i know nothing about ataxia. it seems there are thousands of different types. my doctor told me there were no medications that would help me, but there has to be something that will at least help my dizziness. anyone out there have any ideas? there has to be something!
Tackling dizziness depends on its cause - inner ear problems or cerebellar problems - do you know the cause? There ARE medications to help dizziness/vertigo. If your doctor won't help you could always try another doctor! ....
i have been to an ent doctor as well as a neurologist and both say it is cerebellar.
I have found eliminating all processed foods from my diet has helped with dizziness.
Hi Ive,
A few questions before I can recommend anything. What is the doctor's diagnosis? Is it cerebellar ataxia? Has MRI revealed anything wrong with your cerebellum?
I have cerebellum ataxia (confirmed by MRI) and go to Mass General Hospital in Boston. They have an ataxia unit there and my doctor did genetic testing and I am trying different meds to see if they effect the ataxia. My first experiment was with Zoloft. It had no effect on my ataxia but my doctor says there are other meds we can try.
i have had constant back pain for many years and have been disabled because of it. my doctors implanted a pain stimulator in my back. i tell you all of that to say i cannot have an mri. i don't know if i should have it taken out. i have not used it in months. is an mri important to the diagnosis? will an mri help find some relief?
Debora Warner said:
I have cerebellum ataxia (confirmed by MRI) and go to Mass General Hospital in Boston. They have an ataxia unit there and my doctor did genetic testing and I am trying different meds to see if they effect the ataxia. My first experiment was with Zoloft. It had no effect on my ataxia but my doctor says there are other meds we can try.
I've fallen: I have found diet and given a window of opportunity i.e. a 'good day' exorcise...anything to release your bodies internal chemicals. Question: If zoloft did not do anything for ataxia, what did it do and why were you prescribed zoloft. My doc just did this as well and I have yet to pick it up. Thanks......
I have vestibular episodic ataxia, triggered by visual scanning. Was diagnosed by a neuro-opthalmologist in 2003, five years after onset of symptoms of double vision, dizziness and nausea. Tried Neurontin, made me sleep 12-14 hrs, recently tried Diamox, made my blood pressure drop to more dizzying levels. Can’t say whether either drug improved episodes.
Food definitely affects my nausea, and when nauseated, I’m not paying so much attention to the affect on dizziness. I have eliminated processed foods, gluten, sugar, coffee, corn, and soy. Organically grown produce and chicken, wild caught fish, and grass fed meat are the mainstays of my diet. My grocer makes juice from organic vegetables, which I mix with organic kefir for a quick smoothie. All this effort is made tolerable by a daily dose of bittersweet chocolate.
Dizzy in California
Julie in Colorado said:
I have found eliminating all processed foods from my diet has helped with dizziness.
PCP offered zoloft if needed for depression. We decided on exercise and doing for others first. So far depression has not been an on going problem. She suggested trying different motion sickness pills (OTC) for dizziness for a week at a time. I tried dramamine for a couple of days and if anything I was dizzier than ever so stopped it and haven't tried anything else so far. My PCP is trying her best to help me but we are groping at straws at this point. Short of going to Houston and spending bigs bucks for someone out of network for my insurance I see no other help. I figiure at this point I could only help their research data, with no help for me anyway.
Research shows that exercise is essential to keep the brain making new replacement cells and sending them to the areas where they are naturally dying off. “Use it or lose it” means just that. Yoga on the floor or in a chair works great for stretching and strengthening. The challenge I find with ataxia is how to get enough motion to raise the heart rate for a cardio work out. I use a stationary recumbent bicycle with a full back support and handles on the sides of a bench seat.
The most helpful treatment I have found in 15 years is CranioSacral Therapy, which is provided by my licensed physical therapist. It is considered alternative medicine, but has helped restore reflexes that were inactive, especially in my ankles, that caused me to fall often. This therapy was founded and is taught by the Upledger Institute in Florida, USA. I found my provider by searching the Upledger website for trainees in my zip code. I offer that information with the caution that my PT had taken every course offered by Upledger, and had interned in a head trauma clinic before opening her own PT practice more than 20 years ago.
I’m sharing this because, when I read the reports by Johns Hopkins recommending what kind of exercise I should be getting, it is what I have already been getting.
Wishing you well.
Dizzy
s wayman said:
I've fallen: I have found diet and given a window of opportunity i.e. a 'good day' exorcise...anything to release your bodies internal chemicals. Question: If zoloft did not do anything for ataxia, what did it do and why were you prescribed zoloft. My doc just did this as well and I have yet to pick it up. Thanks......
The Zoloft works for some people. It acts on serotonin reuptake, making more available. Since there is no axatia medication it is worth a try. I had side effects from 50 mg. of Zoloft and was really tired.
s wayman said:
I've fallen: I have found diet and given a window of opportunity i.e. a 'good day' exorcise...anything to release your bodies internal chemicals. Question: If zoloft did not do anything for ataxia, what did it do and why were you prescribed zoloft. My doc just did this as well and I have yet to pick it up. Thanks......
I took brain supplements for several years, had 6 months of acupuncture, and went to a chiropractor for 2 years. I also have been seeing a osteopath for 5 years that is trained in Sacral Cranial manipulation. I have been to several Physical Therapists, conventional and alternative. I also had Reiki, Raindrop Therapy, and many kinds of Energy Therapy. I exercise daily by holding on to the elliptical or riding a recumbent cycle. My ataxia is progressing vert slowly.
dizzyinCA said:
Research shows that exercise is essential to keep the brain making new replacement cells and sending them to the areas where they are naturally dying off. "Use it or lose it" means just that. Yoga on the floor or in a chair works great for stretching and strengthening. The challenge I find with ataxia is how to get enough motion to raise the heart rate for a cardio work out. I use a stationary recumbent bicycle with a full back support and handles on the sides of a bench seat.
The most helpful treatment I have found in 15 years is CranioSacral Therapy, which is provided by my licensed physical therapist. It is considered alternative medicine, but has helped restore reflexes that were inactive, especially in my ankles, that caused me to fall often. This therapy was founded and is taught by the Upledger Institute in Florida, USA. I found my provider by searching the Upledger website for trainees in my zip code. I offer that information with the caution that my PT had taken every course offered by Upledger, and had interned in a head trauma clinic before opening her own PT practice more than 20 years ago.
I'm sharing this because, when I read the reports by Johns Hopkins recommending what kind of exercise I should be getting, it is what I have already been getting.
Wishing you well.
Dizzy
s wayman said:I've fallen: I have found diet and given a window of opportunity i.e. a 'good day' exorcise...anything to release your bodies internal chemicals. Question: If zoloft did not do anything for ataxia, what did it do and why were you prescribed zoloft. My doc just did this as well and I have yet to pick it up. Thanks......
Zoloft is not a drug specially for Ataxia. Zoloft is an anti-depressant of the selective serotonin reuptake inhibitor (SSRI). It is primarily prescribed for major depressive disorder in adult outpatients as well as obsessive-compulsive, panic and social anxiety disorders in both adults and children. The efficacy of Zoloft for depression is similar to that of older tricyclic antidepressants, but its side effects are much less pronounced. Evidence suggests that Zoloft may work better than Prozac for some subtypes of depression. For most kinds of ataxia, a treatment or cure for the disease is not yet available, so the focus is on identifying symptoms related to or caused by the ataxia, and treating those symptoms. Doctors normally prescribe Zoloft to help patients to live and cope with the symptoms. On the other hand depressive symptoms caused by decreased motor function and central dysfunction due to neurodegeneration has yet to be proved. There is no evidence to suggest that the depressive symptoms are reactive to the stress due to decreased motor function. This article may help you understand why some doctors prescribe Zoloft http://www.karger.com/Article/Abstract/314406
5 Years ago, the Docs at Mass. General recommended Diamox (Acetazolamide) for my ataxia. It is a diuretic. They said in some cases of Ataxia, it actually reduces the frequency of attacks. For those that also have vestibular issues like me, it definitely reduced my dizziness; and keeps my head clearer and less inflammed.
Hi Buffalo Bill!I
'It keeps my head clearer' - Do you mean foggy head clearer? Some days I can hardly think at all!
Buffalo Bill said:
5 Years ago, the Docs at Mass. General recommended Diamox (Acetazolamide) for my ataxia. It is a diuretic. They said in some cases of Ataxia, it actually reduces the frequency of attacks. For those that also have vestibular issues like me, it definitely reduced my dizziness; and keeps my head clearer and less inflammed.
Yes, my brain fog is less on the diuretic. Without it, I always have a head fullness similar to a hangover that makes it very difficult to think and often leads to a nasty headache. The diuretic reduces that sense of fullness
Beryl Park said:
Hi Buffalo Bill!I
'It keeps my head clearer' - Do you mean foggy head clearer? Some days I can hardly think at all!
Buffalo Bill said:5 Years ago, the Docs at Mass. General recommended Diamox (Acetazolamide) for my ataxia. It is a diuretic. They said in some cases of Ataxia, it actually reduces the frequency of attacks. For those that also have vestibular issues like me, it definitely reduced my dizziness; and keeps my head clearer and less inflammed.
I'm as clueless as you are. My neurologist gets me in and out then refers me to Dartmouth Hitchcock...He tells me to read about it on the internet....So discouraging!
Would you say more about your vestibular symptoms? You are the first person to mention having this type. I have vestibular episodic ataxia, triggered by visual scanning. My eyes don't track together and I have double vision in the right eye. I tried Diamox, but did not get a good result.
Dizzy in CA
Buffalo Bill said:
5 Years ago, the Docs at Mass. General recommended Diamox (Acetazolamide) for my ataxia. It is a diuretic. They said in some cases of Ataxia, it actually reduces the frequency of attacks. For those that also have vestibular issues like me, it definitely reduced my dizziness; and keeps my head clearer and less inflammed.
Zoloft is an anti-depressant. I take the generic form of it, Sertraline, and have taken this for 17 years (originally I took Zoloft, but switched to the generic brand a few years ago). I started taking it due to the side effects of a heart medication I was on, that caused clinical depression. I had a heart arrythmia that I eventually had surgery on (to repair it), Then we found out my first husband had terminal cancer, so although my heart was fixed, I stayed on the anti-depressant (per my doctor). My husband eventually died, and I continued to raise our two children, who were 12 and 14 years at the time of his death. I was diagnosed with ataxia ten years ago. To make a long story shorter, I don't know if the anti-depressant helps my ataxia, other than helping me deal with it better. Of course, I've taken it for so many years, I don't remember what it feels like not to be on it...,ha!