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Hi my mom was diagnosed with PSP a year ago as she had lost her balance for around 3 years and kept falling. She is 90 in May. So far (touch wood) her speech and swallow is ok, but she is very unstable to walk and dizzy all of the time even when sitting down and suffers from terrible headaches from the moment she wakes to the time she goes to bed. I don not seem to read about the terrible headaches. Does anyone else have this and have you tried any medication to help? She only takes paracetamol which does not touch it. She is getting worse very quickly the last few weeks. She does have a live in carer now. Any advice would be great.

4 Replies

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  • Meant to say he has a weird feeling down the side of her face most of the time too a bit like having a stroke and her eye is bothering her.

  • So sorry your mom is suffering from this terrible illness - mine is as well. Although my mom hasn't had headaches her neck muscles are completely stiff. Perhaps the progressive muscle tightening is causing the headaches. Something you could ask the doctor about. Mom also has trouble moving her eyes and blinking. The loss of regular blinking leads to dry eye and constant tearing which in uncomfortable.

  • Thanks Mary for your reply. Her neck is also really stiff. I feel the last 2 weeks she has got a lot worse. I am so worried as my dad was paralyzed from the neck down and had all of these horrible problems of swallow and speech and he lived for 4 years like it and it was hell to watch. i do not want to go through this again with her.

  • So sorry you are going through this.

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