Bad days

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Re: Bad days

Postby edado69 on December 3rd, 2012, 5:03 am

TwitchyDoc wrote: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...

As you know, I am not excited at all about rx when it is not crystal clear what they could do for that given condition. And we cannot say that we know exactly what we are dealing with. On the bright side, I had several good nights. Last night it was not a good one, but I am not sure why. Twitching had been quite active yesterday and perhaps this is why, or maybe not...Physical performaces are good and stable. I think we need to focus on keep good care of us. This is the only thing we can do for the time being.
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Re: Bad days

Postby edado69 on December 7th, 2013, 3:36 am

edado69 wrote:
TwitchyDoc wrote: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...

As you know, I am not excited at all about rx when it is not crystal clear what they could do for that given condition. And we cannot say that we know exactly what we are dealing with. On the bright side, I had several good nights. Last night it was not a good one, but I am not sure why. Twitching had been quite active yesterday and perhaps this is why, or maybe not...Physical performaces are good and stable. I think we need to focus on keep good care of us. This is the only thing we can do for the time being.

What a bad time!
My twitches got dramatically worse from neck to toes.
Last night was awful.
Why?
Surely I can see the progression in terms of frequency and distribution of twitches. Far more now at the same time. I was just now digging in my old posts.
I can just hope for better times.
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Re: Bad days

Postby edado69 on January 15th, 2014, 7:15 am

Had a few decent weeks, but 3 days ago thumb moving powerfully and last couple of nights, neck to toes twitching a lot. Also cramp to the right toe. Difficult time.
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Re: Bad days

Postby edado69 on January 28th, 2014, 11:20 am

edado69 wrote:Had a few decent weeks, but 3 days ago thumb moving powerfully and last couple of nights, neck to toes twitching a lot. Also cramp to the right toe. Difficult time.


Bad "patch" continues to a scary point. Went training this PM, and done a lot of "testing". Doing well, or well enough. What to think? I hope to have a better night tonight. 4 PM it was fireworks last night. Really impossible to sleep.
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Re: Bad days

Postby edado69 on January 31st, 2014, 1:49 pm

edado69 wrote:
edado69 wrote:Had a few decent weeks, but 3 days ago thumb moving powerfully and last couple of nights, neck to toes twitching a lot. Also cramp to the right toe. Difficult time.


Bad "patch" continues to a scary point. Went training this PM, and done a lot of "testing". Doing well, or well enough. What to think? I hope to have a better night tonight. 4 PM it was fireworks last night. Really impossible to sleep.


not getting any better, if anything worse. Sigh!
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Re: Bad days

Postby edado69 on February 1st, 2014, 4:41 am

My constant posting is in keeping with the unprecedented pattern of my fasciculations. At the least I can now see that there is a difference between twitching and constant, generalized, popping up - many places everywhere at the same time. The change has been somewhat abrupt over the last couple of weeks. Reading back my old post, I can see that I had changes of pattern and fasciculations got worse overall, but this is on a different level. I reduced my training, but this made no difference. Actually, should there be any relationship, it made it worse.
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Re: Bad days

Postby leaflea on February 1st, 2014, 7:58 pm

Sorry you are struggling so. I am still six years behind you so certainly can't offer any advice except to check your anxiety level and general level of happiness and check it carefully. Sometimes I am more stressed than I realize. Often when I have had any somatic symptom my husband asks "what are you stressed/worrying about?" It made me mad and often I could not think of anything right away, but more often than not, I think he is probably right. Some of us are just more "wired" to carry stress in our physical bodies and twitching can be a result of doing that too much for too long.
Matthew 6:27 Who of you by worrying can add a single hour to his life?
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Re: Bad days

Postby edado69 on February 3rd, 2014, 8:46 am

leaflea wrote:Sorry you are struggling so. I am still six years behind you so certainly can't offer any advice except to check your anxiety level and general level of happiness and check it carefully. Sometimes I am more stressed than I realize. Often when I have had any somatic symptom my husband asks "what are you stressed/worrying about?" It made me mad and often I could not think of anything right away, but more often than not, I think he is probably right. Some of us are just more "wired" to carry stress in our physical bodies and twitching can be a result of doing that too much for too long.

It is kind from you to post on this sort of "personal diary" and give him your support.
Well, it would be a non-sense telling you that I am not "distressed" by all this, but the change was very abrupt - you have noticed that this is not the first time I have observed a sudden change. When it did take place, I promise you I was not under any psychological distress and I would define myself as a quite relaxed person, with the weakness of feeling very attached to his family. So, it is in essence the fear of what happen next, and the tiredness, having in mind that I am the one that has to provide for his little ones (economically and emotionally), to affect me badly.
My taken on what is affecting me is that it is a problem with psychological outcomes, but I am quite sure there is something else to have triggered it.
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Re: Bad days

Postby edado69 on February 20th, 2014, 9:47 am

A few days when at the least I could sleep, but now 5 days of very florid, constant, fasciculations to lower and upper limbs, and back.
No sleep, and this is not because I am not tired.
I have tried my usual remedy (gym in the evening): not helping.
The most remarkable aspect is the fact that twitches are more diffused (many fasciculations on the same muscle) and constant.
Hands are particularly affected.
Scary as much as bothersome (the two are interchangeable...). But, I am trying my best.

PS: still doing press-ups on the tip of my fingers
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Re: Bad days

Postby edado69 on February 22nd, 2014, 4:02 am

What a nightmare! I am almost 7 years in and I would not have expected to write updates such as this one. Yesterday I was doing some running and I got cramps. NEVER had this before. I was at my usual pace. Last night, cramps to my adductors stretching my lower limb. Again, unprecedented. I slept nothing at all. With florid, profuse, fasciculations and worsening aches...Horror. I am at the lowest point ever and I really fear for the worse.
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Re: Bad days

Postby TwitchyDoc on February 22nd, 2014, 5:13 am

edado, do not worry. From my experience (after 7 years too), I can tell you that I am sure fasciculations are worse than 2-3 years ago. Does it ever get better in your case (e.g. good week, bad week)?
The recent proceedings in the neuroimmunology has shown a lot of interesting things (like the gluten sensitivity causing fasciculations and even in one case mimicking full blown ALS). I wanted to exlude as many allergens as possible and only now eat vegetables, fruits, meat (unprocessed), rice and potatoes. No milk, eggs alcohol etc. I do notice improvement but only time will tell as it would take at least 1-3 months. I believe there must be an environmental factor as the symptoms fluctuate for many of us and continue for years.
If you really want to have a break from fasciculations, I suggest going on the Tegretol 3x200mg.
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Re: Bad days

Postby edado69 on February 24th, 2014, 5:28 am

TwitchyDoc wrote:edado, do not worry. From my experience (after 7 years too), I can tell you that I am sure fasciculations are worse than 2-3 years ago. Does it ever get better in your case (e.g. good week, bad week)?
The recent proceedings in the neuroimmunology has shown a lot of interesting things (like the gluten sensitivity causing fasciculations and even in one case mimicking full blown ALS). I wanted to exlude as many allergens as possible and only now eat vegetables, fruits, meat (unprocessed), rice and potatoes. No milk, eggs alcohol etc. I do notice improvement but only time will tell as it would take at least 1-3 months. I believe there must be an environmental factor as the symptoms fluctuate for many of us and continue for years.
If you really want to have a break from fasciculations, I suggest going on the Tegretol 3x200mg.


Many thanks for your support.
I have to say, no "good days" lately. That fluctuations you are referring to are hard to discriminate when you are under "heavy fire", generalized, 24/7. It is like something may reduce a bit, or stop, but you have many other places firing at once.
I want to think that body/brain get used to everything and I do not wish to suppress something I am not sure why is happening. Perhaps, fasciculations may have a positive role to correct something wrong/repair.
I have tried diet changes of all sorts, including the ones you are correctly suggesting. It has been a flop for me.
PM if you like, anytime.
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Re: Bad days

Postby edado69 on February 24th, 2014, 5:28 am

TwitchyDoc wrote:edado, do not worry. From my experience (after 7 years too), I can tell you that I am sure fasciculations are worse than 2-3 years ago. Does it ever get better in your case (e.g. good week, bad week)?
The recent proceedings in the neuroimmunology has shown a lot of interesting things (like the gluten sensitivity causing fasciculations and even in one case mimicking full blown ALS). I wanted to exlude as many allergens as possible and only now eat vegetables, fruits, meat (unprocessed), rice and potatoes. No milk, eggs alcohol etc. I do notice improvement but only time will tell as it would take at least 1-3 months. I believe there must be an environmental factor as the symptoms fluctuate for many of us and continue for years.
If you really want to have a break from fasciculations, I suggest going on the Tegretol 3x200mg.


Many thanks for your support.
I have to say, no "good days" lately. That fluctuations you are referring to are hard to discriminate when you are under "heavy fire", generalized, 24/7. It is like something may reduce a bit, or stop, but you have many other places firing at once.
I want to think that body/brain get used to everything and I do not wish to suppress something I am not sure why is happening. Perhaps, fasciculations may have a positive role to correct something wrong/repair.
I have tried diet changes of all sorts, including the ones you are correctly suggesting. It has been a flop for me.
PM if you like, anytime.
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Re: Bad days

Postby edado69 on March 8th, 2014, 7:17 am

Constant, bothersome, 2 weeks shoulder girdle muscles twitching on the left. Never had it before this way.
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Re: Bad days

Postby edado69 on March 10th, 2014, 3:24 am

edado69 wrote:Constant, bothersome, 2 weeks shoulder girdle muscles twitching on the left. Never had it before this way.

Wake up 4 PM with left girdle twitching. Also some strange pain there which comes and goes.
Right foot twitching everywhere on its medial aspect and plantar aspect at all the times. I can easily triger cramps as well.
Of course, I also twitch everywhere, albeit more on and off during the day. Left shoulder and right foot are the body parts where I have been experiencing something different.
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Re: Bad days

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