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Reply with quote  #1 
Indefinitely? Five years? A year? I've read here on this forum about some cases where stopping the supplements have triggered more episodes, with the episodes no longer helping once the supplements are again resumed. So, if you have been vomiting for a few years, and then beginning  to take supplements makes the episodes go away... just like that....then, theoretically, wouldn't it be necessary to take them forever?? How does this work?

Thanks!

Editing to add that, in my son's case, it is a suspected mitochondrial problem.

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Mom to an 18 year old son who has CVS/abdominal migraine, hiatal hernia, connective tissue dysplasias with joint hypermobility, and possible dysautonomia and mitochondrial disorder.
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ginny

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Reply with quote  #2 
We have only been trying the supplements for a few years but if they are working then they are helping in an area where the help is needed so it would be logical to keep using them.  It might be that during times of stress the supplements are needed but if it takes a few months to build to optimal levels then you would need to preplan stressful times.



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ginny CVSA Moderator
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Reply with quote  #3 
Thank you. This is what I was thinking, too. It's helping where help is needed. I know some people stop having CVS as they get older, or they turn into migraines in the head. I don't know if this holds true for patients who have CVS with mitochondrial dysfunction as an underlying cause. I would think that in that case, the underlying problem is not going to go away, so these are the patients in whom the CVS could potentially be a life long thing, but I am only speculating...I really don't know. Of course, my son will keep taking the supplements. Maybe in years to come we will have more answers. Thanks again, Ginny. Hope you are doing well. [smile]
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Mom to an 18 year old son who has CVS/abdominal migraine, hiatal hernia, connective tissue dysplasias with joint hypermobility, and possible dysautonomia and mitochondrial disorder.
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Doc

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Reply with quote  #4 
I think you need to try them for several months 5-6 before deciding if, or how much of a change has occurred. If you appreciate nothing at all after that time, then you might wean off to save on cost. Weaning off vs. stopping cold turkey should help you avoid any scenario where they don't work when you resume taking them. But I think they help even when we don't know it. They help health in general, so I think they help us even in that regard. If you appreciate any change at all that is positive, I recommend continuing to take them. As your body heals they might continue to work better.
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34 year old veterinarian. Adult onset at 25. Some recent flare ups but working through it! Breathe, stretch, relax.
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ginny

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Reply with quote  #5 
The other issue is when the supplements are bought not at a pharmceutical quality and you are not quite sure if your capsules contain the dosage as stated. Do they have a bit less, a lot less than what is said on the bottle?  It can help to read reviews by others and to call the 800 number to be sure the CoQ10 is derived from natural sources.



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ginny CVSA Moderator
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Reply with quote  #6 
Thanks for the replies! Doc, the supplements seem to be working for my son. [smile] His neurologist suspects a mito thing with his CVS. Ginny, yes, we use the good kind. It's the Kaneka type made by Jarrow. It's a great brand. All natural. I think they do contain Vitamin E, but my son is not already taking large doses of that, anyway.

I was just wondering if they are working....then what?? Take them forever? The thing is we really do not have access to the proper doctor for treatment. We would have to travel to find a specialist that could help with this. Our doctors are good, but my son's GI has dismissed my son from his care, and the neurologist is the one that said we would need to go out of state to get more answers. He's doing so well, so nothing seems urgent right now. Maybe I could call these specialists and ask at some point. I was just pondering this.


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Mom to an 18 year old son who has CVS/abdominal migraine, hiatal hernia, connective tissue dysplasias with joint hypermobility, and possible dysautonomia and mitochondrial disorder.
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Doc

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Reply with quote  #7 
Right now, that's my plan. I'll take them potentially forever, until I have a reason not to anyway.
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34 year old veterinarian. Adult onset at 25. Some recent flare ups but working through it! Breathe, stretch, relax.
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