Re: BEB |
Hello Mike and welcome to the bb. Sorry to hear you have this disease but you've come to the right place to `talk' to people who also have it. If you haven't already, you should check out the BEBRF link below, or e-mail them at; firstname.lastname@example.org ; or phone: 409-832-0788 to get more information on the subject.
|Re : BEB --- mike woodhouse|
|Posted by June in Toronto ® (June Floyd,June in Toronto), Nov 30,2001,10:10
||Top of Thread
I've had beb/meige for about 7 years now and your story of it taking so long to be diagnosed seems to be `normal' - its a rare disease and many doctors know nothing about it unfortunately. It also seems to take a number of sets of botox injections before the right injection sites, the right amount of botox is reached for the best effect possible. I get 90 units of botox - how many units do you get? There has been discussion, by others, on this bb, about breathing problems - I'm sure they will answer your post. As far as the question "will it progress", well nobody can answer that - in some it does, in a lot of people it doesn't - only time will tell. Your best bet is just to educate yourself, your doctor (is he/she a movement disorder specialist?), handle stress as best you can (stress aggrevates any disease), etc.
I'll let others welcome you to the bb, Mike - post anytime with your questions, we will always do our best to answer them. Cheers
June in Toronto (beb/meige) where its another dull, rainy day -- I love it!!
Related link: http://www.blepharospasm.org/
Hi, Mike. Sorry to hear you have this @#$% condition, but glad you came here for advice and comfort.
>Will I ever get to 100% with the Botox treatments or is 60-70% the best I can expect. <
Not sure what your expectations are, but BEB is chronic - in all likelihood you will have it for the rest of your life. I have had it for 40 years so far. (I'm 71.) When the Botox is working, my vision is pretty much normal, but it does get pretty bad near the end of my Botox cycle.
>Has breathing such as shortness of breath got anything to do with this. My Dr. says no. It comes and goes. Like the eyes, when I get busy with something it's normal. <
I believe this is the effect of stress, which you need to get under control by whatever means works. Stress does not cause BEB, but it sure aggravates it. Keep busy with things and people you love!
>Can I expect this condition to progress to the rest of my face as the years pass.<
Not likely. Meige syndrome, the full-face form of dystonia, typically develops all together AFAIK.
>Thought retirement was going to be fishing and cold Margaritas. Thank You Mike <
Actually, I recommend MORE fishing, not less, as long as it doesn't make you more stressful for some reason (Are you a competitive fisherman?) but lay off the Margaritas a bit: a few of them, plus your vision problems, and you may end up in the Bay somewhere...
>Can I expect this condition to progress to the rest of my face as the years pass.<
Not likely. Meige syndrome, the full-face form of dystonia, typically develops all together AFAIK.
This wasn't my experience. In the beginning I only had BEB. After 6 months or so, I started noticing a little movement around my nose. Six more months and the breathing problems started. Then came the grimacing (neck and chin tightening and pulling). The jaw thing has been more recent. It definitely didn't come on all at once.
If the breathing thing is brought on by stress, then I am finding it stressful to walk, talk, and eat. I guess I'll just have to put up with a little stress in my life.
Virginia in AL (Lynn is one of the guys I referred to in the prior post.)
what is AFAIK? Annn Doyle
Ann, it is the shortened version of "as far as I know". AFAIK
Welcome to the board. It's not unusual for it to take a while to get diagnosed. I was treated for dry eyes first and later was lucky to be "diagnosed" by a stranger in a restaurant. There are no neurologists in my town who treat BEB, so I have had to travel to get treatment. The results from botox vary, as you have experienced. I have heard (or read) that many people experience their best results with their first set of injections because their eyes are at their worst then. That isn't always the case, though, because the most effective injections sites and dosages vary somewhat from patient to patient and must be tailored to the individual. Also, your symptoms may change, so your treatment may need to be altered from time to time. We have also discovered that not all botox is created equal. Some lots seem to be more effective than others. Good communication with your doctor is essential. Let him/her know what results you are getting.
The shortness of breath could indeed be related to the BEB. I have had two neurologists tell me yes. They just don't seem to know what to do about it. I wish I could give you a better answer on this one and will if I ever find one.
Progression of the disorder is as individualized as symptoms and treatment. It may - it may not. Only time will tell. By the way, you are in the minority with this disorder - women get it more often than men, but we do have other men on the board. Good luck with your treatment.
Virginia in AL, where it is starting to cool off - I was enjoying the warm weather.
Hi Mike and welcome to the board. I'm sorry you are facing this disease and the uncertainties that go with it. I am a 32 year old mother of 2 and have had beb for 6 years. I also have meige but the meige came later. I have gotten progressively worse over the last 6 years but not everyone does. Eliminating the stress of my job as a CPA helped but was not a cure. I receive 100 units of botox every 8 weeks for beb and 55 units of botox in my jaw every 12 weeks for meige. I am a marginal responder - even with botox driving is very difficult, I have to limit my time on the computer, and I only read to my daughters (6 and 3). I also take .5mg of klonopin each day which seems to help with the meige. I do experience shortness of breath occassionally (unrelated to stress) and also have a spasm in my throat which causes me to choke from time to time. I hope you are able to get the answers and support that you need here - you have certainly come to the right place. Do the best you can to continue to enjoy your retirement - we have been to Destin the last 2 years on vacation and love it!
Kelly in Dallas
Mike, you have had some excellent replies to your post so take them to
heart. It has taken most of us much time and networking to get a handle on this disorder and all its different aspects. I have BEB and meige. Fortunately for me, my eyes do not yet do the total shutdown
that many of us have and the botox in my eye muscles does its job
for about 75 days. I also have breathing difficulties and like Virginia, have determined it is part of the meige or spasms in the lower face and throat. I will repeat this is a very individualized disorder and no two cases are alike. There are variables with regard
to botox injections, where, how many and what doctor does the injecting.
Our bodies respond differently as well so it's lots of trial and error.
For me, the information on this BB has been invaluable especially since
most of the medical community is not as well versed about this disorder as we would all prefer.
Take care, good luck and keep coming back.....it will help!!!
Joanne M. San Diego, CA
Welcome to the BB; it's a good place to come for ruminations, humor and suggestions.
Most of us have had long, frustrating waits for a diagnosis. As for the success of Botox injections, I have them every eight weeks and never achieve 100%, but it is sufficiently improved to be worth continuing.
Agreed ... BEB does limit retirement options, but don't give up; there are other doors to open that could be fun.
Come back often and share your thoughts.
Sally in North Idaho BEB/Meige ... enjoying a lazy afternoon of watching the snowflakes flurry and the little birds scurry to my old crab apple tree to have a tea party with the remaining apples hanging.
sally, how many units of botox do you get? i get 75 .
Kathy ... I think I am at 100 units now; started at 50.
Sally in North Idaho where if you don't like the weather, wait 10 minutes. We've had snow storm, wind, sleet storm, now slush. Yuck!
well then, then have room to move with my dosage. as for that weather , i lived in it for too long. double Yuck!
Hi Mike and welcome to the bulletin board. By now, you've found that everyone is a little different with this and what many have mentioned already is that what works for one may not work for another. We all have a common thread but vary widely on specific symptoms and what treatments work. There are treatment options and you just have to hunt and find and arm yourself with knowledge.
I'm 50 and have had Blepharospasm with apraxia for close to three years, now. Botox works on me to relieve the tight squeezing but does nothing to open my eyes. I had an upper limited myectomy about 7 months ago. This has helped some but I still require medication and botox. Before my surgery, I was recieving 100 units of botox every 8 weeks. We are still working on dosage and sites since my surgery.
I think that there are people out there that do get good control of their symptoms from botox but I doubt that they are on this bulletin board as they would have no need for it. Many of us on this board never see complete relief of our symptoms. Our definition of a good eye day has changed dramatically for many of us and our criteria for this is much lower than it used to be.
I also have a minimal breathing problem with this-not nearly as severe as others but none the less still there and something that I notice more than it being a problem for me. The sypmtoms can and do come and go or maybe it would be more accurate to say symptoms improve and get worse for a time. Sometimes we can point our finger at a precipatator of a bad eye day and other times there seems to be nothing to blame it on.
I have heard that if symptoms don't progress within the first five years that they are not likely to after that.
I actually had more neck and lower facial involvement before my surgery. That part seems to have disappeared since then. I know that it may return but right now I am blessed with not having that problem.
Botox, itself, can also cause involvement in your lower face as new nerves sprout to replace the ones that the botox has put out of commission for awhile. As the botox wears off, the old nerves will come back to life and start up again with their "toying" with us and the new nerve sprouts will dissappear. So what helps in one area may wreck havoc on another.
Most of us can relate to your being unable to find a knowledgeable physician about BEB. Usually a Neuro-opthalmologist or a Neurologist that is a Movement Disorder Specialist are at least aware of BEB. You do have to hunt around though. You may have to travel a distance to find a good doctor.
I thought retirement was going to be traveling and doing a lot of sight-seeing. I'm unable to drive except in a very limited capacity. I'm pretty sure that I could fish, though.
Again welcome to the bulletin board and ask or comment on whatever you like. That's what keeps the bulletin board going.
Shirley in Arkansas having a not so good eye day.
i maybe could too but i am NOT cutting off the head!
Kathy, just throw the fish back in. It's the fishing "experience" that counts. Of course, I also like to eat fish.
i love to eat fish. i just wouldn't want my appetite to be wrecked with what i had to do to it beforehand. i must not totally appreciate the concept of "sport fishing".
Hi Mike...I just turned 62 this year, and I've had my problems since I was in my early 50's. Like you, I'm relatively new to the board, but I found that everyone is very responsive...and helpful...and sweet...and friendly, so I'm going to stick around for a while, and I hope you do, too. It's great talking to people who share this thing, and very helpful to hear about their experiences. You might also contact the Association to receive their newsletter--it offered some relief to learn about the research, etc.
Think I know how you feel about the difficulty in getting diagnosed. I knocked on doors for over 5 years before I was "accidently" referred to a neural-ophthalmologist who knew all about BEB.....and I'm in NJ where health care is supposedly top-notch. I even had one neurologist tell me that if I didn't like blinking and closing my eyes, then I "should stop doing it"(real professional, huh?). I was almost convinced that the problem was self-initiated, or that I was going insane.
I've been on Botox for about a year, and I get 7 injections around each eye every 3 months. With my first experience I was about 80-90%. After subsequent visits, I had varied successes, because my doctor was experimenting with different locations. One experience was that the left side of my face drooped and I lost my smile for a month or so, but this was the result of our experimenting with sites. On another occasion, the shots were a total bust because of a tremendous amount of stress at home (I'm caregiver for my 94 year old dad). However, the Botox success is otherwise quite consistent, beginning with 80 to 90% effectiveness, then going progressively downhill until I start "bumping into walls" at around 2-1/2 months. I'm at that point now--My next shots are on the 21st of December, and I can't wait. We're still aiming for 100%.
About the progression of BEB...I began with Meige (a dystonia problem that affects my mouth and cheeks)and BEB followed sometime later. When I started with the BEB, I noticed that it became progressively more intense for about a year, then it leveled out. I've been about the same for the last 3 years, and really appreciate the amount of help I'm getting from Botox. My concerns about progression were like yours, but my doctor had little to offer, he said everyone with this problem is different.
About the breathing, I do know that stress exacerbates my problems a great deal, so it might be having some effect on you, as well. Heck, just living with this MISERABLE affliction causes stress, doesn't it? Hey, but the cold margaritas and the fishing should offer some relief!! ...and being in the Keys sounds pretty nice, too!
Hearing about your profession, I believe that we are predisposed, but I also wonder how big a role stress plays in the eruption of BEB and Meige. Being a PO is very, VERY stressful vocation, and as for me, I spent 17 years as Parking Director at a major university (talk about stress!). Anyone else out there retired from stressful jobs or have lived otherwise stressful lives?
Keep your chin up, Mike...and know that you are bigger than this thing, no matter how troublesome it might be to you!
--modified by Rita Molnar at Fri, Nov 30, 2001, 22:03:31
I'm sorry that you have BEB. You will find the best of help and support on this BB. I would not want to do without it. Everyone is great in sharing their experiences and things that help us to deal with BEB on a daily basis, even if it is not cured. I am 56 and have been diagnosed with BEB for 8 years after 2 years of seeking diagnosis. The Botox was real helpful for about two years. Results have not been nearly as good since. I'm not sure if it is the Botox, or if my condition has gotten that much worse. I have noticed definite progression of the BEB/Meige into other areas as well, including the throat and breathing problems. It has been a long time since I have had anything close to a "good" day. I take Klonopin, which does help some with the Meige symptoms, but it has side affects. Your being retired should be a plus for you, and hopefully you will learn the things that trigger your problems and how to avoid them. I cannot drive, ride, walk, watch TV, converse or many other things without bringing on increased squeezing of the eyes and the other problems. But we just need to make changes, even if they are not easy. Keep in touch with the BEBRF and this BB.
Tim in PA where it was in the 60's today, Nov 30th, about 30 degrees above the average for this time of year. And we did get some rain, but need more.
Sorry to hear that you have developed BEB. It really is so unfortunate that we have to develop such a dreaded condition. But like everyone on this site we have all managed to continue on with our lives and live with it and find what works for us.
I take Klonopin 1 mg a day and take vitamins galore. My condition has improved since taking my vitamins. I have not had to get botox injections since Aug. The botox injections do nothing for me. At first it helped me but that was just the first set of shots. I don't think I need to take them at all at this point. My spasms
aren't as bad as they had been a year ago. I have improved and I hope you will too. I do have a problem with my right eye it will close on me it really looks like i'm winking which isn't very good because I think some people think I'm winking at them.
I hope you improve and hope thing will work out with the botox.
Interesting about the vitamins, Priscilla. Nice to hear about a success story, and I wish there were more. I haven't heard too much about one eye being affected more than the other, maybe because I never asked. But that's also one of my problems, and I thought it was unique. About the "wink"....maybe it could work out to our advantage if we aimed it in the right direction?????
Rita my left eye is almost closed to maybe i/4 open and stays that way most days. About 15 days a month and it is the side that developes the headaches. Guess I thought it was only me. The way the doctor talks it is the apraxia that causes the lid to close am I understanding this right?
And I thought I was so different!! It appears I'm not the only one with a problem greater on one side of my face than the other.
Mary, I don't know very much about apraxia, but after I read your post I went over to the BEBRF Blepharospasm page. Have you been there? There's information on that, and also an article on droopy eyelids which might be interesting to you. My understanding after reading the article is that some people with BEB which causes the eyes to close, can ALSO have apraxia which prevents the eyes from opening...
I think I might have some form of apraxia. My lids seem to want to stay closed, even though I'm "telling" them to open. That's one of the reasons I'm so afraid to drive when the Botox is wearing off. My eyes will slam shut and by the time I'm able to get them back open, several seconds go by. Translated into feet, that's some distance to be driving with your eyes closed. I think that's also why I bump into walls. I'm so busy concentrating on trying to open my eyes, I forget that I'm walking, and before I can get them back open, the wall gets in the way.
Anyway, for me, it's 19 days and counting to "Botox Day".... I stopped driving this week. (For the sake of the walls, maybe I should stop walking, as well.) Smiles to everyone..... Rita from "Joisey"
my body has finally "learned" that when my eyes close, to stop walking. if anyone here at my apartment complex has ever seen me walking to the mailbox which is approximately 1/4 block away, they probably wonder what the H... is wrong with that person? this does not happen all the time so it would be even more reason to wonder. every day is different. your sense of humor is great, rita!! i would be very careful driving, especially in "joisey" traffic!
What's the secret to how your body learned to stop walking? That's one of my biggest problems. Man....today I was in Sam's Club (husband drove me) and I ran into a guy so hard I almost knocked him over!! I'm really getting dangerous, and husband, Frank is getting too embarrassed to go shopping with me anymore. I told him he should walk in front of me, but he said, "heck no, I don't want to get hit".
I was watching the news today, and there was a segment on about a new mobile device with 2 wheels that you stand on and steer. It's electrical, and supposed to take the place of walking. It goes very slow, but also fast, at speeds up to 17 miles an hour. (It's named "Ginger"....have you seen it?) I was rolling all over the floor laughing. Imagine all the damage I could do on one of those if they let me loose?? However, it might be of some benefit. If I did run into someone, I could spin around and go like h---. No one would ever catch me on foot with me going 17 mph on one of those things.
Yes...The traffic here can be real nasty. But I make sure I stop driving when I get to that point and, (don't laugh)...I keep a roll of scotch tape with me to hold up the lids in case of an emergency.
Had to wonder with all those stops, how long does it take you to get to the mailbox? With the way I expect my eyes to be over the next 3 weeks, if I stopped every time my eyes closed, I'd need to pack a lunch.
Hey...keep smiling!! You could be living in Jersey where mailboxes are considered dangerous....
i actually did live in jersey for awhile, a long time ago.
the walking thing looks like i am playing my own game of "mother may i" or "red light, green light". i am sure it looks truly strange from someone who would be observing me. they would probably report me for suspicious behavior in these times, luckily i have a brochure from the foundation i could give them. i think my body "learned " this from all the foot injuries and stubbed toes that i have incurred and ensuing PAIN! that has followed. i have also had broken fingernails from feeling my way too fast along the walls of my apartment. obviously my brain remembers this and has told me to slow down. your husband's comment was quite funny, luckily you have someone who also has a sense of humor to help you deal with this.
yes , i did see that new segway scooter. quite interesting . reminds me of one of the "back to the future" movies . actually i think they had power skateboards in that one.it solves the problem of getting from one place to another, but how would you carry stuff? on your back?? could it handle and balance a heavy backpack as well? i bet students would like this one.
why are the mailboxes in joisey dangerous? because of the anthrax problem? or your driving!?
What I've noticed is the right side of my head has always felt differentsince getting blepharospasm. I always tell my doctor but they never think anything of it. I do get sinus headaches and notice it is always the right side which really hurts. I take sudafed for the allergies and
that helps the headaches as well as the eye. Pretty weird. My neurologist said my xrays showed trauma to the right side of my head.
I have an idea about the trauma but I really think I got this disease combination of so much stress and nervous breakdown and also never taking care of my body.
We have some things very much in common.
We both have sinus problems and headaches (pain mostly in the right side) since getting blepharospasm....Claritin (prescribed) helps my sinuses and headaches, and eases the eye problem somewhat. (I also take Excedrin Migraine, and it works well on my headaches.)
I was in an automobile accident just before these problems started, and the right side of my head hit the windshield. My right eye has always been significantly more troublesome than my left. (Maybe trauma????)
My life has been loaded with stress...still is. I, too, ignored my health and physical well-being...and I suffered a nervous breakdown in my mid-40's.
I've always been convinced that stress was at the root of my blepharospasm and meige problems...only I think that we're predisposed to the problems (in the genes), and stress is what causes it to erupt in the first place. When I'm under a lot of stress, my blepharospasm and meige symptoms become much worst.
What kind of vitamins are you taking?
The vitamins I take are b6,b12,magnesium with calcium and calcium aspartate....these are the first set of vitamins I started taking a year ago and I could feel the difference.
The woman who I go to for vitamins added b-complex,vitamin a,vitamin c
and something called milk thistle which is to cleanse my liver. She cringes at the thought of me taking Klonopin,but that medication is not easy to get off of. She wants me to try. I will eventually.
my stress is not so bad anymore....What relief..
But I really believe stress had a lot to do with my condition. Does anyone else on this site think the same thing.
Stress? Absolutely! I may have been predisposed to get BEB, having been a "squinter", and very sensitive to sunlight, but a period of heavy stress, I am convinced, led directly to the BEB. Mary
The same holds true for me, except I wasn't a squinter or light sensitive.
Re: BEB Vitamin B6
I take a Vitamin B Complex during periods of stress and definitely know that it makes me feel better and more calm.
Also - there was a positive report on wemove.org about the effects of Vitamin B6 on those with tardive. Here is the link for the details. They also have a great email service that tells you about all of the research that is going on to try to help those with dystonia. It is heartening to know there are people who get up in the morning and go to work to try to solve the mysteries of this lousy disease.
Kerry in CT where it was 70 and sunny yesterday, but December arrived today.... the keys sound pretty good about now.
Related link: http://www.wemove.org/emove/article.asp?ID=395
Re: BEB Vitamin B6
priscilla, shannasy, who sometimes posts on the bb and i are both taking magnesium supplements as we both did some research on this (all the things that deplete it from the body). my magnesium is the aspartate form. what is the brand of the calcium asparate you are taking and where did you get it? so far i have noticed an increase in energy , but not my eyes better yet.
stress, of course, makes everything worse. i take a B vitamin complex on a regular basis which really calms my nervous system, stress management was one of the most valuble topics covered at the conference as far as how how that is one the things we can supposedly control in our lives , or try to.
I take calcium-magnesium complex 500mg/300mg and magnesium potassium aspartate. Sorry I think I gave you some wrong info. I read on a website that calcium and magnesium would need to be taken together. I go to a vitamin store and the woman really knows pretty much about her vitamins. The brand I take is called country life and these can be found at whole foods store.
thanks! i think i read somewhere that if you are magnesium deficient it would be better to take the mag alone and then slowly add the calcium. anyway the vitamins are obviuosly very much helping you. that's wonderful.
rita, my left eye is most of the time worse than the right eye; first one to get bad , last one to get better. the squeezing i had yesterday was only in my left eye. it's an odd sensation.
geez! you don't have to get the botox at all?? what vitamin regimen do you follow? how were your eyes worse before these vitamins, can you try and describe this?