Yes, I don't eat gluten, refined sugar anymore either, four months in, it seems to be making some difference.
rose said:
Dear Mom2KLJ, Although I do have ataxia, I don't have EA2. My ataxia symptoms are 24/7 since diagnosis eleven years ago. I just want to welcome you to this site (also, you did a fine job posting your blog...,ha!). There are wonderful people on this site for support and understanding! My two children are grown now, but I still worry about them (once a mom, always a mom). You sound like a very loving, caring mom, seeking answers for your daughter. People with EA2 can answer your questions and give you helpful advice. I just want to add that although I don't have Gluten Ataxia or Celiac Disease, I do eat gluten, dairy and sugar free, as I just feel better physically and am more clear-headed. I'm not suggesting this for your daughter, just something to think about. Hugs to you and your daughter..., ;o)
you are the first person I noticed that has stated it started out with a bad headache. I too had a bad headache. I'm 40 years older than your daughter, but my headaches started coming and going when I was in my late 20's early 30's. The type of headache I get is pressure on top of my head. Almost like a sinus headache. I can't really consider it a migraine since it doesn't cause me to be light or sound sensitive and its not on one side or the other. I too have nystagmus and was diagnosed with episodic ataxia July 28 2013. It would come and go for years but in the last 3 years my symptoms became worse. I am now on medication that keeps my balance somewhat normal and does take care of the nystagmus. My neurologist stated that I have a disorder in the cerebellum and hence the diagnosis. Now I did fall about 8' on the back of my head. I'm sure that didn't help things and maybe caused progression to where it is now. I have trouble with swallowing, my balance is off, my hands sometimes don't do what I want them to. I am also a runner and they found that I have irregular heart beats. They call it a wandering pace maker. I'm not sure if it's from the ataxia or because I run. I was unable to workout for about a year until my medication kicked in and I no longer had the pressure headache. After doing my own google search I can say the headache was like an excursion headache. but it was caused by the medical problems I was having. I would have to say the onset was gradual and then progressed from the years 2011-2013. My doctors all say I was born with this and it just progressed over the last couple years to a noticeable condition.
Daisy, that sounds similar to way she describes her headache. In the front and also to the left (which is usually, but not always, the side she falls towards when losing her balance). How did they come to your diagnosis? Do you have family history of EA2?
Hi mom2KLJ, I'm really sorry to hear about your daughter's condition. My daughter displayed problems from 11 months and she's now 17 and they still can't diagnose which type of SCA she has as the tests haven't been developed for most types. They thought she had an episodic type 2 but she is affected with her balance and falling all the time and it does worsen at times but never gets better. She has atrophy or shrinkage of her cerebellum and spinal chord. She does have nystagmus now but didn't until about a year ago. She is still walking despite originally being told that she wouldn't be walking from about the age of 12. It is a very worrying condition and all types have their differences. I have given my daughter Co-Enzyme Q10 since she was about 6 years old as recommended by her paediatric neurologist and I really believe that it has slowed down the progression of her condition and so I highly recommend it. There have been lots of research done on it. I suggest you research it for your daughter. Ella also takes Gabapentin which is to help with neuropathic pain to keep her pain to a minimum. She is amazing, she can still walk for about 20 minutes even if she wobbles all over the place and falls. I hope your daughter defies the doctors in a similar way. If you ever need to talk, I have been through much of what you are going through with your daughter and i'm happy to talk anytime. Take care
Hi! My son is three and has been diagnosed with ea2. Did your daughter get a diagnosis? how did the attacks start. I donāt think my son has had any. He has balance issues so far but thatās about it. He has episodes where he has a leg limp without a reason.
Hi me again. The very best advice is to be seen by a Neurologist who actually specialises in Ataxia. Log onto www.ataxia.org and type Neurologists in the SEARCH BOX.
I have EA/ Hemiplegic Migraine. Onset at 30 (last yr). The only way to be sure that it is EA2 is through genetic test. Iām still waiting for result as part of a long term research genome project. I think itās important to be prepared that a prompt diagnosis may be unlikely. If all the scans/ serological tests are clear at least thereās no immediate danger for brain damage. What remains, at least for me, is to keep a close diary/mental notes of symptoms and what help those symptoms. Symptoms can vary from day to day for me. I started off with pure Ataxi to my right side, dysarthria, head pressure, visual vertigo, dizziness etc. For the past two months Iāve developed paresis to right side as well (this is distinct from Ataxia). Each symptom can be alleviated by different strategies. Each episode can be sudden or gradual, with apparent triggers or without any trigger. I gradually learn about my body through experiments and paying close attention to my motor controls. Iāve never had tremors. I donāt have nystagmus either but I subjectively feeli have trouble fixating. Sensory overload is a major trigger for me so I prefer to walk quiet street. Your daughter needs to learn to listen to her body. I know when my head is stable and when itās not. Itās a feeling I cannot make people understand. Communication can be difficult when having an episode, not in terms of speech, but social communication takes a lot of attention demand and emotional demand. My advice is to give her a quiet time when sheās unwell, and try not to panic. These come from my own experience. Also as others have mentioned, I went gluten free and felt better. But then I overdid it with GF meals so I feel my condition got worse. Now I follow low carb diet and I feel my brain is more stable and lasts longer. But I also learn that others did not see an effect. Each to their own I guess. At the moment I folllw dietary treatment with daily Acetezolamide.
Hi Beryl_Park thanks so much!
Yes he has to be seen by Neurologist we had an appointment for today but flight got cancelled and got for next Wednesday. I donāt know if his ataxia will be worst since he has balance issues since heās little. As for the genetecist, he reviewed my sons clinical history and said Iād doesnāt entirely match with ea2 so we will know sooner.
me again. The very best advice is to be seen by a Neurologist who actually specialises in Ataxia. Log onto 
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