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

Oh Grockle you poor poor thing. I hope you are feeling a bit better. I second what RTAC says - maybe it isn't working. Can you push to see your Consultant again?

Hi RTAC - I hope you are ok too. I don't think I cope at all well. I feel so tired with it all sometimes. I have to put so much mental strength into managing my anxiety and trying not to cry. On a more positive note - today has been better for me. I saw my neurophysio. I have some more advanced exercises to do. They make me feel rotten but it is a good feeling that I am being challenged. The best bit about seeing my physio is she gives me hope that I will get better. I can normally hold onto these feelings for a few days.

Asteria, Dinky and Javo - how are you all?

Oh Grockle how awful for you - I do hope the feeling subsides somewhat soon. Serc can take up to 3 months to work (or so my original consultant once told me) If you are in the clinic/consultant system sometimes if you phone and say you are having a bad period they will see you or give you a cancellation appointment at short notice. I also paid a few times to see the consultant privately (against my principles but was desperate)as i only had yearly or 6 month appointments and was discharged for years at a time too.

Rich Tea- its so frustrating having to turn down work - I should be getting a job as my freelance work has been non existent lately but I too know I couldn't cope atm. Feeling pretty bad as I have a bad cold and the blocked nose etc makes my ears fuller and gives me the dizzies, headache and for the first time in many years nausea (great, welcome back!)

Essexgirl - its great they are giving you exercises- they do really help the body to start compensating. VRT didn't seem to exist back when I first got vertigo but I got a book from America on Amazon and challenging my system did help and I got a lot better and more confident and less anxious about going out. It does also totally cure some people - perhaps you will be one and look back on this period as a blip in a year or so.

Best wishes to all

Thanks all. I've been much better since Monday but it seems to have really taken it out of me and I'm exhausted. I could really do with a few days to rest but that's not going to happen and since it's only extreme tiredness and not spinning/ nausea etc, I can cope.

I didn't know that Serc can take 3 months to work Javo, so I'll grin and bear the spinning for now. The ENT discharged me since he was only there to rule out an Acoustic neuroma, which he did. My mum did suggest going privately but I don't really know where tol start with that.

Sorry about your job, RichTea. That is really crap. I worry about mine a lot. I go to work often when I feel I'd be better not going but I can't have days off here and there and I constantly complain abiout other staff who have high levels of skiving absence. Essex, how did you get referred to a neurophysion. I wonder if that would be helpful.

I have decided that IF I am meant to stop driving, my GP will call me and it's not necessary for me to chase him. That's ok, isn't it?

Grockel - the serc did nothing for me at all - my consultant said that it was not always effective for everyone. I discussed the driving issue with my GP (who seems to have more sense than the consultant) and he said that I should listen to my body. If I feel wobbly then I avoid driving till it passes and plan any long journeys in stages with the options of staying with friends en route if need be. Try not to push yourself too hard through the tiredness as I find that can send me back into attacks.

I'm feeling really shite at the moment and have had another visit to the ent dept. I was told that in no uncertain terms Menieres did not effect both ears at the same time, however my left ear has definitely caught up with the right and possible even overtaken it with the severity of pain - the tinnitus is more pronounced in the right though. They want to do a morning of balance testing to work out which ear would benefit most from having a gromit fitted as they will only fit it in one (stingy buggers!!). I'm not convinced at all - my consultant said that they may do nothing but increase my tendency to get infections "but it's worth a try"... anyone else had gromits fitted for menieres and have there been any results that made it worthwhile??

I've not heard anything about grommits for Menieres (and I've googled a lot )

Sorry you are suffering, Asteria.

How's everyone else?

Grockel - this is an Australian Meniere's page that discusses grommets being really helpful. I think that I will go for it - however I am rather keen to have them done in both ears as they are both bad. Perhaps one at a time with a month or two between, although two lots of general would be shite .

has anyone had the balance tests with the mask and electrodes? I have a 3 hour slot in the ENT dept and don't know what to expect. Don't want my mother to come with me (she will dance about trying to turn the focus on her - she hates anyone else having more attention than her, especially with Doctors!) but it says that I shouldn't drive myself home after...

Hi Asteria never had that test. but have felt awful after calorics etc. Could your mum just pick you up after- outside the building rather than come for the event. That way you get a ride home in car but don't have to worry if you feel nauseous etc like you would in a taxi or on public transport.

I was diagnosed repeatedly for 12 years with menieres but now MAV - always a slight question mark over me though as my left ear was only slightly worse than right and ususally one ear is significantly and increasingly worse. I used to feel a bit pressured to "lie" to please ent but didn't.

I hope you get some answers. Interesting about grommets.

Ooo, I've been summoned to see the ENT in a few weeks. I thought he'd discharged me so I'm rather confused

Asteria, I agree with Javo - get your mum to pick you up afterwards. Very interesting about grommets.

Hope everyone is well.

I had two glasses of champagne last night. The bloody room was spinning and i still feel really wobbly (like I'm very drunk) even now... This from the girl who could tank a bottle and be absolutely fine!
WAIL! Life as I know it is over!!
Its not even like I have a decent sex life to fall back on - try finding a man who will negotiate the tricky minefield of dating whilst sober (or for that matter try finding a man!!). What the hell are we expected to do for shits and giggles now???
Has anyone found suitable alternatives for drinking, dancing and fun?

Asteria, that sounds horrible. I accidentally drank far too much at the weekend and it had no ill effect, which is a relief. The problem is, I spend so much of my life feeling very drunk, that I rarely want to drink because I don't want to knowlingly make myself feel like that.

I have no alternatives for drinking, dancing and fun. I have Dp here most of the time now but until very recently, was a single parent with no babysitter so never went anywehere anyway. These days, I'm too tired or dizzy to go out anyway.

How's everyone else?

What happened to LargeGlass's thread? I can't find it anywhere

OMG you guys my thread is 14 pages! WOW how are you all I need to read through since July see how you are??
Richtea are you any better?

Ive been doing well with only my standard dizzys for a few months but today it got really bad at work so I looked for this thread again and had no idea it was still going and that so many people suffer!
Im on amitriptyline now at a higher dose which seems to control it to a degree so I can work etc but like I said today I couldnt walk straight and had to go home! IM SO happy I have fellow dizzys but sorry we all have to suffer like this! Life is shit with dizziness

I still rarely go out and have FUN! i used to enjoy getting drunk and going out last time I did that couldnt get out of bed for three days so scared to try actually its two yrs now since Ive had a drink :( Im like the boring dizy friend no one wants to ask to go out anymore!

Hi totally realised i hadn't responded to this. My migraine medication is Tolfenamic Acid and since i started using it in the event of a migraine, my vertigo has been much better. As I said before I avoid my triggers, I spent a long time being scared especially when they discovered i had a brain cyst - mine is a dandy walker cyst. Because of it i had a shorter life expectancy, but i refuse to be beaten by it. I work around my triggers, avoiding them where I can, but for the most part get on with life. I definitely find that if i focus on the vertigo when i get attacks, it makes it worse so i do meditation, which really helps.

Michglas Ive never heard of that medication interesting Im going to ask to go back to my neuro next year try some new things out.
Well last night was awful went really weird and vertigo Im sure mine is migraine related and hormonal maybe?
I went to bed early at least I dont feel it there :( just trying to get my head around the fact y brain has been having a constant migraine for two yrs??

I think Ive proberly compentsated to the best I can be but havning these random dizzy attacks has to be either down to migraine or menieres.
The only good thing I can say is after two years its not as bad I seem to come out of a bad patch quicker and the dizziness isnt as bad as it was I even went to a concert the other week but cant drink BOOHOO!

I haven't tried that medication either michglas, I am taking propronalol for mine. I can't understand that I have been having migraines constantly either so am not convinced that mine is MAV.

I have been a bit better the last few days but then another bad night last night, I went to bed and the room was spinning. I've been on the medication for months now, so wonder if this is as good as it gets. If I have MAV will I always have this amount of dizziness?

Its called a stress based reduction course. i found it through a friend, many cancer survivors, people with other illnesses or generally having a tough time do this course fir various reasons.

If anyone has mav and hasnt tried tolfenamic acud, i would recommend you do so xx

Hi everyone,

How are you all? I am having a slightly better spell - not dizzy all the time just having episodes. I really think the neurophysio is working.

I can't drink much either! Probley not a bad thing!

Nice to see you Sweetness. Thank you for starting this thread. It has been very helpful and supportive

Hi essexgirl

Im glad you are only having episodes are you doing VRT? Neurophysio is a totally new one on me? never heard it called that before.

Hows the VRT going ? what exercises have you being doing?

Crap few weeks for me again lately wish I could put it back in its box and is anyone else getting tinnitus ? Im sure its the cold weather x

Sweetness, my tinnitus is really bad atm and I have terrible pressure in my ears. I'm finding it quite difficult to cope with.

Lots of interesting info on here. Hope everyone is ok

hi ladies

so sorry i have not posted (thread dropped off my convos and i just found you all ) i have my MRI tomorrow!

very nervous TBH and i will take DH to hold my hand. my dizzy spells are no worse/better so i hope the scan will reveal something.

best wishes to all of you and i will be back soon x

Good luck tomorrow aristocat.

Hi Ladies

Sorry not been around much.

Good luck tomorrow Aristocat.

I am still dizzy - not any better, am at the gp's again tomorrow.

My MAV meds are not making a difference really. Am seeing a chiro too at the moment to see if that helps. Have also been referred for physio on my neck but its a 19 week waiting list!

Glad to see some of you are feeling a bit better, hope it continues. It gives me hope because I am so sick of this bloody thing!

Hi ladies
So sorry to be joining all of you here instead of out doing something fun! I had a pretty good life before vertigo - married, 2 children, taught private piano lessons. I had a history of headaches that became worse after a car accident last year. I always suspected they were migraines but wasn't sure and now looking back, it seems that indeed they were.

I've had a few vertigo spins here and there over the years, nothing much really until this past 1st of October when the entire room spun. After that I have not been the same. I was left rocking on a boat for a few weeks which then turned into a sensation that I am spinning. And that's how it remains - some days are better than others and some are absolutely awful!

I also have pressure in my head, ears, face and head pain, visual vertigo and problems - like at the markets and driving. Also sensations of false motion.

I had tests done - ENG, VEMP, calorics (fun!) and rotational chair that were all normal. I also had a brain MRI done last August because my headaches were so bad and that too was fine.

So they now say it's migraine associated vertigo.

I think the spinning really intensifies in the 10 days prior to the start of my period.

My GP gave me some valium to try and wants me to start pizotifen in a couple of weeks. I also have been trying the diet and lifestyle changes but with the holiday almost here it is going to be hard to reduce stress.

I am also taking magnesium glycine, magnesium taurate, a multivitamin, calcium and extra B2 - to what end - I don't know.

Thanks for listening and I really hope we all get over this soon!

Hi all,

Welcome lyric. Isn't it awful!!

Sweetness86 - she is a neurophysio who specialises in VRT. She is part of the vertigo clinic at my local hospital. Her major interst is balance/dizziness. She works with stroke, head injuries etc who have been left with balance issues but also people like us. I love her. Apparently VRT exercises are now being made more specific to particular problems. I wish you could all see her. She is really making a difference to me.

Hope you MRI went well aristocat

Hi Grockle and RTAC - sorry you are both bad at the moment

thanks grockle richtea and essexgirl the scan was not as bad as i expected. however the anxiety and stress today was horrendous! i tried to keep telling myself that it will be fine but i couldnt eat/needed the toilet/had headaches and butterflies all day today ...... aaarrgghhhh

they are really noisy and i got dizzy getting up off the scan table need to wait a few weeks for the results so fingers are tightly crossed here

hope everyone is OK - i am teetotal aswell (the room spins without alcohol )