Vertigo, numbness & tinnitus - please share your experiences

[Grockle]

I have vertigo. It comes in waves and I'll have several attacks over a few weeks then nothing for months.

Sometimes it is a brief 'woosh' that makes me suddenly sway and other times it's proper full-on dizziness with my world spinning - it can last from many minutes to several hours, with my fingers, toes and lips going tingly then numb.

Usually, between bouts of vertigo, I have intense tinnitus (I forgot to tell my GP about that bit ) which is so loud it hurts. My GP did blood tests & an ECG when this started about 12 months ago but all came back clear. So, I don't know what causes it and it's making me miserable. I have anti-emetics which make me sleep and don't really stop the nausea

This bout started yesterday - was bad for about 2 hours and has been mild ever since. I feel extremely nauseous and tired. And I have to go to work soon. I am not sure I should drive but not much choice. I don't like this.

Has anyone else got this? What makes it better?

These symptoms scream out at me to have a blood test for B12 deficiency. A full blood screen often does not include this test - in fact I've heard of people having to insist/beg/change GP to get it.

The reason I say this is because your symptoms sound like those in Pernicious Anaemia. If you look them up for yourself you're really the only person who will know but I think it might be an idea.

There are two main types of Pernicious Anaemia. One being a simple deficiency and one being an autoimmune disorder. If you have any other autoimmune problems it's normal to get additional ones.

The numbness was my first alert to the fact that I have it....I've written quite a few posts on my own website about what I was going through when I first discovered it but I'm not allowed to give the address here. However if you wanted to check its on my profile...i think!

Don't worry though - it's treatable but if you read the symptoms and don't think it fits you then I have another idea....but check PA first. ;)

Claire

I thought they'd tested that but I'm not sure any more. One of my grandparents had pernicious anaemia. I forget the symptoms so will look up later. I'll look for your site too, Claire. Thanks.

I'm off to work now. Bleurgh.

AH - the plot thickens....PA is considered a hereditary thing so the fact that your grandparent had it...good news is, treated fast shouldn't bother you too much. Beware of PA sites with lots of scaremongering!
Claire

(I got 2 months off sick - hence being on here!) ;)

Interesting. I do have a few symptoms but they are symptoms of so many things, including life...

I do get very tired and have a history of depression (nothing recently other than a few periods of feeling stressed and a bit blue)

Proprioception can be problematic & I constantly have brain fog - sometimes worse than other times. I have a terrible short-term memory and often can't find the words to finish my sentences.

No jaundice, diarrhea, tongue swelling though.

Thank you. Am off to work now. Really!

Hope you are recovering.

ok - hope you're not late and you'll get this after work but....you don't need all the symptoms for it to be PA. i just had extreme tiredness, not being able to find the simplest of words to string together and terrible memory for probably a good year or two before diagnosis.

What did it for me was when the tingling started. I was getting really upset that I couldn't play my guitar properly and after a couple of months I started getting scared (too much googling!)

Doc checked me for MS first and then HE actually looked on Wikipedia, printed the page off while I got dressed and showed me it when I went back into his office. It was associating the tingling/numbness with PA. Luckily I had an excellent GP and it all went from there. Plus I already have vitiligo (an autoimmune disorder) so it was even more likely to be PA.

To stop the tingling though, you want the B12 injections asap. I was prescribed once a week but then he bumped it to two after I said the tingling was just as bad and I was still finding it hard to get through the day at work due to fatigue.

If the tingling doesn't stop, then they should offer an MRI scan to check spinal cord for damage but again don't worry. If any damage has occurred, it stops as soon as you get the injections and is partially or even fully reversible.

Grockle - do you have any problems with feeelings of pressure in your ears? as well as the noises. I have your symptoms but also the constant feeling of pressure in my ears (sometimes worse sometimes better, but it never goes). Because my dizziness and spacey feelings started about 6 months after a labrythitis infection I was referred to ENT. For many years they thought I had Menieres disease but my hearing hasn't deteriorated enough - so now they think I have Migraine equivalent also called Migraine associated vertigo - basically you get dizzy, brain fog etc but don't get the headache (or for some people at least not so badly). I suffered from horrendous migraines (2 days constant vomiting and collapsing from visual disturbances)in my 20's after having meningitis- but they diappeared and then the vertigo started in my early thirties.

Try looking up MAV on google. There is a chat forum called Feeling Dizzy too and I have found a book on the migraine diet really enlightening (the diet didn't help me significantly but I discovered how all my symptoms starting with motion sickness as a child are linked) it is called How to heal your headache here www.amazon.co.uk/Heal-Your-Headache-David-Buchholz/dp/0761125663/ref=sr_1_1?ie=UTF8&s=books&qid=1305709312&sr=8-1 (good advice even if no headache) also found a book called Feeling dizzy usefulwww.amazon.co.uk/Feeling-Dizzy-Disorders-Understanding-Dizziness/dp/0028616804/ref=sr_1_1?s=books&ie=UTF8&qid=1305709459&sr=1-1

Good luck - I know how weird it is - everyone thinks you look okay but your'e not and its so tiring

Have they considered Meniere's disease as well? It is an inner ear condition. Wouldn't explain the tingling/numbness but causes episodes of intense tinnitus and vertigo.

Hope you are feeling better today x

sorry - the form is called www.dizzytimes.com not feeling dizzy

When I saw my GP (about 12 months ago) he said it could be a couple of things and wanted to check heart and blood first. That all came back clear and I felt like I was imagining it all so I didn't go back. Then it all eased off a bit and I was coping so I've plodded on. I don't really want to go back - I seem to be at the GPs all the time atm - Since December I've had referrals to Rheumatology (re joint pain which has no eased again but I've had on & off for as long as I can remember), Physio (joint pain) & now Dermatology. If I go back, he'll just think I'm a hypocondriac.

Thanks for the suggestions. I just want to stop feeling spacey and spinny.

oops x-post with Grockle
interested to hear all these other possibilities as I have been diagnosed with Menieres but no other avenues have really been investigated

thanks for the dizzytimes link too

Don't you have to stop driving if diagnosed with Menieres?

Most people can still drive with Menieres as you can have long periods of very mild symptoms - with no merrry go round feelings or drop downs. You also get to know when things are starting to get bad.

Grockle - I know its embarassing going back to the GP, but they are getting paid by all of us to deal with these things. Your vertigo could be a form of BPV - benign positional vertigo and might be linked to your joint problems- being in a certain position because of pain or stress causing interruption of blood flow etc - would explain the tingling. Could you see a different GP? I had to go back 4 times to my GP and he still would not refer me, finally got a holiday cover doc who referred me as urgent immediately when he heard my symptoms. In meantime I paid to see consultant privately (using our broken boiler money) as feeling so dizzy and spacey with a toddler and a baby to look after was scary. I found great reassurance in having the nasty things ruled out (MS, brain tumour etc).

There are exercises you can do to help train your brain compensate and so get less dizzy (involve doing some neck curls etc that can make you feel dizzy). Also diet things can help - low salt, low/no caffeine, no mucus foods (bananas, cheese) monitor fermented food (pickles, soy) , alcohol etc. Keep very well hydrated at all times. Be aware of times things might be worse (write down dates etc) e.g. hot weather, strong sun in eyes, thunder weather,period,sleeping late.

Some people find that Stugeron (an anti sickness pill from the chemist) really helps with the dizzy feelings.

However, you do need some sort of diagnosis to be able to start working on the problem with the right treatment.

Good luck - hope the feelings subside soon.

Thank you Enid - I will go back if it continues.

Yesterday was much better - I took the anti-emetics that the dr gave me last year and they helped. This morning, I felt ok, got in the bath and couldn't get out again - everything was spinning. I couldn't even call in to work because I couldn't speak properly. It's making me sick and it's horrible. It's one thing feeling like this after too much to drink but it's miserable when there is no obvious cause. I feel terribly guilty and lazy now, not going to work (I did eventually manage to contact them) since there is nothing terribly wrong. But I can't stand up and I really couldn't have driven either! I am home in bed, feeling nauseous and sleepy - I took some stugeron and it always knocks me out. I'm hoping that a bit of a sleep will help and I can go to work this afternoon.

I've had similar, minus the tinnitus. It turned out to be my back, mainly a contracture in my trapezius muscle causing trapped nerves.

Oh! I have sciatica and weak muscles in my back. Have had physio for it and ongoing exercises to do and its been much better.Has yours improved?

Mine has improved thanks to a great osteopath and 30m yoga everyday. Also I try to relax and avoid getting tense, which is difficult with two young children. I'm also very aware of my posture and relax my shoulders as much as I can.