I've been diagnosed with Episodic Ataxia Type 2, I've had mod to severe symptoms for 10 years!!!! But things became unmanageable about three years ago when I had a car accident and got PTSD. My main problem is with my balance, at it's worst I can't get out of bed, maybe five minutes at a time. I can't lie down flat and haven't for 10 years, and can't make dramatic body movements without it affecting my equilibrium. I stopped working in 2008. Just wondering if anyone here as Type 2 and if you do has Diamox helped? and if so how long did it take before it worked. I've been on it for about eight days and I'm still feeling very grizzly after quite a big episode two weeks ago. I don't mean to have a pity party on my first post, but I am so sick of this right this second, the nausea, not getting out and about, how tired my husband gets working full time then having to pick up the slack at home. A feeling I know we all experience. Anyway any experiences would be very helpful to me. Thanks, Lucy
Dear Lucy, Although I don't have EA2, I was diagnosed 10 years ago with Sporadic Cerebellar Ataxia (I have mine 24/7), so I understand how frustrating and challenging this can be! There are people on this site that can relate specifically to EA, hope you'll hear from them and get some sound advice! Just wanted to welcome you to this site, as it's wonderful for support and understanding. This is a great place to vent/have a pity party, as we've all been there and done that...,ha! You are NOT alone in this journey!!! My best to you..., ;o)
Hi Lucy welcome, i have EA last dozen or so years so realy no what u are talking about,up to now the best thing i have found to help me is CHIA SEEDS. i stil get the symtoms that you talk about but a lot milder so thats a realy big help to me.you can google the seeds i started taking them for another health problem & found that my EA symptoms became a lot less.i have been taking them for around two years now,good luck frank'o
Hi Lucy: I have EA 2 and have been on Diamox since May 2013. At first it was like a miracle. Took about 2 weeks to make a difference. It took my episodes from 2 to 3 a day to 2 to 3 a week. However, I am starting to get them daily again and have an appointment to see my doctor the end of October. The Diamox has helped with the intensity of the episodes and have taken the slurred speech away. I am on 250 mg twice a day. For fatigue I make sure I get a B complex vitamin and take an extra B12 vitamin. It seems to help. I know what you mean and how you feel. Some days are so tough to get going and get out of bed. But I definitely need more sleep now then I used to. When I feel tired I take a nap. I used to work out 4 days of a week now I'm lucky to do 1 day. Exercise does help me and I have started putting post- it notes up reminding me that it's only 30 minutes a day go for it. Some days it works and some, well, you know. Glad to find another EA 2 buddy. Have had this bad for 3 years and just got it diagnosed this May also. It sure took a while to find the right doctor. Where are you located? I'm in the Chicago area.
hi,lucy!i have been symptomatic with ea2 for 5 years with a diagnosis for the last 2.i have been on 500 mg Diamox twice daily about a year and a half.being that it is a diuretic,it takes some time to get used to.it can be draining and fatiguing as it was for me for quite some time.(maybe 3-4months).sugar free sports drinks helped me feel better.i think that I lost a lot of fluid initially,but that did not continue.my ataxia symptoms got better and better starting in the first month.if I miss a dose though,i stagger more.i have breakthrough periods where my ataxia is worse especially if I am tired,sick,or stressed.i consider the Diamox to be a godsend.hope it is for you as well.
Dear Lucy, Although I don't have EA2, I was diagnosed 10 years ago with Sporadic Cerebellar Ataxia (I have mine 24/7), so I understand how frustrating and challenging this can be! There are people on this site that can relate specifically to EA, hope you'll hear from them and get some sound advice! Just wanted to welcome you to this site, as it's wonderful for support and understanding. This is a great place to vent/have a pity party, as we've all been there and done that...,ha! You are NOT alone in this journey!!! My best to you..., ;o)
That is so interesting about the Chia Seeds, I quickly googled them and its says "Chia is the highest plant based source of Omega 3". My intuition has told me up good fats and over the last few days have been taking Fish Oil, Vit D, eating walnuts and enjoy a veggie juice of Spinach, Celery, Cumumber and Lemon (it's actually refreshing). So Thanks Franko, that's really valid information. :) franko said:
Hi Lucy welcome, i have EA last dozen or so years so realy no what u are talking about,up to now the best thing i have found to help me is CHIA SEEDS. i stil get the symtoms that you talk about but a lot milder so thats a realy big help to me.you can google the seeds i started taking them for another health problem & found that my EA symptoms became a lot less.i have been taking them for around two years now,good luck frank'o
Yes glad to connect with you too. I haven't hit the two weeks on it yet, I'm a medication lightweight so I've started on 125mg for seven days, then for the last three 3/4 of the 250mg, then I'll get the whole tablet!!! This med wakes me up, so insomnia has been a problem, rather than being sleepy. Diamox does have a reputation for working then stopping. Stress, Heat and Exercise are three major antagonists for me, and I haven't slept lying down for over 10 years, so really I'm not longer episodic just varying degrees of functioning with some days being better than others. How does your EA affect you to most? Mine is balance/equilibrium and I can follow this back to milder symptoms when I was a child. I'm in Australia, so not physically close. I had given up on neuro's for a while after my car accident, but I knew I couldn't leave it. I'm usually diagnosed with BPPV or Migraine Associated Vertigo and would always question why it was around 24/7, it was like they couldn't hear that bit. Just so happens a neuro local to me picked it, I could see in his eyes he had connected the dots, it was a bitter/sweet diagnosis, but I'm glad I have one now so I can look at appropriate treatment not just trying migraine meds that don't work. Lucy :)
aturtle2 said:
Hi Lucy: I have EA 2 and have been on Diamox since May 2013. At first it was like a miracle. Took about 2 weeks to make a difference. It took my episodes from 2 to 3 a day to 2 to 3 a week. However, I am starting to get them daily again and have an appointment to see my doctor the end of October. The Diamox has helped with the intensity of the episodes and have taken the slurred speech away. I am on 250 mg twice a day. For fatigue I make sure I get a B complex vitamin and take an extra B12 vitamin. It seems to help. I know what you mean and how you feel. Some days are so tough to get going and get out of bed. But I definitely need more sleep now then I used to. When I feel tired I take a nap. I used to work out 4 days of a week now I'm lucky to do 1 day. Exercise does help me and I have started putting post- it notes up reminding me that it's only 30 minutes a day go for it. Some days it works and some, well, you know. Glad to find another EA 2 buddy. Have had this bad for 3 years and just got it diagnosed this May also. It sure took a while to find the right doctor. Where are you located? I'm in the Chicago area.
lucy,you sound so much like me.my complete diagnosis is familial hemiplegic migraine syndrome with overlapping episodic ataxia type 2.my ataxia is also a 24/7 deal with good days and bad days,i also take 100 mg Topamax twice daily.i rarely get headaches but for some reason this whole "migraine"thing causes the muscle weakness and ataxia.the Topamax helps with that.it was another tough med to get used to but it has been well worth it.you have to be nauseated for some time but you WILL get past it.
Hi Annette, yes we sound very similar and I've def heard the word hemiplegic migraine too in reference to me! Topamax affects my mood so i've had to leave that one! Luckily I don't get the massive pain with migraine very often, but certainly get the weakness down the side of my body. I suspect that I will need to get to a higher dose of Diamox but Dr's always put me on lower doses first. I hope Diamox continues to hold for you and it's good that you have been having great success for quite a few years. I'm very aware of fluid loss, but it's not happening yet due to my lower does. I've started 'juicing' again and having banana smoothies, after reading some other posts I'm going to add Chia seeds into my diet. Yes how much does stress and heat affect!!!! We are coming into what looks like a hot summer here and I am not pleased! :)
Annette Feeser said:
hi,lucy!i have been symptomatic with ea2 for 5 years with a diagnosis for the last 2.i have been on 500 mg Diamox twice daily about a year and a half.being that it is a diuretic,it takes some time to get used to.it can be draining and fatiguing as it was for me for quite some time.(maybe 3-4months).sugar free sports drinks helped me feel better.i think that I lost a lot of fluid initially,but that did not continue.my ataxia symptoms got better and better starting in the first month.if I miss a dose though,i stagger more.i have breakthrough periods where my ataxia is worse especially if I am tired,sick,or stressed.i consider the Diamox to be a godsend.hope it is for you as well.
Hi Lucy....I have to sleep using two thick pillows or I can have vertigo problems with even moving my head. Raise my head sort of thing. Beds that can raise your upper body when resting, reading, sleeping could be a solution. There are cushions that can raise a patient more upright available from disability websites. I have had one, slides under mattress and raises mattress under upper body. Very firm foam. Different contours in selection range. Hope this info helps. Storm.
Yes that happens to me too. I use about eight pillow and put at least one or two on either side of me to support my arms, my husband jokes that I have created a forte!!! I think I will investigate the wedge foam. Thanks :)
Storm said:
Hi Lucy....I have to sleep using two thick pillows or I can have vertigo problems with even moving my head. Raise my head sort of thing. Beds that can raise your upper body when resting, reading, sleeping could be a solution. There are cushions that can raise a patient more upright available from disability websites. I have had one, slides under mattress and raises mattress under upper body. Very firm foam. Different contours in selection range. Hope this info helps. Storm.
I too was diagnosed with BPPV at first and migraines. Although I do have migraines I knew what was happening was not typical of my migraines. Felt they were just using that as an excuse because the docs really didn't know what was happening. Also exercise, heat and stress and alcohol are major triggers. Do try to exercise anyway and found I can tolerate some red wine. ;-) No hard liquor. Crowds, grocery, department stores etc are major triggers too. Balance/equilibrium is my major problem with EA2. Never know when an episode will come on.
For me the Diamox makes me very fatigued. No insomnia.
So glad you found a doctor that was able to figure it out finally. It made me feel like I won the lottery when I found my doctor who knew what was happening and has other patients like me.
Happy to meet you and love your country. Would like to visit again some day.
Lucy said:
Yes glad to connect with you too. I haven't hit the two weeks on it yet, I'm a medication lightweight so I've started on 125mg for seven days, then for the last three 3/4 of the 250mg, then I'll get the whole tablet!!! This med wakes me up, so insomnia has been a problem, rather than being sleepy. Diamox does have a reputation for working then stopping. Stress, Heat and Exercise are three major antagonists for me, and I haven't slept lying down for over 10 years, so really I'm not longer episodic just varying degrees of functioning with some days being better than others. How does your EA affect you to most? Mine is balance/equilibrium and I can follow this back to milder symptoms when I was a child. I'm in Australia, so not physically close. I had given up on neuro's for a while after my car accident, but I knew I couldn't leave it. I'm usually diagnosed with BPPV or Migraine Associated Vertigo and would always question why it was around 24/7, it was like they couldn't hear that bit. Just so happens a neuro local to me picked it, I could see in his eyes he had connected the dots, it was a bitter/sweet diagnosis, but I'm glad I have one now so I can look at appropriate treatment not just trying migraine meds that don't work. Lucy :)
aturtle2 said:
Hi Lucy: I have EA 2 and have been on Diamox since May 2013. At first it was like a miracle. Took about 2 weeks to make a difference. It took my episodes from 2 to 3 a day to 2 to 3 a week. However, I am starting to get them daily again and have an appointment to see my doctor the end of October. The Diamox has helped with the intensity of the episodes and have taken the slurred speech away. I am on 250 mg twice a day. For fatigue I make sure I get a B complex vitamin and take an extra B12 vitamin. It seems to help. I know what you mean and how you feel. Some days are so tough to get going and get out of bed. But I definitely need more sleep now then I used to. When I feel tired I take a nap. I used to work out 4 days of a week now I'm lucky to do 1 day. Exercise does help me and I have started putting post- it notes up reminding me that it's only 30 minutes a day go for it. Some days it works and some, well, you know. Glad to find another EA 2 buddy. Have had this bad for 3 years and just got it diagnosed this May also. It sure took a while to find the right doctor. Where are you located? I'm in the Chicago area.
I had to comment on your vertigo problem. While I have vertigo with ataxia, I also have a different vertigo that sounds like what you may be experiencing. Especially when you mentioned just moving your head was a problem. The good news is; IF it's what I'm thinking, there is a simple solution and it's a common problem. Read this:
Since this can reoccur my doctor gave me permission (and encouragement) to do this at home when it does reoccur. It's been tremendously helpful for me! Let me know if this works for you!
Ah yes the 'ol BPPV, I went through a stage where I was doing the 'Epley' every night, I could give the Brandt-Daroff a go and see if that helps. My Dr put me on cinnarizine when I was doing these exercises so I wouldn't throw up!!!