My “rls” has gone so far beyond “rls” that I don’t even call it that any more. When it first started, about seven years ago, it had the characteristics of restless legs syndrome. At that time, I got uncomfortable sensations in my legs, and they would jerk uncontrollably while I was asleep, often waking me up. I could alleviate the symptoms entirely within about 30 minutes by taking three Slow Fe iron pills.

But as time went on, that started to look like a walk in the park. I developed a condition in which my entire body would jerk on a four-second cycle, 24 hours a day. Along with this condition was a mental/emotional state that can only be described as frustration taken to its furthest extent: I figure when you see the little kids with autism wearing helmets so they won’t hurt themselves beating their heads against the floor, this must be what they are feeling to make them act this way. I also developed an intense paranoia and suspicion of everyone around me. Only because I am a relatively sane adult, was I able to control my behavior enough to not lose my job.

I had to go on medication. I tried different things; one doctor put me on klonopin, and in short order I noticed that I had to keep increasing the dose as it stopped working, and that I appeared to be becoming addicted to it. The last straw was when my heart started making very funny beat patterns and I ended up in the emergency room. I went off the klonopin, my heart started behaving normally, and the symptoms returned. Finally I ended up on gabapentin; but I had to take 1200 mg to get any sleep at all, and it turned me into a complete zombie. My short term memory disappeared; I couldn’t keep track of what I was doing. At least I was not feeling as insane as before, and I was getting some sleep at night.

During all this, I was trying to find a solution other than drugs and more drugs; allopathic medicine was clearly not working in my case. I was getting worse, the only thing offered me was drugs, and I had had enough. I started down the path of alternative medicine.

On this path, I used my powers of observation to take note of things that usually wouldn’t be considered. I found that my condition was aggravated by certain foods; in the end, I elminated all animal protein, all gluten, all nightshade vegetables, and some other forms of vegetable protein, because all of these were clear aggravators of my condition. I was able to lower my gabapentin to 600 mg. Along with this I was taking 1500mg of tryptophan. All at bedtime, because otherwise there was zero sleep that occurred. Zero. Lately I decided that the tryptophan was too expensive to continue (the gabapentin is free through my employer-sponsored clinic) and so I dropped it and raised the gabapentin to 900 mg. I am still mentally somewhat of a zombie, with short term memory difficulties. Despite the fact that the medical “officialdom” says that at this dose it cannot be affecting my memory, they are wrong. I react to drugs about like a twelve-year old would, and it IS affecting my memory.

I also chelated out off-the-scale amounts of lead and cadmium, and high levels of mercury, all of them now in the low range of the scale (heavy metal urine test with chelator challenge, Great Smokies Lab.) My condition did not change.

So….that is where the chemical approach reached its logical end. I decided to try what I’ll call the physics approach. That is, instead of trying to find a chemical solution to the problem, either by adding or removing various types of molecules, I’ll work with the more subtle (to Americans) physical systems in the body. I am not adverse to “extremely alternative” approaches, especially since the traditional approaches have netted me nothing. I had a couple of psychic types tell me, with no front-loading from me, that my pituitary was not working correctly. Then my MD told me that based on my thyroid tests, my pituitary was not sending out the TSH it should be. And someone else told me that I had a “disconnect” between my brain and the rest of my body, and someone else said that it was an upper-lower brain problem instead of a right-left brain problem. Ok…that was enough input on more or less the same thing to cause me to take action.

I had a cranio-sacral session. If you have not had one of these, you might think nothing is happening and you are paying a lot of money to just lie there. But….a good c-s therapist (it is a subset of massage, but does not feel or look like massage other than the fact that someone’s hands are on you) senses the flow of spinal fluid and various other rhythms in the body….that probably is not really accurate and you should google it if you want a better explanation. Anyhow, during this very quiet session I almost fell asleep three separate times; that is, I became aware I was dreaming. Now….for someone who cannot even approach sleep without having the full-body jerks set in (without drugs) this was….eh, let’s call it “unusual.” Unusual!?!?! Let’s call it “miraculous,” ok? She told me that….get this….my head was not communicating with my body like it should; that even though my perception was of miraculous relaxation, her perception was that I was almost totally blocked. So that has got me wondering, well, if I continue with this person who was able to almost put me to sleep just by putting her hands on my head on a few places….what could happen over time?

So this is where I am headed next. This was last Friday; all weekend I felt so wonderfully relaxed, outside of the usual range of how I feel. If this condition is an “end point” of a condition that has been developing over my six decades of life, and has only recently reached a point of needing medication to control….well, it could take some time to correct. I never slept well, even as a baby. Had insomnia as a kid; always was a picky eater. Etc etc etc….

I’ll report back in due time as to how this all turns out. I don’t expect to fix this condition with a “silver bullet” and this is not the only route I am following. I have yet another new NMD (they all give up in time) and he did site-specific EEGs that showed, in his words, that “your brain is not your friend.” I had a range of frequencies that (of course) did not fit any pattern he had ever seen. My beta waves were too high and my theta waves were too low. I did not appear to have the normal awake brain wave pattern. In addition there were frequent double-peak waves that he called “virals” which are supposed to be due to high fever at some time in your life. Well…..I had a fever of 108 when I was quite young. So there is a lot of history here, and a condition that appears to have been around for a very long time.

Stay tuned.

EBH

There is a new yahoo list for people with embouchure dystonia (usually brass players, but can be any wind instrument.) It is a support group with information from people who are having some success in overcoming the condition, but it does not claim to have “the answer.”

Search yahoo groups on embouchure dystonia and you will come up with it.

EBH

I was alone with myself in the shower this morning (maybe that’s why people sing in the shower….one of the few places where we can be alone with ourselves) and I was musing on the death thing. Again; or maybe that’s “still.”

I was reared Catholic, in the old blood-and-guts Latin modality. Went to parochial school, with Draconian Franciscan nuns in attendance. Not their fault, the Draconian-ness; they had no choice really, stuck in a mode where women simply took orders from men, those men being in direct contact with God and having the last word in all of it. In retrospect I feel sorry for them, trying their best against overwhelming odds. My first grade class had 60 students and one Sister Anthony. I heard she had a nervous breakdown a few years later; not surprising.

The Christianity I learned from the nuns had to do with stories of how the Communists would cut out the tongues of children who dared speak of Jesus; would puncture their eardrums with chopsticks if they dared listen about Jesus. There was a lot about martyrdom and how that was the best you could aspire to. Becoming a Saint was of course the very, very highest, but martyrdom was the most direct route to sainthood. I knew I could never be so perfect, as all of us, and thus the struggle to be perfect enough to avoid burning forever in Hell.

The Catholic focus was on the Crucifixion, all the blood and cruelty and the dieing for us; not about the Resurrection, which should have been the message. No wonder that so many people of that era describe themselves as Recovering Catholics. I’m sure the Church has changed somewhat, not that I’m there to hear about it. Sometime in high school I rejected it completely, baby and bathwater combined. And so I rolled along until The Great Cancer Scare in my mid-forties, and the quest to find out about death ensued.

Now we’re back to the shower this morning. I realized that despite the last fifteen years of reading, seeking, meditating, taking workshops to meet my Higher Self and my Guides and my Spirit Helpers and whatnot, I have not really budged my core belief decided upon in high school, that when you die, you’re dead. Kaput; gone, pfft, lights out. You see, during my innocent years in grade school, while I was still swallowing the church line, I believed; I tried; I talked to Jesus; I asked for forgiveness; I begged for some clue. But I got…nothing; not even in a dream, no message from Jesus that He actually did love me as I had been taught. So in high school I decided I had been deceived and none of it was true, based on evidence.

What is there if not evidence? Everything in your core beliefs comes from the decisions of what evidence to believe. The Materialists, even if they were to have the World’s Most Outstanding OBE, would likely still decide that the experience was merely interesting electrical activity in the brain. The people who are Saved (well, the ones who aren’t afraid of death, and they are rare) have decided to believe what they read in the Bible as sufficient evidence for them.

And I….well, I thought I believed in an Afterlife, but based on this morning’s shower it appears that I don’t, really. And I don’t know that there is anything that could budge that belief if fifteen years of trying has not succeeded. I’ve reached a point where I find it amusing when I express doubts to my believer friends, because of the entirely predictable reaction. It’s along the lines of “just relax and you’ll get some results” or “do this meditation exercise and you’ll get results” or whatever. Well, you know, I’ve HAD results. I just don’t believe them, despite my best efforts.

Now that I’ve figured out how to post pictures, there will be more of them! This is a picture I took a couple years ago, with my then-new digital camera, of the desert about a half hour from where I live. There is snow on the mountains, and it reminds me of how stunningly beautiful the desert can be.

This is Squirrley, who despite the calm look fits her name very well.

This is Pepper, love of my life.

RLS Update: 8-13-08 My symptoms were escalating again a few weeks ago, and I had taken note that almonds were tasting “better and better” to me. In the past, I have found that when I have a particular liking for a food, chances are 100% that this is an addictive allergy (google it) and I need to stop eating it. So…regretfully I stopped eating almonds, and my symptoms dropped back to their former level. I suspect that I have this brain-allergic reaction to all protein, and that short of giving up all protein I’m stuck with the RLS symptoms until I figure something else out. If you are someone who, like me, develops allergies to anything you are in contact with for any length of time, you’ll need to develop some sort of rotation diet in order to be able to eat at all.

Also recently I decided to do a gluten test; I do “tests” on a regular if not frequent basis, to make sure that what I think is going on is in fact going on. After eating gluten for a week or two, I noticed that I was in a constant state of itching, scratching about everywhere all the time. Just as if I were allergic to my laundry detergent (which has happened in the past.) However, the usual places where I’d expect the most reaction (like where I put pressure when sitting) were not any worse than the middle of my back, and I decided that it wasn’t laundry detergent. So…I stopped the gluten again, and in three days the itching was gone. There is a little-known skin condition that sometimes goes with celiac sprue, labeled, as is celiac-sprue, as an automimmue disorder, and that appears to have been what was going on. In all that time I had no intestinal reaction whatsoever.)

A friend of mine, who also abstains from gluten, has the symptom of mental fogginess on eating gluten. I don’t think she has any other discernable reaction, but this one is profound for her. Her reaction also appears to be a brain allergy.

It’s always interesting to see what goes on in my Garden. (Changes occur in the Garden that either reflect or predict changes in your physical life.)

Last night I was once again having trouble going to sleep, and I went to my Garden to have a look. My Garden Guardian has changed form….now that the previous one is all set up in the tepee, clearly waiting for me to tune in enough to receive instruction, I have a new participant: a Knight in armor on a well-decked-out horse, just like the medieval ones. My Garden is very well guarded, indeed.

EBH

Last night I had a long dream about one of my friends who moved to California. Before we even met in person, I had had a vivid dream of this half of the partnership, and there was no doubt it was him because when I met him, I had already seen him in the dream state clearly enough to recognize him in person. Anyone who thinks there is no precognition simply has yet to learn that it exists.

In a previous post I lamented at the loss of my friends, also from a dream. In my dream last night, we had gone to San Franciso together, but we got separated. I went and did everything I wanted to do, noting the absence of my friends but not being terribly upset about it….just went on with my stuff. There was a continual “we missed each other somehow, where are they?” and some interaction with J., but the essence of the dream was that we got separated and I was doing ok by myself.

So that shows a mental resolution and acceptance on my part, of the way things have gone.

EBH

Progress is so slow; it appears to go in millimeters but I have to accept that this is my rate given where I am.

Work has been a tremendous burden the last couple of months, with a huge project not working and having to be started over numerous times because of flaws that I found in it. Sort of like doing a dissertation….if you get part of the theory wrong, you have to start over and do all the work again with the modification to the theory. So I have not been doing any drumming and have not had even many insightful dreams; all has been work, even weekends, because of deadline pressure.

But two nights ago as I was again trying to shut up my brain enough so that I could sleep, it occurred to me that I should drum. So at 11 PM or whatever it was I got my drum and sat crosslegged on the bed in the dark. As I started to drum and went immediately to my Garden, a wave of peace flooded over me. It was such a relief to be there! I perused my garden, noted that some flowers that had been there were no longer blooming but were just tall green plants, sort of like irises when they are not flowering. Not bad, not wonderful. Then I saw my Garden Guardian, a native American whose tribe I don’t know (yet.) Then I thought of making some kind of dwelling place to sleep in, and a teepee appeared; incongruous, because the location of my Garden is sort of northwest coast USA…and there were no teepees there. But there it was, a very standard-looking Plains Indian type of teepee. It was white, but the rest was as expected. Inside there was a bed of furs for me to lie on, and a fire circle in the middle, surrounded by rocks. And my Guardian was inside too. As I looked about I realized that he was not just a Guardian….he was a medicine man, a shaman, with many bundles and tools of his trade in the teepee. I further realized that he had answered my request, some time ago, to be a Helper. The only thing that has been missing, and is still missing, is my own ability to perceive his presence, help, and communication.

Millimeter steps are better than no steps.

With gratitude to my Guardian, Helper, and Friend, and my Aloha to all.

EBH