Another symptom

hi all,

I have a genetic ca from an unknown, to

date, recessive gene. Was diagnosed in 2010 after a few years of balance and walking problems

just wondered if anyone else has this symptom and if they can explain it to me. My next neurologist appt is quite some time away.

So the latest symptom is a kind of head pain. I'm not talking headaches or migraines here. I feel like a have a large or sometimes a few large circles/oval areas on my head. Kind of on the exterior of my head not inside. These areas give me pain. They are not painful to touch - not like a wound. In fact I often gently massage the areas which temporary relieves the pain.

I only used to have this happen when I was v tired and used it as one of my slow down warning signs. But now it is happening more frequently, almost every day.

I do hope someone can shed some light on this for me if only to understand why.

Another one of those ataxia things that makes me think I'm going crazy.

thanks folks

Alison xx

8 Replies

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  • Dear Alison

    From what you are saying, I can see the sort of problem you have had and I would agree that the unexplained pain or sensation is something that I have had to be familiar with. I have found the booklet produced by Ataxia UK, very good at explaining what Ataxia is and how it may affect you. I would suggest you contact the Ataxia helpline - 0845 644 0606 or helpline@ataxia.org.uk.

    Patricia x

  • thanks for replying Patricia. I do kinda understand what's happening with ataxia but I don't really understand how it's making this particular symptom.

    However I don't have the explanation booklet, so I'll contact ataxia UK for a copy.

    thanks v. Much

    Alison xx

  • booklet is in the post to me now. Thanks xx

  • Dear Alison, you are not going crazy 😊 We all know how difficult it is to explain 'our version' of a specific symptom, hang on in there😉

    ataxia.org have a number of very useful Fact Sheets, including Medications for Ataxia Symptoms. Have a look, your GP might find it helpful in treating you 🤔 xBeryl

  • thanks beryl xx

  • Hi, I had similar symptoms and I took 2-4 paracetamol until my next ataxia appointment. Then I was given some new medication and it worked. So no you are not going crazy. But I suggest see your gp for paracetamol and your ataxia consultant will know what to give you. I guess we all have to live with new symptoms coming all the time. Good luck

  • thanks for replying.

    I can't take paracetamol as I developed an allergy a few years ago. At the moment I don't take anything for this symptom. But will def mention it at my next Drs appt - which is actually Fri.

    take care

    Alison x

  • Good morning Alison

    I have similar symptoms, sometimes feels like my head is going to detach from my body.

    Yr not going crazy, this disease is so complicated and symptoms vary hugely.

    Take care

    Lis x

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