What does having ataxia do to your life?

@speechless623 I have Ataxia because my Cerebellum has areas of atrophy. My balance is horrible but for me, it’s the eye sight issue is devastating. I have double vision especially in the morning. It is with me all day and shows up when I look in any direction.
My ophthalmologist declared my eyes to be healthy He said my problem is my brain. Unfortunately, I can’t drive anymore. There are volunteers in my community who have been helping by taking me to doctor’s appointments.

I have had issues with paralysis and ataxia on and off for the past twelve years. My latest bout of ataxia and gait issues has lasted for the past six months. I have had no GI issues whatsoever but have just been diagnosed with Celiac Disease, which is believed to be the main cause of my ataxia, as it not only attacks the small intestine but can also change the cerebellum and spinal chord. I am throwing this out there in case it is relevant to anyone (there are certainly a number of reasons for ataxias to develop) but if you are looking for a root cause of ataxia and have not been tested for Celiac, it could be worth investigating. The department head of the Celiac Center in Columbia University, Dr. Peter Green, wrote a book, "Celiac Disease: A Hidden Epidemic". My GI doctor recommended this book and I'm so glad she did. My GI doctor has not personally seen my presentation of Celiac... but she knew that it is possible. This book reveals so much about what is known and unknown about gluten ataxia. I am only writing this, again, in hopes it could be helpful to someone who has unexplained reasons for ataxia, which I had for many years (with many visits to many neurologists, rheumatologists, physiatrists etc). I had no idea that I could have no digestive issues whatsoever and be so sick from something I was ingesting. I am hoping my condition improves, though I've only been "gluten free" for the past month. I hope you find answers and that your conditions improve!

I have ataxia from a Malaria drug called Lariam that I had to take before, during and after going to Africa in 1997. It is awful. I was always off balance and could not focus on anything. My boss changed all my lighting because florescent lighting would make it so much worse. I went to many doctors and they kept saying I had menaires. But nothing worked. Mayo clinic in Phoenix put me on clonazepam 1mg 3xday. It actually stopped it and eventually between the clonazepam and my brain rerouting with the clonazepam I did really well for 25 years. Then suddenly the doctors here decided that I should not take clonazepam because it is bad they said. But it worked. They took me off half of it and I was in Kansas visiting my granddaughter and great grandson and I apparently had fallen. I have no memory of any of it, I just woke up still hooked up to my feeding tube and pump when my granddaughter came in and started freaking out. She wanted to know how I got a black eye and bruises around my neck. I thought she was kidding until my great grandson came in an started crying and kept saying grandma hurt. I tried to sit up and when I put pressure on my left arm pain was awful. I ended up in icu with a crushed elbow and broken arm in 2 places and a concussion. Still to this day don't have any knowledge of what happened to me. They put Mr back on clonazepam and in time I felt normal again. Now new doctor wants me off of clonazepam again and it terrifies me.

Of our three adult children, only the younger daughter was fond to have Celiac disease in her late thirties. My mom had it, diagnosed in her senior years. After our daughter tested positive, I was tested but it was "inconclusive." But I chose to adapt to the GF lifestyle since I was indeed experiencing GI issues (painful and constant) as well as other problems. Definitely not easy eliminating all wheat products/grains, and it was especially difficult learning to use alternate grains for baking, but I did. Made a huge difference overall. Gone was the 24/7 bloating, gas, stomach and intestinal pain, nausea, impaired appetite and taste, and the overall sense of unwell ness. My husband enjoys what I cook without gluten factors in baked goods and meals. Thicken a sauce/soup? Easy: I use my homemade GF flour blend or a combo of tapioca starch and brown rice flour. Hidden gluten in staples, etc.? Reading labels meticulously and finding alternatives is a must. I make my own taco seasoning. There is so much more involved in a GF lifestyle, but it IS do-able and the benefits make it all worthwhile.
Important note: Read the labels for any supplements/vitamins that you take. I buy only those that have clearly marked on the bottle that it is produced in a facility that does not share equipment or even just produced within the same plant as items that do contain gluten. When in doubt, my daughter and I contact manufacturers directly. Our daughter gets really ill when accidentally exposed to gluten, which can happen even in restaurants that cater to GF diets.
I wish you success on our gluten-free journey😊👍🏼.

I commiserate with what you are experiencing, SusanEllen💖, and so sorry that your symptoms are getting worse.
Losing your sight must be especially devastating, along with not being able to drive anymore.
May I ask if you live on your own? Perhaps your medical insurance can provide names of organizations that can offer services that can help you. Our county Office of the Aging offers groups that address just about everything and anything that affects seniors and their health. Our town's Senior Center provides and delivers lunch meals and to homebound senior residents, at a nominal to zero fee. They also provide transportation when/as needed.
I've had double vision since 2013. For me, it rarely crops up during the course of the day. If I sit/lie down, and either turn or tilt my head even ever so slightly, the visual quickness activates. Sometimes happens when sitting upright also, but not often and definitely not while engaged in activities. Moving my eyes around and changing position (even by propping myself up with pillows) can "make it go away." Over time, I've gotten used to it. I've even found it amusing at times to see the variety of effects on the object that gets affected. For example, while watching TV faces can get four eyes, one long nose and two mouths....kind of Picasso-esque. Or the weirded out heads can juxtapose or be one just above or slightly to the side of the other, giving a Siamese effect. It does not affect me otherwise, no interference with activities. Definitely doesn't show up at all when driving. Since retiring in 2010, I rarely drive, and destinations are local. When we have a need to do shopping, errands, medical appointments, my husband drives. The neuro-ophthalmologist is baffled and suggested a prescription for glasses with a prism but I turned it down since I only need 225 strength glasses for reading --- and threading a needle! Distal vision is 2020 ever since cataract surgery back in 2020. Quite honestly, I miss having glasses and on occasion I catch myself reaching for them upon waking up (having done so for decades since about age 9).

Is it dizzying to have constant double vision? Does it contribute to balance problems?

You are included in my prayers, SusanEllen.🙏🏽

@bonez3861
Do you think you could have had a seizure? Loss of memory is common after a seizure. Ataxia like seizures can show up on an EEG as spikes. Have you had an EEG? Do you know if ataxia spikes and seizure spikes can be differentiated?
Jake

Delia - thanks for your response - it contains helpful information. Yes, I have been to three teaching hospitals, many expensive tests only to be told I have Spinal, Cerebellar Ataxia, all test results were negative except for GAD65 blood work. (No one has told me the cause of Ataxia) - Neurologist who did Lumbar Puncture on me claimed he could get no Spinal Fluid during puncture - so I had to go back and have 2nd Lumbar Puncture in the Hospitaal and no one reviewed those results with me despite my repeated requests for same. Neurologist wanted to repeat Genetic Testing, but I understand that expensive test results would not change, so why rpeat it. One of the doctors wants me to have IVIG therapy because of the high result from the GAD65 test. To me the high GAD65 result is indicative of the presence of high infection in my body. My grandson told me to have mold testing done on my home (just bought it in 2016/20117 when I got sick) and evidence of Aspergillus mold was found but my Primary Care told me that "Aspergillus is everywhere". I am in a quandary how to go forward and I am losing my ability to effectively communicate or ask for help.