Posted by: eaubeauhorn | August 11, 2009

A non-chemical approach to “rls”

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

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Responses

  1. Your quest for good health is like a detective in a mystery novel. You follow leads, which sometimes net results. Then you encounter dead ends. Then some other clue takes you in a new direction. More results. Then more dead ends and MORE clues!

    But through it all, you are indeed progressing through the mystery novel and it is my sincere hope that the mystery is SOLVED before you reach the Big Kahuna in The Sky! 😉


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