Blepharospasm Bulletin Board

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Posted by: Evelyn in AL
03/15/2004, 20:26:00


I am new to the bb. 62 year old female residing in Northeast Alabama. Diagnosed with BEB 1994. Had problems finding a doctor who could properly diagnose my problem. Some thought it was just a mind thing and there was no physical problem. One doctor thought it was alergies and had a complete round of alergy test. One opthomologist said "Your eyes are open now" and did nothing nor did he refer to another doctor. Others did not know and showed no interest at all.

Went to Dr. Kline an neuro opthomogolist in Birmingham and it did not take him 5 minutes to make a diagnosis, BEB. He put me on Klonopin and suggested trying Botox. Went for a couple of years before trying the botox. It was injected for three months consectively with very little if any results. The doctor said it would not help and discontinued.

Am participating in support group in Huntsville and it has been very helpful. Try to go as much as possible but miss because there is nobody to drive me. BTW, I drive very little, only when absolutely necessary.

Have severe burning, very sensitive to light and movement. Must keep a low profile in my life. No grandkids making a lot of noise and commotion. Large crowds trigger BEB where there is a lot of activity.

Have very dry throat and mouth, especially in morning and during night. Throat is sore every morning. Drink coffee to sooth the soreness. Gets better as day develops.

Have other problems such as fibromyalgia, arthritis, degenerative disc. etc. Medicine for this help me sleep.

Plan to go to first Conference in Birmingham in August. Looking forward to that. Hope to meet others and make new friends at that time.

My husband, Eugene, is my typist since this would be almost impossible for me to do.

Evelyn in AL




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Re: Newby from Amy in Ga.
Re: Newby -- Evelyn in AL Top of thread Archive
Posted by: Amy
03/16/2004, 01:03:22


Hi Evelyn,
Welcome to the board. I used to live in Birmingham. I am 37y.o. with generalized tardive dystonia including blepharospasms which just recently occurred. My neurologist is also at Kirklin clinic (Dr. Claussen).
I think we all understand going through the "mind" thing. I am glad you finally got diagnosed.
My question is, have you tried the BTX with any other dr.? Or, have you tried it recently since so much new research has come out and did Dr. Kline use a telemetry machine? I am just wondering because the dr. administering it can make a huge difference in how the BTX works.
Many people here have great ideas on coping strategies. i am just learning myself how to deal with the eyes. I know prescription sunglasses are a plus for me.
Yes, mine gets worse with stress or over stimulation or fatigue. It really gets bad when I am angry!
I am also going to the BEB conference in Birmingham as I am interested in hearing Dr. Ray Watts speak. I may or may not go see him at a later time for an eval and I think I want to meet him from afar first. Maybe we will meet there. I know Virginia who posts here will also be going.
Amy



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Re: Newby from Amy in Ga.
Re: Re: Newby from Amy in Ga. -- Amy Top of thread Archive
Posted by: Virginia in AL
03/16/2004, 08:23:40


Hi Amy,
The doctors at the conference are almost always available for one-on-one questions. It may be that you will be able to speak to him while at the conference. It does help sometimes to know a little more about a doctor before an appointment.
Virginia in AL



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Re: Newby from Amy in Ga.
Re: Re: Newby from Amy in Ga. -- Amy Top of thread Archive
Posted by: Gayle
03/16/2004, 16:14:23


Amy, what is a telemetry machine? How does the Dr. use it and how does it help. Never heard of this before. Please enlighten me. Thanks.

Gayle in GA.




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Re: Newby from Amy in Ga.
Re: Re: Newby from Amy in Ga. -- Amy Top of thread Archive
Posted by: Evelyn in AL
03/16/2004, 17:34:24


Amy,
Thanks for the response. You seem too young to have this problem. I live in a little town named Hytop that is north of Scottsboro.

Have not tried BTX lately nor do I know what a telemetry machine is, would you care to explain?

I have learned to keep the low profile and I do much better. Try not to get out on real sunny days. Always wear dark wrap- around glasses.

Hope to see you in Birmingham.

Evelyn in AL




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Re: Newby from Amy in Ga.
Re: Re: Newby from Amy in Ga. -- Evelyn in AL Top of thread Archive
Posted by: Amy
03/18/2004, 11:58:34


Hello All,
I must first tell you how encouraging it is just to be connected, especially to people I may get to see at the conference! Thank you for just being out there. It is nice to know that if we all have to go through this at least we can do it together somewhat.

I hope I am using the right word when I say telemetry machine but I am thinking I might not be. (Sorry, I get confused sometimes). It is the electrode they place on the end of the needle to measure the amount of activity in the muscle. Some drs. Don't use it as they have done the shots so long they feel they just know. My experience has been different. The times I have had the most experience is with the electrodes. The doctor can insert the needle and if it is not that exact muscle with the most activity, he can usually locate the muscle causing the other muscles to spasm. Does that make sense?

An example is that with my face the ENT explained that sometimes the muscles in the scalp are actually pulling the muscles in the face and it looks like it is just the face. Sure enough, he found the ones in the scalp and injected those and then also some smaller ones in the face. Not getting the main culprit muscle(s) can cause the BTX not to be as effective.

So far, BTX has been my saving grace and I have found little relief except through it. I honestly do not know how I would make it without it.
God bless each of you,
Amy




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Re: Telemetry
Re: Re: Newby from Amy in Ga. -- Amy Top of thread Archive
Posted by: Shirley Barr in New Mexico
03/18/2004, 12:30:15


Hi Amy,
Glad that you brought up the use of the telemetry machine. My understanding is that a lot of the Neurologists that are movement disorder specialists do occasionally use the telemetry machine for correct placement of injections for Oramandibular Dystonia and Cervical Dystonia and Meige. A doctor that I have seen before told me that he did use the telemetry frequently but never for blepharospasm as the eye area is so delicate and the needle that is used for the telemetry would be painful.
Has your doctor used it specifically for your blepharospasm and placed the electrodes close to the eye area or was it used primarily for your other facial involvement? Things may have changed since I spoke with this doctor some 3 years ago.
Sounds like you have an excellent physician.

Shirley in New Mexico




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Re: Telemetry
Re: Re: Telemetry -- Shirley Barr in New Mexico Top of thread Archive
Posted by: Kathleen
03/18/2004, 13:35:09


I don't know if this is the same type of machine, but my neurologist uses electromyography to find the muscle groups that are spasming. It does not involve a needle, though, just sticky electrode patches.



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Re: Telemetry
Re: Re: Telemetry -- Kathleen Top of thread Archive
Posted by: Shirley Barr in New Mexico
03/18/2004, 15:04:06


Does he use this for your eye spasms?
Maybe the "needle" is a thing of the past.
Shirley



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Re: Telemetry
Re: Re: Telemetry -- Shirley Barr in New Mexico Top of thread Archive
Posted by: Ann Doyle
03/18/2004, 15:49:46


I had brain surgery for hemifacial spasm and was spasm free for 2 days. After 2 months of it getting progressively worse, I went back to PA and had the Electric thing done on my face and concluded it was Bleph. Could have saved a lot of time and money if I had the test done in KY.
My DR. who has always done it by feel and has been doing it since the inception, is having a bit of a problem since I had a very good myectomy done is Salt Lake.
I never heard of the electrodes on the head but I have Meige and that is where he is having a problem--in the Meige area. Sure sounds good to me. Since I just had the shots and they are OK but not fabulous, maybe I will ask for that next time. That was an excellent idea. Thank you , whoever---Are there shots for the memory? Ann Doyle



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Re: Injections after myectomy
Re: Re: Telemetry -- Ann Doyle Top of thread Archive
Posted by: Shirley Barr in New Mexico
03/18/2004, 20:03:21


Ann, I've found that some doctors have a bit of a problem with the injections after a myectomy. They seem to have a set pattern for their injections and the surgery area seems to throw them off. Keep working with him.
Not all of the doctors are going to have an EMG machine but it never hurts to ask.

Shirley in New Mexico




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Re: Injections after myectomy
Re: Re: Injections after myectomy -- Shirley Barr in New Mexico Top of thread Archive
Posted by: Ann Doyle
03/20/2004, 10:21:01


Thanks Shirley. I can always count on you. Would an EMG machine help? He's connected with the Vanderbilt Hospital. They would surely have one. He showed me four pictures of facial muscles. Two from the front and two from the side and asked me to show him which ones. Normally I can put my finger on the exact spot but I was having a good day with the muscles and a bad day with the memory bank.
I know I'm not getting enough around my eyes. Last time he only gave me 15 units per eye . This time he gave me "more". Where can he give them around the eye. I am getting three at the outer edges but my one eye is still happier closed although I can open it. Can he give them under the eyebrow? On the lid? That sounds painful.
I have my next appointment 4 weeks before a family reunion. They usually start wearing off in the 5th week and are gone by the 6th.
How is the new place? Have you made any friends? Found a good DR.? Ann D


Modified by Ann Doyle at Sat, Mar 20, 2004, 10:27:57

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Re: Injections after myectomy
Re: Re: Injections after myectomy -- Ann Doyle Top of thread Archive
Posted by: Shirley Barr in New Mexico
03/21/2004, 12:05:50


Hi Ann,
I'm afraid that I'm not that well versed on the EMG machines. I've never seen one or how it is actually used...just had a physician and his nurse tell me about them. You can always ask him about it...especially for your meige.

I've got one eye that is "happier" closed, too. I have a ptosis(droopy lid) on the left that is increasingly getting worse. I'm not getting any injections in areas that would be causing the droopiness so that levator muscle just be stretching over time with the spasms. It is also by far my worst eye for the muscle spasms, now and that probably has something to do with it.

Ann, your doctor can give the injections on the lid but if you've had Dr. Anderson's upper limited myectomy, you shouldn't need them on the upper lids. Keep working with your doctor and make notes about where you feel most of the squeezing coming from on a bad day and then take that with you to your doctor visit.

You asked about our "new place". We live out of town on a little over 6 acres in a pueblo style home. It is a very arid climate with lots of dust...no airconditioning and we have a well. Life is a lot different here than in suburbia. We have mountain views and beautiful skies. The closest neighbors are several acres away. It's a very relaxed area with lots of arts and crafts. People are very pleasant and not in a major hurry. A really beautiful place...the down side is a few scorpians and tarantulas and rattlesnakes. But hey, as long as I look where I'm going, I should be alright. (VBG-Very Big Grin)

Shirley in New Mexico (somewhere between Santa Fe and Albuquerque)




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Re: Telemetry
Re: Re: Telemetry -- Shirley Barr in New Mexico Top of thread Archive
Posted by: Kathleen
03/18/2004, 15:54:12


Yes, he uses it to treat my beb. It is a little weird because there is sound associated with it so you can actually "hear" the noise of the muscle firing.



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Re: Telemetry
Re: Re: Telemetry -- Kathleen Top of thread Archive
Posted by: Shirley Barr in New Mexico
03/18/2004, 20:11:52


Thanks Kathleen. What specialty is your doctor? I think that this could be extremely helpful to many of us.
Shirley in New Mexico



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Re: Telemetry
Re: Re: Telemetry -- Shirley Barr in New Mexico Top of thread Archive
Posted by: Virginia in AL
03/19/2004, 08:07:59


This whole approach presupposes that your "bad muscles" are all going to do their thing right there in front of the doctor, which doesn't happen to be my experience. I need one of these machines to take home with me that will record the info when I'm at my worst and play it back for the doctor when I go in for injections.



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Re: Telemetry
Re: Re: Telemetry -- Virginia in AL Top of thread Archive
Posted by: Shirley Barr in New Mexico
03/21/2004, 11:45:50


You're right, Virginia. I was thinking about that myself and that the only time that it would really work would be if the muscle was actually spasming at the time that the machine was actually monitoring that particular muscle. It would work in some cases and might not be very helpful in others.

Shirley in New Mexico




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Re: Telemetry
Re: Re: Telemetry -- Shirley Barr in New Mexico Top of thread Archive
Posted by: Kathleen
03/19/2004, 09:54:40


He is a neurologist with a sub-specialty in movement disorders. I was actually diagnosed by another neurologist,but referred to my current one because of his subspecialty. I do receive injections in the forehead, as well as directly around the eyes and in the temples, so apparently that is where the machine is directing him. I've only had the injections twice and while I have obtained relief, it is not an elimination of all symptoms, which is what I want. (As I bet we all do!) He tells me to have patience, so I'm now working on developing a character trait that I have not had in all my 46, oops, 47 (today's my birthday) years.



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Re: Telemetry/HAPPY B'DAY KATHLEEN
Re: Re: Telemetry -- Kathleen Top of thread Archive
Posted by: June in Toronto
03/19/2004, 11:59:18


Congratulations - hope you have a great day.

June in Toronto




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Re: Telemetry
Re: Re: Telemetry -- Shirley Barr in New Mexico Top of thread Archive
Posted by: Amy
03/18/2004, 19:49:21


Hi Shirley,
My ENT uses the needles around the face, jaw and scalp but you are right, he does not use it directly around the eye. What he does do is use it to find the other muscles that are affecting the smaller muscles around the eye so that I get complete relief(so far). It is really strange how the muscles in the face can have sort of a domino effect. I did not believe it at first but then through miscommunication, someone else did the injections in my face last time and did not use the machine or target the muscles in the scalp. Sure enough, it did not work well at all.
Like always, clarifying this is my experience and I don't profess to be a specialist though I think we all are actually the specialists since we live with this!
Smiles,
Amy



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Re: Telemetry
Re: Re: Telemetry -- Amy Top of thread Archive
Posted by: Shirley Barr in New Mexico
03/18/2004, 20:09:53


Thanks Amy for explaining a bit more. I really think that it is a great idea and wish that more doctors used the machines. Might make a big difference for some of us that don't get a lot of relief from the injections.
I'm curious about what doctors are using the Telemetrys or EMG machines. Is your doctor in a teaching hospital or private practice and does he or she have partners?....is he or she a neurologist that specializes in movement disorders?

Shirley in New Mexico who just found a scorpion running around on her bedroom floor....uggh!!! oh the joys of living out in the wild....




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Re: Telemetry
Re: Re: Telemetry -- Shirley Barr in New Mexico Top of thread Archive
Posted by: Amy
03/20/2004, 10:43:54


Hi Shirley-
My docs that use the telemetry machine are is private practice. The ones who did not were at the large teaching hospital and supposedly the best around. The ones in private practice are a physiatrist and an ENT(though both did train at Johns Hopkins). The ones who DID NOT use the machines were movement specialists. Read through the lines about ego and how I feel about specialists who are so special they forget they are there for the patients' benefit. One told me he didn't need the machine as he had been doing this 19 years and had his own technique. It did not do me a bit of good that he had his own technique and considered himself too experienced to use the machine, but it cost me twice as much. A little humility goes a long way for everyone involved.

Good luck and sometimes try "the guy next door". Sometimes the best are actually just around the corner. I found this out the hard way.
Amy




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Re: Telemetry
Re: Re: Telemetry -- Amy Top of thread Archive
Posted by: Shirley Barr in New Mexico
03/21/2004, 12:36:53


Hi Amy,
Thanks for your comments and thoughts. In my 4 plus years of having BEB, I've seen some really good doctors and some really bad ones. I've recently moved and had to start over again looking for that "good" doctor. I had gotten to a point that things were going pretty well and I was satisfied with my doctor and the results that I was getting with my injections. Now, since the move, I've been on a downhill slide. I get my injections again at the end of this month. This next visit will probably determine whether or not I start looking again. Life's too short to continue wasting months out of one's life because injections didn't work for one reason or another.

Shirley in New Mexico




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Re: Newby
Re: Newby -- Evelyn in AL Top of thread Archive
Posted by: June in Toronto
03/16/2004, 05:46:12


Welcome Evelyn and Eugene,

Your story about having difficulty being diagnosed is like most us. Also not driving, being a bit anti social because of noise and lights is also like most of us - not nice is it?

Amy's comments are good about Botox and a second doctor. How many units of Botox did you receive and where were the injection sites? The doctor should tell you all this and give you a `map' of the sites so that they can be adjusted the next time around (to improve the results) or to show another doctor if you chose to go that route. I'm glad you are enjoying the support group and you will find the conference excellent I'm sure and I hope Eugene goes with you.

I've attended only one conference as I live in Toronto, Canada - hubby came with me and we both learnt a lot. I am to be 65 year's young this year and I have had beb/meige for 9 years and attended a BEBRF conference in Columbus, Ohio the year after I was diagnosed - it was super informative and the people were great - doctors and patients. I receive 90 units of botox every 3-5 months (get my next set of injections tomorrow on St. Patrick's Day) and they work well for me, although I do get for about a month afterwards quite severe side effects until things settle down (we all differ). I was on various medications before botox but they didn't seem to help.

Things do change with beb over the years Evelyn, so please hang in there. For a few years I couldn't watch tv, go to a movie or read a book - I can now do all three although the books are in large print and I've only just got back to that special activity. I wear wrap around dark sunglasses and brimmed hats outside constantly - use preservative-free drops/creams in my eyes 365 days per year and take eye breaks most days (sometimes twice a day). I try to destress, smell the roses and be good to myself as this is very important with any disease (some call beba disorder or condition).

Keep in touch and let us know how you are doing. Best wishes.

June in Toronto




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Re: Newby
Re: Re: Newby -- June in Toronto Top of thread Archive
Posted by: Evelyn in AL
03/16/2004, 17:24:26


June,
I did not try another doctor nor do I remember how many units. It has been several years since. I also tried a second round and that did not work either. Do not have the map and don't know if I will try again with another doctor. My doctor mentioned about the type B that might be an option but I have not decided to do it.

My husband does take me to the meetings but he cannot go everytime. He will be with me at the conference. I do have good family support. Did not want to sound like otherwise.

Hope to see you in Birmingham

Evelyn in AL




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Thanks
Re: Newby -- Evelyn in AL Top of thread Archive
Posted by: Virginia in AL
03/16/2004, 08:32:32


It's nice to know somebody was listening while I rambled at our Sunday support group meeting. Good to have you here, Evelyn and Eugene. Hope you hang around and get to know the group. I really enjoyed meeting Mary Lou Thompson and thought she did a great job with the group.

Virginia in AL




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Re: Thanks
Re: Thanks -- Virginia in AL Top of thread Archive
Posted by: Evelyn in AL
03/16/2004, 17:38:27


Virginia,
We did enjoy Mary Lou very much. We had heard her before but really did enjoy her this time.

Evelyn in AL




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Re: Thanks
Re: Thanks -- Virginia in AL Top of thread Archive
Posted by: Shirley Barr in New Mexico
03/17/2004, 01:51:15


Hey Virginia,
I wish that I could have been there to listen to you ramble!

Shirley in New Mexico




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Re: Newby
Re: Newby -- Evelyn in AL Top of thread Archive
Posted by: Shirley Barr in New Mexico
03/17/2004, 01:46:23


Hi Evelyn and welcome to the bulletin board.
I just wanted to comment that your "severe burning" is probably due to dryness. Using preservative free eye drops frequently will usually help that condition a bit. Also applying a thin layer of pure petroleum jelly around your lids seems to help me. Sometimes doctors will recommend punctal plugs to help hold in some of the tears a little better. It is a simple procedure.
You also mentioned a very dry throat and mouth. There are other medical problems that can cause these symptoms in conjunction with the symptoms of dry eyes and blepharospasm. You might ask your doctor about this. Some medications can also cause the dryness of eyes, mouth and throat.

I also feel that it would help you to get a second opinion regarding the use of Botox. Sometimes a different doctor's technique is all that it takes to get good results from Botox injections.

I'm really glad to hear that you will be attending the next conference in Alabama. I've been to three myself and think that they are wonderful. I'll be there too and hope to meet you.

Shirley in New Mexico




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Re: Newby
Re: Re: Newby -- Shirley Barr in New Mexico Top of thread Archive
Posted by: Evelyn in AL
03/17/2004, 18:21:20


Shirley,
Thanks for the info and hope to see you in Birmingham.
Evelyn in AL



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