PSP Symptoms

[NathalieA]

Hello dear bloggers, my mum who has been diagnosed with PSP or CBC , 2 different diagnosis by different doctors, has been complaining for the past 3 years from a constant sleepy state during the day although unable to sleep. Is this a symptom of PSP or CBC or it is the results of the medications she is taking? 

[D0ttieL0ttie]

I would proffer that it is the meds. Drowsiness should be mentioned in the 

contra-indications pamphlet, also speak to you GP about this. 

Take Care both xxx

[NathalieA in reply to D0ttieL0ttie]

She would feel sleepy with an incapacity to sleep may be because of a mix of  medications.

I was just checking if psp has such symptoms of feeling sleepy But at the same time unable to sleep.

[formercarer]

Hi, My mum was also very sleepy at the beginning of her illness,  she would fall asleep while you were talking to her at the meal table! Once I became her full time carer this improved. I was never sure whether this was because I managed her day better, or whether the flu jabs she had been having (until my involvement) may have caused narcolepsy. Nourish her well, and try to get some structure, sunshine and fun into her days, that will hopefully help her to sleep soundly at night. Seize the day!

[NathalieA in reply to formercarer]

Thanks for your suggestions although not very enthusiastic to go out most of the time because of her sleepiness state and me being at work from Monday to Friday. Let us hope and pray that this situation won't last! 

[steph02]

hello nathalie,  They thought  I had CBD before  the doctor noticed  slight downward  gaze hesitation i too tend   to fall asleep sometimes in  the evening  when watching television   But I am not  am any medication I think  that is a general psp  thing I  do not  know   what medication that she  is taking,  and do they work?  nothing seemed  to  work on me so I don't  take anything,

[NathalieA in reply to steph02]

My mum is taking Sinemet which helped to slow the progression of her  Psp as diagnosed by most of the doctors.

[hellebore]

Hi NathalieA. My husband is diagnosed with CBD, finally after many others. He too would just nod off. It is almost like narcolepsy but he didn't complain of being sleepy and was unaware. As things have progressed (5yrs) he took longer naps but they came in batches. Some days he wouldn't sleep and others he was knocked out. I realised that it was related to his physical and mental exertion. In hospital at weekends he is fine, weekdays with physio he was tired. His brain just needs more energy to function. 

Sinemet only helped with the tremor and possibly personality. Nothing else makes any difference. Don't rule out depression, it can cause the symptoms you describe.

[Kevin_1]

As with all chronic conditions there is a tendency for Dr's to keep adding meds. in order to control symptoms.

Regular medication reviews are essential.

We regularly cut doses or even drop medications for trial periods.

Best done with clinical guidance though. (Some meds. should not be suddenly stopped).

Tip: When starting a new medication make notes of before and after symptoms and side effects.  Ask the doctor when the medication should have reached its full effect. This can be three weeks or longer for some meds. Also see if initial side effects are diminishing over this period.  They often do.  If the side effects are unacceptable or the gains are small go back to the prescribing Doctor and discuss possible alternatives.

Remember no-one sees it clearer than the patient and their carer.