I recently underwent a sleep study. I never even thought of having any sleep problems, but my GP had some experience w/ Sleep Apnea and thought this might be contributing to my problems. I don:t think I slept at all that night, but they say I did, and that i showed signs of sleep apnea. Now Dr.has prescribed CPap machine for me to use at night. I don't expect it to help w/ ataxia symptoms...but who knows. Has anyone else had any experience along these lines?
Have to give Dr. credit. She did check for Celiac Disease at my request. This came out negative,but she didn't discourage me from trying a gluten free diet. She even said that gluten free would make anyone feel better. i started that tonight. It is a scary undertaking for me.
I also have ataxia symptoms and was referred for a sleep study. Although I knew I did have some difficulties with sleep as well I didn't think the sleep study would be very helpful. Anyway the sleep study did not show any sleep apnea but it did confirm my RLS, showed Periodic Limb Movements and chin movement during REM which my sleep specialist says is quite unusual. It was the sleep specialist that referred me for MRI and to neuro. The neuro has now diagnosed "Silent Migraines" as causing my symptoms and prescribed a preventative medication. The sleep specialist wants me to undergo a more detailed sleep study to see whether or not I have Narcolepsy. The research that I have done so far certainly indicates that sleep disorders including sleep apnea, can be associated with order neurological disorders with ataxia symptoms.
I was diagnosed with Idiopathic Cerebellar Ataxia in sept 2008. In April this year I was admitted to the ITU at the Central Middlesex Hospital till July with respiratory infection and cardiac arrest…I was then givens a c pap machine to use daily at night.
A neurologist thought I should look at MSA but my neurologist at Queen Square said it must be CA…I am worried and confused. I have a problem with emptying my bladder…last night I had a nosebleed for the firßt time in my life…it’s all scary…what do I do?
I have ataxia as part of the neurological damage done to me by Lyme disease. Lyme disease is the one of the fastest growing illnesses in the United States, apparently because of global climate change (ticks like it warm). In fact, it's possible that mosquitoes can pass on Lyme. Many many people out there have Lyme and don't know it.. :( Have you ever been tested? Just be aware that the Lyme disease tests are NOT accurate! You can be negative in bloodwork and STILL have Lyme.
Lyme triggered multiple autoimmune diseases in me, I was dx with celiac or gluten intolerance (even though all tests were negative; celiac tests are just as inaccurate as Lyme disease tests!) and went gluten free in 2008. I was also dx with sleep apnea in 2009 and given a CPAP to use. Please don't be scared of being gluten free, there are many gluten free products in the market (Udi's bread is WONDERFUL), and there are tons of websites to help! Here are some websites that helped me immensely:
Patsy, Dr. told me that you can have your eyes open and still be napping, and maybe all of a sudden wonder how you got where you are. I likened it to a student years ago who had petit mal seizures and while I could see no effects of it, he/she would be unaware that I had called out the previous spelling word.
Now hubby tells me that sometimes he has observed me not breathing in sleep or breathing very little. For the past year I have reverted to sleep talking--which I haven't done for over 40 yrs. previously. It is in connection with vivid dreams which are sometimes nightmares.
Patsy said:
that's very interesting - I had not thought about it before but I do wake myself up when snoring.
I do fall asleep when watching tv but my concentration when driving would not allow me to fall asleep.
I have nosebleeds sometimes frequently - sometimes with months inbetween but just thought this is another problem of getting old!!
Hi! my first reaction was that something is causing a sore or irritation that is bleeding or aspirin or blood thinner is involved, but I do know there is such a thing as spontaneous nosebleeds--in fact one of the worst nosebleeds I ever saw was a child who had spontaneous nosebleed.
I know this is really scary for you. I would talk to the doctor about it--what to do, what causes it, etc. Of course any wound around the mouth or nose bleeds more profusely for what it is than somewhere else. Maybe knowing that can help with the panic.
Has the cpap helped any with the ataxia symptoms?
joehamed said:
I was diagnosed with Idiopathic Cerebellar Ataxia in sept 2008. In April this year I was admitted to the ITU at the Central Middlesex Hospital till July with respiratory infection and cardiac arrest....I was then givens a c pap machine to use daily at night. A neurologist thought I should look at MSA but my neurologist at Queen Square said it must be CA..I am worried and confused. I have a problem with emptying my bladder......last night I had a nosebleed for the firßt time in my life....it's all scary..what do I do?
Thank you for all the links. One of my daughters is gluten free. She handles it real well, too. Of course, she can bake bread for the family or someone else and never touch it herself One problem I have is having so much on hand in my freezer and pantry. We were not planning on spending much for groceries in the near future. Also have been eating lunch at the local Sr. Center--that would not be possible on a gluten free diet.
Thanks again--I'm off to check out some of these sights.
JoAnn O'Linger-Luscusk said:
I have ataxia as part of the neurological damage done to me by Lyme disease. Lyme disease is the one of the fastest growing illnesses in the United States, apparently because of global climate change (ticks like it warm). In fact, it's possible that mosquitoes can pass on Lyme. Many many people out there have Lyme and don't know it.. :( Have you ever been tested? Just be aware that the Lyme disease tests are NOT accurate! You can be negative in bloodwork and STILL have Lyme.
Lyme triggered multiple autoimmune diseases in me, I was dx with celiac or gluten intolerance (even though all tests were negative; celiac tests are just as inaccurate as Lyme disease tests!) and went gluten free in 2008. I was also dx with sleep apnea in 2009 and given a CPAP to use. Please don't be scared of being gluten free, there are many gluten free products in the market (Udi's bread is WONDERFUL), and there are tons of websites to help! Here are some websites that helped me immensely:
I was diagnosed 81/2 years ago with sporadic (idiopathic) cerebellar ataxia. About that same time, I also had a sleep study and found out I had sleep apnea. I had taken a trip to Europe with my mom and sisters. I roomed with one sister, who said I snored and stopped breathing several times during the night. I had wondered for a few years why I was always tired and I'd wake up with a dull headache (lack of oxygen to the brain), Anyway, I've been on a C-Pap machine for 8 1/2 years, and I'm sorry to say, it's had no effect on my ataxia, although I'm less tired, which is a positive! I hope it helps your ataxia! FYI I've done some research and found out that many people with ataxia have sleep apnea. I asked my neurologist, and he concurred. It has something to do with REM sleep (when a person is in their deepest sleep cycle). Yes, even if you do not have specific gluten ataxia, a gluten-free diet WILL make you feel better! There are many people on this site that have gluten ataxia that can share their advice. Also, Dr. Oz has a television show in my area, and he had a doctor/researcher on yesterday that said wheat is toxic. If you Google "Dr.Oz", you can read about the show from 12/03/12. Interesting stuff! Best wishes! ;o)
Rose, I had about decided that the sleep apnea was either another issue in itself or another thing that goes along with the ataxia. I am expecting the cpap machine to help me feel better or less tired, but not expecting any miracles on recovery from the ataxia. This in spite of the vivid dream I had when first trying the breathing machine--In the dream I woke up completely "cured" of the ataxia. lol
I have been on a Meat Eggs Veggies Yogurt diet for about a year some 20 years ago. Felt better than ever then so expect the same resuts by going gluten free--just have to get in gear and do it.
rose said:
I was diagnosed 81/2 years ago with sporadic (idiopathic) cerebellar ataxia. About that same time, I also had a sleep study and found out I had sleep apnea. I had taken a trip to Europe with my mom and sisters. I roomed with one sister, who said I snored and stopped breathing several times during the night. I had wondered for a few years why I was always tired and I'd wake up with a dull headache (lack of oxygen to the brain), Anyway, I've been on a C-Pap machine for 8 1/2 years, and I'm sorry to say, it's had no effect on my ataxia, although I'm less tired, which is a positive! I hope it helps your ataxia! FYI I've done some research and found out that many people with ataxia have sleep apnea. I asked my neurologist, and he concurred. It has something to do with REM sleep (when a person is in their deepest sleep cycle). Yes, even if you do not have specific gluten ataxia, a gluten-free diet WILL make you feel better! There are many people on this site that have gluten ataxia that can share their advice. Also, Dr. Oz has a television show in my area, and he had a doctor/researcher on yesterday that said wheat is toxic. If you Google "Dr.Oz", you can read about the show from 12/03/12. Interesting stuff! Best wishes! ;o)
Dear Granny H., Ha!!!... maybe it was the "power of positive thinking" that you woke up thinking you were cured of ataxia...,LOL! FYI, the C-Pap machine takes a while to get use to (at least it did for me), but don't give up! Sleep apnea has serious physical consequences! Being less tired helps physically and emotionally in so many ways. I believe it helps me "deal" with my ataxia better! I'm just saying... ;o)
I also have sleep apnea, as if it isn't bad enough that I already have been diagnosed with cerebellar ataxia... Don't get me wrong, i'm not going to complain, and goodness knows, it could always be worse. I work very hard at NOT falling into the "woe is me" mentality, and I admit that it can be hard... I am only human, and I do fail... (A positive outlook, always looking to the brighter side of things, and definitly humor help, A LOT!) I hope everyone had a good thanksgiving, and I still can't believe it's already December...!
(BTW, this is the first time I've ever replied to a discussion... And thanks to "granny h" for posting...! Bye4now! :-)
Hi friendlyface 120000, How kind of you to hope everyone had a good Thanksgiving! Yes, it's hard to believe it's December and Christmas is just around the corner! You're so right, a positive outlook, as well as humor is half the battle! Best wishes to you! ;o)
Funny you should mention sleep apnea. Apparently my wife said I have been suffering from it for years but never thought of getting any treatment as it is not that bad. It is bad enough for my wife to wake me up to remind me to breath. I never associated with Ataxia. May be it is one of the symptoms of Ataxia.
I was diagnosed with ataxia (unknown cause) eleven years ago, and at the same time I was also diagnosed with sleep apnea (through a sleep study). I had taken a trip overseas with my two sisters and mom and shared a room in Paris with one sister. She said I gasped for breath and stopped breathing several times during the night. My neurologist said that for some reason some people with ataxia also have sleep apnea. I've used a C-Pap machine at night ever since. For me, it took about a year to get use to it, but the pay-off has been I'm not tired all the time (except for the tiredness caused by having ataxia, which is a different kind of tiredness, at least for me). ;o)