Joni, you are absolutely correct to urge caution and express concern. This drug is not something that can be taken lightly. It's an amphetamine. There are risks with it, as with any drug, including dependence. Doc Finkel and I went over every aspect of this. It isn't for a long term treatment, it's short term for a very specific use, and the science and medical rationale behind it was fully explained and makes so much sense it almost seemed ridiculous no one had thought of it before.
Amphetamines are prescribed to ADD/ADHD patients, Adderall is prescribed at a typical dose of 30mg, I am on dextroamphetamine 5 mg. It's a fairly low dose, and the way it works is to give what I call a 'juice boost' to the seratonin, norephinephrine, epinephrine and dopamine levels as well as the next level down to the calcitonin gene related peptides. I've been doing advocacy for CH for many years now, and have extensive papers on the various theories and causative considerations involved with CH. SSRI's and SNRI's are often prescribed for us, both for CH for the speculation that seratonin is involved, and for the natural depression that results from severe pain over an extended period. The problem with those medications is they take a fairly long time to work for a clusterhead. And an eternity to work for a patient who scored so high on the BDA test it indicated I should have already killed myself. So the dextro is to give a boost to those chemicals that govern mood and pain and allow them to normalize and regulate. The brain has a regulatory system that mandates regulation of those chemicals if, say, dopamine is released in large quantities too often. It's well documented in methamphetamine users - the amount of dopamine released is staggering, and that euphoria is what hooks people. Unfortunately, the receptors can't reuptake that much. Eventually, the brain will literally kill the cells that give off the dopamine in order to try to regulate the amount.
So yes, there is caution to be used. A great deal of it. As Helen said, there is a network in place to make sure I don't do anything stupid at any end of the spectrum. The immediate 'watchers' know me so well that I cannot fool them through voice, in person, or through black squiggles on a computer. They have every possible means of contact to Clark and will use it any time day or night and can reach him anywhere. I also have the family here to make sure I stay true.
The idea behind all this is to allow the amphetamines to get my mood back to a somewhat stable position so that whatever the next phase in treatment is will have a much much better chance of succeeding. There is a significant and scientific, medically rational argument behind this that was explained to me, but it's part of ongoing research and I really don't think it's my place to start telling the world about it. No doubt there will be papers published and it will be shouted from the mountain tops when it's evidenciary based and documented data. Right now it's very much like the busters, it's got a huge pool of anecdotal data, but medicine likes evidence.
What I can tell you is that I don't get 'high'. Although Doc Finkel said more than once a little bit of euphoria is not a bad thing LOL. I prefer my euphoria to be natural. High on life kind of stuff. It's why I posted the story of impossibles. I am a person who gets a natural high from being told you can't, it's impossible, it will never happen, etc. and proving them wrong. It's that part of me that I remembered exists - that I was able to tap into again. THAT is what is bringing about the dramatic change, the drug was simply a catalyst that allowed me a momentary reprieve to see that. If that didn't already exist in my personality, it wouldn't have shown up.
I have been laid flat by blow after blow in life over the last 15 months. It is unreasonable to expect that I am going go from that state to taking on the world overnight. I want to, but it would be foolish and disastrous. So, I have gone from laid flat to all fours. Next step will be to crawl, then to stand, then to walk then to run, then I'll take over the world. I feel good, I am feeling like me again, and I am thankful for that every minute and every minute I feel that way builds upon itself ensuring the same for the next minute. I am being very realistic with this process, and am cautiously optimistic. I have a plan of attack for the next month. That's all. I have no cure all, no permanent fix, no sure fire gonna make it all better treatment. What I have is hope. A doctor that understands me as a friend would rather than as a patient. And together, we have a plan for the next month and it's a feasible plan, and it will have bumps in the road, and I know that. Being aware is enough for me, I can deal with what is coming if I know it's coming. Doc Finkel did his part, now it's my turn to go to work. And make no mistake, it's work. No medication in the world can give you sustainable hope and happiness. And those things require effort, flexibility, persistence, perseverance, a positive attitude and a dose of realistic optimism. All that takes some effort and work when you are in the dumps and feeling really down. I am simply going to continue to build on each and every positive feeling and action, and in doing so, success is inevitable.
A tenet I've always believed is it's impossible to fail in the journey of life - there is no destination to reach so you can't fail by not reaching it - life is the journey - and as long as you've lived, you've succeeded. HOW you live your life is what determines your level of contentment and happiness, and each of us has a different set of criteria for that. I know what mine are, and I've been given a reprieve from the depths of hell to see that criteria and remember "Oh yeah, that's what I do...that's who I am....shit, I better get a move on".
Do NOT ever apologize for stating a concern or something that you feel is a danger, or even a criticism - human beings require that kind of feedback as social creatures. Without it, I shudder to think what some would end up doing. It's one thing to be too dumb to know you can fail, it's altogether different to be too dumb to know that jumping off that cliff will kill you. There's a fine line to walk, I'm just a person who has achieved some things for the simple reason that I simply did not once consider, or even have it occur to me, that I might not succeed. I'm just applying that same thing to this process.
Cat
egads, I am glad I didn't author war and peace, it would have been 3 times longer. See what you all get for me feeling like me again?
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Some ramblings on the meaning of finding hope... (Read 1845 times)
