1st movement after waking triggers violent muscle spasms

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Re: 1st movement after waking triggers violent muscle spasms

Postby THX1138 » Wed Oct 04, 2017 10:33 pm

jimmylegs wrote::thumbie: re zn and cu. time for tests end of oct i hope :D

I'm not quite sure. Today I received a letter from the insurance company saying they wouldn't pay for the last zinc and copper labs. I will be talking to some people about this matter and see about getting it straightened out.
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Re: 1st movement after waking triggers violent muscle spasms

Postby THX1138 » Thu Oct 12, 2017 9:52 am

One thing I didn't mention (because it didn't seem related to muscle spasms in the morning) was that, eating causes me to go into a rather serious mental fog and causes my muscles to get tight. This seems to happen with any kind of food (including paleo AIP approved foods). This happens, to a large extent, from even taking a bite of food. After eating I also get congested, which seems to be a thickening of the mucus and also more mucus production.

Eating = mental fog and muscle tightness

But also:
Not eating enough during the day = mental fog and muscle tightness. And then I find that very late at night, often times (after I've been eating enough during the day) muscle tightness gets much better and I can even take a few steps unaided as well as being able to raise my feet several inches off the floor (instead of scraping the floor).
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Re: 1st movement after waking triggers violent muscle spasms

Postby ElliotB » Thu Oct 12, 2017 11:14 am

Are there specific foods do not cause this reaction?
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Re: 1st movement after waking triggers violent muscle spasms

Postby Scott1 » Thu Oct 12, 2017 12:32 pm

Have you started the CoQ10 and aceytl-l-carnitine ? What dosage are you taking?

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Re: 1st movement after waking triggers violent muscle spasms

Postby THX1138 » Thu Oct 12, 2017 3:27 pm

Are there specific foods do not cause this reaction?
None that I'm aware of.

Have you started the CoQ10 and aceytl-l-carnitine ? What dosage are you taking?
So far:
Coenzyme Q10 - 100 mg / day
Acetyl-l-carnitine - 500 mg / day
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Re: 1st movement after waking triggers violent muscle spasms

Postby Scott1 » Thu Oct 12, 2017 5:23 pm

You probably need 300mg CoQ10 (at least- I'm at 750mg) and 2x 2000mg to make a difference.

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Re: 1st movement after waking triggers violent muscle spasms

Postby THX1138 » Thu Oct 12, 2017 6:37 pm

Thanks :-D
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Re: 1st movement after waking triggers violent muscle spasms

Postby David1949 » Sat Oct 14, 2017 12:58 pm

"1st movement after waking triggers violent muscle spasms"

Yeah I get that too, although it just started this year and they're not too violent ...yet.
The bigger problem for me with spasms is that I get them in my leg at night and it causes my leg to jerk about every 30 seconds. It can keep me awake all night some times. Rarely get them during the daytime.

Things that help:
Keep my body cool- take off covers.
Eliminate caffeine and alcohol, reduce sugar and salt as much as possible.


FYI I am a 68 year old male. MS was dxed 21 years ago. I have the primary progressive variety. My self assessed EDSS is 6 -6.5.
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Re: 1st movement after waking triggers violent muscle spasms

Postby THX1138 » Sat Oct 14, 2017 6:03 pm

I tried taking some of the dantrolene I have on hand. I took 25 mg before bed. It didn't seem to do anything. Am I doing something wrong ?
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Re: 1st movement after waking triggers violent muscle spasms

Postby Scott1 » Sat Oct 14, 2017 7:20 pm

Hi,

Whoa!!! Be careful here. That is plenty. I doubt you have given yourself enough time to strengthen your muscles so expect to suddenly feel weak. The only answer is to keep exercising through that weakness. I've often mentioned eccentric muscle movement which is what you get with Pilates. The work you described earlier didn't sound like eccentric movement.

I'd rather you did a few months of Pilates leg and foot work and got into a regular massage routine before you started this.

In simple terms, if you are tight and weak you will have restricted movement. If your muscles are released and weak then you won't be able to move. You absolutely need to be exercising the right way or you will end up flat on the floor and be cursing me.

it is the right thing to take but the timing is very important. Don't pop a pill and wait for your strength to return because it won't. It's a very hands on strategy if you use this.

It shouldn't be something you just have on hand. Higher doses can play havoc with your liver.
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Re: 1st movement after waking triggers violent muscle spasms

Postby THX1138 » Sat Oct 14, 2017 9:20 pm

I re-checked the bottle of the old prescription and it is 25 mg dantrolene sodium. I haven't taken it many times but never has it made me feel very weak (just a little). In fact, not even a 3.5 gram magnesium IV made me feel weak at all, but instead, transformed my walking for part of a day. This was about 2 years ago. Am I weird or something :?: :confused: :lol:
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Re: 1st movement after waking triggers violent muscle spasms

Postby Scott1 » Sat Oct 14, 2017 9:47 pm

Hi,

No, you're a definitely not weird. It takes a few doses to get into the system. 25mg is the minimum dose. Normally it is twice daily. You can go a little above that but I urge you not to take that medication from an old order.

This stuff is used to stop an organ transplant recipients body spasming during the procedure by blocking the gate to calcium inside the cell called the Ryanadine receptor. It is definitely not something to experiment with as it can completely destroy your liver and you need medical guidance.

You may find this video of some help - https://www.youtube.com/watch?annotatio ... LhxnGMBovQ

I suggest you watch and then spend several hours looking at youtube clips you can follow to reinforce your understanding.

What you are doing looks wrong to me. You need to continue the good work you've done on exercise recently, then extend that into a pilates studio for six months. In addition, find a good person to exercise those muscles through massage and think about finding someone who can do some dry needling.
If you do not do this then expect to fail.

We are hopefully on our way to influencing your levels of fatigue with the CoQ10 and aceytl-l-carnitine. However, you are thinking in weeks and you need to think in months.

It took me two years exercising three times a week plus nine shots of botox in my left leg so I could stretch it, a year as an outpatient with the hospital and a year on Dantrium to do what I can do in the video on "Beyond Avonex and Valtrex's" last post . That was all happening concurrently. Don't rush this. Prepare properly or plan to fail.

Use doctors for the monitoring of Dantrium. You are playing in the big school now so be very careful.

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Re: 1st movement after waking triggers violent muscle spasms

Postby Zyklon » Sun Oct 15, 2017 6:38 am

Last week I have noticed that if I eat food with too much sugar, tightness and cramp like feeling increases when I wake up.
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Re: 1st movement after waking triggers violent muscle spasms

Postby THX1138 » Sun Oct 15, 2017 7:48 am

5 Nutrients You’re Deficient In… If You Eat Too Much Sugar
3. Magnesium

Magnesium is a serious rock-star mineral that’s only started receiving the attention it deserves in recent years. Along with regulating muscle and nerve function, making protein, building bone, synthesizing DNA, and regulating blood sugar levels, magnesium is required by literally every organ in our bodies. In other words, it’s pretty important!

Both a high sugar intake and elevated insulin levels (which can result from a high intake of refined carbohydrates, including sugar) have been shown to increase the excretion of magnesium by the kidneys, by inhibiting tubular reabsorption (the same process that leads to calcium excretion) and by guzzling through the body’s magnesium reserves during sugar metabolism. That’s partly why people with diabetes or chronically high insulin tend to have higher magnesium requirements and more rapid magnesium depletion.

In fact, the interaction between sugar and magnesium is a two-way street: along with sugar depleting magnesium, magnesium plays a role in stabilizing blood sugar (by influencing cellular uptake of glucose and insulin secretion). So, when magnesium levels are too low, blood sugar regulation can also be impaired—setting the stage for even greater magnesium depletion due to the higher levels of glucose in the blood!

https://www.thepaleomom.com/5-nutrients-youre-deficient-in-if-you-eat-too-much-sugar/
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Re: 1st movement after waking triggers violent muscle spasms

Postby hellokc » Mon Oct 16, 2017 6:30 am

THX1138 wrote:
Are there specific foods do not cause this reaction?
None that I'm aware of.

Have you started the CoQ10 and aceytl-l-carnitine ? What dosage are you taking?
So far:
Coenzyme Q10 - 100 mg / day
Acetyl-l-carnitine - 500 mg / day


It appears that the CoQ10 and MS research used 500 mg/day. The challenge is that we do not know the form of CoQ10 used. A water and fat-soluble form of CoQ10 is better absorbed and leads to higher plasma levels, so you may not need to take as much. You could start with 100mg and walk up every few weeks.
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