My names Deb and I have just been given a diagnosis of EA2 and I'm not sure what to expect. I haven't suffered from migraines but all the other symptoms are there. Before this diagnosis they said I have Periodic Paralysis which has practically the same symptoms, treatment and triggers.
Can anyone tell me what to expect in the future, I'm on Diamox and it seems to be working really well. I feel almost normal in between the attacks which now seem to be a lot shorter in duration. Will this continue or will it improve ?
Dear Deb, A HUGE welcome to this sight! You've come to the right place for support and understanding! I have Sporadic Cerebellar Ataxia (24/7) not EA2, although there are plenty of people on this site with EA2. Hopefully, they will share some advice and experiences. All I can say is ataxia is extremely frustrating and challenging, but don't give up or give in! Focus on what you can still do, rather then what you can't. Keep a positive attitude, and exercise for strength and balance, and eat as healthy as possible! ;o)
I was just diagnosed with EA2 in May. I also am on Diamox which worked great the first month helped with the frequency of episodes and intensity of them. I am now getting them frequent again but the intensity of them is better. Diamox has helped to eliminate my slurred speech which was a stressor for me. Happy about that. Asked my doctor if this will get worse or stay about the same. He said that patients with EA2 generally do not get worse. I am just trying to cope with the not knowing when an episode will come on and what seems to trigger them besides stress. Did just buy walking sticks as they help me walking more upright than using a cane when I have an episode. I am gluten free for other reasons but have read on this forum about other going gluten free and feeling better for it. I do take fish oil and coconut oil to which is suppose to help with brain function. Learned on this site that many find CoQ10 helpful. As I have always taken that anyway I can't tell if it helps or not.
You found the best place to ask questions and when you need to, vent your frustrations about this condition. I personally believe that EA2 is easier to live with than a lot of other type of ataxias.
What were your first symptoms at age 10? I'm now 61 and was diagnosed this last May. Took 3 years for the diagnosis. I truly believe that I had symptoms much earlier in life just didn't pay attention to them. Labeled myself as a klutz, clumsy, etc. But when the slurred speech, blurred vision, dizziness and inability to work normal was becoming more the norm I got scared and seriously started looking for an answer. Never thought it would be something like EA2. I sure am learning a lot about it now. Sorry you have it too but am happy to find someone to talk to about it. Do you get headaches too?
Firefox said:
hi debra,i have EA2 also.i had my first symptom at 10years,but wasn't diagnosed until about 30.im now 52.when the neurologist first diagnosed me,he said I had familial periodic ataxia.but my new neuro now tells me it is called EA2...which I suppose is just the new name it is now called..as for periodic paralysis,i think its just the same,but different name.....im also on Diamox,and have been since I was diagnosed...it works good,most of the time...but I do have lapses also,when its not so good..i do find a good vitamin B supplement is good...as Vitamin B is often called the brain vitamin...I agree with aturtle2 that having EA2 is easier to live with than other types of ataxia...the only thing I don't like with EA2,is that its more difficult to convince people that im disabled...its only when I have an attack that I look drunk.otherwise between attacks im normal...something ive recently found is that the cold weather seems to trigger an attack for me,it makes my speech really slurred first thing in the morning..otherwise the main trigger is stress.also chocolate,fever,tiredness,and many other triggers....