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Postby kEG on October 13th, 2002, 3:25 pm

I just wanted to see how every one was doing, and wanted to let you all know how well I am doing. It's been about a week since my last post. I made up my mind not to let the twitching get me down or stop me from living. I have taken my doctors words seriously, that the twitching is probably stress related. Once I accepted that, and continued with my zoloft and xanax, the twitching has almost stopped. Now when I feel them, I just think to myself "oh, there goes another one, no biggie" and I continue with whatever I'm doing. I don't give it a second thought. I am now more certain than ever that the more we dwell on them the worse they are. The more we worry, the worse they are. YOU HAVE TO BELIEVE that you are OK, and it WILL get better!!! Set your mind on the fact that you are taking control and will not let them get the best of you! It's the best advise I can give. I bet I only have about 20 twitches a day now. Where I used to get at least 20 a minute. Try to let go, stay away from this site and keep busy, and don't give your twitching any power! See what happens, So far it has worked for me! It is possible that each of us has a different reason for twitching, but I tend to think a lot of it stems from our anxiety and OCD. I truely believe we can all get better!

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Postby Arron on October 13th, 2002, 7:45 pm

Keg, glad to hear you are doing better and more power to ya! I too believe that if you just ignore them, they will subside for the most part. Good post and thanks for letting us know how everything is working-out for you. Every bit of new information and success stories helps everyone have something better to look forward to. You take care! :o
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Postby SusanSid on October 14th, 2002, 9:58 pm

Keg,
Glad you are doing better. Maybe the meds are helping you calm down. I bought the Lucinda Bassett tapes on stress/depression and anxiety (they were well worth the money) and that's one of the things they say is that sometimes we need meds to get us out from the hell pit we're in before we can start to move forward. If meds helps that happen, so be it!
I agree with the worry part. I can start obsessing about my symptoms and be a mess before I know it. Our mind is very powerful. And...yes I can then feel a lot more twitches.
I had an appt. with a new internest today. We moved back to CA from another state (so happy to be back), and I needed a new doc. You know how we all stress out about the docs we see...will they think we're nuts or will they tell us we have a month to live!? Yikes. Anyway, what a pleasant appt. it was. I told her my story about the twitching, worry about ALS, about my anxiety etc. She took my hands in hers, looked at them carefully, checked my feet (am going back for a physical, this was an "intro" appt) and said very firmly...."you do NOT have ALS, no way. I've seen it before and I can tell by just looking at you that you don't have it." She rattled off some facts about my muscles look great, blah blah blah. Id wasn't paying that much attention because I was so stressed out at just going over my fears about ALS that I didn't catch all that she said.
I've been twitching for 10 months now and still am going strong! Again, she has yet to do a detailed exam (coming up), but it did make me relax. She has had patients ( she's in her mid to late 50's) with it and said that ALS is very obvious, she's not worried about me and to start living.
Yes, she's no neuro (they have a requirement to have no personality, did you know that! ha) but she's an experienced doctor and said what I needed to hear AGAIN. Just thougth I'd share my experience. Oh, she wanted me to think about starting buspar (antidepressant without the "kill your sex drive" side effect as in SSRI's) or klonopin. She told me to research it (I told her how much I research things, especially being a nurse) and let her know what I wanted to do. I like her attitude.
Enough said, hope all of you are doing well.
Sue :wink:
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Postby Arron on October 15th, 2002, 9:59 am

Susan, I have those cassette tapes from Lucinda too. Man what a life saver when you are off the deep-end! My mother bought them for me about 6 years ago and they are the next best thing to meds and can provide things that meds can't... mental support. Just wanted you to know that someone else has used those tapes with great success and I still keep them in my closet, just in case...
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Postby SusanSid on October 15th, 2002, 9:52 pm

Aaron,
Alright, I love those tapes. I too put them away for awhile and when I'm in need for a bit of mental support I pull them out. One of the things I like about her tapes is that they talk about stress/anxiety and depression in a way everyone can relate. They say it the way it is and I love that. Great stuff :D
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Postby kEG on October 22nd, 2002, 9:48 am

Hi again!

Just checking in. I also bought 2 books that are TERRIFIC "Hope and Help for your nerves" and "peace from nervous suffering" By Claire Weekes. They have been like my Bible! Only $6.99 each and more than worth it!

Still doing great, only a few twitches per day, and I barely think of it! Zoloft does kill the sex drive, but once prodded, I do OK! :wink: This side effect is worth not having the fear and twitching!

Hope you're all doing great!

KEG
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Postby DaveKD on October 22nd, 2002, 12:07 pm

I agree about the neuro's with no personality. I think they need to detach themselves, my doctor said most nueromuscular specialists see patients everyday who are dying or have a very disabling disease. To see a patient with BFS should be a treat. To bad they don't look at it that way.
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Postby Jake_the_twitch on October 22nd, 2002, 1:31 pm

Just to let you know, after 14 months of twitching I am almost over this thing. My twitches are also down to a point where I have to think did I twitch today. It use to be 24/7. I attribute my improvement to three things, time, acceptance and lastly meds. I have been taking Celexa for the last month. Early on I had tried Paxil but I believe I was so hyped up that nothing could have helped. After a year my anxiety was declining but I felt I needed some help to ensure it didn't creep back in. So I think the Celexa is helping as it is supplementing my improvement. I am also able to stop taking Clonazepam and I can sleep like a baby again. Still have aches & pains but what the hell.

As for Neuro's, there is perhaps no worse specialty than that. All your patients are facing a progressively worse outcome and in all honesty they can't do a thing for them.
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Postby javens on October 25th, 2002, 9:01 pm

Hi Jake,
Congrats on almost shaking this BFS thing!
Did you also have muscle aches fatigue etc... ?
If so ...have those resided as well?
Thanks!
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Postby kEG on October 27th, 2002, 11:54 am

It's nice to know there is a light at the end of the sometimes very dark tunnel!

Glad to hear I'm not the only one doing better! I hope all of you can be "twitch free" soon!


xoxoxox

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Postby Nole on October 27th, 2002, 6:49 pm

So glad to hear that others are getting better as well. I have very minor twitches now, and I dont even know somedays if I even have them. I sleep great, take a multivitamin, keep myself active, and keep POSITIVE thoughts in my head. There was a point when I thought how can I function in life if I twitch like this. Now I know anything is possible if you put your mind to it. I am not on any meds (never was), keep my stress level down, find time to relax, have massage therapy, and I am feeling great. Just stay positive, there is a beautiful light at the end of the tunnel.
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