Not sure if you get dizzy or not but mine seems to be 24 - 7 any advice on hat you do to helpit would be great! Thanks!
I get the same and found that it gets worse when i’m fatigued or stressed ,so i try to rest alot even if its just 10mins every hour it helps me to cope better with it. Also i walk with a cane it seems to help as my brain has a few more milliseconds to process where the ground is in relation to my feet this helps me walk with the dizzy but i have to look at my feet alot to make sure they are where i think they are. I hope this helps a little
I order Sturgeron from the UK, it's a common travel sickness pill. I also have found Endep helpful, it's an antidepressant but is known to help migraines and I find it helps with my balance. I don't sleep lying down, lots of pillow and stress makes it worse so like Nicky rest is key.
I don't know if this will help because I also have cancer, but I went through about six months where the dizziness was so bad I couldn't function. Finally they found it was my adrenal glands and when they put me on the correct medicine, it went away. Being dizzy is the worst. It really impacts your life. Jackie
What was happening with your Adrenal's Jackie, if you don't mind me asking? Was it cancer related or were they just playing up. I'd be interested to know what the treatment was. I'm suspicious about my own adrenal function. Thanks
puppyteeth said:
I don't know if this will help because I also have cancer, but I went through about six months where the dizziness was so bad I couldn't function. Finally they found it was my adrenal glands and when they put me on the correct medicine, it went away. Being dizzy is the worst. It really impacts your life. Jackie
I'm not sure what caused my adrenal glands to stop functioning properly. They didn't produce enough cortisol so they put me on 7.5 mgs of prednisone a day and it worked! I had to see an endrochronolgist for it. They found out through blood tests. They had me fast, then drew blood three times a half hour apart. Before that, I had trouble even walking to the bathroom.
Hi - I had really awful dizziness and low blood sugar type dizziness as well, which have now stopped since being gluten free - I have gluten ataxia and this was one of my symptoms so Im really flagging it to make sure that you have been tested for gluten (gliadin) antibodies.
i do sympathise with you and hope you get it sorted as its really an awful symptom - I felt like I was on a boat at sea sometimes!
Gill
I have to deal with dizziness or I should say light headedness allot. When it get's really bad I use pressure point bracelets so I can move more with head exercises, moving my head back and forth 30 seconds resting in between and side to side so I can get used to movements. I too feel better after a scheduled nap. Regular deep breathing seems to help some. But I really feel that not having Refined sugars help with this allot. I make sure to keep my foods as natural and basic as possible. No Gluten or anything processed. If I have a chip it gets worse for me.
But I find your question very interesting and very intriguing to me.I too wonder what others have to say about this. I'm always looking to improve upon what I'm doing to see if something I can add that will work for me. I think everything is just trial and error to see what works.
I just was complaining about this to my Dr. about the lightheadedness also and he prescribe PT. So I'll let you know what comes from that if that helps any. Good luck finding something that helps you too! I hate that lightheadedness the most about this SCA.
I am not sure if this helps because dizziness does seem to be part of Ataxia as others have said already.
I originally went to the GP because I was so dizzy and had become so unsteady. I really thought I had something wrong with my inner ear like Ménière’s disease which I thought was curable. An MRI confirmed that I had Ataxia and I thought that this dreadful dizziness was one of the symptoms .
In consultation with my neurologist he referred me to one of his colleagues in the Audio Vestibular department. After a few tests he established that I also had BPPV. In short vertigo with nystagmus. He gave me a short exercise to do, which I did for a few days and the dizziness disappeared.
It returns after a month or so and I do the exercises again.
Of course I still have Ataxia and nystagmus (which seems to be shared by both conditions) but life is so much better without the dizziness. Yours may not be the same as mine but you could mention it to your neurologist and ask for a referral to the Audio Vestibular department.
I do hope that you can get rid of the dizziness it is so debilitating.
All the best for the future.
Lockie
I will add my two cents to this. I feel that Lockie is right.
My lightheadness, (not dizziness or vertigo which involve feeling of walls or floors moving around you) came instantly after my cerebellar stroke, two years and a half ago. Since then, I have felt “drunk” from morning to night, non stop. My only respite is when I sleep. But the second I get up, there it is again. My doctor said that my stroke had destroyed my center of balance and coordination and that no medicine would help this. I did tried a few, but nothing helped. Another neurologist, ataxia specialist, told me the same thing. Vestibular problems (I was checked for those too, but my ears are fine) can be helped. Not problems caused by cerebellar lesions. I supposed that the symptoms differ, depending where the lesions are on your brain.
This is my understanding.
Marjorie, I hope you find something that will help you. I can handle the tremors, but have a tough time with this awful dizziness.
My best to all of you.
Wow! Lockie what kind of exercise do you do?
Lockie said:
I am not sure if this helps because dizziness does seem to be part of Ataxia as others have said already.
I originally went to the GP because I was so dizzy and had become so unsteady. I really thought I had something wrong with my inner ear like Ménière's disease which I thought was curable. An MRI confirmed that I had Ataxia and I thought that this dreadful dizziness was one of the symptoms .
In consultation with my neurologist he referred me to one of his colleagues in the Audio Vestibular department. After a few tests he established that I also had BPPV. In short vertigo with nystagmus. He gave me a short exercise to do, which I did for a few days and the dizziness disappeared.
It returns after a month or so and I do the exercises again.
Of course I still have Ataxia and nystagmus (which seems to be shared by both conditions) but life is so much better without the dizziness. Yours may not be the same as mine but you could mention it to your neurologist and ask for a referral to the Audio Vestibular department.
I do hope that you can get rid of the dizziness it is so debilitating.
All the best for the future.
Lockie
Hi,
I am getting dizzy/lightheaded very often. I have been diagnosed for Orthostatic Hypotension (OH). When I get up suddenly from sitting position or from crouching down like to a low supermarket shelf, then I get a feeling that is neither dizzy nor lightheaded but getting scared of dying as everything gets grey and seems to move away and, at the same time, ataxic, too. It is my own believe that not enough blood gets to the brain and the Cerebellum cannot function. I get ataxic at other times, too, but the worst attacks of ataxia are always during those OH attacks.
I wonder if some of you in this list may not have OH, too.
Oh Yes Clonazepam helps my balance too, but Dr's don't like prescribing in general as it's a benzodiazepine drug, but I don't care because it helps.
"Gamma-aminobutyric acid (GABA) is an inhibitory neurotransmitter in the vestibular system.6 Benzodiazepines enhance the action of GABA in the central nervous system (CNS) and are effective in relieving vertigo and anxiety."
Also Lockie is referring to exercises like Epley Maneuver and the Dix-Hallpike Maneuve.
I also have an app on my phone called VertiGO, it consists of some exercises you can do at home.
Hi Marjorie,
I use the width of a double bed for my exercise.
First I set the position by lying on my back with my head over the side of the bed with my head pointing pointing towards the floor.
- Sit upright for 40 seconds.
- Lie back with your head over the edge for 40 seconds. Keeping eyes open so that you can observe the effects. (During this part of the exercise I feel very dizzy at the count of 20 which seems to clear before the count of 40. It doesn’t always happen so don’t feel disappointed if you don’t feel the same.
- Tuck your chin into your chest for 40 seconds. I put my hands behind my head and pull my chin to my chest.
Repeat this sequence of exercises at least 5 times every day for a few days and see if there’s any improvement in your dizziness. Google BPPV there’s loads of information out there.
Cicina is right though, dizziness is part and parcel for most of us with Ataxia and that horrible shakey visual disturbance could be down to SCA. But it’s well worth giving it a try. On the internet it does say that patients going to their GP with vertigo can leave the surgery feeling cured from doing the exercise with their GP.
Best of Luck with the exercise.
Lockie
Just curious, is it dizziness or vertigo? There is a difference as mentioned above. I get both, but more often vertigo and oscillopsia (when my head or eyes move so does everything I’m looking at). I also had testing done at an audio/blame center. My vestibular nerve is over 90% damaged. I take .5mg of klonopin every night, and gabapentin. Both have helped enormously! I’m now also on Diamox, and recently have discovered that migraines are a big trigger even when I don’t feel them. I am gluten free, dairy free, and egg free-but only because I have celiac disease and allergies. They have tested and it is not related to my ataxia. My point is that it could be many things, but first it is important to know if it is dizziness our vertigo, and then go from there.
Here is a quote from Webmd to explain the difference between dizziness and vertigo.
" Telling the Difference Between Vertigo and Dizziness
People often use the word “dizziness” when they are talking about a variety of symptoms, including:
Vertigo (a feeling of spinning or whirling when you are not actually moving).
Unsteadiness (a sense of imbalance or staggering when standing or walking). This sometimes is called disequilibrium.
Lightheadedness or feeling as if you are about to faint (presyncope). This may mean there is a heart problem or low blood pressure.
Dizziness caused by breathing too rapidly (hyperventilation) or anxiety.
It is important for your doctor to know which of these symptoms you mean when you say, “I am dizzy,” because the cause, diagnosis, and treatment are different for each symptom. When someone complains of dizziness, the symptom is vertigo only about half of the time.
For more information about whether your symptom really is vertigo, see the topic Dizziness: Lightheadedness and Vertigo. It can help you tell the difference between vertigo and other types of dizziness.
By Healthwise Staff
Primary Medical Reviewer Anne C. Poinier, MD - Internal Medicine
Specialist Medical Reviewer Barrie J. Hurwitz, MD - Neurology
Last Revised April 12, 2012
WebMD Medical Reference from Healthwise
Last Updated: April 12, 2012
This information is not intended to replace the advice of a doctor. Healthwise disclaims any liability for the decisions you make based on this information."
Excellent information. Thanks for posting.
Cicina said:
Here is a quote from Webmd to explain the difference between dizziness and vertigo.
" Telling the Difference Between Vertigo and Dizziness
People often use the word "dizziness" when they are talking about a variety of symptoms, including:
Vertigo (a feeling of spinning or whirling when you are not actually moving).
Unsteadiness (a sense of imbalance or staggering when standing or walking). This sometimes is called disequilibrium.
Lightheadedness or feeling as if you are about to faint (presyncope). This may mean there is a heart problem or low blood pressure.
Dizziness caused by breathing too rapidly (hyperventilation) or anxiety.
It is important for your doctor to know which of these symptoms you mean when you say, "I am dizzy," because the cause, diagnosis, and treatment are different for each symptom. When someone complains of dizziness, the symptom is vertigo only about half of the time.
For more information about whether your symptom really is vertigo, see the topic Dizziness: Lightheadedness and Vertigo. It can help you tell the difference between vertigo and other types of dizziness.
By Healthwise Staff
Primary Medical Reviewer Anne C. Poinier, MD - Internal Medicine
Specialist Medical Reviewer Barrie J. Hurwitz, MD - Neurology
Last Revised April 12, 2012
WebMD Medical Reference from Healthwise
Last Updated: April 12, 2012
This information is not intended to replace the advice of a doctor. Healthwise disclaims any liability for the decisions you make based on this information."
I have the same problem. I liken it to motion sickness. I believe that your cerebellum is getting to much info to handle in it’s weakened state. I try to concentrate on the task at hand and fade out any extra stimulus. I am trying to keep fit and mobile by walking my dog. Even for the short distances I can handle. If I “site see” I will get dizzy. But if I concentrate on putting foot on front of another I’m ok.
my name is john n and what seems to help dizziness is a pair of motion sickness wristbands (that you use for an airplane or boat) and can probably get in a drug store. try it they are cheap
my name is john c.what helps are wristbands for travel motion sickness. buy in drug store