Episodic Ataxia w/ tremors & twitching

[Episodic_Ataxia]

Hey everyone.. I have suspected Episodic Ataxia type2, severe episodes of imbalance and coordination issues, vertigo and vomiting, crossed eyes, double vision, persistent nystagmus in between episodes, jerking in arms and legs, that last several hours at times but depending on severity can be shorter spells. I get slurred speech with it, but on a side not I noticed a new thing that seems to happen, recently. I get tremors at times without being in an episode, and I get twitching throughout out my body mostly when I’m relaxing or trying to sleep. Do you have this too with Episodic Ataxia? And what type of Episodic Ataxia you have? Please share your experiences..

[wobblybee]

🤔 You might find it helpful to be in contact with others in a similar age group.

Under 30 with Ataxia Support Group

You must have Ataxia yourself and be ages 16-30 to join this group. Parents/Spouses/Friends of people with Ataxia are not permitted.

Lauren Sormani

Washington, DC

Phone #: [phone]

E-mail: [e-mail]

Facebook Group: facebook.com/groups/Under30...

[claire01]

I too have EA2 and get tremors /twitches it is a very frustrating condition

[Crochetkatt]

I've had it for over 40 years. I have EA2, and when I'm having problems I have most of the symptoms you describe apart from vomiting, jerking, tremors and twitching. Mine is definitely episodic, I can go for years with only minor issues such as, imbalance, occasional short vertigo attacks and nystagmus. But the it can reappear for no apparent reason. Like in Jan 2019. I hadn't had anything for over 12 years, and had ceased all my medication. The wham, it was back. Vertigo attacks lasting 30 hours. It was horrendous. Saw my GP, who was new and knew nothing about the condition

.She put me on diamox 3x250 mg per day. My condition didn't improve much, eventually got to see a neurologist, again a new one. Both my GP and neurologist had retired. The new neurologist upped my medication to 5x250 mg a day, and advised me to take six if I needed it. This did the trick, but it took about 5 months. I've now gradually decreased to the normal 3 a day. Hopefully, I'll gradually decrease to either a 1 a day maintenance dose, or cut them out altogether, until the next attack occurs. I've recently had genetic testing done, but this was inconclusive. I've not been able to discuss this with the neurologist due to covid restrictions on hospital appointments. My advise to you is to push to see a neurologist who either specialises in genetic conditions, or to get an appointment at one of the clinics which specialises in ataxia. I know oxford and Sheffield both have one. You really need someone who has some knowledge about the condition. It's a terrible condition, no one can understand just how devastating it can be unless you've experienced it yourself. Hopefully, with the right help and medication yours will settle down. In the meantime try to stay positive, and do the things you enjoy when you are able. Good luck

[Episodic_Ataxia in reply to Crochetkatt]

Thank you and yes I do see a specialist in Ataxia. I just cannot get into the appointment until next month.