If you could just answer 3 questions for this newb please?

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If you could just answer 3 questions for this newb please?

Postby tiggida on March 26th, 2011, 1:09 pm

Just wondering:
1) When it started for you, how many twitches were you getting a day?
2) What are your twitches at a day now?
3) If they are less, what changed it? Time? Meds?

Mine started at thousands a day and am now down to 100's. The biggest change in my body is that I became pregnant. Around the time I noticed that the symptoms just drastically dropped one day, It ended up that this is around the time I concieved. I am hoping that it was just going to ease up on it's own anyway, even if I never ended up pregnant. I am dreading that when the baby is born it will go full blown again!
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Re: If you could just answer 3 questions for this newb please?

Postby RandyR on March 26th, 2011, 1:37 pm

1) When it started for you, how many twitches were you getting a day? Lot's, Way to many to count.
2) What are your twitches at a day now? 7 months in and still the same, though I will have days were they seem to be less.
3) If they are less, what changed it? Time? Meds? Nothing so far has changed them that I have tried...
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Re: If you could just answer 3 questions for this newb please?

Postby aussie sufferer on March 26th, 2011, 9:10 pm

Tigg...
about 16 month as ago- 'way too many to count'
hard to say- still heaps, I just dont notice them as much now. More widespread now and sensory stuff as well. Always new surprises.
some days appears less ( not caring anymore??), or less intense. anxiety meds has helped.
Cant help with the pregnancy/conception thing..sorry :) but keep us posted. You cant help what you cant control, but not worth the energy worring about it. It is what it is. It may or may not come back?? I guess you could keep falling preganant. :wink:

Guys you need to give it some time, from a mental ( especially the mental side) and physical perspective. It is not an overnight thing....
cheers/take care
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Re: If you could just answer 3 questions for this newb please?

Postby jbaine on March 26th, 2011, 9:37 pm

Mine started about 7 months ago as well. It started out with a few a day untill I googled it....then it went to thousands a day.
After a few months it has calmed down some to maybe a few hundred or less a day.
I started taking Clonazapam(same thing as Klonopin)after a month of symptoms. I stopped taking it about 3 weeks to a month ago because I didn't like the way it made me feel. I have been on 10mg of Lexapro for the last 6 months. I can't really tell if helps or not.
Jen : )
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Re: If you could just answer 3 questions for this newb please?

Postby allmylove16 on March 27th, 2011, 12:11 pm

Just wondering:
1) When it started for you, how many twitches were you getting a day?
near the thousands

2) What are your twitches at a day now?
several hundred

3) If they are less, what changed it? Time? Meds?
definitely meds. Only 6 mos into it so enough time hasn't passed for me to feel comfortable.
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Re: If you could just answer 3 questions for this newb please?

Postby tiggida on March 27th, 2011, 2:12 pm

allmylove,
what meds are you taking? When this all started for me I started Gabapentin, it seemed to help a little but it was still quite a bit of twitching. My twitching calmed to the hundreds after I became pregnant. I can live with it like this, but if after the baby is born it flares up to thousands again, that is just insane. I think I would go crazy, so if you could let me know what meds you are on, then maybe I can take them if needed after the baby.
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Re: If you could just answer 3 questions for this newb please?

Postby raindog on March 27th, 2011, 6:12 pm

1) When it started for you, how many twitches were you getting a day? at least one a second
2) What are your twitches at a day now? same as above
3) If they are less, what changed it? Time? Meds?
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Re: If you could just answer 3 questions for this newb please?

Postby dARR on March 27th, 2011, 6:14 pm

1) At least 1 per minute going up to 100s per minute.
2) No real change.
3) Vitamin E has helped somewhat but not a lot.
He who fights with Monsters might take care lest he thereby become a Monster and if you gaze long into the Abyss the Abyss also gazes into you. Fredrich Nietzche, Beyond Good and Evil
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Re: If you could just answer 3 questions for this newb please?

Postby tiggida on March 27th, 2011, 6:39 pm

raindog, is it just the one leg then? Wow,I watched the video's, pretty intense, thanks for sharing. I would say that mine were like that in the beginning too, but instead of one area, it was happening all over. Now it's still all over, but not as intense. I feel that my pregnancy has relaxed it alot and am hoping that after the baby is born , it doesn't come back full blown again.
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Re: If you could just answer 3 questions for this newb please?

Postby Rebecca on March 28th, 2011, 8:39 am

1) When it started for you, how many twitches were you getting a day? Hundreds that quickly became thousands. Calves and feet are always twitching.
2) What are your twitches at a day now? The same.
3) If they are less, what changed it? Time? Meds?
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Re: If you could just answer 3 questions for this newb please?

Postby raindog on March 28th, 2011, 6:47 pm

tiggida wrote:raindog, is it just the one leg then? Wow,I watched the video's, pretty intense, thanks for sharing. I would say that mine were like that in the beginning too, but instead of one area, it was happening all over. Now it's still all over, but not as intense. I feel that my pregnancy has relaxed it alot and am hoping that after the baby is born , it doesn't come back full blown again.
Tanya


Tiggida Dont think mine eases off any tbh r leg 60% l leg 30% remaing parts of my body 10% lot of stiffness muscle pain fatigue cramping etc with a boat load of other non specific symptoms, also 2 poor emgs and in the past 12 months ive developed flat reflexes in both legs. However i remain with good motor strength no weakness or atrophy. My latest consultation suggested a peripheral nerve hyperexcitability syndrome of the neuromuscular junction of unknown etiology and i now have to see someone else to seeif he can pick up on a cause (vgkc was negative)

I did another video that i intend to put up soon which i think will be able to show / demonstrate neuromyotonic discharges in my foot with cramping and rippling in my clalf

BTW dont panic he mentioned it should have little impact on my life and thinks pain and symptom management is the way forward as there is no cure for these syndromes

Also wishing you all the best with the pregnancy. :wink:
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Re: If you could just answer 3 questions for this newb please?

Postby tiggida on March 28th, 2011, 9:08 pm

Tiggida Dont think mine eases off any tbh r leg 60% l leg 30% remaing parts of my body 10% lot of stiffness muscle pain fatigue cramping etc with a boat load of other non specific symptoms, also 2 poor emgs and in the past 12 months ive developed flat reflexes in both legs. However i remain with good motor strength no weakness or atrophy. My latest consultation suggested a peripheral nerve hyperexcitability syndrome of the neuromuscular junction of unknown etiology and i now have to see someone else to seeif he can pick up on a cause (vgkc was negative)

I did another video that i intend to put up soon which i think will be able to show / demonstrate neuromyotonic discharges in my foot with cramping and rippling in my clalf

BTW dont panic he mentioned it should have little impact on my life and thinks pain and symptom management is the way forward as there is no cure for these syndromes
Also wishing you all the best with the pregnancy. :wink
wow, thanks for clarifying. So what you have wouldn't be considered benign fasciculation syndrome even though it is benign then? Wow, all I can say is wow. Are you doing okay emotionally then with all of this? It stinks that there are no meds to stop these kinds of things. Just manage it as best possible huh? Thankful that it is benign though...wishing you the best too, I hope there is some combo of meds out there that can manage your symptoms well.
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Re: If you could just answer 3 questions for this newb please?

Postby raindog on March 29th, 2011, 5:56 am

tiggida wrote:
Tiggida Dont think mine eases off any tbh r leg 60% l leg 30% remaing parts of my body 10% lot of stiffness muscle pain fatigue cramping etc with a boat load of other non specific symptoms, also 2 poor emgs and in the past 12 months ive developed flat reflexes in both legs. However i remain with good motor strength no weakness or atrophy. My latest consultation suggested a peripheral nerve hyperexcitability syndrome of the neuromuscular junction of unknown etiology and i now have to see someone else to seeif he can pick up on a cause (vgkc was negative)

I did another video that i intend to put up soon which i think will be able to show / demonstrate neuromyotonic discharges in my foot with cramping and rippling in my clalf

BTW dont panic he mentioned it should have little impact on my life and thinks pain and symptom management is the way forward as there is no cure for these syndromes
Also wishing you all the best with the pregnancy. :wink
wow, thanks for clarifying. So what you have wouldn't be considered benign fasciculation syndrome even though it is benign then? Wow, all I can say is wow. Are you doing okay emotionally then with all of this? It stinks that there are no meds to stop these kinds of things. Just manage it as best possible huh? Thankful that it is benign though...wishing you the best too, I hope there is some combo of meds out there that can manage your symptoms well.


My best treatment is to get out and play my favourite hobby of crown green bowling which you may not have a clue what it is hence the link below

http://www.youtube.com/watch?v=rnu17T1T3iw

My only med at the moment is a tramadol before bed with a pint of guinness ....i was wanting to try LDN (low dose naltrextone) as its works by making your own body create endorphins and which then help your own autoimmune system. more info below but my neuro and gp said they wont perscribe a treatment they know nothing about

http://www.msrc.co.uk/printable.cfm?pageid=651

Fingers Xed that the new doc might take pitty on me and let me at least give it a go. :lol:
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Re: If you could just answer 3 questions for this newb please?

Postby TwitchyDoc on March 29th, 2011, 6:22 am

My random bodywide fasciculations nearly disappeared after proper hydratation. Many people do not realize that long-term dehydration is something you do not feel bad about.
You should drink 0,5L for each 15 kg of your weight. If you were hypohydrated like I was, first days it will go in and out pretty quickly :) But to me, it definitely helped.
Not mentioning that coffees etc. do not count as proper water intake.
Something that you can try.
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Re: If you could just answer 3 questions for this newb please?

Postby bfshopeful on March 29th, 2011, 7:45 pm

I know someone else that cleared up their twitching with proper hydration and that was a couple years ago so I know it stuck. My hydration is poor. Mostly coffee and soda. I will definiately have to give it a try. It is the least I can do right?

Anyways to answer your questions.

1) Too many to count. Thousands for sure.
2) They have slowed and I have some days that are horrible and some where I feel none at all, but my worst day now is comparable to my best day in the beginning.
3) I think for me it was just time. I do take xanax in the morning and at night. That helps me deal with them at least. I did try valium for a while and that helped for sure. I think I may switch back at some point.
"It's mind over matter. If you don't mind, it don't matter."
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Re: If you could just answer 3 questions for this newb please?

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