Dizziness: I thought I had vertigo but was... - Ataxia UK

Ataxia UK
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Dizziness

stjamesangel
stjamesangel

I thought I had vertigo but was diagnosed with Cerebellar Ataxia in March/April 2016. I have accepted my legs not working and being slow, but I have really bad dizziness and wondered if anyone else has thus problem? is there anything I can take?

29 Replies
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I have MSA. I have ataxia and dizziness. Latter connected to fall in blood pressure. Light- headedness starts in morning and last all day . Only help at moment is to Lie down at sit down for a while. Next neurology apt in March will find out what help I can get.

Hope your sorted out at your appt, x

joe45
joe45
in reply to Pec2884

Hi 👋 Iwhat meds do you take for Msa,?...

make sure that nothing else is causing the dizziness - ie an ear infection . there are some over the counter things you can take- some travel sickness pills may help. re the ataxia- keep as active as you can- it really is a case of if you dont use it you lose it. Have you applied for a blue badge. If you need help with washing an dressing - have you applied for attendance allowance ? you dont say your age. Find out from Ataxia uk if there is a local group to join. I also found the cards from Ataxia UK explaining what ataxia is very useful and they also sent a pack for GPs to my surgery. It is quite a shock to be given this diagnosis so look after yourself and all the best Sylviax

Thank you, I am 61 years old, I have never heard of Ataxia before and I worked for 5 Doctors for seven years. I don't get any help, and joined Ataxia Uk last week. I found their pack very useful and full of information. I have been given travel sickness pills (hyoccine bromide) to dry my mouth up to help with speech. Take care Sylvia, look after yourself

Angela xxx

Does these tablets help for speech? I am slurring terrible?

Hi Sharon I am taking Hyoscine Hydrobromide 150mg. These were recommended by my speech therapist. They dry your mouth up, as too much saliva makes you slur more. There are also aids available to make speaking easier according to my therapist. I don't see my neurological consultant till March, I will then ask about this and the dizziness xx

Hi ,I have probable msa -p /tortecollis you get dizzy with c a it's yr blood pressure I dont this problem with mine and I'm not sure what you can take .."

I'd ask yr nerologist,...

stjamesangel
stjamesangel
in reply to joe45

Thank you x

Iain25
Iain25Volunteer

I have Cerebellar Ataxia and suffer dizziness on occasions. I take Prochorperazine tabs to help alleviate the problem. The tablets had also helped me cope with motion sickness when I went on a cruise holiday last year.

stjamesangel
stjamesangel
in reply to Iain25

Thanks Iain, I will ask about these. My dizziness is there all the time, I am unable to look up as I fall backwards that's why I feel like I have vertigo.

Angela

foffee11
foffee11
in reply to Iain25

Is this a prescription or over the counter drug?

I have CANVAS which includes cerebellar ataxia. Through some trial and error with my doctor, I have found some relief with LYRICA.

Thank you

foffee11
foffee11
in reply to Mmenergy

Is this a prescription or over the counter drug

Mmenergy
Mmenergy
in reply to foffee11

Hello, Lyrica is a prescription drug in the USA. It is widely prescribed for diabetic neuropathy but I am not a diabetic. It definitely gives me more energy, gained 10 lbs., which I needed to do and minimizes my N pain.

Hidden
Hidden

Hello my name is Andrew and I to have cerebellar Ataxia since 1997 I am 60 year old it affects my balance and coordination how does yours affect you hope you keeping ok

stjamesangel
stjamesangel
in reply to Hidden

Hi Andrew, I was diagnosed in March 2016. It affects my balance and coordination as well. I find it really depressing as I can't do the things I've always done.I need help with most things, my speech is slurred so much so I can't use the phone. The dizziness is constant, as soon as I move. I am hoping my neurologist can prescribe something when I see him in March. I don't get a full nights sleep as I am in and out of the bathroom don't know if it's the baclofen (for my jerky eyes) or the Ataxia. How do you cope? you've had it a long time. Take care

Angela

Hidden
Hidden
in reply to stjamesangel

Hello I cope with my problem by when I have my falls I just say should of took more water with it.

stjamesangel
stjamesangel
in reply to Hidden

What a good sense of humour!

Having a good sense of humor goes a long way! I've had Cerebellar Ataxia for a number of years, and have learned to just live with it. I know there isn't much anybody can do about it, in my case, so I always try to accentuate the positives and minimize the negatives. As mine has slowly gotten progressively worse, some symptoms have become more difficult to deal with. So having a sense of humor, and having this support group is really helpful to me!

auntiesally
auntiesally
in reply to Hidden

hi, makes me walk strange, cant go down kerbs without holding on, pisses me off

Hi aunties ally, I am excactly the same. The last fall resulted in broken bones! so I've got to hold on to someone if I go out which isn't very often. I also feel as though my life is over now, I have to rely on everyone.

I dont go anywhere on my own, saw my neurologist a couple of months ago, felt bit better, but sadly not now, will my condition improve?

I get dizzy as well. However I feel my dizziness is more to do with the disconnection between my sensory processing and motor control. I don't get that many dizzy spells when I am sitting down or lying down. It seems to only happen when I am standing or walking (when I need to balance myself). If I am dizzy, I just sit down or take a rest to make myself feel better, and I employ some mindfulness techniques. I wonder if this strategy would also work for you? Also I manage my stress level. My stress is not so much about work or life etc, but about the stress from sensory environment like being in an unpleasant and noisy place. Recently after trying to be calm and accepting that my disease is not something I have total control of, my symptoms miraculously have become much milder. I think there is a lot of background stress when trying to figure out an answer for every problem we have, even when you are not feeling it consciously. Stress is a trigger for a lot of neurological problems.

Also I wear headphones very often. Especially when I am out and about. They are tremendous help for me to fight off dizziness and maintain my gait.

Thanks Anna I will definitely try headphones, I am using a 3 wheeled walker are you using one? or do you manage without? My dizziness is when I stand and if I try to look up x

Hidden
Hidden

Hello I to have Cerebellar Ataxia since 1997 I have falls just like you and also my memory is not as good as it used to be.

stjamesangel
stjamesangel
in reply to Hidden

Thank you, I have also noticed my memory is not so good, at least I know now that I haven't imagined it

Angela

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