Re: What drug works?
Hi Rosemary and welcome to the bulletin board. I am 49 and have had BEB for about 2 1/2 years and I'm also from AR.
I am one of two people that I know of that finds that Adderall helps with the symptoms of blepharospasm. I have a son who has Attention Deficit Disorder and I have also been diagnosed with it some years back as an adult. I had taken a stimulant medication before for that reason but had stopped it. After I developed blepharospasm and an apraxia problem, I found in my researching that a study had been done with stimulant drugs in Japan and had benefited a percentage of these people. I was already taking Benadryl and Klonopin and getting botox injections. When I initially started taking the Benadryl, it helped to keep my eyes open but then it stopped working as well. I tried one of my son's Adderall tablets and it worked to keep my eyes open. I mentioned this at last years conference and the doctors said that they didn't know why it would work and wouldn't be something that they would prescribe.
I talked to my Movement Disorder Specialist here locally and he told me that if it helped me that he would prescribe it. It doesn't necessarily help me with the squeezing or spasms-just helps to get my eyes open. Stimulant medications help ADD kids (or hyperactive kids and adults) by allowing the neurotransmitters in the brain to connect more normally than they otherwise do. They're not really sure what causes BEB but think that it originates in the brain in the basal ganglia and has to do with nerves that misfire or in some way don't do their specific job correctly. My feeling is that in some way, Adderall or other stimulant drugs may help this in some people. I know that it does for me.
I'm sorry that you cannot get anyone to prescribe it for you if you already know that it helps.
Over-the-counter Benadryl does help some people with their symptoms. Others take Klonopin, Artane, Parsitan(can only get in Canada, not US), Baclofen, and Neurontin to name a few.Maybe others will comment on medications that they are taking and that are helping them. We do have a support group here in Arkansas but it hasn't met in awhile.
Again welcome from another Arkansan and ask whatever you would like. Shirley in AR. who finally got a brief rain shower(to make things even more humid)
Re: What drug works?
Hello Shirley;
Thanks so much for your reply. What part of Arkansas are you from?
I am from Camden (southwest). I am 48 years old and was diagnosed
with beb for 2 years. Finally! I am going to Dr. T. David Wilkes
in Little Rock who gives me my botox shots. He does not want to
talk about any other treatment. I am looking for a new doctor if
you have one to recommend. Preferrably in the Little Rock area but
I will travel almost anywhere - know what I mean? With the botox
shots I have good days and bad days. But I need something to pull
me through the bad days - that is why I mentioned the adderal. I have 3 teen-aged children and have been married for 30 years. I
was very active and a body builder for 10 years. Since the beb
I have confined myself to the house and became a loner. Because
of the discomfort of the beb, I feel ashamed that I can't look
people in the eye and look so uncomfortable. Please help blinky!
Re: What drug works?
Hi Rosemary,
I live in North Little Rock. I'm married and have two sons, 18 and 20.
The blepharospasm can definitely get you down. The first summer (year) that I was diagnosed, I was very depressed. I had to quit my job as I could no longer drive or read. Gradually things have gotten better and I am coping with things and know my limitations and work around them. Your life doesn't have to be over. I was lucky to be diagnosed fairly quickly and found this bulletin board with the help of my computer nerd family and with it has come much support. There were and are so many wonderful supportive people on here for me, offering advice and guidance and letting me know that I was not alone and that I was not crazy. I could come here when I was angry or sad or depressed or needed cheering up or just to be able to talk to someone that really did understand what I was going through and what was happening to me.About your current doctor-all I can nicely say is that I've been there, seen him, had him inject me numerous times, have a not so nice pet name for him, let him give me a ptosis each and every time I saw him, felt like I had just left a calf-roping contest each time that I was there, got tired of his attitude and his lack of concern, his lack of wanting to discuss anything with me, his inconsistencies, his laughing at me when I asked him who would hire a nurse that couldn't even keep her eyes open to read? He didn't like to be questioned about anything, he was right and I was wrong, he would prescribe no medications for any symptoms of BEB,(he said that none of them worked) his comment to me that I could go see a neurologist if I really wanted to waste my money and finally his telling me that he wasn't even sure anymore what was wrong with me as I wasn't reacting to the botox like a "normal" patient does. He would not consider changing his technique or his dosage as he knew what worked and he refused my request for him to consult with another doctor regarding my case as he had been giving botox since the early 80's and knew what he was doing. I probably better stop now-I could go on. Do you recognize anything or did he save all this just for me? What surprises me the most is that most of the people in our state see this person for their injections and for the life of me I can't figure out why. The only nice thing that I can say is that he is a handsome man. I stayed with him as long as I did because I didn't really know where else to go.
Enough of my tangent.
I now see Dr. Joel Perlmutter who is a Neurologist Movement Disorder Specialist. But, he is in St.Louis, Missouri.
I have had an upper limited myectomy about 3 months ago by Dr. Richard Anderson in Salt Lake City which has helped. I do still need botox but just in my lower lids and forehead, now. I probably will come back here locally for the injections after I get the dosage worked out with Perlmutter. He is really good and knows what he is doing. I would continue making the two day round trip but my husband's job factor will be playing into it very soon and it won't be quite so convenient to make the trip.
There are several people that you could try. One is Dr. Schwankhaus here in NLR. He is also a movement disorder specialist. I go to him for my medication. He is a very kind man that is easy to work with.
In Little Rock, besides you know who, is a Dr.Vaphiades who is a neurologist at UAMS and Dr. Andrew Lawton who is a Neuro-ophthalmologist at Baptist Eye Center.( I'm not sure about his expertise with giving injections and haven't heard any feedback about him. I will probably be having Dr. Schwankhaus do my injections in the near future but I have also heard good things about Dr. Vaphiades.
Dr. Perlmutter is supposed to be checking on docs in this area to see if he can find me someone that knows what they are doing. He will be doing grand rounds as a guest specialist here in Little Rock at the Med Center and said that he would try to scout out someone for me. I will let you know what I find out. I see him for injections this coming Wednesday.
Sorry that this is so long. Ask whatever questions you like.
Have you contacted the BEBRF and signed up for the newsletter? If you haven't, you should get in contact with them. They will also send you an information packet and give you a list of contacts in your area or names of physicians that treat BEB.
Shirley
--modified by Shirley-Arkansas-USA at Fri, Jul 27, 2001, 13:45:31 --modified by Shirley-Arkansas-USA at Fri, Jul 27, 2001, 13:48:21
Re: What drug works?
Geez, Louise, Shirley ... you surely did zap that man good!! Dr. X will have to hire a public relations specialist to counteract your feedback, but that's good for "them" now and again. Good job!!Sally in North Idaho
Re: I was bad
Yes, Sally, I was very bad. I did not mention his name, I hope. I did not heed my own advice, I know. I couldn't help myself. He was truly something.
To top it off, he even came to a fairly recent support group meeting and gave a slide presentation that was 15 years old. Mary Lou Thompson happened to be at that meeting. She began (rather nicely, I might add) to question him about a few things that he hadn't bothered to keep up with in the past 10 years or so and he halted his presentation, looked at her sternly and said that he had not come to the support group meeting to argue with her. Yes, I would say that he showed himself off rather well that day. I'll probably be sued for slander.I don't believe that a public relations specialist could work with this man. They certainly couldn't pay me enough money. I'm just glad that I don't have to see him anymore. Shirley
Re: I was bad
Hi Shirley, You were really bad, sounds as if it was well deserved though. Sounds like he might have a large ego & also a doctors are god problem. I have been very fortunate to have been diagnosed early and was sent to a very competent doctor. My injections are not working as well as they used too. I get 100 units, but think I may need to have that increased. The doctor I normally see dosen't really want to increase them, but I have another doctor that I went to when she was out of the country for 6 months & he said he would increase the amount. The problem is I don't think I can tolerate more in my eyelids and that is where I have the most trouble. Is that the point where you were when you decided to have surgery.
Billie in Kansas. Did our cooler weather and rain move down your way?
Re: I was bad
Hi Billie,
I don't know what others think about increasing injections much past 100 units. I personally think that it probably won't help. It may be that different sites need to be tried. I just don't know. I think that I will ask that at the conference and see what the doctor's feelings are on this. Some doctors feel that 50 units total should do for the areas around the eyes and others will go up to 100 units. I was getting a hundred units before my surgery.
You commented on tolerating more than 100 units around your eyes. Are you saying that because of the increase in volume of solution (and where is it all going to go?) or for some other reason? The doctors can mix it so that not as much diluent (preservative-free saline) is used to reconstitute the botox. My doctor does that as he was giving me 100 units. You will get the same amount of botulinum but in less solution. Clear as mud? It would just be a smaller amount of liquid being injecting but the same amount of toxin. OK? OK.Billie, I didn't have the surgery because the botox wasn't working. I had my surgery because even with the botox stopping the squeezing and spasms and pulling, I still could not get my eyes to open. (Apraxia) It wasn't a ptosis where the botox just caused a droopiness of the upper lids and they were at half mast, I just struggled all the time to get my eyes to open. They wanted to close. The combination of Klonopin, Adderall and Benadryl was allowing them to open for several hours (on a good day) after each dose of medicine. I decided that I could not continue long term on that much medicine and wanted to be a little more functional. The surgery did help the apraxia problem, I have no squeezing at all from my upper lids and I have been able to reduce the medicine substantially although I do still have to take it. Tell me again how your eyes react to the botox and what they do and the symptoms that still remain when the botox should be in effect. We did get your slightly cooler weather and a nice rain yesterday. Thank you for sending it. Anytime you feel like sending cooler weather our way don't bother to even ask-just send it.:-) Shirley in AR. who feels slightly bad about being bad although it was all true.
Re: I was bad
Hey Shirley, I'm trying to figure out how to tell you what my eyes do, or don't do after my injections. Right now, I have been getting my injections from another doctor because my regular doctor was out of the country for 6 months. She & her family went to Switzerland. They haven't worked very well at all with this different doctor. I am not due until August 16th, so I have like 3 weeks to go & I am really having trouble squinting & keeping my eyelids open. With my regular doctor, usually all of the injections work pretty well except the ones in my eyelids. Usually after my injections, sometimes it won't be right away, maybe 6 weeks, but my eyelids will be so droopy sometimes that I can't really keep them up. She will inject my eyelid pretty far on each side, knowing that close to the middle will really make them droop. (The doctor I've seen while she was away injected my eyelids even farther out and I blink a lot.) They haven't always done this, for the first few years, the botox worked well for me. She mentioned that possibly the muscles were weekened from the botox. She is going to give my next injections, so I will talk to her about it.
The reason I thought I needed to have them increased was I was starting to squint more before it was time for my next injections. That was what she had done when that happened before.
I think that I understand what you said about mixing the botox, but what would be the point if you get the same amount of botox? Is it just that there is less solution to inject?
Billie in Kansas where it's hot again today & very humid. I have always loved summer & hot weather, but this is getting a little bit much even for me.
Re:Billie
Hi Billie,
It kind of sounds like you could be getting a ptosis from the injections or like your doctor has said-that after years of getting the injections, your eye muscles have just weakened or you might have a lot of excess droopy skin over your upper lids from the squeezing and pulling and then when you get the botox, it makes them droopier and harder to open. The squinting sounds more like your botox is wearing off though or is not working in that particular area.In mixing the botox in less solution, there would be less to inject and therefore less discomfort but you would be getting the same amount of toxin. I just mentioned that because of the comment that you made about the botox and maybe needing it increased. I can't remember exactly what you said in your other post that led me to suggest that. "Senior moment". It sounded good at the time. :-)
I think that you were probably saying that you didn't think that you could tolerate anymore botox in your lids as it might cause them to be more droopy. If that is the case and you just really aren't getting much relief with the botox, then you might want to talk to your doctor and ask what options you have. Shirley in AR. who can't sleep and has to get up very early in the morning and go to St.Louis. I've had relatives visiting for several days and I think that my brain is fried.
--modified by Shirley-Arkansas-USA at Wed, Aug 01, 2001, 00:00:21
Re: I was bad
Actually, you did a public service by warning against his out-dated tactics. I commend you!!Sally in North Idaho where it is raining so I don't have to water my four zucchini plants now.
Re: I was bad
Shirley, I agree with Sally. There is so much to be learned about this disorder and so much frustration, why in the world should any of us have to deal with this type of treatment from a doctor? I guess there is a fine line here but I have to say I am on our side of it!! You are a tremendous asset to this bb. :<) Joanne M. San Diego, CA
Re: I was bad
Thanks Joanne. Wouldn't it be nice if we could have a doctor comment website? It is really not feasible. It would be nice, though. Not every doctor is for everyone. Some people click and some don't. What I like and need in a physician might not be what someone else needs. I need to be an active participant in my care and others don't want this. The biggest problem with my first BEB doctor wasn't so much a personality clash that concerned me but his lack of willingness to modify or discuss the reasons that I wasn't benefiting from the botox. Instead of trying different techniques or consulting with someone else, his answer was that I maybe didn't have BEB and that was why things weren't going well. It was my fault and certainly not his. I just feel sorry for others that go to him and have problems and then don't know to look elsewhere or possibly can't go elsewhere or are just accepting of the treatment they receive. That is true of any doctor-patient relationship, anywhere. This happens everywhere. Kelly spoke of her bad experience and I think that many others have had the same sort of treatment.The person that really liked my first BEB doctor told me that he had done lots of research and was very active with the foundation and support group meetings. I looked up his website and it was primarally for cosmetic surgery. He had received numerous awards and had written lots of papers but as I dug into things, there was absolutely no mention of BEB since the early 80's when he was in on the trials of botox. Everything about BEB stopped there. He had gone on to other things and had left BEB behind. It was quite apparent in everything that he did. He does still give injections but I think that he stopped being interested in it a long time ago. The support group had died here in the state and there hadn't been any meetings in some time. One has since started and there have been two meetings-one Jan 2000 and one Sept of 2000. I shouldn't complain as I have done nothing to offer my services to help with these. Just things to ponder. Oh, how is your eye? You were having some redness and irritation. Did you find out what the problem was? Shirley in AR.
Re: What drug works?
I had a similar experience with a doctor here in Dallas. He has the largest beb practice in the area and is the biggest jerk I have ever met. I was also having trouble with my jaw and neck and had been diagnosed with TMJ. I asked him if the two were related and he laughed at me. I now know I have meige. I got ptosis every time he injected me to the point my left eye wouldn't open for a month and he told me it was normal and to deal with it. I have had it one time in the 4 years I have been seeing my new doctor. I find it very ironic that I had to stand in the waiting room holding my 1 year old daughter crying, asking if there was any type of support group before he gave me the phone number to the foundation yet at our only meeting in 10 years guess who was asked to speak. I had a hard time even looking at him and keeping my mouth shut. Because of him I have learned to take control of my own health and to not settle for being treated like an annoyance rather than a person in need.
Re: Doctors that we don't need
Kelly, I'm sorry for both of us that we had to start out with, shall we say, not the best of what the health care field has to offer. I knew from the first visit that our doctor patient relationship was not going to work but being new to this, I didn't know where or who to see. He was the "expert" in our area and the BEBRF had recommended him. All the other doctors that I saw recommended him and said that he was the only one in AR. that they knew of that even gave botox injections for BEB. I kept trying to work with him and kept thinking that he would try different sites and different dosages but he would not deviate from his customary 50 units for everybody and you came in at the same time as another person that got the other 50 units. I believe that it works for some of his patients. I've talked to at least one of them that thinks that he is wonderful. I talked to her before I ever saw him so he apparently is meeting some patient's needs with his regimen. I just wasn't getting any relief and his technique of injecting left me with a ptosis each and every time. I've only had this happen once since I've changed doctors and that was something that I knew of the possibility of as Dr.Perlmutter and I discussed it. I had one particular muscle that overlapped the levator that was driving me crazy. Dr. Perlmutter said if he stopped the spasms in that particular muscle that he would also wipe out the levator (causing a ptosis). We compromised and he gave me enough botox to lessen the spasms and to give me a slight ptosis. It did exactly what he said that it would do. You got to love this doc. He knows those muscles and what the botox will do.I had a hard time keeping my mouth shut at that support group meeting also. In fact I told my husband to hold me down or shut me up if I started to say anything. He left very quickly after his presentation and I was just glad that Mary Lou Thompson was there as I had someone to vent to. I'm glad that you have someone that you are happy with now and are in control of your health. It makes a big difference and is very liberating. Shirley in AR.
Re: What drug works?
Rosemary
I live in Fort Smith, AR & use a neurologist, Dr. Kareus, who is with St. Edwards Hospital, for my injections. I went to the Baptist Ctr., Dr. David Wilkes a couple of yrs. ago & was satisfied with him. I also saw Dr. Vaphiades for a complete exam, but didn't learn anything new. But when I found someone in Ft Smith who could give the injections I preferred that. However, the last 2 times I rec'd injections they haven't helped as much. He gives me 50 units each time. I'll be 65 in a couple of weeks, & have had bleph for over 5 yrs., but it didn't get too bad until a couple of yrs. ago, & that's when I finally was diagnosed. I'm having to change my life style. Am doing very little driving. I'm hoping that my ptosis will improve as the botox wears off. My last injections were 20 days ago. I teach & play bridge, but am giving up the playing. I hope to continue teaching at least thru Nov. Good luck. I agree with Shirley, if your haven't joined the BEBRF you should do so. I enjoy the newsletters.
Joann on the Okla border where we need rain.
Re: What drug works?
Hi, Rosemary,I have had BEB forever (at least it seems that long) and, when I got my diagnosis, tried every drug available (in 1990) to relieve the spasms. Most of them had no effect, the rest had serious negative side-effects. For a couple of years I took a lot of tranq's, which helped, but they turned out to be addictive so I had to quit. Botox has been my salvation. Since then I have tried to keep on top of every suggested drug treatment, and the reports on all of them have been similar: either no effect or negatives. So I haven't taken any of them. If you find something that works CONSISTENTLY for you, by all means stick with it. But listen to your Dr., and if your suggestion is rejected, it's probably for a good reason, especially if you are already taking something for another chronic condition. (Some drugs are really nasty when taken in combination with others.) Botox is sometimes painful and always expensive, but with the right dosage and injection points can be very effective for a long time (I'm at 6-7 months) and is still the treatment of choice for most people. The alternatives are (IMHO) worse, so you might as well face the music and dance! --- Lynn
--modified by Lynn Yarbrough at Fri, Jul 27, 2001, 12:36:50
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