Re: acupuncture
Pam - I go for blephs and meige syndrome. I'm not sure if it helps because I am having good luck (KNOCK ON WOOD) with all the treatements: Botox B, parsitan, some supplements, acupuncture and a therapist. It certainly does make me relax and that helps with stress. My condition is TOTALLY dictated by stress. So anything I can do to help that, I do it. Facials, manicures, etc. Anything!
Shelley
Re: acupuncture
I have had bleph for 7 years, I agree with you regarding stress, however I am a totally positive thinker, I work for my self and part of of that is teaching from a manual, which I cannot read, my eyes close the minute I start talking, I make my students read out loud. The danger is that when I reopen my eyes there is no one in the room. I have a suspicion that in my case I have a deep neurosis because stress makes it worse, but what I call stress is really just activity. When I go into the garden to work on mundane projects, the condition disappears.
I am having acupuncture, and the result are outstanding, for a while.
I also believe that benefit is gained by the relaxing time I enjoy at the acupuncture. The herbs I am being given have improved my Chee.
Chris
Re: acupuncture
Chris, would you mind telling me what herbs you're taking? I went through acupuncture almost one year ago and it didn't help (certainly didn't hurt either) and I've been on ashwaghanda ever since, I love it and feel it really improves my mind. I wasn't diagnosed with blepharospasm until March this year and the botox has taken care of my spasms completely.glad the acupuncture works for you. penny in oklahoma city
Re: acupuncture
Penny, I will try and find out, The shop has 100 glass jars, which are un labeled and the english speaking assistant explains, Dr recommends these herbs and provides them in a paper bag. Botox did not work for me quite the reverse, it got worse. I am still playing with why is this happening to me, because of the good relief I obtain when I am in the right mode, mood, state etc. Talking is the trigger, when I was young I had a stutter, which although lurking, I manage to overcome and can talk very fluently, the "expert i consulted who is apprently the UK's number one told me that the brain signal that causes bleph is the same one the causes stuttering. Stuttering is caused by a vicious cirle of tension, fear, nerviousness. break the circle and overcome the fear and usually the stutter will improve. I often wondered if my success with the stutter has driven that demon under ground and has re appeared as blepf. Chris
Re: acupuncture
Penny, I will try and find out, The shop has 100 glass jars, which are un labeled and the english speaking assistant explains, Dr recommends these herbs and provides them in a paper bag. Botox did not work for me quite the reverse, it got worse. I am still playing with why is this happening to me, because of the good relief I obtain when I am in the right mode, mood, state etc. Talking is the trigger, when I was young I had a stutter, which although lurking, I manage to overcome and can talk very fluently, the "expert i consulted who is apprently the UK's number one told me that the brain signal that causes bleph is the same one the causes stuttering. Stuttering is caused by a vicious cirle of tension, fear, nerviousness. break the circle and overcome the fear and usually the stutter will improve. I often wondered if my success with the stutter has driven that demon under ground and has re appeared as blepf. Chris floodtech@btinternet.com
Re: acupuncture
Chris, I wrote you long message yesterday evening and I've lost it, I have no idea where it went, guess I blew it away instead of posting it. I was reading later in some of the information I have from the foundation and I seem to think they are saying that blepharospasm and meige go hand in hand. I am wondering if you concur with this. I have a strange movement high in my throat that moves from the center out to both ears. I had it long before I began having trouble with my eyes closing and talked to several doctors about it, they all just looked and kinda shrugged, finally a dentist told me I had tmj and made me a mouthpiece which did absolutely no good. After being diagnosed with blepharospasm and visiting the bulletin board and reading the material I have from the foundation I have determined that meige is what I have and my doctor is working on getting me a referral to a neurologist. I'm wondering if anyone has any thoughts on this. I don't have a problem other than the discomfort of this happening almost constantly, there is no pain involved and it doesn't seem to be getting worse. I'm interested in learning more about your blepharospasm and the stuttering to learn how they are related. penny
Re: acupuncture
Hi Penny,many of my emails go that way too. I am obviously only one person participating in this forum,and my interest to see if any one person paralells my ideas. When I told the story of my stuutering. I was kind of hoping some one else would say, yep I have that too. Despite hearing all the words of other people both sufferers and helpers, i still hold an inner belief that I can overcome this problem, I believe this despite being told there is no cure. I base this on that my moments of relieve seem to me to depend on my state of mind. While I am typing this my mind is absorbed on replying to you and I have no problem at all. So to analise my state I am saying if this is a disease
why is it not permanent. Non sufferers have commented it looks like a habit? Some one else said they like to treaet themselves with massage hair doo,s etc. This indicates to me that some deep underlying stress is the real cause and that the other much worse symtoms are the mind or body screaming out what ever you are doing stop. The mundane activites are best for me, also the loner type things where I am just looking after myself. Sounds and feels very selfish,(sportsman usually are)I have and ex wife and four kids, whom I love dearly the kids that is. but all of those relationships cause turmoil and stress and I have considered if my whole life style of striving is just not good for me.
Contentment seems to me to be best achieved when you stop wanting material things. each person has an assessment of themselves and if you do not achieve your "perceived" goal then that can be stressful. This writing is very helpful to me because I am really testing other peoles reacting to my thoughts. I am really hoping that someone will say, thats a load of BS so lets hear your re-actions to this, regards Chris Netherton floodtech@btinternet.com
Re: Reactions
Hi Chris,
My personal belief about this disorder is that it is a physical abnormality or abnormal functioning of something in the brain. Was stress or genetics or medicine or lifestyle a "trigger" for this to occur? I believe that it probably was. I also believe that this will vary from person to person and that there might be many different reasons or causes for Blepharospasm. I do believe that stress and lifestyle play a role in our symptoms, sometimes worsening and sometimes making them better. I do not believe that the symptoms are totally dependent on these factors, either. At least, not for me. A trip to the beauty shop or a massage do not improve my symptoms.
Can we realistically remove all the stress from our lives? I can't. I can attempt to eliminate as much of the stress as I can but with life comes responsibilities. And with responsibilities, comes a degree of stress.Even when I am perfectly relaxed and don't feel concerned or worried about anything, my symptoms may be horrible or they may be gone for a brief period of time. Focusing on something does seem to help but I view this as a sort of sensory trick. A time for the brain to think about something different or to be busy with something else thereby forgetting to tell my eyes to close rather than to just naturally stay open. I did not change my way of thinking to cause this to happen. I certainly believe that stress and anxiety worsen my symptoms but do I believe that this actually caused the disorder or is keeping me from becoming "well" once again? And emphatic "No" to that. I wish that I could believe that if I changed my outlook or eliminated all stress ( not likely) that I would miraculously be cured or healed. My personality only allows me to live my life the best that I can and deal with problems as they arise and try to help others when I can and arm myself with knowledge. Shirley in AR.
Re: Reactions
Well said, Shirley. I agree with all you've said and I do think that something happens to trigger "This" in our brains. Probably not the same something for everyone.As far as stuttering, though, I have seen several cases where were absolutely unable to utter a cohesive sentence without constantly tripping over their tongue, but after considerable therapy and training, they learned to control it and speak very well. So I don't know that stuttering is a part of blepharospasm. Sally in North Idaho, mid-80s and a breeze. Too hot for me, but would probably seem pleasant to most of you.
Re: Reactions
Hi chris,
It was when I started to believe I could overcome this,
that I started on my road to recovery.
I felt I took back the feeling that BEB was controlling me.
I did have to change things in my life, like my job for instance.
I've learned to accept these changes, work around them, and I'm
enjoying life one day at a time. As of today there is no cure,
but, I don't believe it is too far off.
Myself and Virginia mentioned our voices sometimes "pauses".
New research regarding Tourettes and Stuttering,leads me to believe there is some type of connection that ties these involuntary movements
like BEB. If they find a cure for any of these things, even Parkensons's, it brings us a step closer to a cure. People with Tourettes do have more control over their movements for a time. Perhaps the same can happen with stuttering.
When I went for biofeedback I was taught to read three words at a time, then breathe. Also to focus on the 3 words rather than the whole
paragraph. This helps to keep my eyes open when I read out loud.
Sometimes it works, sometimes it doesn't.
What I have learned from reading is we were probably predisposed
to BEB and something wheather stress, meds, or toxins brought it out.
Everyone has stress, even happy stress is stress. It's not
how much, it's how you handle it.
When I think of stress management, I don't think hairdresser.
Stress management alone will not cure BEB. But, it will help your mind and body to work together to work in a calm state. Think of it as
your inner anti-anxiety pill. Will an anti-anxiety pill cure this, no.
Will it help your anxiety, that in turn can be helpful, yes.
There are sensory tricks that can be used as a tool. If touching the side of your face gives you an hour of peaceful shopping or conversation, isn't that better than nothing?
Mindy
Re: Reactions
To Shirley, Sally, and Mindy, All your reply's struck a note which I can now relate to better, this forum is really is great because it is a pretty lonely illness. I particularly recognised happy stress, I have always been involved in competive sport, and now in business. I have the attitude that if any thing can be done I will try my best to find it you have all displayed that reasoning by your answers I also add your complete understanding of my questions. The seeking of multy answers to a complex question is bound to throw up a few good and few bad answers especially as we are all different I am certainly doing quite well at the moment which may be that because I am taking new intiative through acupunture,herbs, my general wieght etc etc. That this may well be a kind of stress reliever or even a placebo. I was heartend when mentions of a cure in two to three years was mentioned elsewhere. I have friends who are always mentioning various alternative medicines for this or that ailment I believe that it is necasarry to dig deep to cope with Bleph. The continous discomfort and restriction of enjoying things are a little stressful in them selves thanks again every body. Chris
Re: Reactions
Mindy and Chris: I can really relate to the stress issue - happy stress, to me, is being challenged. I love my job, and it's very difficult. If only I could isolate myself of all the pettiness, back-stabbing among the staff and the ridiculous expectations from the state, I would be perfectly at school, and have fewer symptoms. Anyone have any idea how I can separate the "happy" part of my job and dump the "unhappy" I an going back to work in 1 month, determined the succeed.
Shelley
Re: Reactions
Well said Shirley. I'm a day late as usual (responsibilities of 2 little girls) but I agree 100%. For years after my diagnosis I tried to "pretend" this didn't exist. I didn't tell anyone, didn't alter my lifestyle, etc. because I thought I was "tough" and I could beat it and to be honest I was embarrassed about what people would think. Now, at the ripe old age of 32, I have a new belief system. Quiting my job as a CPA (I worked my butt off for that license!) was not giving up - I was not a wimp. I haven't read a novel in 2 years but now listen to books on tape and that is so relaxing! I do yoga instead of weight training, we play games instead of drive to the zoo. Accepting my limitations and structuring my life, or what parts of it I could control, was the best decision I ever made. I now look forward to LIFE instead of praying to die. I am a mother and a wife instead of a woman who lives in the same house. Minor stress is a problem for me - even something as simple as packing for vacation makes my symptoms worse. Having to put my dog to sleep almost did me in physically (crying alot sent my botox out the window permenantly and tightened up my neck and jaw so much I am still in therapy 4 weeks later but greatly improved.) I can't wait for a cure and pray for one daily. And, while I will NEVER be glad that I have this, I have learned from it. I have learned compassion and most of all I have learned faith. God is there for me, guiding my way no matter how bad it gets. Kelly in Dallas (below last year's 100+ temperatures but still HOT!)
--modified by Kelly Saffell at Thu, Jul 26, 2001, 12:09:45
Re: acupuncture
Hi Penny, I hope you can read this attatchement in Word Chris
Re: acupuncture
Chris, sorry but this is just symbols, want to try another way? In the meantime I'll keep trying to find a way to read it. penny
Re: acupuncture
Penny, To go over some history of how I got here to this point.. When I managed to over come stuttering I was about fifteen-sixteen. Hay fever and red eyes sneezing was always a feature until age 35 then it lowered into very rarely . at age 40 I did have a so called tic occasionally. Making facial grimaces had also been and on of thing from very young. I put these down to nervousness. Later at about age 48 I occasionally wanted to squeeze my eye lids shut to gain some sort of relief from tired eyes. I will say here, I was someone who could drive for 6 hours have a cat nap for ten minutes then drive again for 6 hours. Slowly the squeezing became Bleph this was diagnosed by a neurologist as Ocular Myasthenia who after treatment admitted he had made a mistake and sent me to an a specialist at Oxford eye infirmary who said you do not look as if you have Bleph but your description of the condition is very accurate. So I was given 5CC of Botox and later ten CC This caused me not to be able to close my eyes fully, After another four months I tried again, at the higher dose but this was also unsuccessful, I think I had four treatments and then gave up the fight with that Surgeon.( it was he who said the brain signal that causes Bleph is the same signal the causes stuttering) Since then, for the last 7 years I have been dealing with it in my own way. I visited another web site three years ago and the only treatment was Botox. My recent use of acupuncture has given me the best relief so far. I also have to admit that I do make facial movements and just hope that it is not noticed. I happen to visit a speech therapist in my course of business and her comment was that " the person who can discover what causes stuttering" would be a millionaire overnight. I have no cost for the NHS treatment, The acupuncture and herbs I pay for myself which is quite expensive about $175 a week. Acupuncture produces endorphins from the brain which rush to the site of the needle if I understand it correctly. Endorphins are also produced from rigorous exercise. I have also observed that if I am angry for any reason, or (and I am not sure of the protocol for saying this) if I am lucky enough to enjoy good nocturnal discussions the condition goes away entirely. Sorry to be so long winded. The connection with stuttering is only opinion and not fact. And my comments are observations only if that is any help Chris
Re: acupuncture
Penny, I asked to day which herbs I was given, the evasive reply was that they are a "combination" before the treatment I gave some of the information I had read on the forum the answer I was given is that the brain signal that causes stuttering is un likely to cause blinking. and that chinese medicine often disagrees with western opinionmy the session to day gave the usual instant relief. then withing a couple of hours from talking, the condition appears. I am now here typing your email and I am again fine??? please keep talking Chris
Re: Shelley/Stress Management
Hi Shelley,
So glad to hear you're doing well.
As far as stress, that was my biggest offender.
Have you tried, meditation, visualization, deep breathing
or biofeedback? They have been a big help for me.
Mindy
Re: Shelley/Stress Management
Hi, Mindy. I go to an acupuncturist which helps with stress. I am also seeing a therapist to help me cope with a long term syndrome and the problems it has caused in my life. I have breathing tapes to listen to and need to go back to the gym where they offer yoga classes. The parsitan and Myobloc are working so well together. I will get my shots in 2 weeks (I am on a quarterly schedule) and am still doing pretty good. I drive everywhere. I have kept myself busier than usual this summer. I am already starting to get ready for the new school year.I am so grateful that you told me about the parsitan. It really works for me!
Shelley/CA
Re: Shelley/Stress Management
Hi Shelley,
It warms my heart so, to hear how well the Parsitan
is helping you.
Is your doctor going to the conference?
Hugs,
Mindy
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