Sleep

[jules51]

Hi my partner has had his SCA for approx 4 years now. Is it normal to be extrembly tired even with having a good night sleep of anything between 8-12 hours a night? After about an hour of getting up he is really tired again and wondering if this is normal. Also does anyone else have SCA 5? His neurologist after a very long time of tests says this strain is extremely rare so outcome isn't really known, is there anyone out there with this strain by any chance? Thanks. X

[wobblybee]

Hi Jules😊 It's likely someone does have SCA5, I hope they see your post🙂 Overwhelming tiredness can be common with all the Ataxias, I can relate to your post😏

In my experience, fatigue can come and go almost at will. It can be frustrating, planning outings and social events are difficult😏

Even after a good night's sleep I struggle to become alert in the morning, at times it's like the dreaded jet lag😏 Post showering and dressing, the sofa often beckons😉

Trying to fight fatigue doesn't really help. Generally speaking, the daily multitasking we all have to cope with is tiring, lots of us have regular 40winks😉xBeryl

[Litty]

Oh yes this is very normal and I have a 2hrs sleep every afternoon. If not convenient I have a power nap (my daughter insists I am much nicer after (hard to imagine). Also after a busy day I need a rest day the following.

My neuro-physio explained why I get so tired and it is because it takes so much of our energy to appear normal x

[FFNick]

Yep, it is tiring having an ataxia. I agree we spend more energy just doing things. An afternoon power nap is useful and does not stop a night's sleep occurring.

I find it useful to have a legible alarm clock at night, to warn me to go back to sleep and not get up. Black out curtains do not give any indication of daylight outside.

Have a look at your diet. More alert giving foods are out there. If on a prescription, look at side effects. But you have done that already.

HTH Not SCA5