Re: 5-year point
I doubt that there is any real medical evidence to support that beb plateaus at 5 years and doesn't get any worse, or vice versa, Nikki. In general it seems that if you've had beb for that long it might not get any worse - but there is always the exception right? Also it has been known that dystonia (beb) can travel elsewhere - in my case it started as beb/meige and has stayed that way. It will be interesting to hear what others have to say. Best wishes.June in Toronto
Re: 5-year point
I had read somewhere that you don't get worse after 5 years as well but this has not been the case for me. While my dystonia hasn't spread to other areas of my body, the beb/meige has gotten worse and it has been almost 7 years for me. I'm not sure if I'm actually worse or am just not experiencing the same relief from BOTOX that I once was. All I can do is take it one day at a time!
Kelly
Re: 5-year point
Well, I finally found some information on this. It was from the BEBRF Main Page that can be accessed at the top of this BB page by clicking on it and going to Scientific Abstracts. This abstract mentions what I have referred to before. You can click on the link below and it will take you directly to Dr. Jankovic's paper which is rather long. I copied and pasted the below portion that pertains to the "5 year theory".
Hope this helps a little. I've heard something similar to this at a conference, I believe. There are no hard and fast rules on this as everyone knows but just a general guideline. There will be lots of variables. http://www.blepharospasm.org/99jankov.html
Prognosis and complications
Blepharospasm is a lifelong disorder in most patients. In two largest series, less than 3% of all patients experienced prolonged spontaneous remission [Grandas et al, 1988; Jankovic and Orman, 1984; Mauriello et al, 1996]. In one series of 238 patients, however, 11.3% were found to be symptom free after less than 5 years of blepharospasm [Castelbuonno and Miller, 1998]. Generally patients have progressive worsening of their symptoms during the first 5 years after onset following which the symptoms stabilize. Up to 15 % become legally blind. Complications of chronic untreated blepharospasm include "dry eyes", dermatochalasis (abnormal looseness of the eyelid skin due to constant pulling on the eyelids in an effort to keep the eyes open). In well over 80% of patients with blepharospasm, other facial, oromandibular, pharyngeal, laryngeal and cervical muscles become involved and the focal dystonia gradually evolves into segmental (cranial-cervical) dystonia. In addition to the obvious physical disability, the patients often experience uncomfortable "pulling" sensation behind their eyes. The partial blindness, discomfort and social embarrassment caused by the blepharospasm often leads to anxiety and depression; although psychopathology is remarkably rare in patients with blepharospasm [Scheidt et al, 1996]. --modified by Shirley-Arkansas-USA at Mon, Feb 11, 2002, 18:21:22
Re: 5-year point
Thanks Shirley. We can always count on you to go the extra mile!
Re: 5-year point
Thanks Shirley,
You surely are the Queen of pertinent information :-)
Mindy
Re: 5-year point
Also in Jankovic's article is the following information about a study "identifying several risk factors for spread of blepharospasm:previous head or face trauma with loss of consciousness, age at onset of blepharospasm and female gender" The research was done by Deffazio,Berardellis,& Abbruzzese in 1999. Does anyone have access to that full report?
Re: 5-year point/Linda
Do you remember what it said about the age of onset?
Kelly
Re: 5-year point/Linda
It didn't say anything, that is why I would to have the complete article.
Re: 5-year point/Linda
You seem to be pretty much up to date on some of these things. What are you getting your master's in?
Re: 5-year point/Linda
Thank goodness I have completed the master's program in counseling psychology - four years ago - it was in the last year of school that my eyes began to hurt and be light sensitive. The other symptoms of BEB seemed to develop slowly from that time. I am hoping the symptoms will not get much worse, which is why I am so interested in this topic. I will continue to search for the article - I think I found a source.At the same time, life goes on. I actually was able to help a child the other day who seemed to have developed BEB secondary to Tourette's syndrome. He enjoyed talking to an adult who understood what it was like to "tic." I work with children who have fewer restraints than adults. Some have immitated the twitching and eye closure, and others have asked, "What's wrong with your face?" (Hummm - my mother has wondered about that since I was born). Seriously, I am so thankful to have an answer now. Finally have an appointment with the local Neurologist on March 11th.
Re: 5-year point/Linda
That's great, Linda. Isn't it awful that this thing happens when you are trying to do something important to you?
Re: 5-year point/THE ARTICLE YOU MENTIONED LINDA
Linda, I found the ABSTRACT of the article you referred to - through a MEDSCAPE bookmark I have. It took a lot of `clicks' and I don't really know how I got it! But I did, then I tried to find the full article (they charge for that), but couldn't seem to get it. I'm going to ask my husband to try and get the full article at the Univ. of Toronto. Following is the abstract for people to read:Risk factors for spread of primary adult onset blepharospasm: a
multicentre investigation of the Italian movement disorders study group.
J Neurol Neurosurg Psychiatry 1999 Nov;67(5):613-9 (ISSN: 0022-3050)
Defazio G; Berardelli A; Abbruzzese G; Coviello V; Carella F; De
Berardinis MT; Galardi G; Girlanda P; Maurri S; Mucchiut M;
Albanese A; Basciani M; Bertolasi L; Liguori R; Tambasco N; Santoro L;
Assennato G; Livrea P
Department of Neurological and Psychiatric Sciences, University of Bari,
Italy.
OBJECTIVES: Little is known about factors influencing the spread of
blepharospasm to other body parts. An investigation was carried out to
determine whether demographic features (sex, age at blepharospasm onset), putative risk, or protective factors for blepharospasm (family history of dystonia or tremor, previous head or face trauma with loss of consciousness, ocular diseases, and cigarette smoking), age related
diseases (diabetes, hypertension), edentulousness, and neck or trunk
trauma preceding the onset of blepharospasm could distinguish patients
with blepharospasm who had spread of dystonia from those who did not.
METHODS: 159 outpatients presenting initially with blepharospasm were
selected in 16 Italian Institutions. There were 104 patients with focal
blepharospasm (mean duration of disease 5.3 (SD 1.9) years) and 55
patients in whom segmental or multifocal dystonia developed (mainly in the cranial cervical area) 1.5 (1.2) years after the onset of blepharospasm.
Information was obtained m a standardised questionnaire administered by
medical interviewers. A Cox regression model was used to examine the
relation between the investigated variables and spread. RESULTS: Previous head or face trauma with loss of consciousness, age at the onset of blepharospasm, and female sex were independently associated with an increased risk of spread. A significant association was not found between spread of dystonia and previous ocular diseases, hypertension, diabetes,neck or trunk trauma, edentulousness, cigarette smoking, and family history of dystonia or tremor. An unsatisfactory study power negatively influenced the validity and
accuracy of the negative findings relative to diabetes, neck or trunk trauma, and cigarette smoking. CONCLUSIONS: The results of this
exploratory study confirm that patients presenting initially with
blepharospasm are most likely to experience some spread of dystonia within a few years of the onset of blepharospasm and suggest that head or face trauma with loss of consciousness preceding the onset, age at onset, and female sex may be relevant to spread. The suggested association between edentulousness and cranial cervical dystonia may be apparent because of the confounding effect of both age at onset and head or face trauma with loss of consciousness. The lack of influence of family history of dystonia on spread is consistent with previous findings indicating that the inheritance pattern is the same for focal and segmental blepharospasm. June in Toronto (beb/meige)
Re: 5-year point/THE ARTICLE YOU MENTIONED LINDA
WOW! I'm impressed! THANK YOU, THANK YOU, THANK YOU!!!! I have printed it off and will mull over it later this evening.
I wish I had known someone like you while I was in school, who could help with all the research "stuff." It sure would have cut down on the stress level!
I am also finding a lot of helpful information on the tapes from the 2001 BEBRF conference. However, the doctors- even the best - can't offer what is available from the wonderful group of people on the BEB BB. Again, Thank You!
Re: 5-year point/THE ARTICLE YOU MENTIONED LINDA
Linda I believe (???) if you go into a search engine and type in Medscape, you will get into the bookmark I have. Then you click on to MEDLINE (somewhere there) and then do a search for BLEPHAROSPASM you will come up with PAGES OF ARTICLES on that subject. My eyes are really quite bad right with the eye headaches now and I'm not able to do it for long. There are a lot of articles by the same authors - they only show you the ABSTRACTS and I haven't figured out to look at the full article either (you have to pay to get the full article anyway). You can't even print the ABSTRACT, but I've figured out a wayto do that with 2 screens and cut and pasting!THE BOTTOM LINE IS THERE SEEMS TO BE A LOT OF RESEARCH GOING ON FOR BLEPHAROSPASM. Lert us know what you come up with. Best wishes June in Toronto (beb/meige)
Re: 5-year point/THE ARTICLE YOU MENTIONED LINDA
did you find out what edentulousness meant in layman's terms?
edentulous
Re: 5-year point
The five year theory has NOT been my experience. Having been diagnosed with BEB for nine years, and actually having BEB some years before that while seeking a diagnosis, I have had BEB and now Meige and other associated problems for well over ten years. The first five to seven were my "best" years, if there is such a thing as "best" when it comes to this miserable disorder. The last two to three years have been my worst, with increased and worsening symptoms. This last year I find my life greatly impaired, and going through terrible days. I am wondering how much worse it can get, after over ten years of suffering.Tim of PA hoping that others do get relief after five years.
Re: TIM
Hi Tim, I'm so very sorry that you are suffering so much. You are right that this is an awful disease - I don't call it a disorder, but that's a mute point. I'm praying that you are going through the worst now but your time will come when it will get at least somewhat easier for you. Hang in there - there's got to be better times ahead, I'm sure of it.June in Toronto (beb/meige)
Thanks June
June, your kind words and prayers are really appreciated. It is always a help to her from a fellow blephro who knows what you are going through. Since my symptoms developed over years instead of months, I guess I was not prepared for this disabling stage at which I have now finally arrived. And my doctors did not give me ANY idea of what might lie ahead.Tim in PA who appreciated your encouragement.
Re: Thanks June/Tim
tim, i can't keep up with everything sometimes. have you also had the surgery for beb? your picture in the newsletter looked so handsome.
Re: PRAYERS
Hi Tim, I'm so glad you responded. Sometimes we have to just get by a minute at a time, rather than an hour, a day or longer, don't we? I don't think the doctor's can tell us what lies ahead - they simply just don't know - in fact there isn't a lot that they do know about this disease.Are you being good to yourself - I know that sounds simple - but are you, for instance, using drops/creams all the time, using warm clothes over the eyes, taking regular, voluntary eye breaks, meditating in whatever way you chose? Forgive me if you have said this before, but I can't remember, are you going to a good movement disorder specialist? Do you feel he/she is doing everything they can for you? I'm sure you feel you have just lost control over this disease and you have to regain that even if its only to a minute degree. Enough for now, Tim. Spring is coming and YOU ARE GOING TO FEEL BETTER. June in Toronto who so prays for a cure to this disease.
Re: PRAYERS
June, I wanted to answer a few of your questions. I'm now using a new monitor (22") and everything is real nice and BIG that I can actually see it much better than before, and am hoping this will enable me to spend a little more time on the computer.
I use ointment every night, and have noticed that this made a difference. During the day, I find that using the GenTeal gel every couple of hours, and the drops, interspersed with hot compresses provide some temporary relief. I am resting more than I ever have in my life, as that was against my nature. Of course, the Klonopin four times a day helps with that, as well as the symptoms involving the face, throat, voice and breathing. I had Botox injections nine days ago, and as yet have no positive response. However, the neck and shoulder muscles have been extemely painful, more than usual. I take pain meds regularly to get through each day of eye/face and neck pain and headaches from the eyes. So it seems like much of my life is taken up just trying to survive. My doctor who gives the Botox is an Opthalmologist, and he is very good, desirous to help. I had been going to a neuro-opth some years back, but insurance changed and he moved to Virginia. My PCP gives me meds, and is trying to learn more how to help. He greatly encouraged me to go to the conference last year in Phoenix. As to meditation, I do enjoy and find strength in times of prayer and memorization of the Scriptures. Hope this has answered most of your questions. This week has been the worst BEB related time I have ever experienced, but keep going in whatever way I can when I can.
Tim in PA where I need to start some tomato plants inside soon if I am to have those great sandwiches this summer/fall. I prefer Big-Girl tomatoes over other varieties for their size and flavor and disease resistance.
Re: PRAYERS
I understand from your reply, Tim, that you are doing everything you can to get through your days as comfortable as possible with beb and more and you sound like you have good doctors whowork with you and a good attitude. I know what you mean about resting more than you have ever done - its against my nature as well. I've always been a mover - exercise was a big part of my life. I believe I remember you loved racquetball - I was a tennis and squash fan, but had to give that up. I like to walk and have a 400-acre park only a couple of minutes away, but can't during the winter months, because of the cold winds getting to the eyes and closing them down. I have justed started yoga and am finding that terrific - its in the building I live in so the weather dosn't bother me and I can close my eyes most of the time I'm doing it (a plus!). Talking books just aren't making (my) grade compared to books - oh how I used to love to read! I do hope you get some good results (eventually - mine take a month to work) from the botox injections soon. Enjoy that BIG computer monitor and look forward to those wonderful tomatoes in the summer. Best wishes.June in Toronto (beb/meige) whose eyes feel like they have barbed wire in - but for me that's a usual feeling for me after having botox.
Re: PRAYERS
Like the two of you I loved movement. Discovered running when I was 43 and then started racing and biking and aerobics. Now I can't even walk and have gained tons of weight. No excuse. I had thought of Yoga. I know they have videos of yoga. June do you think your instructor could recommend a yoga instructor? Ann Doyle
Re: YOGA
Ann, my yoga instructor lives in Toronto (same as I do) and doubt he would recommend an instructor for you in the U.S. Kelly Saffell posted a yoga link where she buys her videos, etc. I tried to do a SEARCH for that link but didn't come up with it and, at the moment, can't find the reference I printed and stored somewhere safe(?) about it. Kelly did the AM and PM videos from the store - I'm sure she will post again if she reads this or you ask her.My yoga instructor did recommend a book (with sketches) for me if you are interested: "Yoga for You" by....... Meyers (a woman who has a yoga studio right here in Toronto). I haven't seen it yet. Hope this has been of some help. June in Toronto (beb/meige) where we are getting wet snow this afternoon.
Re: YOGA/Kelly
Yes kelly, please post on this again, i'm interested also. can you describe the am and pm stretches you do, do they take alot of time, and where do you get them again?
Re: YOGA/ANN
I found the note/web site (below) that Kelly told me about - you can check the AM and PM videos there. They appear to be the beginner's videos and cost $18 U.S. each. Kelly said she was going to buy the Yoga for Flexibility an the Yoga for Relaxation video sometime soon. Hope this helps you Ann.June in Toronto (beb/meige) where its so windy today. Hubby had to drive me right to church instead of walking. Related link: http://www.gaiam.com
--modified by June in Toronto at Sun, Feb 17, 2002, 14:20:36
Re: YOGA/ANN
I have been doing the AM and PM videos for about a year now. The AM is very simple with basic stretches. The PM is a little more advanced and includes more stretches. I recently bought Yoga for Beginners which includes a booklet and teaches you the different poses and variations if you aren't able to do them at first. I also bought Lower Body Yoga. This is alot harder and really works your leg muscles. I bought both of these at Target but they have the whole supply on the website. I am going to get the Yoga for Flexibility. My husband and the kids bought me a little waterfall and an Ocean Waves relaxation CD and I play those while I do the yoga to help relax me. The videos are only about 20 minutes long so it is fairly easy to work into your day. I wish I had more time to do it but Cory will only stay in the other room and watch TV for so long before she wants to come "help" me.
Kelly in Dallas
Re: YOGA/ANN
Thanks ladies, the site is perfect. Just what I need. So much I don't know where to start. Ann Doyle
Re: PRAYERS/Tim
Yum! yet another beb gardener, There is nothing better than freshly sliced tomatoes on really good bread with mayo or a vinaigrette, salt and pepper. Tomatoes are also on the list of foods that are the best for you, altho they cause some people problems because of their acidity.
progression
Tim,
You made a good point about doctors not passing along information about the future. At my first appointment, I got the impression that I'd get BOTOX and be almost normal. It was only from the conferences and this BB that I became aware of the possibility of involvement of more body parts than just my eyes. I guess they don't want to scare you, but I would welcomed information on possible progression. Of course now I'm suspicious of every strange sensation I feel and wonder if it's another manifestation of the dystonia. I'm not trying to borrow trouble, I'm just trying to be aware of my body and what it's doing.
Virginia in AL, where it the daffodils are blooming and it's starting to look like spring. We will probably get our snow at Easter.
Re: progression
The oriental pussy willow shrub that I planted is now reaching towards the sky! i have harvested copious beautiful branches of it for the past 5 years. Should i prune it severely this year to try and contain it to a shrub state, Virginia?
gardening
Kathy, we don't prune ours back at the Garden, except for what you are doing. It all depends on how it fits in with your garden and the way you want it to look.
Re: gardening
okay, i think i will contain it to a shrub stae, else it will become impossible to harvest the branches.
Re: Thanks June
This is an excellent point made by you and confirmed by Virginia.
What I have discovered is that doctors are reluctant to talk about
progression and what can happen--they feel it may predispose us to
think we will get worse or whatever as Virginia alluded to. But, that
does not help prepare us for progression which I have learned about on
the BB and at the conferences and networking with fellow blephros.
For myself, if I have an idea what may happen, I will surely be less
frightened if and when it does. It's a delicate balance here again. I have concluded we have to network our own info and present our ideas and concerns to the doctors at which point they are obliged to respond
whether it be with regard to injection amounts, sites, meds, etc. That is also what usually triggers visits to more than one or two doctors!!
Joanne M. San Diego, CA
Re: 5-year point
Nikki:There is very little that has been 'medically proven' with the disorder of Dystonia of which Blepharospasm is simply one type of the whole which may or may not affect an individual. Usually it is a case by case situation of what your body is going to do. I've read that if it does not progress in the first few years, it probably will not. My own spasmodic episodes progressed at about a 6 monthly interval from onset. One point where I can counter printed 'rule of thumb' information. Dystonia is supposed to always stop while sleeping. Not so in many cases, myself included. Take care, Judy
Re: 5-year point
Judy,
This is from the same link Shirley provided.
Being that you feel your dystonia was brought on by medication, this might explain why yours is active while sleeping.
MindyClinical manifestations Unlike idiopathic blepharospasm, which is most prominent when the patient is active, secondary blepharospasm often persists during rest. This distinction, however, is not reliable enough to differentiate primary from secondary blepharospasm.
Re: 5-year point
Gee, we have touched a nerve here!!! :<) For myself, my first symptoms
began in mid 1997 so my five-year mark is this year. I have had a slow
progression of this disorder beginning with photosensitivity, and progressing to eyelid spasms, meige for me which includes throat/breathing dystonia and facial spasms (grimacing). I am currently getting some atypical sensations in my right jaw area. So, naturally,
I hope it stops here. But rather than dwell on that, I like Kelly's
idea of living a day at a time. For a while, I tried to figure it all
out (which we all do) but it wasn't working for me. Yes, I do my best
to maximize botox injection sites and amounts and regulate meds, but
that's it for now. Even though I have progressed symptomatically,
I am coming to terms with this disorder and I also have a better handle regarding my treatment which includes medical care and holistic approaches. We can never give up so we keep on keeping on which has
a different meaning for us all. Joanne M. San Diego, CA
Re: 5-year point
Hi Joanne,
You're absolutely right, we can never give up.
This is my eight year and has been my best.
Mindy in NY
Re: 5-year point
I'm so sorry you are having such a rough time. Not being able to do things with your small children is something that folks like Kelly can relate so well with you. With me my children are older, so my heart just goes out to anyone in a special way with this dis-ease we all have. As I've had support groups for 2 years, I have met people who have had this for 20 to 30 years and are doing so well that it gives me a lot of hope not only for myself but for others. I also have to very sweet ladies who started out with BEB and now after having this for many years their Meige is such a problem that the BEB is not nearly the problem it used to be, but they really are struggling with how much Botox and where to put it so they can eat, smile, talk, and swallow. When they talk about their BEB it is like I talk about my fibromyalgia. I thought it was a huge challenge until the BEB came along and now it is certainly in the back seat to this. I think Kelly & Joanne said it best, you take it a day at a time and deal with it and like Mindy said you NEVER NEVER give up hope or the realization that you are still here, alive for another day with the people you love and who love you and be thankful. That is very HARD sometimes and that is why you need a place you can VENT, SCREAM, CRY, LAUGH and try to see the big picture.
Re: 5-year point
Thanks, just getting in on your thoughts. After some 6-7 years it was recently that I asked my neurologists: "What can I expect ahead?" Then,"What is the worse thing that can happen to me now (beginning to recover from Shingles and Phleibitis which brought me down before the holidays)?" "For you to give up would be the worse thing," was his reply. OH, yes, I am a fighter, but there are times when I don't believe it about myself. The big picture--tell me more. Pleae do!
Re: 5-year point
Thanks, just getting in on your thoughts. After some 6-7 years it was recently that I asked my neurologists: "What can I expect ahead?" Then,"What is the worse thing that can happen to me now (beginning to recover from Shingles and Phleibitis which brought me down before the holidays)?" "For you to give up would be the worse thing," was his reply. OH, yes, I am a fighter, but there are times when I don't believe it about myself. The big picture--tell me more. Pleae do!
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