Am a carer for my mum who has been diagnosed with cbd about 2 years ago but had symptoms for at least 3 years before. She is non-verbal now mostly so can't ask her to explain more (speech aids also not effective) but is exceptionally light sensitive and clearly having intense pain in her head/face specifically above and around the eye. She has had pregablin on the past as nerve pain was suspected but it made her very sickly so she refused. She has said she would be willing to try again now as the pain is so bad but wanted to know if thus symptom is 'normal' and any other thoughts on it? Xxx
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elvira4u
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My CBD hubby had extreme eye-light sensitivity, although not pain - just discomfort (although who knows if he couldn't have made this known to me, whether it would have become pain?) Are you in a country with strong light? Personally I think it is a symptom of CBD and I've seen others on this site mention it.
We know there's no cure for CBD, so symptom management is almost everything (other than love Pain control and anxiety control are important.
Thank you raincitygirl and dad's helper - just having some similar experiences really helps!! I am giving pain relief and doesn't seem to be touching this symptom - feel horrible but least it helps to know there's not much I can specifically do xxx
Dad, CBD, was light sensitive to a degree. Every once in a while he'd experience pain in the head/eye area, he'd describe it was the worst headache he ever had. The episode would last a few seconds to minutes and afterwards he'd be extremely tired and nap. I'd give him over the counter pain medicine but usually it had passed before the medicine could help.
•Dry eyes is a classic problem on PSP: drops of artificial tears to the eyes or physiological serum upon request (more often as the disease progresses). If you have problems applying the drops "Optrex spray" is an alternative. Also warm moist compresses help. Wash your hands beforehand and clean the eyelids with not irritating baby shampoo. and after use a gauze sterilized by each eye, moistened in physiological serum.
•It can be also an allergic problem. Consulting an ophthalmologist who has experience in PSP is recommended.
•Clarity produces "photophobia" and irritation of the internal eyelids. She wears sunglasses frequently applied artificial tear drops or saline serum .
•In the morning the eyelids may appear "stuck". To avoid it put eye ointment in at night to help lubricant the eyes. It is also possible that the eye may not stay closed all night and it dries the corneas. The ointment is 97% petroleum jelly and 3% mineral oil.
My wife, sick of PSP-RS suffers headaches and eyes pain some afternoons. We suspect that the origin is photophobia. We usually neutralize them with paracetamol.
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Pain control and anxiety control are important.
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