B-6 and Other Vitamins

In the paper this morning was an article on Vitamin B-6. It was a caution really. B-6 is a group of closely related substances, pyridoxine, pyridoxal and pyridoxamine. B-6 assists in the production of protein. Deficiencies lead to skin problems, anemia, confusion and seizures. Large doses of B-6 have been proposed as treatment for carpal tunnel syndrome and premenstrual syndrome. Large doses taken for long periods can cause serious nerve damage and unsteadiness when walking. The suggested intake for men and women between the ages of 19 and 50 is 1.3 mg a day. For men older than 51, dosage 1.7 mg a day and women 51 and older, dosage of 1.5 mg a day.

It is my understanding that all of us with dystonia (any type) produce an over abundance of the chemical called acetylcholine. This applies to both genetic forms of dystonia (any type) or idiopathic (unknown cause) dystonia (any type). Acetylcholine is a substance in the body that allows messages to travel from one nerve to another. For example, when a person who decides to pick up a pen can act on the thought only when the hand receives the message from the brain. This process in normal persons occurs in a fraction of a second. On a person with dystonia, we have too much acetylcholine (nerve transmitter chemical from the nerve to the muscle), so "that" particular muscle spasms. We're like a car battery that overcharges all of the time.

Another area of research that I've delved into has been our "senses". Speech is not one of them. We "learn" to speak. I think in many cases, we SD folks develop bad habits. I did! We're trying so hard to get through these spasms and tremors to communicate. The Botox injections paralyze or weaken the muscle in spasm, but only for a short period of time. The Botox wears off, it doesn't stay in your body. Then you have to repeat the injection. It's a repeat, repeat, repeat cycle.

When my spasmodic torticollis and arm dystonia started almost 2 years ago, I did some extensive research on the benefits of Vitamin B-6 and began taking 100 mg. a day. Within an 8 week period, I stopped taking Klonopin. For me, this was really a biggie milestone! And, let me say right here, this was done under my doctor's supervision!! Too much Vitamin B-6 can also cause neuropathy! I continue to be monitored on getting too much B-6 in my system by my doctor! I would strongly suggest that anyone embarking on the vitamin or herbal route, consult with their physician and make sure that the physician knows what you are on. Any of these vitamins or herbal suppliments will affect your body. If you happen to have some sort of an emergency and wind up in the hospital in an unconscious state, whatever you have been taking could very well affect the treatment you receive in an adverse way!

It's been over two years since my last Botox injection for my SD. I rely totally on speech/voice/breathing techniques to make me understandable. I have severe ADductor SD with tremors thrown in. I swear by the exercises that are up on Jessica Harwick's website http://hometown.aol.com/jharwick/page/index.htm It takes practice, practice, practice and then more practice to get to a point where you can speak without straining to get out every word.

Do I now have a "normal" voice. NO! Not by long shot. There are many words that stop me dead in my tracks. I just can't manage to get them out. Anything with the start of "wa", or "br", of "ah" and many others, are an impossibility for me. I'm still working on changing my vocabulary! I know I'll never have a "normal" voice. I've reached the point of acceptance on this - it's been 11 years of SD now. My main focus is to be understood when I speak. I also use "sensory tricks" when speaking. Sometimes I pace if I'm talking on the phone. Or I'll pinch my index finger to my thumb and press - hard. Some people have been known to wear a rubber band on their wrist and pop it. These "sensory tricks" take you mind off speaking. It's totally bazaar but in many cases of the focal dystonias, it does work.

I think its wonderful that we do so much research and share information with each other. This not only helps us, but also helps our doctors in our treatment.

So, I'm off my soap box. You all continue to research and share - but please keep in mind that "too much of a good thing" on vitamins and herbal suppliments can cause harm.

Anne

Brain Link contains 3000 mg (per 6 scoops) of the memory amino acid, Glutamine. Research has established glutamine is effective when used by adults and children to help with memory and concentration or addictive behavior.

GABA is the anxiety amino acid that is needed on a daily basis.
Glycine, an inhibitory neurotransmitter, helps those with constant sugar cravings as well as helping to regulate stress levels.

*** End of specs***
I think GABA was a key ingredient for me. The first time I took it I felt much more optimistic and less anxious. I took one whole can (3 weeks) and my good mood held. Then I ran out and the health food store had to order more. The 4th day after I quit taking it I started craving chocolate. On the 7th day my mood plunged and my anxiety level increased to what it was before. Note that GABA and glycine are neurotransmitter inhibitors.
Another piece of the puzzle.

I also found a reference that GABA is given to autistic kids.
***

4. Neurotransmitter Groups

A. Acetylcholine
Acetylcholine Esterase
Nicotinic Receptors
Muscarinic Receptors

B. Monoamines
L-Dopa
Dopamine
Norepinehrine
Epinephrine
Alpha/Beta Receptors
Serotonin
Histamine

C. Amino Acids
Glycine
Glutamate
Aspartate
Gamma amino butryric acid GABA

D. Gases
NO (nitrous oxide)
CO (carbon monoxide)

E. Peptides AKA Neuropeptides
Endophins
Encephlins
VIP
Insulin
ADH

F. Other
Nucleotides

Not sure that I agree that serotonin is a neurotransmitter. According to what I found, its a substance found naturally in the brain and intestines. Serotonin is released from certain cells when the blood vessel walls are damaged. It acts as a strong vessel-narrowing substance.

On the gamma-aminobutyric acid (GABA), I found; an amino acid that carries nerve messages. It is found in the brain, heart, lungs and kidneys.

I didn't find dopamine, but did find dopa. A chemical substance that leads to the production of epinephrine and norepinephrine. The epinephrine is a drug that stimulates the adrenal glands and narrows the blood vessels.. The norephinephrine is a hormone that increases blood pressure by blood vellel narrowing. Thought it weird that I couldn't find dopamine since I know its one of the brain chemicals. May have to update my dictionary - but didn't think that was a "new" term!

Since I was digging around looking up stuff I thought I'd just throw in a couple of other items that I found interesting. And, having said that, lets remember that dystonia (all types) affect the voluntary muscles of the body.

Motor nerves carry impulses or commands, from the central nervous system to the muscles and glands. The brain contains more than 10 billion nerve cells. How's that for a mind blowing thought! And if I'm not mistaken, this is the area of the brain where our dystonia problem is, the central nervous system. I thought it was in the basil ganglia, but after reading some of these descriptions I'm not totally sure of that now.

There are several drugs that are given to block these nerve impulses. The WE MOVE site has added more information on those. That's at http://www.wemove.org/dys_mota.html One problem that all of these drugs have are "not too swift to experience" side effects. To my knowledge, none of these drugs that block or reduce communication between nerve cells and muscles have been that successful for SD patients. We have several articles up on our Dystonia On-Line Support Group in the Library section that references that. www.dystonia-support.org

I'm wondering if maybe its due to the vocal cords having so many muscles in them. I've also wondered if another reason was that "maybe" there is only one muscle that is in spasm on the vocal cords? I know that for my ADductor SD, they gave the Botox injections into just one muscle. Think each cord has 5 muscles. Be interesting to know which muscle was being injected with the Botox and if it was a different one on different people???? Have to remember to ask a doctor that question. LOL

And at the moment, that's all I know.

Anne