Blepharospasm Bulletin Board

Newly diagnosed
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Posted by: Karen
02/19/2004, 22:09:47


Hi.

I've recently been diagnosed with Blepharospasm and will receive my first injections of Botox tomorrow afternoon. I am hoping I respond well to this treatment.

It's been a grueling few months, that's for sure.

My eyes have been sensitive to light for quite some time, but in the last year it has become much worse with a lot of squinting that would actually hurt and bring on a migraine. Then this past summer, I thought perhaps I just had dry eyes from allergies because I was outside a lot doing yard work, etc. But, as fall came and then winter, the eyes only got worse.

It is now to the point where I can hardly keep the eyes open. The squinting only leaves little slits through which to see. I have limited driving the car until it is dusk or is a very dark, dreary day. Even oncoming headlights at night are aggravating, so I don't drive when it's dark out either. I just can't stand the light sensitivity and it makes my eyes water. It's so hard to see out of these little slits. I know it's dangerous to drive like this, so I don't go far. Sunglasses are a must. Can't be without them.

I'm only 54 and feel like I'm loosing a good share of my freedom from this horrible disease.

I've been under the care of a good Opthamologist.

Wish me luck!

It's so nice to know there is a support board. I'm going to need all of you!

Thanks so much for being here!



Modified by Karen at Thu, Feb 19, 2004, 22:38:26

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Replies to this message


Re: Newly diagnosed
Re: Newly diagnosed -- Karen Top of thread Archive
Posted by: June in Toronto
02/20/2004, 06:29:38


Hi Karen and welcome to the beb bulletin board. So sorry you had to join us with this disease but we are here to help as best we can. I've had beb/meige for 9 years now and receive 90 units of botox every few months - I'm one of the lucky ones that botox really helps and I don't get it as often as many others. You certainly have all the symptoms - dry eyes (use lots of preservative-free drops/creams and especially at night) and slitty eyes. I'd suggest you make note today when you get your botox inejctions of the sites the doctor used (he/she can give you a printout of the face and mark the sites) also the amount of botox units used. Then keep a journal of your daily response to the injections - this will help you and the doctor to fine tune the injections the next time around to give you maximum relief.

Most of us find sunglasses, and sometimes two pairs, and a hat with a brim are a must. I don't drive at night at all - can't tolerate the lights. As a passenger in the car at night I use an extended amber-coloured visor with a piece of cardboard pegged to it - it stops the oncoming lights from reaching me butI can see sideways out of the window so it helps with any nausea from the motion. There are many `tricks' we use and you will find them all out by letting us know how you are doing. WE care. best wishes

June in Toronto, Canada that is




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Re: Newly diagnosed
Re: Newly diagnosed -- Karen Top of thread Archive
Posted by: Barbara
02/20/2004, 09:08:24


Hi Karen. I was diagnosed at 44 while teaching. My sysmptoms cam on very quickly with very irritated and scrtching eyelides. The excessive irratation and anxiety caused and increased blinking effect and Voila Blepherospasm and quite soon after Meige. I did not k now how to work a computer until two yers ago and just discovered this board 6 months ago. I have learned so much here and by very supportive people. Give yourself some time to get your botox shots to ork properly. It is often a guessing game at first with your doctor as to where to put the shots and how many units to use. I think it took me over a two years and several doctors before I found the proper treatment. I still over 2 hours to see him but it's worth it. Don't be scared. The mental part takes a while to have a complete reserval of lifestyle. If you get depressed or the blues the board will often support and help you through it. The members of this board are the only ones that truly understand what it means to have Bleph and meige. Even the doctors don't understand many issues like light sensitivity issues, why you tend to spasm more in social contacts and then why you seem perfectly normal in the doctor's office. Plese feel free to ask as many questions as you need and welcome aboard. Barbara



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Re: Newly diagnosed
Re: Re: Newly diagnosed -- Barbara Top of thread Archive
Posted by: Ann Doyle
02/20/2004, 11:09:40


Yours started out just like mine. I thought I had allergies too. It took me two years to get diagnosed. That was the bad news but when I did, I found a person who had exactly the same thing and a Dr at Vanderbilt who was a movement disorder neurologist. He had been giving Botox since it was first used for Bleph and knew how and where to give them. Now, as I change, we work together. He is a good listener. His office is 2 1/2 hours from my home but he is worth it. I go every 10 weeks but would prefer every 8 but he thinks that is too often. I have tried others and they aren't as good.
I hope your Bleph stops where it is , a lot do. Let us know how you do.And be sure and ask us any questions. We have a lot of opinions since it affects each one of us differently. Is there a support group in your state? Have you written to the BEBRF for material? Ann Doyle



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Re: Newly diagnosed, Karen
Re: Re: Newly diagnosed -- Ann Doyle Top of thread Archive
Posted by: Raymond Fudge
02/20/2004, 11:34:22


I turned 54 about 11 days ago and have been receiving BOTOX about 5-6 years. I tend to become depressed, sometimes very. This forum helps more than anything else I know of to fight off that depressed feeling. Reading all the posts makes me realize 1. I am not alone and 2. There are so many worse off than I am. At least I am am still able to work, even if I bounce off walls walking down the halls. It does me good when some one ask if I am all right, and I can say yes, I feel great. What I do not have to tell is compared to others I know and know of. I "lurk" a lot on the board, and only recently felt the need to also post once in a while. I am looking forward to the conference this year and hope to meet some of the folks that post and have so much to offer by their support, information, and willingness to "be there" for all of us. You have already been answered by a couple of the "best" I have read in this forum. Keep those spirits up.



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Re: Newly diagnosed
Re: Newly diagnosed -- Karen Top of thread Archive
Posted by: Lynn Yarbrough
02/20/2004, 13:15:23


Hi!

Welcome to our friendly Bull. Bd. We know how important it is to have someone nearby who understands our problems and can offer some help from time to time.

Since this is your first Botox experience, you may find it disapppointing for a while. The problem is, you won't notice anything for up to a week or two, waiting for the toxin to kick in. Or the dose may be too small -- Doctors tend to underdose initially, I believe. But when it does kick in, though, you are likely to discover that you lose your sensitivity to bright lights. The reason for this is that when you are squinting and spasming a lot, your irises stay open too long and expose your retinas to lot of harsh light, while mormal people's irises stay small during normal blinking. So when your eyes stay open normally, you are naturally protected from overexposure.

Yes, dealing with the condition is likely to cause you to reassess your priorities, and perhaps give up some pretty important things, including driving whenever you feel like it. It's good that your realize how dangerous your condition is. I got so bad that my wife had to drive herself (and me) to the hospital to deliver one of our children, labor cramps and all. But after a long wait I discovered Botox (just approved by the FDA) and it pretty much saved my life. I hope it gives as much normalcy in your life as it has provided for mine.

Cheers, and hang in there. Keep us in touch as to how you are doing. The condition can be relieved but not cured, yet, so prepare yorself for the long haul.

Cheers,

--- Lynn




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Re: Newly diagnosed
Re: Re: Newly diagnosed -- Lynn Yarbrough Top of thread Archive
Posted by: Lynn Yarbrough
02/24/2004, 14:57:54


Someone asked us be email to elaborate on my wife's experience. Maybe someone else would like to know about this:

"My wife, Pat, and I discussed this today, and in retrospect there are a lot of things that we might have done that made more sense than what we did. Since she is not fully adept at E-mail yet, I will try to respond for her.

I assume it's your husband who has the BEB, as in our case. One question we forgot to ask ourselves in planning was, how does HE get home from the hospital? It turned out to be very difficult for me. We just didn't plan the transportation well at all, and of course it was made worse by happening late at night. Pat was more worried about my getting home than she was for the baby.

We suggest that you ask a very close friend to be on-call for you so that getting back and forth does not create its own crises. Driving yourself may be unduly risky -- if you have a really strong contraction you may find it very difficult to control the car. If you are financially comfortable an ambulance (expensive) or perhaps a taxi (cheaper, but will they get here on time?) is a practical alternative. Or it may be necessary to locate a hotel nearby for a night or two. Also, having a cell phone to call for help on the way may be a life-saver.

The important thing is for both of you to discuss the situation at length, honestly and early, perhaps with those friends who will be helpful at any hour. Don't be ashamed to be needy. That's what friends are for. We had planned with neighbors to keep our other two children for the night, and they were OK with being wakened at an ungodly hour to care for them.

Good luck. Have a great baby. If you have questions I haven't addressed, please ask.

Cheers,

--- Lynn"




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Re: Newly diagnosed
Re: Newly diagnosed -- Karen Top of thread Archive
Posted by: Kathleen
02/20/2004, 15:02:45


I also am newly diagnosed and today is the first day I have been on the BB. It is a relief to know that there are other people out there who are experiencing the same type of thing and have learned to live with the symptoms and / or treatment. Good luck with the Botox injections. I found that I didn't mind the injections at all when I compared it to the spasms I've been living with.



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Re: Newly diagnosed
Re: Re: Newly diagnosed -- Kathleen Top of thread Archive
Posted by: Karen
02/20/2004, 16:33:04


Everyone---thank you so much for your kind responses. I appreciate each and every one of them.

I had the injections this afternoon. She gave me a total of 25 units, injected in 5 different sites around each eye for a total of 10 sites. I am now sporting a half black eye on the ride side. ROTFL. I bruise quite easily, so I'm not surprised.

This doesn't sound like much compared to what some of you have had done, so I'm hoping she didn't underestimate what I needed because I hate to think of suffering for another 3 months now before I can have the botox again. Ugh!

What do you do for sunglasses? I just bought a very expensive pair the other week with wider side pieces to shield out more of the bright light. But I find myself still squinting.

Also, I read some of the other posts last night and a number of you mentioned different supplements you are taking. Where do you purchase them? Did your Doctor recommend them or is this something you have discovered works for you even though the medical profession sort of "scuffs" at it? What supplements will be the most beneficial for me? I also remember seeing somehwere the mention of Thera Tears Capsules. Where do you purchase them, at a drug store?

Is there anyone else on this BB that suffers from Fibromyalgia and IBS? I have both. Just wondering if/how this all plays in to the scenario.




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Re: Newly diagnosed
Re: Re: Newly diagnosed -- Karen Top of thread Archive
Posted by: Barbara
02/20/2004, 16:55:23


I think alot of us have fibromaylgia. I think the stresses of having a chronic condition helps bring out the firbro monster Barbara



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Re: Newly diagnosed
Re: Re: Newly diagnosed -- Karen Top of thread Archive
Posted by: June in Toronto
02/21/2004, 05:57:20


Hi again Karen, did you stop taking blood thinners 2 weeks before your injections, i.e.,aspirin, vitamin E (perhaps there's more) - that helps in stopping the bruising somewhat? I've had a few shiners! I've only attended one BEBRF conference (would like to go them all as it was so very informative and comforting to meet others) but remember a doctor there telling us to take extra Zinc 2 weeks before and after the injections (he said it made the botox work better). I do this.

The sunglasses I have (several pairs) -some have pieces across the top as well as wide sides, others simply wrap around completely. The answer for me with the cold wind especially would be to wear ski goggles BUT...I've got a little bit of vanity left in me and can't imagine going down the street with bright coloured, huge goggles, with Canada or something similar written across the head band:-) I do have a pair of safety (cheap) glasses with plain lenses that I wear at night if its cold and windy and I have to be outside for a short while - they help. Sometimes I have to wear 2 pairs of sunglasses and a wide-brimmed hat -whatever it takes tohelp. Hopethis helps.

June in Toronto, Canada




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Re: Newly diagnosed to June
Re: Re: Newly diagnosed -- June in Toronto Top of thread Archive
Posted by: Barbara
02/21/2004, 08:07:36


Wow I learn something everyday on this board. I never heard of taking zinc before and after injections. When you say take extra zinc. How many mgs are you talking about. I know you need to careful with zinc quantities so could you give me an idea on the amount. Thank and great info Barbara



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Re: Zinc
Re: Re: Newly diagnosed to June -- Barbara Top of thread Archive
Posted by: June in Toronto
02/22/2004, 06:47:45


Hi Barbara, I take an extra 50 mg of zinc for about 2 weeks before and after botox injections. I've not had any problems with that amount (there are small amounts of zinc in my multi-vitamins and eye capsules as well). I don't know if it helps but my botox injections do last longer than some others (4-6 months) for whatever reason. That piece of information came from a doctor at the one-and-only BEBRF conference I've attended, and it stood out as most doctors do not recommend vitamins and herbs at all (not enough scientific evidence). I haven't seen any written information about this but I've used the zinc routine for 8 years now. Hope this helps.

June in Toronto, Canada




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Re: Zinc
Re: Re: Zinc -- June in Toronto Top of thread Archive
Posted by: Barbara
02/22/2004, 07:35:35


Thank you so much for your response. I will most definity try that and I do appreciate your response. Went to only one conference two years go and am looking forward to attending the one this year if I can afford the airfare. Now I will be able to pit soon faces to llthese names. warmly Barbara



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Re: Zinc
Re: Re: Zinc -- Barbara Top of thread Archive
Posted by: Ann Doyle
02/22/2004, 16:32:59


Thanks for the Zinc info. I never heard of it. Botox only lasts me for 6 weeks. I will certainly give it a try. Ann Doyle



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Re: Zinc
Re: Re: Zinc -- June in Toronto Top of thread Archive
Posted by: Karen
02/22/2004, 18:13:40


Thanks, Barb. I'm going to give the Zinc a try next time.

So far, no change in the eyes after the Botox on Friday. i know, I know, I have to be patient, but it's sooooooooo hard.

My oldest son took me to a movie today and it was so hard to keep the eyes open. I suppose it was the dark theatre and the movie screen with the ever changing scenes and lighting differences. If I'm not even going to be able to enjoy a Television program or movie again, I am not too pelased. Sunglasses just don't cut it in the theatre and didn't seem to help one way or the other.

I constantly blinked and blinked and blinked. Eye lubricant drops didn't help much. And I've noticed that the left eye wants to be held shut much of the time---sort of like I'm winking and then it doesn't want to open. The left eye seems more sensitive to the light, etc. Is this a habit I've developed to protect on eye? Is this part of the BEB or is this Dystonia? I'm not understanding Dystonia too well, so if someone could explain it to me, I would appreciate it.

Thanks!

Karen



Modified by Karen at Sun, Feb 22, 2004, 18:14:19

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Re: Zinc
Re: Re: Zinc -- Karen Top of thread Archive
Posted by: June in Toronto
02/23/2004, 06:46:11


Hi Karen, my theory about movie theatres (and other dark venues) is that dark glasses make the darkness darker and, hence, the lights lighter. So I don't wear dark glasses in a dark venue although a visor might help somewhat, and no dark glasses as a passenger in a car at night! I couldn't watch tv or go to a movie theatre for a couple of years after my blephs were diagnosed and I started getting botox injections. Now I can.....I love the movies and go perhaps every week to a matinee. I don't go to any flash-bang action type as that would still hurt my eyes and I often look down when the ads come on, but there are so many I can see. Over the last couple of weeks I saw "Osama" (very sad but made me count my blessings), "Gaz Bar Blues" (French-Canadian that won many awards), "Barbershop 2" (funny), and prior to that "Calendar Girls" the latter being hilarious (from U.K.) - I don't plan on seeing "The Passion of The Christ" as I would not be able to stand all the blood. I can also watch tv as long as the lights around me are in place. After 9 years of not being able to read a book either I have read 3 in the last 3 weeks - all in big print mind you. I am absolutely thrilled about this as I missed so very much not being able to read. So you see things do change with the blephs and when its for the good like I've described its great. Perhaps your left eye is just a weaker eye (mine is also) and that's why its more sensitive to light. Keep asking questions and learning - and hang in there things can and do improve. best wishes

June in Toronto, Canada




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Re: Zinc/movies
Re: Re: Zinc -- June in Toronto Top of thread Archive
Posted by: Ann Doyle
02/23/2004, 11:32:54


Although I used to read the bible, but now listen on tapes, I frequently skip the crucifixtion part so I'm sure not going to want to see it on film. Maybe someday if it is on TV and I can't find anything else and know I can turn it off. Movies bother me. Ann Doyle



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Re: Zinc
Re: Re: Zinc -- Karen Top of thread Archive
Posted by: Ann Doyle
02/23/2004, 11:28:00


One of my eyes has always been 90 % worse than the other. I have Meige syndrome and it is the same side that is so bad. Before my myectomy , when the Botox wore off, I couldn't even force it open. Ann Doyle



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Re: Zinc
Re: Re: Zinc -- June in Toronto Top of thread Archive
Posted by: dottie
02/23/2004, 10:55:12


Thanks June for the tip on the zinc. I marked it on my calendar, I have an appointment in March for botox. May it will work better, and longer. Worth a try.


Modified by dottie at Mon, Feb 23, 2004, 10:55:44

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Re: Zinc
Re: Re: Zinc -- dottie Top of thread Archive
Posted by: Ann Doyle
02/23/2004, 17:39:00


Got my Zinc and started taking it. Hope it works. Ann Doyle



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Re: Zinc
Re: Re: Zinc -- Ann Doyle Top of thread Archive
Posted by: June in Toronto
02/24/2004, 06:12:01


Good luck Ann. I can't say I notice any difference with taking zinc myself - not for or against the use of it. I just know that a doctor said it at the BEBRF conference way back when and I was IMPRESSED as doctors then (and not many do now) talk about taking herbs. I started taking zinc before and after the injections about a year after starting the treatment for beb and being diagnosed. So I can't tell if it helps or not - I just keep taking it. Best wishes

June in Toronto, Canada




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Re: Zinc
Re: Re: Zinc -- June in Toronto Top of thread Archive
Posted by: Raymond Fudge
02/24/2004, 11:52:59


Zinc is one of the vital nutrients for good healthy skin. Skin is deeper than we usually think, three primary layers. It makes sense to me that zinc should help in receiving shots and possibly in how botox interacts in the layers. I have taken zinc supplements long before I knew I had BEB. My Doc, a teaching doc at UAB, has had interns and other docs come in with him and he always tells them how I seem immune to the pain of the shots. I am sure it is because of the zinc, calcium, magnisium, vit E and A supplements I take for my Psorisis (sp), a skin flakey disorder, includes dandruf, etc.



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Re: Zinc -correction
Re: Re: Zinc -- Raymond Fudge Top of thread Archive
Posted by: Raymond Fudge
03/02/2004, 17:03:24


In previous I said I had Psisoris (sp) I should have said Exema. I guess it was one of my "Senior Moments" as my Mother-in-law calls them.



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