blepharospasms and Blepharitis

Posted by emer101 @emer101, Aug 26, 2011

I have had blepharospasms since 2004; the last two years I have had major vision problems with no answers except botox injections that do not completely stop the spasms; recently I’ve had a terrible time with my eyes and just found out today I have a condition called blepharitis. I am happy about it because it is the first time I’ve been given a name, reason, etc that is the blepharitis. I’d like to converse with other people who suffer with these conditions. Thank you.
Emer101

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I started having eye issues about 2 years ago. I went to several doctors before I felt I found one that I felt understood my conditions. The first doctor said I had “dry eye”. The 2nd said I had “Blephoratis”. The 3rd diagnosed by condition as Blephorspams and suggested I see a Neurological Movement Disorder Specialist. He diagnosed me has having “cervical dystonia” and dystonia of the eye which caused the Blephrospasms. I have had 3 visits with him (every 3 months) in which he injects Botox into my neck and eyelids. The treament has helped, but only provides partial relief and only for a few weeks. I am currently considering a 2nd opinion to see if another Neurological Movement Disorder Specialist woud suggest the same thing or to see if other treatments are available. I am trying to get into one of the Mayo clinics to get their opinion. What treatments are you receiving?

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I have generalized dystonia and blepharospasms plus, I have had the face surgery twice, this second time they put liters in my lids so I can open and close them, less shots too.

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@cowgirl

I started having eye issues about 2 years ago. I went to several doctors before I felt I found one that I felt understood my conditions. The first doctor said I had “dry eye”. The 2nd said I had “Blephoratis”. The 3rd diagnosed by condition as Blephorspams and suggested I see a Neurological Movement Disorder Specialist. He diagnosed me has having “cervical dystonia” and dystonia of the eye which caused the Blephrospasms. I have had 3 visits with him (every 3 months) in which he injects Botox into my neck and eyelids. The treament has helped, but only provides partial relief and only for a few weeks. I am currently considering a 2nd opinion to see if another Neurological Movement Disorder Specialist woud suggest the same thing or to see if other treatments are available. I am trying to get into one of the Mayo clinics to get their opinion. What treatments are you receiving?

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I TOO HAVE SEVERE EYE PROBLEMS MANY OF WHICH IS BLEPHERITIS, DRY EYE, AND EYELID INFECTION. I HAVE BEEN OPERATED ON TWICE IN 4 MONTHS TO NO AVAIL. I AM N CONTANT PAIN 24/7 AND MY CATARACTS WON’T BE REMOVED BECAUSE THE DRS WANT MY EYES IN BETTER CONDITION BUT HAVE NO WAY OF GETTING THEM THERE. DO ANY OF YOU HAVE ANY IDEAS. I WILL STAY IN JAX FOR AWHILE IF I CAN BE TREATED BUT NOT IN THE SAME WAY AS I HAVE BEEN TREATED IN GA. DROPS DROPS HOT CLOTHS, COLD CLOTHS. BEGINNING TO THIN AND KNOW WHY GA IN THE ON THE BOTTOM OF THE MEDICAL WORLD. THANK YOU-PEPPER.

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I saw where at UC SF doctors have tried DBS with success in several cases. I am going to investigate further and also see if Mayo is having any trials.

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Hello, I have blepharitis. It was diagnosed on the side during my map dot fingerprint problems. Crusts would fall into the eye and damage the already very vulnerable cornea. Now I polish my eyelids two times a day. After waking up and before going to sleep. With tissues especially for this condition. It is costly but the blepharitis is under control now.

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,,,i was given cloths to clean for this but not just wiping eyelid, instrutions say after top row of eyelashes then wipe between the lashes on lower lid and the thin line of skin nest to eye; no way i can do that without poking cloth in eye..they said if that happens and eye stings, rinse with distilled water..li cant do that either… so the box is sitting on my dresser! $$$ as it is have glaucoma, dry eyes and floaters and the thought of poking myself ineye with eye cleaner scares me….

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About Blepharitis. Many docs (and thus patients) do not know that these bleph.. disorders are often , perhaps usually, a symptom of a genetic disease, Amyloidosis. I got this from a Mayo medico in Phoenix several years ago. It grows about the same rate as do the Torres del Muir (Muir-Torres), and may be the same package. Amyloidosis is often called "Corneal Lattice Disease." These are very slow growing. oldkarl

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@lacy2

,,,i was given cloths to clean for this but not just wiping eyelid, instrutions say after top row of eyelashes then wipe between the lashes on lower lid and the thin line of skin nest to eye; no way i can do that without poking cloth in eye..they said if that happens and eye stings, rinse with distilled water..li cant do that either… so the box is sitting on my dresser! $$$ as it is have glaucoma, dry eyes and floaters and the thought of poking myself ineye with eye cleaner scares me….

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I too suffer from glaucoma and dry eyes and am very subject to eye infections.I just don’t produce enough tears to wash out an errant eyelash, a tiny dead skin cell, or a bit of makeup. My ophthalmologist has me using twice a day an eyelid wash called Ocusoft Hypochlor. It comes in a spray bottle, and I order it from amazon. I spray it on a “Swisper,” which is a super-soft, quilted cotton round, using a separate one for each eye in order to not spread infection. I buy the Swispers in bulk at Costco, but they are readily available at drugstores and grocery stores. Then I finish up with artificial tears, using the kind without preservatives because my eyes get red from the preservatives. It may also help to use a whole-house or room humidifier, because your eyes will dry out even more in heated indoor air. Or, as a college student suffering from a cold once told me, “You just throw lots of wet towels around.” In addition, for 5 minutes every morning I sit blindfolded by a heated (20 seconds in microwave) Thermalon Dry Eye Compress which stimulates the tear ducts in the eyes. You can do strength training for those 5 minutes with a pair of lightweight barbells!

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@tomarrieta29

I saw where at UC SF doctors have tried DBS with success in several cases. I am going to investigate further and also see if Mayo is having any trials.

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@tomarrieta29, to find clinical trials currently recruiting at Mayo Clinic, you can use Mayo's clinical trials search tool here:
https://www.mayo.edu/research/clinical-trials
Sometimes the eligibility criteria can be a slog to wade through, so Mayo also provides a phone number or online form to take to a study coordinator about available trials. See:
NON-CANCER CLINICAL STUDIES QUESTIONS
Phone: 800-664-4542 (toll-free)
https://www.mayo.edu/research/forms/clinical-trials

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