Needing encouragement


Posted by joanna , Sep 30,2001,13:57   Archive
Hello everyone,

You may remember, I'm the relative newcomer in the midst of finding the right treatments. I stopped working last week, hoping that my neck injections would get me back to work tommorrow. I got them wednesday, and so far see no improvement in my spasms, just difficulty talking a swallowing. I'm panicking. I need to work. I support myself.Can't drive at this point, read, watch t.v. I have a bad case of meige and my neck is really out of control.

Please tell me that there are people who live alone and are able to work with this. I need to here that there are people who can drive. I need to hear about neck injections and how long it takes for them to work. I've been crying all weekend, because i don't know what else to do. I've done all the botox and meds that have been recommended and still am disabled. Seen all the best doctors at Hopkins. feeling sorry for myself today and in a panic, which i'm sure isn't helping the spasms.

Just reaching out...venting

thanks
JoAnna in Baltimore Anybody out there in Baltimore??




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Re: Needing encouragement

Re : Needing encouragement --- joanna
Posted by Joann Humphrey , Sep 30,2001,14:09 Top of Thread Archive
So sorry to hear the botox hasn't helped yet. It may take a few more days. I don't have the neck problem. If botox doesn't help, possibly the myobloc B will do the job. I wish you luck & hope things get better for you quickly. Have you tried the cold packs around the neck, while keeping your feet in hot water? As I recall, someone recommended that.
Joann in Ark, where it's a beautifu fall day.



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Re: Needing encouragement

Re : Needing encouragement --- joanna
Posted by cYNTHIA (Cynthia,cYNTHIA), Sep 30,2001,14:29 Top of Thread Archive
Joanna, I'm sorry you are experiencing such sorrow and panic. It's not a new story on this board or, I dare say, at any of the wide-spread support group meetings. If you would like to email me with your phone number I'd be glad to call you to listen and help in any way I could. In the meantime I am praying that you will get many answers to what you need to hear from those who have suffered similarly and also that the Botox will be effective SOON.
Cynthia in IL




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Re: Needing encouragement

Re : Needing encouragement --- joanna
Posted by June in Toronto (June Floyd,June in Toronto), Sep 30,2001,15:36 Top of Thread Archive
Dear JoAnna, this seems to be a very bad weekend for you. I hope its "the bad before the good" and things will begin to improve for you very soon. My botox injections don't help me for 4 weeks or so - we all differ so much in our response to them, so you have to give them more time. I'm glad you "reached out and vented" to us - we can take it and understand. I will pray that you get some relief soon. God Bless

June in Toronto




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Re: Needing encouragement

Re : Needing encouragement --- joanna
Posted by Sally - in - Idaho , Sep 30,2001,22:43 Top of Thread Archive
Dear Joanna,

Don't give up; I'm so sorry this has been a bad week-end for you. Sometimes we just need to give in and cry before it gets better, so I'll hope that tomorrow is a more upbeat day.

I do not have the neck problems so can't help there. I'm hoping that Judy will respond, as I believe she does have Botox for that area. It takes awhile of trial and error to get the best results from Botox, and even then the results are not always the same.

I've forgotten how old you are? Is there a chance you could get on disability? There are several on this BB who can give you excellent advice for applying. Is your job something that you can handle fairly well once you get to it? Are there ather ways (besides driving yourself) to get there? Do you have any family close by to give you help and moral support?

My e-mail address is on this message if you'd like to "talk" via e-mail. I do answer people quickly. Also, if you'd like, I will give you my phone number. I am in the Pacific time zone. I'm sure that you are much younger than I, but you could pretend I'm your grandma! I'll listen and not judge.

I thought we had someone on here from Baltimore. Anyone out there??

Just keep in mind that there are lots of here on this BB who will bolster your spirits and help any way we can from a distance.

Take care. Have a pleasant night and a cheerier tomorrow. Let us know how you are doing. WE CARE!

Sally in North Idaho where it's been a lovely fall day.

--modified by Sally - in - Idaho at Sun, Sep 30, 2001, 22:45:01




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Re: Needing encouragement

Re : Needing encouragement --- joanna
Posted by Alan Phair , Oct 01,2001,14:43 Top of Thread Archive
Joanna, sorry to hear about your problem with the Meige. I also have Meige but have been able to control it somewhat by Medication. I wish the same were true with my eyes but the neck and mouth seem to stay under control when I take my Klonopin on Schedule. Right now for example, my neck and chin are clamped shut but I forgot to take my noon dose and it is now 3:45. Typing this Email made me remember that I hadn't taken it so thanks for that anyway. I am one of those who cannot drive because of my eyes and I also have trouble reading.

Have you tried Medications? As I mentioned, I take Klonopin .5mg threee times a day and Neurontin 300Mg three times a day. You might also try a neck brace or collar for those times when you have to go out and it is really bad. Listen to me talk, my wife has been telling me to get one for the last few months and I guess I am too vain to do so. Tell you what, if you do, I will.

Anyway, hang in there and keep trying different Dr's if you have to. The Myobloc B might help as they say that is better for the neck than the eyes. I will keep you in my prayers and please keep us posted on your progress. Whatever you do, don't give up....Alan




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Re: Needing encouragement

Re : Re: Needing encouragement --- Alan Phair
Posted by Ann Doyle , Oct 04,2001,06:03 Top of Thread Archive
Alan, How often do you take klonopin and wht dosage? I just started and it has progressed down into my mouth and throat and total face. Ann Doyle



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Re: Needing encouragement

Re : Needing encouragement --- joanna
Posted by Christel-California , Oct 01,2001,15:36 Top of Thread Archive
Joanne, my thoughts are with you, though I can't tell you any of the things you want to hear. I don't work anymore, I'm not alone, I can't drive anymore and I don't have the neck problems. I also don't take Botox, since I didn't respond to it. I do know that Botox takes a while to kick in and since you only received your injections on Wednesday, it's probably too soon to expect positive results.
There are people on this board who are still working and they will hopefully speak up with some advice for you.
Perhaps you could go on temporary disability, until you have worked out your botox dosage and different medications to achieve optimum results.
I hope you have family and friends to emotionally support you through your difficult times.
We are always here and we are your friends too, so come back and vent anytime. Though I hope for you that you will be able to come back with good news.

Christel in Ca.




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Re: Needing encouragement

Re : Needing encouragement --- joanna
Posted by Joanne Matuzas , Oct 01,2001,16:57 Top of Thread Archive
Joanna, I am sorry for your situation that seems so out of control
for you. I don't diminish that one bit. As was mentioned by another
blephro, the injections may take two weeks to take effect so hang in
there. As you mention, the panic will intensify the spasms and whatever
is affecting you. Perhaps some deep breathing and relaxation techniques
will help you through the initial trauma of this. As far as the neck
injections, Martha Murphy is the head of the Dystonia group in San Diego. She has cervical torticollis (which is probably what you are
experiencing with your neck.) Her e-mail address is tmmurphy@juno.com and I am sure she might be able to shed some light on the neck problems
for you. It sounds like you've been affected hard and fast and that
must be very difficult. Do you have any vacation or sick leave time
where you can take off for a few weeks--you may have some relief from
the botox by then. This has been a laborious process for most of us.
The answers do not come fast and easy but with some patience, you'll
get help and/or relief. In the meantime, feel free to vent here.
Take care. Joanne M. San Diego, CA



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Re: Needing encouragement

Re : Needing encouragement --- joanna
Posted by kathy , Oct 01,2001,17:09 Top of Thread Archive
joanna, with what you are describing, you need to be on disability. to be totally alone and dealing with all of this is way too much! you need your body to rest and then maybe some of these medications will either take effect or whatever, but you need all this pressure off of you for awhile. sincerely.



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Re: Needing encouragement

Re : Needing encouragement --- joanna
Posted by Pat Soulia , Oct 01,2001,20:27 Top of Thread Archive
Hi Joanna:
Sorry to hear you are having some difficulty. I have Blepharospasm and Meige Syndrome and had injections for 1 year in PA where I live without results. I started going to John Hopkins this year and I see Dr. Neil Miller. Had injections in April which worked fairly well - again in June with very poor results and again in August.
Things seems to be better this time so don't give up. It requires patience and I can understand how you feel. I was unable to watch TV or read for months but things have been changing for the better so hang in there. I do drive but I only go to the grocery store and some local driving. Hopefully this too will change but for now I am limited re: driving. I honestly feel that the trip to John Hopkins (it takes 4 l/2 hours from my home) has been very helpful for me considering what I went through for a year where I live in PA. Do you see Dr. Miller at John Hopkins? If you want to e-mail me with any questions my address is esoulia@enter.net. You will find a lot of support on the bulletin board - the people are great and very helpful. If I can be of any help please e-mail me and I will respond. I have been dealing with this problem almost 4 years and I can appreciate what you are going through. I will keep you in my prayers.
Pat in Stroudsburg, PA



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Re: Needing encouragement

Re : Needing encouragement --- joanna
Posted by Dee Shaw , Oct 01,2001,20:40 Top of Thread Archive
Hang in there JoAnna. It took ten years for me to get correctly diagnosed. I also had Laser surgery for acute glaucoma. Sometimes the shots really to work, then othe times not. I also take Neurontin and Keppra. I have Meige too. I have Oral Mandibular Distonia. I chew gum a lot and sing. I retired on disability and crochet and read when I can. My husband would rather drive me than let me drive and take a chance. This after I wrecked two cars.
I will pray that things get better for you.
Dee in Eureka, California



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Re: Needing encouragement

Re : Needing encouragement --- joanna
Posted by coleen dennis , Oct 01,2001,21:16 Top of Thread Archive
Hi Joanna!

Sorry to hear that you are not doing as well as you would like. I just wanted to let you know that I have BEB and do continue to work. I am not able to drive but luckily have children that go to school or work in near where I work and my husband picks up when they can't.

I have only been diagnosed with this for about 6 months and have had two sets of Botox injections. So I am still in the stage of experimental treatment also. I do use a lot of bandaids with this. I wear the dark glasses, run my hand along the wall at work and when my eyes really don't want to stay open before the botox, I use a cane to let others know that I am not at my best. I am finding that co-workers are beginning to be more supportive as they find that this may not be a temporary situation for me as they first thought.

Do you have anyone that you can carpool with from your job?

I wish I could be of more help to you. I may be one of the closer ones to you as I am about 1 1/2 hrs away in Central PA. I will include my email address and sometimes my husband and I get down your way and I would love to get together with you. Is anyone out there closer than I am?

My thoughts and prayers are with you....take care....

Coleen in Central PA




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Re: Needing encouragement

Re : Needing encouragement --- joanna
Posted by Mindy , Oct 01,2001,22:07 Top of Thread Archive
Hi Joanna,
I had botox once for my neck. My improvement came when I found an excellent chiropractor. It was a long slow process, but my neck is fine
now. I had to give my neck a lot of rest, lying down. Sleep only on my back. I did 20 minutes, 2x's a day of meditation, visualization, and
other forms of stress management.
I have BEB along with Meige. I used to get botox for both, and was
helped with different medications.
I work 2 mornings a week, I am able to drive.
I took a leave of absence twice, gave up one job, and kept my other job.
Many things I was not able to do in the beginning, I am able to do now.
You will learn ways of coping. It just takes time and positive thinking.
Best Wishes,
Mindy in NY




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Re: Needing encouragement

Re : Needing encouragement --- joanna
Posted by Delaine Inman , Oct 01,2001,23:09 Top of Thread Archive
Keep reaching out and keep venting. I'm sorry you are having such a rough time. I know you want to work and I know you don't want to hear this, but some of us can't work. We haven't given up and we are surviving. Do you have any disability insurance? Family who can help you out at least temporarily until you could get Social Security Disability and SSI. You can always go back if things improve. We had to downsize and I thought I had to work, but things have worked out and I actually believe I have a better quality life because I'm not dealing with a job and trying to cope with BEB/Meige. I loved my job and did not want to give it up, but I have found blessings and meaning and purpose despite the fact life has not turned out the way I wanted it to or the way I had imagined it would. I wanted this terrible condition to go away or find something that worked so I could return to work, but it just hasn't happened. I know this must really be hard, but there may not be a quick fix. Keep trying different things and doctors and injection sites and maybe with time things will improve, but there is the possibility that the condition won't improve, but you will. This takes time to process and learn how to cope. You will be in my heart.



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Re: Needing encouragement

Re : Needing encouragement --- joanna
Posted by kerry horton (KERRY HORTON,kerry horton), Oct 02,2001,13:39 Top of Thread Archive
Hi Joanna:
I see you are a pyschotherapist. Have you ever thought about setting up a practice at home or sharing space with a nearby practioner? I have a friend who rented some space for his therapy practice from someone close to him and it has worked out really well.
Another thing that comes to mind is writing. It seems like things are so incredibly hard right now, but you might begin to feel better if you could write about what you are going through. Who knows, you may even be able to use it as a spring board for a book or a column in a local paper. One of my favorite writers, Richard Bach, wrote, "There's no such thing as a problem without a gift for you in it's hands..." I hope you can find whatever gift awaits.... and soon.
When the going gets tough the tough get creative!
You are in my prayers.
Kerry Horton in CT



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quote was great.

Re : Re: Needing encouragement --- kerry horton
Posted by Delaine Inman , Oct 02,2001,23:37 Top of Thread Archive
I love Richard Bach and that was a beautiful quote and oh so true. Thanks for sharing the quote and reminding us to look for the gift. No matter what the situation or circumstance in our life we can't control, we can always control how we respond to it. Looking for the positive isn't easy, but it is better than looking at the negative. We miss precious gifts and moments if we aren't open and ready to finding them. Finding joy and happiness is a choice....bad & sad things happen to us, but misery is an option and it is habit forming and contagious and we can't hang out there very long at a time. Again thanks I needed that.



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Re: quote was great.

Re : quote was great. --- Delaine Inman
Posted by kerry horton (KERRY HORTON,kerry horton), Oct 03,2001,12:19 Top of Thread Archive
Hi Delaine:
Glad the Bach refresher did some good. His work has had such a big impact on my own sense of spirituality and that has served me greatly during this past year of trying to help my Mom deal with BEB. Yoga has helped, too.
Kerry in CT where it is one of the top 10 weather days of the year!



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Re: quote was great.

Re : Re: quote was great. --- kerry horton
Posted by Delaine Inman , Oct 03,2001,23:09 Top of Thread Archive
I love listening to him on tape. I've read and listened to many of his books. He certainly has opened my heart to being a more Spiritual Being.
I often remember one thing he said about "security". When he quit his job at a major company where he made great money with good benefits to follow his heart and be a writer, his coworkers thought he was crazy. Years later he was a successful writer and the company had laid off all his former co-workers. The gates were locked and grass was growing up through the parking lot cracks. Sometimes our "security is an Illusion". I remembered that when I had to quit my job because of BEB and at other times in my life where I made choices of the heart that didn't make sense to others. His words reminded me that Real security is not provided by a company, but by Faith.



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Re: quote was great.

Re : Re: quote was great. --- Delaine Inman
Posted by kerry horton (KERRY HORTON,kerry horton), Oct 04,2001,12:52 Top of Thread Archive
Wow, Delaine!
You hit the nail on the head that time! I really needed to hear that! So fitting for me personally right now. Thanks for sharing your thoughtful insight!
Kerry in CT smiling from the inside out.



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Re: Needing encouragement

Re : Needing encouragement --- joanna
Posted by Dee in OR , Oct 02,2001,16:24 Top of Thread Archive
Hi JoAnna,

You've come to the right place if your looking for encouragement and support. The people here on the BB will love you through anything! Now I'm not trying to chase you away but have you tried posting on the Dystonia BB too?

I am a psychotherapist too and if you want to e-mail me privately, my e-mail address is at the top of this post.

The best advice I can give you is BREATHE!

Dee in OR




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