Re: Any new people have questions?
From a "newie":Still working on getting myself back together mentally. Go to see the Neuro-Opth on Wednesday for the six week check-up after the first set of Botox injections. Have a long list of questions. So far not real happy with results and hope it works better next time. He has talked to me about surgery for the droopy eyebrows and eyelids, so am really interested in Shirley's pictures. I have a question around if any of you have been to any type of therapist to help you cope with dealing with this or not. I am feeling so overwhelmed with this and the Fibromyalgia. I would like someone to work with me on some things. I have this wonderful book on Fibromyalgia written by a doctor with this disorder that suggests ways to pace yourself and work on things as you can. Maybe the group could come up with something like this for the recently diagnosed. Coleen in Cental PA where it is raining a lot today and had to go to work and not enjoy the outside anyway.....Take care, everyone.
Re: Any new people have questions?
I believe that we have had several people on the board that have sought the help of a therapist in dealing with this. It can definitely be overwhelming and and some sort of counseling might be very useful. Others have learned about stress management and others have seen hypnotists. Sometimes we need more than our friends or family members to help us out and talk to us and let us tell them our fears. Sometimes they just don't understand. Maybe some others can speak to this, that have sought this type help. I would recommend that you not rush into any surgery at this point. It is not a cure but a permanent treatment with widely varying results depending on who does the surgery and the problems that you have. Give the botox a few more tries and if you still don't see improvement, try a different doctor. They all do things differently and have different techniques for injecting which sometimes makes a difference. You can also explore different medicine options. Some of the doctors will prescribe them and some won't. I'm glad that my pictures have been of interest to you. I will try to keep everyone posted on my progress and what and if my symptoms improve. One more comment on surgery options. Don't let anyone operate on you that hasn't done a great number of this specific type of procedure. The first oculo-plastic surgeon that I saw that started me on the botox would have operated on me also, but when I asked him how many he had done, he replied 2 in the past seven years. I chose someone who has done close to a thousand. There are others out there that I believe also do a good job, just know what you are getting into and don't let anyone "practice" on you. I'm sure that you will get some more replies. The people that have sought the type help that you are talking about, haven't been posting lately so I hope that they are reading and just being quiet and will respond to your post. Shirley in AR.
Re: Any new people have questions?
coleen,I'm interested in that book about Fibormyalgia. What's the name of it and who is the author? Thanks!
Re: Any new people have questions?
Patti,The Fibromyalgia book is "Fibromyalgia & Chronic Myofascial Pain Syndrome, A Survival Manual" by Devin Starlanyl, M.D. & Mary Ellen Cop;eland, M.S., M.A. It is a big thick book. Do you or someone you know have Fibromyalgia? Coleen
Re: Any new people have questions?
pacing yourself as to what you can and can't do is extremely important or you will wear yourself down and get sick and then blame yourself. sometimes large motor movements that require very little brainwork are the only things i can do, both eyewise and brainwise, like laundry and housework, it is depressing to have things pile up and look bad when on a clear day you can see what your non-functioning eyes have left you with. Sometimes the physical expenditure tempers the mental anxiety. i figured this out myself. regular exercise is very, very important even if you have to force yourself to do it, which i do and don't always get done. today i couldn't, altho the weather is beautiful, the wind, drop and temperature , and extremely bright sun, kept me frustrated and struggling to keep my eyes open.
Understanding & Coping
Coleen:When BEB/Dystonia first steps into our life it has the effect of a door slamming us in the face. The door was not expected, it hurts and our life changes. A small child when hurt crys. So too, do we. We cry for the pain, loss of our previous perceived 'self', out of bewilderment for the future and for monetary loss if we are forced to quit work. We hurt when others stare, make rude comments or just quietly fade from our life. This is no easy trip. Each of us on this board have experienced all of the above. Reach out to us and we will answer back. Therapy, in the hands of a 'good' certified person is often very helpful. When I first started down this path I chose exactly that route. Did it help me. You bet! I still go from time to time to clear my head. You quickly find that family and friends (though well meaning) not only don't understand, they have a vested interest in you remaining the same person that was before. Talking/dumping my gut, has helped me immensely. I've also used the SSRI, Zoloft with good results. It's not for everyone, however it has helped me. Put one foot in front of the other ........ Judy
Re: Understanding & Coping
I take Zoloft it helps me a lot.Does anyone know of anything that i could take for pain? The pain is really bad & i cant take any more shots until June 11.
Colleen In IL
Pain ...
Colleen:Describe. Do you spasm anywhere other than your eyes? Fibromyalgia in itself is quite painful (my husband has been Dx'd with it). Judy
--modified by Moderator-JB at Thu, May 24, 2001, 08:43:03
Re: reply to colleen on pain
I have taken Celebrex only as needed for pain for my last 2 injection periods. i have to try and last 2 more weeks til my next set. It helped immensely the first 6 week period, so much that i couldn"t believe it. It is still helping quite a bit, but I have had several days this period where almost nothing helped; maybe it's the increased heat and sunlight at this time of year. All i know was that last year at this time I was in agony for weeks. this so far has helped me.
I would also like to know what others are finding effective for pain, I'm sure there has to be more than that out there.
--modified by kathy at Thu, May 24, 2001, 09:08:22
Re: reply to colleen on pain
It is not my eyes that hurt.when my eyes & mouth close my forehead
back of my head,neck & my teeth hurt really bad until they open.
Itake Aleve it helps some but not much.
Colleen In IL
Re: reply to colleen on pain
Colleen, are you the same one who has Parkinson's disease? the one I talked with before? Apparently there are only a few of us posting on this BB today. Could someone else help or respond to her, please!!
Descriptive website/WE Move
Colleen:What you are describing sounds like it may be Oromandibular Dystonia. That together with Blepharospasm is called Meige. Been there, still doing that, definitely no fun! Neurontin and Klonopin are Rx's that I use to help with spasms. The pain is usually caused from the muscles tighting/spasming. Here is an excellant link for all types of Dystonia. http://www.wemove.org/dys_pinf.html I've also used Tylenol 3 for pain. (prescription) You need to see someone that specializes in movement disorders. Usually an Optho or Neuro-Op will not speak to spasms in other parts of the body. Have a better day, Judy
--modified by Moderator-JB at Thu, May 24, 2001, 17:30:14
ReNeurontin-Judy
Hi Judy,
You've been on Neurontin for some time now, I was wondering how you're doing?
When I was on it, my brain went to mush.
My short term memory was giving me problems with Parsitan, cutting back on the dose helped.
Mindy
Neurontin
Hi Mindy! How are you doing?It is a good med for me. Recently I cut it back slowly to consider switching to something less expensive. Though my insurance does an 80% reimbursement there is still that immediate $117 out of pocket for a one month supply. (300 mg. x 3 per day, which is a relatively low dosage) After two weeks of painful muscle spasms, demonstrative restaurant outings (Mother's Day Brunch was a real winner!) and then back to the old - pacing the floor at night because I couldn't sleep, I am now in the process of ramping back up on it. Quality of life is important. There doesn't seem to be any adverse side effects for me, which is a real plus. Take care, Judy
--modified by Moderator-JB at Sat, May 26, 2001, 12:55:51
Re: Neurontin
Hi Judy,
I'm very glad to hear the Neurontin is helping you.
I am doing very well, and I hope others are encouraged
by this.
Best Wishes,
Mindy in NY weather has been drizzling or raining for days,
mushrooms are growing in my lawn
New person
I am a new person in this group. I am a teacher and haven't had the time to participate. But school is almost over (hooray!) and I plan to participate more often during the summer. Hello to Mindy and THANKS SO MUCH for telling me about the drug Parsitan. I have ordered through the same place in Canada that you use. My doctor talked to your doctor (Bressman, I believe) and my husband arranged it. It is helping me a great deal! I still have dry mouth but no ulcers.
Actually, last Wednesday I had a symptom free day! I am on Botox B (Myobloc). I have gone every 6 months. My doctor is the director of a Movement Disorder Institute here in California. I have no pain (except for the shots themselves - OWEEEE - as we say in 1st grade!). Talking used to keep my eyes open, but doesn't work so much anymore. I do hum a lot. Another thing that has helped my mouth is a supplement called Lysine. I also take Vitamin B of some sort and see an accupunturist. I will try any and everything! I refuse to quit my job and sit home. My biggest problem is driving. My school is 20 minutes away. The only good part about this whole thing is that the drugs wipe out my appetite. I have lost 25 pounds and got a whole new wardrobe! YAH! At least there is one benefit! Thanks for listening! Shelley in California
Re: New person-Greetings
Hi Shelley,
Welcome to our group. I was a school nurse up until about 2 years ago. I finished out a school year (just barely) before my symptoms took a major nosedive and I was unable to drive or walk down a hallway. Glad that you met up with Mindy. She's a wonderful person.
It is good to hear that you will be able to spend some time with us this summer. This group could indeed use a first grade teacher. :-)
I'm sure that you could teach us a few things.I've also tried acupuncture, but didn't have any luck with it. Most of us have tried all kinds of things out of desperation. Again welcome and ask questions or comment whenever you like. Shirley in AR.
Re: New person
Hi Shelley :-)
I am elated and thankful to hear the Parsitan is helping you.
How long have you been on it and how many mgs. are you taking?
My chiro used to give me accupunture with an accupunture gun, not needles. I was able to get them all the time because it didn't cost me anything. It helped to take away that pain in my temples that come from the muscle spasms.
Do you practice some type of stress management?
I wish you much luck with your therapist appointment
tomorrow.
I'm so glad you will be posting here, everyone is so
kind and supportive, and lots of fun.
Big Hugs,
Mindy
Re: New person
Hi Shelley ... Welcome aboard this board! I like your positive outlook and sense of humor ... they will overcome a lot! I was a school librarian and secretary for many years. Loved it and miss working with all the teachers and kids. (Sometimes.) Most days, however, I'm content to be out of it as I know I couldn't function in that setting. Botox every two months keeps me going fairly well.Come often. As Shirley says, we can use some teaching around here! Sally in North Idaho where it has been cool, sunny, cloudy, windy today.
WELCOME TO SHELLEY AND OTHER NEW PEOPLE
Hi Shelly, welcome to the bb but sorry to hear you have beb. You seem to be very positive and I'm sure that will help you a great deal. I'd be interested in knowing exactly where the acupuncturist places the needles - not the same place as the botox injections are given I trust?I've had beb for 6 years and had to leave my job at the University of Toronto (support staff for 20 years) because of it. I've had some physical and personal problems lately and haven't posted much in the last few months. I'm hoping to get back to it soon as you will find there are a great bunch of people here - a wonderful support group - a little `nutty' sometimes, which we all need from time to time, to help us deal with this strange disease (complaint, problem?). Again, welcome and look forward to hearing from you again. BEST WISHES TO EVERYBODY OUT THERE - ITS BEEN QUITE A WHILE SINCE I'VE BEEN ABLE TO POST! June from Toronto
Re: WELCOME TO SHELLEY AND OTHER NEW PEOPLE
Hi June missed you hope things get better.Having beb is enough.
Iwent to my naurologist today (not the the one that gives me my shots).the one where i live. When she came into the office my eyes & my mouth was shut & i couldnot move she was asking me questions & all i could do was grunt a little. When everything starting working she had no idea what was wrong said it didnot go with beb.Iwill go back to St Louis. Good thing i have a good sense of humor i really need it.
God Bless Colleen in IL
Re: WELCOME TO SHELLEY AND OTHER NEW PEOPLE
Someone asked about placement of Botox shots. I get 4 injections around each eye, and last time I got 3 about and 3 below my lips. He varies them each time. At first, he hooked me up to a little machine (like a geiger counter) to listen for movement while the needle was already in my face. It was SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO painful. We don't use that anymore. He's experimenting.And I agree with Mindy about stress....... must be managed! I went to see my therapist for the 1st time and as I talked to her, my symptoms began to subside.
Shelley
EMG ...
Shelley:The lead attached to your Botox needle is for an EMG machine. When the needle hits muscles that are spasming the EMG makes a continuous humming sound. (it does indeed sound like a geiger counter) I can see where it would be painful if used around the eyes. My doctor uses it in the deeper muscles of the neck and jaw. Nice to have you aboard! Tell us more about yourself. Judy
blkmn36@earthlink.net
--modified by Moderator-JB at Wed, May 30, 2001, 08:39:37
Re: EMG ...
Dear Judy - thanks for clarifying that. He explained it to me but I was in such a DITHER I couldn't remember. I ama 50-going-on-51 year old and a first grade teacher. I am married with an eight year old son named Max. I am desperately trying to keep working and so far, so good. But I am very tired all the time. However, I feel hopeful. I was diagnosed immediately and have access to all treatment and medication that I need (excellent insurance). I am also thankful to be treated at a research center. And one more thing.......I have a HELLUVA time trying to maneuver (sp?)in this site. Is this just me, or maybe old age? Shelley
Re: EMG ...
Shelley ... Can you put it in your "Favorites?" My grand-daughter set mine to go to the main page and then I just click on the "bulletin board" line, and here I am! I know the end-of-school feeling well. I was a school librarian/secretary for many years. What fun, but also what chaos this time of year. Sally in North Idaho
Re: EMG ...
Shelley:You're certainly in the main age bracket for BEB. I was just about to turn 50 when my number came up (now 54 and retired on disibility). 'Desperately trying to keep working' has such a familiar ring to it!
We each experience fatigue more than the norm. Your body is fighting so hard to maintain that it is overtired. Check out your Short and Long Term disibility employee benefits in case you need to use them. Describe the problems you are having with the bulletin board. Take care, Judy
blkmn36@earthlink.net
Moderator
--modified by Moderator-JB at Fri, Jun 01, 2001, 00:58:33
Navigating this Site
Dear Judy, Thanks for answering. Okay, I get into the site, read page one, go to page 2. Then at the end of page 2, it says I am on page 1. I feel like I spend most of my time trying to find my place! "Where Am I" prompt describes it to a "T"! I also have a feeling this is at least partially due to my movement problems! No patience, use all that up at school. No memory - no coordination.
Shelley
I bet you are wondering how I managed to TEACH 20 kids how to read this year!
Re: EMG ...
my boyfriend customized my links to have this as one of them. i just click on the link. it is certainly a lot easier.
Re: Shelley
Okay I've never heard of Parsitan. is it for BEB? I am certainly not happy about the weight i"ve put on!
Re Parsitan-Mindy or Shelley
Hi Kathy,
You can't get it here in the USA. It comes from Canada. It has helped people with their spasms. It used to be sold here in this country under the name of Parsidol but is no longer available. I don't know the reason why. Maybe Mindy or Shelley can tell us more about it and the classification of drug that it is and what it does.
To get it here in the USA, you would have to get a doctor to prescribe it and send the prescription to Canada and then it could be sent to you.Shirley in AR.
Re: Re Parsitan-Mindy or Shelley
yes, mindy and/or Shelley. please tell us more about it! i wonder why you can't get it here anymore.
Re: Re Parsitan-Mindy or Shelley
Kathy,
At the following website you can read about Parsitan.
WebMD - ANTIDYSKINETICS (Systemic)
http://my.webmd.com/content/asset/uspdi.202057#GXX03
This will take you to the WebMD website.
Scroll down the list when you see Parsitan click on the little 3
next to it and you can read the medical description.
When it was sold in the US it was called Parsidol. It's no longer sold here because it wasn't making enough money for the drug company.
My Dr's office faxes a prescription to a Canadian pharmacy and the pharmacy sends the Parsitan to me via Fed Ex. in a couple of days.
It is not covered by insurance, because it is not sold here. For me a months supply is about $40. approx. They send a 2 mos. supply at a time.
It has anti-cholinergic properties. It's supposed to work like Artane, without the bad side effects of Artane.
When I was on a higher dose I got dry mouth, as time went on I did start having memory problems. I would cut back half a tablet and my memory improved and my spasms remained under control.
Mindy in NY
Related link: http://my.webmd.com/content/asset/uspdi.202057#GXX03
Re: Re Parsitan-Mindy or Shelley
My doctor said the same thing about Parsitan (Parsidol). It wasn't making enough $$$ for those poor, struggling drug companies.I was on Artane, too, and had awful problems with my mouth. I still have dry mouth on the Parsitan but not nearly as bad as with Artane. And as for memory loss...... doesn't that just come with OLD AGE!!!!
Re: Re Parsitan-Mindy or Shelley
does it work for beb? are your eyes open? i sure do miss seeing..... anything.....
Re: Re Parsitan-Mindy or Shelley
Hi Becca,
Parsitan is working to keep my eyes open.
It doesn't come with any guarantees.
Many here are helped with over the counter Benadryl,
for me it was a disaster.
I am very happy with my results, I just don't want to
give anyone any misconceptions.
Mindy in NY
Re: New person
Hi Shelley- welcome from another Californian!! So glad to hear you
are trying different options--this disorder can be complicated and what
works for one may not work for the other as has been mentioned by some
of our folks here on the board. Please tell me the name and location of
the Movement Disorder Institute here in Calif. Didn't know there was
one here. May be worth a trip there for me. Also give me your doctor's
name if you would. Is he an opthamologist, neurologist or what?
Again, glad to have you, we are hear to listen and hope to hear your
response. Thanks. Joanne M. San Diego, CA.
Re: New person
Hi, Joanne! I just posted all that information in a reply to Margo. If you can't find it, let me know and I will re-post. I am on my way to BED! 4 1/2 more days of school! YAH!
Re: New person
Hi Shelley, welcome and sorry to hear you too have beb. You sound like you are doing pretty good. I'm happy for you. I worked at an elementary school as the enrollment clerk. I haven't worked since feb. And I'm also glad to hear that you are from California. Me too! I live in Colton, what city do you live in? And where is the Movement Disorder Inst. I didn't know there was one here.
from Becca God Bless
Re: reply to colleen on pain
I get alot of headaches in my temples and my neck hurts alot from the squinting and jaw clenching. I am allergic to all anti-inflammatory meds so tylenol is the only over the counter med I can take-which is useless at a time like this. I take a prescription called Ultram. I only use it maybe 1 week every couple of months (and alot of times only 1/2 a tablet) but it does take the edge off without making me drowsy. Sometimes I feel a little spacey like I have had a glass of wine but it has gotten me thru some tough days. It is nonnarcotic I believe as well.
Re: For Pain
Hi Colleen,
Sorry to hear that you are having so much trouble. I see that several people have responded to you. Have you called your doctor's office and asked them if they could recommend anything for pain. I was just up there yesterday and saw Dr.Perlmutter.
I was going to suggest the Klonopin as a relaxant for your neck but I believe that Judy has already suggested that. The new drugs, Celebrex and Vioxx are both for pain and might be an option. Kathy is taking the Celebrex and having good luck with it. These are all prescriptions. Over the counter, like your using, I'd go with Aleve or Ibuprofen or Tylenol.Do you think that the Myobloc lasted as long as the botox? Maybe they could work you in a little sooner.
Let us know how you do. Shirley in AR.
--modified by Shirley-Arkansas-USA at Thu, May 24, 2001, 21:35:41
Re: For Pain
Thanks everyone for the information. It really helps to talk to someone about it.The last Myobloc lasted 3 weeks the same as my last Botex. Its not worth the pain if it doesnot last longer.
Some good news. Sunday is my wedding aniversity.We have survived for 51 years.I have a lot to be thankful for.
Shirely glad you are doing better.
God Bless all.
Colleen in IL We had a fire in the fireplace today.
Re: For Pain
Hi Colleen ... Happy 51st anniversary a bit in advance. That's a lot of hangin' in there! For us, it's been 47 years. We can say we are setting good examples at something for the younger ones.I'm sorry you're having so much pain. I am fortunate in not having a lot, except in the temple area of my left side and that seems to be from the constant squinting and straining, trying to make my left eye open and cooperate with the right eye. Enjoy your fire. It's been 90 degrees here ... MUCH TOO HOT ... more than 20 degrees hotter than normal for these dates. I am wilted, just put vinegar and bacon on me and called me salad! Salad Sally in North Idaho
Re: Therapist- Coleen
Hi Coleen,
I've been going to my psychiatrist for the last 7yrs.
My movement disorder specialist approves which meds.
I can take, and my psych. monitors me and my meds.
He is a board certified psychiatry and neurology.
Eight years ago when I was diagnosed, I didn't know anyone with this disorder. It really helped me to know this is a neurological disorder and I did nothing to cause it, and it wasn't all in my head. I needed that reassurance over and over.
Regarding botox, it takes a lot of patience on your's and your doctors part. Different doses and injection sites makes a big difference.
There are many meds. out there to try which also requires patience finding which ones or combination and what dose can help.
Many of these meds. are the same ones used for Parkinsons and
anxiety or depression.
Presently I am no longer on botox and have been able to cut back on my meds. to minimal dose and thank God, my symptoms remain very good.
I believe stress management is extremely important.
Best wishes,
Mindy in NY
Re: Therapist- Coleen
Wish me luck, Mindy and all. I have my first appointment with a therapist tomorrow so perhaps I can work through some of this (STRESS) through the summer. It feels as if I am stuck, as they say, between a rock and a hard place! My job is a great source of pleasure for me, yet also generates a lot of stress. My husband has really picked up the slack this year so I could continue to work; however, he now has WAAAYY too much control and I am beginning to resent him. Will keep you posted.
Shelley in California
Re: Mindy
You no longer have to have Botox?!! Did the parsitan do that? or what else are you doing that relieves the spasms? please reply.
Re: Mindy
The Botox stopped working for me, it took a year of trying to find out it actually was making me worse. At that point (last year) I had already tried just about every med for BEB. My doctor suggested Parsitan. I still take my anti-anxiety and anti-depressant meds. but I have been able to cut back to minimum dose. And I am down to 25mg.Parsitan a day.
For relieving spasms stress management has to be a way of life.
You have to learn to listen to your body. Learn what drains you
and then learn to take a different approach in dealing with it.
We cannot eliminate stress, we can only change the way we deal with it.
Don't get to the point of feeling exhausted, learn to stop before you get there. Take a short nap in the afternoon. Always "stay in the moment" don't dwell on yesterday and don't worry about tomorrow. Stay away from negative thoughts.
Find something you like to do and your eyes stay open while doing it.
Then spend hours doing it, this will give your eyes a rest from spasms, and will give your mind some peace.
Pray and have faith, know that God is in control, I am completely dependant on Him.
Best Wishes,
Mindy in NY
Re: STRESS REMINDER
Thanks for the reminder of what works for stress, Mindy. I certainly needed to hear it again (and again, and again--I'll print it out!).June in Toronto
--modified by June in Toronto at Wed, May 30, 2001, 10:28:45
Re: Mindy
i am just in amazement that you no longer have to have Botox!! i mean you could just as easily thought you had to have surgery at the point the Botox stopped working. my congratulaions to your doctor for figuring out what to do next and i really hope you continue to do well!
Re: Mindy
Mindy, I also think that it is great that you seem to be in control of this situation and are doing reasonably well on your meds and stress management techniques. I know that you have been through very hard times with this and think that you have really worked hard to get where you are. It is good to hear when people have gotten better. It gives us all hope. I am happy for you. Surely Shirley
Re: Mindy
Thank you Shirley,
Over the last 2 l/2 yrs. I've seen people come and go
from here. I would like to believe it's because they've
found something that is helping and they're out there functioning
very well. My heart's desire is to give hope to each and everyone.
Hugs,
Mindy
Re: Mindy
Mindy i told my doctor that you no longer had to have Botox and he was amazed and said that was earthshaking news and he would be interested in knowing more about this. How many years had you been getting the injections before this great news?
Re: Mindy
Hi Kathy,
Actually I'm suprised your doctor had that reaction.
When I saw your post earlier, I put in a call to my doctor to see if she felt the same way. She was not able to get back to me today.
I will keep trying.
I started Botox in l993. I have been looking through my papers,
and I see that I didn't need Botox for 2yrs. from l996-l998.
At that time I was on Pamelor and Ativan.
I didn't remember I was botox free for 2 yrs. I thought it was
one year.
Every 3 months from l998 - l999 I was getting Botox. It
was not working, I would feel better as the Botox was wearing off.
April of 2000 I started on Parsitan. It is a little over a year now without Botox.
Looking through my old papers left me with mixed emotions.
I have to keep thinking positive and thank God for bringing me
this far. I really did come a long way, but reading my notes
brought back lots of bad things I had forgotten. I see in my notes
I had Botox in my neck, which made my neck worse, and for the life
of me I can't remember ever getting botox for my neck.
I guess sometimes memory loss can be a good thing.
Mindy in NY
Re: Mindy
i'm sorry you had such a bad time. why are you surprised that he seemed interested that someone didn't need it anymore? this could be good news for some others also. Is Shelly having as good luck with it as you are? i mean there have been cases of BEB going away, haven't there?
--modified by kathy at Fri, Jun 08, 2001, 16:10:17
Re: Mindy
Kathy; Please tell me about cases of BEB going away. Thanks, Cliff
Re: Mindy
there haven't been many or they are rare. i think there is at least one women who was posting a year ago or so if others can remember.
Remission ...
Cliff:There have been a few people that are in remission, though that is not the norm. 'Patient Stories, Volume II', available from the BEBRF and edited by our own Susan Hasselle, relates some of them. A few of us that have been around here for awhile contributed to it. http://www.blepharospasm.org/blepharp.html#A1 Judy
Re: Mindy
That's OK Kathy. I went to work this morning, took my mind off myself and am back on track.
I guess I was suprised because my doctor never said anything like "earthshattering" to me.
I did get a call back today from my doctor's fellow.
She said what I just read in the Patients' Stories Volume 2
"A study soon to be published in the American Journal of Opthomology suggests that "some patients with BEB (about 10%) go into permanent or longstanding remission."
Neil R. Miller, M.D.
Johns Hopkins Wilmer Eye Institute
Baltimore, MarylandIs your doctor a neuro-opthomologist or a movement
disorder specialist? From what I've read of Shelley's posts, she is doing
very well.
Both Shelley and I are on other meds. besides the Parsitan and Shelley is also getting Botox. I don't remember if she mentioned how long
she can go in between Botox. She hasn't been on Parsitan
that long. I've been on it for a little over a year.
If you or your doctor would like to know anything
specific, I'd be more than happy to help out.
Mindy in NY
Re: Mindy
Hello, Mindy and all. I was diagnosed last July 13th (I remember the exact date because 2 days later, I turned 50 and had a HUGH party!) I remember walking out of the neurologists with Artane in my pocket, feeling great that I knew what I had and I had pills to cure it. Well, as we all know, that is not the case. Within 3 weeks, I was at a movement specialist, the one in Oxnard. I told him I have to go back to school in 2 weeks so do something. I had botox that day, Botox A, sixteen shots, I don't know how many units. Also stayed on Artane and started Valium. I'm not sure how I made it through the first few months of school, but I did. I had to get off of Valium during the day because I was driving myself. Sometimes I had to hold one eye open with one hand and drive with the other. I developed terrible dry mouth and sores in my mouth. I had to drink water all day while I taught. I also "scotch-taped" my eyes open at school! I let my bangs get a little longer and pulled them down and no one even noticed! The kids and their parents were wonderful, very supportive. They helped so much. You would just be surprised what a 6 year old can to when you give them a chance. Anyway, I went to Botox B and it works better for me because the Botox A spread and weakened other muscles around my eyes. I switched to Parsitan when Mindy told me about it. I seem to be having better results. I also started seeing a therapist who is helping me deal with stress which is my main trigger. I have to confront some issues in my personal life that I have glossed over in the past but can no longer cover up. I feel better just talking to her. I walk into her office and feel stronger. I see an acupuncturist, take some supplements. I will do anything to control this. I hope this isn't too disjointed. I lost my place a couple of time... so just bear with me. Thanks for all your support. If I can do anything for anyone, just let me know!
Affectionately, Shelley
Re: Mindy
no! my doctor said it was earthshaking; not yours. i am sure that faced with the choice of surgery or trying Parsitran that i would surely opt for that, that's all. Are you indeed on remission?
he is an opth surgeon, assitant professor of opthalmology, and does some research as well. he just said to keep up on it with you as it is an exciting development for anyone to no longer require the injections.
For now i am fine and am supposed to remain status quo, except for the fact that i am fat.
Re: Mindy
Kathy,
I don't think I was coming across clearly in my previous post.
I'll try again.
Neither me or my doctor think I'm in remission.
To me remission would mean I would be symptom free without
my meds.
A few years ago I was able to go without Botox for 2 yrs, but I was on medication.
So far it has been a little over 1 year without botox.
I am on minimal dose of my meds. which I am very happy about.
I am also very happy I am able to anything as long as I don't over do.
I am not 100% symptom free, but close enough for me.
As far as choice between Parsitan and surgery, my doctor is not in favor of surgery. She is a movement disorder specialist.
She is a genetisit researcher. She will be speaking at the conference in Arizona. She does not go over 50 units of botox, and will not give injections before 3 months inbetween injections. It's possible she makes exceptions, but I doubt it.
I am very happy to hear you are also doing well.
I pray the same for everyone.
Mindy in NY
Re: Arizona Conference
Mindy - when is this conference in Arizona? That is pretty close for me. Are you going?Shelley
Re: Arizona Conference
Hi Shelly,
Go to the below link and it will tell you about the conference. It is August 17-19 in Scottsdale. It should be in your newsletter too if you are receiving one.Shirley in AR.
http://www.blepharospasm.org/blepharm.html#WSF
Re: Arizona Conference
Hi Shelley,
I'm sorry I did not reply sooner, I didn't realize
there were "more" replies to my post.
It's good we have Shirley here to wake me up - LOL
I wasn't planning on going to the conference.
Best Wishes,
Mindy
Re: Mindy
Mindy, You give us all a little hope. There is not a whole lot of that dished out. We hear of everyone's problems and when they get worse or their meds are not working or the botox is not working-so it is nice to hear when a person is managing reasonably well. It doesn't have to be perfect-I gave up on perfection a long time ago.I can't wait to meet your doctor at the conference (even though I don't agree with that 50 unit botox limit) :-) This in no way is meant to discourage anyone from telling us what a miserable day you might be having. I've had three really bad ones. Today is better, though. Shirley in AR.
Re: Mindy
Thanks Shirley, Hope and faith is what kept me going.
Like I said, I'm not positive she won't give more
than 50 units.
I really do hope you get to talk with her. You should read up on her.
She was with Dr.Stanley Fahn for many years. Believe me when I tell you,
this is her life. That is how dedicated and determined she is to finding a cause and a cure.
She is a sweetheart.
Hugs,
Mindy
Re: Mindy
Mindy,
You say you use Parsitan and other meds. Do you mind giving us info on the other meds you take? Also are your spasm real bad or have they decreased since you started taking this combination of meds?
I get my injectiosn every 4 months. Getting on vitamins really helped me
and I also take 1 mg of klonopin a day. Maybe I should take more but I am trying hard to eleminate any medications I finaly got off antidepressant medication I had been taking for 6 yrs. I'm doing just fine w/o it.
Thanks
Re: Mindy
Hi Priscilla,
I apologise to you also for not replying sooner.
I don't mind answering anything about BEB.
I take 100mgs. Wellbutrin, 10mgs.Celexa, and
1/2mg. Lorazapam.
Over the last 8 BEB years I have tried many different
vitamins and suppliments. I think if you find anything
that helps, stick with it for as long as it's working.
That's what I do. My anti-depressants, their doses, and combination of meds. were changed many times over the years.
The anti-depressants and anti-anxiety meds. are prescribed for
the different movement disorders.
My spasms have decreased to practically zero.
Sometimes my eyes will blink for a short time when I'm talking.
Sometimes they will close when I'm talking or singing, or in the sun.
I can drive with no problem, I do have a problem driving and talking at the same time.
I'm glad you are doing well without the anti-depressants.
That gives me hope. Right now I'm doing well, so I am afraid to change anything. My eyes do much better when I'm happy and calm. I am also afraid of going back to unhappy and nervous.
Which vitamins are you taking?
Mindy in NY
Re: Mindy
Mindy You said you were on other meds beside Parsitan. what other meds are yon? Do you eyes still shut or have the symptoms improved?
I started feeling better after taking vitamins and also take 1mg of klonopin. Just want toknow how much your eyes have improved.
Re: Mindy
Dear Mindy:I would be interested to know how long you received Botox before your condition went into remission and you do not need Botox anymore. I have had injections for a year and a half and am optmistic I too will get this condition under control. My eyes do not close and stay closed - they never did - but I have had a problem with squinting and blinking which is very uncomfortable at times. I am very light sensitive so I do wear dark glasses when I go out. I am delighted to hear that you were fortunate to have this condition go into remission so I feel good now that I will be that fortunate also some day. I am working real hard at it and know it will happen. Please reply - my e=mail address is: esoulia@enter.net. I would love to hear from you.
Regards,
Pat Soulia
Re: Mindy
Hi Pat,
Welcome to the BB. Sorry to say I am not in remission.
My BEB is very well under control with medication.
If you read the previous replies from me in this thread,
you can read about my medications, et al. Also I believe it was in this thread we mentioned the patient stories volume 2 book that you can
get through the BEBRF. It's really worth getting and reading. There are patients stories in there of others that are in remission.
For me this all started 8 yrs. ago.
I am very happy to read you are thinking so positive, our outlook plays a major role in our condition, as well as working hard to keeping your symptoms managed.
God Bless,
Mindy
Re: Mindy
Dear Mindy:I would be interested to know how long you received Botox before your condition went into remission and you do not need Botox anymore. I have had injections for a year and a half and am optmistic I too will get this condition under control. My eyes do not close and stay closed - they never did - but I have had a problem with squinting and blinking which is very uncomfortable at times. I am very light sensitive so I do wear dark glasses when I go out. I am delighted to hear that you were fortunate to have this condition go into remission so I feel good now that I will be that fortunate also some day. I am working real hard at it and know it will happen. Please reply - my e=mail address is: esoulia@enter.net. I would love to hear from you.
Regards,
Pat Soulia
Re: Mindy
There was one other time I was able to go without Botox for over a year.
Then when I needed it again, it wasn't working well at all.
Every 3 months I would keep going back and trying again.
I was keeping daily records of my symptoms which helped me
recall, and helped my doctor see as the Botox wore off my eyes
would get better. (I should have kept my records in a book instead
of on the computer, backed up on a floppy, because all is lost.)
My Movement Specialist always talked me out of surgery.
I am a reformed stressed-out, burnt-out perfectionist.
Thank you for your well wishes, I pray the same for everyone.
Mindy in NY
Re: Any new people have questions?
I have just had surgery for my spasms. I think my condition is really hemifacial spasm. I have also seen it called blepharospasm as well. My surgery was called micro(something)intercranial nerve decompression. It was an instant success. I have had headaches and soreness at the incision site but so far everything is great. NO TWITCHING!! Does anyone out there have my condition? I took the botox shots for about 10 years. They did stop the spasms for about 2-3 good months and then there would be the time spent waiting to get them again and also the weeks afterward when the eye would be paralyzed. I always hated that time more than anything. Finally I got my courage up to have the operation, but down deep I was in doubt about having brain surgery for a non life threatening condition. I thought maybe God didn't want me to do it. But I guess I was just selfish enough to want it anyway. I am glad I did it now, but I still feel the need to talk to somebody with my problem about it. I do have questions and I guess I just want reassurance from other people who have had my experience. So if there is anyone interested in hemifacial spasm, I would sure appreciate hearing from you.
Re: Hemifacial Spasm
Hi Patty and welcome to our bulletin board. It does sound like you had hemifacial spasm and not Blepharospasm. Hemifacial spasm effects one side of the face and eye and Blepharospasm effects both eyes, sometimes one more than the other. You can go to the top of this page and click on BEBRF Main Pages and it will take you to some information on Hemifacial Spasm. The surgery that you had done is called Microvascular Decompression Surgery. The surgery was discussed at our last Blepharospasm conference last August in Kentucky. They tape all the talks and you could get a tape of that particular topic and the surgery for, I believe, about $4 . A Dr. Amin Kassam gave the talk and he was excellent. One thing that he did mention was that the patients that chose to use botox for their hemifacial spasm and then elected to have the surgery at a later date did have somewhat of an increase in postoperative Bell's palsy (delayed facial weakness). They had noticed that there seemed to be a difference in outcomes after the surgery. There studies had shown that the non-botox group as a whole did better than those that had received botox.
There is a specific Hemifacial site to go to and I will try to post the link for it.
I'm glad that you had the surgery done. I know that it must have been very scary for you. If you are interested in getting the audio tape, there may even be a video tape just check under the BEBRF Main Pages and you will find the 2000 conference tapes and where to order them from. Welcome to our bulletin board and ask whatever you like. Glad that you popped in.
http://hemifacialspasm.org/cof/index.shtmlShirley in AR. May I ask when you had your surgery and where it was done or by whom? --modified by Shirley-Arkansas-USA at Tue, May 22, 2001, 12:59:40
Re: Any new people have questions?
well, i'm an old person with a question. The additional injection in my bad eye worked almost too well the first time, but as you all know by all the confounded complaining i've been doing this time, it didn't.
what next time? put the additional injection in a different place?? Before your suggestion my doctor and I were alternating eyes as to which would be the first one. please reply. i just had to have a defective cable modem replaced and have been out of touch.
Re:Where to place injections
Hi Kathy, I've been away to St.Louis for the past two days getting botox. Sorry about your defective cable modem. We've had our share of problems with DSL (phone line high speed modem) so we finally went to cable modem. It does not seem to be as fast as the DSL was. The cable modem seems to take spells of not working as well. We were told it depends on how many people are using it.My only suggestion is to have your doctor watch you for awhile and see where your spasms are originating and go from there. The docs really have to look at you to see where you need the injections. Everyone is different and will need varying amounts in different places. What works for one might not work for another. Wish that I could help you more but it really has to be an individualized treatment plan. If one eye is worse, it just makes sense to get a little higher dosage in that area. Shirley in AR. Whose eyes are still tearing.
Re: Re:Where to place injections
okay, i'll discuss it with him.
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