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Title: Newbie Intro Post by ScorpionHand on Nov 15th, 2002, 2:12am Hi there! Thought I'd add my story and 2 cents to the board. Been episodic for 14 years. started at age 15 and visited me about 3 times a year in about a 4 week duration. Now I go about 2 year remission in 8 week duration. I miss the old ones - they were screamers, but left quickly like a broken water sack. Now they flare and linger, kinda like some people I know ;D. I will never stop looking for the "cure", hell I'd settle for the cause. There's too much personality in the beast for me to believe it's a lost cause. People trying every drug, home remedy and so on with one persons cure being anothers trigger throws a red flag in my face. It is obvious that the focus is on the wrong path. Hell, I cured a shadow by brushing my teeth once. I think it is important to define what is primary, and the number one primary that I see is sleep. It doesn't matter what time of day, if you sleep the beast is near. For this and the seasonal repetition I know that it has to be in the area of chemical balance and circadian rythym. The temporary cures that sometimes work are related to the stimualation of the problem. I believe stimulation is a key issue - caffine and effedrine are my most effctive preventative tools, and I have never heard of stimulants causing a problem in clusters. The vasco constrictors, blood thinners and so on help the pain of course. And of course the blood vessels are swelling - your body sees a problem it sends in the army - blood. But I believe these issues are secondary. The sinus problems are from the increased fluid and tears - body says I burn, put it out! Well anyway, I'm up late, tired as hell trying to avoid the beast. I pray that the answer comes within this lifetime. Sorry if I sound bitter, just sick of the pain! - PFDAN |
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Title: Re: Newbie Intro Post by paul_b on Nov 15th, 2002, 4:26am Enjoyed reading your post. The cure is in the search. I'm with you man. |
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Title: Re: Newbie Intro Post by gtar_man on Nov 15th, 2002, 9:50am Welcome aboard - had to vent earlier today myself. My cycles last much longer than yours, but it's the same ol beast. Funny how caffeine seems to help you - my neuro has me off caffeine (read my previous post) and most everything else I enjoy eating - and I can't say whether it's helping or if the whole theory is completely irrelevant. And that's the bitsch of the beast - since nothing sends it packing, you don't know if anything you're doing is helping or hurting. We can only hope some genius research scientist comes down with it and figures it out once and for all. Peace and PFDAN |
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Title: Re: Newbie Intro Post by Georgia on Nov 15th, 2002, 4:39pm Welcome back, Scorpionhand. You were on the old board, yes? Unless that was some other guy with a scorpion tatooed on his hand. Sorry to hear that you are hurting again. Not to sound like Shirley MacClaine here, but I do honestly believe that everything in our lives occurs for a reason, not that we always possess the personal clarity that lies behind the reason, but I believe it exists whether we see it or not. I have recently started thinking (delusional dreaming?) that the karmic (not the chemical or biological) reason I have cluster headaches is to initiate a new line of ch research utilizing scorpion venom as the cure. So how did I come to this lofty conclusion, you ask (other than by taking too many drugs in my lifetime)? Cluster headaches led me to meet Dennis (another ch'er), which in turn led me to move to Texas from NY to be near him. Before I moved here, Dennis had been living in Texas for 20+ years and in that time had seen only one scorpion. Of all the Texans I have spoken to about this - the ratio seems to be the same or even less - 1 scorpion per 20-30 years, or for some, no scorpions, ever, in their lifetime. (I am well aware that this is in no way scientifically valid or representative of the texan population...it is just my observations.) I have now lived in Texas for 5 months, and in that time I have seen four scorpions, one of which stung me twice on my hip (somehow it managed to get inside my pants and panties while I was sitting at the computer in the middle of the night and not sting me until I started walking to the bathroom). When I was stung by the scorpion, neither Dennis or I knew anything about them. We both thought their venom to be extremely poisonous, possibly even deadly. He called 911. Upon arrival, the EMT's informed us that there were no poisonous species of scorpions in Texas. They instructed me to take a benedryl to combat the venom, which would help reduce the swelling and the burning pain. After they left, Den and I went online and started researching scorpion stings. We found that the venom is already being investigated for treatment of cancer (one of the substances in it binds to only cancerous cells - so they are able to attach the chemo drugs to the venom and specifically target ONLY the affected cells…meaning the chemo doesn’t kill the good cells along with the mutated) and its effects on blood pressure, transplant patients, and auto-immune diseases like MS and lupus…HOWEVER…there are over 1500 species of scorpions, only a few of which have had their venom studied…and within those venoms, they have found hundreds of different chemical compounds…many of which are completely unidentified as of yet…those that were found include CA (calcium) channel blockers, NA (sodium) channel blockers, T-cell stimulators, 5HT (seratonin) and on and on. Is it so preposterous to believe that nature has already provided us with the cure to ch within the venom of the scorpion - leaving us the task of uncovering it? It's just an idea, and perhaps a delusional one at that. Anyone interested in pursuing this further with me? Reading more about the chemical compounds already found in the venom? Maybe even convincing a researcher to look into it? I know that many of you are opposed to anything less than 100% scientific, and while my methods of arriving at the thought of venom holding some potential to stop ch are anything but, the compounds being discovered within the venom by true scientific research seem to be many of the same compounds we use on a daily basis to combat this beast or know to be related. I personally intend to continue on this path of possibility, just wondering if there are any other brave or clinically insane souls willing to venture with me. I'll go back to my corner now. Thanks for listening. |
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Title: Re: Newbie Intro Post by suzy617 on Nov 15th, 2002, 5:09pm Hi Scorpion. Welcome to the board, or welcome back. I luv your little beavis headbanger dude. Or is it butthead? :D |
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Title: Re: Newbie Intro Post by Not4Hire on Nov 15th, 2002, 6:59pm GEORGIA: I'm IN...... Quote:
this is JUST the kind of *loophole* that might work..... ...o'wise it's just *Marshmellow Peeps* and a prayer...... ;) |
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Title: Re: Newbie Intro Post by ScorpionHand on Nov 15th, 2002, 8:19pm paul_b- Thanks man. Thought for sure I'd get hammered for writing that... gtar_man- From the name, I assume you play? I've got an Ibanez RG470 and an old acoustic. Play the acoustic and save the electric when I'm in the mood for leads. Food can trigger clusters for me - greasy, spicy type foods. I use to cut stimulants and found it caused more pain. Georgia- Yes I am the same guy. I'm amazed you remember me. It's been a long time, or at least it feels like it has. I tried to stay away for a while seeing that most people didn't want to talk about possibilities of the cause or cure, guess your not one of them. What an irony that would be if scorpion venom contained a cure. suzy617- Beavis - I think he'd make a perfect cluster head...http://members.aol.com/scorpionhand/beavis.gif |
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Title: Re: Newbie Intro Post by Georgia on Nov 16th, 2002, 1:45am NOT4 - Can I just say...YOU FUCKING RULE!! When I posted that last post, I was thinking.."Ahh...what the hell, they all think I am insane anyway, why not prove it?" Nice to know that there are others out there willing to hold your hand while you jump with both feet into the great unknown. So let's do this! Where shall we start? How about seeing if we can find any research about scorpion venom and headaches, hypothalamus, etc? We should find everything that is out there first, I guess. Any ideas? Suggestions? Scorpionhand - Ironic indeed. I don't know that I would have posted all that I did if you hadn't posted first....both the content of your post and of course, your name, inspired me. I do remember you from the old board - not a very common username - not a very common tattoo, at least in my world. Some unsoliticed advice....words from a wise ole ch'er (not me...some old white-haired man I know who happens to be rather brilliant and amazing)..."take what ya need and leave the rest". I am glad you are back. So are you "IN" as well? Up for a little researching? I do hope so. My email is pixieg@txucom.net. If others seem interested, we can post what we find on here, otherwise, we can start out in email and go from there. Thanks guys!! Oh and Not4 - marshmallow peeps aren't such a bad alternative!! Peace and love, Georgia |
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Title: Re: Newbie Intro Post by suzy617 on Nov 16th, 2002, 7:51pm Thanks Scorpion. I added that little guy to my desktop. Now at least I can have company when I do my little headbanger ritual next cycle. ;D |
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