My name is Jules and it appears I have ataxia:/
Mine started in 2006 with a massive episode . I woke up one day feeling rough and balance gone. Loads of tests and an MRI followed.
Subsequently I had more episodes…some lasted just a few hours others a few days, none as bad or long lasting as the first, which lasted weeks but came and went in intensity.
I saw the neuros on and off for a few years but it all seemed quite settled…just the odd small attack lasting a day or even a few hours. Often when tired, unwell or if someone startled me!
Fast forward to 10 days ago…driving to see my daughter I felt ‘odd’ Massive attack of dizziness next day, nearly passing out and feeling most unwell…thought I was having a heart attack! Ataxia followed, but as days went on the dizziness has got worse…terrible vertigo and some weird racing heart periods.
Neuro has prescribed acetazolamide and I will see him in clinic next week. They think I have Episodic Ataxia (type 2?).
Frankly at the moment I’m just scared. I have had the ataxic balance before but never the hideous dizziness and vertigo and feeling my head is going to pop. Does this happen to other people? It keeps coming and going…yesterday I felt better like the attack was finishing, then this morning I woke with horrendous dizziness that made the room spin… worse lying down.
I’m starting the meds tonight and am desperately hoping they will help.
Please share your experiences with me as I’m rather scared at the moment because I feel incredibly unwell!
I too have sporadic episodic Ataxia. There are days I am fine and I get Ataxic for reasons unknown. Stress, hunger, tiredness worsens my condition. When I force to take a few extra steps, walking gets all the more difficult. I had iodine therapy for Hyperthyroidism and I got Ataxia after one and a half years. I have Thyronorm for Hypothyroidism now. Balance has been affected, and my hips sways now and then. I do get dizzy but not frequently. My head spins to such an extent that I feel the roof will come down!
I was diagnosed or should I say classified back in 2006. I'm actually inproving since then but it's really been lot's of working on it daily. So I think it can be done!
I don't have any Gluten or refined sugar or additives. Nothing prepackaged or in a box. Just natural and organic as much as possible.
I currantly try to stay away from meds of any kind because I notice there is an after effect in my body and it isn't great.
I strech in the morning to get going. Now that I worked with Dr. Tom Clouse I'm actually able to walk my dog ever morning now (that is huge for me. I gave up walking alot before then). I play mental games everyday and consintrate on exercise and eating well. It's a full time job. I deal with some fatigue but not like I used to. I used to sleep alot throught my days but I don't nap regular any more. I will once in a great while but not 1/2 as long!
IMy Dr tracks my progress with MRI's. I was getting one every year but just graduated to every 2 years now. Last March he told me that clearly I've gotten better than last year. He said keep doing everything your doing because we don't know what your doing that is working, but clearly it is. My Dr. is at UCSF in Neurology! :0)
They say everyone is diffrent but my advise to you is start working on the depression of being newly diagnosed first. After your done with that check out www.walkingwithataxia.com and start to follow what how he can guide you.
I just got done working with him and saw huge inprovements! Contact me if you want to know any thing ok?
I am new here, and trying to learn about ataxia. If you don't mind, what do you feel like between episodes?
Hi Bella . Between episodes I’m normal! …I think.! I do have a somewhat odd startle reflex tho, if someone moves near me suddenly it doesnt just make me jump it makes my balance completely go…instant ataxia! I also have to be careful with moving objects; for example if I am hanging out washing on the line and the wind catches the line…if I am looking at it I will fall over! It upsets my balance senses!
But in between I am fully functional… work, parent and run around after 4 teenagers! Right now they are babysitting me
Hi Jules and welcome to this site. Hopefully it will provide you with a great deal of support! I don't have episodic ataxia as mine is sporadic cerebellar ataxia (non-hereditary/unknown cause-I have it 24/7). Obviously, people with your type can advise you, although I think with any form of ataxia, stress and fatigue can make it worse. I experience a lot of dizziness when tired. I'm sorry I can't be more helpful, just wanted to welcome you and tell you I'm thinking about you! ;o)