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Title: Clusterbuster Research Question Post by floridian on Jul 2nd, 2004, 10:38am Just wanted to kick out an idea for the MAPS research. I assume that subjects will be keeping diaries to log their heachache frequency and intensity. What kind of biochemical monitoring will be done? I would suggest monitoring choline in the red blood cells - this is normally quite low in cluster heads, and is increased dramatically after taking preventives like lithium. Choline is relatively cheap and easy to monitor, I believe. Choline isn't affected by psychological expectations (a likely criticism of any clusterbuster research, which is impossible to conduct as a double-blind experiment). And it could provide some insight into the mechanism of this therapy. Quote:
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Title: Re: Clusterbuster Research Question Post by notseinfeld on Jul 2nd, 2004, 11:30am I concur. I wonder though if the low choline levels are perhaps just an extended result of say, imbalanced hormone levels or hypothalamic intermittant signaling. Just taking stabs here but aren't we particularly out of the baseline when it comes to lots of intra/extra cellular measurements? Why does Floridian like the choline level so much? What he derive from these levels both before and after psilocybin treatment? Stay tuned folks, I'm betting good money he's gonna reply here----least I'm hoping ;) |
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Title: Re: Clusterbuster Research Question Post by floridian on Jul 2nd, 2004, 12:01pm Quote:
Your right, there is no shortage of things to consider. My nomination of choline for consideration is based on a number of things - because of low cost and ease, because it is correlated to relief when taking lithium, because it indicates an alteration in cell membrane function seen in clusters. etc etc. Also, the choline levels probably don't change very rapidly - measuring this should give a dependable overview of the past weeks or months. Some other chemicals that fluctuate rapidly are difficult to measure unless blood is drawn on the right day. |
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Title: Re: Clusterbuster Research Question Post by notseinfeld on Jul 2nd, 2004, 12:35pm Floridian-- What 'gets' me about our condition outside the horrific pain, job loss, life destruction and occasional embarassment is that to the best of my understanding we have a physical abnormality ineffectively treated with medicines. If the hypothalamus, as controller of hormones isn't functioning properly then trying to add a dab of this, a reduction of that, etc. seems like an exercise in futility. Is the solution in trying to fix the size or shape of the hypo? Is it in reducing or adding cells to the ganglion region? Is it in the quasi-rebooting of this clock via psilocybin? Would ayuasca, DMT, morning glory or combinations thereof work better? My frustration in viewing the physiological impact of this disease stems from the idea that even if choline is imbalaced, NO2 levels are uneven, circadian rhythms are misaligned and all the other issues inherent are just RESULTS of the problem and not the heart of the matter. I'm getting verklempt here--hold a sec.... The ameliorative drugs we all consume perhaps give a reduction of the awful repercussions but still we all have continued pain (and maybe just a wee bit more captain) if we consider the ominpresent side effects of these elixirs. Endeavoring to figure out which parts of the cellular functioning, even if corrected, still leaves the underlying problem which has so many other manifestations unadressed that I could just pull my hair out in sheer confoundment. Hope: Nanotech. Tiny little computer cells directed straight at the hypothalamus for regulation to replace that invasive surgery technique which worked incredibly well---the one where the pacemaker was inserted. (can't remember the name) Please forgive my obvious rambling and know that I'm directing these garbled thoughts at you, just by you. Guess it just seems that your posts are so cool-headed and succint that I wonder how you can stay so focused with your continued medical wonderment! There must be special place in heaven for clusterheads :) nots |
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Title: Re: Clusterbuster Research Question Post by floridian on Jul 2nd, 2004, 1:45pm on 07/02/04 at 12:35:51, notseinfeld wrote:
I agree that medicines that just abort don't get to the root of the problem. But pain relief has value. The trick is to go farther. Nanotech might someday be of use. There is lots of potential there, but also lots of hype. Getting the right bots to the right cells to fix things without breaking anything is a big challenge - but not impossible. Maybe someone else can comment on this (I haven't read the full paper) - but some of the changes in the hypothalamus only occur in cycle, or in chronics (who can break out of a cycle). So some of the changes are reversible. Recovery of function is an interesting phenomenon that gives hope. In the early days of neurobiology, people started associating different parts of the brain with different functions. Destroy the part of a rats brain responsible for hunger, and that rat would starve to death, even when surrounded by food. One day, some researcher decided to keep one of these never hungry rats alive by force feeding him. After a period of a few months, the rat started eating on his own. Other parts of the brain learned how to be hungry. Something we thought was entirely hard wired turned out to be reprogrammable under the right circumstances. Our brains are hopelessly complex, often frail, but also miraculously resilient. There are compounds that can trigger nerve cell growth naturally. There are chemicals that can restore other functions that are normally not present (switching on genes, stimulating particular metabolic pathways), and other chemicals that turn off things that are too high. Some of these have side effects, but as I said, I am optomistic on this. The more we know, the sooner our therapies improve. Most people would agree (or strongly agree) that clusterbusters can break a cycle. I have a feeling (but no proof yet) that it does more than turn off the pain. It may not fix all that ails us, but it probably does a body good. Quote:
That is a big logic problem. Some of those things may be elevated coincidentally, and normalizing them may not make us much better, if at all. But some of those things probably are good markers of the degree of 'clusterness' under the surface. I go on the assumption that the more things get normalized, the better off we are. But CH is not well understood, as we know. Some things are probably more important than others. Quote:
See y'all there. Hopefully, not too soon. :D |
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Title: Re: Clusterbuster Research Question Post by Pinkfloyd on Jul 2nd, 2004, 3:53pm on 07/02/04 at 13:45:35, floridian wrote:
Haven't got a lot of time want wanted to comment on this. Hopefully I'll get back for more on this later but... Hallucinations caused by compounds such as psilocybin, are supposedly caused by those chemicals forcing the brain to use different neural pathways to look at things, than are normally used. A part of your brain is looking at something actually for the first time, in essence. "I've never seen a cloud like that before".....well, its the same cloud, you just haven't seen it from that angle before.... Maybe we are teaching the hypothalamus that there is a different path it can take to do its job. It abandons the painful path and settles into this newly discovered path, after being shown the way, with a couple doses of psilocybin. Sort of like a beaver building a damn across a river. The water will flow around the damn. After this happens a few times, the new river path has worn its way into the earth and will stay on its new path, even if the damn is removed. Leaving only the poor beaver with a headache. BobW |
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