new to BEB/Meige


Posted by Linda Tuttle , Feb 09,2002,05:43   Archive
For the past 4 years I have struggled with light sensitivty, progressing to eyes closing and severe pain across right side of my face. Then the other facial "stuff" started about a year ago.
This started my last year of graduate school (VERY STRESSFUL). At the same time I began having trouble with chronic sinus problems.
Initially in '99 a neuro-opthamologist diagnosed trigeminal neuralgia and a neurologist decided it was fibromyalgia. When the pain was aleviated with cranial-sacral manipulation, the doctors just decided I was nuts. It was good that my field of study is psychology.
All the differing opinions made me feel agitated, frustrated, and just talking about this is making my eyes go closed. Is there a metaphor here?
For the sake of my sanity, I just decided all the problems were due to a persistant sinus condition. Last month the doctor finally prescribed a med that cleared the sinuses - BUT the light sensitivity, eye closure, facial twitching, dull headaches, and neck and shoulder tighness were still present. Once again out of frustration and an attempt to cope, I did many searches on the internet until I found BEB/Meige. I have been reading everything I can on it. I find myself often in tears of relief, knowing that other people know what it is like to walk around with their eyes closing at unexpected times. I almost sat on another employee the other day when the eyes were expecially bad.
I took information about BEB/Meige into my PCP (doctor). I don't know if he believes me or not, he has continued over the past four years to indicate that my problems were psychosomatic. Anyway, he agreed to give a referral to a neurologist (THE one who works with their medical group, not a movement disorder or BEB specialist). The HMO still has not approved this and it has been a week. Maybe they are trying to find out what BEB is ---???
I know this has been long-winded, but it feels great to "talk" with people who understand. Anyway, I can't thank all of you enough for giving me some direction, a feeling that someone understands, and hope for some relief. I spent several days in the past 2 months not being able to open my eyes enough to leave the house safely. Like many of you, I was in an accident (30 yr ago) where my head broke the windshield. My other question is if any of you also have difficulty sleeping? THANK YOU for being there.



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Re: new to BEB/Meige

Re : new to BEB/Meige --- Linda Tuttle
Posted by kathy , Feb 09,2002,06:59 Top of Thread Archive
beb is a physical problem , not a psycogenic one. at the last conference, this was pretty firmly said in our newsletter. i'm sorry you are having problems coping. this bulletin board helps alot. i have had almost everything you described happen to me many,many times.
hell yes, i have difficulty sleeping! have you had the botox injections yet? i have now tried taking 1 dye-free benadryl to sleep, and it worked pretty well. i would rather not take it all the time however.when you can't sleep it disrupts your entire metabolism. getting enough rest is very important with this condition, i think.

--modified by kathy at Sat, Feb 09, 2002, 07:01:38




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Re: new to BEB/Meige

Re : new to BEB/Meige --- Linda Tuttle
Posted by June in Toronto (June Floyd,June in Toronto), Feb 09,2002,07:42 Top of Thread Archive
Hi Linda, welcome to the beb bb, but sorry that you have this disease. You seem to be on the right track now though in finding out information for yourself, and I hope your doctor does the same and sends you to a movement disorder specialist, so that you can get the right diagnosis.

It definitely is NOT IN YOUR HEAD - most of us have been told this at one time or another - I was given tranquilizers years ago and I just threw them back at the doctor (literally) as knew it needed much more than that.

I have trouble sleeping on occasion, but suppose that's not much more than I would if I didn't have this disease. It becomes a problem when I put the preservative-free night-time cream in my eyes though and can't sleep - because then I go around in a blur unable to do anything - except try and think good thoughts!

Good luck to you, stay calm and talk to us anytime.

June in Toronto (beb/meige)




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Re: new to BEB/Meige

Re : new to BEB/Meige --- Linda Tuttle
Posted by Christel-California , Feb 09,2002,10:19 Top of Thread Archive
Welcome, Linda, glad you found us. To me it was the ultimate relief to find this board to know I wasn't alone with this disorder. I would suggest you get in touch with the BEBRF and have them send you information packages for doctors, because there is no guarantee that the neurologist you've been approved for is necessarily familiar with this disorder.
Good luck and let us know how things progress.

Christel in Ca.




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Re: new to BEB/Meige

Re : new to BEB/Meige --- Linda Tuttle
Posted by Bob Campbell , Feb 09,2002,11:25 Top of Thread Archive
A lot of people have trouble sleeping for a lot of different reasons. In my case, it is due to Restless Leg Syndrome/Periodic Leg Movement Syndrome which is another movement disorder. You may want to check out the links below.

Sleep

Restless leg Syndrome




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Re: new to BEB/Meige/bob

Re : Re: new to BEB/Meige --- Bob Campbell
Posted by kathy , Feb 11,2002,02:01 Top of Thread Archive
might i also add it's one of the major problems women go thru with menopause.



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Re: new to BEB/Meige/bob

Re : Re: new to BEB/Meige/bob --- kathy
Posted by Linda Tuttle , Feb 11,2002,08:25 Top of Thread Archive
I am 55 and can verify the sleep problems related to menopause. But with that lovely part of life's journey behind me, I began reg sleep patterns until the symptoms of BEB developed. It's not all time, but more nights than not. I hope the treatment (whatever that will be) for BEB will bring some added sleep with it.



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Re: Sleep problems

Re : Re: new to BEB/Meige/bob --- Linda Tuttle
Posted by Shirley-Arkansas-USA , Feb 11,2002,09:53 Top of Thread Archive
Linda, I am 50 and had a Hysterectomy some years back so I know that is not the reason for my sleep difficulties.
I attribute mine to various things related to the BEB. Napping during the day when I am having a "bad eye day", frustration and depression with trying to deal with symptoms and medication changes. Life's not perfect and BEB makes it even less so. I try not to let the sleep problems bother me too much. If I can't sleep, I generally get up and quietly listen to music or the TV or have a light snack (bad, bad, bad, but it does work sometimes) or even get on the bulletin board and post to my hearts content if my eyes are working. That is actually a great stress reliever and allows me to relax and then I can usually get back to sleep. If I try to stay in bed when I can't sleep, I wind up getting angry and more frustrated so I've learned that isn't the thing for me to do.

Shirley in Arkansas-3 years BEB/Apraxia-10months post-op upper myectomy




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Re: new to BEB/Meige/bob/Linda

Re : Re: new to BEB/Meige/bob --- Linda Tuttle
Posted by kathy , Feb 12,2002,05:30 Top of Thread Archive
well, the benadryl is not doing the trick anymore for me, as soon as I start the estrogen phase I think my sleep will improve. (Men please don't read this as you will find it boring). I did just order one of those sound therapy mechanisms that is supposed to lull you back to sleep with pleasant sounds such as ocean waves, running streams, etc. maybe that will help.



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Re: new to BEB/Meige

Re : new to BEB/Meige --- Linda Tuttle
Posted by Shirley-Arkansas-USA , Feb 09,2002,11:33 Top of Thread Archive
Hi Linda and welcome. I really feel for you that you have been having these problems this long and still no real diagnosis. I was discussing the length of time that it takes for people to get an accurate diagnosis for this with my neuro-ophthalmologist a few weeks ago. He was under the impression that now, people are quickly diagnosed and that most ophthalmologists and some PCPs are fairly well informed about Blepharospasm. I laughed and said I didn't think so. It is better but we've still got a long ways to go before everyone gets a "quick" diagnosis.
I was lucky that my optometrist was knowledgeable and wrote down that big word "Blepharospasm" for me and my sons did some internet searching for me and placed me in front of this forum. I've been here ever since. It has maintained my sanity. I'm not really sure where I would be at this point if I hadn't had this bb and the information from the BEBRF. I certainly wouldn't be handling things as well and might have thought that it was psychosomatic after a while.
The doctors that I was referred to for confirmation and treatment disputed the diagnosis. They didn't tell me that it was psychosomatic-just that they didn't have a clue what was wrong with me. I kept pushing and going to different doctors because I had access to the information regarding BEB and it all "fit".

It is really important that you see someone who is knowledgeable about Blepharospasm. Otherwise you will just be spinning your wheels. That could be a Neuro-ophthalmologist, an Ophthalmologist or a Neurologist that specializes in Movement Disorders. Those specialties are your best bet. A Neuro that does not specialize in movement disorders may or may not know squat(medical term) about BEB. You may have to just wait and find out. The treatment of choice is BOTOX so if he doesn't give BOTOX to anyone, you will have to wind up seeing someone else anyway. You may or may not decide to go the BOTOX route but if this Neuro doesn't give BOTOX, then he is not going to be very familiar with this disorder. Isn't it wonderful playing the maze of doctors game?

If you haven't yet, I would suggest that you contact the BEBRF. You can find their address and phone number in the "Welcome to Newcomers" at the beginning of this bulletin board page. They can give you names of doctors in your area that are familiar with treating patients with Blepharospasm and also names and numbers of people in your area with BEB and the nearest support group. And we are always here, too.

Your sleep question-I've always had periods of time that I have difficulty sleeping and that hasn't worsened or changed since I developed BEB. It comes and goes.

Welcome and keep talking to us. We do know what you are going through.

Shirley in Arkansas with BEB/Apraxia




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Re: new to BEB/Meige

Re : new to BEB/Meige --- Linda Tuttle
Posted by Sally - in - Idaho , Feb 09,2002,15:52 Top of Thread Archive
Hi Linda,

Welcome to the BB. I'm happy to read that it is already giving you relief as far as thinking you are psychotic ... that has happened to many of us! The neurologist within my HMO chain was not a mds, but he realized what I had and, along with my PCP, referred me out of the network to one who is and who gives Botox injections. So don't give up hope on getting a referral to one if that is what you feel you need.

I suffer a great deal from chronic sinusitis and would really be interested in hearing what your doctor gave you that finally cleared yours up. I'm just getting over a session that had my face in a lot of pain, but the antibiotic only provides so much relief ... then it's back to square one with a gradual build-up to the intense discomfort once again.

Congratulations on working toward your Master's!

Pop in here often. Ask anything you want, and feel free to make any comments. You might even bring us a joke now and then.

Sally in North Idaho BEB/Meige (diagnosed approximately 3 years)




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Thanks for the welcome

Re : Re: new to BEB/Meige --- Sally - in - Idaho
Posted by Linda Tuttle , Feb 09,2002,22:35 Top of Thread Archive
I do not understand exactly how the responses work on the BB, so I hope I am doing this right. It seems easiest to respond once to all the welcomes and helpful advice.
I told the PCP's office that the referral should be to a specialist, but was told "a neurologist" was as special as it gets for the first referral. Then once the referral comes - there is always a wait for getting an appointment. That is why I have called my opthomologist and requested info on a neuro-opthomologist. The one I worked with 3 years ago, left the area. Seems like most of the good doctors leave - we are a small farming community on the Central Coast in CA.
Everyone seems to be convinced about the Botox. It is a new concept to me and sounds somewhat frightening and unpleasant. Of course, so is BEB!
Sally - regarding the sinus situation - it cleared after a course of Zythromax. I have also been following most of the suggestions in the "Sinus Survival" book by Robert Ivker, D.O.
It seems like there are so many things that could be interrelated to BEB. Well, at least I won't be bored - there is still much to learn. I sent off for information from BEBRF the first of the week and am anxious to receive it. Do I need to specifically ask for a list of doctors, or will they automatically send it?

Thank you all again and again. I don't know how receptive the neurologist will be for someone coming in with a "self-diagnosis", so after I actually get an appointment, I may need to vent some more. It's nice to know there is a place where people understand.




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Re: You sound like me!

Re : Thanks for the welcome --- Linda Tuttle
Posted by denise mckew , Feb 10,2002,11:57 Top of Thread Archive
Linda,

I had my first car accident June '99. I had severe whiplash that left me with chronic pain in my neck and shoulders. At that time I developed a sensitivity to light and problems sleeping. The docotrs told me that although I have a lot of pain, it wasn't fibromyalgia because it doesn't effect the lower part of my body. I was in PT for 6 months and constantly falred up. I went though pain management, and biofeedback with a small degree of relief. I tried Amitrypaline (sp?) and Trazadone (again SP?) to try getting better sleep so that the muscles could heal. But both made me more depressed. Finally I told my doctor I couldn't take the antidepressants anymore and fuction. I ended up taking Flexril and Tylenol 3 as needed for pain and sleep for almost two years.
In March '01 I tried chiropractic adjustments - didn't work. But I found out then that I have TMJ and should probably get braces. My dentist and an othrodontist agree.
Before I made that decision,I had a second accident May 01. This time I was hit from behind, and hit the right side my face on the steering wheel. I ended up with a bulging disc, trigminal nerve nueralgia and hemifacial spasm which is now turning into blepharospasm. But the second accident led me to find a pain specialist in Boston, who is also a nuerologist, who gave me Paxil. It has done wonders for me as far as getting rest and my neck and shoulders have healed some more. I can now tolerate some exercise without flare ups.
For the nueralgia, I have Lidoderm patches, which I can put on my face were the painful nerves are. That took care of the bruised feeling too. But it does wear off as the day progresses. Warm packs on my face feels great. I also wear neck-ups, a fleece collar I had from skiing, all the time on cold wet days. Keeping my face warm keeps the pain down.
I started having accupunture and that helps a little with the face pain and also she does a energy balancing for me that seems to calm me. I also talk to a counseler about once a month.
I have had Botox once, mostly to take care of the face pain and headaches. But be aware, the Botox can set off a flare-up in your neck muscles. I was in bed for about 3 days because of the pain in my neck. That was a side effect that I wasn't told about. I am still twitching and spasming, and I still get a sharp pain in the corners of my eyes - I'm thinking that is from a small muscle "burning out" because of all the twitching.
On the 14th I am going to see a motion disorder specialist. I do beleive that all the previous injuries led to blepharospasm.
I hope that you can bypass some of the searching on your own for answers here.
Take care of yourself.
Denise




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Re: You sound like me!

Re : Re: You sound like me! --- denise mckew
Posted by Linda Tuttle , Feb 11,2002,08:32 Top of Thread Archive
In a strange way, it is good to hear someone say "you sound like me." I had not heard of Lidoderm. I do find alternating warm and cold compresses on my face to being some relief. Also, took the advice received from an early BEB BB post and had a friend that does massage work on my head, neck and shoulders this weekend. Felt great and brought some temporary relief.



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Re: Thanks for the welcome

Re : Thanks for the welcome --- Linda Tuttle
Posted by Sally - in - Idaho , Feb 10,2002,13:16 Top of Thread Archive
Hi Linda,

Thanks for the sinus information. I don't know if I've ever had Zithromax or not. Will write it down and ask my PCP next time I see him. I intendt to seek out the sinus book you mentioned Finding ways to get additional relief from at least one of my annoyances would be great.

Botox injections sound much worse and more frightening than they actually are. I post-ponted my first ones for several months because I was terrified. The needle prick and flow of fluid into the muscle/ nerve (whatever) hurst briefly, but it's over with so quickly that I've found it to be well worth the ordeal. I get six injections around each eye every two months. This relieves the symptoms enough that I'm willing to continue as long as insurance allows.

Good luck.

Sally in North Idaho where it's another bright, blue, beautiful day of sunshine of snow (blinding, but great for "normal" people)




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Re: Thanks for the welcome

Re : Thanks for the welcome --- Linda Tuttle
Posted by Shirley-Arkansas-USA , Feb 10,2002,18:35 Top of Thread Archive
Linda, I'm not really sure that the BEBRF will automatically send you a list of doctors if you don't ask for that information.
Send them off a quick email at bebrf@ih2000.net and ask them. Ask for some contacts in your area, too. They may routinely send that but I don't know anymore what they send out. When I originally contacted them, I called them and Mary offered things to me as I didn't even really know what to ask for. She was very helpful.

Seeing a neurologist as a first referral will be ok but is probably a waste of time. We sometimes have to jump through all the hoops, though when dealing with HMO's. You'll probably find if you do much researching of this, that you know more than he or she does. Some doctors don't take to kindly to that while others seemed pleased that their patients are informed and will talk to you more. We'll hope for the latter.

Shirley in Arkansas


--modified by Shirley-Arkansas-USA at Sun, Feb 10, 2002, 18:35:53




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Re: Thanks for the welcome/linda

Re : Thanks for the welcome --- Linda Tuttle
Posted by kathy , Feb 11,2002,02:07 Top of Thread Archive
linda , there is a list of beb doctors, maybe someone else can post you the link on this.i don't know how to do it.



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Re: List of doctors who treat dystonia

Re : Re: Thanks for the welcome/linda --- kathy
Posted by Shirley-Arkansas-USA , Feb 11,2002,09:38 Top of Thread Archive
Kathy, here is the link to the list that you were talking about, I think. These doctors treat all forms of dystonia and there is no suggestion of how good they are-just information that they have given to the dystonia foundation themselves. Individuals can just check through the list and see if their form of dystonia is treated by this specialist in their area and make their own determinations. It does give someone a starting point along with any information that they can obtain from the BEBRF and patient contacts in the area.
Just look up your state and closest city and go from there.

http://www.dystonia-foundation.org/health/

Shirley in Arkansas with BEB/Apraxia




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Re: Thanks for the welcome

Re : Thanks for the welcome --- Linda Tuttle
Posted by Lynn Yarbrough , Feb 12,2002,16:14 Top of Thread Archive
I see that you live in the CA Central Coast. I am pleased to recommend to you Dr. Josh Novik, a Neuro-Opth in Santa Cruz. He is very familiar with Torticolis and BEB, and has several patients for whom he dispenses Botox and other medicines. When I last saw him in 1999, he could be reached at (831)476-5252. There are of course several more in the San Fran area as well.

Good luck! Say Hello from me to Dr. Novik if you meet him.

--- Lynn




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Re: new to BEB/Meige

Re : new to BEB/Meige --- Linda Tuttle
Posted by Moderator-JB , Feb 11,2002,19:46 Top of Thread Archive
Welcome, Linda

We certainly DO understand! You've come to the right place.

Even with an HMO it is possible to lobby your system to receive care from a 'qualified' specialist, i.e., movement disorder specialist (which you sound like you need). The neck and shoulder tightness is very suspect of Dystonia of the neck, termed CD, Cervical Dystonia or ST, Spasmodic Torticollis.

Hang in there and know that you're not alone.

Judy Blackman
Moderator




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