LABYRINTHITIS - Anybody else suffering this horrendous illness.

[pip12]

Had this once before about two years ago and it seemed to sort itself out. Its back with a vengeance, the dizziness is frightening, the first time it happened thought I was having a stroke. The doctor says it is an infection of the inner ear but carn't help wondering if this is yet another side effect of RA. Have had a couple of migraines too, just seems its one thing after another. Just wondered if anybody else has had any of this. xx

[alsmum]

Hi Pip12,

I was diagnosed with Labyrinthitis the week before Christmas and was prescribed Prochlorperazine which actually made me feel more dizzy. It has improved but I still lose my balance when I put my head back and it is particularly horrible when I turn over in bed, the room really spins. I have done some research on this and wonder if I have BPPV ( form of vertigo) as I seem to fit the symptoms for this - self diagnosing I know!! So I am going back to the GP this week to get checked over and maybe get referred to a physio. I have had RA for 3 years and after a hit and miss trial with various drugs I have settled with Methotrexate injections 15mg which are helping a lot. I wish you the best of luck with getting over these horrible symptoms as they are deeply unpleasant, difficult to explain to anyone who has never suffered and it really knocks your confidence especially when going out.

I think it must be Karma that I came on to this site today and this is the first post I read as I haven't been on for a while! Gentle hugs to you.

Fi x

[pip12]

Hi Fi - Thanks for your support, like you say unless you have suffered it, its hard to explain how horrible it is. The doctor prescribed me Prochlorperazine too which doesn't really help that much. I am going back to the doctors this week too, sick of it now. Mine seems to go worse when I lie down, terrified of turning over in bed in case it comes on, sleep with 4 pillows now trying to avoid it.

I hope we both get some help with it this week, think we have enough to put up with, we suffer enough with the RA LOL - All my best wishes to you xx

[trish1957]

Hi

I had a really bad time last year with BPPV. I woke up one morning and stood up and the next thing I knew I was on the floor. I found a lot of info about it on BUPA website. I felt really ill for a few weeks after that incident but it did pass but very frightening at the time.

I hope you feel better soon.

[pip12]

Hi Trish - Not looked on the BUPA website yet, will have a look later. I had this about 2 years ago and thought I had got over it but its come back. Will have yet another trip to the docs this week, but not to hopeful about help from there. I seem to be spending as much time there as him LOL. Thanks for the good wishes xxx

[tansy-ann8]

Feel so sorry for you, You wouldn't wish it on your worst enemy. I was hospitalised about twenty years ago as I couldn't even stand, or even lay down and turn over without the room spinning. All I can say is it did go away and yes it has returned from time to time, but (thank God) not with such extreme symptoms. I do get noises in my ears and I still live in dread of it coming back so I know how you feel. No; I do not have RA. (My son has it too and he does not have RA). Hope you feel better soon.

[pip12]

Hi Tansy-Ann - Thanks for your reply, maybe it hasn't anything to do with RA then, everything that goes wrong at the moment I am putting down to RA. Its bad enough having to put up with the pains and fatigue of RA without this on the top. Hoping the doc will sort it out for me this week, but not holding my breath lol - Take Care xxx

[Hidden]

Hello

Yes it is an infection in the inner ear, suppose He has given anti -biotics and just possibly some medication to clear the ears out that softens the wax.

Possibly they may clean your ears out of dried wax etc

Good Luck

BOB

[Philip in reply to Hidden]

I was sent to a physio for some special exercises, worked fantastically after day or two all gone and if I have any sign I do the exercises, brilliant.

[pip12]

Hi Bob - He checked my ears last time for ear wax but there was none. It is an infection in the inner ear and is the most horrible thing. Just hope he will sort it out for me quickly this time - Take Care xxx

[Hidden in reply to pip12]

Good luck

BOB

[Hidden]

Hi pip,

I have had this for 30 years. Started when I was pregnant with my daughter. I have come to accept it is part of my life and now know the signs usually well in advance , well, twelve hours or so which is long enough to start taking my tablets and reduce the impact. As you said to Bob, it is nothing to do with ear wax, and it is the most debilitating illness . I feel for you, and I have found that stress is a common factor for me. I did not have RA when this started and do not believe it is anything to do with RA although it may be triggered by stress. For me , it occurs less often now and has become less debilitating. I am trying to think what I do to help that i can suggest, the main one is sleep, of course no driving and sometimes the hair has to wait for a few days to be washed. Look into some homeopathic treatments - I always have a treatment as soon as I can after the infection has gone and I think this may well have helped reduce the occurrence

Sal

[Kathyfitz12]

Poor you Pip2- I have had Labrynthitis for 15 years- mostly it is just a niggle now - but my ENT. Consultant has confirmed that I also have Benign Positional Vertigo...he says the Labrynthitis is a virus & I am stuck with it! I find the only way to deal with it is just be careful not to jerk your head back- I had a nasty attack when I forgot & put my head back sharply to insert nasal drops- I ended up having to lie down for 48 hours until it settled. Do ask your doctors about getting some treatment from a Physio using the Epley Manouevre. It,s not very pleasant in the beginning - the first few times I actually vomited - but I stuck with it & I have an instruction sheet & can practice it myself when I

feel I need it. You do need to be professionally diagnosed as you need to know which side is affected - if you do the exercises towards the wrong side it would make the dizziness worse.

I take 20 mg Mtx a week, & I don't think that has any effect on the dizziness.

Good Luck & if you can manage to persevere with the Epley treatment I'm sure you will be able to cope! kathy

[pip12]

Thanks Kath and Sal - I must admit I was shocked to hear how long you have been suffering from this on and off. Looks like you don't really ever get rid of it. I smiled to myself when you said about leaving your hair, I had a really bad attack come on while washing my hair, I was using the shower head over the bath and had to just leave my hair with the shampoo on, won't do that again wash it in the actual shower now. I will mention to the Doc about Physio Kath, I will try anything to make this easier, frightened of going anywhere in case it comes on bad again.

I think you are right about the stress and sleep Sal, don't sleep to well at night at all, so started having a sleep in the afternoon which I think is helping

Many thanks for your help - Joan xxx

[Philip]

I have that and was sent to a physio who gave me some exercises while lying down and it worked brilliantly, ask for a referral and see what they say.

good luck

philip

[pip12]

Thanks Philip, will try anything at the moment xx