Myotonia Congenita

Posted by kimcvi @kimcvi, Jul 20, 2020

Hello, does anyone here have MC and how to relive muscle pain

@kimcvi

Hello, yes it’s like a Charlie horse. MC is not suppose cause much pain and it’s suppose to be relieved with walking or exercising but the more I do the harder my muscles work and I have pain. My foot is all messed up due to the MC and if I do any substantial walking I wear AFO’s. I was hoping to connect with someone who is going through this but it is rare and none of my Dr.’s here at home can help me, I do a lot of non urgent messaging to my Dr. at the Mayo (he is Awesome along with his nurse)

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@kimcvi Is your diagnosis correct? We’re you diagnosed and a young age with this? I ask because myofascial pain is often misdiagnosed. There is a book called “Healing through Trigger Point Therapy: A Guide to Fibromyalgia, Myofascial Pain and Dysfunction” by Devin Starlanyl and John Sharkey. It is a bit technical and on the harder to read side. Devin is a physical therapist and runs a Facebook group called “Fibromyalgia, myofascial pain and dysfunction”. She has many downloadable files in links from that website with suggestions. If your diagnosis is accurate, some of her suggestions might still help you relieve pain, although the main focus of the group is evident from the title of the group. She has resource for bodyworkers, etc., too. I personally have some chronic myofascial pain and I’ve posted very specific suggestions in the chronic pain threads such as “pudendal nerve” thread and “pain in the butt – can’t sit down” thread about using exercise and certain dietary supplements to lessen pain and tension (at one time I had great hypermyotonic tension in both legs and all manner of myofascial pain and accompanying nerve pain in the hips and legs, too). The exercise and supplements were able to get me off nortriptyline for nerve pain and things are much better now. What I’m saying is that certain supplements and approaches you come across might help you – even though your condition is rather rare and unique. Good luck.

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Hi, I appreciate your suggestions. I’m having another Genetic test to find out which one of the MC’s I have. It is a mutation or depletion of the muscle gene. I asked if there is any supplements and there is nothing I can take to make my muscles work properly. Once we pinpoint which MC I have then we can properly treat it.

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@johnbishop

Hi @avmcbellar, Although the Protocol group primarily uses Facebook for support and questions, they setup a website for ordering their new Protocol 525 product which reduces the total number of pills we had to take daily. The website still has links to order the original products from Amazon and they also have instructions for ramping up on R-ALA since it does cause issues for most people when they start the high doses. Here's the website – https://solutions2pnpd.com/ The instruction page is listed at the bottom and includes the original vs 525 product comparison as well as the instructions on how to ramp up on the R-ALA.

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@johnbishop, @jesfactsmon Hi, I have tried taking the alpha lipoic acid(ALA) in different ways to decrease my upset stomach. I found by eating food first then taking a 600mg capsule with more food decreased the degree of my upset stomach to almost zero. It is much more tolerable. In the future I may try a 300mg capsule twice a day. I saw online a recommendation of 600mg daily helped with neuropathy for diabetics. Although I am not a diabetic, I know 600mg daily provided benefits for me. I also read Acetyl L-Carnitine Amino Acid can provide relief from nerve pain. Has anyone tried the ALCA acid? I was concerned for a vegetarian diet but supplements are available. Apparently some dairy foods contain small amounts of ALCA.

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@avmcbellar

@johnbishop, @jesfactsmon Hi, I have tried taking the alpha lipoic acid(ALA) in different ways to decrease my upset stomach. I found by eating food first then taking a 600mg capsule with more food decreased the degree of my upset stomach to almost zero. It is much more tolerable. In the future I may try a 300mg capsule twice a day. I saw online a recommendation of 600mg daily helped with neuropathy for diabetics. Although I am not a diabetic, I know 600mg daily provided benefits for me. I also read Acetyl L-Carnitine Amino Acid can provide relief from nerve pain. Has anyone tried the ALCA acid? I was concerned for a vegetarian diet but supplements are available. Apparently some dairy foods contain small amounts of ALCA.

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@avmcbellar I am not on the protocol but I'd devised something similar based on research (I do not go so high on the B-vitamins). I get my healthy fats from diet as well as 1 tblsp of hempseed oil (which is all fat). I do take carnitine. I take 500 mg per day. I did not notice a decrease in pain that I would specifically attribute to that, but then again, I don't know for sure. I tend to have high triglyerides so more carnitine might help burn fats and lower triglycerides (and when you take ALA it is a fat; the center molecule at the fat burning cycle is carnitine). A small amount of carnitine (500 mg – 1000 mg) should be well tolerated. Carnitine can be metabloized to TMAO which, at higher levels, may not be good. However, that whole issue is complicated by way of some gut bacteria lower TMAO and some raise it. But, like I said, small amounts of carnitine might be helpful – especially if you don't eat much red meat (carnitine is and amino acid – but it is not one of the 20 common amino acids found in proteins – so vegetarians, in paricular might need a supplement. I used nutricost brand from Amazon. I also take turmeric, other flaviniods (especially in green powder supplements) and extra vitamin C, too.

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@avmcbellar

@johnbishop, @jesfactsmon Hi, I have tried taking the alpha lipoic acid(ALA) in different ways to decrease my upset stomach. I found by eating food first then taking a 600mg capsule with more food decreased the degree of my upset stomach to almost zero. It is much more tolerable. In the future I may try a 300mg capsule twice a day. I saw online a recommendation of 600mg daily helped with neuropathy for diabetics. Although I am not a diabetic, I know 600mg daily provided benefits for me. I also read Acetyl L-Carnitine Amino Acid can provide relief from nerve pain. Has anyone tried the ALCA acid? I was concerned for a vegetarian diet but supplements are available. Apparently some dairy foods contain small amounts of ALCA.

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@avmcbellar, Acetyl L-Carnitine is part of the 525 Protocol product that I take (500 mg X 2 daily). Here is an article that provides a little more information on ALC.

The Therapeutic Effects of Acetyl-L-Carnitine on Peripheral Neuropathy: A Review of the Literature: https://www.naturalmedicinejournal.com/journal/2010-08/therapeutic-effects-acetyl-l-carnitine-peripheral-neuropathy-review-literature/

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@richman54660

@avmcbellar I am not on the protocol but I'd devised something similar based on research (I do not go so high on the B-vitamins). I get my healthy fats from diet as well as 1 tblsp of hempseed oil (which is all fat). I do take carnitine. I take 500 mg per day. I did not notice a decrease in pain that I would specifically attribute to that, but then again, I don't know for sure. I tend to have high triglyerides so more carnitine might help burn fats and lower triglycerides (and when you take ALA it is a fat; the center molecule at the fat burning cycle is carnitine). A small amount of carnitine (500 mg – 1000 mg) should be well tolerated. Carnitine can be metabloized to TMAO which, at higher levels, may not be good. However, that whole issue is complicated by way of some gut bacteria lower TMAO and some raise it. But, like I said, small amounts of carnitine might be helpful – especially if you don't eat much red meat (carnitine is and amino acid – but it is not one of the 20 common amino acids found in proteins – so vegetarians, in paricular might need a supplement. I used nutricost brand from Amazon. I also take turmeric, other flaviniods (especially in green powder supplements) and extra vitamin C, too.

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Hi @richman54660 thank you for the information. I know our bodies turn L-Carnitine into Acetyl L-Carnitine. Vegetarians or vegans do have a much lower amounts in their bodies. Since alpha lipoic acid improved my neuropathy and energy level, I am hoping with the combination of the two I will see an even greater improvement. Thanks again. Glad turmeric is helping. Summer time is always more difficult for people with muscle weakness or neuropathy because of the heat. Our bodies can’t deal with the heat because of the misread messages our brain receives. So in the mean time, we have to figure out what to do in order to get through it.

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@johnbishop

@avmcbellar, Acetyl L-Carnitine is part of the 525 Protocol product that I take (500 mg X 2 daily). Here is an article that provides a little more information on ALC.

The Therapeutic Effects of Acetyl-L-Carnitine on Peripheral Neuropathy: A Review of the Literature: https://www.naturalmedicinejournal.com/journal/2010-08/therapeutic-effects-acetyl-l-carnitine-peripheral-neuropathy-review-literature/

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@johnbishop thanks John for the article. I also read your feedback on taking Protocal. All the testimonials sound very positive. Unfortunately, I no longer have a facebook account nor do I want one but I did click on the link to order. I found it to be very expensive for a 30 day supply($193.20). For now, I plan to order the ALC to take along with the ALA. If I don’t feel an improvement with my neuropathy then I will consider the protocal. I was wondering if stopping the ALC would stop the benefits. I got the answer through the link you had sent. I agree taking the supplement would be much better than dealing with a medication and its side effects. At least you know 525 Protocal works for you. Thanks for the help!

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@avmcbellar

@johnbishop, @jesfactsmon Hi, I have tried taking the alpha lipoic acid(ALA) in different ways to decrease my upset stomach. I found by eating food first then taking a 600mg capsule with more food decreased the degree of my upset stomach to almost zero. It is much more tolerable. In the future I may try a 300mg capsule twice a day. I saw online a recommendation of 600mg daily helped with neuropathy for diabetics. Although I am not a diabetic, I know 600mg daily provided benefits for me. I also read Acetyl L-Carnitine Amino Acid can provide relief from nerve pain. Has anyone tried the ALCA acid? I was concerned for a vegetarian diet but supplements are available. Apparently some dairy foods contain small amounts of ALCA.

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Hi @avmcbellar in addition to RALA Linda and I take a number of things to help boost our mitochondria, which as you probably know, are prevalent throughout your body (literally in the trillions) and are responsible for the body's energy production. One of these is Acetyl L Carnitine (ALC). We take 2 500mg caps together each day with food. We take the RALA 15-30 minutes before this because it is supposed to aid the ALC. What I found out the ALC does is it helps your mitochondria burn fat and create more energy — especially for your muscles and brain. ALC has two main benefits: It shuttles fuel (in the form of fatty acids) to your muscle mitochondria, which ramps up your energy production and can increase endurance, and it also boosts brain power. If you google "r lipoic acid and acetyl l carnitine" you will find a number of articles which discuss the benefits of taking these 2 in conjunction with one another. The reason we take the two 500mg pills together is that I read (and this is purely from memory from a year ago) that your digestive system's enzymatic action will counter it to some extent so you need to take enough to still be effective, hence the 1000mg all at once and not divided into a 500mg dose twice a day. Best, Hank

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@jesfactsmon

Hi @avmcbellar in addition to RALA Linda and I take a number of things to help boost our mitochondria, which as you probably know, are prevalent throughout your body (literally in the trillions) and are responsible for the body's energy production. One of these is Acetyl L Carnitine (ALC). We take 2 500mg caps together each day with food. We take the RALA 15-30 minutes before this because it is supposed to aid the ALC. What I found out the ALC does is it helps your mitochondria burn fat and create more energy — especially for your muscles and brain. ALC has two main benefits: It shuttles fuel (in the form of fatty acids) to your muscle mitochondria, which ramps up your energy production and can increase endurance, and it also boosts brain power. If you google "r lipoic acid and acetyl l carnitine" you will find a number of articles which discuss the benefits of taking these 2 in conjunction with one another. The reason we take the two 500mg pills together is that I read (and this is purely from memory from a year ago) that your digestive system's enzymatic action will counter it to some extent so you need to take enough to still be effective, hence the 1000mg all at once and not divided into a 500mg dose twice a day. Best, Hank

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@avmcbellar It just hit me that for you to need to take your RALA with food means you would not be able to take it as we do, on an empty stomach 15-30 minutes before eating. But perhaps it's not the big a deal to take the RALA and ALC at the same time with food. Not really sure.

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@jesfactsmon

Hi @avmcbellar in addition to RALA Linda and I take a number of things to help boost our mitochondria, which as you probably know, are prevalent throughout your body (literally in the trillions) and are responsible for the body's energy production. One of these is Acetyl L Carnitine (ALC). We take 2 500mg caps together each day with food. We take the RALA 15-30 minutes before this because it is supposed to aid the ALC. What I found out the ALC does is it helps your mitochondria burn fat and create more energy — especially for your muscles and brain. ALC has two main benefits: It shuttles fuel (in the form of fatty acids) to your muscle mitochondria, which ramps up your energy production and can increase endurance, and it also boosts brain power. If you google "r lipoic acid and acetyl l carnitine" you will find a number of articles which discuss the benefits of taking these 2 in conjunction with one another. The reason we take the two 500mg pills together is that I read (and this is purely from memory from a year ago) that your digestive system's enzymatic action will counter it to some extent so you need to take enough to still be effective, hence the 1000mg all at once and not divided into a 500mg dose twice a day. Best, Hank

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@jesfactsmon Hi Hank, thank you for the advice. I am grateful for being able to take the ALA for now. Perhaps later on an empty stomach. Before my AVM I had graduated to taking the highest dose available for cayenne pepper capsules. No upset stomach when taken as directed with food. My husband tried but couldn’t tolerate it. So I became determined in finding a way to take the ALA. With the ALC I plan on a total daily dosage of 1000mg. Thanks for the dosage information you and your wife take for the ALA and ALC. It is very helpful. I will figure what will be easier on my stomach. Did you and Linda see a significant difference with the neuropathy pain?

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@avmcbellar

@jesfactsmon Hi Hank, thank you for the advice. I am grateful for being able to take the ALA for now. Perhaps later on an empty stomach. Before my AVM I had graduated to taking the highest dose available for cayenne pepper capsules. No upset stomach when taken as directed with food. My husband tried but couldn’t tolerate it. So I became determined in finding a way to take the ALA. With the ALC I plan on a total daily dosage of 1000mg. Thanks for the dosage information you and your wife take for the ALA and ALC. It is very helpful. I will figure what will be easier on my stomach. Did you and Linda see a significant difference with the neuropathy pain?

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I don't think she could know whether it helped or not. I got her and myself (in late 2018) on to so many things at once for boosting the mitochondria. Altogether she takes at least 28 different supplements a day and they change periodically. The mitochondria supplements included ALC, L Carnosine, PQQ, Mito-Q, Niagen and NAC. Actually she was already taking Niagen, but the others were new. We have since quit the PQQ as neither of us noticed much effect from it. The one she got the biggest energy boost from I think was Mito-Q. But as far as pain reduction, hard to say. One supplement she did find helped her neuropathy was Agmatine which I found out about online as a possible benefit for PN. She swore by that for a while, but at some point she started getting a case of hives and suspected the Agmatine due to when she took it and when the reaction occurred. By a total fluke I found some very obscure (not widely discussed) info about Agmatine in one paper that said it can cause a histamine reaction so she dropped it from her regimen. But you might look into it, she really loved it for a while. She also takes benfotiamine for PN but has been unable to say whether she notices any benefit.

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@jesfactsmon Vitacost where I get my vit min herbs . Has them both together they said in the literature that they compliment each other

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