Posted by: Lynn Yarbrough ®
02/03/2003, 11:23:21
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If Botox were addictive in any sense, I (who have taken it for 12+ years) would be climbing the walls right now. Don't buy that idea, it's nonsense.One of the things that is universal among the Blefros I have "met" is the need -- like an obsession -- to understand what is happening, to identify an activity, or an event, or a set of environmental conditions that is the root cause, so that when we change it the BEB will go away. I have felt that way, too. But the word "essential" used to described the disease is key: it means there is no known cause. So stop looking for it. You're no different from anyone else here, so stop frustrating yourself. I used to treat my condition with tranquilizers, and they ARE additive. They helped me for a time, but I had to give them up because they were causing problems. And these were problems for which there was an easily identified cause, and changing what I was doing made me better. The BEB was still there, but I got clean from the drugs. I am one of a fair number here who have reported having head trauma at some time in their lives, and maybe it's an experience that is common to all of us, whether we know it or not. So what? There's nothing to be done to reverse that. Am I frustrated by not being able to do that? No, I am blessed that the trauma wasn't fatal. I apologize if my message gives you more pain than comfort. I know what you've been going through, and a lot of what we have experienced has been a waste of energy. I hope that you will be able to refocus your efforts in more useful directions. --- Lynn
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Posted by: Virginia ®
02/03/2003, 13:20:40
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"the word "essential" used to described the disease is key: it means there is no known cause. So stop looking for it."Lynn, I hope the researchers don't share your opinion. Just because the cause is unknown now doesn't mean that it can't be found. Many times finding the cause leads to finding a cure or a better treatment. Virginia in AL
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Posted by: Lynn Yarbrough ®
02/04/2003, 12:56:15
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What I was trying to convey, and did very poorly, is that we all try to find the answers in something we ate, or something we did or didn't do, or something our parents did to us, or a hundred other things unrelated to the real problem. We waste our time -- and frequently our money -- chasing ghosts that seem promising but are irrelevant.For example, I spent years in unnecessary and ineffective psychotherapy because my analyst was looking for "what you don't WANT to see" in his own ignorance of what the mechanism of my condition was, namely that I simply couldn't keep my eyes open because my 7th cranial nerve was misfiring. Of course, I had no way of knowing the truth. Thanks for your feedback. I need a good kick in the shins from time to time. --- Lynn
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Posted by: linda ostheimer ®
02/04/2003, 13:46:41
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Hi Lynn and everyone else on the BB. My question to Lynn is, Does the
botox shots work as good for you today as they did in the beginning?
I have only been getting shots for 5 years but I always wonder if and how long I will keep getting good results. Linda in Indiana
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Posted by: Ann Doyle ®
02/04/2003, 14:45:44
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Linda, I suspect it is different for different people. For some , it never works. The good news is I know of a woman in my town who has been getting Botox shots for 11 years and it is just the same. It last 11 weeks for her. My bleph/Meige keeps getting worse so I need more Botox each time. One of these days it should level off and stay the same. I hope that is soon. Ann D.
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Posted by: Rita Silver ®
02/06/2003, 18:35:40
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As An area rep for 7 years and many in my support group using Botox even before it was FDA approved, have had no failures. I had failure in less than one year and needed to have upper & then lower myectomies. Everyone in my group of about 30, have different reactions. Having appraxia often
causes Botox to either work poorly or in a few not to help at all.Accept
for stress and our emotional outlook, I do not think psycologically Botox should even be considered. Too many of us were thought to be
"head cases" when our doctors did not know what we had. The only ones who can even be cansidered addictive, are those taking Botox for cosmetic reason. they are addicted to staying young! Rita Silver
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Posted by: Sherrie Feltz ®
02/08/2003, 08:04:14
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Here,Here on your addition theory!!! I agree fullheartedly !!!
Sherrie in FL
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Posted by: Rita Silver ®
02/08/2003, 13:26:47
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Hi Sherri in FL, Good luck on your comming myectomy. Botox should never ever be linked to being addictive or psychological. Botox is therapuetic. Needing to keep our ours open and our faces from spasms is real and should never be confused with anything other that our need to keep functioning as normally as we can.Lets not go back to when we were diagnosed incorrectly and undue all that the BEBRF has worked so hard in
educating our doctors.
--modified by Rita Silver at Sat, Feb 08, 2003, 13:28:21
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Posted by: Virginia ®
02/08/2003, 13:34:28
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Rita, if I'm not mistaken you have had a sling done (and undone). Is there any advice you would pass along to Sherrie? There aren't many on the BB who have had this procedure.
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Posted by: Sherrie Feltz ®
02/09/2003, 09:37:33
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Virginia---So there is a slight chance that after the myectomy, my eyes will open some on their own? That's another question to pose to Dr. Patrinely and his staff. He was surprised when I told him that his name and Dr. Anderson's were popping up all over the bb....all good. He said he'd have to check it out.
Rita---Dr. P is going to cauterize my tear ducts at the time of my myectomy. Was yours done also? I was trying to absorb all of the info while I was at his office...almost too overwhelming for me on that particular day. He didn't get too much into the sling other than explain how it was done and that it will allow my eyes to open on their own again(hopefully).He told me that my apraxia was severe enough to warrant the surgery. Either stay like I am for the rest of my life or take a chance at betterment. After the myectomy, he waits for the 3 month period until the healing/swelling is done? That way he can see where we stand and what effect the myectomy has had on my eyes?Am I correct in this? I guess I need to add these to my questions list for him. I will also mention the fact of too much pulley...I already use a ton of drops and ointment.
Thank you Virginia and Rita for sharing your experinces with me, it has been very helpful .You've let me in on things that I had no idea about and given me more questions for the Dr. so I will be as well informed as I can be going into this. Hopefully I will be able to share and help someone else after and while I'm going thru this.
Thanks again
Sherrie/FL
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Posted by: Virginia ®
02/09/2003, 10:17:45
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My lower ducts were cauterized 2 years before the limited myectomy, so there was no need for that at the time of the surgery. I've never regretted it.There are people who have had success with the sling. Dr. P (and probably most other doctors) don't do that procedure unless they feel that it is clearly warranted. But there are no guarantees.
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Posted by: Rita Silver ®
02/09/2003, 11:34:03
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Sherri, Dr Anderson closed my tear ducts during my first upper myectomy 7 years ago. It made a great differance as my dry eyes are not too bad. You should ask if you have the sling about having to use your forhead more to help with the sling. I am not sure if you are first going to have a myectomy or if you had one already and it didn,t help. The appraxia is the reason it often doesn't. Over these past 8 yrs I have gone long periods of not being able to drive etc. I do have very good sensory tricks that come in handy when this happens. A tight band from a baeball cap or even a tight beret across my upper forhead will keep my eyes open and then it is hard to close them. While I am busy my eyes will stay open and also if I constantly rub something with my thumb and index fingers ( a small stone or pin) I can go to the movies. I often feel like a freak, but I know from experience that while my brain is diverted I function very well. Years ago I saw Jankovic. Been to the Mayo Clinic in Rochester and I have been put on video tape by these doctors. I wish you luck and have a positive( I know it's hard) attitude
Rita Silver
--modified by Rita Silver at Sun, Feb 09, 2003, 11:35:04
Modified by at Sun, Feb 09, 2003, 11:35:05
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Posted by: Rita Silver ®
02/08/2003, 22:09:53
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Sherri, I had the Frontalis Sling a Year &1/2 ago. Rick Anderson did it as he also did my upper and lower myectomy. I had to have it reversed as my eyes were so very dry and painful that to protect my cornea I had to put the heaviest of ointments all day and several times during the night. Anderson went away on vacation and I was stuck in Chicago where we spend our summers for five weeks. With so much heavy ointments I couldn't read oe watch TV. Anderson when he reversed it says if I probably would have been around for a week or more in Salt Lake he would have tried little by little loosening the Gortex that they use for this surgery. So my advice is stick around so whoever is doing it to make sure you can tolerate your lids being on a pulley. The surgery itself is a piece of cake and reversing it means just cutting the string. One of my support group who had appraxia like I do and Botox doesn't work, went to Dr Patrinely who explained everything to her. She didn't do it. I will say if that was all that would help me I would try it again . The good thing that did happen that in the time i had it I developed scar tissue and that is why Anderson thinks botox is working for me again. So I am not looking a gift horse in the face. Good Luck
and keep in touch. Rita Silver
--modified by Rita Silver at Sat, Feb 08, 2003, 22:15:13
Modified by at Sat, Feb 08, 2003, 22:15:14
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Posted by: Lynn Yarbrough ®
02/05/2003, 13:33:07
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When I started on Botox in 1990, my first dose was, IIRC, 5MU at each of 18 sites, 9 per eye. Those lasted for 3 mos. before the next batch. My most recent dose, last month, was a total of 20 MU each eye, 5 sites per eye, every six months. So for me the effectiveness has markedly improved. To be honest, right now I'm wondering if the dose for my left eye is OK, because that eyelid is lazy -- it stays open, but only part way unless I make a little extra effort to keep it open. However, I think that will improve over the next few weeks.Bottom line: For me, the effectiveness has improved over time as my doctors learned more about my response to the shots. I work closely with each new doctor (there have been seven) to preserve what I have and improve their technique, where possible. Cheers, --- Lynn
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Posted by: denise mckew ®
02/08/2003, 09:16:59
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Hi Kathy,I don't believe that Botox itself is addictive, but I think you can get "addicted" to the results - like an obsessive-compulsion. Especially if you have any pain relief along with the relief from BEB. You get the Botox, the blinking and the pain stops in the injection area. There is a subconscious association between the pain relief and the Botox. Unfortunately, the pain probably returns before the BEB, and the want for more Botox returns too. And if you can't get Botox at that point, the stress of not getting it may add to the pain level, and the return and worsening of the BEB. I also have chronic pain, and I know how hard it is to live with it. I do feel like there is an assiciation between the pain and the BEB. Maybe just the added stress to my body. Winter time is the worse - everytime a storm comes through I hurt more. And just going outside in the cold tightens me up and sets off my face pain. The change to a "more stable" climate may help some, but Oregon still was seasonal changes, and winters. That can keep your pain active. I know your having a tough time, but hang in there, and most of all try to do what's right for you. Regardless of what I, or anyone else may think. No one else is walking in your shoes. Take care,
Denise
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Posted by: Linda Ostheimer ®
02/08/2003, 14:43:56
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Hi Denise, I have had BEB for 5 yrs now and get great results with
botox about every 4 mos. I was wondering about the pain you are talking
about. Is the pain in your face or around or eyes. I do not experience
pain just tiredness in my face muscle from squinting and the squeezing
when the botoxs wears off.Linda in Indiana
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Posted by: denise mckew ®
02/09/2003, 12:58:15
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Hi Linda,I have been in 2 car accidents and as a result, I have chronic myfascia pain and trigeminal neuralgia. Both these conditions add to the pain in my face. I really don't think it's the BEB that causes the pain. fatigue. I know that Kathy has the same type of chronic pain, that's why I mentioned it. Take care,
Denise
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