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Hi Ive had Ataxia for 38 years now I'm on no medication but find it increasly difficult to relax or sleep. I find I am also on the go. Does anybody else have this problem?

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Permalink Reply by Carol Gow on February 8, 2010 at 10:08am: Hello Sarah
Jeanette started a discussion headed 'so tired'. It could be that some of the answers there will help.
Regards and take care
Carol; ▶ Reply to This

Permalink Reply by Sarah Lacey on February 9, 2010 at 2:05am: Thanks carol I have had a look at the discussions. I dont suffer from tireness just lack of being able to relax I practice Tai Chi, Yoga and have Sleep CD for night time . I was wondering whether it was because I dont take medication and manage the ataxia myself. thanks for the reply.

Carol Gow said:
Hello Sarah
Jeanette started a discussion headed 'so tired'. It could be that some of the answers there will help.
Regards and take care
Carol; ▶ Reply to This

Permalink Reply by Carol Gow on February 9, 2010 at 2:53am: Hello Sarah
I don't take any medicattion during the day, I do however, pace myself. I have long since realized I can't do everything like I used to. That said I can fill a day. At night I take 2 x 10mg of Amytriptyline for pain and sleep (I was like you, not sleeping). They work and I sleep like a log. The dozage is very low. The specialist at the hospital prescribed them for me. Now I get them on a repeat prescription through my GP.
Regards
Carol; ▶ Reply to This

Permalink Reply by Sarah Lacey on February 9, 2010 at 8:17am: Thanks Carol I will go to my GP yet again armed with this information. I have tried before but seem to get nothing for my Ataxia from doctors or hospital.

Carol Gow said:
Hello Sarah
I don't take any medicattion during the day, I do however, pace myself. I have long since realized I can't do everything like I used to. That said I can fill a day. At night I take 2 x 10mg of Amytriptyline for pain and sleep (I was like you, not sleeping). They work and I sleep like a log. The dozage is very low. The specialist at the hospital prescribed them for me. Now I get them on a repeat prescription through my GP.
Regards
Carol; ▶ Reply to This

Permalink Reply by Carol Gow on February 9, 2010 at 3:23pm: Hello Sarah
The medical profession are a strange lot!! Don't wait to be asked, tell your GP that you want something to help you sleep and don't be put off. It seems we have to take control.
My Specialist is lovely and will tell you everything. His downside is you have to ask him, its like drawing teeth, once you have asked, there is no stopping him.
I hope you get on alright.
Regards
Carol

Sarah Lacey said:
Thanks Carol I will go to my GP yet again armed with this information. I have tried before but seem to get nothing for my Ataxia from doctors or hospital.

Carol Gow said:
Hello Sarah
I don't take any medicattion during the day, I do however, pace myself. I have long since realized I can't do everything like I used to. That said I can fill a day. At night I take 2 x 10mg of Amytriptyline for pain and sleep (I was like you, not sleeping). They work and I sleep like a log. The dozage is very low. The specialist at the hospital prescribed them for me. Now I get them on a repeat prescription through my GP.
Regards
Carol; ▶ Reply to This

Permalink Reply by Kati on February 10, 2010 at 8:16am: what are listed side effects for amytriptyline? I thought they were just for pins and needles? I was offered it before when I used to get heavy pins and needles in legs alot.

It's confusing as the drugs they use often have other uses for other symptoms too. I heard of someone been giving what I thought were anti-epileptic drugs for muscle spasms too in past.

I know a young lady with severe athetoid cp who had an operation to have a baclofen pump put in her spine, it doesn't seem to have done much she still has severe difficulty controlling her arms to do anything and her speech is still unintelligible. She said it had reduced pain and stiffness a bit but was disappointed after going through the surgery that it hadn't done as much for as she had hoped..... just makes me wonder if its worth putting ourselves through all these trials with testing drugs when we got no idea if they are creating new problems inside us?; ▶ Reply to This

Permalink Reply by Sarah Lacey on February 10, 2010 at 9:43am: Thanks Katie I work in the medical field (mental health) so I wont be fooled. I will though go to my gps and TRY to discuss my problems with him, seems that im always going to slip through the net. Last time I saw a nurerolists back in 2003 I got told I have dealt with Ataxia for over 30 years and just just keep 'living life' pretty dificult if you cant relax even something to go hand in hand with my relaxation would benefit me. I have asked my GP before but he doesnt want me to become dependant on anything. Time to strat thinking outside the box I think.

Kati said:
what are listed side effects for amytriptyline? I thought they were just for pins and needles? I was offered it before when I used to get heavy pins and needles in legs alot.

It's confusing as the drugs they use often have other uses for other symptoms too. I heard of someone been giving what I thought were anti-epileptic drugs for muscle spasms too in past.

I know a young lady with severe athetoid cp who had an operation to have a baclofen pump put in her spine, it doesn't seem to have done much she still has severe difficulty controlling her arms to do anything and her speech is still unintelligible. She said it had reduced pain and stiffness a bit but was disappointed after going through the surgery that it hadn't done as much for as she had hoped..... just makes me wonder if its worth putting ourselves through all these trials with testing drugs when we got no idea if they are creating new problems inside us?; ▶ Reply to This

Permalink Reply by Kati on February 10, 2010 at 1:02pm: I use an heated underblanket through coldest months i find the heat helps keeps my back and legs muscles more relaxed.I'm not as stiff when I wake up unless its really freezing so I just put blanket on again for a while before i get up, hot shower helps too and do stretching exercises under shower if I'm too stiff to manage them before.

I been following something called vestibular rehabilitation which involves doing 10 mins in morning and 10 mins in evening of exercises centered around balance and co-ordination.; ▶ Reply to This

Permalink Reply by Sarah Lacey on February 10, 2010 at 1:33pm: Sounds great Kati, I need something to stop me moving as I cant relax I have to be doing something and im getting fed up with the house work maybe I need a straigth jacket so I cant run around as much as I am. I usually have 5 hours sleep before I need to do something...........it would just be nice to be chilledánd relaxed.

Kati said:
I use an heated underblanket through coldest months i find the heat helps keeps my back and legs muscles more relaxed.I'm not as stiff when I wake up unless its really freezing so I just put blanket on again for a while before i get up, hot shower helps too and do stretching exercises under shower if I'm too stiff to manage them before.

I been following something called vestibular rehabilitation which involves doing 10 mins in morning and 10 mins in evening of exercises centered around balance and co-ordination.; ▶ Reply to This

Permalink Reply by Kati on February 11, 2010 at 3:13am: have they ruled out an over active thyroid?; ▶ Reply to This

Permalink Reply by Sarah Lacey on February 11, 2010 at 9:40am: Yes I'm perfectly healthy just got too much energy even when I do taI chi I dont relax.

Kati said:
have they ruled out an over active thyroid?; ▶ Reply to This