Bad days

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Re: Bad days

Postby edado69 on October 13th, 2012, 4:14 am

TwitchyDoc wrote:edado, we started at the same time. After 3 or 3,5 years, it got definitely worse. I also checked my MVC (the non-needle part of EMG) and found that I have F wave persistence lower than I had few years ago, which of course added a lot to my worry as F wave has to do with anterior horn cells and for me it got from 100% to 46% (50% is minimum but this is still acceptable). But carbamazepine helped me a lot. If you did not try, definitely go for it. Try 600mg per day, it must help!
Usually, combination of carbamazepine and benzodiazepines works, so its worth a try.

By the way, the dose is quite of a dose...Tried lower? No, I never tried rx. Any. No Nuero did suggest and perhaps I would have avoided anything to do with "suppression" of a response to something we do not know anything about.
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Re: Bad days

Postby jerry2 on October 13th, 2012, 4:24 am

edado69 wrote:Any of you has tried melatonin? Any feedback on it?


I tried it I have 2 yoga classes, one was for 5 days in silence. It is hard to meditate for me, I guess it is hard to calm down so much to listen to myself and to the silence, that is interrupted with twitches here and there. I still try though to meditate.
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Re: Bad days

Postby edado69 on October 13th, 2012, 7:27 am

jerry2 wrote:
edado69 wrote:Any of you has tried melatonin? Any feedback on it?


I tried it I have 2 yoga classes, one was for 5 days in silence. It is hard to meditate for me, I guess it is hard to calm down so much to listen to myself and to the silence, that is interrupted with twitches here and there. I still try though to meditate.

What did you think about melatonin? Tried meditation (reluctanty, I must admit). Nothing for me.
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Re: Bad days

Postby edado69 on October 14th, 2012, 5:05 am

My new records last night. No sleep since 1:30 AM. Florid twitching. Not sure how future will be for me.
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Re: Bad days

Postby jerry2 on October 14th, 2012, 5:10 am

jerry2 wrote:
edado69 wrote:Any of you has tried melatonin? Any feedback on it?


I tried it I have 2 yoga classes, one was for 5 days in silence. It is hard to meditate for me, I guess it is hard to calm down so much to listen to myself and to the silence, that is interrupted with twitches here and there. I still try though to meditate.


I am sorry for this post, it was posted in the wrong topic, on another one somebody asked me if I tried meditation.
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Re: Bad days

Postby edado69 on November 2nd, 2012, 3:39 am

edado69 wrote:My new records last night. No sleep since 1:30 AM. Florid twitching. Not sure how future will be for me.

For the records, my left calf is now a bag of worms...
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Awful facial twitches

Postby edado69 on November 2nd, 2012, 5:30 am

To topi it up, awful facial twitches that you can feel and see pretty well (does not look good) on the right, which also been my most frequent side of occasional facial twitches.
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The way I feel

Postby edado69 on November 2nd, 2012, 6:21 am

How could I describe the way I feel today?
Had a good rest last night...Feeling too bad nevetheless.
My fasciculations are getting worse. My left calf, which has been twitching more often than the right also in the past, is a non-stop..
Face, as I said above. Body...Pops everywhere. Long gone are the times when I thought that twitches were affecting one body part at the time...
Some aches, particularly to the left calf. But, this is nothing.
My mum, 72, is getting worse. A few falls over the last couple of years and 3 fractures. They think this is Parkinsonism. She is struggling speaking now and swollowing. Levodopa is not helping. At 68 she was quite fit. The right leg, particularly in the evening, does not wish to move/respond to commands. Younger brother, 40. Fasics for years. He is not bothered, but the right arm did get weaker (and lost bulk/so the right side of his chest). Still doing everything well. Physiotherapist blamed the shoulder.
My mind goes you know where...My thoughts produce physical pain. For my kids, first of all, and my wife. I try to keep all inside. Typing this is just let go out a bit of the pain. Sorry.
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Re: The way I feel

Postby raindog on November 2nd, 2012, 7:22 am

edado69 wrote:How could I describe the way I feel today?
Had a good rest last night...Feeling too bad nevetheless.
My fasciculations are getting worse. My left calf, which has been twitching more often than the right also in the past, is a non-stop..
Face, as I said above. Body...Pops everywhere. Long gone are the times when I thought that twitches were affecting one body part at the time...
Some aches, particularly to the left calf. But, this is nothing.
My mum, 72, is getting worse. A few falls over the last couple of years and 3 fractures. They think this is Parkinsonism. She is struggling speaking now and swollowing. Levodopa is not helping. At 68 she was quite fit. The right leg, particularly in the evening, does not wish to move/respond to commands. Younger brother, 40. Fasics for years. He is not bothered, but the right arm did get weaker (and lost bulk/so the right side of his chest). Still doing everything well. Physiotherapist blamed the shoulder.
My mind goes you know where...My thoughts produce physical pain. For my kids, first of all, and my wife. I try to keep all inside. Typing this is just let go out a bit of the pain. Sorry.


edado, i feel your pain, for me its been relentless too coupled with definite lower motor neurone abnormalities on emg and indicating chronic on going progression i sometimes wonder where it will lead, but it will be 7 years for me after the new year and my muscle strength and bulk is still good and strong.

My take on what might be happening with you is, Have you ever thought about quitting the body building? I sometimes wonder if a man is actually designed to do this, and if i'm being honest i dont thinks its normal or kind to the body and muscles. I often look to to how animals behave and more so Apes and monkeys or closest ancestors , yes they a physically strong animals but their strength is from using their muscles they way muscles are designed to do, you also never see them just repeating anything too strenuous for the sake of it over and over again. I think fitness is a good thing but can be dangerous if excessive. Anyway its just a thought that maybe its your bodys way of telling you enough is enough. IMO Its worth at least giving it a try and doing some yoga stretching type stuff or swimming and see if your flair up gets any better.

Best wishes.
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Re: Bad days

Postby volfan on November 2nd, 2012, 7:33 am

Raindog, I like your idea about how we (some more than others) might be stressing our bodies too much physically. I know I stress mine more mentally and emotionally, but there are many who push their bodies too hard in the physical sense, yes? Either way, the body can only take so much and there are limited ways (I assume) it can show you that you are pushing it beyond perhaps where it is "designed" or wants to go. I think the symptoms we have are some of those ways our body tells us "enough". As Secret Agent Man tells us (as many others like you and the other sages on the board), we need to make a change. The tough part is making a change when your body has revolted in such a way that it scares the bejesus out of you. But that is exactly when we need to do it....
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Re: Bad days

Postby raindog on November 2nd, 2012, 7:52 am

volfan wrote:Raindog, I like your idea about how we (some more than others) might be stressing our bodies too much physically. I know I stress mine more mentally and emotionally, but there are many who push their bodies too hard in the physical sense, yes? Either way, the body can only take so much and there are limited ways (I assume) it can show you that you are pushing it beyond perhaps where it is "designed" or wants to go. I think the symptoms we have are some of those ways our body tells us "enough". As Secret Agent Man tells us (as many others like you and the other sages on the board), we need to make a change. The tough part is making a change when your body has revolted in such a way that it scares the bejesus out of you. But that is exactly when we need to do it....


I agree entirely, yes i forgot to mention out mental health and emotions and these too have a massive impact on out body's overall health. 12 Months before my onset was the toughest 12 months of my life both mentally and physically as i had to tend and watch my father die of Lung cancer. Dont think ive ever got over it or maybe ever will. My wife says all the time that i havent been the same since. :(
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Re: Bad days

Postby edado69 on November 6th, 2012, 11:05 am

raindog wrote:
volfan wrote:Raindog, I like your idea about how we (some more than others) might be stressing our bodies too much physically. I know I stress mine more mentally and emotionally, but there are many who push their bodies too hard in the physical sense, yes? Either way, the body can only take so much and there are limited ways (I assume) it can show you that you are pushing it beyond perhaps where it is "designed" or wants to go. I think the symptoms we have are some of those ways our body tells us "enough". As Secret Agent Man tells us (as many others like you and the other sages on the board), we need to make a change. The tough part is making a change when your body has revolted in such a way that it scares the bejesus out of you. But that is exactly when we need to do it....


I agree entirely, yes i forgot to mention out mental health and emotions and these too have a massive impact on out body's overall health. 12 Months before my onset was the toughest 12 months of my life both mentally and physically as i had to tend and watch my father die of Lung cancer. Dont think ive ever got over it or maybe ever will. My wife says all the time that i havent been the same since. :(

You got me. Plus, thank you for your kind words
About your suggestion: I am scared. My mind tells me that you may well be right. But, I am so scared that other thoughts enter my mind.
You may argue also that I am fit nevertheless because I keep fit and I do an extra-effort when compared to the average "male" to keep fit. I can assure you that I do not overdo. There have been times when I did years ago. Always natural (yet, was it natural to do what I did?) and achieving results, I suspect, at the top end of my genetic potential (which I do not think was great as my top ranks were instead). I am 80 kg circa nowadays and I have remained so for the last 10 years. About the stressful events. I can copy the stressful phase over the 12-24 months prior the onset due to specific circumstances. Very, very stessful indeed.
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Re: Bad days

Postby edado69 on November 6th, 2012, 11:06 am

raindog wrote:
volfan wrote:Raindog, I like your idea about how we (some more than others) might be stressing our bodies too much physically. I know I stress mine more mentally and emotionally, but there are many who push their bodies too hard in the physical sense, yes? Either way, the body can only take so much and there are limited ways (I assume) it can show you that you are pushing it beyond perhaps where it is "designed" or wants to go. I think the symptoms we have are some of those ways our body tells us "enough". As Secret Agent Man tells us (as many others like you and the other sages on the board), we need to make a change. The tough part is making a change when your body has revolted in such a way that it scares the bejesus out of you. But that is exactly when we need to do it....


I agree entirely, yes i forgot to mention out mental health and emotions and these too have a massive impact on out body's overall health. 12 Months before my onset was the toughest 12 months of my life both mentally and physically as i had to tend and watch my father die of Lung cancer. Dont think ive ever got over it or maybe ever will. My wife says all the time that i havent been the same since. :(

You got me. Plus, thank you for your kind words
About your suggestion: I am scared. My mind tells me that you may well be right. But, I am so scared that other thoughts enter my mind.
You may argue also that I am fit nevertheless because I keep fit and I do an extra-effort when compared to the average "male" to keep fit. I can assure you that I do not overdo. There have been times when I did years ago. Always natural (yet, was it natural to do what I did?) and achieving results, I suspect, at the top end of my genetic potential (which I do not think was great as my top ranks were instead). I am 80 kg circa nowadays and I have remained so for the last 10 years. About the stressful events. I can copy the stressful phase over the 12-24 months prior the onset due to specific circumstances. Very, very stessful indeed.
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Re: Awful facial twitches

Postby edado69 on November 12th, 2012, 3:31 am

edado69 wrote:To topi it up, awful facial twitches that you can feel and see pretty well (does not look good) on the right, which also been my most frequent side of occasional facial twitches.

More of the same. Slept perhaps 1 hour and no that it could have been different with the zaps I was getting. It feels to me that this is it. Neck, face, arms, forearms, ands, abs, back, legs...
The pattern is deteriorating. Sigh. It seems a bad trip.
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Re: Bad days

Postby TwitchyDoc on December 3rd, 2012, 3:49 am

I feel the same like you, Edado...I am asking myself "if this is benign, why it is progressing over the years", and some more questions. Tegretol helps me, but its effect its diminishing with every usage. I wake up every day around 2:30 AM and have issues to fall back asleep...
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Re: Bad days

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