Re: medications survey
Botox quit working so I tried Artane. tI really made a big difference for the first month with my eyes except my short term memory was bad - but worth it. Then after a month it quit working for me and I had different side effcts that were too unbearable so I quit. Then I got Klonopin. Took it once and it didn't help, but then I read about the potential side effects and decided to not even give it any further try so I don't know if it would have worked or not for me. I have a friend who swears by Lorezepam and it makes her able to drive, however she has already had several surgieries so that is probably why it works so well for her. It didn't work for me. Shanasy - sick ofdrugs!!!!! PS About all the vits and herbs you are taking, try to take as many in powder or liquid form as you can. Often the binders in the pills work so well they don't break down in your body and pass thru unchanged.
Re: medications survey
Thank you for the story of your reactions to the meds. It is all so confusing and the foutain of hope is beginning to trickle.
I appreciate what you say about the vitamins and herbs. I will be more aware when I purchase the next "batch." Again, Thanks for your response. Linda
Re: medications survey
Where in CA do you live? I just moved from there a couple of years ago. Now I live in "Nowheresville", IL I had lived there 20 years. Just curious!Shanasy, missing CA BAD!
Re: medications survey
Amazing ! I live in "Nowheresville" CA!!!!! Actually, Santa Maria is in the Central Coast, a laid back farming community about 75 miles north of Santa Barbara. Where did you live?
We are such interesting creatures - I can't figure if I miss the east/midwest (Ohio), or if it is just my family I miss. I love our weather - 60-75 degrees year round. I do not miss the cold and snow. And I enjoy living in a smaller community, although it is growing rapidly. My husband and I tease each other - when he sees the Pacific, he says "There's MY ocean." And I refer to the Atlantic in the same way. Take care! Linda in CA
Re: medications survey
Linda, I do get BOTOX injections but also take medications. I have also had an upper limited myectomy a year ago.I take Klonopin .25mg in the morning when I get up and then again around noon. I occasionally take a third dose in the late afternoon. I have only noticed minimal short term memory problems with this dose. I feel that this helps with my stress level and also helps with the eye spasms. I also take Benadryl (diphenhydramine hydrochloride) 25mg to 50mg, two to three times a day. In the morning when I get up, around noon and in the late afternoon. If I'm not having such a bad day, I may only take 25mg at a time and may leave off the late afternoon dose. I vary it according to my symptoms. I feel that the Benadryl helps to open my eyes (something that the Klonopin doesn't do) and also seems to help with the light sensitivity and also helps relax spasms. I have tried Parsitan, Baclofen, Scopalamine and Artane without success or due to side-effects or just ineffectiveness for my symptoms. Hope that this helps. Shirley in Arkansas BEB/Apraxia
Re: medications survey
Thanks, Shirley, for the comprehensive overview. I know everyone is different, buy I am hoping to find some commonalities that point me in some direction other than going in circles like I have been for the past few months. Since the Klonopin has help my meige, I hate to give it up, but would really like to find something that would open the shades and allow me to see more of the world than I have been lately.
My neuro isn't ready to refer me for Botox yet, so I will ask about using benedryl. I get fairly sleepy with it, so I would need to be careful - at least until the body adjust. Thanks for responding. it is nice to find friendly, knowing voices in the midst of a rather uncertain time.
Re: medications survey
Hang in there Linda. I'm a little surprised more people haven't posted to your question. Give it a little more time and I bet some more people post about their medication experiences.
Has your neuro said why he doesn't want to try the BOTOX yet? If I could just do the BOTOX and not have to bother with the meds, I would jump at that. Some people only need the BOTOX. Just in my own personal opinion, I think that BOTOX is safer for us than all the other prescription medication that we put in our bodies. Wish that I could function without it.
BOTOX generally is the treatment of choice unless your symptoms are extremely mild.
Is your neuro a Movement Disorder Specialist? Shirley in Arkansas
Re: medications survey/Linda
I'm with Shirley in this one! I have taken the klonopin for a couple of years, but it stopped working on my eye spasms. I then switched to lorezapam and after awhile that stopped working, so now I take the brand form of it (Ativan). I have been off of both of these before and my eyes were a MESS!! Unfortunately they have also been a factor in my gainig weght., but my eyes will not work without the ativan. I also have to take Celebrex as a painkiller, because I have severe pain at times in the muscle spasms. I am grateful for it, but am a little spacy and forgetful and lethargic if I take it every day, so I try and get off of it when I can. i also have to force myself to remember to take my vitamins. Sometimes my eyes improve with the b vitamin supplement. Sometimes. I am still taking the magnesium supplement, but not every day, because chronic pain and some of these meds can deplete your body of it.
--modified by Kathy in Atlanta at Mon, Apr 08, 2002, 06:18:09
Re: medications survey/Linda
I am enjoying hearing what works and what hasn't adn the side effects. I just realized from your post that the Klonopin probably had something to do with me putting on 6 pounds in a month!!! AAAggghhhh!!!
It is so confusing at times. Mostly the Klonopin works, but today the BEB/Meige was so bad that the doctor took one look and said "oh, my, it does get bad!" I didn't know whether to laugh or cry - but that happens to me alot lately. Do you thin the Celebrex has had any effect on the BEB/Meige symptoms?
Linda in CA - looking for answers.
Re: medications survey/Linda
I'm very glad you are doing this survey. I run out of energy alot.
I DIDN'T put on weight from the klonopin. That is one thing I liked about it. This could also be the fact that I was pretty much in shape after years of doing many , many aerobics, and just as you tend to stay thin for a while, it also takes awhile for the muscle to go.
I put on weight from the ativan. I'm pretty intense about keeping it at the low dosage i am taking, as increasing it was too much for me, it's very hard to get off of( going up and down on medication dosages is really hard on your system), and all i wanted to do was eat and sleep on the higher dosages.
The celebrex seems to uncramp my eye spasms, which for me are excruciatingly painful, stops the cycle of pain , and one can't help but wonder if you don't stop it, it only gets worse. It doesn't open my eyes however but seems to help getting them to open. I do try and not take it if I don't have to, because in combination with the ativan, I am as I said too lethargic and a little spacey. I have to right now because we are having very rainy weather. It's more important, I think to take it as the botox starts to take effect. After the 3 week or so period of side effects, I feel more comfortable cutting down on it, except for impending storms ( barometric pressure), such as now.--modified by Kathy in Atlanta at Tue, Apr 09, 2002, 09:50:34
Re: medications survey/Linda
Thanks for the input.
Linda in CA able to appreciate the sun today.
Re: medications survey/Linda
Is there someone in our group that is smart enough to make a website with headings of what helped with depression, eye closure. facial movement, pain, dry eyes tricks we us etc. with a warning statement that this is just our personal experience. Ann Doyle--not smart enough.
Re: medications survey
No, he is not a movement specialist - I would probably need to go to LA for that (as well as getting Botox). At least that is what the PCP's office said when I asked who my insurance would cover. This is a problem since my husband's vision isn't all that great after he had a stroke a couple years ago and driving in LA is not what I consider to be a fun experience when we were both seeing well. Of course, the BEB improves at times when my adrenaline is moving, so maybe I would be able to see well enough to drive. In fact, I might appreciate it so much that I might move to LA!! (definitely a joke).
My neuro is not against Botox, and if I ask nicely, he would probably refer me. That is one of the reasons I am hoping to hear about other's experiences.
How long have you been using Botox? How long did it take to find the right combo and method to have it be successful for you? How long does it last for you? and Have you notice building up a tolerance yet?
Linda from CA who continues to think of questions. Thanks for responding!
Re: BOTOX/Medications.
I've had BEB for about 3 years now. In the beginning, I wasn't offered any medications to take for it. I was told that BOTOX was the only treatment and medications did not work. I've been getting BOTOX injections since July of 99. At that point, my eyes were squeezing so badly that I was unable to function. I couldn't walk down a hall without trailing my fingers along the wall. I was constantly falling or running into things or tripping over something. I basically just sat around or laid around to keep from hurting myself. I was a mass of bruises. I was having horrible headaches from the squeezing. My symptoms progressed very rapidly from minimal symptoms for about 6 months to severe symptoms over a period of 2 to 3 months.
The BOTOX has never done anything to open my eyes but it does relieve the intense squeezing. In the beginning, I got the injections every 6 weeks. I then changed doctors and got the injections about every 8 to 10 weeks. I have noticed no decrease in effectiveness.
I've changed doctors several times and also had surgery so am still working on getting the dosage and sites right. The doctor that I am presently seeing has only injected me on two occasions so we are still tailoring things. I have learned to be patient although it is still frustrating at times. I do believe that some people go in and get their injections and everything works out fine. They probably don't have much of a need for this bb, though.I personally don't believe that there is a major problem with building up a tolerance to BOTOX at the dosages that we get. I believe that they are still determining that. I know at the yearly conferences, the doctors that do the presentations rarely see antibody formation and don't even test for it anymore as they never saw it happen. People with other forms of dystonia that take much higher doses of BOTOX are more likely to develop a tolerance to or develop antibody formation. I might suggest to any new people out there that the audio tapes from last year's conference are available and cost $35 for the entire set of 10 tapes. They are well worth the money. I have purchased the last 3 sets even though I attended the last two conferences. They are a wealth of information and were invaluable to me the first year that I developed BEB. They are basically the entire conference on tape. The doctor's presentations and patient question and answer sessions are all included. I'm also sorry if I sounded critical of your doctor or you not trying BOTOX right away. I would have tried medications first if I had known that I had that option at the time. Even though I'm a nurse, I had never heard of BEB before nor had any of my nurse friends. If it hadn't been for this bulletin board, I'd probably be in the looney bin. In saying that I would have tried medications first, I also know now that it wouldn't have been enough in my case and I would have quickly gone to the BOTOX anyway. But you certainly know your symptoms better than anyone else and need to go about this in what ever way you are comfortable with. Keep asking questions.
Shirley in Arkansas with BEB/Apraxia
Re: BOTOX/Medications.
Dear Shirley:Boy, can I ever relate to your ordeal. I was functionally blind for seveal years beause the Botox did aboslutely nothing for me and thenthe approximately 10 kinds of medications I took had side effects which made it impossible for me to keep going. I know that every person is different and that you have to take the advice of your doctor but at one point,I became so frustrated that I decided that I was going for the Myectomy sugery for the upper eyelid muscles. The surgeon , Dr. David Jordan of Ottawa, Canada, did a full upper Myectomy plus a Levator Advancement for the Aprixia which has given me a new lease on life. About six months later, my Oramandibular in my face, neck, throat, and vocal cords got more aggressive making my head bob all the time in addition to the facial spasms, difficulty chewing and swallowing, etc. Dr. Jordan sent to a Neurologist with whom he often works and in addition to the Clonazepam which I was taking, she gave me some Kemadrin which has improved my quality of life where I can now drive my car again and do many of the things I could not do before. I want to make it plain that what has worked for me may not work for someone else but between the surgery, medication and my FAITH, God has given me another chance.I am 55 years of age and truly believe in the Power of Prayer. Hope you find the right combination which will give you the relief you deserve. Marcellin Chiasson, Port Hawkesbury, Nova Scotia, Canada
Re: Surgery.
Hi Marcellin. It is always good to hear from you. I'm happy to say that so far (fingers crossed) I have not had any progression of symptoms since my surgery a year ago. In fact, the head turning and lower facial movements and grimacing and teeth clenching rarely occur any more. They pretty much stopped when I had the surgery and only occur when I am having tremendous difficulty getting my eyes to open. My husband always told me that it seemed to him that I was doing those things in an attempt to get my eyes open.
The Klonopin and Benadryl also helps.
Take care Marcellin,
Shirley Barr
Re: BOTOX/Medications.
Shirley:In the message I just gave,I forgot to include two important items:
1. The Myectomy survey means that so far since May of 1998, I have not had to take any Botox because Dr. Jordan removed all my upper eyelid muscles.
2. The Kemadrin has some side effects which mean I still can't go back to work. The side effects include a bit of confusion at times, drowsiness at time and most of all, short term memory loss (Maybe I would have developed those things even if I had not taken any medication. Who knows?) All I can say is thank God for the improvement since my Myecotomy and the Clonazepam and Kemadrin. Marcellin Chiasson, Port Hawkesbury, Nova Scotia, Canada
Re: BOTOX/Medications.
Marcellin,
Thank you for sharing you story. All of the stories are helping me to gain a better understanding of what to expect from different meds, including Botox. My mother read the material from BEBRF and called to ask why I don't just go have surgery. What I am learning from this survey is that we all have our ways of approaching BEB treatment - and it is helping me to sort out the options. Thank you!
Linda in CA
Re: Surgery no cure
Hi Linda, Just tell your mother that surgery is a permanent treatment option and not a cure. You will still have Blepharospasm to some degree after any surgery is performed. The surgery permanently removes muscles from around your eyes. There are probably only a handfull of surgeons that are very good at the myectomy procedure and results weigh heavily on the expertise of your surgeon, your anatomy, your degree or severity or type of symptoms that you have and luck.
Any doctor or surgeon that is very knowledgeable about BEB would not do surgery on you at this stage of the game for you without trying other things first. If one does, you should run in the other direction as quickly as possible.
And what if you are one of those 5 to 10% that actually do go into remission a year or some down the road? Surgery may sound like the best course of action to your mother but it needs to be considered very carefully and should not be entered into lightly or without checking into all your other options. And anyone considering the surgery should check out one of the video tapes available on the surgery from the BEBRF. They are not for the faint of heart.Shirley
Re: Surgery no cure
Shirley, I think my mother just wants an easy solution and for me to "get over it." I know that it is frightening for those who love us to see us struggle, so I am not saying that in a mean way. However, I think I mya get the video and make a copy and send it to my mother, who will most likely change her ind immediately when she sees what needs to be done. : - ) Thankds for the information! Linda
Re: BOTOX/Medications.
Marcellin, I do still have to take BOTOX. My upper eyelid muscles were also removed but I continue to have pulling from my forehead and lower lids over to temple areas where I still get the injections. It is a relief not to have that pulling from the upper lids, though.
We're all different.Shirley in Arkansas where the sun is shining
Re: BOTOX/Medications.
Shirley, when the myctomy is done they take out all the muscules? right? do your eyelids just fall closed or do they stay open?
Re: muscle removal for myectomy
Hi Cindy.
They remove selected muscles. Doctors vary on what they remove and how much. Enough muscle is left to allow you to open and close your eyes. You do still have control over opening and closing your eyes.Below is a link to Dr. Anderson's description of his surgery.
Similar articles have been in the BEBRF newsletters. I believe that Dr.Patrinely did the last one and there was a diagram. http://www.blepharospasm.org/99anders.html Shirley in Arkansas who has posted so much today that I'm liable to go over my limit. I hate it when that happens
Re: BOTOX/Medications./Shirley and Linda
This is an interesting approach, however. Do we know of anyone who only takes the medications effectively without the Botox?
Re: BOTOX/Medications./Shirley and Linda
Kathy, I don't know of any with the exception of a few people that have said that they are trying to do without the BOTOX. I can't think of anyone offhand on this board that has gone for any prolonged amount of time without the BOTOX. A small number of people that have had surgery have related that they no longer need BOTOX.In Japan, before BOTOX was approved there, they treated people with medication only. Mexiletene was one of the drugs that they had good results with. After BOTOX was approved for use there, most everybody then opted for it as the treatment of choice. I would think that mild cases of BEB could be treated successfully with medications only. I don't know of too many "mild" cases, though. Shirley
Re: BOTOX/Medications./Shirley and Linda
I didn't think there were that many that could get by on the meds alone, except for as you say , the "mild" cases.
Re: BOTOX/Medications./Shirley and Linda
KathyHi, i'm one of those who has reasonable control of BEB without Botox. Botox was totally useless for me and I have managed to sustain reasonable results now through the use of Isoptin (calcium channel blocker). with the Isoptin the eyes are pretty good after about 45 minutes and stay open providing I do not try and do anything that requires constant close focus eg reading or using the computer. I can actually feel the eyes starting to shut now after 30 minutes of reading the latest posts and doing this reply. Maybe looking at BEB as a vascular problem could do with a bit more research??? Scott in Tasmania
Re: BOTOX/Medications./Shirley and Linda
wow, that's interesting. I'm glad it works for you. Do you know of anyone else that this helped? where is Tasmania?
Re: BOTOX/Medications./Shirley and Linda
Kathy, don't you know about the Tasmanian Devil? Or did you never watch that cartoon? I don't but my sons and grand-daughter know him. I think it's in Australia ... right, Scott?Sally in North Idaho who is never real sure about geography. I may be excused because countries keep changing!
Re: BOTOX/Medications./Shirley and Linda
Hi KathySorry don't know of anyone else on this. I am only on it because of some fairly lateral thinking form my GP which started when one of his other patients presented with an abdonimal migraine - from theer we moved in afairly cicuitous route to the Isoptin. I do sometimes get some short term relief from Nitrolingual spray which is handy if I'm stuck somewhere. As far as Tasmania goes it is awonderful island state of Australia - down the bottom end. Population of almost half a million, and scenery you would die for. I'm probably a little biased but it really is God's own country. I live in the capital Hobart (2nd oldest city in Australia) but spend as much time as I can at my holiday house which is about an hour and a half drive at a beautiful 3 km beach which more often than not is deserted. there are some great pics/videos and more info on the web page below if you are interested Scott in Tas.
Related link: http://www.discovertasmania.com.au/home/index.cfm
Re: BOTOX/Medications./Shirley and Linda/Scott
Looks like a fascinating place!!! How on earth did you come to live there? Have you actually seen a platypus?
Re: BOTOX/Medications./Shirley and Linda/Scott
HiIt is a great place. I was born and bred here - just lucky I guess. I haven't got any intention of living anywhere else. As far as the platypi ( I think that's the plural) I saw a couple in the wild many years ago but have only seen them in zoos since. They are a strange creature!
Re: BOTOX/Medications./Shirley and Linda/Scott
I'm sure they are amazing to see. What a neat place to live! How long have you had beb?when did you first notice it?
Re: BOTOX/Medications./Shirley and Linda/Scott
Hi again!Have had BEB for nearly three years. Noticed it pretty well straight away as i went into total closure of left eye and partial of right eye. Can't remember having a lot of the symptoms that others have talked about with light sensitivity or dry eyes or even the blinking.
I was lucky? to have it diagnosed within about two weeks of onset as I was 'presented' at a weekly meeting of neurlogists in Victoria(another Australian state) to try and get a diagnosis for the left side numbness that I had been experiencing for a couple of years. Still no answer for the numbness but one of the neuros there said "He's got blepharospasm" and things have proceeded from there. If only the treatment had as been as decisive as my diagnosis. Enough of that now - where are the pictures of Atlanta???
Scott in Tas
Re: BOTOX/Medications./Shirley and Linda/Scott
I don't have any but I could take you their in my mind's eye with my memories. the Botanical gardens are rather fabulous with a lot of history: they actually have a composite interior garden of the world's climates for the more rare and fascinating plants. They had a poison dart frog exhibit several years ago, shortly afterwards someone broke in and kidnapped one of the frogs. Noone knows whatever happened to him.
The zoo is quite fascinating also, altho i have never been able to see a panda. They had a famous birth of a gorilla there and quite a lot of publicity; the females were right next to the cage with their adorable newborns and not at all shy.
Everything here is huge and growing, it's quite hard to get around in. I have been to a brave's game, actually caught a ball, but that was a long time ago. Chastain Park gives wonderful outdoor concerts , you can bting a picnic dinner complete with wine and candles and table setting, if you're so inclined. atlanta is a fairyland of beauty in the springtime with all the flowering trees, those with allergies have a hard time with this.
Re: BOTOX/Medications./Shirley and Linda/Scott
The High Museum of Art has also had many very interesting exhibits, among them a Matisse retrospective and most recently a joint exhibition of some newly acquire Monet paintings along with an American artist, Winslow Homer. there are many, many smaller art galleries also in certain sections of the city. Naturally, I have not seen alot of these as I don't get around much.
--modified by Kathy in Atlanta at Tue, Apr 16, 2002, 16:21:25
Re: BOTOX/Medications./Shirley and Linda/Scott
Educate me please! What do you mean by a Matisee "Retrospective"?
Pippa..who likes looking at paintings too, but doesn't know too much about them.
Re: BOTOX/Medications./Shirley and Linda/Scott/Pippa
A retrospective is a collection of an artist's works throughout their lifetime. Henri Matisse was a very prolific artist who was a master of line, color, drawing, design, and abstraction, also dabbling in sculpture, which i do not care for(I mean his). Monet, Van Gogh, Georgia O'Keeffe are just some othe artists that have had retrospective exhibitons. Sometimes galleries highlight a specific period or body of work in some of the major artists, Such as Picasso's "Blue " period, or Monet in london, or van gogh and cezanne in Arles, France, when their works are so extensive and they have traveled alot. These then are not retrospective exhibits but a specific,specialized one.
Oh I forgot to mention the atlanta Symphony is also very good here, They have also undergone a alot of change in their leadership. there is quite a lot of music here, in every genre.
Re: BOTOX/Medications./retrospectives/pippa
Some retrospectives are only representational, while others are complete. Galleries and museums would be hard pressed to have room for an atrist's complete body of works. That's why art books often contain a more complete collection of a retrospective. A retrospective is basically 'A look backward on an artist's life". I'm sure this is far more than you wanted to know, but sometimes i get carried away on a subject.
Also many artists try many different genres in there lives, such as photography, design, sculpture, etc.
I'm sure many are familiar with georgia O'keeffes flowers and skull paintings towards the latter part of her life, but she also did many cityscapes and recently i saw some of her "mindscapes" or dream paintings which are visually spectacular fantasies of color and shape.--modified by Kathy in Atlanta at Wed, Apr 17, 2002, 13:46:42
Re: Thanks for art lesson, Kathy
Kathy, you did a great job of explaining things of art to us. Oh the wonders never cease of new things that we learn (and all for free!) here at this site!I took a couple of art appreciation courses in college and enjoyed them a whole lot. I envy people who can express themselves on a canvas of drawing board. Sally in North Idaho who can't even draw a very good stick man.
Re: Thanks for art lesson, Kathy
Stick women are easier; they have more parts.
Re: BOTOX/Medications.
Shirley,
I did not think of your response as critical, just caring and sharing what you had found to work best for you. Having just been diagnosed, I am definitely looking for lots of caring and sharing. I think it is good to have differing ideas and to listen to a variety of views and experiences, which is why I started this question.
I also highly recommend the tapes for those who were not able to go to the conference. I just have last years, but am thinking about requesting the previous years. Having people to "talk" with who understand is a saving grace that I will forever be thankful for.
Thanks for sharing your experiences. I can relate to the description of "feeling" one's way around in the world. Since last November the spasms have gotten much worse for me and I'be fiven uyp driving in the last month, so I will keep on trying almost anything to find some relief from the spasms and the closed shades..... Linda in CA thankful for Shirley's response. ;-)
Re: BOTOX/Medications.
Dear Shirley,I am so very sorry that you had and still have to suffer such severe symptoms of BEB, and I hope and pray (no empty words, I assure you!) that you WILL find a solution to your problems - and soon. Your experience in the field of medicine will make it easier to recognize the value of available options. Hopefully, one or some of them will, eventually, help to return positive quality of life for you. Dystonia attacks everyone in different ways. In my case BEB may effect me less severely because it started later in my life. This still allows me to engage in a few of the many outdoors activities we used to enjoy, all of which provide stress relief, stress being such a big factor in triggering severe spasms. I don't think "...everything works out fine..." after btx injection applies for anyone with BEB. They help to function better, but in my case the rapid work of that woodpecker in my head still drives me crazy, Botox or no Botox. My oromandibular dystonia, however, is a totally different story. It does make my life miserable beyond belief. But, as I said, that's another story - for another time, because I do need and will stick with the bulletin board - thanks, Judy. My hugs go out to you, Shirley. Get better soon, okay. Somewhere, somehow there's got to be a solution - for you as well. Since time never stands still and research continues, there will be more alternatives available. Be patient a little longer. Gisela
--modified by Gisela at Tue, Apr 09, 2002, 15:49:04
Re: BOTOX/Medications.
Gisela, don't go feeling too sorry for me. :-) The severe symptoms that I was describing were in the very beginning before I was able to get any treatment at all. The BOTOX does help and the upper myectomy improved things also. I'm not nearly as bad as I was. But it has taken the combination of the surgery, BOTOX and medications to let me be semifunctional. I still have to occasionally hang on to my husband when we go out (not such a bad thing) and I don't crash into things nearly as often. Hubby moved a recliner in the living room though and I've run into it twice in the last two days.
I've also just adjusted to having BEB. I cook and prepare meals when I can and when I can't, we go out to eat or hubby fixes something. Same with laundry and shopping. Most everything revolves around how my eyes are doing on any given day or any given hour. Family and pets have also learned to get out of my way in the hallways or by the stairs as they know that I may or may not see them at any given time but may simply proceed as I know the layout.
The newspaper was always a frustration for me as I couldn't read it and they would stack up. I cancelled the daily paper and just get a Sunday addition and sometime through the week I whip through it and hit the headlines. We have modified our lifestyle to make things easier for me. I've learned what I can and can't do. It is just difficult to make plans for things.My comment about getting the BOTOX injections and everything being fine for a while is just based on talking with several people in my area that have gotten BOTOX for years for their BEB. They have related to me that they do go in and get their injections every 3 to 4 months and within a few days to a week, their spasms are gone and they are virtually symptom free until the BOTOX starts to wear off again. All of them are retired but they do still drive and they say that things are pretty much normal with only a little extra blinking or light sensitivity. In saying this, I know that this is not the case for most people but just a matter of everyone is different in their symptoms and how they respond to the BOTOX and medications. I do appreciate the hugs and support and I will keep looking for myself and for others.
Re: BOTOX/Medications.
I am glad, Shirley, that you have learned to manage so well, despite existing problems, and I congratulate you and everyone else on having such understanding and helpful hubbies or any other support person - a definite blessing for everybody.
I've never met anyone with BEB (haven't met many tough) who is symptom free and am really happy to hear that I was wrong - so good for them.You have helped and comforted so many of us on this bb with advice and support (I think we all read everyone of your posts with genuine interest)that it comes natural to feel a sincere desire to return some of that kindness. I shall continue to wish you well, Shirley; it's not meant to be pity. We can only hope that everyone on this board will experience some improvement of their symptoms sooner or later. Another sincere hug for you and God bless. Gisela
Re: BOTOX/Medications.
Thanks Gisela. You just took me out of my "caregiver" role for a short time and I seem to always have problems being the one comforted. I guess I never figured out how to graciously accept it. I'm more comfortable in my little caregiver shoes.
And I did not want you to have the impression that things were as bad now as they were in the beginning.
Shirley in Arkansas alias Mother Chook
Re:self pity
Why is it that so often when we tell people that we've learned to "accept and adapt to" our limitations, it is taken as being a form of self pity? My mother is forever telling me that I sit in my house feeling sorry for myself and wallowing in self pity. NOT TRUE. I am not a socializer, as she is, but I do go to a few things when I feel comfortable doing so, and I'm actually rather proud of myself for adapting my life to deal with this uncontrollable, incurable disorder that I didn't ask for.I might feel anger and frustration at times, but I honestly don't think that I moan the old "why me" question about the changes in my life. Aren't we supposed to take our lemons and make lemonade or pie? Sally in North Idaho who really needs Botox again and had a very tiring trip to Spokane.
Re: Re:self pity
Hi Sally. Have you been sitting around feeling sorry for yourself again? :-) Only kidding.
You know that I don't think that you do that. It's just your mother doing a "number" on you. I'm not usually a social person, either. I can be but usually I'm a major home-body.
You should be proud of yourself. You do a lot for your family and also do some volunteer work. I think that you've done quite well with all this.How long till you get BOTOX again? Shirley in Arkansas who thinks that Sally is one of the most kind and caring people that she knows.
Re: Re:self pity
So do I, Sally. I think you are very upbeat and positive about life from what I have seen in these last few weeks since I joined. So you are coping extremely well with what life has thrown at you, and getting on with life in your own way, and have been an inspiration to me. Don't try to change and be more sociable outside if that is not your normal nature, because it will only put additional pressure on you..and make your symptoms worse. It is disappointing when others don't appreciate just how brave we have to be to go out socially. They don't see us mentally girding our loins so to speak just beforehand and how many adaptations in our characters we have to make to adjust to this BEB life. There is a fine limit to what is good for us (ie not shutting ourselves away) and overdoing the emotional resources. I am still trying to find out what that is through trial and error. Yesterday I had a bad day and realised that I had been doing too much and was therefore paying the price for it. I am learning that I have to pace myself a lot more. Perhaps your mother, who after all has your best interests at heart, (I hope!) would be more understanding and get off your back if she saw some of the messages on this site occasionally to help her understand just how you are not alone in how you are reacting and that she ought to be proud of you and what you are achieving.
Pippa..... getting off her soap box now.
Re: Re:self pity
Thank you, Pippa. Thing is, my mother had this disease/disorder and is always reminding people of that, but she doesn't seem to want to accept the limitations I have. I want to sail away to bonny Scotland and see all those beautiful daffodils and smell the fresh sea air. Sally in North Idaho who might sail off to Scotland. Anyone else want to go along?
Re: Re:self pity/Sally
I would, but I'm pretty sure my eyes would be bad there. That's why I can only read about those far off places.
--modified by Kathy in Atlanta at Thu, Apr 11, 2002, 06:36:57
Re: Re:self pity/Sally
Also i get very down from gloomy constantly overcast weather. Very.
Re: Re:self pity
Sally, count me in on the trip to Scotland with Colleen and Kathy.
My eyes don't shut down as much as you so I can help there. Of course
I sound like a workhorse with my breathing but we could probably complement each other very nicely and have this thing work out. Great
idea, Sally. Joanne M. San Diego, CA
Re: Re:self pity
Thank you for the kind words. I am blushing! I get Botox next Wednesday.Managed to drive the worst road in Idaho today to take my mother to the dentist as she broke a tooth on Almond Roca. I have avoided that road and haven't driven it for at least a year and a half. It went okay. Dentist could only grind off rough edges as it was too risky to try to do more because Mother is in a very precarious situation with her congestive heart failure right now. Her protime level has roller-coastered between "bleeding to death" level and "stroke alert" level for the past couple of weeks. It's been hanging right in the stroke
zone for the last week and won't move. She is scared, but not wanting to give up all her doings. I've been taking supper to her every night to be assured that she eats at least one meal a day. She will be 85 in June, and is very active and spry. Sally in North Idaho where it was a pretty day.
Re: Re:self pity
Sally I wouldlove to go to Scotland.Maybe Ireland too.
With a name like mine they would think i was Irish
Hope everything goes ok for your Mother.
Colleen Milligan in IL Who thinks that Sally is a kind and very loving person
Re: Re:self pity
Hi Sally,I don't think you are feeling sorry for yourself. You seem like a pretty neat lady to me. I for one enjoy reading your posts.
Also, if you decide to go to Scotland I would love to go too. Actually I've wanted to go to Ireland since I was a little girl, but Scotland would do. I am dealing with a lot of stress right now, and a trip somewhere sounds great. Billie in Kansas where Spring is here and I love it.
Re: Re:self pity
Hi Sally, Others always see us diferently than we see our self. I try to be positive and up beat too but I must confess I do give in to self- pity once in awhile. But hey, we have the right to, don't you think. THEN WE GET OVER IT. If we had another type of disorder/disease wouldn't we feel entitled to indulge in a day of self pity. Those who don't feel at least a small amount of self-pity just are not being truthful about themselves.I think our circumstances cause us to have those days of self-pity because our friends/family don't understand the nature of this disorder. Kathy in Atlanta said it so well the other day: "People only care for a short time. This is a long term condition." Sally, you just don't know how much you brighten my day by just sending me those wonderful e-mails. Some are uplifting and some are just plain funny. It always is good to laugh. Joyce in NC who is feeling much better. The sun is shining, the birds are singing and all is well.
Re: Spring
Thanks to all who sent me kind words. I may not deserve them, but do appreciate them.Isn't Spring wonderful for uplifting spirits? Here in North Idaho it is beginning to arrive. Rainy today, but we've had sunny times, too. The wild Easter lilies and buttercups are blooming, soon to be followed by other pretties to brighten our lives. With all the moisture we had this winter, I'm hoping for a brilliantly green spring. Just so the hot weather doesn't come too soon and shorten all the beauty. Sally in North Idaho who has babbled on too long like a brook.
Re: Lemons and lemonade
Sally,Another good use for those lemons would be throwing them as hard as possible at the wall and screaming at the top of your lungs "It's my disease and I'll do with it as I see fit" to reduce stress and frustation. (I'm in my Tawanda mood) Even better, why don't you throw them against a large canvas and call it modern art? Maybe add some oranges and strawberries for color and texture? I can just see the collectors now asking "just what is the artist trying to communicate, or is it art for the sake of art?"
There aren't any rules with blethro, so why should there be any rules for how each of us deal with it? We all need to get to our own comfort level and move on from there.
And yes, spring is just wonderful. Here in Maine it's staying in the fifties mostly and the grass is beginning to turn green. Can't wait for the flowers. My dog Sam,is loving too. He justs goes out on the deck and sniffs the air, for hours. He gets that goofy smiley dog face that makes me laugh - now dogs know how to enjoy life.
Take care
Denise
Re: Spring/Sally
Sally, say a 100 times: "I DO DESERVE THEM !!" and believe it.Christel in Ca. just lurking these days
--modified by Christel-California at Fri, Apr 12, 2002, 09:23:30
Re: BOTOX/Medications.
Shirley, you make me feel so good. If I could get more Botox and oftener I feel like I could be a human being again.
It's only been 7 weeks since the last shot and already people are aking;"Are you all right?" I have often felt if they ( the doctors Had it they would be more agreeable). Bouncing off the walls. Ann Doyle
Re: BOTOX/Medications.
Ann, I know I mentioned 3-month intervals for botox in my earlier post, but there are several on this bb who get injections every 60 days.
I did that once and would rather be able to wait the 3-month period
that is generally recommended. I have also heard that if you are
getting higher amounts of toxin (200-300units) it is better to wait
the 3-month period. We are all different so what works for one doesn't
necessarily work for the other. So, if the doctor will agree to a
request for injections more often, it may be worth a try. As you know, there are also those who don't get much relief at all. Sorry to hear about the progression you mention. What a challenge we all face!! Joanne M. San Diego, CA
Re: medications survey
Linda
sorry I'm probably too late for your neuro appointment but for what it is worth I am having great success with going down the vascular route. Thanks to the determination of my GP I have had pretty good results from using Isoptin (Calcium channel blocker).It was interesting to read one of the articles from the foundation that the drug of choice in Japan before Botox was one of the same family????
My eyes are closed every morning but open with one 240mg tablet each morning and generally stay open unless I undertake activities which involve close concentration ( reading 1 hour; computer 30 minutes: driving 2-3 hours). so as you would imagine I tend to avoid these activities which is why I have'nt posted much lately. My doc is convinced that it is vascular and can be treated by the nitrous oxide group so the next thing he wants me to try is Viagra - will let you know how it goes when I am game enough to take it!!!!
Scott in Tasmania
--modified by Scott Harvey at Mon, Apr 08, 2002, 08:20:30
Re: medications survey
Hi Scott. Glad to hear that the Isoptin is still working for you. I wish that I had gotten more feedback about it and similar drugs at the conference but I just got a vague response of "everything works and nothing works".Someone, I believe, is doing a trial or study on Mexiletine in the US right now for Blepharospasm. I think that they mentioned it at last year's conference. It is a form of oral lidocaine now being used as a cardiac anti-arrhythmic agent. This might be the drug that you are talking about with the Japanese study. It sounded promising. Maybe we will hear more about it at the next conference. Viagra, huh? Do let us know. We better have the censored version, though. ;-) Shirley in Arkansas
--modified by Shirley-Arkansas-USA at Mon, Apr 08, 2002, 20:28:31
Re: medications survey
Your message came after the neuro visit, but I am thankful that you responded. I have come to the conclusion that finding somehting that will really help, may be a long process - so your info will be added to my list of possibles for the next visit. My neuro is willing to work with me and I decided that I would try other options and save Botox for later - may be partly my needle phobia, but also, my famiy's life expectancy is long - and I don't want to build a tolerance for Botox - as I have heard happens.
The Isoptin sounds interesting and because of the weird way that BEB acts - with increased difficulty with walking, yet better with talking - it made me wonder about vascular relatedness. I wondered if anyone had experience with be given oxygen and that helping. Before diagnosis, I told my doctor that my eyes felt like they weren't getting enough air - that was when he put me on Paxil!!!
I am hoping that more people will respond with a "review" of medications and how they worked to help specific symptoms.
The doctor suggested Neurontin today, so that is my next trial - I would like to hear from Alan about the amount of Neurontin he is taking. The Dr wants me to go off Klonopin until I see how the Neurontin affects me, then if I want to add Klonopin, he is open to that. As I said, it is a journey, not one I had planned, but I am thankful that I am not overly sensitive to meds.
THANK YOU for adding more information - I am curious about the idea of Viagra - I have heard of things having multiple positive effects - my husband will probably ask my doctor about this one!!!!
Happy thoughts!!!! Linda in CA
Re: medications survey
Hi Linda,
You had indicated in your posting,
'I don't want to build a tolerance for Botox - as I have heard happens."I have talked with my neuro about this specifically before I started my injections in January and he had said that if the injections were given earlier than 3 months apart then this was potentially possible. He also said he has been treating a patience with Botox for 11years now successfully.
Does anyone have any information on this to share?
Debbie from rainy Ontario, Canada.
Re: medications survey
My info came from listening to the tapes of the doctors that spoke at the BEBRF conference last year. So, maybe a good question to the BEB BBers would be how long have you been using Botox and have you found it any less effective with time?
Re: medications survey
Mine isn't as good each time but it is because the condition keeps getting worse. It started with just one eye and now is the whold face, mouth and throat. Ann Doyle
Re: medications survey
My doctor won't give them more than every 3 months either because he said you build up an immunity to it. Then I have read others say that it is a purer form now and ok to give it more often but recently read that it can vary from 80% to 120% pure Botox. All this is heresay and I have no proof . Ann Doyle
Re: medications survey
Linda,
I've been having Botox injections (220 units - 35ea eye, 75ea jaw) for 10 yrs. now and have not experienced any negative side effects. 10 years seem to be a long enough trial period for me to expect that this will continue. As long as three months (not less) pass between injection, I hope there won't be a toleranz build-up .
Since I don't tolerate drugs very well, Botox is my only option to control BEB, and it has always worked well for me.Gisela - from British Columbia (who's thankful to have Botox around)
--modified by Gisela at Tue, Apr 09, 2002, 13:26:31
Re: medications survey
Boy Gisela, am I glad to hear from you, I thought only those with severy dystonia got more than 100 units. That's what I am getting and I know I sure could use more. Early on my doctor said he'd rather give more at one time than oftener but I thout 100 was the limit. Ann Doyle
Re: medications survey
Hi, Anne, I attended a recent Botox meeting here in Kelowna. Since I arrived a little late, after introductions, I'm not sure whether one of the speakers present was a neurologist or if all four were ophthalmologists. Discussing dosages as well, naturally, they seemed to agree that 500 units are max. So I guess I'm somewhere in the middle there for a long time now. However, we have to remember that everyone reacts differently. I hope you find the right dosage that works for you. Gisela
Re: medications survey/Gisela
Thanks again. Good to know the max. I thought I was taking it. Now I'll really be more forceful next time. I just took it for granted that was it. That's why this internet is so valuable.
Our local paper recently had an article that said one third of the patients now go to a doctor with printouts from there computers. I don't blame the doctors, There is more and more information out there and they have more patients to deal with and papers to sign and less timeto spend with the patients or their families. i doubt they even have time to glance an the American Journal of Medicine or the equivilent from other countries (trying to be politically correct)/ Ann Doyle
Re: medications survey/Gisela
Well, Anne, I too am guilty as charged. If health related problems within my family concern us, we surf the Net, always! Although not everthing one reads there is reliable, a great deal is. When my husband had life threatening surgery, I took printouts that described the operation step by step to the hospital and showed them to his specialist (with two of theses fellows in my family, they don't scare me), and he confirmed what he saw - was even interested. This way we knew exactly what was going to happen which put our apprehension to rest.
So yes, I can believe that others also try to find information on health issues on the Internet.Take care, Gisela
Re: medications survey
Your approach with meds is a bit different from the way most of us do
this, but that's part of the nature of this disorder. As has been mentioned, the medical community is not overly concerned about developing antibodies to the botox especially if administered in 3-month increments and at lower dosages(100 units-)--your fear of needles is a different issue. One of the positive features of the botox is that the doctor can inject and isolate specific muscles that are spasming whereas meds affect muscles in the entire body--even the ones
that are behaving normally; hence, negative side effects. Since I have some meige and breathing difficulties which are areas more difficult to inject, I take meds, but consider them an adjunct to the botox.
If I could control this disorder totally with botox, I'd do it in a heartbeat. For meds, I take benedryl (25 to 50 mgs a day) and a
benzodiazapine(these can be habit forming) which is in the same family as klonopin called serax or ozaxepam. Since the benedryl is an anti-cholergic and also blocks the acetyecholine(substance that connects
nerve with muscle) as botox does, it is a great enhancement to the botox. The serax is an anti-anxiety which relaxes me enough and takes the edge off the lower facial spasming and grimacing and the breathing irregularities. This combo has enabled me to continue working. Good luck in your journey!! Joanne M. San Diego, CA
Re: medications survey
Thank you for your input. I have really obtained so much info from everyone's deifferent perspectives. Obviously, Botox appears to be a favored method, yet is does seem that other meds are need to help with all of the symptoms.
I started Neurontin on Monday and am hoping that the intial response to it will continue. One of the things it has helped with is the crazy breathing problem, which the Klonopin did not seem to effect. I actually was able to see today when I was in the car, and when walking around at work my eyes stayed open. I am hoping that it is in response to the meds and not just "a good day." A day at a time will tell. Again tahnks for sharing your experiences with meds. Linda in CA
Neurontin
Re: medications survey
I am in concurrence with Virginia. We are both having the breathing difficulties so be sure to give us Neurontin dosage and if the relief continues. Joanne M. San Diego, CA
Re: medications survey
He started me on 100 mg twice a day, today I added another 100 mg. He said I could go up to 200 mg, three times a day. I don't think I will need that much - so far - day four - I am energized (strange since it said might make me sleepy), feeling better than I have in a long time, with breathing and keeping my eyes open. It has not eliminated the spasms, especially in the lower part of my face, but it is much better. If you want to check in with me via email, that would be fine.
Linda in CA feeling good : - )
Re: medications survey
On my druggest printout of side effects of klonopin it said one of the side effects was depression. After 5 weeks on klonpin I became depressed and was put on zoloft for the depression . It worked. I notice there are others who take klonopin and also zoloft. However .25 mg is a very low dosage. This disease can be pretty depressing all by itself. Ann Doyle
Re: medications survey
I certainly agree about BEB/Meige being difficult and life changing and how it causes some depression all by itself.
If I go back on Klonopin, I am going to watch carefully for the depression. Depression is such a subtle thing that snakes its way into one's life aroung events that are less than happy - then add the fact that you walk around with eyes closed, thumping and bumping through the world. For me, not being able to drive has been one of the biggest challenges and humbling experiences. I have heard that it is good to be humble - so maybe some good will come of this.
I am continuing to feel better since being off Klonopin and starting Neurotin, but today was a mixed day - part good (eyes open) and part bad (eyes closed). However, there was a number of stressors today.
Have a good day, Ann!!!
Linda in CA
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