I'm Desperate

[iwubit]

Hello. I am a new subscriber. A friend is typing this because I have to keep my eyes closed. I have such pain. My eyes hurt deep and it is unbearable. I don't know how long I can hold on. I've had multiple tests and all come back fine. Schogrens, Thyroid, T3, T4, rheumatoid arthritis, Lupus, all blood tests are fine. I have tried Neuronton for the pain but the pressure in my head was unbearable. I can't work, I can't read or watch t.v. or do anything that needs eyes to be opened. I was a contact wearer for 32 years. No lasix. I did have a rash by my eye just before this came on for which I was prescribed cortisone cream and it went away. I can't live like this. This isn't living. The doctor gave me Xanax for anxiety and it helps a little. I can't sleep. Ambien helps me to sleep restessly with fitful dreams for about five hours. I am exhausted. I am cold. I am 50 years old and in menopause and feel this is hormonal. I read some of Latkany's book but had to quit because of the pain. I have some over the glasses ski goggles that I wear that helps some when I have to go out but nothing touches the pain. I live in a dry climate but have for almost 30 years. Please help. I feel so sorry for anyone that is experiencing this. Especially the younger people. I can't imagine a life like this. I forgot to mention that I do get relief with eating and swallowing-it is amazing the amount of relief I get with swallowing. Gum helps some but not like eating but does help with nerves. Does anyone know what hormones are released when swallowing or digesting food that could be the trigger in all of this? Thank you so much for your help, everyone who responded. I have an appointment with the neurologist on Friday and will ask about the shingles and trigeminal neuropathy. I hope Dr. Latkany takes special notice, reads this and replies. Thank you...

[mary kenny badami]

Hello, iwubit --

I am so, so sorry to hear about the severity of your situation. (Also very impressed that you have a friend serving as your eyes and fingers just now).

I'm not a doctor, just another poster, and this is NOT medical advice -- but three ideas came to mind when I read your post.

(a) Have your docs considered shingles as a precipitating cause of your problem?
One of the classic symptoms of shingles is a localized body rash (yes, including on the face), and it is unfortunately sometimes followed by weeks of excruciating pain.

(b) Have your docs explored a diagnosis of "trigeminal neuralgia"?
Unrelenting activation of the trigeminal nerve has been described as causing pain such as what you seem to be experiencing.

(c) Is there a "pain clinic" in your town or region that you might access (if you haven't already)? I've not been to a pain clinic myself.
But some posters here have found great support and therapeutic help from personnel who are specifically trained to help people with pain from all sorts of causes.

Perhaps others more knowledgeable than I will come along with better ideas . . . in the meantime, know that I'm sorry that you are suffering and that I hope you find relief.

[ronny]

i truly feel for you, alot of us have been there at one point or another, keep making calls to doctors, until you find one that can help. do not give up, things will improve. i know the hopeless feeling you are having, and the terrifying thoughts that are going thru your head, be strong, there is a solution to give you relief.

[ronny]

trigeminal neuralgia, would be a good thing to ask your doctor about, there is a medicane called lyrica, that is a miracle drug for some with that problem.

[calli66]

hello iwubit,

Sorry to hear you are in such awful pain. Ronny and Mary's ideas are excellent. I just wanted to add one more thing. When you go to a doctor, bring a spouse or friend with you, so they can help take notes, and back you up so you don't forget anything. Even if they don't say anything, they support you.

Calli

[Esencia]

Dry eyes pain

I am so sorry for the pain you are in, as I am too. I have dry dry eyes have seen about 4 doctor from different university and I am still the same. I do wear motorcycle glasses, they help a lot. I take one Tylenol 2 or 3 time a day. But I am still in terrible pain. I am now 59 and I started when I had a car accident at 50. One doctor said it is my menopause or this or that. I really thing they don't know. Also I have met some younger ladies who have dry eyes one is about 20 years old and the other in her 30's and also in lots of pain. So I wonder why they have a problems when they are so young. They sure aren't in menopause like some doctors say. I do use restasis it helps a little and I have use it for a long time, but their is no other meds for dry eyes yet. Hope you keep looking for some kind of relived from the pain.

[dianat]

iwubit,

You should post directly in the Dr. Latkany forum, not the open forum to get him to respond.

Diana

[magoo]

relief when swallowing

Iwubit, I'm so sorry you are suffering so. It really struck me that the relief you feel upon swallowing may be an important clue to the cause of your pain.
Have you made this fact clear to your doctor? Perhaps there is a connection in the nerves used in swallowing and the nerves near your eyes. Just a thought.
Lynda

[alywankin]

chewing and dry eye pain

That is so odd that you mention the eating and dry eye relationship as I was just going to ask that question myself. I have also noticed that while eating and swallowing my dry eye pain lessens.

I thought perhaps it was the chewing motion itself that maybe loosened up those lacrimal glands so have just started a self test with chewing more gum (so far that doesn't seem to recreate the relief).

Maybe its more of a saliva thing? Or maybe it is a swallowing thing? Anyone else notice this phenomenon?