Re: Frustration |
Shirley ... I think the biggest frustration for me came soon after the actual diagnosis (following a couple of years of extreme frustration just trying to get a medical person to listen to me and hear what I was saying and steer me to a diagnosis).
The early frustration is almost overwhelming when one realizes the life changes that are necessary. I don't mean just giving in to "being sickly" and deciding that is what life is all about from now on. I mean, the limitations that are forced upon us for safety's sake if nothing else; i.e., driving, walking alone in parking lots of malls, continuing to work at a demanding job. These are all major upheavals that have to be dealt with and often cause a loss of income and/or health care insurance and/or support from family and associates.
I think that the very first thing that has to be done is to deal with those things as thoroughly as we possibly can and then make up our minds to still have a life. There are definitely stages of grief in accepting this and we need to walk through each stage and come out into the light again.
The most helpful thing for me after dealing with the above was finding this BB and talking with others who had been through or were going through the same things, or similar. Just knowing that you are not alone in figuring this blepharospasm stuff out is a very powerful tool for survival.
I'm sorry ... I didn't intend to write a book!
Sally in North Idaho where I've had the window open letting in fresh spring air, and my fingers are freezing!
I'm in total agreement with you and you have brought up some important aspects of dealing with this.
I think that my frustration lessened when I felt like I had a handle on things and was taking charge of my own care and the direction I had to go with it. It was a matter of getting away from local doctors that didn't know as much about the disorder as I did. As my knowledge of the disorder increased, I felt empowered to seek the help that I needed and went where I had to go to get it. Things are not perfect and sometimes they are not even ok, but I do have a plan.
It is an on-going struggle and can still be extremely frustrating. I found myself unable to prepare a meal a couple of days ago and wound up going to my room and crying. Some days, I can just say "everybody fend for yourself or go get some takeout". Others times, I just can't deal with not being able to do the things that I used to be able to do. It is self-inflicted, though. Maybe, I just wanted or needed a good cry.
Shirley in AR. where I can't open the windows, even though it was 70 degrees today, because of my hubbies allergy problems. We go from the heater to the air-conditioner.
After going through the different stages that were mentioned above,
my frustrations were also lessened when I felt I was in charge and I was not going to let BEB in charge of me. Once I started having hope,
emotionally I started feeling better.
What gave me hope? My chiro told me to read a book by Depak Chopra, Ageless Body/Timeless Mind. (audio book)
He talks about how the body wants to heal itself ie.
our bones, stomach lining,and so on. How our brain does not know if we are actually experiencing an event or just remembering that event.
Your brain will give off chemicals according to what your brain is
perceiving. Remember happy = happy chemicals, remember sad = sad chemicals. I wanted my brain to remind my eyes and face how to react
before BEB. I focused on doing things that I was able to do with open eyes. And I marked my progress. I could crotchet for hours,
I could clean my house for hours, I could work in the garden for hours.
I learned how to balance my mind and body.
I took the falling off a horse approach, if I knew a store had lighting
that bothered me, week after week I would go back in that store. I should say stores and the mall. I would do these things on the spur of the moment on purpose so I wouldn't have time to think about it.
It didn't work overnite and sometimes didn't work at all. But I came out
thinking, it's ok. it's still better than sitting in the house crying
and paralyzed by thinking I can't go out, I can't go to a store.
I listen to my body and know my limits.
My faith in my God gives me peace, He's the one that's really in charge.
Mindy in NY wondering how does Shirley find this list of people???
Re: Finding list of people and their description
Mindy, You must click on author profile within a given post- possibly a new poster, and the information as to name and where he or she is from and a brief description that they entered will show up. Some people don't put anything in except a first name, etc. Many times they will put a concern down. When you are in this author profile, if you look at the very top of the page, it has a place that you can click on to get peoples names that have registered during the past week. Many of these people never post. You can also change the number in that box that says "7" and go back as far as you like.
I must say that when I saw Don Peaslee's description as "old", I felt like I needed to change his profile as "young at heart, kind and compassionate gentlemen who wants to help others but is a bit shy."
Shirley in AR.
When I was first diagnosed with tardive dystonia, I went into a major depression. I just wanted to die! I didn't eat and I lost 35 lbs. in just a few months. I wanted to KILL the doctor who gave me the meds that caused it, so I wrote her hate letters and hate poems instead and dreamed about setting her house on fire or plucking her eyebrows till she didn't have any left!! Then the blephs hit me and I was devastated! The two hardest things were not being able to drive and not being able to go hiking in the woods with my dog. I couldn't even walk the dog. After I got over the initial shock and disbelief, I decided that I was only going to have dystonia for three years and that it would work its way up my body and out the top of my head back into the Universe. And that's sort of what happened when I had the DBS Implant surgery last year! But it didn't help the blephs and I did not want botox. So I called State Rehab and asked them what they had to offer me. After a lot of singing and dancing, I convinced them to pay for me to get my PsyD via long distance learning. I felt like I had taken charge again. And then I decided to get botox for the blephs and I could drive again. So between the DBS surgery and the botox, sometimes I feel almost normal and have to remind myself that I still have dystonia and the blephs, and chances are I always will, so I just have to adjust and get used to it. But I still have days when suicide looks like a good alternative. I know we're not supposed to talk about the "S" word, but I am being honest here. How do I cope with it? I have a great sense of humor (sick and cynical) but I can laugh at myself most of the time and I don't take life as seriously as I did before. There really are no big deals anymore. And if I hadn't found this bulletin board and the dystonia BB, I probably would be a statistic by now!
Dee on OR where we are finally finished digging the crawl space under our house!!
--modified by Dee in OR at Thu, Mar 22, 2001, 22:34:48
Hi Shirley...I'm THAT person "consumed"....but your words and the other postings gave me a little daylight. Maybe it's just knowing that there ARE actually OTHER people with this thing that is helpful.
I just turned 62 last month...and in all my years, I don't believe I've ever seen anyone else with blepharospasm and meige, or maybe I just didn't notice. Whenever I would mention my symptoms to an MD or to an Opthamologist, or anyone else who would listen to me, they'd look at me quizzically and tell me that nothing looked wrong with me. I've had this problem for at least 10 years now, but I only made half-hearted attempts to do something about it, because the reaction of others convinced me that I was either imagining the whole thing, or that it was something I could stop if I really wanted to. (When I described my symptoms to a neurologist a few years ago, and I told him that I couldn't stand it anymore he said, "so why don't you stop it?"
Last year I began to actually bump into walls because my eyes would close while I was walking. When I found my eyes slamming shut while I was driving, I had to stop driving. In stores, I was hitting people with my carriage. I must have been something to see. That's when I really became desperate, and mentioned it again to my doctor. He once again referred me to an opthalmologist, who then referred me to a neurologist he knew of, who worked with this kind of problem. I finally found help...someone finally gave a name to my problem, and that was a big thing. It was nice to learn that I was "normally abnormal". He spent about 45 minutes with me...it took that long for me to begin exhibiting my squinting and blinking, etc. If he hadn't spent that much time with me, he might have sent me away like all the others had.
I've been getting Botox injections every 3 months for a little over a year now, and they are helping at lot. I am also on Paxil and just added Buspar to my meds to help me with anxiety. (I wonder whether the anxiety is causing the blepharospasm or is it the other way around????) I'm really not used to this kind of thing. I've been successful with most everything I've ever tried in my life, but I can't seem to get control over this thing, and it's driving me up a wall. Maybe I need only to accept what's happening, and find ways to work with it. I just don't know.
Listen, VERY SINCERELY, thanks so much for picking up on my frustration message and reacting to it. I'm starting to think that communicating with others who have this problem can help me, and if I hadn't read your message, I might never have begun reaching out on my own.
Re: Driving you up a wall ...
Your message is very understandable. I've climbed that same wall and know the chinks in it well. Frustration indeed, the name of the game!
I'm signing in with my own name today, instead of JB-Moderator, because I've been a BEB/Dystonia patient the same as each of you, for the last 4 years and experience all of the problems in dealing with life that you do. I was always a mountain mover that got things done. For over 20 years I went to work as most all of us Baby Boomer women have, brought home the bacon and fried it up in a pan. Raised kids, met work deadlines, cleaned house, prepared meals and was the best that I could be.
A few months before my 50th. birthday I received an early present. BEB came springing out of the jungle and took over my life. Many things I took for granted changed. The job along with the paycheck it provided went away, taking with it the accustomed freedom. Disibility, they called it. My Father would have said in years gone past that I was now 'on the dole'.
There is hope, there IS life after BEB, however it is not going to be handed to you on a silver platter. You must search it out. Look for those things that you can do, you will be surprised at what might appear. When your head is in the quagmire and you don't know what to do, reach out your hand and do what falls into it to do. Work from there.
--modified by Judy Blackman at Fri, Mar 23, 2001, 09:39:06
Hi Rita ...
I can relate to nearly everything in your posting. I am 66 and have been diagnosed for a little over two years. One thread that keeps coming through in so many stories is the trek from one ophthalmologist to another and another for months, years ... all ending up in no diagnosis.
It seems to me that ophth med students should be trained in the symptoms and diagnosis of this disease as patients are nearly always referred initially to one or more ophthalmologists simply because the obvious symptoms are with the eyes. In reality, it usually takes a neurologist (and sometimes more than one of them) to recognize what is actually going on.
We all have to face up to the cards we've been dealt and make a future for ourselves. This is really difficult to do, particularly when we have spent most of our lives being the caregiver and helpful person to others. I was always driving someone else or helping them in some way. Now ... there are many times when I have to ask for help. It is not always available, so I just have to accept and do what I can.
My faith in God and the knowledge that He does have a purpose and a plan for my life helps tremendously. But I won't pretend that there aren't many days of tears and frustrations for abilities I no longer have. I have a deep empathy for younger persons who are raising children while dealing with the effects of this disease. They deserve a lot of encouragement from the rest of us.
Take each day, or minute, as it comes, Rita. The one that follows might be easier and happier!
Sally in Idaho where the sun is shining brightly and the sky is a beautiful blue today.
gosh i am sorry you had to wait so long to get diagnosed. that in itself must have worn you down. one of the worst things about BEB is that it affects your eyes and the blindnesses can be terrifying.
getting on this support group really helped me. Also educating my church circle, complete with pamphlets was scary for me but seemed to eliminate al ot of half questions as to exactly what was wrong with me. My Fl41's have helped alot and my most overwhelming problem of pain is much lessened after 4-5 years of dealing with it; so far by the painkiller Clebrex. Learning to pace yourself and rest was just recently learned by me after getting really sick with some virus. apparently i was almost killing myself trying to do everything when i just couldn't do it. hope this helps.
I'm so glad that you posted. Welcome to our little group. So many times, I have looked at all the people that have registered and never see them post. I've seen many "messages" like yours in the description part of the author profile. I just felt like we weren't meeting their needs. Depending on when they look at the bulletin board, we could be discussing anything from dandelions to toffuti ice cream.(Sorry Delaine) We tend to get "off track" at times. It is loads of fun for all of us that are on the bb regularly but probably not much fun for someone new and looking for help.
I sincerely hope that you stay with us and ask questions and let us try to help you. I read your post this morning and started crying. I thank you for allowing me to pull you in. It made me feel good and worthwhile. I'm so proud of the people on this bulletin and their compassion and willingness to help. All I had to do was bring something to their attention and ask for some help with it. They rallied, like they always do. You can count on the people here. We are all different and you will get different responses and different feedback but that will allow you to pick and choose your own path.
Thank you for giving us a chance. We love to help people.
Shirley in AR. who feels good about being nosy.
Rita: I can so relate to your message and frustration. I also went for quite some time without me or my physicians knowing what the heck was going on with me...I had every theory under the sun (ranging from just plain old work stress to a brain tumor!). But once I found that name/diagnostic category and every symptom fit like a key, I also felt "normally abnormal". That made accepting this illness much easier. I have learned to live with the disability, and even find humor in it at times. Although it is hard to imagine how this can be happening to me. I too have always felt very successful, and could usually tackle problems. This one seems more like it is moved in for good though...especially knowing that I have a strong family history of dystonia. I still love life and my family like crazy, and even enjoy work more than ever. Taking public transportion has its advantages too...although it takes me about twice as long to get to work, I can do lots of reading (which I still can do except for on really bad eye days). The social aspects were quite embarrassing at first, but now I am pretty used to it. People I work with are all used to "Dr. Blinky"...its the new people, that make it a little uncomfortable. I go to meetings where I spend practically the whole day with my eyes closed (that can be draining...and distracting). My wife tells me to wear sunglasses and at least it would look like I was paying attention (which I am dispite the closed eyes!). I have started taking Paxil and that seems to take the edge off of that social anxiety (when I first had BEB/Meige onset, I hid in my office on bad eye days). I now don't care so much how I appear thanks to those little pink pills. (By the way, any one ever hear that there are problems taking Paxil and klonopin at the same time...which I do when things get really bad...my BOTOX treatments haven't been that effective and haven't lasted more than 1 month despite doubling the dose).
Well Rita...I wrote to support you and ended up telling my story instead! Sorry. I have found that listening to eachothers stories is important..and makes us feel less alone with our struggle. It is a rare disorder, so it is not like there are crowds of BEB/Meige folks so you can discuss the latest treatment with just about anyone while you are waiting on line at the grocery store! So here we all are on the web instead (THANK GOODNESS FOR THAT!). I wish you the very best. Know that you are not alone, that we are working hard to understand the etiology and find new treatments, and that most important, while life may be different with BEB, it is DEFINITELY worth living and enjoying to the fullest!
A big hug to ya
Re: To Andy
Your Paxil would be the same like my Celexa, and
your Klonopin would be the same like my Ativan.
These are the types of meds. used together to help our symptoms.
It took me a very long time to get the right combination and dose
that helps me. I've been on these types of meds. for 7 yrs.
I'm happy to hear you are doing so well.
To Mindy & Sally
Mindy and Sally: Thanks for the reply about klonopin and Paxil. Mindy what doses and frequency do you use? I am still experimenting myself and haven't found the right combo. The doc had me taking 40 mg (i.e., 2 pills) of Paxil every morning. I generally take only one though, unless I have lots of social interactions/meetings planned for the day. It seems to work pretty well without major side effects. The klonopin I have not figured out yet. I often take 0.5 mg at night for a better night sleep (which is a big predictor of what kind of eye day I will have). The doc had me taking 0.5 three times a day which would turn me into a walking zombi! Instead, I have tried a half (0.25 mg) on an as needed basis...with little success. Any recommendations? I work at a job that requires constant mindfulness (I am an epidemiologist), and being groggy at work is not an option.
Re: To Mindy & Sally
Andy, have you tried benadryl? That's the only thing that helps me with the breathing spasms and the eye spasms. I tried Klonopin, but it messed up my sleep. I would go right to sleep, but then it seemed as though I were aware of sleeping. I was very tired when I finally got up in the morning. I do sometimes get tired at the end of the day from taking Benadryl, but I could not get through the day without it, because when it wears off I can't talk to or look at people without blinking and making the awful face contortions in addition to being short of breath. I rarely have to take the Benadryl after 1 or 2 p.m.
Jeannie: I haven't tried benadryl. What is the dose and frequency that you use? I don't have the sleeping problem that you mention with klonopin though...I seem to sleep fine, and wake up pretty rested. But I would like to try benadryl as well...I have a neuro appointment for Boxtox in a couple of weeks and will discuss.
thanks for the advice
Re: To Rita
How much paxil do you take? I had taken 10 mg daily (half a little pink pill) for several years then when I last saw my primary care physician a month ago, he thought we should up it to 20 mg. I decided on my own that it was making my head woozy and I just stopped cold turkey. I think that was a BAD idea, as I've done lots of crying and feeling depressed lately. Can't always hide it. I go back to the doctor on Friday and will tell him what I've done and see about getting back on it. It must have been doing some good. I don't take any other pills for BEB ... just Botox every two months. I do take a number of other pills for other ailments.
It was nice to read a bit more about you. I'm glad that you can still work and read. Your wife has the right idea ... I often wear my sun glasses even when I could manage without, just so people won't have such a good look at my eyes doing their thing! I feel less self-conscious in the glasses.
Sally in North Idaho
It seems I've had this forever off and on, but when it got to be a daily and hourly problem, I really got frustrated. My biggest frustration came at work - trying to do my work well was deteriorating and that was a blow to my self esteem and independence. Then I had to go out on disability and became concerned about how we would make it financially. My independence suffered greatly, but thank God I have a very supportive husband and a wonderful close friend who patiently helped me when I need help and let me do things on my own when I can. The stages of grief have occassionally returned, but life goes on and I found out you just have to get over it and move on. One of the most frustrating things is having to go to bed because of the pain, spasming, sunlight, etc. That seems to be a constant on-going battle for me. I've never liked going to bed before I had this, and now I resent it cutting into my day. I always enjoyed reading and that was taken from me with this disorder, but then I learned about The Talking Book Library and get books on tape regularly now. I also have inquired into other areas to help me through this. Although not a BEB support group per se, the Visually Challenged Support Group I meet with once a month is very helpful. I've learned that as a functionally blind person, I may qualify for The Hadley School for the Blind and take regular college courses and I'm hoping I will get accepted. I'm still waiting for that news. My main objective right now is to learn Braille. I think the most important thing for all of us - and it definitely is evident from the posts here on this BBB - is never give up. Always search for what's out there that can be of help to you. Never give up.
graceanne in port orchard
A positive plan
Wonderfully stated, Grace Anne. Your upbeat, caring personality comes through and I can see that you've been thinking and planning how to make the remainder of your life a positive experience.
"It seems I've had this forever ...." Just reminded me that at a womens club meeting yesterday, one of the gals had a picture from long, long ago of my second grade class. There I was, standing in the front row and squinting and scowling at the world!! So was that a harbinger of things to come???
Sally in North Idaho
Grace Ann, I congratulate you on your positive attitude. It is so important to maintain that as I see so many people who live a much more miserable life because they feel sorry for themselves and give up. I always think about the people who are worse off than I am.
I also give you credit for being able to go bed when your eyes are bad. I just cannot seem to take that rest that I should and I know it probably does not help my situation.
By the way, do you use your local Library for the audio tapes also? I use Books aloud but I don't particularly care for most of the readers. As you know, they are not the original audio tapes from the publisher but are tapes done by volunteers who read the books themselves. I much prefer the actual published tapes. Although I live in a fairly small town, the library here havs close to 3,000 audio books which is great. I also contribute new ones if I happen to buy some. ...Good luck..Alan
I'm unable to talk/type straight right now about the topic Frustration - as I am SO FRUSTRATED I am unable to use my usual methods to help me (except to post a bit on this bb)!
I had botox 2 weeks ago and the side effects are TERRIBLE - I've never had so much anxiety, sinus-type problems (although I believe its from the botox and not really sinus) and coughing, pain and more after the injections. I'm hanging in but its really so much more difficult somehow this time. Better days ahead
June in Toronto
Just as everyone else has described, I have had periods of frustration and depression because of this illness. Too much of my identity and self esteem were tied to my job. When I could no longer do the job I had held for 27 years, I was scared. I hid it for about 6 months, primarily by isolating myself from co-workers. I had every excuse not to attend a staff meeting. I was a lot like some of the other posters. Full time employed, raising children, maintaining a home, striving to be a good wife, doing community volunteer work. All of a sudden I reached a point where I could not function. I would come home and go straight to bed with a splitting headache from fighting the spasms all day. I didn't know what it was, and no one else seemed to know either. In fact, those closest to me thought that it was something I could control, and for awhile I thought I was having some kind of breakdown. People did not want me to talk about it either. My youngest sister told me that she didn't like me talking about it as it made her feel old. I am now on disability and like Judy, I was always told that a person who didn't work was worthless, a bum."On the dole" like Judy said. I had to tell myself over and over that I worked for and earned my social security benefit. I had to retire early, and begin to find a new way of living. I was always one to be in control, and felt responsible for things I had no business taking responsiblity for. I have let go of many things, much to the surprise of my family. When there is drama, I just tell them I am not going to go there with them. On a positive note, I have learned some valuable things since getting BEB. My life is very different now, and I can't say that it is worse. It is just different.
Hi everyone, like you I am VERY frustrated today. Every morning this week I have had to go back to bed for a couple of hours because my eyes were shutting from the time my feet hit the floor. Then my eyes might behave for just a little while. As long as I sit around and do nothing they behave but I keep seeing things to do and when I try to do just the simple task of making beds, fixing meals, it's a wopnder that I haven't burnt myself or cut my fingers off. (My guardian angel is watching over me) straightening up the house they close down on me and by after noon after the fight/battle/struggle of trying to open my eyes with my forehead I have a terrible headache. Sorry to whine and complain but I am VERY close to tears today. I have tried to do a little tole painting this morning and my eyes just squeeze and clamp down so I gave up and just trying to read the BB is a major problem.
I went to a new doctor Feb. 1 at Duke Eye Center and I tried the Botox shots with a new doctor. His technique was different from my other doctor and the squeezing went away almost immediately but the pull down , shut and hard to open part did not go away. I hoped that each day that part would get better. It did not. I had the same problems with the dry eye thing and for 3 days could not go out of the house because I had to keep my eyes lubricated and the sun was shining. On Feb. 10, my eyes opened for that one day. One day that I could see, no squeezing, no pull down sensation, just a slight flutter once in awhile. But after that one day it was back downhill. I go back on March 1 for follow-up and he told me that Botox would not be an option for me. The only other recourse would be to wear the "eye crutches" or "tack" my eyes open. He did not say if he would or would not tack them open. So I am on my own until the Botox wears off. I go back July 5th for re-evaluation. But meanwhile I am in misery, especially today. He said that the reason the Botox did not work for me is becauses I have Apraxia.
Shirley I tried the combinations of medicines that we have talked about and they worked well the first day but they have not been consistent. One day they help, the next day they don't and today is one of those days.
I am down today, but not defeated, I keep HOPEING. I am so thankful for the friends that I have met on this BB and the encouragement you always give.
I was turned down AGAIN, second time now for disability so I am seeing a lawyer Tuesday because I have requested a hearing by administrative law judge and I think I will need a lawyer for this stage. I will not have to pay anything unless I win my appeal and then it is only 25% of what I get in back reinbursements. I asked the person at the Social Security office what I would draw on disability, she said I would get what I would have gotten if I had waited till I was 65 and when she told me the dollar amount I felt that it would be worth fighting for.
Sorry, didn't mean to say so much but just venting my frustration to my friends.
Joyce in NC where the sun is shing and I can't go out or even open my blinds and drapes.
Joyce, I feel your pain. I don't know if it'll work for you as it did for me, but I'm going to suggest it anyway; although it's a bizarre and desperate resource. Prior to getting results from meds and botox, I bought clear surgical tape from the drug store, and taped my eyes open. The tape was applied from mid eye lid to forehead. It had to be applied in such a way to allow the bottom part of the lid to close without strain. It worked for me and it felt wonderful. I left the tape on for 4-5 days. My Doctor encourages me to do whatever helps, so I felt justified. I even applied make-up over the tape when I went out. If people knew I had tape holding my eyes open, they never let on.
Joanne, thanks for that suggestion I will certainly go out tomorrow and get some of that tape. My only concern is that my eyes pull shut so forcefully that I think it would pull the tape off. But I will give it a try. Thanks so much for your concern you don't know how much it means to me right now. Joyce
If you got the botox the first part of February, it could easily be wearing off by now. I have to get my injections every 8 weeks. When you say that your eyes are forcefully closing, then your botox is not working. My medications don't work for me either, if the botox has worn off. I disagree with your doctor about not being a candidate for botox because of the apraxia. I'd much rather have just the apraxia and not the apraxia and the painful squeezing. The botox at least gets rid of most of the squeezing and spasms. It won't help your apraxia but you are having forceful pulling and closure that can be helped by botox if given in the right places. Or am I misunderstanding you?
Sorry that you are having so much trouble. I can relate.
Shirley in AR.
Shirley - I don't understand this doctor either - I don't know why he said that Botox wouldn't help me. I went to him because he is at one of the best University Medical centers in NC. The other doctor was at Baptist Hospital and he was suspose to be one of the best at that hospital and all the times that he gave me the Botox I did not have good results. One day every two -three months or 1/2 day every two - three months is not my idea of success. The only time I had any results was for the 3 weeks January 2000. In May '99 when I had my surgery I had only 6 weeks with my eyes open.
The doctor that I went to at Duke has lots of patients like me and they seem to be doing OK. I talked to several while waiting in the waiting room. I have been in misery actually before the March 1st follow up visit. My eyes would barely open then but I was not having the forcefully clamping down shutting of the eyes that day , that has begun in the last two weeks and especially this week. I feel like my whole face is in convulsions. I don't understand why the Botox works for others but not for me. Some one mentioned the Myobloc but my understanding it is not being used for the eyes at this point only for people with the cervical problems.
I hate complaining but I really don't know what to do now. I think I will call him Monday and just let him know what is going on and maybe he can explain again why he doesn't think Botox will help me.
Joyce in NC
Joyce, I went to the "expert" in my local area for my first five sets of botox injections. Most of his patients did very well. He practically threw up his hands with me, saying that I wasn't responding the way that his other patients were. I have spoken to several of his patients and they get good results with his technique and the standard dosage that he gives everyone.
The man would not work with me or alter his technique (gave me a ptosis each time he injected me). He finally told me that he wasn't even sure that I had BEB. He said he didn't know what I had. I asked him if he ever discussed or asked for advice from his colleagues regarding a patient that wasn't responding well to his usual. He said that there was no need to do that, that he had given botox to thousands of patients for years. I fired him and looked elsewhere. I found someone who keeps up on the latest techniques and information and will listen and talk to his patients. I agree with his treatment and he is not and egotistical b-----d (scuse me).
You should complain if you are not satisfied with your care. Some of us don't fit into a neat little niche of people that respond in "typical" fashion. Most of them are not on this board.
I think that the botox probably does work for you as it stops the forceful spasms. You just happen to have an apraxia problem, also that is difficult to treat. I'd try to get another opinion and see what options are available to you.
Myobloc has not been approved for BEB. You could ask your doctor but I don't see where that would help your apraxia problem, either. I'm not trying to depress you. It is hard to know what to do. I plan to have some surgery done next month but I'm certainly not betting on that correcting the situation entirely. I'm hoping for some improvement. Then, I'll go from there. Knowing my problems and how they can be dealt with, helps. I do have a plan of action.
I know that you had an upper myectomy in 99. Do you know exactly what was done or how extensive it was or if they did any corrective procedure on your levator muscle(that helps you open your eyes)?
Shirley in AR. just concerned for you
Hi Joyce, I had my first injections in december and i just felt that my face wasn't as tight. I asked him how much mg. he had injected and he said 20mg. total. 2nd injections were 40mg. this was on March 14th its been 10 days and my face isn't tight (squeezing) by my eyes are not open and some of the girls here on the bb have told me that it can take up to 3 weeks. Maybe you need more of the stuff. Don't give up hope. I'm sure most of us on the bb pray for each other. Here is something I copied out of a mag.
I KNOW GOD WON'T GIVE ME ANYTHING I CAN'T HANDLE.
I JUST WISH HE DIDN'T TRUST ME SO MUCH!
I'm praying for us for patients, and sight and alittle help with the cross we are carrying.
Aaaay-amen, Aaaaaaay-aaaymen from me, too!!
Re: Joyce in NC
Joyce, it looks like you and I feel about the same right now - close to tears - end of rope, etc. I even went to our church hoping this am to see the minister (luckily I was able to although a great struggle with the sunlight - so for being able to walk there I count my blessings). There was nobody `home' at the church, but the little walk did me good and I said hello to 2 acquaintances on the street who talked to me a bit. It sounds like you are suffering a lot more than me, BUT our own pain is the most we can each bare I guess at any given moment.
Please Joyce, hang in there, try to be good to yourself and I'm sending the Guardian Angel Raphael (chief angel in charge of health!) to help you out (please return him to me asap!!!!!).
Junr in Toronto
Re: Joyce in NC
Angels multiply when needed, so I am sure there will be a whole bunch of them fluttering around to help both Joyce and June. We just have to acknowledge that they are there and let them help us.
That's my belief, anyway. Lots of people don't agree and say I live in a fantasy world. So be it. Sometimes that's the only world I can handle.
Sally in North Idaho sending a lovely cyber pansey to smile at each of you in hopes that it will brighten your spirits.
You'll never really know HOW MUCH YOUR WORDS ARE APPRECIATED on such a day as this!!!
I believe in Angels - I keep asking my guardian angel, just before I go off to sleep, who he/she/they are. I've heard tell he/she/they will reveal themself to you in your dreams. But that's not happened to me UNLESS I can't read the message properly! What do you think?
June in Toronto
Hi June in Toronto.....about guardian angels....
Someone told me once that if I wanted to get closer to my guardian angel,to give her a name...so I did, and now she's become a real help. I even send her off to friends who need help. I'm feeling a lot better since reading all the postings, so I'll send her over to you to hang out for a little while...OK?
You worked at the University of Toronto???? I retired from Rutgers, The State University of New Jersey about 8 years ago. I was the "lucky" person in charge of parking services for 17 years. Perhaps that explains the blepharospasm...???
Thanks for sending your angel to me - are you allowed to tell me his/her/their name? I'll send the angel back asap.
Yes I worked at the U.of T. - I did a lot of work with students who plagiarised - so many of them! The last 2 years of my job was so...stressful I'm sure thats what brought on mhy beb (I'm not saying it causing it).
June in Toronto
Re: Joyce in NC
Sally and June - I believe in Angels too. I believe we all have a guardian angel who watches over us. My faith in God is the only thing that gets me through this whole process. I believe He has a purpose and a plan for my life and that everything that happens to me - good and bad - is designed to make me a better person. Somedays are just harder to understand why this will make me a better person.
Thank you both for your words of encouragement - maybe tomorrow will be better. Your BEB friend Joyce
Re: Joyce in NC
Some days Are harder to understand why this will make us a better person.
I think it's because the harder our struggle is, the more we can reach out to help the next person. We will be more compasionate and sincerely
I believe I am getting through this only by the grace of God.Our prayers for each other and the angels He sends are an added blessing. I thank Him for bringing us together.
Amen & God Bless,
Mindy in NY - totally exhausted after a 3 day spiritual seminar.
Re: Joyce in NC
Mindy, would love to hear a bit about this 3-day spiritual seminar
you mentioned. Joanne M. San Diego, CA
Re: Joyce in NC
It was called Finding Hope Again, by Neil Anderson,
Pres. of Freedom in Christ Ministries.
You can email me I'd love to share with you. I don't know your email
my email address is MindysPlace@aol.com
joyce, could Myobloc possibly help you? that i understand is for those who are immune to Botox?
June, what does your doctor say about these symptoms? I've forgotten, how many Botox treatments have you had?
I'm so sorry that these things are happening to plague your life. I'm praying for happier days ahead for you. Hang in there.
Sally in North Idaho
Thanks Sally for the encouragement - all taken (the more the merrier!) today!
I telephoned the neuro's office, told them about the symptoms (2 weeks after botox), and the sec said `they are not NORMAL beb/botox symptoms` but she would tell the doc. I haven't heard anything more - my normal way is just to grit my teeth, vent on this bb and wait for the botox to work well.
I've had beb for over 6 years now - get botox injections every 4-6 months - haven't counted how many that is. The usual routine for me after botox is nothing happens for about 3 days, then for 3-4 weeks lots of stinging pain, etc. I do use LOADS of preservative-free creams/drops, take eye breaks - the usual. This time I have the sinus-type coughing, mucus, nervouseness/agitation on top of the others. BUT I will survive - I made myself a Cafe Latte (skinny version) today and pretended ALL WAS WELL AND THAT I WAS HOLIDAY SOMEWHERE ENJOYING THE LATTE! Hey whatever works right?
June in Toronto
Iknow of the frustration all of you are talking about.Itry to except my disordes & think God for all blessins I willbe 69 Thursday & consider my self lucky when some of you have beb at such a young age.This week has really been frustration. My husband had a 5 artery bypass about 3 year ago & is having problems again. He goes Tues. for a stress test & x rays.My eyes starting to close again . I think it must be from all the stress.
God Bless All Colleen
I'm so sorry to hear that your husband is having problems. This is a scary time for you and your husband. Hang in there and let us know how everything goes. You may need to rest your eyes a little more during this time. Do you have relatives around to help you out right now to lighten your load a little or just to be there with you?
I'll be thinking of you hoping all goes well.
Shirley in AR.
I wish you and your husband good luck with his tests.
I wish you a very Happy Birthday.
I'll keep you both in my thoughts and prayers.
Thanks Mindy for ypur good wishes
Shirley, your instigating keeps us going!! One of my frustrations with this disorder is the inconsistency of it and lack of being able to plan
my life. I can be feeling great one day and the next is the pits as you all know. It may be one thing learning to live with a disorder that has some predictability but this is different. It has forced me to live a day at a time and be thankful especially for the good days. I get
frustrated at the lack of knowledge about this in the medical field.
In that area it has forced me to be assertive in taking control of how
I am being treated for this. We usually like to think physicians have
a handle on illnesses but in that way this is different as well as we
all know. I used to get frustrated with regard to the botox injections;
not knowing how long they will work and if they will continue to work.
But I am forced to give that up living in the day at a time mode.
I get frustrated when I am short with co-workers and friends on my "bad"
days. This bulletin board has not only been a good outlet for me
(especially when my retriever died), but it is wonderfully informational
as well--you are all so helpful and responsive with feedback to
questions. The folks on this board are the only ones who REALLY understand the trauma and difficulty of this. It is really important
that we have and can rely on each other in that way. I agree with what
Shirley said regarding taking control over our own medical care and how
we conduct our lives because the disorder is out of our control. It also helps me spiritually to release and know that God has a master plan
and somehow whatever is going on with me fits into it for the good of
the whole. I've gone on enough. Take care you all and let's keep
hoping. Joanne M. San Diego, CA