Is this Blepharospasm? long message


Posted by Dawn , Apr 09,2002,13:04   Archive
Hello,
My Mom may or may not have Blepharospasm. In early January she visited the opthamologist because her eyes were very dry and gritty feeling. We had been cutting firewood a few weeks earlier and even though we used safety glasses, it was possible a bit of sawdust could have gotten in her eyes. She was passed between three different doctors and was diagnosed as having ocular rosacea. They put plugs in her tear ducts and prescribed doxycycline. At this time she was told about essential blepharospasm and that she may have the early stages of this condition, because she had an upward twitch to her eyebrow.

Since that time her eyes have gotten progressively worse. They are sensitive to light and when she has them open, they are uncomfortable and sting as though having been squirted with lemon juice. She does not have problems opening her eyes but now needs to use her fingers to keep them open in order to do her job. I understand that blepharospasm can be "brought on" by the body trying to cope with a different problem.
She has not seen her opthamologist since late February and is not scheduled for another appointment until early May. I've been encouraging her to contact the doctor because I'm afraid that the more time that passes without proper treatment, the worse the problem will become. There seems to be so much guess work in trying to diagnose her because she doesn't have all the symptoms for any of the diseases.

She's not losing her eye lashes, never had any discharge or pus nor scabs on her eyelids. She's not squinting but is now starting to use "tricks" with her mouth or jaw to keep her eyes open. We both have been trying to find answers through medical books and internet, but nothing seems to fit her condition. Even the ocular rosecea doesn't seem to fit.

Is this how essential blepharospasm starts? Besides the doxycycline, she uses warm compress on her eyes morning and night, squeezes her oil glands at least twice a day and washes her eyelids. She also has heavy "refresh" eye drops and steroids that she can use, but she tries not to use them at all, thinking she may be promoting her eye reaction by using the drops too much.

I would be interested in hearing how her situation compares with how others are diagnosed. She's still being treated for just the ocular rosecea, not the blepharospasm.

Thank you.




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Re: Is this Blepharospasm? long message

Re : Is this Blepharospasm? long message --- Dawn
Posted by Shirley-Arkansas-USA , Apr 09,2002,13:49 Top of Thread Archive
Dawn, it is so nice of you to check on this for your mom. Her symptoms may or may not be Blepharospasm. You could contact the Benign Essential Blepharospasm Research Foundation (BEBRF) and request a list of doctors knowledgeable about BEB in your area and information on BEB.
She could be having a reflex blepharospasm in response to the eye irritation from the sawdust since this is when she first noticed the problem. She could also be having a reaction to the Doxycycline or the steroid drops or the preservative that is in either of these eye drops. A preservative free eye drop would be best to use every couple of hours for a dry eye problem and an eye ointment at night. I do feel that she needs to go back to the doctor as soon as possible since she is continuing to have problems.
The symptoms that you describe are indicative of Blepharospasm but could be from irritation and dry eyes brought on by the firewood cutting.
She needs to go back to the doctor.

Best of luck to you and let us know how she does and feel free to ask whatever questions you like.
You might also check at the top of this bulletin board page and click on BEBRF Main Page and read the information there.

Shirley in Arkanasas with BEB/Apraxia




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Re: Is this Blepharospasm? long message

Re : Re: Is this Blepharospasm? long message --- Shirley-Arkansas-USA
Posted by Dawn , Apr 09,2002,15:16 Top of Thread Archive
Shirley,
Thanks for your reply. The eye drops that she's been using are preservative free as well as the eye ointment at night. She tries not to use them, but...

It's good to hear your opinion that she should contact her doctor ASAP. I'll keep trying to convince her to go.
Dawn




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Re: Is this Blepharospasm? long message

Re : Re: Is this Blepharospasm? long message --- Dawn
Posted by Virginia , Apr 09,2002,15:48 Top of Thread Archive
It is likely that she will do more damage to her eyes by NOT using the drops and ointment than she will by using them, as long as they are preservative-free. Dry eyes can have serious consequences even if she doesn't have BEB.

Virginia in AL




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Re: Is this Blepharospasm? long message

Re : Re: Is this Blepharospasm? long message --- Virginia
Posted by Gisela (Gisela Rentmeister,Gisela), Apr 09,2002,17:01 Top of Thread Archive
This is something I agree with you 100 percent, Virginia. Dry eyes would have serious consequences, and replacement of our natural tears by using drops and, to keep them moist, ointment at night is an absolute must for everyone who's Botox injections prevent eyelids to do their efficient job of tear production.
I need to have drops with me at all times, otherwise my eyes will soon get gritty and burn a lot.

Gisela




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Re: Is this Blepharospasm? long message

Re : Is this Blepharospasm? long message --- Dawn
Posted by June in Toronto (June Floyd,June in Toronto), Apr 09,2002,15:07 Top of Thread Archive
Hi Dawn, that's so nice of you to check things out for your mother. I believe Shirley has answered you fully - she's a nurse so you can trust what she says. Your mother should go back to her doctor. I wish you both good luck.

June in Toronto (beb/meige)




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Re: Is this Blepharospasm? long message

Re : Is this Blepharospasm? long message --- Dawn
Posted by Dawn , Apr 09,2002,18:26 Top of Thread Archive
Thanks everyone!

I'm going to pass all this information on to my Mom. I think she was afraid that by using the drops so much that she might be developing a reaction to them. The first doctor said that she might have brought on the original symptoms herself by using OTC drops so much when her eyes were first dry and gritty.

Thank you again.
Dawn




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Re: eye drops

Re : Re: Is this Blepharospasm? long message --- Dawn
Posted by Shirley-Arkansas-USA , Apr 09,2002,20:08 Top of Thread Archive
Dawn, I really don't think that your mother would be causing a problem with OTC drops that are preservative-free. We're talking drops here that don't have any "redness-removing" agents or antihistamines, etc, in them. Just plain old drops like Tears Naturale, Refresh, TheraTears, Celluvisc, GenTeal. Nothing with "added" ingredients in them. She could cause a problem with them by masking symptoms so check out what OTC drops she is actually using.

Shirley in Arkansas with BEB/Apraxia




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Re: eye drops

Re : Re: eye drops --- Shirley-Arkansas-USA
Posted by Dawn , Apr 10,2002,09:52 Top of Thread Archive
Hello Again,
She's been using Refresh, Celluvisc and GenTeal. Mostly the Refresh heavy lubricant single dose drops. Prior to her initial doctor visit in January the OTC drops she used were not preservative free. It was these drops that the doctor said could have brought on her initial problems. We never knew to look for preservative free eye drops before this.

I told her about this message board and the responses I received to her situation. I believe she's going to step up the use of her eye drops and lubricants. As far as contacting her doctor, she doesn't know what to say to him. I'll keep encouraging her to call.

I'm also going to see if her doctor is listed on this web site as a specialist on blepharospasm!
Dawn




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Re: Is this Blepharospasm? long message

Re : Is this Blepharospasm? long message --- Dawn
Posted by Sally - in - Idaho , Apr 09,2002,18:51 Top of Thread Archive
Hi Dawn,

Welcome to the BB, it's a great place to come for answers and suggestions. What a "good girl" you are for looking out for your mom!

You're received good, thorough answers above and I would only back up the urging that your mom return to a doctor soon and that she continue to use the artificial tears. She might also try lid scrubs ... cotton balls dipped in very warm water and then a drop of Johnson's baby shampoo. Scrub the lids and rinse with clean cotton and clear water.

I also have rosacea, had it long before the diagnosis of BEB, and it can affect the eyes. There is no known connection between the two, but no reason that one cannot have both at the same time and just complicate things a bit.

Good luck.

Sally in North Idaho where it's grey and trying to sprinkle. BEB/Meige




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