Didn`t expect this

I`ve suffered from (Cluster headaches) dizziness and balance loss for numerous years. Tried all the medication given by consultant - but none really helped. It used to be quite frightening/annoying when it occurred.

And then just over 3 years ago I was diagnosed (after numerous blood tests) with SCA6. My local hospital - Neurology Department - have been so good to me, the Professor of Neurology and his staff really do make you feel at ease. I use a wheelchair for outdoors. And my Physiotherapy Nurse arranged for an adjustable bed (electric) to be delivered and other items to aid in my moving around the house.

Lately, it is becoming more difficult to move around the house as the old legs seem to have a mind of their own and usually go on strike - refusing to work - for a few hours.

I know they will get worse but I`m determined to fight it as long as I can, it`s just the constant aching in the legs that drives me nuts, it can last for a few hours and up to all day/night.

I take so many tablets now, when I fall over now they rattle :-)

Stair-lift and bath-lift are a great help (I miss my shower).

But, it is Christmas, so must keep happy - I`ve had to retype this many times as the old fingers keep missing keys.

Love this site :-)

7 Replies

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  • Good for you John,Always look forward (its the only way), Have a Very Merry Christmas.

    All the Best

    Andy

  • Thanks Andy,

    Same to you and yours - have a good one :-)

  • Hello John

    Sorry to hear you 're having such a tough time but it's good that you are trying to stay positive - it's so important, as Andy says.

    It goes without saying that our Helpline is here to support you with your ataxia, and it's great to hear that you like this site, but do you get support for your Cluster Headaches as I know how debilitating they can be? There is an excellent organisation called OUCH UK which provides advice, information and support for people who have primary headache conditions and they have a forum too. If you don't already know about it here is a link so you can check it out: ouchuk.org/html/

    Take care.

    Lyn

  • Don't get headaches.Can't walk inside now but I think SCA6 is very slow.Hoped I had that version but sadly not.

    Have a good Christmas.

  • Hi John!

    I was diagnosed at the RVI Newcastle last year, after suffering loss of balance

    for a very long time. My legs are either good and functional, or on the odd

    occasion sort of rigid and seem to have a mind of their own, which is very

    disconcerting! I had ankle pain which kept me awake most of the night, so

    I can relate to your leg problem. I'm listening to some christmas songs/carols

    at the moment but I still can't believe it's christmas day next Tuesday!

    Look after yourself, my best wishes for a Happy Christmas!

    xBeryl

  • Hello to you all, sorry for not getting back sooner, but in and out of hospital for this and that and that and this keeps the mind focused on pretty much nothing really - does that make sense? More or less confined to a chair all day now. If it was not for my computer I think I`d go NUTS!

    But even that takes a back seat when the aching in the legs is severe. My elder brother also suffers from SCA6 but has never suffered from any form of aching whatsoever, funny huh? All my brothers have been tested for this and out of the five of us, only two - my elder brother and I, have SCA6. The Neurology Professor says it`s not unusual.

    You would not believe how long it has taken to type this - my brain-finger co-ordination seems to have had a small wager on how many times they could make me type gobbly-gook.

    I know it`s a bit late - lot late really :-) but I hope you all had a really great xmas and are having a nice 2013.

    John-H :-)

  • Sitting looking at four walls, nowt on TV - as usual :-)

    More visits to the doctors - dizziness and blackouts combined with fuzzy vision happening on a regular occurrence now - takes me back to my Navy days and the tot :-)

    Not on the computer much these days, the fingers keep having arguments with the brain about which keys to press and concentrate too much causes blurred vision and eventual headache dizziness etc........

    You know what I`d love to do: Geordie coming up: "Aa'd love te gan fre a pint of beeah pet"

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