of terminal illness. In fact now I think that feeling was a symptom in itself. I have problems with circulation and apparently this can cause vertigo as well. Years ago I had fibromyalgia and the symptoms are broadly similar - I used amitryptline then and frankly I wouldn't mind a little bash as some now. Still, just waiting for my appointment, feeling very sorry for myself. Wanted to ask if anyone had sleep problems with this as well - waking early morning with headaches, waking as if you haven't slept etc?

Hi burningbridges. Yes, I am having huge sleep problems. Either insommnia until half 3 or sleeping for 3 hours and then waking in a panic to a spinning room. I also wake with headaches. Awful isn't it?

Hello feed the goat - have you tried amitryptline? Its the waking with headaches that worried me most - I assumed I had a brain tumour. Has anyone else jumped to that conclusion?

I was telling my neighbour that I didn't feel like going out much because of the vertigo - she said why would fear of heights stop you going out .... ! I just said it was cos my front step was very high ...! Its not exactly a condition that attracts a lot of sympathy or even empathy.

Hi burningbridges, sorry to hear you are suffering too but glad to hear you have a neuro appointment coming up.
Yes, I have trouble sleeping - I have headaches and also have a lot of nights when I either cant get to sleep because I am dizzy or I wake up in the middle of the night dizzy and then just cant sleep. Then the anxiety kicks in and its awful.

People dont tend to give much sympathy to the condition, even doctors don't seem to. I think because you cant 'see' it they dont believe it.

Hi everyone hope you are all having a good day. Apologies for my terrible spelling in my last post, when I read it back I couldn?t believe how bad it was.

Richtea and feedthegoat - I was referred to physio by ENT. Since a nightmare relapse 18 months ago which left me with constant dizziness and a host of other problems, I've had specialised exercises to help my specific symptoms including my vision problems. Prior to that I had had the more standard physio exercises to deal with balance problems after a couple of vertigo/ dizziness attacks. I really believe that the physio has been the main thing which has made a difference to me but its a long process.

I luckily don?t have any problems sleeping, but do quite often feel like I'm falling out of bed! It tends to happen when I'm lying on a specific side and can ease off if I move.

Hi all - hope your day is going well. Just realised I have name changed since my initial posts early on in the thread.

RichTea and everyonelse _ i too fell like a total nutty hypochondriac with my myriad of symptoms and sometimes have felt like crying coping with it all and especially because no one at all (although I tend not to bother telling people anymore because of their silly comments - just like BurningBridges)seems sympathetic - my Dp thinks because I am not constantly at the GP that really when I say (very occasionally) I don't feel capable of going out that I am just making excuses.

We are all brave and the symptoms mean that often I do not feel I am myself anymore. I used to go to bed early to escape from the dizzy/spacey feelings and ear noise but lately have had the dreaded mid - night headcahes that wake me up or headcahes on waking too, but less daytime dizzies- I think the symptoms change and mutate. I think my headches are mainly hormonal but I have really been strict the past week about the migraine diet and getting up at the same time each day and have seen improvement but coming up to menstruation will be the test. Sometimes once I'm up the headche starts to go. To be able to sleep without thaving a head spin I have to lie on my right side and have my head propped up on at least two plump pillows.

It is really important to get that ENT appointment because the initial tests they do (bloods, eye reaction, caloric maybe MRI) are vital in ruling out really nasty conditions - such as MS,auto immune disorders and brain tumours. having these ruled out helped dissipate my anxiety in the early days (had the condition for 15 years). My ENt would not refer me for VRT (physio exercises) as he felt my body had compensated well enough itself, but on dizzy forums many people really feel it is the one thing that has helped. I tried to go private but couldn't find a non nhs pratitioner - I used to be an avid yoga fan but found the advanced moves made my head spin so now I do an advanced Pilates that is run by a physio - which I think has helped.

I have tried amitryptline burningbridges.I was prescribed it to try and deal with migraines a few years ago. Unfortunately it didn't agree with me and the side effects were unbearable. I was exhausted beyond reason and felt like a was living daily life under a heavy weight. I was only on 10 mg a day for 4 months but got quite depressed. Ds was still under one at the time and dh admitted afterwards he was incredibly worried about me. Thankfully it all improved very quickly once I stopped but nothing would tempt me back on it again. It didn't help headaches either.

The 80 mg dose of slow release propranolol (a betablocker) did help. However, again, it came with unpleasant side effects. It virtually stopped my dizziness which I think was because it cut all headaches virtually except the one on waking. But it made insommnia much worse and I felt like I was having palpatations. I've stopped gradually over last month and the palpatations have vanished completely and sleep is improved. But headaches and dizziness are worse. You just can't win can you!

I think other peoples lack of sympathy is because they
genuinely don't understand the impact it has. When you are having an acute attack it is plainly obvious for all to see that you are very unwell. But as time goes on we all learn to cope with the everyday effects to the point where we look fine outwardly. I don't think people who haven't suffered can really comprehend the difficulty we have on a daily basis.

I must admit the 1st time my dr mentioned labyrinthitis by name (rather than just saying it was a viral infection) I came accross labyrinthitis.org website and I sat and cried. I was about 6 weeks in at that point and reading their descriptions and realising I ticked every one was the only thing that convinced me I wasn't losing my mind.

It's awful trying to find meds that work without making you feel unwell in different ways. I live in terror of becoming depressed again and hate starting taking new drugs that may have that sort of side effect.

I've had a lovely weekend. I really think work makes me feel much worse - I tend to feel MUCH better at weekends. I love my job but I often feel quite unwell there or at home in the evenings/ mornings on weekdays. I don't think my job is the cause of my problems but I think it exacerbates the symptoms a lot. Hopefully working part-time will help.