Re: First message
Good to meet you and glad you decided to post. It gives me hope when I find out someone has survived 12 years with BEB without killing themselves or someone else. Sorry the Botox doesn't last but 8 weeks. Will the doctor give it to you that often? Have your symptoms gotten worse or leveled off at some point?
Re: First message
Hi Delaine
Good to meet you, too. Yes, I can have it as often as 8 weeks IF the doctor is having a clinic at that time. He won't give it individually only in a clinic situation even though I have a whole vial to myself so there would be no wastage. This is very annoying as often when I need it he is not having a clinic for a few weeks so I have to wait. He is the only doctor in the entire state of Western Australia that does Botox. I would say my symptons have remained the same since day one. I sometimes wonder if I am becoming immune to it as I think it lasted a bit longer when I first started having the injections.
Re: First message
Welcome to the BEB bulletin board, Lyn. You are joining several from your country. They don't post all that often, but they are out there! My story is so similar to yours: all the eye tests and different prescriptions for lenses, which of course did not help. Then, step inside the door of the neurologist's exam room and voila: diagnosis of BEB/Meige! I, too have Botox every eight weeks, and have been for almost two years. I am up to the full 100 units now. It helps quite a bit, but has its ups and downs. I tried Neurontin but that turned me into a zombie. So I gratefully go for the needles; however, I am fortunate in that I don't find the injections extremely painful. They do hurt, but it is over quickly and I can endure that.Please tell us more about yourself ... whatever you'd like to share. Come back often as there is nearly always someone around to answer you. Sally in North Idaho
Re: First message
Thanks for the welcome, Sally - in - Idaho. I never had any medications - I went straight onto the Botox injections. I find the first one painless and the rest very painful but as you say, it is all over very quickly and the results are great. My doctor only does it on a clinic basis which means often having to wait longer than I would choose to have the injections. He won't do it on an individual basis and as he is the only doctor in the State that does Botox, there is not much option. I live 140kms from the city so it is a long return journey.I am the secretary of a local wildflower group and produce 6 issues of our newsletter each year, assorted brochures and a variety of greeting cards featuring local wildflowers. I find working on the computer quite beneficial as it seems to reduce spasms. The worst thing is driving. What is your situation re getting the injections - can you just make an appointment when you need it or is it also on a clinic basis?
Re: First message
I am a private patient of a movement disorder specialist neurologist and he makes individual appointments for everyone. When I finish one treatment, I make a new one for eight weeks later on my way out. That is very convenient. I can imagine your frustrations at having to travel so far and wait for a clinic to be scheduled.Your newsletter and cards sound very interesting. You will have to get acquainted with Dee Linde when she gets back on line (they are renovating a house and have been living in a camper for ages now, but supposed to move into their house the first of July and get "hooked up" again). Anyway, Dee makes beautiful cards from pictures that she takes out and about in the world of nature. Talk to you later. Glad you are with us. Sally in North Idaho
Re: First message
Hi Sally-in-Idaho
As I mentioned to Shirley in AR I have noticed that some of you are treated by movement disorder specialist neurologist instead of ophthalmologists. Your set-up sound ideal and just what I could use. I feel I am backsliding every time I need the injections and have to wait for a clinic. I don't even know if there are ANY movement disorder specialist neurologists in Australia, let alone Western Australia. I did see a neurologist before I was diagnosed - a waste of time - he hadn't a clue! Will look forward to getting to know Dee when she gets back online.
Re: First message
I have noticed that several of you mentioned that you get Botox every 8 weeks. My doctor will only give them at 3 month intervals. He says because they are a protein, if you have them more often, your body will get used to them and they won't work anymore. Mine often "run out" before the 3 months are up - I take meds to supplement.
Shelley
Re: Intervals between botox injections
Hi Shelley,
My movement disorder specialist (MDS) will give the injections to me every 8 weeks. Some doctors will even give them every 6 weeks but most prefer to go at least 8 weeks to 3 months between doses. They used to think that you would build up antibodies to the botox and it would no longer work. They just haven't found that to be the case and rarely even check for antibody formation anymore. I believe that it was in 1997 that Allergan changed the formulation of the botox and decreased the protein content tremendously. I posted on this several days ago but I can't remember exactly how much it had been decreased. I had been listening to the conference audio tapes and got the information from that tape of the Allergan rep.I would have been a basket case waiting 3 months. I notice that the squeezing starts to return in 6 to 7 weeks for me. By 8 weeks, I'm getting uncomfortable and at 9 weeks, I want to stay in bed.
Shirley in AR. My other post on this was from May 20th that is on page 9 right now. It was headed as Botox/Myobloc. They decreased the protein load by 80%.
--modified by Shirley-Arkansas-USA at Sat, Jun 02, 2001, 21:16:31
Re: First message
Hi Shelley,I am one who regularly has Botox injections every 8 weeks. I have asked my MDS neurologist (several times) if that is too often and he has patiently explained why it is not. Something to do with the rule of thumb being a certain number of units in a certain length of time. Anyway, it seems clear when he tells me, but I don't write it down and I forget. I just have to trust him. By the time the 8 weeks are up, I am READY for those needles!! Sally in North Idaho
Re: First message
Sally - I am never really ready for Botox. It is extremely painful for me. Is it for you?
Shelley
Re: Shelly
it is extremely painful for me also. in fact, i just had to take my own advice and take a B vitamin out of anxiety for my appt. this week. the good news is that it will be 7 weeks instead of 6 this time. i have some tylenol#3 that i have never taken before and am wondering if it is going to work and how it will affect me.
Re: Shelly
Kathy - by all means, medicate yourself! I hadn't even thought of that. I will be thinking of you..at least it goes quickly.
Shelley
Re: First message
Shelley ... It hurts and I usually cry on two of the sites, but it is over with quickly so I can endure. I have never used the EMLA cream that several of the others use prior to injections. It seems like more fuss and bother than it would be worth. I'm sorry the injections are so painful for you. I do quite often take Tylenol just before my appointment (NOT aspirin).Sally in North Idaho
Re: First message
Welcome to the bb Lyn - it must be getting cooler in Western Australia? I've had beb/meige for 6 years - botox (90 units) keeps my eyes open for 4-5 months, although I get a lot of side effects from them in the first month or so. I'll `talk' to you another time - but, again, welcome.June in Toronto
Re: First message
Hello June (my middle name !) - thanks for your welcome.Yes, yesterday was the first day of winter but the weather is still very sunny. Lack of rain is the big problem - we rely on rain water, we have a 20,000gal tank to fill. The next two months is when we get most of our rain so here's hoping. Have only had a couple of fires yet. You're lucky you can go 4-5 months even though you get side effects.My husband used to live in Hamilton, Ontario and also in Toronto. Lyn
Re: First message
Hi Lyn
i also have to have my injections every 6-7 weeks and have had to for about ten years now.
Re: First message
Hello Kathy Lovely to hear from you - sounds like your injections don't last very long either. Do you feel they don't last as long as they used to ?Lyn
Re: First message
no, actually it's about the same. Except for the early summer months when the sun is lower and brighter in the sky and wear off a week earlier. this has happened for the past 2 years. as we approach autumn then it's back to 7 weeks i hope.
Re: First message
Hi Lyn,
Let me add my welcome along with the others. We do have several posters on this bb from Australia. Maybe they will be checking in and saying Hi, too.
I know that you must have had a very frustrating two years of trying to find a name for your problem. It is a story that we hear over and over and sadly it still can take years to be diagnosed.
I was actually diagnosed very quickly by an optometrist after seeing him three times for what I thought was contact lens problems. I then back slid and went to my family doctor who thought that it might be a tic or facial nerve problem(kind of right) she put me on a cortisone preparation for a week and then sent me to an ophthalmologist who I saw three times. He thought I had an irritation from the eye drops that I was using and put me on a different kind. I kept mentioning Blepharospasm and he acted like he didn't even hear me. Finally said that I was too young (47) to have "that". He gave up and sent me to a corneal specialist who checked me for dry eyes and then agreed that I probably did have BEB but he didn't treat it. I had been reading up on it all this time and already knew more about BEB than the doctors I had seen. I asked for some oral medication to take to help me until I could see the "specialist" that gave botox and was told that there were no medications available that would help with BEB at all. It was a month and a half later that I finally got in to see the specialist for BEB but of course, he couldn't give me botox that day as he always paired people up for botox and always did two people at a time. Everybody got 50 units. No deviations. This was his tried and true method. Everybody got the same amount of botox in the same sites. When his regimented protocol didn't help me, he told me that I wasn't responding like his "normal" BEB patients and he wasn't sure anymore if I had BEB or not. He didn't know what was wrong with me.
I fired his a-- and found someone else. My husband now drives me out-of-state, a 7 hour one way trip and I get my botox from a movement disorder specialist who knows what he is doing and I have the utmost confidence in.I also have apraxia, so the botox has never really done more than stop the intense spasms. My eyes still did not want to open. I recently opted to have the upper myectomy surgery done with ptosis repair that involves removing excess tissue from your upper lids and tightening of the levator muscle which helps you to open your eyes. I'm 6 weeks post-op and most of the side effects from the surgery are resolving and I am beginning to see some improvement at this point. It is not a cure but hopefully will improve things for me a little. Sorry this is so long. I get too chatty, sometimes. Welcome to our bb. After 10 years, you could probably give me some advice. I've only been dealing with this for 2 years. Shirley in AR.
Re: First message
Shirley, you have surely told me the answer to this question before, but in my ever-increasing senior moments, I can't remember!!!: How did you suspect that you had blepharospasm or even have knowledge of it to suggest that diagnosis to the medics? Most doctors and nurses seem to be totally in the dark about it. Just wondering.Sally in Idaho waiting to move into our BEB compound
Re: My optometrist diagnosed me and knew how to spell it.
Hi Sally,
And you think that I'm going to remember if I told you or not? Really! My dogs have to tell me when it is time for them to eat. They have this inner clock.On to your question. I had never heard of Blepharospasm and neither had any of my nurse friends. When I went to my optometrist some 6 months after I slowly began having symptoms, thinking that I was having contact lens problems, he could see no evidence of any eye problem. I had already stopped wearing my contacts some 2 months before I saw him. I described my symptoms to him and he put me on an anti-inflammatory eye drop and made an appointment to return in 10 days. My eyes got worse and I explained to him again what my symptoms were- extreme light sensitivity, eye irritation, eyes wanting to close, having difficulty driving as my eyes wanted to close. Inability to watch TV or read without my eyes closing. I kept saying that they just wanted to close and it was getting worse and they were starting to squeeze closed and I was having headaches. Of course, I had no symptoms when I would go in to see him or only minimally so and my eyes would be open when I talked to him. I also told him this. He listened to me and said that he wasn't seeing it but that it sounded like I had a condition known as Blepharospasm and that it was treated with Botox and he had seen one other patient with it. He wrote it down for me and gave me the name of the only person in town that he knew treated patients for it. James looked it up for me on the internet and so did my husband and we found this site. I started reading as much as I could about it and the more I read the more it all made sense. The doctor that I was referred to couldn't see me as a new patient for a month and a half. I made the appointment but in frustration, saw other doctors that I could see quicker. I was in misery.
I at least had a name for it and after reading about it and contacting the BEBRF for information, realized that my optometrist was correct in his diagnosis.
But you are right, I had never heard of it before. I'll always be grateful to that "lowly" optometrist that listened to me and knew more about it than the ophthalmologist that has such an excellent reputation in this city. If he hadn't given me a name and I hadn't pursued it, I probably would have been locked up somewhere long ago.
Shirley in AR. Thinking that the town still needs a little more work, but it is getting there. --modified by Shirley-Arkansas-USA at Fri, Jun 01, 2001, 18:15:52
Re: My optometrist diagnosed me and knew how to spell it.
you know i initially thought it was from years of wearing contact lenses too, since i was 16; everything from hard to gas permeable to soft. Have we ever done a question where the percentage of previous contact lens wearers has gotten BEB?
Re:Contact lens and BEB
Kathy, we have talked about it before but it has been a long time. We could start a new question about it and ask. Why don't you start a new thread or new post and ask? I'll answer. You start it.Shirley in AR. who got very little sleep last night.
Re: First message
Hi ShirleyThanks for your welcome - it is wonderful to be able to talk to others about beb - most people, including doctors! have never heard of it. I was early 40's when it first struck and found that most people at the clinic were 70's plus!! Even now , 10 years of injections down the track I find most people at the clinic far older. I think there are probably a lot more people wandering around with beb that don't know they have it. Had to laugh about your experience with the doctor(?) who treated everybody exactly the same. My situation is similar in that I can only have it when he is having a Botox clinic though the dose is tailored to the patient. Another thing I have noticed in my brief talks with everybody who has replied to my posting is that many of you seem to be treated by "movement disorder specialist neurologists" and not ophthalmologists.
As far as I know my ophthalmologist is the only person using Botox in Western Australia. However, Jenny from NZ said she was treated here when she was on holidays at a clinic in Fremantle. I shall certainly follow up on that when I reply to her. It really seems to be more of a neurologist thing and not an ophthalmology thing. I have never considered surgery as the Botox works well. Surgery seems to be a last resort here from what I gather. I hope it improves things for you. I am very pleased with the Botox results if only they lasted longer. As for advice, I am so used to it by now that I just consider it as part of me and there is not much that can be done except have the injections and hope something better will turn up in the future. That new trial of a longer lasting treatment sounds promising.You can be a chatty as you like - I enjoyed hearing about your experiences. Lyn
Re: What kind of specialist?
Hi Lyn,
It's our night-time and I couldn't sleep so here I am.Some of us in the USA see Ophthalmologists, some Neuro-ophthalmologists and some Neurologists and then the Movement Disorder Neurologists. The last being my preference. They seem to have the most expertise with the dystonias from what I can gather. I would never have considered the surgery either if the botox had taken care of the Apraxia problem, too. I could get rid of the spasms and tight squeezing with the botox but my eyes still wouldn't open. They just wanted to stay closed. If I hadn't really trusted the judgement of my MDS, I would never have done it. I was at a standstill and only able to get my eyes open with a combination of Benadryl, Klonopin and a stimulant drug-Adderall. I was having Blood pressure and heart rate problems with that combination, but couldn't see if I didn't take it. The combination of those three drugs for me was allowing my eyes to open for 2-4 hours each time I took a dose. I didn't want to keep doing that so opted for the surgery. I also had met the surgeon at a BEB conference and respected him (also liked his boots). I'll still have to get botox for my lower lids and possibly forehead but I can deal with that. My eyes are staying open more, now and I have cut way back on the amount of medicine I was having to take. I enjoy hearing about Australia. That is one of the nice things about the bb. We get to visit with people from all over the world. I like learning about the different areas and things that you deal with. I know what you mean also about the support groups. The first one that I attended here, was mostly of people quite a bit older than my husband and myself. I noticed the age difference there but I don't notice it on the bb. The age gaps kind of disappear and if people didn't say how old they are at times you wouldn't or couldn't guess. Lordy, I could be the mother to some of these people or the daughter. I just think that we are all young at heart, here. Later Lyn,
Shirley in AR. who should be sound asleep
Re: What kind of specialist?
Shirlet did you never have the severe pain i have described with the intense spasms? or just the headaches.
Re:Pain and or headaches
I would call it more of a headache. It may just be a difference in how we describe things. The intense squeezing and pulling of the muscles would make my face hurt and cause me to have severe frontal headaches. We may be talking about the same thing but just using different words. It was very uncomfortable and I would just want to lay in bed or on the sofa and keep my eyes closed and then the spasms would decrease. It was painful, yes, but severe headache and facial pain describes it better for me. Shirley in AR.
Re: Re:Pain and or headaches
Re: Re:Pain and or headaches
maybe your pain manifested itself as headaches then , i'm just trying to get a handle on why i had such pain and noone else seems to.
Re: First message
Hi Lyn. Another welcome and this time NZ. I don't post aften but I do get on here nearly everyday. Your story is a carbon copy of mine, it was so uncany reading it. I just had to answer.
I was in W.A. in NOV last year, visiting my mum and dad who live there. I was lucky enough to get into the clinic in Freemantle. Is that where you go?
I am so much like you.... 12yrs, I was 32, diagnosed with mg, stopped taking the mestinon................It was as tho you were writing my story.
Do you have kids. Mine are 16,14 and 10.
I go to Auckland for my injections, only and hour away. They haven't been working so well lately for some reason and the dr just told me that it's not much point in me keeping on coming if they aren't going to work. Woops!!!
Would love to keep in touch. W.A. is so nice. Mum and dad live in Rockingham and they love it.
Hi to all you others. Keep up the great postings and keep that barrel at laughs rolling.
xx and oo 2 U all cheerz.
Jenny..... sitting by the fire in New Zealand.
Re: First message
Hi Jenny - thanks for the welcome and what is all this about a clinic in Fremantle? I have been told by the AMA etc that there is only the one doctor in Western Australia that gives Botox treatments. My doctor is in the northern suburbs. Fremantle would be closer to me - my nearest big town is Mandurah (40ks) and Rockingham is about 30ks from there. Fremantle would be much closer for me than going up to Perth's northern suburbs.You are probably familiar with Mandurah if your folks live in Rockingham. Dare I say "what a small world". No, don't have any kids, only 2 dogs, 4 chooks, 5 geese and 17 ducks - and one husband. Sorry your injections haven't been working well lately. I often wonder if I am becoming immune. The doctor says this is not possible. Perhaps you need a bigger dose. How long do you last between injections? Would love to keep in touch also. Perhaps you will come over to visit your folks again sometime.
Lyn - not yet sitting by the fire but it won't be long now
Re: First message
Hi again Lyn. Yes there is a clinic at the Freemantle hospital.
I can't remember the Drs name but I will ask my mum to find out or you could ring the hospital and ask them. He was good to.
My injections last about 8wks but I have them every 3 mths. I am usually well and truly ready for them.
Hope this helps you.
Got to go and get some shut eye now.
CHEERZ
Jenny
Re: First message
Hi again Jenny and thanks for the info re Fremantle Hospital. That is really amazing as everyone I have ever asked says there is only the one place to go. I will get on to them first thing Tuesday - Monday is a holiday here. Yes, that is the trouble when they only last 8 weeks but one has to wait a few more weeks to have it done again!!! Talk to you later.
Lyn
Re: Some more Aussies
Hi Lyn and Jenny ... In case you haven't discovered it, you can click on "Dystonia Board" at the bottom of this BB page and I've noticed a few other folks from down under who post fairly regularly on that one. You might want to get acquainted.Sally in North Idaho where it is chilly and windy today.
Re: Some more Aussies
Shhh Sally, :-) I was hoping to keep that a secret. What if they leave and don't come back? We had them first, they belong here. They can visit over at that "other" place but they must check in with us before and after. I guess that they would have eventually found out, anyway. We are more fun, though.Shirley
Re: Some more Aussies
We are definitely more fun ... sometimes that other place doesn't even change pages for days. New people, you are free to visit there, but please come back to us!Sally in North Idaho
Re: First message
Dear Lyn, Welcome to the BB. It is a wonderful thing and has been so very helpful to me in the two years that I have had BEB and Apraxia. I do not know what I would have done without the support of all the great people that post and share. I too was told I had M.G. but an EMG told a different story- I did not have M.G. but "something was going on". After seeing four other doctors, I was fortunate to find someone who worked with Dr. Alan Scott in Calif. during her fellowship and she was the first to put me into a diagnosis. I have a wonderful doctor in Providence, RI and he does my Botox injections every 7-8 weeks. I go next week and it is the first time I have tried to go 8 weeks. With the Apraxia being so strong, after three months decided to have the surgery and had frontalis slings put in --This surgery has given me my life back. I now work full time again, drive a car, read and able to watch tv. I envy other patients that can go 3-4 months without injections, but I can do this every 7-8 weeks, if I need to. We do not have to look very far to see friends or family members who are coping with so much more than we do... I wish you well and wish it were easier for you to get relief and not have to wait for clinics. Please keep posting and let us know how you are doing. Mary
Re: First message
Thanks for the welcome, Mary, and I do agree - this BB is indeed a wonderful opportunity to talk about beb. As most people have never heard of it and this includes the medical profession it is great to share experiences with fellow sufferers. Your surgery sound very interesting - I don't think a lot of that is done here for beb. I did once ask about surgery, having read about it somewhere but it seemed to be a last resort and if Botox works, it wouldn't even be considered.Yes, some people I have spoken to at the clinic here seem to be able to go for months before re-injecting but I can only go about 8 weeks. Why do you still need injections if the surgery worked? I notice you mentioned the 3 main things I find beb affects: driving, reading and watching tv. I find driving by far the worst affected activity. Thanks for your good wishes and will stay in touch.
Lyn
Re: First message
Hi Lyn,
Glad to hear from your part of the world. Some years ago in my travelling days, I had the opportunity to visit your land on two occasions. The first was a 10-day scuba diving trip off the coast of Cairns. It was just marvelous and the water is clear and sea life terrific along the great barrier reef and coral sea!! Were also able
to do some touring in Sydney. Second trip was to Melbourne--my ex-
husband was a racehorse fan and we decided to do the Melbourne Cup
one year. Pretty exciting. Maybe one of these years I'll get to
Perth. I've had this disorder for a bit over 3 years as I mentioned
in my bio. Take care, more later....Joanne M. San Diego, CA
Re: First message
Hi Joanne - nice to hear from another West Coaster. Not surprised you enjoyed Cairns - we lived there for about 5 years until the mosquitoes got too much. Now I'm afraid they have followed us back here. Yes, Melbourne Cup Day is a big day here if you're a horse racing fan and even if you're not. It is a holiday in Melbourne on that day and the whole country stops to watch the race. Most people take part in a sweep even if they're not interested in racing as a sport.I too am light sensitive - I think I always have been - always wear dark glasses even in winter sometimes. What sort of gardening do you do - flowers, vegetables? I am into native plants as you may have read in the Bio.
Lyn in sunny WA
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