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Unsteadiness/Off balance

Hi people I’m new on here . Diagnosed 10 yrs ago with RRMS but feel it’s moved to SPMS. Mobility ok. Stiffness and fatigue always lurking but worst of all is this really prominent feeling of unsteadiness in my head . It’s not obvious to anyone else that I’m off balance but I always feel it in my head … really getting me down… is this something anyone can relate to. So frightened it’s gonna progress further and I’ll be unable to function … I’m 52 and really trying to stay active and exercise but this is making it very challenging.

Sorry for rant… grateful for any advise.

A :slight_smile:

Annsy,

MS can certainly affect balance, but there can be many other causes.

I have a problem with an inner ear condition as well as MS, both causing dizziness. Neither produce constant symptoms, they come and go and sometimes disappear for quite long periods.

My advice is to get it checked out, it could turn out to be something simple.

Ben

I agree with Ben. Don’t assume that all your symptoms are due to MS. Talk to your GP about it.

Thanks for reply people … do you take meds for dizziness /balance?

No, I’ve never been offered meds, I’m not sure if there are any, but I guess it depends on the cause.

Annsy

no problem with a rant, this is a great place to let of steam with people who might actually know how you are feeling. As stated above it is well worth checking with a medical professional as there could be all sorts of non MS reasons for balance issues. I have had MS related balance issues since 1991. I do not know of any meds that can help. Before I got my diagnosis, I was given Stematil which was supposed to help those with balance problems from ear infections, needless to say it did not help. Over the years I have developed a number of strategies to help me out. I take extra time to plan my route (even around the kitchen!) to ensure I have the best chance of avoiding a nose dive or faceplant situation.

If it is like vertigo or a drunken feeling there are exercises to help. try these Brain & Spine Foundation | Vestibular rehabilitation exercises

All the best

Mick

Thank you so much for the link . Looks really interesting so I’ll be giving it a try for sure :slight_smile:

I have had vertigo, balance problems, trips due to heavy legs, foot drop, and a number of falls which began in my 50s.

I was sent to NHS Wheelchair Services - got a powerchair and a manual wheelchair - problem solved.

I’ve gone on from RRMS to SPMS over the last 18 months, had MS just over 5 years in total.

Since going onto SPMS my balance is worse but it seems to my head that has made by balance worse.

I get the unsteadiness feeling in my head, like a woozy feeling but without getting dizzy.

I also suffer attacks of nausea but not actually being sick.

The only way I can describe the whole thing is like It feels something like travel sickness.

GP said many MS’ers get Vertigo symptoms, they can also suffer from inner ear issue, which gives this vertigo feeling.

I find that Prochlorperazine tablets help with the nausea/ woozy feeling.

Oddly since starting Sativex I get tinnitus which again can make me woozy.

I know its the Sativex because this is my 2nd try of it and when I stopped the first time the tinnitus went away, but has returned since restarting on the Sativex.

Probably knock the Sativex on the head this time for good, it’s not making my mobility any better.

Hi Annsy

Havent been on here for long time but relating to your post massively at the moment … it’s the worst sensation ever and so scary . Did you ever get relief from yours , any advice welcomed.

thanks

Annie x

Hi Annie41 I am quite new to all this. Lately I have suffering from vertigo it is horrible but usually only lasts for a few minutes. I also lose my balance quite a lot and feel like I am drunk but I don’t take anything for it.