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Don't know how much longer I can do this

So I’m posting because I’m at a loss as to what to do next. I’m still having really bad dizziness and it hasn’t gone away or eased off - its constant and I’m on buccastem which has made no difference. I’m guessing that my relapse is still very present but would have thought that the dizziness would have eased off by now. Getting fed up as just can’t see an end to it and just don’t know what to do :frowning: Don’t know how much longer I can cope with this dizziness

Hi Anon

I read your post and was quite concerned. Things have definitely got out of hand for you. I’m new to all this, only diagnosed last week but have also had bad spells of dizziness. Is there nothing you are doing that makes it better or worse? Somewhere on the forum I read about it and many people, myself included found that the position or movement of the neck worsened it.

I have found that I make it worse by bending my head forwards or turning suddenly. I was encouraged by a neuro to keep a diary for a while with what I was doing or had eaten or changed position etc. Are your blood pressure and iron levels okay?

Please don’t give up, things get on top of every one, and we have more reason than many to get down now and again. Please see your doctor, it may be something treatable but be kind to yourself and make sure you eat and drink well and get plenty of rest.

You probably know all this and I’m sorry if that’s the case but in your post you sound to be really down and it just felt wrong not to reply. Please take care and look after yourself.

Min x

Buccastem won’t help with the dizziness as such - it stops you feeling sick. I take it myself for that reason.

Dizziness is really nasty, isn’t it? It’s relentless, and as you’ve noticed depressing.

Have you had any physio for it? There are exercises that you can do that really can help. That’s what I found anyway. The physio also gave me advice on how to help keep dizziness reduced. I was diagnosed with vertigo as well as having dizziness thanks to my MS. My vertigo got worse when I moved my head, my MS dizziness happens when I’m just standing still and the world tips me over :slight_smile:

There is probably a lot of who-knows-what’s-the-cause dizziness going on as well.

Ask your GP if they can refer you for balance physio - I had it at my local audiology hospital department as I had tinitus and hearing loss at the same time.

Good Luck with getting your dizziness sorted, or at least finding a way to make it bearable. I worked with someone who said ‘oh we make ourselves and the kids dizzy - it’s fun, isn’t it?’ I wanted to scream ‘have my dizziness then you daft bat!’ or words to that effect lol

take care,

Ellen

Have you tried betahistine? Not sure whether you could take it depending on you but it’s good for vertigo X

I tried betahistine and it hasn’t worked - nothing’s working and it’s been going on for weeks - I’ve been doing the cooksey cawthorne exercises which hasn’t helped - am I going to be stuck with this dizziness forever?!

This is an awful symptom so you have my sympathy. Have you had steroids? When i had this so bad that i couldn’t stand up i was given steroids and went to the neuro-physio (she had to work with me for 6 months it was so bad). At the same time i started rebif. Are you on a dmd? With all these things combined the dizziness/vertigo went away. Not sure what helped the most or whether i just started coming out of the relapse but it was a relief when it went. I hope it eases for you soon. Teresa.x

I had 3 days of oral steroids and they didn’t work if anything made me feel worse. I had neuro Physio last year and still do the exercises that she gave me but they don’t seem to be making any difference. Not on any dmds yet - waiting for them to approve them. Dizziness for me is the worst part and I hoped it would have gone by now - the thought that I could have this for months is unbearable. I’m back to work on Monday and I’m working from home as cant drive. So fed up I just don’t know how much longer I can cope with this all- I try to be positive about things but the dizziness is just the last straw

It’s not good enough that you have been left like this! (hugs). Do you have an ms nurse to talk to? Tell them you cant cope with this any longer. If you can ring her she might be able to get the approval for dmd’s bought forward. I have nothing else to suggest but hope the dmd’s help and your symptoms start to improve as you recover from this relapse. Do some research on the dmd’s so when you eventually get approval - you have an idea which one might suit you best. Its not any consolation at the moment but mine was pretty bad and i have made a good recovery. Teresa.x

Thanks so mich everyone for your replies it means a lot and a big thanks to Teresa you have made me feel slightly better and that maybe there’s a light at the end of the tunnel after all!

Take care. This is a rough patch but please try to stay positive. Mine was 8 years ago and it’s not been that bad since. Grit your teeth through it my love. Teresa.x

I can only sympathise as I too suffer badly with dizzyness. I always used Stemetil which worked for me, the neuro doesn’t like me using it because i crosses the blood barrier into the brain however nothing else works for me so the GP prescribes it. I have tried domperidone, betahystamine, cyclazine, ondansetron and always go back to stemetil. I find I don’t have to take it long term so I would sooner be free from the dizzyness and the problems that causes than worry about he drug. Maybe one of those would work for you too.

i take prochlorperazine and baclofen for the dizziness and nausea. they really help!!!

Hi Anon, I had really severe dizziness in May with a relapse - for about a week I felt the same as you - if this does not ease I will not be able to cope long term. I feel hugely better now, about 70% of normal. I so so hope you will be out of the clutches of the MS ‘monster’ soon. It really helped me to visualise it as a monster that was taking over my body. I know we don’t have much control over it, but I decided to arm myself with knowledge in my attempt to fight back - part of the reason for being on this forum. Sending you good wishes Bea

Ps When I was admitted recently the general dr prescribed betahist - saying it is brilliant for labyrinthitis. She planned to continue it on discharge with 5 days of steroids, but the hospital neurologist said it would make things worse and told me to stop. I also felt worse on the steroids - particularly In the week after I finished them.

Dear Anon, I feel so sorry for you. Ive only had 1, very short spell of dizziness, but it was horrible, and if youve had it for a length of time, I can quite understand your despair, But I can only go along with other people`s suggestions of contacting your MS nurse or GP. Sometimes we can only cope by living one day at a time…or, even just one hour at a time. I wish you well, and hope you soon feel better.

Faith WB

I’m definitely going to go the gp this week and see what else they can prescribe because its just getting me down and I’m working next week and its hard when you feel dizzy to sit in front of a computer all day! This illness sucks big time and I’m fed up of trying to cope with it. Hope they can sort out my dizziness

Have to agree with Tenaka07 been taking these for years and it works well,

Before i was on these i could get vertigo sitting on the toilet seat,that was know fun.

Hope you find the help you need.

Take Care.

Chris

Thank you everyone will ask the gp about these two - any sides effects from them?

I got the gp to prescribe prochlorperazine but so far haven’t noticed any difference to the betahistine I was on - they’ve always swapped my gabapentin over to pregablin. My dizziness is still here with a vengeance and I just don’t know when it’s going to go! :frowning:

Thinking of you while you are having such a rough time. Keep on hanging in there. X