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orsonhp

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Reply with quote  #1 

 I will post three messages to start this thread: Mito theory, coQ10, and L-carnitine. I also would like to refer people to the current issue of Code V which contains a great article written by Kathleen Adams about Dr. Boles’ research….And the website contains links for a number of his past research papers.

Mitochondrial Theory

I want to preface this posting by saying that the information I am going to post is my understanding of the mitochondrial theory and how it may or may not relate to CVS and/or migraine headaches...It is my understanding and does not reflect the opinion of the CVSA.

Dr. Boles, as well as some other researchers, have theorized that CVS episodes may be triggered at the cellular level. Each cell in the human body contains mitochondria, which are responsible for creating energy for the cells. Sometimes, for a variety of reasons, the mitochondria do not function correctly (mitochondrial dysfunction), or as efficiently as they should, which can be a problem when the person encounters something that increases their need for energy. For example, allergies, exposure to temperature extremes, illness, menstrual cycle, etc. increase our need for energy; however, according to this theory, when our energy need exceeds our ability to create more energy a CVS episode can be triggered.

There have also been some studies that were recently published, both in the U.S. and in Europe, about migraine headaches and their possible relationship to mitochondrial dysfunction. The November issues of Prevention and Women's Day magazines have brief summaries of these studies.

In the above mentioned migraine studies, the researchers used coQ10 (a coenzyme) to treat migraine headaches, and both studies reported roughly similar results -- about a 50% reduction in the frequency and intensity of migraine headaches among study participants. There is another study that that was posted on the board by jjr770 that was one in which L-carnitine (an amino acid) was used to treat CVS patients. The researchers reported that there was an increase in the avg. amount of time between CVS episodes among study participants from a little more than once a month to a little more than once a year.

The migraine studies were done with just regular migraine patients -- didn't say that they screened anyone for mito problems -- they just say that current thought in migraine research is that migraines may be triggered by the energy imbalance...the way I look at it (and this is just my interpretation) is that two people can buy the same car and use the same gas, but one may burn fuel more efficiently than the other -- the one that is less efficient doesn't have anything wrong with it, it is just less efficient...While the theory would definately apply to people with diagnosed mito disorders, the theory seems to apply to simple mito inefficiency too. I have a past history of migraines, but I have never tested positive for a mitochondrial disorder.

CoQ10 & L-carnitine are the supplements that we have been discussing on the board for the past couple of months. The L-carnitine assists fatty acids to enter the mitochondria for fuel (energy) production, and the coQ10 aides in the energy creation and increases mitochondrial efficiency. If the mitochondrial theories are correct, these supplements may reduce symptoms and/or frequency of attacks by assisting your body to meet its energy needs. It is also important to note that it would still be important to try to avoid potential stressors that place an increased demand for energy on your body. Additionally, researchers, such as Dr. Boles, have discussed the importance of frequent snacking (using high complex carbohydrate snacks that are low in fat and protein) to help to maintain a steady energy level.

A number of us have been trying these supplements under the direction of our doctors, and the results thus far seem to be positive; however, I can only speak to my personal experience. I continue to take Elavil (which by itself did not control my CVS attacks), to follow the dietary recommendations, and to take the supplements daily. I normally cycle every 6-8 days; however, since I started the supplements a couple of months ago, I increase my supplement doses on days when I see signs of trouble brewing, and I have only had 2 very minor, mild, and short episodes since October 29th.

I hope this helps -- Amy

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My postings express my opinions and experiences and do not reflect those of the CVSA or any other organization.


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orsonhp

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Reply with quote  #2 

CoQ10 Information

CoQ10 is a coenzyme and is believed to be one of the most powerful antioxidants available. It is currently being studied and/or used for a number of conditions including, for example, neurological disorders (such as migraines and Parkinson’s Disease), heart conditions, and hypoglycemia. It is used by the mitochondria in cells to increase energy output. CoQ10 is available in a number of different forms. Here is the information that we have been discussing:

1. All of the resources that I have found agree that the liquid geltabs are much more absorbable than the regular tabs.

2. There is HUGE variance in the purity of CoQ10 and the sources from which it is derived...there are a couple of things to consider: Synthetic or Natural...and Source

a. Synthetic or Natural -- natural is better than synthetic and just because it says it is
from Japan doesn't necessarily mean that it isn't synthetic

b. Most synthetic forms of coQ10 are derived from tobacco (yuck!!!)

3. There are a number of liquids that CoQ10 can be suspended in to put in gel cap form. vitamin E is the most common of those liquids, and the number one source in the U.S. for vitamin E is soy – so even if the label doesn’t say soy, it can still have soy in it. The soy is not a problem unless a person is sensitive to it – I am sensitive to soy.

Here is the bottom line:

I found a few brands that are liquid gelcaps that are absolutely soy free...most of them did not disclose whether their coQ10 is natural or synthetic...

The CoQ10 that I decided to use is:

Brand: Healthy Origins coQ10, * mg gel tabs

-Their coQ10 is natural, comes from Japan, and all information about sources is disclosed
-Their geltabs have * mg so that they will maintain their potency over the course of their shelf-life
-They do not contain vit. E...instead their ingredients are as follows: Olive oil, gelatin, glycerine, purified water, natural beeswax
-No sugar, salt, yeast, wheat, gluten, dairy, soy, preservatives, etc.

Their website has information about their CoQ10 that http://www.healthyorigins.com/ you may find to be interesting. I will post another thread about Healthy Origins coQ10 discounts that they are offering to CVS patients for the month of March.

The Q-gel brand from Epic 4 Health is also supposed to be great and their CoQ10 comes from the same source as that of Healthy Origins.


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orsonhp

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Reply with quote  #3 

L-Carnitine

L-carnitine is an amino acid that helps fatty acids to pass into the mitochondria of cells to be converted into energy. The following is a summary of what we have been discussing.

1.         Carnitine comes in a number of forms:
a.         L-carnitine – this is the regular form of carnitine supplement and is the one that we have been talking about using
b.         Carnitor – is a prescription form of L-carnitine that a few people have been taking
c.         Acetyl L-carnitine – this form is not harmful, but it does not do as many things in the body as regular L-carnitine
d.         D-Carnitine – AVOID this form of carnitine – it can be toxic!

2.         The one that I have been using is made by Country Life – it has some They make a hypoallergenic L-carnitine that is free of: yeast, corn, wheat, soy, gluten, milk, salt, sugar, starch, preservatives or artificial color. Their website is: http://www.country-life.com and their products can be purchased in health and/or vitamin stores.


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ginny

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Reply with quote  #4 

In addition to the country life website, their L-Carnitine  is available at http://www.Swansonvitamin.com

 

You might also be able to buy this brand at a natural foods store.  This month I paid quite a bit less buying through Swanson. 

 

http://www.Epic4Health.com also sells L-Carnitne.

 

The two coQ10 brands Amy mentioned are what seem to be the best brands.  http://www.HealthyOrigins.com often has sales and has in the past extended their sale to those who have CVS.  Epic4Health told me they would  offer a discount if you state their products are being used for medicinal purposes.  They might ask for a doctors name or medical center name.

 

 


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ginny CVSA Moderator
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Kiaras

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Reply with quote  #5 
Where should I go to find information regarding dosage amounts, especially for children?
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ginny

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Reply with quote  #6 

Click on the link below.  This brings you to the archived Code "V" newsletters on the CVSA web page.  Be sure to talk to the doctor first. 

 

 

http://www.cvsaonline.org/CVSACodeVReprintCoQ10andL-Carnitine.htm


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ginny CVSA Moderator
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all3

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Reply with quote  #7 

If mitochondrial dysfunction is related to CVS, it stands to reason that other familial relations may have mito.dys. related symptoms.  My son who does not have CVS, runs out of energy, literally, if he doesn't eat every hour or so. He also is pretty uncoordinated in his movements. Anybody have a sibling/parent/child related to the person with CVS who may have mito symptoms and not CVS? 


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ginny

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Reply with quote  #8 

It would be more common to have other symptoms than to have CVS symptoms.  We do have at least one CVSA member who had a sibling diagnosed with a mito disease.


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ginny CVSA Moderator
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all3

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Reply with quote  #9 

how does one go about being tested for mitochondrial dysfunction or disease?  What would the benefits of doing so be? 


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drewsy

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Reply with quote  #10 
I had CVS as a child and it developed into allergies. I would try cutting out dairy, wheat, sugar, coke, soy, corn, potatoes and see if you feel better. I believe that CVS is caused by what we are eating. I've been taking probiotics as well and feel that it is making a difference. It's not something that you are going to feel better after a day. Try it for 3 months and see. I started juicing green veggies and added a lemon and apple and ginger. Its great! Hope this helps! I've not had a problem with the sugar from fruit (tomatoes are fruits!) but they are high in sugar so you may want to cut these out if your problem is severe. - Amy
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Amy Drews
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drewsy

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Reply with quote  #11 
oh yeah and NO HFCS (high fructose corn syrup!) 100% juice only
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cindypope

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Reply with quote  #12 
Hi guys,

Just a cost savings note for you all. I started using L-carnitine for my daughter Kate as soon as I read about some of the success stories but it was costing me a lot of money  ($60 per mo)to buy it at the health food store. I found out the prescription form was available and my daughters doctor agreed to prescribe it. Now I am only paying $10 for 3 months with my prescription plan.

I'm not sure if the prescription form is synthetic or natural.

Thanks


Cindy





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giz9

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Reply with quote  #13 
I just bought a bottle of some Spring Valley Co Enzyme Q-10 from THE WALLSMART for about $6 American.   I purchased ** mg gel caps and have tried ** up to ** mg doses, but no noticeable effects yet.   I also drink Monster for the Levo-Carnitine and B vitamins... or maybe I just like the caffeine.   Does anyone else get their L-Carnitine this way?

Anyway, my pills and caffeine haven't worked yet, so I think I'll go...

Gizmo


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ginny

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Reply with quote  #14 
HI Gizmo, There is synthetic CoQ10 and Natural CoQ10.  For both LCarnitine and CoQ10, it could make a difference in the brand and formulation of the supplements you are trying, some brands are pharmaceutical grade.  It if you try a purchase of a brand that has been used in the research you might find a difference. I am not sure that everyone who has tried pharm. brands has improved but back when we first began to try to keep track of results it seemed there was improvement.  With a medical condition the suppliers have been discounting, bring the price down.  Dosages quite often require tweaking and some of the doctors are doing blood levels on patients taking the supplements.


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ginny CVSA Moderator
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klconner

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Reply with quote  #15 

I get my Co Q 10 from Wal-Mart.  I used to get it through my pharmacist because of the whole "pharmacutical grade" thing.  The money made me switch, but honestly, I haven't noticed a bit of difference.  I get my L-Carnitine by prescription because insurance will pick up all but $7.  Either way, when I was in the hospital and didn't have access to either I did notice a big difference in my energy level.  About a week after I was taking them again they kicked in.  Now I always carry my own to the hospital and my dr. writes them into the orders.

(wait a minute, that could be a little confusing.  I take them every day, not  just during attacks)
I've never tried the Monster drinks. 
kate


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