Fao Sqad

[creamegg]

Hi,

Just after some reassurance really. Was still getting dizzy and feeling sick etc, so doc told me to take stemetil regularly again, so I have been taking 1 twice a day, instead of the full dose 1 three times a day.

He said to do this for the next week and then try and ease off them again, is this ok? I keep getting told that I shouldn't be taking the stemetil still, this is 5 weeks on now....as they arent good to take?

[Sqad]

I can't see that the long term use of Stemetil is at all detrimental.

One three times a day for a period of at least 6 months is perfectly safe.

[creamegg]

okay thanks. Confusing when you get told different things. My hearing seems to be fluctuating a bit again, like it did in the beginning too. Really not a happy bunny, just want to get back to normality.

[jennyjoan]

I take vertigo very often and find whether I take the tablets or not - the attacks keep on happening. Sorry creamegg - they are so debilitating and sickening. What helped me - drink loads of cold water

[Sqad]

Well, that may be interesting....the fluctuating deafness.

Do you get any feeling of fullness in the deaf ear and is there any ringing (tinnitus) in the affected ear?

[creamegg]

I sometimes get a long buzzy noise in my ear, and it does feel odd sometimes but fullness, I'm not sure.

It almost feels like pressure changes, you know if you were in an aircraft etc but very subtle.

[Sqad]

I assume that when you say the E.N.T Consultant you had a barrage of hearing and vestibular tests?

Have you got a follow up appt?

[creamegg]

no hearing or vestibular tests....i have a follow up in 2 weeks when I will get a hearing test, there was no one available to do it last time.

They just gave me the exercises I told you about and cleaned out my ears.

[Sqad]

That is not good enough.............you need hearing and vestibular tests...........nobody there to do the tests?/

NHS...not at it's best.

[creamegg]

I know. :(

[Sqad]

;-) cheer up....keep me informed.

[creamegg]

will do , thanks again.

[Eve]

Until a recent change in medication I've taken stemetil for many years.

Can't believe they haven't done other tests! Sounds similar to a lot of the things I have and can be very disorientating and annoying at first, well, they still are for me but I've had over 10 years to get more used to them.

I would be careful about anything that moves when you are still, like lifts and escalators (hold on to the sides, even in a lift) and anywhere too loud, especially with lots of different loud (or loud to you) background noises going on or lots of people talking. Loud music can also made my symptoms worse. Lots of flashing lights can be uncomfortable too.

If you are off balance and find your special awareness isn't good then allow yourself more room if possible and be careful when going to sit on say a wheelie chair, I tend to bang into a lot of things, catch door frames, cupboards etc... and have missed sitting on my work chair many times which, being a wheelie chair, is not good.

If tinnitus is causing problems then I find having headphones on can help, mostly with music for tinnitus, but sometimes I just have headphones in on silent as it controls noise better and is quieter. Even low background noise like I have clocks which tick or having the radio on really quiet, even when not on a channel, just buzzing.

Never found anything that helps the weird frequency changes! I get a loud ringing sound (like a high tuning fork) and quite often one side of my hearing just shuts off. I actually enjoy the quiet sometimes when my hearing is down, it can be more uncomfortable when it first comes back and everything is "too loud".

I'm saying this more from a Meniere's Disease point of view but if you are having similar symptoms, even if they are hopefully short-lived, I'm hoping some of this might help a bit.

If you drive, might be worth checking DVLA guidelines about it. Not saying you would drive like this but while things are ongoing it might help to be careful, even if you feel better at times. I have never driven but know there are some kind of implications about driving licences and certain conditions. I think I would have be medically signed off to be able to drive with Menieres.

I hope some of this helps and you are feeling better soon or they do more tests if not. It can be a horrible thing to have but you're not alone :)

[creamegg]

thank you for your advice eve. I had a really bad night last night, very dizzy, even on the stemetil and it has really thrown me again, I was just starting to get my confidence back. My hearing is just weird in one ear, is that like you?

[Eve]

Aww :( I have it in both ears but one is worse than the other. The weird frequency changes are really odd and disorientating, I get them on top of the hearing loss and it's like a high pitched sounds and my hearing cuts off in one hear then it can switch to the other ear. I wonder if Sqad can explain why.

If you are still getting the dizziness badly it seems strange to try to wean you off while you are still suffering badly and only raking one of the full dose but I'm not a medical professional. My dose was one three times a day though when not bad I did tend to take them more as needed.

Similar to the Cinnarizine they switched it to to try to see if it helps me more. I'm also on betahistines but don't think Sqad holds much cop by them :) I take both three times a day.

Can you speak to your GP this week to see if there is anything more they can do, such as recommending the full dose as a maintenance dose for now until things settle?

[creamegg]

I will try and see a doctor again tomorrow if i still cant hear anything but I am going to take the full 3 tablets today anyway. Don't suppose you fancy a text pal? I could do with being in contact with someone who knows how the dizziness feels, as I feel so alone.