Re: New to blepharospasm
Hi Denise,Welcome to our BB. So sorry to hear about your accident and the results of it. I have had BEB for 4 years now and couldn't drive for 2 years. I started with botox a year ago and it has really helped. I won't even try to answer your questions but I will suggest that you check out the BEBRF website, if you haven't already. The link is at the top of this page. Good luck. Dee in OR
Re: New to blepharospasm
Welcome to the BB. Sorry it seems you are one of us, but you are in fine company. You demonstrate that there are numerous causes to this blasted brain disorder. It seems that head trauma can be a trigger and perhaps the cause. For others we don't have one thing we can blame it on as "this is the cause". For most there seem to be many things that add to the possible cause. It is sometimes progressive, but not always. It can level off and go into remission. We all have common threads of cause and symptoms and what works. We also are completely different in some aspects and the degree of symptoms and what works for us. That is why it is so frustrating to have and to treat and to find a cause and a cure. In other words, there is no definite answer to any of your questions. What we do know for sure is that you keep trying to find the doctor, the medication, the right dosage of Botox and the right sites to give it and you never, never give up that you will find something to give you relief. You learn to cope with the worst of it and be thankful for the best of it, because the symptoms change from day to day and sometimes from hour to hour. I've learned more here than anywhere and the BEBRF has some great info. Get signed up for the newsletter if you haven't and they'll send you a packet of info, too. Good luck and God bless.
Re: New to blepharospasm
Hi Denise,Welcome to the BB; it's a good place to come for information and support. We even have a few laughs and tears now and then. Delaine has pretty much answered your questions, and very well I might add. Blepharospasm seems to have its ups and downs, better and worse times, just as many other afflictions. I don't think the answer is in as to whether or not it continually progresses. Sometimes, yes; sometimes, no. My neurologist, who is a MDS, told me that USUALLY if it begins as blepharospasm, the symptoms don't develop into further dystonia. But time will tell on that for each of us. I have been having botox injections every two months for about 1 1/2 years now. They help me enough to be worth continuing, but are no cure. My most annoying symptom is light sensitivity. Dee and Delaine gave you good advice as to contacting the BEBRF for their info packet. It is very helpful. Please come back often and feel free to ask or comment about anything you choose. Sally in North Idano BEB/Meige (no known cause, but my mother had it about thirty years ago, so it can be hereditary)
Re: New to blepharospasm
Sorry to hear you have blepharospasm. And welcome to the Bulletin Board. This has been my support group for over 2 years. I'm 65 & started receiving botox injections every 3 months in Oct '99. The botox helped until last April when it started wearing off quicker. I had surgery a couple of weeks ago by Dr. Anderson and so far am happy with the results. I can keep my eyes open better, but have blurring from all the eye drops I need. That is to get better in a few weeks. I, too, recommend you register with the Blepharospasm folks in Texas & subscribe to the newsletter. Best of luck to you.
Joann in Ark.
Re: New to blepharospasm
Welcome to bb Denise. I am also new to bb but have had beb for about 7 years. I have learned alot from the people here and I hope you take the advice of the others and get in contact with BEBRF (if you haven't already) it is a great group and full of information. Like the others said, everyone is different. It took along time to get my dosage and injection placement right, and it still seems that the results differ each time. Hang in there and I hope you continue to use bb, the people here understand everything we are going through and it is so good to know someone REALLY understands. Good luck, Judy in Ohio
Re: New to blepharospasm
Hi Denise, and welcome to the bb - sorry to hear about your accident and that you now have beb. You are on the right track by seeing a movement disorder neurologist and I hope he/she works with you to find the right amount of botox and the right injection sites for you (both can make a difference). You will find that you will need to use preservative-free drops and night-time cream all the time, as the combination of botox and beb makes the eyes very dry and, if left that way, open to further problems. I, too, am light sensitive, but, if possible, you should not to wear dark sunglasses in your home as the eyes get used to it and will eventually be worse, as stated by a doctor. Perhaps torchierre lighting and soft pink bulbs would help you at home - I know that fluorescent lights in stores are a `killer'! Good luck to you and let us know how you are doing.June in Toronto (beb/meige for approx. 7 years)
Re: New to blepharospasm
That's the first that I heard you should use a night cream. Whereis is in the drug store? Do you need a prescription? Can you give me the name of one? Ann Doyle
Re: Night Cream/Ann
The night cream I use is by Allergan "Lacri Lube" (non preservative) - I buy it over the counter in the pharmacy in Canada. I'm sure its available the same way in the U.S. The cream is a bit messy and leaves a grease around the eyes in the morning, so I use "Lid Care" product to remove it (I believe this is a Canadian product). Others use a baby shampoo to remove the night cream and that certainly is cheaper, but I find it irritating. I cover up the night cream with a soft, washable (every day) cloth and then night blinds - this gives me eyes a really nice closure at the end of a hard beb day! Hope this helps.June in Toronto
Night Eye Moisturizer
Ann,
Just like so much of this, what works for one, doesn't for others. What June described works for some, but not for me. Lacrilube doesn't have enough petrolatum, and with it I still wake up with gritty, dry eyes. I use Moisture Eyes by Baush and Lomb, or a "no-name" brand that is cheaper but contains a comparable amount of petrolatum. This is too much goo for many people, but I seem to need it. The other difference is that soft, absorbable cloths don't work for me because they seem to absorb the stuff that I put in my eyes and I wake up with dry eyes. I use sleep masks that are made of a non-absorbent material, so it won't wick away the moisturizer from my eyes. Again, this is just a case of "different strokes for different folks" and you may have to experiment some to see what works for you. Virginia in AL, adding my $.02 worth.
Re: Night Eye Moisturizer
Thank you ladies, I saw a slick hot pink sleep mask at the mall at one of those earring places for teens ( I was there with my grandchildren). Grandchildren give you the best excuse for finding the funkiest stuff. Ann Doyle
Re: Night Mask
Just make sure whatever you buy to cover your eyes at night (sleep mask, etc.) that you wash it EVERY DAY or you'll end up (possibly) with blepharitis which is not nice!June in Toronto (beb/meige)
Re: Night Mask
I'm glad you mentioned that June. What type of store carries the type that can be washed every day or do you have a friend make one.? Notice, I'm not the housewifey type with the cooking and sewing. Drug store? Convelescent store? I was serious about the hot pink satin--even had fluffy feathers. Please keep an eye on me if you have one left. Never did have much common sense. Ann Doyle
Re: Night Mask
I wear a soft washable cloth under my masks, Ann - I have several so have a fresh one each night (you could cut cheap washclothes in half for instance). I also have a lot of eye masks also, as I've collected them over the years (from airlines, stores when I see them cheap, etc., so change them a lot as well. I've had blepharitis (infection) and on top of beb, its not much fun. I believe that keeping the eyes as clean as possible helps me a lot. I think the feathers in your hot pink satin would get very messy from the night cream as the masks move around a bit (you'd look at bit like a plucked chicken maybe:-)!!!June in Toronto (beb/meige)
Re: Night Mask
June, I guess I'll just have to pluck the feathers. Ann
Re: Night Mask
Ann ... Just so you don't get tarred and feathered and run out of town!Sally in North Idaho
Re: Night Eye Moisturizer/ann
that's sometimes true, ann !
--modified by kathy at Tue, Feb 05, 2002, 06:54:18
Re: Night Eye Moisturizer
i finally got the HydroEye nutritional supplement ordered. they wanted to know how i heard about it and i said on my support group. i am hoping this might alleviate the need for the ointment part and will let you all know. i think i will have to use the eyedrops anyway.the ointments make me blind and since i frequently wake up in the middle of the night, i would prefer not to have to deal with the mess of removing it.
Re: New to blepharospasm
Hi Denise and welcome to the bulletin board. Sorry to hear of your accident and your resulting problems. Sounds like you have had quite a time of it. I'm very glad to hear that you will be seeing a neurologist specializing in movement disorders. It is very important that you get a correct diagnosis.
You need to know if you have Blepharospasm or Hemifacial spasm. Sometimes it is hard to make an accurate diagnose and only someone very knowledgeable about the two disorders would be able to do so. Usually HFS effects only one side of your face but the other side often looks like it is also having a problem and with a neck injury you could actually even have Hemifacial Spasm that effects both sides of your face. It would have to be triggered by trauma or damage to the offending nerve on both sides of your neck, though. It is unlikely but can happen.
Your neck injury or facial nerve injury also could have resulted in you having Blepharospasm. Both disorders are known to wax and wan. First and foremost you do need to get a proper diagnosis. Hemifacial spasm is surgically correctable and can be cured whereas Blepharospasm is surgically treatable but is not a cure.Most people with Blepharospasm will plateau at some point and then further progression is unlikely. This usually happens within the first 5 years. With your BEB or HFS possibly being caused by an accident, your prognosis may differ. I doubt if anyone will be able to give you a hard and fast answer on that one. I know of one other person whose Blepharospasm was the result of a cervical or neck injury from an automobile accident. Her name is Susan Blizman and she is the BEBRF New England State Coordinator. She has spoken at the last two Blepharospasm conferences. I couldn't find an email address for her but her phone number is in some of the BEBRF Newsletters and also in the "Main Pages" at the top of this bulletin board page under support groups for Connecticut. You could also contact the BEBRF for information as to how to contact her. I'm sure that they would get you in touch with her. I'm sure that she would be able to give you some first hand insight into this as she has been dealing with secondary Blepharospasm since her auto accident in 1994. You can contact the BEBRF at: Benign Essential Research Foundation
P.O. Box 12468
Beaumont, TX
USA 77726-2468
Tel: (409) 832-0788
Fax: (409) 832-0890
E-mail: bebrf@ih2000.net Best of luck to you and let us know what we can do to help. Shirley in Arkansas with BEB/Apraxia
Re: More questions on coping
Thank you all for the information. It's all very overwhelming. I was truly hoping that there was another way to treat this, aside from Botox, but it seems that Botox is the treatment of choice. This leds me to other questions: How do you all deal with the side effects of Botox?
I cried for days over how my face looked.
I only went out for Dr.'s appts.
The light sensitivity got much worse.
The shots increased the pain I have in the back of my neck. (This may be due to my chronic pain condition - I don't know.)
And what about work? I have used up all my STD and am applying fot LTD. I've already come to the conclusion that being in a customer service call center isn't the best place for me (lights and computers) But now what? Do any of you work?
One other question, do any of you get ringing in your ears? I get ringing that can last for days.
Thanks again -
Denise
Re: More questions on coping
Hi Denise, I worked as a secratary in an insurance office and dealt with people and computers also. I quit my job while we were still trying to find out what was wrong with me. I could no longer drive to work and could no longer handle dealing with the people. After being diagnosed and realizing that the botox was not going to be a cure, and that sometimes the side affects were just as bad, I decided to apply for disability and was approved immediately thanks to my Doctor who wrote a letter for me and also talked to people in Columbus. All of your questions and concerns remind me of that awful first year when I didn't understand any of what was going on. Hang in there. Judy in Ohio
Re: More questions on coping
Hi Denise - welcome to the BB. You've come to a good place. We all understand what you are going through and feeling. I am a 62 year old who was diagnosed with beb/meige in 1996. No one in my family has had anything like this. When I was 21 years old, as a passenger, I was in a terrible car accident. I broke the windshield with my head and hit the dashboard with the right side of my face. I was knocked unconscious for awhile. I go to a movement disorder specialist who says he thinks the accident was the cause of this and symptions didn't show up until later on. I worked as a word processing specialist for the state, working on computers, proofreading, dealing with the public and etc. I did manage to get out on an early retirement as I was lucky enough to have my years in (25). I also applied for my disability and got it. I eventually had surgery on my eyes and go in for botox injections. I was going in every 3 months, but find that I seem to be better now. We'll see how long I can go before I need to go in again.So, there will be light at the end of the tunnel denise. I know when I first developed systems of BEB/meige, I was devistated and really wanted to die. I know how you feel, but hang in there. I promise you, it will get better. I didn't want to go around anyone, but soon learned I had a lot of supportive friends who accept me the way I am. I found that if I explained to people what was going on, it made me feel more comfortable as well as them. This is a great place to come for support Denise. When you feel down, just come to the BB and we'll be here to listen. Carol Brown, Naselle, WA, where the snow is gone and the sun is shining today, hip hip hooray.
Re: More questions on coping
Denise,
I'm sorry you are having to deal with this. I have beb/meige and was diagnosed in 1996 just before my 27th birthday. I was a CPA and managed to continue working for a while but as my symptoms progressed had to quit my job. I used up my STD and was approved for LTD. The LTD carrier helped me with social security and I was just approved in Dec for my SSD benefits. I'll be 33 on Sat. My daughters are 6 and almost 4. I found that driving to and from work and using a computer made my spasms unbearable and made my botox not work at all. I now receive botox every 8 weeks, although it only really helps for about 3-4. I don't usually have any side effects from my botox but I know alot of people do. I also take small doses of klonopin, more for the meige. I see a muscular therapist every month to help with my neck and shoulder pain. I'm like you - I'm not sure if it is related to neck problems from a car accident 16 years ago or related to the beb. Please know that you are not alone in this. Continue to find support where ever you can. I just began a local support group here in Dallas and will be holding a large meeting next month. Check with the foundation and see if there is an active support group in your area.Kelly in Dallas
Re: More questions on coping
Hi Denise, as others have posted "hang in there" - the more you learn about this disease, the more you get your doctor to work with you as to the correct amount of botox units and injections sights FOR YOU, the better it will be. I get quite a lot of side effects from the botox - but, on the other hand, the injections last longer for me (about 4-5 months). The side effects, lasting 4-6 weeks, consist of: bruising (don't use blood thinners, like aspirin for instance, a couple of weeks before the injections), burning pain (like barbed wire keeping my eyes open), non-closure of eyes at night (use the night-time cream I suggested and cover with washable eye blinds), sinus swelling (I get my next set of injections this Wednesday and plan on asking the doctor if he injects close to the sinus area thereby causing this), eye headaches, and more. Sensitivity of light seems to be a problem for most of us, with some exceptions I guess - I take a herb, Bilberry in a tincuture format, to help with this - others have found it doesn't work for them. I also wear brimmed hats winter and summer and wrap-around sun glasses (sometimes 2 pairs in the bright summer sun), but have managed not to wear sunglasses at home since I had a window film placed on the windows and use torchierre lighting.Once the doctor and you `get it right' I hope you get relief from the injections and less side effects. Good luck. June in Toronto (beb/meige)
Re: More questions on coping
Denise, I'm 50 but I try not to act my age. I had to give up work as I couldn't in any way work as an RN with this condition. I couldn't think of anything that I would be able to do consistently. In some ways I miss my job but in other ways, I don't. I applied for and receive social security disability. It really just depends on the severity of your symptoms and if any of the treatment options work for you as to whether you will be able to continue working or not. You will be the only one that can answer that.I have never had the ringing in the ears. It may well be due to your accident. As far as side-effects from botox-I really don't have any right now. They don't cause an excessive dry eye problem for me and I've been able to find doctors that can do the injections without giving me a ptosis(or droopy lid). I have had botox to make my upper lip droopy when given in the wrong area. That is quite depressing and functionally makes it difficult to smile or eat. The botox does not make me more light sensitive. Here again, everyone is a little different. Botox is the treatment of choice for BEB but there are medications that you can try that sometimes help and many have tried various alternative treatments with varying degrees of success. I think that we've all done our share of crying. I certainly have. I have my good days and my bad days and just try to keep things in perspective. I initially couldn't laugh or find anything funny about any of this but with time my sense of humor has won out. I'm not saying that there is anything humorous about the disorder itself but just that I can laugh about things now when I couldn't before. Some days, it is still overwhelming and for me it has been about 3 years now. Hang in there and talk to us. We do understand. Be sure and let us know how that doctor appointment goes with the movement disorder specialist. Shirley in Arkansas with BEB/Apraxia
Re: New to blepharospasm
Hi, Denise, and welcome to our fellowship of uncomfortable people! You didn't say where you live, but in some locales there are BEB support group that can be very helpful.I'm sorry you share our troubles now; I wouldn't wish them on anyone. I have BEB, not HFS, but I've been through most of the problems too. Like most folks here, I can only guess where the BEB comes from, but two real possibilities are head trauma (at age 5) and a genetic tendency toward other dystonias -- my Mother had Parkinson's disease. I have had BEB since around 1960 but it was misdiagnosed -- twice -- and I got it diagnosed in 1990, after stumbling around the condition, working full time, for 30 years. After that time, I am finding that the severity of my condition is improving and that I only need the shots at about 8 month intervals; but I do not expect a remission. I can reassure you on some points. >... it seems that Botox is the treatment of choice. <
So far, yes, but BEBRF-instigated research is ongoing. >I cried for days over how my face looked. I only went out for Dr.'s appts.<
For goodness' sake, don't let this condition lock you in your house. Get out and smell the roses. Who cares what you look like? >The light sensitivity got much worse. <
This appears to be due to the duration of spastic blinks (2-5 seconds) as compared to normal blinks (1/20 sec.). When the eyes open after a spastic blink, the irises of the eyes are already fully open and the eyes get bathed in bright light that normal people don't experience because the irises don't get opened by a normal blink. Sunglasses and sun visors can help. >One other question, do any of you get ringing in your ears? I get ringing that can last for days. <
The condition is called Tinnitus and is caused by damage to the inner ear, probably from the accident. Ask an Otolaryngitist (eye, ear, nose& throat) for help. Good luck! --- Lynn
Re: New to blepharospasm
DeniseI developed this condition at 45 or at least thats when it really hit me. I moved from Minneapolis where it is humid to Calgary Alberta where it is extremely dry. It took about 18 months to get a proper diagnosis. My first injections of botox was hell. The doctor gave me too much and after about 10 days my face looked like it fell!. I had my sister-in-laws wedding the very day that I noticed it. I was getting my makeup on and WHAM. I was hysterical and could only last a little while at the wedding. I even hate looking at the pictures from then.
Five years have past and I had surgery 2 years ago April. I still have botox but not as often. The surgery is not a cure but a improvement. Like everyone else has said, EVERYONE IS DIFFERENT and what works for one does not necessarily mean it will work ffor you.
! This board is the biggest support group you will ever find. Come here whenever you need a shoulder. They throw the best Cyber pity parties
around, complete with chocolate. You will be amazed at the work that these people do to have a really good party Just remember this is not life threatening but life changing. You will have good days again!!!!!! Catherine in Calgary
Re: New to blepharospasm/catherine
catherine, i lived in Minneapolis for years, where did you live there? did you notice any inprovement or worsening of the beb from a climate change??
Re: New to blepharospasm/catherine
KathyI did not develop this condition until I moved to Calgary. It might have been in the making for years. That is what I have been told. I do remember my Mom saying "what are you squinting for". I had not other symptons so if this is made worse by stress than I can definately say that the move was the cause. I loved my life and friends in Minneapolis and to start all over again was very depressing for me.
I have been in Calgary almost 6 years and still miss Eden Prairie Mn.
Calgary has an extremely dry climate and we get chinook winds that are a killer for me. I find I am much better when we go to places like Mexico and even our cottage in Ontario where it is humid. We will definately move back there when my husband retires in about 2 1/2 years (I could actually count the days!
Catherine
Re: New to blepharospasm/catherine
catherine, i spent quite a few of my "wonder years" in edina, minn.
that wedding experience you described sounds really awful!
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