my biggest problem with ataxia is dizziness. i get in the bed and the room spins. i get sick at my stomach and needless to say, i don't sleep. any suggestions? my dr said the side effects of the ataxia medications make them prohibitive, but i have got to have some help. any suggestions would be greatly appreciated. thanks!
I deal with alot of dizzyness constantly! I find some releif with doing quite a few things combining them seem to help me. I stoped a few of them for a while and it got worse, so I have to make sure I play these little games so the outcome works for me.
1) I really limit my head movements thought the day. I don't look around while walking or sitting etc.
2) I meditate in the morning to clear my mind and head and over time it acumulates.
3) I make sure I'm not deficent in any vitimins or minerals daily and schedual my meals 4-6 hours apart. Nutrition makes a diffrence.
4) I do exersizes of focused head movements but only a few at a time.
-I start with just my eye's up down side to side very slowly-Doing it the first few times made me more dizzy but I kept pushing through it to become stronger.
Then Yoga movements-lay on the floor turn head side to side with lots of time to adjust in between. I limit it and almost save up to do this at one time. I think of a level a construction worker uses is in my brain. When I stand from getting up I give myself a min or so and visulise the bubble going into the center before I walk. I close my eye's while I turn my head. I practice doing exercises and being still with my eye's closed and have been working at adding more time.
These things do not intirely take the dizzyness away for me but they sure help me allot. I also take vit B complex and monitor my stress as much as I can. I won't watch the news for exsample cause garbage in garbage out effects me more than I used to think it did.
5) I used to prop up my pillow allot to sleep that way and that helped.Over time too I have been able to lower it. You will see what your comfort level is.
I now tend to stay away from things (I find) that make me more dizzy and think of other ways to do them. I think it's just trial and error.
Sometimes I just get fed up being dizzy contantly too. For exsample watching tv or being on a computer wigs my eye's out and starts me getting more dizzy. But I try not to fight it because it tends to get worse for me if I do. I go with what my body wants. I do take naps sometimes and that helps some.
I just went through a long period of dizzyness and found out that I had allergies too now (which is new for me) I guess this year they are worse than they have been in the passed. I have been taking a generic clariton daily with food and have to have a nasil spray but only take that when I really really need it. I'm using eye drops. They are natural and called Genteal by cvs drug store. My eye Dr said they are not habit forming nor do they have any ingrediance that make my eyes need it. I didn't realize just how much it could help my dizzyness.
I would just try diffrent things to see what works for you because we are all diffrent even with ataxia and please let me know if you find more things that I can try too as long as it's natural that is! I'm game! :0)
vertigo/dizziness/nausea can be caused by inner - ear problems or cerebellar problems. Has you doctor decided which one is the cause? Here in the UK Ataxia specialists use Betahistine or Cinnarizine amongst other treatments.
As a vertigo sufferer myself, I really sympathise & wish you all the best.
I went down the Ear.Nose and TThroat route first.That was eliminated.
The room spins round with both..With Ataxia it is the eyes not co-ordinating properly. If is Benign Positional Vertigo it can be cured by drugs and manipulation.Mine was Cerebellar Ataxia affecting the brain.
Labyrinthitis may be explored here in the uk. That is an infection of the inner ear.Have you had a cold or virus recently?
Both problems can make you feel dizzy.
I took Nytol temporarily for sleep problems.
There is also a website called Dizzytimes in the uk which helped.
I also deal with constant dizziness, but luckily, not at night. In fact in the morning, when I wake up, I feel normal. But the minute I get up and start moving around, there it goes again…
As Jeannie said, I avoid turning my head as much as possible. I turn my entire body instead. When sitting to watch TV for instance, I make sure I rest my head on the chair. It “anchors” me down. When I walk in my house, if I am near a wall, is lightly put my hand on the wall, not for support, but to ground myself. I have noticed that keeping my hand on something that does not move helps.
I avoid very noisy and busy places as noise and commotion make me feel worst.
Of all my symptoms, I think the dizziness is the worst to deal with.
Isaw on your profile, that you are from Georgia. Have you found an Ataxia specialist in your area? There is a good one in Atlanta. He is actually on the Board of the NAF ( National Ataxia Foundation). His name is Dr George Wilmot and he practices at Emory University Hospital. He is very nice. But he is very busy and I had to wait 4 months to see him…
If your dizziness is from an ear problem, chances are it can be corrected, check with an ENT if you have not done that yet.
I wish you good luck in finding some relief. Hang in there !
I also have CA. My dizziness is periodic not continuous. When it happens I “spot” turn my head - look at a single spot, blink and move your head while blinking, reopen your eyes and repeat as required. With practice it becomes more fluid and rapid.
Great comprehensive answers Jeanne & Cicina!
Good idea Debus,
I think ballet dancers and ice skaters do that to avoid falling flat on their face after twirling around…
Thanks for your commen Kathy G.
I find I cannot turn round in the shower.Every time I move my head there is a problem.If i was not hanging on to the hand rail I would go giddy,wobble and fall.Not very dignified.Interesting about ballet dancers and ice skaters.
I only get dizzy when I take certain meds. Like cold pills, chanxax. Yea Marie I have a hard time turning in the shower also. Any pills that affect the brain I cant take. It seems that way anyways.
I felt like this, infact I found it difficult to cross roads, had stopped driving the car, couldn’t bear supermarkets as the shelves danced and I couldn’t focus on any products, felt sick like a hangover after I had got out of bed and thought that there must be something else than Ataxiia causing this.
My first neurologist sent me to Ear, Nose and Throat. They said that it was obviously my Ataxia that was causing it. I was not satisfied and asked my family doctor to refer me to the Ataxia clinic at Sheffield.
Dr Hadjivassiliou at Sheffield referred me to the Audio Vestibular dept. where I was diagnosed as having BPPV (vertigo) and was given some exercises to do, and a visit to the physiotherapist. He told me that some of the exercises would make me feel really yuk but I must experience this and not to bother with the exercises that didn’t make me sick.
I found this the most sickening and effective -
A) Lie across a double bed with your head over the side (40 seconds)
B) Chin into chest for 40 seconds (I use my hands to support my head)
C) Sit upright and hold for 40 seconds
Repeat the sequence 5 times
I began to feel the benefit straight away- I only did the exercises for 3 weeks and then occasionally if I feel the need.
I now feel normal - no dizziness.
That hangover feeling on a morning, I had felt for years (even before my diagnosis of Ataxia) now gone.
Mention BPPV to your neurologist.
From reading other people’s replies both Nystagmus and BPPV very often occur in Ataxia patients, please look into it.
My 11-year old daughter with cerebellar ataxia suffers from this also. Does anyone have any suggestion for flying. she practically has panic attacks as soon as she boards the plane and her hands get real sweaty. Thanks
I had ton's of fear and was able to overcome it. I remember a piolet offered a free video and papers I could print out and take with me while flying which helped. Sorry I tryed to find it by googling it and didn't come up with it but there are free video's etc if you google fear of flying.
I remember what really helped my anxiety allot was knowing ahead of time (and that I could re read while it was happening) what sounds it was making and not only why but what sound will come next so I could logically understand the funtions and not just go with my feelings about it.
Good luck finding something for her. I think every bit you can find can help. It's not fun to be a white knuckel flyer, I get that. I also now believe that God has a plan no matter what I do anyway, so I ask him to take the fear away so I don't feel it and I trust in him to help me with it! It comes down to how one believes if that helps or not. :0)
I was making the beds so while I remembered to do it, I tried you're exercises. Ugh, you do feel truely
disgusting! But, if that's what it takes.......!
Lockie said:
I felt like this, infact I found it difficult to cross roads, had stopped driving the car, couldn't bear supermarkets as the shelves danced and I couldn't focus on any products, felt sick like a hangover after I had got out of bed and thought that there must be something else than Ataxiia causing this.
My first neurologist sent me to Ear, Nose and Throat. They said that it was obviously my Ataxia that was causing it. I was not satisfied and asked my family doctor to refer me to the Ataxia clinic at Sheffield.
Dr Hadjivassiliou at Sheffield referred me to the Audio Vestibular dept. where I was diagnosed as having BPPV (vertigo) and was given some exercises to do, and a visit to the physiotherapist. He told me that some of the exercises would make me feel really yuk but I must experience this and not to bother with the exercises that didn't make me sick.
I found this the most sickening and effective -
A) Lie across a double bed with your head over the side (40 seconds)
B) Chin into chest for 40 seconds (I use my hands to support my head)
C) Sit upright and hold for 40 seconds
Repeat the sequence 5 times
I began to feel the benefit straight away- I only did the exercises for 3 weeks and then occasionally if I feel the need.
I now feel normal - no dizziness.
That hangover feeling on a morning, I had felt for years (even before my diagnosis of Ataxia) now gone.
Mention BPPV to your neurologist.
From reading other people's replies both Nystagmus and BPPV very often occur in Ataxia patients, please look into it.
Hi Beryl,
My physio said that you feel dizzy because your brain is getting mixed signals as all of your receptors aren't working in unison. This exercise will definitely help with BPPV.
My Audio Vestibular neurologist said it is chrystals in the ear canal that need dislodging. He likened it to those children's puzzles that have ball bearings that you carefully try to get back into their holes.
Don't be put off. Its well worth it.
Keep strong
Lockie