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| Tardive dystonia with new dx miege's |  | ||
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Posted by: Amy ® 02/20/2004, 22:11:12 |
Dear All,
I am new to this board. I have had tardive dystonia for four years due to a reaction to phenergan. This fall, however, I developed disabling facial spasms - complete locking of one side of the face and then the other. I receive botox and am doing well with the injections. After reading your posts, I have several questions as I have been enlightened tremendously. I have had light sesitivity all my life due to chronic blepharitis. I had not linked this or dry eyes with the blepharospasms, but I have noticed I have a hard time getting up in the morning because there is no water in my eyes. I litterally cannot open my eyes as the lids are stuck to the eyeballs and I have to rub them gently for quite some time before I can see or open the eyes at all. Also, I have slits and very dry skin around my eyes and in the corners of my eyes. Many times these even bleed. If anyone can share their experience or relate to this, I appreciate any and all input. I must say that I have struggled more with the Meige's than I have any other part of the dystonia and I have generalized severe dystonia. However, the facial involvement has been the most debilitating and painful part of all of it(and I even use a wheelchair and leg braces!). I have grieved more over the facial contractions and lost more social contact than ever before. I am thankful however for Botox as I cannot bear the contractions and don't know how I would get through it otherwise. I too use the sunglasses! Thanks, Amy |
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Posted by: Virginia in AL ® 02/20/2004, 22:46:54 |
Most of us have dry eyes and we have various ways of coping. Before I go to bed, I put petrolatum around my eyes and and cover them with a mask. You can also use preservative-free ointments, gels, or drops in your eyes. Since you have dry skin around your eyes, you might want to try the petrolatum on the outside. I don't have personal experience with blepharitis, but others on the board do and will probably post with their experiences. Sounds like you have been through a lot. Welcome to the BB and please ask anything you'd like. Virginia in Alabama |
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Posted by: Amy ® 02/21/2004, 02:39:45 |
Hi Virginia in Alabama,
I don't know if you have seen my other post replying to a message you sent someone else, but I was interested in where you are from in Alabama. I currently reside in Ga. but moved here from Birmingham, Al. I use UAB hospita (Kirklin clinic). my neurologist is there and also the dr. who gave me the last botox injections (they did not work as well as the ones I got in Ga. from a local ENT who is awesome). I wondered where you go for treatment. There is a new movement disorder specialist I am supposed to see at UAB and I am not real excited about it but thought you might know about him. If I am unsatisfied I may be looking elsewhere so thought you might have insight. So nice to have someone so close by who I can relate to. I am 37y.o. and have had this since I was 33. My husband uses UAB as he is a kidney transplant patient and my parents in law live in Calera(right outside Birmingham). Thanks for posting I look forward to hearimg from you. ( I know it is late but I couldn't sleep because of carpel tunnel pain - from using canes when I can walk). Thanks, Amy in Georgia |
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Posted by: Raymond Fudge ® 02/25/2004, 11:55:59 |
I work in Birmingham just a few blocks from Kirkland. If I may answer for Virginia on this point, we both use Dr. Kline at UAB Eye Foundation, aka Calahan Eye Hospital. Maybe Virginia can tell you, I have forgotten, but there is a neurologist that specializes in movement disorders at UAB Dr. Kline considered refering me to a few months ago. I hope all goes well and if I can help, let me know. |
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Posted by: Amy ® 02/26/2004, 05:09:29 |
Hi Raymond,
Thank you for your reply, it warms my heart and helps me remember we are out there for each other. I actually found Virginia and she has been sharing some with me. She has actually seen the MD specialist I have also been referred to at Kirklin. I really don't want to go Raymond. If you will, put your feelers out there about the bedside manner of Dr. Ray Watts. I actually have been using another neurologist at Kirklin for almost 5 years and do not want to change but she really wants me to see him because of his status and he is new there from Emory. Do they know there comes a time the best of the best is not what we are after, it is quality of life. My experiences have not been the best with the best of the best as they always want to overdrug me and forget I am a wife, a mom, and a person. Thanks for putting your ears out there for me! God bless. Amy |
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Posted by: June in Toronto ® 02/21/2004, 05:29:39 |
Hi Amy and welcome to the beb bb. God Bless you - you have a lot of problems to deal with and I'm not sure I can answer any of your questions. I've had beb/meige (but not meige as severely as you appear to have) for 9 years now - the botox helps me a lot. In the beginning of my diagnosis I had a lot of blepharitis problems as well - but I managed to basically get rid of this at first with a prescription medication and now with daily lid scrubs. You can use baby shampoo to cleanse but I use a lid care product I buy here in Canada. I also make really sure that my hands are super clean every time I put in the drops/creams that I do hourly 365 days a year. If I'm out and can't wash my hands I hold my eyelids open with a clean tissue (I don't use the hand sanitizer on my hands for this purpose as it stings my eyes). Blepharitis would cause your lids not to open in the morning I'm sure. My brother-in-law (who lives in Spain) told me he also has this problem and it was diagnosed as conjuctivitus. Keep your chin up Amy and I hope others will post back to you. Take care and keep in touch - we care. June in Toronto |
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Posted by: Amy ® 02/21/2004, 22:13:19 |
Thank you, June. i appreciate your response. Until I got I got on this board I did not make nay connection with the blepharitis but it seems as many people have it preceeding or in conjunction with the blephs. I think the startling part og this whole thing has been that it really just hit me so hard in the Fall without any warnings that I recognized.(the meiges especially).
I want to thank you especially for saying you care. It means a lot to me. It seems a sif i spent my whole professional carreer ( It wasn't that long as I became disabled at 33 and now am 37) as a psychotherapist and really caring about my patients but now as I have had my rounds with the medical profession I find how difficult it is to find anyone who really cares. It really saddens me and angers me. I can remember so many of my patients having conflicts with Drs. and Iwould go to bat for them. Now sometimes I feel really alone. It is all a process though and we learn. My life doesn't revolve around my disability as I am very active despite it and I appreciate every day with my family. The Drs. seem to want to drug me to death but I refuse too much as I cherish my friendships and family and would like to be clear headed as possible. I would like to know your situation. I'll keep an eye out on the board to pick up what I can gather. thanks for the info. on the blepharitis as I am bad not to keep drops or ointments in my eyes. I think I am going to give my opthamologist a visit. i also get botox but that is from the ENT. It is good to hear from you and thank you for responding. my eyes are hurting and my typing rpobably reflects it. Sorry. Talk with you soon, Amy |
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Posted by: June in Toronto ® 02/22/2004, 06:23:44 |
I'm glad you found us Amy - we try to help each other on this bulletin board. You are so young to have these health problems and with such a promising career - I can understand how devastated it all must be for you. In our own ways, some of us being older and towards the end of our careers, we have suffered from losing a lot of our independence with not being able to drive and unable to do so many of the things we used to. But, you know, there is a life out there for us. We just have to deal with our lot, learn as much as we can, smell the roses and move on. You WILL make it. Do help your eyelids/eyes by using lots of preservative-free drops and creams. At night try puting (as Virginia suggested) a line of pure white petroleum jelly across your eyelashes (top and bottom), then a cream (like Lacrilube) into your eyes, covering the eys with a piece of plastic wrap and then a night mask. You will find this helps to keep the eyes moist, and ease their pain - perhaps also, in your case, to help with the bleeding you mentioned. You wanted to know about my situation - well I was 55 when I was diagnosed with beb/meige (I diagnosed myself from a magazine article whilst vacationing in England (where I was born)) after trying for 2 years to get help from the doctors. I was working in administration in a university for 20 years and could no longer commute to work, let alone do my job anymore - I went on early retirement but managed to get disability after a year. I will be 65 this June (born same month as my name), so will be a true senior citizen:-). I found a great neurologist who has done a lot of injections for all kinds of dystonias and he has been my care giver these 9 years. I receive 90 units every 4-6 months but experience about 4 weeks of painful side effects afterwards. Then things improve and I go about my life as best I can. I am married 13 years, second time around) and we have 4 children between us (youngest 36 - your age!) and one grandaughter. My life is quieter, less stressful these days and I smell the roses. I do what I can each day, take eye rests, exercise and smell the roses. Take care Amy and let us know how we can help. June in Toronto, Canada who saw the movie "Osama" yesterday, which took place in Afghanistan, and I THANK GOD for being born here as a woman, and truly count my blessings. |
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Posted by: Ann Doyle ® 02/23/2004, 11:45:16 |
Before my myectomy , my eyes would stay closed for weeks at a time and I was blind. That was the worst. Now the Meige is my worst problem. I take advil and appy heat but it still hurts and when it is really bad I don't want to go oout. I don't mind my family except that they don't think it is a big deal. It is for me. Ann Doyle |
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