Diagnosis


Posted by Linda in CA (Linda Tuttle,Linda in CA), Mar 17,2002,15:45   Archive
Last week was a "bad one." Hardly able to open my eyes, decided to give up driving. My husband was supportive, but I was terribly frustrated and angry. So, I spent time writing this piece of prose:

Perfect vision enslaved by eyelids deaf to the mind's commands.
Body frozen in place as silent screams demand the lids to open.
Unwelcomed darkness interrupting life at unexpected times.
Fingers guided by firm resolve force lids open.
Ah! the eyelids opened once again
And eyes quickly gasp and devour as much as time allows,
Before the belligerent lids escape the hold and slam shut.
How many times can this event take place in a day?
Three? Four? A hundred times, or more?
This is life with BEB

Then Monday I finally saw the neurologist and he confirmed what I already knew. "BEB/Meige syndrome" So, I came home and wrote this:

Doctor's knowing gaze, the air thickened,
A diagnosis. Words spoken aloud, "BEB/Meige."
The words stirred the emotional cauldron within,
Doubt, frustration, and fear, sprinkled with sadness and anger.
Steadfast resolve, bolstered from a calm, firm inner voice -
"You are okay.
Life is multifacted - this is a dark side, but only one side.
Do not remain in the darkness.
Reach out, live, move, seek light and laughter.
Follow the sounds of happiness.
Learn to appreciate the texture of life.
Sigh, cry, let the past die.
Be open, surround yourself with a cirle of suport.
Plant seeds of appreciation
And nurture expectations of love and beauty and peace.
When eyelids close commit to holding a vision of hope."
I am more than a diagnosis!

At times I may need to be reminded - and I know where to come to find that support. Thank you to everyone who has made this BEB BB possible - and to all of you who participate. I admit that lately I have just been a "lurker" <;-)

The doctor prescribed Klonopin, which seemed to help enough so I felt safe driving for a few days. However, yesterday and today have been difficult. It is time for me to increase the dose, so maybe that will help. He wants to try Neurotin and Artane before referring me for Botox. I am so thankful for having a doctor who finally has taken an interest and recognized what it was, that I am willing to work with him.

In the meantime, I know this has been discussed before, but I would really appreciate everyone who has felt that they have gotten relief from vitamins and herbs, to list out what they are taking and the doses that they foung to be effective.
Flowers of appreciation from sunny Central CA





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Re: Diagnosis

Re : Diagnosis --- Linda in CA
Posted by Lynn Yarbrough , Mar 17,2002,17:10 Top of Thread Archive
Sorry about your situation, Linda. I can empathize with the despair your must have been feeling this past week or two. But I must say I like your attitude and your skill in describing your feelings. Thanks VERY much for your poems. With your permission, I think I might use them the next time I meet with the Braille Institute, to explain to them that it is not only eye disease but dystonias that blind us.

Thanks,

--- Lynn




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Re: Diagnosis

Re : Re: Diagnosis --- Lynn Yarbrough
Posted by Linda in CA (Linda Tuttle,Linda in CA), Mar 17,2002,20:00 Top of Thread Archive
It would be an honor to participate in any way that would help others to understand this strange disorder. You gave me a great idea when you mentioned the Braille Institute. I teach a class at the local college on the Introduction to Disabilities (whoever thought I would be sharing such a personal story with the class). As part of that class, I have the Braille Institute come for an evening - I am looking forward to sharing BEB information with them that night!! Thanks for the idea



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Re: Diagnosis

Re : Diagnosis --- Linda in CA
Posted by Shirley-Arkansas-USA , Mar 17,2002,17:12 Top of Thread Archive
Hi Linda, I could certainly relate to your well written prose. It was indeed experiences that we on this bulletin board can understand and share with you.
It is a relief to get a diagnosis but also a sad time. I'm glad that you found a doctor that you can work with. That is so important.

I've tried many different vitamins and herbs but none of which made any difference in my symptoms. I'm sure that others will share things that they feel may be helping them. I'm game to try anything that doesn't harm me.

Shirley in Arkansas
Below is a link to the bb pages where we did a "What works and what didn't" quite a while back. Just keep scrolling down and skip over the "fluff" and you'll probably be able to pick out some things to try.

http://www.blepharospasm.org/forums/beb/archive/6233.html


--modified by Shirley-Arkansas-USA at Sun, Mar 17, 2002, 17:17:39




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Re: Diagnosis

Re : Re: Diagnosis --- Shirley-Arkansas-USA
Posted by Linda in CA (Linda Tuttle,Linda in CA), Mar 17,2002,20:09 Top of Thread Archive
Thank you for the web infor. I have copied off the pages and will read tham as my eyes allow. It looks as if there was alot of good suggestions. After I read it all, I will most likely be back with specific questions on how well some of the thinks have continued to work for everyone since 2000/ I noted that Delaine said she received relief from Klonpin and herbal supplements, so I hope she reads this and responds. It is so great to have people who do understand. Thanks!



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Re:Linda/Lynn

Re : Diagnosis --- Linda in CA
Posted by Sally - in - Idaho , Mar 17,2002,21:11 Top of Thread Archive
Hi Linda, Your prose was very well written and said a lot! Lynn's idea of sharing it with the Braille Institute is a sure winner. It explains the situation well. The two of you are doing a great job of getting the message out in California.

Don't feel guilty about being a lurker, Linda. We know there are many out there and that all will post (or not) when they are ready. In the meantime, we talkative ones try to come up with topics that might be of interest to those in the shadows.

You have adopted a good attitude and your prose is a way of release that will be tremendous help to you.

Sally in North Idaho BEB/Meige




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Re: Diagnosis & writing

Re : Diagnosis --- Linda in CA
Posted by Delaine Inman , Mar 17,2002,22:02 Top of Thread Archive
Wow Linda, you write beautifully what we have all felt. I've written most of my life and it is great therapy and it was great that you shared such personal feelings with us. Bless you and welcome to the BB. Yes I take Klonopin and herbs. I've tried a ton and spent a fortune and really don't want to give the long list I'm doing now until I know it has worked. Some things that I think have worked some in the past are Moisture Eyes (I liked the ingredients). Spiru-tein ( I like the comprehensive ingredients and extra protein). I got them through the local health food store. Eyebright Plus from Nature's Sunshine which has Bilberry concentrate, Lutein, and Vit. A. Some things I have tried that didn't work for me (and what works or doesnt' work for one doesn't mean you would have the same experience): Super Blue Green Algae, Ambrotrose, Noni, & Oregon Grape Root. There may have been other herbs, but can't think without looking up my list. I've tried the drugs Guafenisen (which is found in Ru-tuss, non-drying Sudafed and plain Robitussin), Periactin, Neurontin, Scopolamine patch, Zoloft, Benadryl and Elavil(which I was on for years for fibromyalgia, but helps some with BEB/& other dystonias). I went over 5 months without Botox, but the last 3 weeks got tougher, so I got 32 units this past week. Of course the 2 days before my appointment I had better days and things have been about the same since. Today may have been better than most for a long time. I think the combination of my partial myectomy and small doses of Botox stops a lot of the really hard squeezing that is so uncomfortable and stops me from driving. Never give up on finding the right combination.
It's been raining for days and no end in sight. Flooding all over the state. I live on a hill so I'm in no danger.



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Re: Diagnosis

Re : Diagnosis --- Linda in CA
Posted by Carol Arp , Mar 17,2002,22:56 Top of Thread Archive
Thank you for giving me the words I have always searched for to share this with my loved ones. You are amazing.



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Re: Diagnosis

Re : Diagnosis --- Linda in CA
Posted by June in Toronto (June Floyd,June in Toronto), Mar 18,2002,05:23 Top of Thread Archive
Thanks for your words of explanation on this disease, Linda - you said what most of us feel, but couldn't explain so eloquently. I hope you have a better week ahead.

June in Toronto (beb/meige)




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Re: Diagnosis

Re : Diagnosis --- Linda in CA
Posted by pippa (Pippa,pippa), Mar 18,2002,15:30 Top of Thread Archive
Your poems broke a dam within me..I have cried and cried and have managed to release a lot of bottled up emotion, which can only be good for me in the long run! How wonderfully you have expressed in words the varying emotions and feelings that only we who have this "nuisance" in our lives can truly understand. I too with your permission will use this to explain about it to people to help them understand. I think that other people do not really understand the frustation and sometimes anger when your eyes close and i think sometimes they think that we can control it. I do sometimes demand within myself (silently scream?) "OPEN! OPEN!"
I have only been diagnosed with blepharospasm since Christmas and I haven't contacted the Institute for the Blind yet. I am not sure what they can do for me? Am I regarded as partially sighted now?
Thank you again. You have a gift for poetry and expression and I am glad that you are using it for our benefit, to help us all in differing ways. Let's have some more when you are feeling better, please. It needn't be about bleph but just anything to amuse, intrigue or interest us.
Pippa with the red eyes now as well as the silly grin!



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Re: Good Cry

Re : Re: Diagnosis --- pippa
Posted by Sally - in - Idaho , Mar 18,2002,22:52 Top of Thread Archive
You look lovely, Pippa. We all need those red eyes every now and then. They can spell RELIEF.

Take care.

Sally in North Idaho who also loved Linda's prose and hopes for more.




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diagnosis thoughts

Re : Diagnosis --- Linda in CA
Posted by Linda in CA (Linda Tuttle,Linda in CA), Mar 19,2002,00:02 Top of Thread Archive
I am please if the words were helpful in expressing the feelings that are so bottled up. I debated about sharing them since I had not "worked" on them, but just let them flow from my heart. I hope that any of you who want to use them will do so and change them as they fit for you. I hadn't written anything in a long time - I guess I needed to be spurred by deep emotion, and for that part I am thankful.

Regrading what the Braille Institute will do for any of us - It is a free service that offers training on how to adjust to vision problems, all types of equipment, such as tape recorders to play the books and magazines that they have available on tape. All of these services are free to anyone with vision problems, or someone who is unable to hold a book or read for whatever reason. I have worked with the Braille Institute for several years and referred many people. I just never knew I would be needing their services for myself. Life has so many interesting twists and turns!!!
I have heard that tears have healing qualities, so may you experience the true healing relief that only a good cry will bring to us. Maybe it's the bromine? :- ) Blessings! Linda




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