just diagnosed


Posted by tricia campbell , Oct 22,2001,11:45   Archive
My name is Tricia and I live in Coventry in the U.K. I have recently been diagnosed with blepharospasm and found this website soon after. My story appears to be very similar to those I have recently read about. About 12 months ago I started to develop a persistant squint which culiminated in my standing in the middle of a local supermarket just before last Christmas unable to open my eyes at all. I just burst into tears (luckily my husband Sam was with me - he has been so supportive during this last year). My doctor and optician were unfamiliar with BEB and put it down to a stress reaction. Even referral to an opthalmologist didn't help. As I had no signs of blephitis (which I now understand is very different), he too thought it was probably as a result of stress. After months of hypnotherapy, acupuncture and various other therapies and eventual referral to a psychiatrist I was diagnosed with BEB by a neurologist. I am now awaiting botulinum injection treatment. During the past year I have tried to cope and have developed lots of little sensory tricks like coughing and lifting my eyebrows, which sometimes work and sometimes not! I just wanted to tell you how important this bulletin board is to me. It has made me feel 'normal' again. It is great to know I am not alone and not going crazy. Thank you all so much, I will let you know how the treatment goes.





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Re: just diagnosed

Re : just diagnosed --- tricia campbell
Posted by Cynthia , Oct 22,2001,11:54 Top of Thread Archive
Happy to hear from you Tricia, but not always happy to hear about someone else having this frustrating disorder. I'm sorry that you have it, and hope that the treatment you get will be very effective for you! Let us know.
Cynthia in IL



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Re: just diagnosed

Re : just diagnosed --- tricia campbell
Posted by June in Toronto (June Floyd,June in Toronto), Oct 22,2001,12:14 Top of Thread Archive
Welcome to the bulletin board Tricia. Sorry to hear you have this disease, but you've come to the right place for support, information and a few laughs along the way. Good luck with your first botox injections - remember (in some cases) it takes a few sets before some people notice a lot of improvement with them. Take care

June in Toronto




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Re: just diagnosed

Re : Re: just diagnosed --- June in Toronto
Posted by tricia campbell , Oct 22,2001,13:02 Top of Thread Archive
Thanks Cynthia and June for your welcome to the bulletin board and your encouragement and support. I have to wait until November 7th for my first treatment. The neurologist I was referred to does not give botox injections. It appears that it is a specialised treatment that a limited number of neurologists practice (in the U.K. anyhow). I will let you know how I get on. Meanwhile I will read the bulletin board, and hopefully get to know you all. Thanks again - tricia.






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Re: just diagnosed

Re : Re: just diagnosed --- June in Toronto
Posted by tricia campbell , Oct 22,2001,13:05 Top of Thread Archive
Thanks Cynthia and June for your welcome to the bulletin board and your encouragement and support. I have to wait until November 7th for my first treatment. The neurologist I was referred to does not give botox injections. It appears that it is a specialised treatment that a limited number of neurologists practice (in the U.K. anyhow). I will let you know how I get on. Meanwhile I will read the bulletin board, and hopefully get to know you all. Thanks again - tricia.






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Re: just diagnosed

Re : just diagnosed --- tricia campbell
Posted by Edith Nalepa (edith nalepa,Edith Nalepa), Oct 22,2001,13:39 Top of Thread Archive
Hello Tricia, I am glad that your Drs finnaly figured out what was wrong with you, Many of us have gone through the same thing.After you get your injections it may take several days before you feel the effects of the Botox, but we all react differently to Botox.This group of friends will answer any questions you may have, in fact most of us know more than the doctors, and that is the truth.I will get Botox next week for my HFS, will let you all know how it goes. Edith in Fl.



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Re: just diagnosed

Re : just diagnosed --- tricia campbell
Posted by kathy , Oct 22,2001,13:43 Top of Thread Archive
welcome tricia, sorry you have this. always remember this is a physical disorder but stress and other factors can worsen it.



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Re: just diagnosed

Re : just diagnosed --- tricia campbell
Posted by Christel-California , Oct 22,2001,20:56 Top of Thread Archive
Welcome to the Bulletin Board, Tricia, glad you found us. It must have been a relief to finally have a diagnosis, after running from doctor to doctor. I wasn't exactly overjoyed to hear that I have an incurable neurological disorder, but at least it had a name and there were treatment options. Interesting that you were sent to a shrink also, I guess most of us were. Hope the Botox injections prove to be effective for you. Let us know and come back often.

Christel in Calif.




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Re: just diagnosed

Re : just diagnosed --- tricia campbell
Posted by Sally - in - Idaho , Oct 22,2001,21:28 Top of Thread Archive
Welcome, Tricia! I'm glad that you found this site so quickly; it can be a tremendous help and introduce you to new friends.

Your story sounds very familiar. You seem to be on the right track now and I hope that Botox will work well for you. I have been getting the injections every two months for just over two years now. They work relatively well, but are no cure. It sounds like you have good support at home. That's wonderful.

Tell us more about yourself as you wish, and come back often.

Sally in North Idaho BEB/Meige (My doctor told me last week that my hoarse, crackly voice is from the Meige)




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Re: just diagnosed/sally and meige

Re : Re: just diagnosed --- Sally - in - Idaho
Posted by kathy , Oct 24,2001,03:48 Top of Thread Archive
sally is this new?, did you not know this before?



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Re: just diagnosed/sally and meige

Re : Re: just diagnosed/sally and meige --- kathy
Posted by Sally - in - Idaho , Oct 24,2001,11:17 Top of Thread Archive
Kathy, I guess that I didn't really understand what the Meige does. Thought it merely pulled on the face and caused grimaces. I had questioned whether the hoarseness could be something new, a new branch of dystonia, so was somewhat surprised (and perhaps even relieved?) to hear that it was part of the Meige.

When I think back several years, it seems that the hoarseness came long before the BEB symptoms. I gradualy noticed that I could no longer sing.

Sally in North Idaho BEB/Meige




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Re: just diagnosed/sally and meige

Re : Re: just diagnosed/sally and meige --- Sally - in - Idaho
Posted by kathy , Oct 25,2001,05:56 Top of Thread Archive
thanks for the explanation. i think i have some meige in my lower face also; either that or it is the tightness from the winter wrinkles and chapped lips setting in from the dry air.



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Re: just diagnosed

Re : just diagnosed --- tricia campbell
Posted by Delaine Inman , Oct 22,2001,21:44 Top of Thread Archive
Welcome to our group. So sorry you have this frustrating disease, but you will find support and friendship here. Let us know how you are doing and ask whatever you want. There are no silly questions, but sometimes we do get silly to relieve the tension and tickle our funny bones. You are not alone.



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Re: just diagnosed

Re : just diagnosed --- tricia campbell
Posted by Lile , Oct 22,2001,23:47 Top of Thread Archive
Tricia,Welcome!I`m glad you found us,It`s easier when you have a name for our disorder(to find info).My story is a lot like yours icluding the psychiatrist( which I didn`t go to).The trail of Dr.s I went to gave me samples and a priscriptions each for Xanax,Zoloft,Wellbutrin,and Celexa.I never took any ,I was stubborn,maybe I should have .Imagine if I had taken all.One Dr. didn`t know what the other was giving me.I know some do take something to be able to cope.It probably would have been easier to handle the stress for me. Guess I wouldn`t admit I was out of control(sorta).Why else would all my stress break me (my brain).I guess it could have been a stroke and broken my heart.(Your weakest function goes).In a way we are lucky ,some people drop dead suddenly.I have been a lurker for almost two years.Maybe I believed if I didn`t post, I would not be one of US!Not everybody gets Beb due to stress,But I believe I did.I hope I`m not talking more then I should.Lile ,Tx.



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Re: just diagnosed

Re : just diagnosed --- tricia campbell
Posted by Joan Martin , Oct 23,2001,15:05 Top of Thread Archive
Hi Tricia just read your letter , I live in Peterborough and have now had three lots of botulinum injections due for my next lot next month.
It is good to read of people with the same "disease"" I felt quite a freak
Joan (england )



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Re: just diagnosed/joan

Re : Re: just diagnosed --- Joan Martin
Posted by kathy , Oct 24,2001,03:54 Top of Thread Archive
i definitely felt like a freak when i first got this and just wanted to hide away. it helped when people sometimes mentioned that they had no idea that i had a problem. i still hide away when my eyes are bad, until there is some semblance of normality and that i feel they will be okay for awhile. it is humiliating to be totally alone, in pain, have to go out for necessities and try and explain what you have to a total stranger.



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Re: just diagnosed/joan

Re : Re: just diagnosed --- Joan Martin
Posted by kathy , Oct 24,2001,03:55 Top of Thread Archive
i definitely felt like a freak when i first got this and just wanted to hide away. it helped when people sometimes mentioned that they had no idea that i had a problem. i still hide away when my eyes are bad, until there is some semblance of normality and that i feel they will be okay for awhile. it is humiliating to be totally alone, in pain, have to go out for necessities and try and explain what you have to a total stranger.



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Re: just diagnosed/joan

Re : Re: just diagnosed/joan --- kathy
Posted by Joan Martin , Oct 24,2001,15:27 Top of Thread Archive
Know what you mean about hiding away I should be going to a wedding on the 10th of November. NO WAY , I would rather stay at home that is the week before my injections can you imagine what my face will be like. Yes I know you do know what its like and so you will understand , but I didn't tell the truth I must admit I made an excuse . At my sons wedding people asked if I had ,had a stroke because only one side of my mouth smiled th other wouldnt move because the injections completely paralised the movement of one side of my mouth , so I would rather stay at home
Sorry shouldnt moan no where near as bad as some of the messages I have read
Joan (Peterborough)



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Re: Going to Weddings

Re : Re: just diagnosed/joan --- Joan Martin
Posted by June in Toronto (June Floyd,June in Toronto), Oct 24,2001,17:02 Top of Thread Archive
What a shame, Joan, that you have to miss going to a wedding in November - perhaps its not so important a one for you as was your son's. I had to attend two this past summer (both out of town) and I was very close to having my botox injections as well. I used Benadryl to help get me through it - I was prescribed klonopin but it didn't agree with me (I was like a zombie). We were the first to leave the receptions as they had professional video takers and the lights they used constantly were `killers'. However, I did it. The winter months are worse for me to go out in - the cold wind closes my eyes and in a car, the darkness of the night and the traffic, brake lights, etc., make it feel like I have fireworks going off in my eyes! Oh the joy of it all:-) Best wishes.

June in Toronto (beb/meige) who also is not moaning, just explaining!




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Re: Going to Weddings

Re : Re: Going to Weddings --- June in Toronto
Posted by Joan Martin , Oct 25,2001,04:08 Top of Thread Archive
Hi June you did great going to the weddings and I think you have a worse problem than I have, mine is one eye and my mouth , one eye is reasonable well , I cant stand the light and as you say car lights are something else, but as I say reading this board makes me realise how lucky I am ,I still have one eye, sounds like Nelson ha ha
Is meige the mouth problem ??
Take care
Joan (peterborough )



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Re: Going to Weddings/joan

Re : Re: Going to Weddings --- Joan Martin
Posted by kathy , Oct 25,2001,06:01 Top of Thread Archive
you don't have hemifacial spasm do you? from what i understand that is completely curable by surgery.



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Re: Going to Weddings/Nelson:-)

Re : Re: Going to Weddings --- Joan Martin
Posted by June in Toronto (June Floyd,June in Toronto), Oct 25,2001,12:42 Top of Thread Archive
Your `disease' sounds like hemi-facial spasm Joan - this can be fixed by surgery as it differs from beb. Meige can be in the mouth, jaw, tongue, etc - not much fun anyway you look at it.
June in Toronto



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Re: facial spasms/Nelson:-)

Re : Re: Going to Weddings/Nelson:-) --- June in Toronto
Posted by Joan Martin , Oct 26,2001,05:06 Top of Thread Archive
Hi June thanks for the info I always thought it was beb because I get injections in my cheek and chin for it which are the same ones as I have round my eyes , its great to have someone to get this information off
take care
Joan (Peterborough)



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Re: facial spasms/Nelson:-)

Re : Re: facial spasms/Nelson:-) --- Joan Martin
Posted by June in Toronto (June Floyd,June in Toronto), Oct 26,2001,11:49 Top of Thread Archive
Joan, you said "round my eyes" - if indeed you have botox injections around both eyes, then it is beb. If its only around one eye - its hemi-facial - I'm not a doctor, but that's the way I understand it.
Cheers June in Toronto



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Re: facial spasms/Nelson:-)

Re : Re: facial spasms/Nelson:-) --- June in Toronto
Posted by Joan Martin , Oct 26,2001,15:20 Top of Thread Archive
Yes June I have four injections but it is all down one side of my face
from eyes to chin ,
Joan



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Re: just diagnosed/joan

Re : Re: just diagnosed/joan --- Joan Martin
Posted by kathy , Oct 25,2001,05:58 Top of Thread Archive
i agree about some of the messages we've read. isn't the paralysis from the injections only temporary??



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Re: just diagnosed

Re : just diagnosed --- tricia campbell
Posted by Shirley-Arkansas-USA , Oct 23,2001,17:25 Top of Thread Archive
Hi Tricia, Just wanted to welcome you to our bulletin board (our sanity saver). As you can tell there are lots of really nice people here and is a place to come where you can feel "normal", ask questions, offer support, get support, just chit-chat and share information about BEB and every other topic that we might come up with.
Glad that you found us. Chime in anytime.

Shirley in AR. with BEB and Apraxia on a cloudy day and having my 3rd bad eye day in a row. I'm ready for a little reprieve.




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Re: just diagnosed

Re : just diagnosed --- tricia campbell
Posted by tricia campbell , Oct 24,2001,04:57 Top of Thread Archive
Just got back to my computer after a couple of days. It was wonderful to receive so much support and advice from you all. It was especially nice to hear from someone else in the U.K. (Joan from Peterborugh). I will let you all know how the botox treatment goes.

You know, hearing from you all has made me realise how much I appreaciate my computer. I guess this sort of communication would have been impossible even 20 years ago. Even after I was diagnosed, I still felt fairly isolated because so few people have even heard of BEB, it is so good to chat to others who really understand. Will post again soon.




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Re: just diagnosed

Re : Re: just diagnosed --- tricia campbell
Posted by Joan Martin , Oct 24,2001,06:36 Top of Thread Archive
Hi Tricia as we seem to be the only two from the uk at the moment I will send you my e mail address its joan.martin1@btinternet.com .
Joan(Peterborough)



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Re: just diagnosed

Re : just diagnosed --- tricia campbell
Posted by Nancie Shorts , Oct 31,2001,08:50 Top of Thread Archive
Dear Tricia:
I was diagnosed in January and have had 2 sets of BOTOX injections, the first in April and the second in September. I have to tell you they do help; however, at least for me -the results only last a couple months at best. I noticed while I was driving yesterday that I will never last until my next appt. with my neurologist which is March 5th!!!
I also have Spasmodic Torticollis and had the BOTOX injections in my neck and shoulder and that was August 30th. I had about 50% relief. I presently am going to the chiropractor and a massage therapist, hoping for additional relief. I agree about this website and this bulletin board.It IS great to know that you are not alone and not going crazy. I suffered for years before I even WENT to the doctor and luckily I was diagnosed on the first trip. Let me know how the treatment goes for you.



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Re: just diagnosed

Re : just diagnosed --- tricia campbell
Posted by Joann Humphrey , Oct 31,2001,10:02 Top of Thread Archive
This BB has been my support group and I'm glad you found it quickly. I was diagnosed with blepharospasm in Oct. of 99. Prior to that I had lots of blinking while driving, but it took a long time to get the correct diagnosis. I get the botox injections every 3 months which help for about 8 weeks. I also take clonazepam which helps, although it dulls my mind & I have to keep track of everything by writing notes & leave them out. I've had to change my activities & it's been a big adjustment for both my husband & myself. Fortunately I love my house, take care of over 30 plants, & feed & watch the birds. I only drive short distances, staying within a couple of miles of home. I'm 65 & thankful my kids are raised, so I have a lot to be thankful for.
Happy Halloween to all, let's hope is a safe one for all. Joann in Ark.



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