Sudden, intense pain started suddenly in 3/05; searing, welding sparks, sizzling bacon frying on lower lashline. Pain is much worse at times but not trigeminal neuolgia like more constant and in both eyes. Been to Mass Eye & Ear, Tufts-13 opth. in all. Can only see that I have dry eyes, put in plugs and pain intensified severely had to have all attempts at plugs removed. Rheum. tests: ana elevated but biopsy for sjogrens neg, sclerederma neg, all specialized tests neg. Thyroid hyper for several months now normal, iodine uptake fine. "medical reasons" for pain unknown to all the specialists I've seen. Put in hospital in 6/05 due to suicide risk. Was put on Cymbalta, Gabapentin, Tramadol, Methadone, Lorazepam. These medicines together have made life "bareable". Can't work (no disability), have to lay down every afternoon to rest eyes. I do use Restasis and thera tears for the dry eye but I know this pain is not dry eye related. Pain is searing, like someone frying bacon on my lower eyelids-both eyes equally affected. Pain does come in waves where it is more intense at times but is pretty constant just "in the background" thanks to the drugs. Not trigeminal-like. Husband has friend in Ireland who said he suffered with the same kind of debilitating symptoms for 3 years. Came on sudden, couldn't work, keep his eyes open, and then was gone as suddenly as it came on. Possibly shingles virus? MRI showed nothing. Doctors clueless, 2 have suggested "it's all in my head". I do see a phyciatrist due to my suicide risk back in 05. My life was perfect and wonderful before I went grocery shopping back in 3/05 and was suddenly blinded with pain, eyes feeling like sharp ice pellets were being driven into them, lived with eyes shut because of pain and light sensitivity until drugs helped, sleep was my only relief until then. March 08 marks my 38th birthday and my 3rd year with this.
Well you've seen some of the best medical centers for Eye Care in the world and I don't think I can add much. These would be my thoughts. If this was vision or life-threatening you would probably be dead or blind by now. Second you can always hope that it goes away as did the case in Ireland.
You might consult with a good pain center and try pain therapy including a trial of acupuncture. I've seen that help when done by an experience practitioner. There are even MDs that do acupuncture. Also trial biofeadback and relaxation therapy. It is possible that there is a psychological/psychiatric basis for this.
Might discuss a trial of neurontin or tegratol with your neurologists.
I am going through the exact same thing, except mine is the upper lashes. I am taking botox for it or would otherwise have already killed myself. The pain is unbearable. Botox relieves it enough to live, and insurance is covering it. My doctors are as clueless as yours - I've seen optho, neuro, optho-neuro, auto-immune, family pract, rheumatology. The only thought is possible side effect to topamax, or my immunology doctor said it could be thyroid attacking the tear ducts causing the nerve damage. We are trying synthroid but so far nothing. I can't stand for my lashes on the top to even grow. I pluck them out - so everyone with very few exception thinks I am nuts. It is aggravating to be in this much pain and not know why or how to fix it.
I am so sorry to hear that someone else suffers with me. I haven't heard that your thyroid can attack your tear ducts. The only thyroid related eye disease I know of is Graves. I'm sure you can read with me that yet another doctor has mentioned a "psychological" possiblility. The only "crazy" thing I suffer with, and have ever suffered with, is from the pain. I wish I could somehow "give" this to a doctor for just one day so they could understand. It's so difficult for even me to describe and I'm the one who has it. I'm interested in learning how the Botox works. Did it come on you suddenly? I was fine one minute and in horrible pain the next. I'm not familiar with synthroid or topamax. Ironically, I didn't take meds for anything (not even tylenol) prior to this. I did have some intense pulsed light therapy done on my face to combat some redness I had. The pain did start not long after I had that done but I had 6 treatments so I have no idea if it ties in with this. The doctor who responded also suggested neurontin (which I'm already on) and this has helped. I also did go to a pain clinic and they are the ones who put me on the tramadol and methadone. The psy. added lorazepam. Cymbalta is an anti-depressant but it also works to treat nerve pain. Have you had any bloodwork done to see if you have antibodies to the Herpes virus? I don't have the "herpes virus" that gives you cold sores or the STD but it did suggest I may have had a shingles attack (chicken pox virus related) I'm still waiting for my husbands friend from Ireland to contact us again so I can try to find out what else he knows. He couldn't believe someone else had the same symptoms as he did. Oh, how long have you suffered with this? I have so many questions but I need to stop now. Computer kills my eyes.
My immunologist suggested the thyroid may be attacking the tear ducts, causing the nerve pain. He has never seen it before, so it would be very rare. The synthroid is for the thyroid. I have been treated for 2 years now for the eye pain, but only a few months for the thyroid. I have been sick for about 7 years. I am diagnosed with migraine. I have bad migraine headaches, vertigo, numbness, passing out, memory loss, speech and visual problems. I took topamax for years for this, but came off of it when my eyes got so bad. The topamax is causing eye problems - even blindness. Botox is the only thing I have tried that provides any relief at all, and it is instant relief. It is about 2k per treatment, you get it every 3 months. Insurance has covered mine so far - thank God! My eye doctor owns a day spa and she got it approved for me. I've been more than blessed in finding her! She has saved my life this year - literally. I tell her all of the time that I am going crazy from the pain. I take lyrica 50mg for the nerve damage. They are working me toward 300mg/day. My doctors claim it is safer than neurotin, but I don't know. My neurologist, optho-neurologist, and immunologist all said the lyrica is a safer drug. You might want to see about trying it. It helps, but it isn't enough without the botox. And it takes about a year of botox to feel a huge difference, but 1 injection will be like giving you an energy pellet. I was surprised at how good I felt once the pain was eased. I felt like I was lazy. I didn't want to even get out of a dark room. I stayed inside, in the dark, wearing sunglasses and using hot/cold on my eyes for weeks at a time. I don't have to do that now. I'm still very light sensitive, but only outdoors or under fluorescent lights.
I just got the internet 2 weeks ago so I am just starting to reach out and see who or what I find. I did see alot of info on trigeminal neurolgia and atypical facial pain this AM. Do you know of anyone else that has had similar symptoms? If it's atypical it sounds like there's not alot of hope beyond meds that help reduce the pain to a more tolerable level. I have to say my research has only depressed me. Many people seem to suffer from the same kind of symptoms we have but we all suffer somewhat differently. The similarities are light sensitivity, constant, throbbing, aching, searing, knife-like, welding sparks, worse some days than others. Meds reducing but not stopping pain. MRI's normal, bloodwork usually normal or high ana profiles, sometimes thyroid involvement (in oct I was hyperthyroid, nov-normal, dec-hypothyroid, I am on no meds for it, just "watching"), doctors suggesting "it's in your head"----if so many people have these kinds of symptoms shouldn't doctors start exploring other possiblities other than psycho-psum.?
I also have nerve pain in the lower eye/eye lid area that's very similar to unnerved. My pain gets so intense that it radiates down to my cheek bones and upper tooth region. For me it all started in 6/06 after my LASIK. No physician has been able to provide an explanation. The only thing that has helped make life more liveable has been Tegretol. The Botox sounds interesting. I'll need to do more research.
I did have Intense Pulsed Light treatments done to my face for rosacea just prior to my eyes getting bad. I've always wondered if it had anything to do with my nerve pain. Actually, the pain of the IPL and the pain in my eyes (zapping, searing, burning) is somewhat similar. Is it possible the lasers, IPL, and whatever else they do around our eyes is somehow causing damage to our nerves? 3 years and I'm no better. I don't know who else to see, what else to do, surgery?, is surgery even an option for me? Some days I just want to give up.
Don't lose hope! I've recently started cranial sacral massage therapy and it has provided some eye/face pain relief. There are other things out there to try as well. Unfortunately, it's a long road and sometimes it's one step forward and two steps back at times. However, it appears that both you and I are diligent in our pursuit to regain at least some form of our previous quality of life. Warm regards.
I had IPL done near my eyes and shortly after I experienced eye pain and massive floaters in my eyes. I have experienced this for 9 months now with no end in sight. Eye doctors cannot find out what went wrong but my life is horrible now. The pain worsens throughout the day. There are confirmed cases of IPl causing eye damage. Google it an dyou can find the damage to the iris people have experienced. Something went wrong and I'm betting IPL was the cause. The paper shields don't protect the eyes from the heat of the machine if used too closely to the eyes. Part of my procedure was used with no eye shields at all....
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