headaches with psp

[Orangearmy]

My wife 70year old was diagnosed finally with PSP about 3years ago but her decline started some time before that. I have a lot of support but still find it very hard to do the day to day care that she needs. Her mobility is about zero and needs help with everything. The reason I am posting is that she is complaining of bad headaches I googled this straight away but really only got some jargon and comments on hypersensitivity. We have had challenging times over the last few years and really I just want to feel that I am not alone.

[Kelmisty]

Your not alone at all xx

[LuisRodicioRodicio]

Hi Orangearmy!

Sorry to hear the PSP disease have entered in your family.

These are our informations and experiences on "headaches on PSP disease:

• Clarity produces "photophobia" and irritation of the internal eyelids. The patient used sunglasses frequently and applied artificial tear drops or saline serum upon request (At least 3 times a day). Sometimes suffers headaches and eyes pain on afternoons. We suspect that the origin is photophobia. We usually neutralize them with paracetamol.

When verbal communication becomes impossible and even gestures of affirmation or denial with the hands, tongue, etc. represent a remarkable effort on the part of the patient and the caregiver, a remarkable range of groans and moans have appeared that the patient emits with great frequency and persistence, even in dreams during the night.

Ruling out that the patient has fever or is in a painful posture, in the vast majority of cases they do not mean that the patient is suffering from some terrible pain, they simply have a light headache, pain on a leg or an arm and the solution on our case was a "liquid paracetamol" or a massage in the affected area with a suitable cream (Vicks Vaporub has been enough in our case). Other times there are gas in the stomach as a result of a flatulent meal or the patient try to express a desire (to go to the service, drink liquid, hungry, eye drops, too much light or just to get bored, want someone listen to them, talk to them, read them, etc.).

Or.... to be opposed to the main caregiver taking a respite or holiday.

Hug and luck.

Luis

[Richard33 in reply to LuisRodicioRodicio]

Luis,

Great advice as always.....

Richard 🙂

[LittleOllie]

I know people with PSP suffer with light sensitivity and I wonder if it's anything to do with that. My mom had sunglasses on most of the time to help with that. You're not alone and it's a really tough journey for the both of you. Take care

[Dadsfavorite]

You are definitely not alone on this journey...❤️ We are here.

[Diggerandsam]

Hi, I’m a psp suffere. I agree with others about light sensitivity , for instance glare from the tv (which, apart from checking my iPad, is all I do all day - watch the tv! My own is directly in front of a window and, as such, I have those curtains closed all day; drives my husband mad at first until I made him understand. The other thing that caused me headaches at first was stiffness in my neck but that’s significantly better since I started taking cobeneldopa. Hope that helps

[Richard33]

Orangearmy,

You are not alone. This forum is such a source of help and support and I check it out most days. I am afraid that PSP presents all kinds of nasty symptoms, but there will always be someone here (present or in the past) who has been through something similar. So know that you are in good company and there will always be someone to help here.

Richard 🙂