Re: BEB and acupuncture
Hello Jody, I am sorry that your dad has not received any good results from the Botox. I also had the same experience, I then tried the acupuncture for eight treatments, I did not receive any good results!
I have read where a few people claim that they did get some help,but I believe they are very few.Hope that your father can get some help.
Corrie
Re: BEB and acupuncture
Corrie:
Thank you for responding to my question. I had one appointment with one acupuncturist who called just before the appointment and cancelled saying she did not think she could help. I have spoken with one more who is familiar with BEB and is willing to give him a few sessions to see if it helps. He is getting very frustrated.
The Placebo Effect
AS a nurse I had heard of the placebo effect, but never quite understood it, until I did my training with Dr. Herbert Benson in Boston at the Mind/Body Medical Institute at Harvard. Mistakenly people often think that if a patient receives relief from a placebo(non-medication like a sugar pill or Saline injection,their pain or problem wasn't real). Research has shown that to be absolutely untrue. The Mind and Body are so miraculous that "Belief" can trigger the mind to have the body release natural endorphins or other chemicals which actually do relieve the "very real" symptoms. "Belief" has 3 components...belief or trust in the one prescribing the treatment, belief in the specific treatment, and belief/expectation the overall treatment will work by the physician(or the one providing the treatment) and the patient's belief/expectation. This holds true for "real medications and treatments". I say all this to remind all of us that no matter what we try the placebo effect is always in motion and affects how effective something may or not work or why it may stop working.
Re: BEB and acupuncture
Hi Jody,
I tried acupuncture for a short time but stopped it as I was seeing no change in my symptoms and it was quite expensive and not covered by my insurance.Sometimes it takes a while to get placement sites and dosages correct. How many times has your dad tried the botox? Most of us have to get botox every 2 to 3 months with some going a little longer in between injections. Most doctors want to give them every three months. I was receiving a total of 100 units every 2 months with injections in my forehead, inner and outer corners of the upper lids and high on my cheek area and temple area. I usually received 12 to 14 injections in all and others sometimes get more injections than that. From just what you have written in your post, it seems that your father's doctor may be being a bit conservative. If you have not already done so, You should check with the BEBRF and ask them for a packet of information on Blepharospasm. Their address, Phone # and email address is in the Welcome to Newcomers at the top of the bulletin board page. They will also give you a list of doctors who are familiar with treating BEB in your father's general location.
There is much information in the BEBRF Main Pages (at the top of the bulletin board page) that would be very useful to you and your father.
Your dad needs to be evaluated by a physician very experienced in treating BEB. Some of us see Neurologists that are also Movement Disorder Specialists, or Neuro-ophth or Ophthalmologists. I have heard of some that did receive some benefit from acupuncture or possibly helped with stress management. Stress always makes the symptoms of BEB worse. Many people take or try vitamin, mineral or herbal supplements, acupuncture, chiropractics, bio-feedback, hypnosis and other non-traditional things but so far none have been proven to consistently help the symptoms of Blepharospasm although some have seemingly gotten some benefit from these things. It doesn't hurt to try. Good luck to your dad and ask whatever you like. If your dad can read any of the bulletin board posts, it would probably be of help to him. One can feel awfully alone and frustrated with this disorder. Shirley in AR.
Re: BEB and acupuncture
When I first developed symptoms(Jan 99)and before I was diagnosed, I started acupuncture and continued for about 7 or 8 months. I had 2 sessions in June of this year and the acupuncture never made a difference in my BEB or Fibromyalgia. Other people have had positive results for Fibromyalgia and even BEB, but I didn't. Everyone is different.
Re: BEB and acupuncture
I had acupuncture treaments for several weeks prior to diagnosis as well
and they made absolutely no difference to my BEB or Meige.Christel in Ca.
Re: BEB and acupuncture
When I first developed sumptoms five yrs ago, I tried acupuncture (and everything else anyone suggested, including some really weird stuff - hey, desperation is the mother of experimentation!). It didn't do anything, but it WAS nice to just stop and relax for 20 minutes. Last year I saw a different doc, an American who does Chinese medicine (he studied and worked in China for 10 yrs). He did acupuncture with an electro stim that sent a wave thru the needles. It felt like a giant butterfly whanging wings on my face - I could even feel it in my scalp. During the first session, my eyes popped open. At the end, I sat up and spent at least 20 minutes listening to this doc and the chiro talk to each other. Usually, when I talk, my eyes are much better, but when I listen, they close. In this case, they were open the whole time, much to my amazement. I went home and watched TV. The effect lasted about 4 hrs til I went to bed, but was gone in the morning. I had another treatmt a week later. Same immediate result, but then I was heading over to see clients (my hardest task as a psychotherapist, since I can't keep my eyes open without propping them up). Unfortunately, the effect did not carry over to that situation at all. The doc said the first result was probably something about a shock to the system (wake up, there's something new happening here) but then it reverted to what it had become accustomed to. He thought that for lasting change, I would need to do several treatments. He said the Chinese would probably treat this 3 times a day for 10 days in a row, with, he estimated, 60-70% success. (However, he had never actually seen anyone previously with this condition). Then it happened he was going back to China for a while, and I never hooked up with him again. So I don't know if I'd done the 30 treatments, if it would have helped or not.
Re: BEB and acupuncture
Jaelline, I had a somewhat similar experience with my first acupunture treatment. Needles had been placed at my temples and forehead. My eyes opened and stayed that way for basically the rest of the day. I was so very excited that this was going to work. Woke up the next morning as bad as ever. No further treatments resulted in any improvement so I gave it up.Shirley in AR.
Re: BEB and acupuncture
As you can see from the previous posts, people get mixed results, mostly negative, from acupuncture. I think the good results are attributable to the effects of adrenaline in the system, induced by the needle traetment. I drove with BEB for many years with no accidents, although I had to give it up finally when the spasms got too violent. I attribute my driving record to adrenaline: when I got into a near-accident situation, my eyes would always open long enough to get out of it, and I'm confident the adrenaline rush is what did it. Now if I could just figure out a way to scare myself several times a day... :-) --- Lynn
Re: BEB and acupuncture
Hello again, Just checking things out. Got BoToxed for the first time yesterday. Say Lynn, I don't know about being scared several times a day but for most of the day utter boredom followed by several moments of sheer terror logging is the key. Cliff
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