Eye issues?

[JubileeRanch]

My husband seems to be having a lot of trouble with his eyes he says they burn and are hard to keep open...anyone else with this?

[Hidden]

Hi Jubilee,

Mom had both issues... l am no expert but my guess is both are related to PSP.

Ask Dr. . . Hopefully some eye drops will help relieve some of the burning. Botox may help the other.

Good Luck... Granni B

[Bhakthan in reply to Hidden]

Soak coriander leaves in pure water and drip some into eyes for certain relief

[Hidden in reply to Bhakthan]

Thank you Bhakthan, I have never heard this one before. Not sure l can find coriander leaves in the winter time in USA. Sending hugs... Granni B

[racinlady in reply to Hidden]

Granni B - I think we can find them in the spice section of stores that carry ethnic spices. I think I will try the coriander for myself (I have dry eyes too) and my husband who has suffered with this almost from the onset of his PSP. I believe I have tried all of the things that the pharmaceutical industry offers and none of them do much except lighten your pocketbook. Warm compresses and the petroleum jelly/mineral oil ointment seem to help more than anything else. The ointment can only be used at night because it blurs your vision significantly. Also, reducing glare makes a big difference and helps with the watering.

Pat

[Hidden in reply to racinlady]

Good Mornimg Pat,

I believe the warm compresses are excellent for everyone. As far as l know Mom never tried the petroleum jelly/mineral oil. We just did not know very much about PSP when she was diagnosed many years ago.

My question: Do you mean the coriander spice as a ground up product? I am not sure that would have the same benifit as the coriander leaf soaked in pure water. My great-grandmother had excellent plant knowledge. . . Sure wish she would have written it all down for me.

Sending Hugs, Granni B

[racinlady in reply to Hidden]

The little grocery store where I shop has a large section of dried spices that are in glassine bags. I think they are mostly used in Mexican, Indian or Asian cooking. I haven't looked there yet, but will the next time I shop there. I like the idea of using old remedies when I can. My husband won't be able to tell me if it works, but since I have the same problem, I will be able to.

[stephanotis in reply to racinlady]

Be careful with your eyes. Coriander leaves are cilantro. If you plant cilantro the flowers turned into seeds and the store sells the grinded seeds looks like sands ( for cooking) so you don't want to put them into your eyes. What Bhaktan mentioned was soak the coriander leaves ( cilantro) not the coriander (seeds) . Am I right, Bhaktan ?

In the US we can find cilantro leaves at any season at the grocery stores.

The best is to stay away from sunlights. My deceased husband used to ask that all drapes /shutters/blinds were drawn in the house so at daytime our house was kind of dark but he didn't mind to turn on lights.

[Hidden in reply to stephanotis]

Thank you Stephanotis... l buy a celanto plant every spring... l did not realize it is coriander. Granni B

[stephanotis in reply to Hidden]

You're welcome Granni B.

[racinlady in reply to stephanotis]

Stephanotis - Thanks for the info. I thought that cumin and coriander were the same. Does cumin come from cilantro then? I think what Bhaktan was saying was to use the water after you've soaked the leaves in it. Kind of like a tea. I will try it for myself first because my husband won't be able to tell me if it helps or hurts. I've had dry eye for years and have tried just about everything that's on the market for it. So far the petroleum jelly/mineral oil combination used at night works the best for me. We have been keeping my husband's room dim for a while now and that seems to help him, but I have to be out driving around and just generally trying to live my life so I will definitely try it. Besides, sitting in a dim room just makes me feel depressed.

[stephanotis in reply to racinlady]

Racinlady, cumin and coriander are two different spices.

Sorry, I don't know what plant does cumin come from.

If you want to try soaking the cilantro leaves, must be organic, be careful with cilantro that has pesticides.

My suggestion is to check first with your ophtamologist.

[Hidden in reply to stephanotis]

Sounds like a good idea Stephanotis. I think l will stick with the eye drops my dr recommended. Granni B

[racinlady in reply to stephanotis]

Guess I thought they came from the same plant because you can substitute one for the other in recipes. They are both from the parsley family. Thanks for the info.

[Hidden in reply to racinlady]

Too funny Pat,

I have grown celantro in my herb garden for years and did not know it was also called coriander... l learned my 'something new for today.' Please let me know if this helps...

Sending hug... Granni B

[racinlady in reply to Hidden]

I've grown it too, but not very successfully. It's too hot most of the time where I live and it takes a lot of water. It's cheap enough here to just buy it when I need it.

Pat

[racinlady in reply to Bhakthan]

Bhakthan - Thanks for the suggestion. I intend to try it myself and for my husband.

[Dadshelper]

Dad complained of that at times. Once it was an eye infection. I'd have it looked at by doctor. In the mean time you could try a warm compress on his eyes.

Ron

[sivas]

PSP patients lose control of the eye muscles. They cannot keep their eyes open for which botox may help. They don't blink as often as they should be doing so their eyes are dried out and burn for which frequent usage of artificial tears/lubricant will help.

[Boyce3600 in reply to sivas]

Have u or did u ever run into the patient keeping eyes open for hours at a time

[JubileeRanch in reply to Boyce3600]

My husband almost NEVER blinks....I try to make him blink and he doesn’t just the thousand yard stare...when he talks to me often he is looking just past my head but not at me

[Boyce3600 in reply to JubileeRanch]

is there anything u put in his eyes or has dr given any suggestions mine does nothing about it but say put drops

[JubileeRanch in reply to Boyce3600]

I just give him drops....it seems to not be able to focus either. He has that 1000 yard stare that looks right past things he is looking for or even past a person he is tying to talk to...

[LuisRodicioRodicio]

Hi JubileeRanch!

These are our experiences:

•Dry eyes is a classic problem: 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. My wife wears sunglasses frequently applied artificial tear drops or saline serum. Sometimes suffers headaches and eyes pain on afternoons. We suspect that the origin is photophobia. We usually neutralize them with paracetamol.

•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.

During the 6.5 years in which we lived with PSP I have been collecting my own experiences and that of other members of the chat to offer this notes as a suggestion to patients and caregivers. If the document with our experiences and our solutions can be useful to some one, do not hesitate to let me know to send it by private mail through this chat.

Hug and luck.

Luis

[Trillo]

Yes my husband has this, suffers badly, but drops seems to be the only thing, and that doesn't help a lot.

[AJK2001]

My Mum complains of this, it seems that as PSP effects the muscles, the blink slows down and this in turn means the eyes don't get lubricated and the tear film across the eyeball gets disrupted and soreness/burning results. We've recently seen a cornea specialist and without the "blink" there isn't much they can do other than eye drops. Mum has Hyloforte drops at least 4 times a day but can be used upto hourly, Clinitas Eye gel twice a day and Xalin eye ointment at night. Also everyday (as recommended by cornea specialist) we use an eyebag (opticians sell them), which is warmed in the microwave and placed on the eyes for 10 minutes, giving warm moistness, then the eye lids are gently massaged to encourage movement of oil within the lids, then bathed using Blephasol solution, paying particular attention to the eye lid margin. She was also put on an antibiotic regime for a few weeks, where she took them for 3 days for 3 weeks. Not sure it made too much difference but Mum will try anything this is such a discomfort to her.

I would try & get referred to a specialist just t make sure there is nothing else going on, but not get your hopes up that they can do much to help.

[daddyt]

You can buy an over the counter medication for the eyes - Artificial Tears is a brand, I'm sure there are more. Heavy eyelids... as Mottsie said, consider Botox.

Tim x

[Hidden]

The supranuclear part of the disease name in reference to the eyes. Larry’s neuro ophthalmologist said his tearing was related to his eyes not staying shut fully at night will awake causing his corneas to dry out on the bottom part. Eye ointment and hot compresses were recommended. I think the burning feeling may be related to your husband doing the same thing. Seeing a neuro ophthalmologist would be a good idea. I had no idea they existed until I was told to take him to one.

[Boyce3600]

do u ever notice the eyes being open for extended periods of time during the day

[sivas in reply to Boyce3600]

yes

[Upword]

Hi my husband has trouble with his eyes. The best drops we have are hylo tear. They are on prescription,and last for six months once opened.

[sonikaKharb]

Hi Dear,

you should use some eye drops. Please ask from doctors. It will helps a lot.

In india we are suing "Refresh tears "eye drop but don't in your country it is available or not.

Good Luck ..