Vitamin B-6

Thanks for the info. I was not aware of the coenzyme form of B-6. I've never seen it in the drug store or health food store. Where would I get it?

I have been trying to understand more about neurons and axons and synapses and neurotransmitters.......so I have been doing a lot of reading, in hopes of creating a new pathway of electrical charges for the nerves that control my vocal cords. New dendrites are formed with new experiences!! So what if I could teach and old dog new tricks?

The B vitamins are supposed to be a great source of brain support.

I don't know if you guys know much about royal jelly. The miracle food that honey bees feed the queen!? I know we are not insects but the stuff that is in royal jelly is amazing.

I have been experimenting by small amounts of fresh royal jelly. I feel a sense of calm and energy and alertness. I sleep better, and noticed slightly less spasming of the vocal cords. I get it at the health food store. it is very unstable stuff and needs to be refrigerated. This “bee milk” that honey bees feed their queen. I think it is wortha mention as brain sustaining substance.

I enjoyed learning some of the facts and would like to share them with you : Royal jelly is secreted from the Pharyngeal glands of young nurse bees. Royal jelly is the food given to all the female larvae for the first three days after hatching.After day 4 all females get honey and pollen, but the larvae that has been selected to become the queen continues to be fed royal jelly through her entire life. The queen lays 2000 eggs a day, twice her body weight. Other bees live about three months. The queen lives to four or five years,

Here is a partial list of what is in it? it is the world's richest natural sources of patothenic acid ( vit B5). It is very rich in B6, 1,2,3,12, and biotin, folic acid and inositol. It is a natural cource of acetylcholine, and has vitamins,A,C,D and E.many minerals , and 18 amino acids enzymes an dhormones. an 4% of royal jelly has defied laboratory analysis. It sounds like I am selling the stuff ......not really..I am just so intrigued by what all is in this miracle food. So I figured I would add it to my diet for a while as brain food and see if I get any results. Many russian centenarians, were bee keepers and all consumed honey and royal jelly!!

Gotta be cautious on some of this terminology. I'm concerned with the terminology about "nerves regenerating themselves" lest it be confused with the process that goes on in re-innervation surgery. Two different things. As yet, I wouldn't know how to describe them to keep those processes separate but I know they are and I hope someone can add to this discussion.

My understanding, as a layperson, is that both Botox and MYOBLOC (botulinum toxin - types A and B) temporarily inhibit the release of acetylcholine (ACh) at the neuro-muscular connection. It's localized (at the injection site) and it causes the affected laryngeal muscle(s) to be in a temporary state of paralysis. It does not go into the full system (which some people think it does). So, the effect of the shot wears off....just as alot of shots and serums wear off over time in various parts of our bodies. Ala, tetanus shots, which have to be repeated periodically. They wear off also and I have no idea what part of the body would be re-generating in response to a tetanus shot.

I can certainly understand how nerves might "fight back" over the effect of a blocker. I'm wondering though...how much of it is "nerves regenerating" or the localized-serum-effect fading? Just curious and trying to learn.

Thanks. This is all really good info to share so we can all learn but I'm still fairly unclear on this terminology-thing. Maybe it's just me. Too much "the analyst." Guess I have to go do some more research.

Are they really synonomous? The processes sound very different to me. I'm curious because the process of nerves "regenerating" per Linda's post (with the effect of a Botox/Myoboc shot fading) versus what you and many others have been through with your laryngeal nerves "re-innervating" (post-surgery) seems quite different.

Also, to toss this into the mix, someone told me many moons ago that there really wasn't that much difference between the laryngeal surgery I had 5 years ago and the more recent surgery that you and others have had. Actually, there is a huge difference (based on my research and my lay-study of laryngeal anatomy). Anyway...I figure it's good for all of us to keep discussing this stuff. Not that we will ever find "THE answer." On this thread, if I could figure out what "nerve regeneration" after botulinum toxin injections means, I'd be happy.

I just reread your post and find it very interesting. I also read the Boston Life Sciences article. It's exciting to know that maybe, just maybe, Inosine could help SDers regenerate nerves, whether they've been operated on or not. Today I wrote to Dr. Blumin/Dr. Berke and asked them to read the article and let me know if I could start taking the Inosine tablets. I eagerly await their reply.

I find your theory of the two kinds of SD quite fascinating. Do you really think there is an SD gene? Are there any studies linking family members with SD, that you know of? Perhaps you mean genetic in a more general term, meaning that we may have a propensity for nerve damage if we do this, and this, and this to our bodies. The latter makes more sense to me. My theory is that in a big way, WE contribute to our own spasmodic dysphonia.

Without going into all the details now, which are in my earlier postings, my years of stressful living began the demise of my voice. A five-minute yelling match was the "inciting incident" that caused the incorrect exchange of info of my brain synapses that you refer to. Shortly after that, SD reared its ugly head.

I hadn't heard that SD is called, "Teachers, preachers and coaches disease." I am a former singer, and I have met and learned about many people with SD whose voices were used prominently in their careers. Dr. Morton Cooper agrees with you that the overuse and incorrect use of the voice wrecks the voice and can lead to SD. I mention him because I went to Mort Cooper six months after my SD surfaced and through his DVR exercise program, I did regain my natural voice. It was like a miracle at the time. But it didn't hold, and I was unable to keep up the exercise regimen to retain my voice. I know of several people who have gotten their voices back through Dr. Cooper's work. Brian Foxley was working to regain his voice at the same time I was with Dr. Cooper. He had SD and now he speaks great.

Dr. Cooper method did not work longterm for me, but there are many whom he has helped. If you're interested in learning more about him, go to his website at www.voice-doctor.com. Let me know if you find out anything else about Inosine. Take care.
-Joan

I was interested that you got your vice back with Dr. Cooper's exercises, but it didn't hold.

I too went to Dr. Cooper for a solid week of intensive voive therapy. I never got my voice back entirely, but it was greatly improved. His hope and mine was that continued work on the exercises would continue to improve it, but it declined - even though I worked hard. Why do you think this is? Is it my failure to diligently keep after the exercise or is his approach limited in permanence?

Thank you for sharing your expertise. I had heard through the years that Brewer's yeast probably would not disturb my chronic candida, but I've always shied away from anything with the word "yeast" in it. Now I won't. On the subject of inosine. My doctor has given me permission to take it, although he's unfamiliar with it. He read the article and questions the efficacy of inosine for humans, since the findings are based on infusing inosine into the central nervous systems of lower vertebrate animals. My doctor is not against his patients taking supplements, and said he doesn't think it would cause any harm.

I read your post. Yes, I do believe there are two groups of people here on this BB with the same symptoms, but different origins. I am not a
doctor and can’t prove my theory. It is just what I believe. I don’t know about a specific SD gene! But I know that there are people who have
genetic propensity who have lots of relative with neurological disorders. And then there are those people who have had other causes, like
emotional trauma, chronic stress, massive blow to self esteem, or physiological trauma like upper respiratory problems. So, somehow some of
us
people end up with a disorder like SD. Botox and surgery are obviously working for some people be a treatment of choice.

I am not saying I will never choose on of those options.A time may come that I may lose the motivation of the spenidng so much time to just
be
able to talk. I am just hoping to find more natural and less invasive solutions at this point in my journey.

So in short I think some us have contributed to the development of our SD and by that I don’t mean to blame myself. Or, if my natural
remedies
don’t pay off , I am not going to say that I just didn’t have enough will power or mind power or any silly thing like that.

I believe that our body has set up an incorrect pattern and the exchange of brain chemicals are faulty. So I think chemical imbalance can be
changed.

I think many of us live in a constant state of fear, and panic. Our fight and flight chemicals are in full time and all wheel drive. That is why the
tightness in the chest, the diaphragm, the neck , the shoulder.......all that is from this heightened state of anxiety that we have gotten used
to
and think of it as normal.

We may be able to set up new electro chemical patterns which can take over the old route and become the primary pathway. Like building a
new
highway, and the more we use the new one, the old one will get covered up with grasses and bushes and will disappear in time.

I know this because it happens for me in conscious, focused, meditative states of mind.

studies have shown that new physical and mental experiences develop actual new dendrites. Our brain is a powerful tool and emotions impact
our
chemical levels in our bodies. We think of a lemon, our mouth waters. We get into a near car accident, our bodies rush hundreds of chemicals
into our bloodstream in seconds and our breath gets locked up in our chest. That is how my body feels when I talk sometimes. My chest feels
locked up. Our minds and bodies are intricately connected.

We can produce changes, by any method that works for us individually. Some take supplements, some pray, some meditate, some run, some

believe in the power within, and some use bio feed back. But once we can get our old calm and intact self back, the voice will be restored.

This what I think anyway may be happening to me. I have become very intimate with how my voice functions and my comments are based on
only personal experience and observation. and I am guessing there may be a few people like me out there. So anyway, Iam trying to grow
new
nerves, heal the frayed ones and develop new circuits by helping my body chemistery through repatterning and use of supplements and other
natural means. Thanks, for asking

I am also curious about Marks's experience with Cooper. I wonder why the correction does not hold? Has anyone had a long term benefit from
his techniques?

Goly

I just read your very eloquent post and feel exactly the same way you do. I am in the process of trying to let go and believe that my voice will return, once I let go. I have one question for you. What natural supplements are you currently taking to help you with SD and are you finding them effective.

Thanks,

Here is what I am doing :

B50 complex
Zinc 30
Flax oil (fresh squeezed)
“Brain sustain” from iNutritionals
8 to 10 glasses of water daily
Lots of stretching / Yoga
Doing voice exercises 3 times a week with Roger Love’s CD
Occasional Accupunture
Occasional massage for fun and relaxation

I frequently (about every fifteen minutes) self monitor my body position, drop my jaw, let go of my tight stomach and take a deep breath.

I am also seeing a special kind of chiropractor/massage therapist who helps me with releasing my tension from my diaphragm which allows me to breathe deeper.He does myofacial release and cranio-sacral work.

I know that all this takes time, but time is all I have and the moment is all there is. If I am not breathing properly, I can’t spealk well and if I can’t learn to handle my stress, nothing else will work effectively for me. So, I have suspended many of my teaching/ lectruing engagements and workshops. I am sure when I feel whole again I will be able to pick them back up. Life is not a race for me.

In personal and professional situations, I try to speak with conviction and purpose. when my voice cracks and strangles, I don’t look away. I smile, breathe, compose myself and try it again.

In social situations, I don’t speak louder that it is comfortable for me. I maintain eye contact and call people by their name before I start to speak, that keeps them tuned in. If they don’t want to listen to what I have to say, I don’t force myself into a conversation. My feeling is that if I have to force it, and they don’t care, it’s wasted breath on them.

On the spiritual and emotional realm, my position holds as in my earlier post.

I believe the Re-patterning will happen. I continue to believe that the world is generally a loving, accepting, and safe place to be. I believe feeling SAFE is the key to healing from this condition.
I continue to practice to remain calm, to let go, and to trust that my life will be good and positive.

We may get caught in pockets of unsafe and aggressive interactions, I call it the sandpaper world! . My remedy is learning to deal more effectively with those people and conditions and not personalize their aggression.

I find that my work that I am doing is effective and My voice is generally much better. It still falters but my belief is strong and will keep me going. Take Care.

I deeply admire your courage, honesty, positivism, hard work and determination in dealing with this condition.

SD is really something threatening, demoralizing, and misunderstood by others and all of us who have had to struggle with it know it.

Cinthia said it so well, the fact that in spite of it, we keep striving to be heard and do our jobs is amazing and we all should be proud of ourselves.

Like many of you already know, I don't think SD is neurological, at least in many of our cases. I also don't think it is all in our heads or it's psychological. I do believe there's a physical-functional explanation.

The last word about the SD cause hasn't been said, yet. More research needs to be done and I hope I can make at least a small contribution to it.

"True SD" IS neurological and I think we are all trying to contribute to the *Body-of-Work* on SD, so we have that in common. In many cases we patients are the ones who are educating the professionals. Especially those of us who are very outspoken on SD and speak out about it in public at every opportunity.

I don't know you or your case but I do know Goly in person; and, I can tell you, our two cases are different from each other. But, isn't that the truth with all SD cases? We are all unique. She's doing what she needs to do right now, for herself, to work on vocal and health issues, similar to what I did prior to the treatment that finally restored my ability to talk. I admire Goly for the persistent work she is doing to address her own situation.

My case was SO neurological that, the day after my left laryngeal nerve was paralyzed over 5 years ago, I could talk better than I had in many, many years. I never had to un-learn compensatory habits or teach myself to talk again. I talked instantly. (Old RLN-surgery...not Berke's). After not being able to work for many years, I successfully interviewed for a middle-management corporate position 12 days after surgery. With the bandages still on my neck. SD not neurological?

It was evident at the Michigan SD Symposium in March (as it has been at other dystonia/movement disorder symposiums I've attended for several years) that dystonia is such a perplexing condition that there is NO 100% effective, *cook-book* diagnosis or treatment for every patient. We are all a challenge to our doctors, our SLP's, our alternative practitioners, our SD-community, our non-SD community; and, most of all, to ourselves. After all, we're dealing with the brain. Not exactly a *simple* system which provides easy answers.

I agree with you that some vocal cases which "sound like" SD are not true-SD. We all struggle with this concept (ie: *why is it so hard to diagnose accurately?*) and it's important to share information about all cases so that we patients and the docs become more educated and able to fully and more-accurately diagnose. I personally think it is more important to encourage this (separating *true-SD* from other dysphonias which mimic it) than to say SD is not neurological when much evidence shows that it is, when diagnosed properly. Cases that are not really SD should be termed something else. Possibly, within the next few years, we will get better about that terminology, as well as the varying dianoses.

Hope to see you at a symposium someday. There's alot of good, progressive work being done at those events which contribute to the *SD-Body-of-Work.*

Adelle Davis' Fortified Milk or Pep Up

2 egg yolks or whole eggs
1 Tablespoon each Lecithin and mixed vegetable oils
*1 1/2 teaspoons calcium lactate or calcium gluconate
*1/2 teaspoon magnesium oxide
1/4 cup yogurt or acidophilus culture
1 teaspoon granular kelp (optional)

Beat thoroughly and add:

1 to 2 cups whole or skim milk
1/4 to 1/2 cup brewers yeast fortified with calcium
1/4 to 1/2 cup non-instant powdered milk
1/4 cup soy flour or powder
1/4 cup wheat germ (optional)
Nutmeg or 1 teaspoon pure vanilla
**1/2 cup frozen undiluted orange juice

Pour this into a container and add the remainder of the quart of milk. Cover and keep refrigerated. Stir each time before use.

* If you prefer to take calcium and magnesium tablets, take them at the same time you drink the pep up. The mixture lasts longer without Ca and Mg.

**I much prefer frozen lemonade over orange juice, with vanilla instead of nutmeg. The lemonade cuts the yeast taste more than orange juice.

USAGE:
Start with 1/4 cup pep up with each meal. When your digestion gets used to it, increase it to 1/2 cup at each meal. Ill persons should continue to increase the intake until they are drinking one quart a day in 6 servings. This is a complete nutritional drink and can be used in place of food, or with carrots and vegetables if the user wants to reduce the weight. If the user wants additional calories, a banana can be added to the drink, and the amount of oil increased.

For those of you who try it, please let us know how it works.

I started using this recipe from Adelle Davis in 1972 when I was pregnant with my first son. I've used it regularly over the last nearly 30 years and I'm sure it has benefitted my health greatly. Didn't help my voice though.

Also, after I wrote this, I went back and checked the version of the recipe I had been using (from "Let's Have Healthy Children" published in 1972) and the one you printed is quite different. Wondering where it came from. Yours looks like an adaptation that might be newer (?) as it contains additional ingredients but Adelle Davis died of cancer a few years after that book printing came out so I would be surprised if she modified it so thoroughly in her last years. Also, I see you put the usage warning at the bottom; but, also, in my book she makes it very clear that the first batch of the recipe should start with 1 tablespoon of brewer's yeast, gradually increasing it to 1/2 cup (to avoid some very powerful digestive results).

--Lynne

I have tried B-6 in the past, but not for SD. I was on a small dose and I don't remember how well it worked, but it is something our bodies need in moderate doses.

I was researching different neurological spasmodic conditions, and found this research on torrette syndrome. Although we don't have that condition I found some of the study to have relevant information for us.So many of symptoms seem to suggest a chemical imbalance!

Here is an oveview, if interested you can see the whole research here: http://hometown.aol.com/bonniegr/page/index.htm

Overview of Magnesium Deficiency
Clinical symptomology of magnesium deficiency is dominated by neuromuscular hyperexcitability (Rayssiguier, 1990; Durlach, 1997) exhibiting
latent tetany (Durlach, 1997) and spasmophilia (muscle cramps and spasms) (Galland, 1991). Hyperarousal (Galland, 1991) with sensitivity to
noise, bodily contact, and excitement (Langley, 1991; Goto, 1993) in the precipitation of neuromuscular hyperexcitability has been described in
magnesium deficiency. Choreiform and athetoid movements can be produced by magnesium deficiency (Holvey,1972). Some tics may be forms of
atypical latent tetany (Ploceniak, 1990).

Estrogen enhances magnesium utilization and uptake by soft tissues and bone (Seelig, 1993), which could account for the majority of men
exhibiting TS symptoms.

A chronic tissue magnesium deficit is found in HLA B35 individuals (Zeana, 1988; Henrotte, 1990 ; Durlach, 1997). A few clinical disorders that can
be associated with magnesium deficiency are: migraine (Thomas, 1994), bruxism (Lehvila, 1974; Ploceniak, 1990), restless leg syndrome
(Popoviciu, 1993; Hornyak, 1998), asthma (Fantidis, 1995), seizures (Galland, 1991; Goto, 1993), hearing loss, TIA (Galland, 1991), heart
arrythmnia (Burtis, 1994), and mitral valve prolapse (MVP) (associated with HLA B35) (Rybar, 1989).

The environmental factors involved in the development of TS symptoms could be those that exacerbate a magnesium deficit. Stress and stimulant
use cause a magnesium deficit (Zeana, 1988). Other causes of magnesium deficiency are conditions that either cause a decrease in intake or an
increase in excretion of magnesium and include: malabsorption (Burtis, 1994), alchoholism (Burtis, 1994), drugs; such as diuretics,
aminoglycosides, cisplatin, cyclosporin, amphotericin B, cardiac glycosides, and pentamidine (Burtis, 1994), chronic parenteral fluid therapy
(Burtis, 1994), certain renal diseases (Burtis, 1994), and corticosteroid use (Zeana, 1988).

During the first week of magnesium deficiency, Substance P and CGRP are increased. The 2nd week, histamine is increased, along with PGE2,
and TBAR molecules. The 3rd week, cytokines IL-1, IL-6, TNF alpha are increased (Weglicki & Mak, 1994). The cytokines, IL-2, 4, 5, 10, 12, 13, and
IFN gamma are also increased in magnesium deficiency (Weglicki, 1996).

Magnesium deficiency has been found in children with ADHD (Kozielec, 1997; Starobrat-Hermelin, 1997); Starobrat-Hermelin, 1998).

Did you have a severe case of SD? It is wonderful that the B-6 worked for you and evidently for some others. I will let you know in a couple of weeks how I have progressed. Darn, I should have recorded my voice!!!! Maybe I will start that today. My husband suggested it and I completely forgot to do it. Take care