Re: Bio's |
Good idea, Judy.
I'm Shirley Barr-loudmouth of the bunch/instigator and sometimes trouble maker/usually on a mission to stir things up and or keep things moving along on the bb
49 years old
Arkansas (USA) middle of state
Husband Roy, 2 sons-James-20, Scott-18
Onset of Blepharospasm approximately 2 1/2 years ago. Also have Meige and Apraxia of lid opening.
Had upper limited myectomy with ptosis repair and levator tightening with cosmetic reconstruction about 6-7 weeks ago in Salt Lake City, Utah by Dr. Richard Anderson, primarily to help with Apraxia problem.
On botox, Klonopin, Benadryl and Adderall and numerous vitamin and mineral supplements for the BEB. Am slowly seeing some improvement from the surgery.
Had to quit my job as a registered nurse 2 years ago and am on SS disability. Was turned down on first try for SS but was approved on appeal. I did not use a lawyer. Took 6 months.
Interests-family, computers, pets(2 dogs-collie and Yorkshire terrier, 1 cat, 1 parrot and 1 parakeet) digital photography and needlework(when I can see) and travel.
Type doctor I see for BEB- Neurologist specializing in Movement Disorders-Dr. Joel Perlmutter in St.Louis, Missouri.
I'm Kelly Saffell, the youngest of the bunch to my knowledge.
Dallas Texas suburb
Husband Aron (12th anniversary tomorrow!) and daughters Morgan-6 and Cory-3
Symptoms: onset of beb 6 years ago after birth of my daughter. I also have meige. Began botox 5 years ago and currently take klonopin and an array of vitamins/herbs. Received botox during my second pregnancy after a year of research-she's perfect! I was interviewed by Ladies Home Journal for an article on botox in April issue and was on the Fox local news health report in May.
My interests are my kids-that is all I have the time and energy for.
I worked as a CPA as the assistant controller of a title company for 9 years. I quit in Dec 1999. My condition worsened after Cory was born and my shots only lasted 3 weeks. After struggling for years to do it all I finally gave up and my quality of life has improved immensely. I receive botox in my eyes every 8 weeks by an ophth. surgeon and in my jaw every 12 weeks by a neuro.
I like this a chance to know every one better
My name is Colleen Milligan the old one of the bunch.
I live in Carbondale Illinois southern part of the state
Married 51 years to Ralph
Son Michael 49
daugthers Kathy 47 Julie 41
Like to cook read & work outdoors
Blepharospasm 3 years Parkinson 2
I go to a movement disorder neurologist in ST Louis MO
I receive botex every 2 months
I'm Sally Holt. I am one of the "elders" of the bunch and I live in North Idaho near Spokane, WA, where I have my Botox treatments every two months from a MDS neurologist, Dr. David Greeley; no other meds for blepharospasm/Meige.
Family: Husband, Jerry, who is retired but still farms (also taught school for a few years in the past); 3 grown sons: Kevin, a lawyer; Chris, executive with the USDA; Randy, a farmer. One grand-daughter, Angelique, just completed freshman year in college. Pets: 2 dogs, "Kelly" (mostly Brittany Spaniel) and "Benji" (mostly Irish Terrier and looks like a Benji). (They hate each other, which keeps life hopping!)
Residence is in small (population about 200) town on an Indian reservation (no, I am not Native American). We do not live on the actual farm at this time, might do so again later.
Previous life: I was a school librarian and secretary.
Interests: reading and writing (watch for my book to be published in a few years!), dogs and this BB for its seriousness and also the banter that goes on among the posters (postees?) whatever.
Diagnosis: Blepharospasm/Meige about 2 1/2 years ago after many years of searching for answers.
sally, what is your book going to be about?
--modified by kathy at Wed, Jun 13, 2001, 18:12:27
Different episodes from my sons' growing-up years. Most are humorous, some are sad.
Perhaps presumptuous on my part, but I didn't mean it to be. It is good therapy for me and will most likely never make its way into the hands of any other than family and friends.
Sally in chilly North Idaho
still, it's a great endeavor and keeps your mind active. you are the family historian and i'm sure the rest of them will enjoy it and any little grandones that might come along.
i think i also mentioned on this board that my mother has Alzheimers. Anyway, a recent article in Time magazine and the Minnesota nuns study group emphasized how important it was to engage in stimulating activity, because SO many Americans are concerned about memory loss and i consider this board one of the most valuable tools to keep our minds active; just consider how many things we discuss!! there i just had to figure out how to spell 'empthasize'.is that right? off my soapbox for now, but do you understand what i'm saying...about everyone with this disease who could easily slide into non-communication?
I'm Lyn Patterson.
Live in a very small semi-rural area Lake Clifton, Western Australia - nearest town about 40ks away and capital city Perth about 140ks.
Am 55 years old and married to John, no kids.
2 dogs: Rottie/Staghound cross - BIG 10 yrs
Red Cloud Kelpie/miniature Collie(guess) cross - not so big 8mnths Both came from K9 Rescue.
4 chooks, 5 geese and 17 ducks
Blepharospasm for 12 years, Botox for 10 years about every 8 weeks though sometimes forced to wait longer until the doctor has a clinic
Doctor is an Ophthalmologist - don't know if we have any Movement Disorder Specialists here - will have to check
Interests: Native Plants (Wildflowers) secretary of Mandurah Wildflower Group Inc and produce a Newsletter, brochures and our range of greeting cards. Computers, of course, and reading.
Was a librarian in former life. Born in Western Australia, lived in Sydney, New South Wales for 12 years and Cairns in North Queensland for 5 years before returning to Western Australia in 1983. Moved to Lake Clifton in 1993.
I'm Carolyn Smith from Plano, Texas. I have had BEB for about 5 years, but it took what seemed like forever before I was finally diagnosed. I had sinus surgery and that seem to throw me into the spasms big time. I also had taken many rounds of antibiotics, biaxin many times.
I still work and my spasms are pretty much under control with my injections and 3 to 4 mg of artane. I have a daughter and a son and 2 wonderful grandsons.
I wonder how many of you are from this area. I know that Priscilla and Kathy are here. I don't post often but enjoy reading postings every day.
I live in Allen just a few miles north of you. Small world!
Great idea, Judy,
I'm Joanne Matuzas
54 years old
San Diego, CA
Divorced, mother of 21 year old daughter
Diagnosis: Blepharospasm, meige, diaphragmatic dystonia which includes
irregular breathing patterns. Onset of photosensitivity 4 years ago
and progression to meige and breathing dystonia. One of the bunch
still working as admin tech at local community college. Their accommodations at the office have enabled me to keep working til now.
Not sure about tomorrow!!
Physician: Neurologist (currently researching for MDS)
Meds: Botox every 3 mos. Benadryl, Serax, Supplements, Yoga, other
activities for mind-body connection
Interests: Landscape painting, travelling, gardening
50 and 11/12
Onset at almost 50
Currently on Prozac, parsitan, supplements and chinese herbs (don't have a clue what's in them, box reads like a Chinese menu)
Botox every 3 months. Diagnosed early on.
Married with an 8 year old.
Teaching 1st grade and loving it; however, it is stressful.
Seeing a wonderful therapist to help cope, etc.
Hobbies: school, reading (when I can), school, cooking, entertaining, school.....that's about it! Did I mention school?
I am going to be co-chair of a support group in Oxnard, CA.
Very proactive about my disorder - driving my doctor CRAZY, I'm afraid!
Joanne - I, too was diagnosed with photosensitivity about a year ago. My eyes have always been extremely sensitive to the sun (I got FL-41 coating on my glasses recently.) I now break out in a rash occasionally, even if I avoid the sun and use sun block. A dermatologist prescribed Allegra, and it seems to work. I hope they don't decide to make it non-prescription-it's expensive. Altho the dr. disagrees, I think it is partly because of some of the meds that I take that warn against exposure to the sun. Mary
I am extremely photosensitive ... always have been to some degree, as far back as I recall. The discomfort and sometimes even pain, of light is the worst symptom of BEB for me ... more so than the spasms. I have not been able to try the FL41 glasses yet.
Sally in North Idaho
joanne, i'm dying to talk to someone about art. I have spent virtually the past 2 years trying to get a severe pain situation under control and now that it is at least better i plan to continue at some point when i am not waitng on phil, the cat , and the bird. want to start an art conversation? i have been painting off and on for 23 years.
--modified by kathy at Wed, Jun 13, 2001, 18:13:01
Delaine Inman, and part of the comedy team. A full fledged redneck from Tennessee who loves the serious knowledge I learn from my BB buddies and couldn't survive without the humor and support I receive here.
50 years old, Columbia, TN (about one hour from Nashville)
Husband Rusty works at Saturn in Springhill, one son married & living in TX. I wish I could move Arkansas so he'd be closer, but I don't know where I could put Shirley and everything else in Ark. I have daughter and granddaughter who live with me while she is in Nursing school.
BEB hit me hard Jan. 1999 and I've been unable to work as a nurse since May of 1999. I had good disability insur. at work and applied for SSD and received it on the 1st try within 60 days even though many people including docs said it couldn't be done. I hate being told it can't be done.
4 rounds of Botox every 3 months, a laundry list of medications both prescribed and over the counter, every alternative therapy I could afford and every magic potion I heard about with no positive results convinced me to have surgery in May of 2000. Results were not as much as I hoped, but Botox does seem to work a little now. I started klonopin 1/4mg/4 times a day about 3 months ago and that has helped.
Have seen numerous types of docs and now see a neurologist in Columbia that I like.
Love music of all kinds, writing, landscaping and growing flowers help me forget BEB for short periods of time. My dog Dakota adores me and the feeling is mutual. Have a wonderful family and a small circle of friends who have stuck by me. Have always prided myself as independent, so I am learning many lessons from BEB. Miss not being able to jump in the car and drive like I could more than any other activity. Started a support group for Middle TN area which meets in Nashville every 3 monghs.(one group meets in Memphis for the Mississippi,Ark,TN delta area, but no other group or state organization in TN.) People as far as 4 hours drive to the meeting, which amazes and thrills me!
--modified by Delaine Inman at Sun, Jun 03, 2001, 15:56:11
My name is Mindy Passantino
New York City, New York (USA)
The end of this week will be celebrating 26 yrs. of marriage to my husband John. My son is 23, my daughter is 20.
3 yr.old dog Scooby. The shelter told me she would be a 35lb. Beagle.
She's a big strong 87lb. Beagle mix. She's very sweet and very affectionate, and extremely protective.
Diagnosed 8yrs. ago,Blepharospasm, Meige & ST.
ST is gone.
Presently on Parsitan, Lorazapam, Wellbutrin, Celexa
Work 2 mornings a week for my chiropractor.
Previously Nursery School teacher.
I love taking the time to enjoy everything I was unable
to do during my early years of BEB.
I'm June Floyd
|Re : Bio's --- Moderator-JB|
|Posted by June in Toronto ® (June Floyd,June in Toronto), Jun 04,2001,06:50
||Top of Thread
age 61 (if I posted later this month I'll be a year older!) and I live in Toronto, Ontario, Canada, Born in London, U.K. came here in 1960.
Husband John (second marriage - married 10 years)
I have 2 children - Bryan, age 35 lives in Saskatoon, Saskatchewan, Canada, and Christopher, age 33, lives (for now - he's a traveller) in Toronto.
John has 2 children, Laurie, 37, and Ian, age 35. We have a grandaughter, Aerin, age 10.
I diagnosed beb myself from a magazine article 6 years ago - neuro and opthal, had not diagnosed it as such. I also have meige. I now receive botox every 4-5 months from a neurologist specializing in movement disorders and it works well for me, keeping my eyes open. I do get a lot of side effects from botox for a month or more. I only take over-the-counter vitamins but will have to look into medications I think to help with the side effects of botox which, this time around, was bad.
Interests of late! Through our Dystonia Support Group: on May 14th we put on "An Evening With Lynn Johnston, who has Cervical Dystonia (famous Canadian cartoon artist and author of 200 books) for Dystonia medical research (a success in awareness of dystonia but not in research funds); on June 2 we piggybacked our annual Walk-a-Thon on Lynn J's name and had over 100 people attend (a complete success). Both events were a HUGE amount of work.
Interests to get back to: fitness (aerobics and acquafit), music, talking books (can't read books), family and friends.
In my working life I was a support-admin at the University of Toronto for 20 years. I am on disability.
--modified by June in Toronto at Mon, Jun 04, 2001, 07:32:39
Great idea, getting everyone together like this.
Good to be back; just had my Botox a week ago, and am now good for another few weeks, give or take a few side effects.
I'm Helen. Live near Vancouver British Columbia (in Canada)
61 years old. second marriage now in its twelfth year , to Kevin, Irish-born, who's heavily involved with the Gaelic language and Irish culture.
I was an elementary school teacher and librarian. Took early retirement at 59 when the Blephro became too much (made me irritable, I bumped into kids in the hall, stuff like that). Things much better since, and I love tutoring, which I do a bit of now.
Blepharospasm diag. six years ago after two years of trying to find out what my problem was. Thought I was going blind. Now controlled with Botox every nine weeks.
Physician: diag by Ophthalmologist. Botox was from another Oph. who's now specialising in cosmetic Botox and has given up her Blepharo patients. Currently in limbo, waiting to see what the next treatment will be like; it's from an Ophthalmologist who has a nurse doing all the Botox injections(!)
Sorry, this is LONG.
Interests: two dogs, a Lhasa and a maltipoo; gardening, some crafts but I'm no Martha S.; reading.
I also have an eighty-five year old mother living fairly nearby who's still fun to be with and is currently writing her biography.
Bio's on each
I'm going to bring this back up to the top of the BB because I think we can all learn from studying the profiles of each other along this path.
Please join in and describe yourself. Fellows, I know we've been getting off the beaten path with the 'days of yore', but the laughter is medicinal too.
Re: Bio's on each
I am 45 years old. I am a housewife living in Illinois, but until a couple of years ago, I mostly did clerical work and data entry. As I mentioned in my post under the contact lens heading, even if contact lenses didn't cause my problem, probably the first sign that something was wrong was when my right lens started bothering me all the time. I stopped wearing the lenses and had no problems for several years until I had to start taking psychiatric medications again (I forgot to mention I was on medication for several years as a teenager and I have been on and off ever since then, and I am pretty sure that is at least part of my problem), and within a week I developed facial pain that I at first thought was related to impacted wisdom teeth, but the pain moved all around my face and got better and then worse again for 3 years, and then in the summer of 1984 I started to have eye muscle spasms, just around my right eye. At first it was always triggered by reading, and since I have always done a lot of reading and I have been increasingly nearsighted since I was 7, I just thought I needed bifocals, but 2 ophthalmologists said that wasn't it. (I did get a pair of reading glasses anyway, which may or may not have helped.) From 1984 until last August, it was just a moderately irritating blinking tic, and from reading the board, I would say it sounded more like hemifacial spasm than like blepharospasm, but the first 2 neurologists I ever saw (in 1997 and 1999) called it blepharospasm and prescribed baclofen. The second one said I might eventually need Botox, but the most recent didn't recommend it. Since last fall it has gotten much worse. My eyes don't close, but the muscles that used to build up tension and release it every few seconds now build up tension throughout my waking hours and don't release it until I sleep, which is very uncomfortable. I have seen 2 ophthalmologists and 1 neurologist since it got bad; the first ophthalmologist said it was strabismus, and the other ophthalmologist and the neurologist said it was psychosomatic. I believe that is my official diagnosis at this point, although my therapist recommends that I get checked out at the Busch Eye Institute, which I will do if I ever have insurance that would cover it. I take 50 mg. of the antidepressant Serzone 3 times a day and 1 mg. of Ativan 4 times a day, which helped some in the beginning but doesn't now.
Sorry I am so long-winded. I will have to learn the meaning of the phrase "to make a long story short..."! If anyone responds to my post and I don't answer, that's because I will be out of town for a few days after tomorrow. My situation is so odd that I don't generally feel I have anything meaningful to contribute, but I've read this board every day since I first found it, and it does cheer me up to see so many people coping in spite of their problems. My only visual impairment at this point is that I can't coordinate my eyes any more (but no double vision, thank goodness), but I do have a lot of discomfort that is sometimes actual pain but usually just extreme tension.
Re: Bio's on each
It's nice to hear a little about you. Don't worry about getting long-winded--it just makes me feel better. It usually takes me 3 or 4 times as long to get to the point as everybody else and then I sometimes just ramble.
You may have several things going on. I'd definitely check into the strabismus angle and if that is a correct diagnosis, something might be done for that. In fact, they even use botox at times for strabismus but I would find someone that has done this a lot. Sometimes a strabismus won't even show up unless you are really tired or your eyes are tired and then it will become noticeable. If this is part of the problem, it could be worsening other things. A reputable ophthalmologist should be able to diagnose this correctly. Make a late afternoon appt. and work those eyes before you go in.
Blepharospasm usually effects the muscles around both eyes. Sometimes one being worse than the other. Hemifacial spasm usually only effects one side of the face. On very rare occasions, you can have HFS on both sides of the face.
After you find out about the strabismus, you might want to see a good Neurologist that specializes in movement disorders.(MDS) They possibly could help with a more accurate diagnosis. Your in limbo, girl. You need to find out what is wrong and tackle it.
It sounds like your therapist even thinks that there is something physical going on. Sometimes when doctors can't put a name on something, they will say that it is psychosomatic. Some of the drugs that are used for mental disorders can cause dystonia problems, also.
Keep checking in with us and let us know how you are doing. You will probably get some responses from others.
Shirley in AR.
The funny thing is, the 2nd ophthalmologist I went to was a specialist in adult strabismus, because that's what the first ophthalmologist said I needed. The 2nd ophthalmologist said he was going to send reports on his findings to the first oph., my psychiatrist, and my primary care physician, but as far as I know he never sent any reports to anyone. The one thing I know for sure about him is he really didn't like me, and I don't even know why. Maybe he thought I was just a waste of his time. Anyway, on my first visit, a technician in his office had me look into a machine that was supposed to give my correct prescription without anyone having to ask me any questions. I think that was because most of the patients were young children. As soon as the specialist saw the readout, he said my problem was just that my original glasses and the ones prescribed by the first ophthalmologist were too strong by about 1.25 diopters. He said I should try the prescription he gave me for about 2 weeks and I would probably feel better, and if not, I could go back to my old glasses. He also said I should make an appointment with his associate in a couple of months to see if I needed to do eye exercises, and if that didn't work, he could recommend someone who did Botox shots. I do believe the approach to Botox shots for someone with eye muscle imbalance is different than the approach for someone with muscle spasms, but it did sound promising.
Really weird thing: The glasses the machine picked for me are really good reading glasses, and I also use them to watch TV even though they're a little weak for that, but they have no distance prescription. More weirdness: After about 2 weeks, I did have a remission. For 2 weeks after that, I was perfectly comfortable both physically and emotionally. But it was too good to last, and over the next 3 weeks the spasms gradually came back. At first they would release every few seconds the way they did for all those years, but by the 3rd week the muscles would stay tight for 2 to 4 hours, and by the week after that, I had just as much physical and emotional distress as I started with.
So I went back to see the associate at the end of March, and I made the mistake of telling him how weird it was that the machine had prescribed glasses with no distance prescription. I should have left well enough alone. "To make a long story short," after he manually checked my eyes and wrote me out another prescription, I almost ended up with no glasses that I could wear even halfway comfortably. He also did tests to see if I had a muscle imbalance. I told him I had done vision training in the past and I learned how to pass all the tests, but it didn't help with the spasms, so I would prefer to get a referral to the doctor who did the Botox. The associate said he would check it out with the specialist and get back to me. Sure enough, he called me promptly and said the specialist said I did not have any muscle imbalance and he would not recommend me either for Botox or for muscle surgery, which I had thought was the alternative. But then the following week I got my new glasses and I tried to call and tell him the prescription hurt my eyes as soon as I put the glasses on and looked around the room, and neither he nor anybody else from that office would return my calls. I had traded in the glasses prescribed by the machine for a free remake, and under ordinary circumstances I don't think I could have gotten the lenses back, but since my husband is an optical lab tech and he did the work himself, he still had the old lenses, so no loss there.
Anyway, I have pretty much exhausted the options my insurance company will allow me. I am due to get a very small inheritance from one of my aunts sometime in the next year or so, so if my husband will let me, I would like to spend that to go to the Busch Eye Institute and see if I could at least get a diagnosis, even if I couldn't afford the treatment after that. Unfortunately, although my husband was very enthusiastic about getting my eye fixed back when we were first together and the problem was still just a little tic, he has pretty much lost patience with me also since then. I finally had the MRI the neurologist I saw in 1997 wanted me to have (because I didn't have the common sense to realize that it would be pretty useless, considering that the neurologist I went to most recently said he could predict in advance it would be perfectly normal), and we're still waiting to see if the insurance company is going to pay on that.
For now I am just hoping for another remission, preferably of much longer duration. But if and when finances permit, I will continue my quest for an explanation of what is physically going on, because even if it is psychosomatic, something has to be happening to produce the spasms.
Thanks again for your encouragement!
Sounds like you are getting the run-a-round from the eye doctors. It seems that they were confirming the diagnosis of strabismus and then changed their minds or didn't want to deal with you anymore. Will your insurance pay for any other eye doctors to get another opinion?
Usually with Blepharospasm or Hemifacial Spasm, an MRI will be completely normal, so your Neuro was right about that. They rarely ever do them for Blepharospasm.
Besides everything else, stress always makes things worse.
I'm at a loss right now for any suggestions for you except what you have in mind when you get your inheritance. Wish that I could be of more help. If I think of anything, I'll post again. I think that there is something physical going on and you may be dealing with more than one problem.
Shirley in AR. who has a migraine and is going to go crash with a wet wash cloth.
I crashed early with a wet wash cloth. It's the first time since I started getting botox that I've had one this bad. Maybe he didn't get the injections in the same place this time. I sure hope the botox isn't wearing off after only 5 weeks.
Virginia in AL, where it was so humid today I could hardly breathe.
I sure had a doozy of a migraine. I haven't had one in a long time. The botox had taken care of that. I haven't had any botox in my forehead now, though, for 3 1/2 months. I just got it in my lower lids two weeks ago. The headache started yesterday morning and got worse as the day went on until I finally crashed on the couch sometime yesterday afternoon. I had it all through the night with the nausea and right sided headache. Late this morning, it finally went away. Almost 24 hours exactly. I was miserable. I'll be glad to get the botox in my forehead again if only for the reason to stop the migraines. Maybe it has something to do with the weather. It has been extremely humid and hot. Like you said, you could hardly breathe. The rain got here about noon and that is when my headache went away.
Hope that you are feeling better, too, Virginia.
Shirley in AR. who feels a whole lot better than she did at this time yesterday.
I'm fine today. I slept okay, but woke up to flashing lights and thought it was going to be another bad day, but they went away and the headache stayed gone. I even "worked" outside in my yard most of the day with no problem. I think it must have been the humidity. It's still humid today, but "normal" Alabama humidity - not that oppressive stuff we had yesterday.
Glad you are feeling better.
Virginia in AL
thanks again for your concern
I have to admit I don't understand why that neurologist back in 1997 insisted she couldn't help me unless I had an MRI. Maybe she had a previous patient whose symptoms were caused by a tumor.
I just wiped out a long and dismal message that I was writing, but the point of it was that after I posted my messages yesterday and stopped and thought about what I had written, I understood why I keep getting the diagnosis of psychosomatic. I don't doubt that there is something physically wrong with my eye that caused the original blinking tic that lasted for 16 years, and maybe the condition was going to get worse anyway, and maybe my increased physical discomfort has contributed to my extreme emotional vulnerability at this time. But honestly, the 2 out of state moves my husband and I have made since we got married at the end of 1998 have not been good for me, especially this last one. If I didn't have the underlying mental illness to begin with, I probably would have adjusted, but this last move broke my spirit, and I don't really know why. Except for my 5-week remission in January and February and 3 quite good days at the beginning of April, even when I am with my husband and his family, doing things I used to love, I feel a terrible sense of being alone. At first my husband tried to cheer me up, but nothing helped, and since then he has become angry with me. When I asked him if he would pay for me to visit my daughter for her high school graduation, he said at the time that he would do it, but that after that things would have to change. So now the time has come, and judging by the atmosphere last night and this morning, we are at a point of crisis. If all goes well, I will go on my trip as planned, and next Tuesday morning I'll be back sitting in front of this computer. If all doesn't go well, I don't know what will happen, and I am probably bringing problems on myself by imagining them so vividly. I don't know if I am just depressed or paranoid or what, but I did read about psychogenic dystonia on one of the links the other day, and the article said both manic depressives and schizophrenics experienced changes in the symptoms of their dystonia depending on their mental state, so I can see that under happier circumstances, I might still just have my little blinking tic.
Well, please forgive me for dumping something that is only indirectly related to blepharospasm. As I say, if all goes well, I'll be back here next Tuesday, not necessarily posting except to say that all went well, but definitely reading.
Thanks yet again for your concern!
Re: thanks again for your concern
We get way farther off the subject than you did and, anyway, your post was entirely appropriate. Our mental state certainly affects us all in different ways and stress of any kind makes our symptoms much worse. We've all felt the need to vent and here is a good place to do it. Please feel free to do it any time you need to. Just putting things into words sometimes help sort them out and we're willing to listen.
I hope your trip goes as planned and that you are back next week to tell us about it.
Virginia in AL
Re: thanks again for your concern
don't worry, when i first posted on this bb it was because i was really feeling bad. and all the replies i got back were wonderful and i can say i have friends and they know exactly what i was feeling. they helped me when i was very depressed. just talking (communicating) with others who have been there or know more than we do is really helpful. so when i say go ahead and post when you need to, there will always be someone there to reply with good advice.
WHEN THE GOING GETS TOUGH THE TOUGH COME TO THE BB :)
BECCA IN SUNNY CALIFORNIA
Re:We're here to offer support
Please feel free to dump anytime that you need to. We all have our bad times and you sound like you have had more than your share of them. I hope that your visit with your daughter goes well and you can work things out however they need to be worked out.
I expect you back posting and not just lurking. We can't always answer all questions but we've got big shoulders and are real good at supporting each other. And we are interested and like learning about all kinds of things, as you have probably noticed.
Talk to you next Tuesday.
Shirley in AR.
Re: thanks again for your concern
Margarita, don't ever feel you need to apologize for "dumping." As Shirley said, our shoulders are wide ... they extend across the universe! We get off the BEB topic many times and it usually ends up being good for us.
I hope it works out for you to go to your daughter's graduation. That is bound to be an important milestone in your/her life. Please stay with us when you get back, or if you don't get to go. We're here for you, rain or shine.
Sally in North Idaho
Re: Bio's on each
I wouldn't know what advice to give you ... Shirley is more the medical expert around here ... but I do want to welcome you to the BB and say that I'm glad you decided to come out of the shadows and tell us a bit about yourself. Please drop in often and share whatever you wish with us. There will always be someone to respond.
Sally in North Idaho
Re: Bio's on each
Thanks for making me feel welcome.
Re: Bio's on each
Hi Folks, Well I think I am the oldie of the bunch, will be 72 in a few days. Begin having small spasms 6 years ago, it took 4 years for a correct diagnosis, have had 4 treatments of botox. I have spasms in left eye, and hemi facial spasms. I go as long as I can before botox injections, I don't like the side effects.Never wore contacts, have no idea why this started.Have been married to Ed. for 53 years, 4 children a girl and 3 boys, many grandchildren and great too.Live in Ohio during the summer and Fl. during the winter, that makes me a snowbird.Love to read, sometimes with one eye closed, I have many flowers, I love to play cards, many different games. We live in the country, I remember all those things like, outhouses, chickens, pretty feed sacks, those were the days, and you can keep them, give me comfort any day.Edith
kathryn (kathy) wray, age 50, divorced
Children are Sam Wray,28 and my daughter-in-law, Stacy Wray
1rst grandchild, Maxwell Wray, 15 mos., their son
Daughter Molly Wray,26
i had a mild case of BEB which progressed into a severe case, which i have now, with maybe some apraxia. I receive Botox injections every 6-7 weeks and take ativan and Celebrex to control the spasms, plus a multivitamin, a super B complex with c, and a calcium magnesium supplement.
my personal menagerie consists of Hercule, my 14 month blue parakeet, Jezebelle, a gray and white 8 year tabby who is living up to the expression "catty", and Phil, my computer programmer boyfriend of 4
years who is wonderful most of the time, except when he is being
stubborn; a condition frequently afflicting the male species. he also
is responsible for my lack of adding caps to sentences.
I am an artist, painting in watercolor, pastels and oils; all genres
excepting portraits. interests are many including cooking,reading,
nutrition, gardening and others i can no longer do. i was a full-time mother and homaker for most of my early adult life.
Stress relievers include music, walking, and yoga, and my church circle friends.
there,i don't like to describe myself that much.
--modified by kathy at Wed, Jun 06, 2001, 14:57:09
--modified by kathy at Wed, Jun 06, 2001, 15:12:10
Coleen - Age 48 Work as an admin assistant for printing company
Husband, Tony married 29 years
Children, Melanie Manages a hair salon and does hair, Tim in college majoring in Physics engaged to be married next May & Rita who is studying graphic design and engaged to be married next June. Yes 2 at one time.
Diagnosed in March. First set of injections in April. Not really doing much good now. Eyes are really squeezing shut alot now.
Dr is a neuro-opthal
First set of Botox 25 units each eye 8 sites each eye.
Other conditions include Fibromyalgia and am a 11 year breast cancer survivor.
Hobbies are reading, my husband and I are are working on a family tree and movies. Wish I could do more but at the moment with this and the Fibromyalgia I am tapped out.
Gotta go put heat on my back is really knotting up.
Hi, I'm Doris John, in Lawrence, Ks. I'm 61, married & have two daughters, two grand-daughters, one grandson. I think I've had this beb for app. ten years (maybe longer) but it took a long time to get it diagnosed. I get the botox A about every 6 wks. It seems to help. Some times more than others.
I really don't get much posting done on the bboard, but I do read it a lot & have got a lot of good advice from it. I have an elderly father that lives just around the corner from me, so help him a lot. I just lost my Mother the end of March, right after getting back from Hawaii. We had only been back a day when she passed on. We really do miss her.
I'm a retired nurse & have managed the family rental properties for about the last ten years. I gave up quite a few this past year so am down to ten. Thats great! My husband of 42 yrs is an insurance agt.
Just the two of us & our mini schnauzer (Sadie). She's our baby.
Good Luck & peace to all--
Glad to see you again, Doris. I'm so sorry your mother has passed on. It's heartbreaking to see our families starting to dwindle. Drop in more often if you have time.
Sally in North Idaho
Hi Doris, It is good to hear from you again. I'm so sorry to hear of your mother's passing.
Do post when you feel like it. Miniature schnauzers are so cute and full of personality.
Shirley in AR.
I'm male, 71yo, live in Palm Desert, in So. California. Married to a very supportive woman who went through everything with me.
I've had BEB since 1960, when no one knew wht BEB was; twice diagnosed incorrectly, finally got a correct diagnosis in 1990, just in time for FDA approval of Botox. I have managed to stay employed in the computer software business all that time, until retirement in 2000.
In 1990 I tried all the then-known drugs to treat the BEB with no success.
Botox was successful! Started on a 3-month schedule of 9 injection sites, now on a 6-7 month scedule with 5 sites.
I have been treated by 6 different Dr's, three on east coast (Boston, Baltimore, D.C.) three on west coast (San Fran, Santa Cruz, Orange Co.)
During the 40 years with this distonia I have experienced everything associated with BEB except the surgical route. I've been blessed to have really good Dr's and have worked with them to really understand BEB. I've been through Hell trying to understand what was going on in the absence of a correct diagnosis. So I have a great deal of empathy for anyone doing this for the first time.
Judy, put these BIO's in a safe place so they won't disappear into the bit bucket over time. They are immensely valuable.
very interesting story, lynn. i didn't know you were a man. it is encouraging to me that you have gone this long without surgery.
Re: Biographical Sketches . See top of thread ...
I'm just bumping this back up to the top of the BB so that others may join in.
Comparing with our peers is very helpful.
--modified by Moderator-JB at Mon, Jul 16, 2001, 15:51:52
Re: Biographical Sketches ...
Judy , I'm 70 years old. Retired but volunteer. Have blepharospasm and Meige syndrome. Take botox every 3 months and klonopin from a neurologist who is also a movement disorder doctor.
I have a question for you. How much klonopin do you take and how much neurontin? How does the neurontin help you? It seems like even with the botox and klonopin I am going down hill fast. Ann Doyle
Re: Help with meds
Can anyone tell me of any meds that they have found successful?
Re: Help with meds
Ann, You might want to click on the link below which will take you to an archived thread that was started regarding "what works and what doesn't". Quite a few people responded to it telling of things that they had tried and had helped them and things that didn't work for them. Just scroll down after the first post and additional posts to that thread will be there. You might find some useful information there.
Shirley in AR. If you have any questions about the information that you find there, just ask.
--modified by Shirley-Arkansas-USA at Tue, Jul 17, 2001, 16:06:22
Re: Help with meds
clonazapam, 5 gm twice a day helps me a lot. It makes me very relaxed, but if I stay busy I am able to skip the nap. If I fall asleep, I'll be out for an hr. or 2. Botox injections every 3 months only helps some. Taking deep breaths also helps. Joann
Re: Help with meds
i took klonopin for awhile but it stopped working , so now only ativan helps as well as celebrex for pain. i do not do well in hot humid weather however, so kind of have to wait for autumn when i hope things will be better with my eyes.
Re: Biographical Sketches ...
Ann, I take Klonopin .5mg three times per day. I am not sure how much it helps with the eyes but it sure does help with my Meige. Without it, I am awful. I can actually tell when I missed or am late for a pill. Last night I tried taking one before bed along with the Neurontin and found myself much better this morning. I am going to talk with the Dr. about changing it to four times a day instead of three. I Currently take both meds (Klonopin and Neurontin 300mg) at around 7:00AM, noon, and 6:00PM. I think that any residual kind of wears off by morning so it takes awhile to get going again the next day. That is why I think taking one at 11:00PM or so would help.
It is strange that you are asjking the question today as just this morning I was thinking about what I might be like if it were not for this web site. I actually first heard about the Neurmontin and the Klonopin on this site and asked my Dr. to prescribe them for me. I was taking other meds that were not helping me at all or were making me feel weird such as Artane.
As for the Neurontin, it is one of those drugs that they really don't seem to know how it works with BEB but for some of us it does. It may be a placebo affect who knows. My GP says that it is harmless so I continue taking it. ...Good Luck...Alan
Re: Biographical Sketches ...
Alan, I am going to ask my doctor about Neurmontin. I have tried Klonopin & Artane with no help except the Klonopin helped me sleep really well at night and the Artane made me feel confused alot. Of course my friends didn't think that was a problem as they thought I was that way anyway. My system dosen't tolorate a lot of medications. But think I'll ask anyway. I don't have a problem with a placebo. I figure if something helps, go for it. Is your big party coming up soon, and if so, are you ready?
Re: Biographical Sketches ...
Billie, I just sent out the invitations yesterday. We are up over 250 people so it should be interesting. The party is the weekend of the BEBRF conference which I am really bummed out that I cannot attend. I don't know if it makes any difference but I take the Klonopin and the Neurontin together. The artane did the same for me. I do find that the Klonopin makes me tired at times but it really helps...Alan
Re: Help with Meds
Thanks Joann, Kathy and Alan. Shirley that site was terrific. I shared it with a hemifacial spasm group and blepharospasm group. Goes to show how different we are. I found My worst ever thing to do. A couple of times a year, I like to take the grandchildren without interfering parents to an arcade. The blinking lights and the noise made believe there really is a hell and I've been trying to be really really good every since.
Re: Help with Meds
Ann, I didn't answer your original post because I am still searching
for a combo of meds to give me optimum results. But I had to respond
to this post about the arcade!! I had a similar experience a few months
ago when my folks were visiting from the east coast. I took them to
one of the Indian gaming casinos--between the blinking lights, clanging
bells, noise, smoke and whatever I had to get out of there almost
immediately. I left them to play for a few hours and came back. Gee,
it was kind of an amazing body shut-down experience. My eyes started
to spasm, my breathing went wild (I have breathing difficulties as
well) and whatever else!! Just had to share that.
Joanne M. San Diego, CA
Re: Help with Meds
that's pretty funny ann and this also relates to the sensory overload topic lately on this bb.