Re: hormone connection?
I have asked this question to the foundation. I noticed that the average age of onset was menopause age and that more women are affected than men. My question went one step deeper, however. I developed beb/meige at 26 right after giving birth to my first baby. I responded to botox but it never lasted 3 months and it was far from "perfect." After alot of research we decided to have another baby and I received botox during my pregnancy. I never felt better! My botox lasted the full 3 months and I almost forgot I was sick. I received injections 2 weeks before my delivery so I would be feeling ok to care for a newborn. Almost immediately after her birth, the shots went out the window. I had to get a booster just to get out of bed and my condition worsened (probably double what it was) with progression to my throat. I finally quit my job and at least now can care for the girls (6 and 3). I was told that hormones was a topic of discussion but that there are alot of triggers.Kelly in Dallas
Re: hormone connection?
Hi Jaelline. Several of us have brought up a possible hormone connection at various times. I don't know if much or any research has been done in this area. The most that I have heard regarding this from different doctors is that they don't believe that it is related. I don't know what they are basing this on, though. Like you mentioned, I feel that it possibly could be a trigger.I had a complete Hysterectomy in 1993 when I was 42 and have been on HRT (Premarin and Estratest) since that time. My symptoms of BEB started two and a half to three years ago. I had PMS and depression problems which I sought medical help for before that time. I was happy when most of those symptoms/problems disappeared after the Hyst.
When I first developed BEB, the hormones were one on the things that I stopped to see if it would make a difference. I systematically stopped one medicine at a time for periods of a month or two, to see if my symptoms changed. I could tell no difference. Hormones were one of the things that I suspected initially, after contact lenses and allergies. Shirley in AR.
Re: hormone connection?
Jaelline, I have been taking hormones for 21 years.
(Premarin & Provera)
I stopped taking them last month. Will see if anything changes Colleen in IL
Re: hormone connection?
I suspect there is a hormone connection too, but just try to get a doctor to admit to it if he/she didn't think of it first!! What do we know? We are only the patients!Dee in OR where I'm feeling very cynical at the moment
Re: hormone connection?
Not patients, Dee. At this point, I feel we are guinea pigs. Mary
Re: hormone connection?
this is a very interesting way to look at and tackle our disorder, because hormones majorily affect our entire bodily systems. let's keep up on this.
Re: hormone connection?
I've thought for a long time that there was a hormone connection, but mainly because at the time of life that it usually would start & so often with women. I have not been able to take any type of estrogen. It has made me very depressed & also made my bleph. much worse. Taking it didn't seem worth it to me.
Billie in Kansas
Re: hormone connection?
Jaelline, I did not go to the conference this year, but if you had gone last year, your husbands theory would have went out the window. I think that most of us there had very little hair. I know that I certainly do not. Who knows however, their may be something to it but I suspect that it is more genetic in nature and someone just has to be predisposed toit and then have the right triggers such as stress touch it off. I am also not so sure that Botox, once given effects the progress of the disorder in a negative way. O know that the answer to that is that the disease would have progressed worse anyway but I am not so sure. I will never really know as I am one who jumpedin and started taking it right away. Even though it did not work, I do know that my condition deteriorated pretty quick after the first set of shots. My brother and sister who had BEB also, have resisted taking anything and are still able to drive and read and do many things even though htey do have severe squinting and blinking and have the effects of light bothereing them. I hesitate recommending that they get the injections. I am probably all wet but it is something that has bothered me in the past and I will never know if Ithere is any validity to it....Alan
Re: Botox or meds?
Hi Alan,
Do your brother or sister take any medication to control their symptoms? If the answer is "no" then I would assume that they may have a much milder case of BEB. My symptoms were extremely severe before I ever took any botox or any medication for it. I was unable to drive or watch TV or walk down a hallway. I was shut down. My eyes have never been worse than they were at that point. I have had further symptoms in jaws and lower face since the botox but feel that would have occurred anyway and seemed to be related to how bad my eyes were.So, I would be interested in knowing if they are taking medication for this. I just believe that different individuals have varying degrees of severity of symptoms with this which would only be logical. I almost hesitate to even say this as a long time ago someone on this board got quite upset with me for insinuating that my symptoms might be worse than theirs. Whatever. Shirley in AR.
Re: Botox or meds?
Shirley, I'm perfectly willing to back you up on this, different people do have varying degrees of severety of symptoms. From all I've read yours are much worse than mine. I don't take Botox, did 3 times about 2 or 3 years ago, (CRS) and after trying different meds, nothing was really effective. The only thing I take is Ativan. I cannot drive anymore, but I can read and watch TV most of the time, sometimes well, sometimes just squinting and sometimes I keep my eyes closed and just listen, squinting occasionally. Although my eyes are light sensitive, by far not to the degree as most of you experience.
My eyes don't hurt, I need drops only occasionally, I don't need to wear a beauty mask.
My eyes do clamp shut, often for a minute or more. I do trip over things and run into things regularly. Shopping is never a good experience and I've given up on window shopping alltogether. I'm worse outside the house and especially in a crowd of people. My eyes don't stay open when I'm talking to someone or being talked to and usually my meige acts up and I have difficulty talking. I don't have good days very often, but I can live with what I have, though when the whole face spasms, eyes and lower face, it's quite exhausting and I'm constantly tired. But considering what I read here on the board, many of you are worse off.Christel in Ca. where it's finally cooling off.
Re: Botox or meds?
Shirley, my brother or sister do not take any meds for the BEB other than Benadryl on occasion. I realize that they do not have anywhere near the case of it that I have and I pray that they do not get any worse. I really feel bad however because when I look at them, I start to see the progression of my own case. I keep telling them to watch the stress and both of them are in very stressful situations. My brother went through a divorce and is trying to put three boys through college and my sister lost her husband to cancer and has had a hard time dealing with it. I try and help as best I can. I made the comment about the botox in my case as I always wonder what would have happened if I had not tried it in the first place. I did the medication route with little success. My eyes had not shgut down completely although I did walk into people and things on a regular basis. At least I was still driving back then. Anyway, I could never get upset at you and only feel bad when I hear about people who have it worse than I.
Re: Botox or meds?
Thanks for the reply, Alan. I'm glad that your sister and brother seem to be having much milder symptoms than a lot of us. None the less, I know that it is frustrating for them and cause for concern. They may never get any worse, Alan. I really think that there are a lot more people out there that do have milder symptoms and never seek treatment or diagnosis. They could even get better, especially if some of the stress was reduced. We'll sic Mindy on them. :-)I'm sorry to hear about your brother's problems. Divorces are usually very stressful. I speak from experience from a long time ago. Just glad that I did not have children at that time.
I'd also like to express my sympathy to your sister in the loss of her husband. I'm sure that you are helping out a lot. I perceive you as the "strong one" in your family and able to deal with most anything. Big load to carry, huh? You did what you had to do for yourself when you tried the medication and then the botox and then the surgery. Don't be second guessing yourself. You can wonder all you want about it but if you look at it and use all your knowledge that you have about BEB at this point, I think that you would know that you made the right choices for youself and didn't make anything worse. Shirley in AR. thinking that it has been an awfully long time since I last picked on Alan. Hmmmm.
Re: People with lighter symptoms
Shirley, I can think of several persons who've posted on here in the fairly recent past ... stayed around briefly and some even posted regularly, then all of a sudden dropped off the edge. When I contacted a couple of them, their answer was that they were doing so much better and felt no need of this BB any longer. I'm sure there are many, many out there who have fairly light symptoms, just annoying ones, and are still able to carry on much as usual.Sally in North Idaho who wishes she had light symptoms, not light sensitivity!! (Play on words.)
Re: People with lighter symptoms
Sally,
I'm glad that you posted that. I think that it gives people some hope, especially new people. It certainly won't happen that way for everyone but it does happen and people are able to go on fairly normally with minimal treatment. You are good to check on people when they stop posting. It is nice to know the reason why. Thank you for being so caring. Shirley in AR. who has enjoyed doing her son's laundry this weekend. I'm serious. I can still do that for them.
Re: People with lighter symptoms who haven't posted lately
Hi allIts been a while since I posted. The last time was around the time Shirley posted her post op pictures. In the month of May and June I was totally consumed by a Membership Drive for our community (500 members)
I have been the director for 3 years and just gave notice that it would be my last. (funny how working of the computer does not bother me) Around the middle of June my computer crashed and as I was going to the cottage for the summer anyway, did not see the need to get it back up right then.
I returned from a great 2 months in Northern Ontario, just north of Parry Sound. It was a perfect place to be. I thought that with the humidity that my eyes would be better but 3 days after I arrived my punctal plug fell out. It took 14 long distance calls, a boat ride, and 1 neighbour to drive me 1 1/2 hours and repeat this again the next week after finding out they had to order the plug! I had given them the size and had my own doctor call them but they still wanted to examine me first!.
My eyes improved so much after having the plug put in that I could do the 1 1/2 hour drive home.
Around the 2 week in August I got what appeared to be a bug bite on my bad eye. Used antibiotics but it would come and go. This week I finally saw my doctor who say I have a blocked gland. I have been telling them that I have always felt that something was in or on my eye since the surgery. Now i will see another eye surgeon to see what he can do. Hopefully that is why my eye still does not close 18 month after my surgery
All in all my syptoms are now mild and I am able to do most things again. I try to get rest and keep the stress level down. June... Have you found any silk eye mask that they were talking about a while ago
I promise keep checking the board and if anyone has any questions I would be happy to answer them.
I am very thankful for this board. It has help me much more that I can ever express in words. I love to read those postings that are so eloquently written. It is truly a gift to be able to express oneself.
Catherine in Calgary
Cat
Re: People with lighter symptoms who haven't posted lately
Hi Catherine, welcome back - glad you enjoyed Parry Sound, but you certainly had some problems with your eyes that you could have done without! Glad to hear you've got a handle on the stress problems -tha tcan do so much harm to us.I haven't looked for any `silk' eye masks - I have quite a collection of masks from my airline travels - some nylon, some plastic-type, some double-sided with a cotton backing, etc. - I use them all but make sure I have a soft cotton cloth underneath that gets washed every day, to counteract any infections from the overnight creams and sweating. I wanted to tell you that they are finally stocking Gen-Teal eye-drop products here - but I don't like them as well as the Refresh products. Take care. June in Toronto
Re: People with lighter symptoms who haven't posted lately
June, I think that you have a good idea and thoughts regarding the masks. I agree that they must be kept clean. I, too, put a soft cloth-actually what I use are cloth diapers that have been cut up and then I fold them to the right size and put that over my eyes with a mask over that. I change these out daily. This added cloth also applies just enough pressure to keep my eyes closed.
It doesn't really take much for us to get an eye irritation or infection. With all the problems that we have with our eyes, we have our hands and fingers around our eyes quite frequently thus exposing our eyes to a lot of bacteria. I try to keep my hands washed as much as possible for this reason, also.Shirley in AR.
Re: Masks
I also like the feeling the mask gives me - one of security (like a blanket:-) with just enough pressure to make me believe my eyes are comfortable, well lubricated, not blinking, squeezing, spasming, etc. - just ready to rest and go to sleep - what a lovely feeling after a difficult eye day!June in Toronto
Re: Masks
June, If the mask and cloth are a security thing, then it must be called a "bankie". :-)So get your bankie and go nite-nite. Sweet dreams. Shirley, headed for dreamland myself.
Re: Masks
JuneI have found that the mask available here are too hot. I bought a lavendar filled eye pillow from The Bath Shoppe that is lighter and made of satin. I love it, but it would not stay in place when I went to sleep. My friend is making me a cover with velco straps and stitch the pillow down the middle so the seeds do not fall to one side and it fits over the eyes. It is then just heavy enough to keep the eyes closed but not be too hot. Will let you know how it works when she gets it done.
Catherine
Re: Masks/Lavendar
Catherine, I was given a lavendar filled eye pillow a number of moons ago - I couldn't tolerate the smell all night (so close to the nose!) and I LOVE lavender usually. I hope it works better for you.June in Toronto
Re: People with lighter symptoms who haven't posted lately
Hi Catherine. Good to hear from you again. I'm glad that you do well most of the time.
Bum deal about your punctal plug and having to make a second trip and having trouble with the blocked gland. I read somewhere that when you have a myectomy that the glands that produce the tears are effected as that is part of the area that is worked on and sometimes it causes them to produce either more tears or less tears. I think that in my case they are producing more.
I have kind of a lumpy area on my right upper lid that gets tender and sore and red and that is the eye that is doing the most tearing, now. I'm kind of curious as to what is going on there. I may have to get it checked on, also.
I'm glad that you posted. keep in touch with us.Shirley in AR.
Re: masks
ShirleyI would get that looked at right away. I always thought that something was not quite right in the upper lid and now 18 months later it is still red and sore looking. At first I went to a plastic surgeon thinking that maybe I needed a little tune up but she told me it had nothing to do with the cosmetic side of things. Now I just got in to a specialist that can do this and my appointment is not until Jan 11. I beg and practacially cried and then they said that they would put me on a waiting list. Now I think I need another round of Botox but don't know what to do!
On all other counts every thing else is great (except I would like t loose a couple of pounds) lol Catherine in Calgary where it is about 82 and sunny but the leaves are turning already
--modified by catherine pender at Wed, Sep 26, 2001, 00:35:45
Re: hormone connection?
WELL I AM 49 YEARS OLD AND ONLY HAVE HAIR AROUND THE EDGES, VERY LITTLE ON TOP. I WAS DIAGNOSED 2 1/2 YEARS AGO. I LIKE ALAN HAVE HAD SEVERAL TREATMENTS OF BOTOX WITH NO SUCESS. MY LAST TREATMENT WAS ALMOST 2 MONTHS AGO MY NERUO WANTED TO TRY MYOBLOC SO WE HAVE STARTED WITH AN EQUAL TO 50 UNITS OF BOTOX A. I AM SORRY TO SAY THAT HAVE NOT SEEN ANY IMPROVEMENT TO DATE. MY DOC HAS NOT PERSCRIBED ANY MEDS AS YET. I BELEIVE THAT HE IS GOING TO INCREASE THE AMOUNT OF BOTOX B MYOBLOC NEXT MONTH WISH ME LUCK. SORRY IT HAS BEEN SO LONG SINCE I HAVE POSTED BUT I AM STILL WORKING AND DONT GET MUCH CHANCE TO CHECK THE BEB. STEVE- IN TENNESSEE
Re: hormone connection?
It is good to hear from you. So sorry the Botox wasn't working and Myobloc hasn't helped. Don't give up. Hope to meet you soon in Nashville in Oct. Speaker had to bow out but someone from her office stepped up to the plate so I breathed a sigh of relief.
Re: hormone connection?
jaelline, i was going to comment how cute you looked in the conference photo, but that seems forever ago now...
i am taking premphase and i definitely seemed to have noticed my eyes were worse during the testosterone phase of it. i have been thinking about this and glad you brought it up. i am also a lot more tense during that phase of it.
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