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LeeS
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Alternative therapy update
« on: Jul 10th, 2006, 1:42pm » |
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It's been quite a while since I updated my progress here, but I thought that now that it's been two years since I embarked upon the alternative treatment, I should provide an update.
I started getting these bloody headaches – yeah right, headaches – in the late 1990s. Each time of course, when I had just about reached breaking point, the buggers went away. They're clever like that. Of course they would always come back, but then one day, they decided not to leave. Not so clever in my book.
My original episodic cycles were haphazard but averaged out at around four weeks on followed by six weeks off. Sumatriptan and O2 always worked well for me, but not well enough. My neuro prescribed verapamil, but for a number of reasons (not least because I thought it may make me chronic) I never did take it. I went chronic anyway – go figure.
My official chronic status made it easier for me to consider alternative CH therapies - although with the benefit of hindsight I wish I hadn't waited that long - and I finally embarked upon the clusterbuster treatment in the summer of 2004. Overall, I have had significantly great results, but it's taken a lot of time, effort and a great deal of support (thanks guys). In summary it's been a roller-coaster of experimentation. In two years I have taken dozens of doses of psilocybe mushrooms and LSA, varying in strength from 'mildly tipsy' to 'take me to the moon'. More recently, it has been 40 days since my last maintenance dose and if you exclude the single post dose Kip 2 hit (which I do) then I have been completely PF for 75 days now. I am very pleased to say that's my longest remission period since my CH started some seven years or so ago.
I could reel off endless statistics as to how well I am now compared with a couple of years ago, but I believe that the true indicator would be to just ask my close friends (many of whom are here) and family. It is they who really know and acknowledge that I have finally got my life back; so many thanks to all who have gone before me and all the best to those that follow.
For all those who are going to the OUCH and clusterbusters’ conventions – have a great time! I shall be there in spirit.
-Lee
Edited for spelling - thanks boss 
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| « Last Edit: Jul 11th, 2006, 9:33am by LeeS » |
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Flash
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Re: Alternative therapy update
« Reply #1 on: Jul 11th, 2006, 4:57am » |
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Lee - glad to hear you are doing well.
I'm somewhere in the midst of another phantom episode, although it's only been 3 months since the last non-event.
Worst headache so far has been a kip 2 for 1 hour. Have been getting approx one near silent hit every 2 days. Have noticed the kip 2 attacks only occur if I drink the day before. Oh poor little me how do I cope LOL  Actually I quite look forward to the odd minor attack because I still benefit from the dreamy endorphin type comedown feeling after it's gone.
My last dose was in April 2003. This is now in excess of 3 years remission. Prior to starting this treatment 13 1/2 years ago my remission periods lasted around 6 months.
It's still inclear whether I will ever have to dose again. A couple a times lately I've been tempted, but again the episode has never matured into anything I'd class as painful. Would be delighted if things just stayed like this for the rest of my life.
My gut feeling is that I might experience a proper episode nearer the end of this year so lets see what happens. Mind you I thought that last year... Should have some shrooms ready by then just in case.
The only thing that puzzles me is why anyone is bothering with conventional meds... in fact why is anyone even bothering with CH anymore? It sounds like a real drag!
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| « Last Edit: Jul 11th, 2006, 4:58am by Flash » |
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LeeS
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Re: Alternative therapy update
« Reply #2 on: Jul 11th, 2006, 6:49am » |
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Good to hear from you Flash and thanks for the advice over the last couple of years. You ever heard from Henk?
Hope you make it through the year.
-Lee
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LeLimey
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Re: Alternative therapy update
« Reply #3 on: Jul 11th, 2006, 7:37am » |
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on Jul 10th, 2006, 1:42pm, LeeS wrote:| ... psylocybe mushrooms .. |
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Learn to spell you dozy pillock!
Seriously I couldn't be happier for you. You've been so much help to so many others not least of all me that you truly deserve every pain free day you get and long may it continue. Now where's the money you promised if I was nice huh?! 
Flash I'm glad you're doing so well.. a case of "trust in God but keep your powder dry" eh? Always a good way to work!
As far as why anyone would use the conventional meds question goes, its horses for courses. I know how frankly terrified I was of trying the alternatives. I know I'm not the only one in that position. Personally whilst I myself can now happily say that the only relief from getting hit I've had has been through using LSA I know others ARE getting results on their choices.
My thinking is and always will be to make sure the info is there, which it is, in no small part to you, and let people decide on their own course of action.
I'll support anyone in their fight to be pain free by whatever means they choose.
This LSA stuff IS bloody brilliant though isn't it?!  I've just dosed today ready to get through the conventions now.
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Filbert
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Re: Alternative therapy update
« Reply #4 on: Jul 11th, 2006, 7:37am » |
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Great news Lee! Now how about another beer? 
Fil.
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LeeS
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Re: Alternative therapy update
« Reply #5 on: Jul 11th, 2006, 9:36am » |
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on Jul 11th, 2006, 7:37am, Filbert wrote:| Now how about another beer? |
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Now that takes me back somewhat
Game on - I do believe it's your shout mate
-Lee
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nani
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Re: Alternative therapy update
« Reply #6 on: Jul 11th, 2006, 9:48am » |
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That is terrific news, Lee.
Question: Were you always a dozy pillock, or is that a post-busting development?
Busting works.... better than any other treatment I've tried. I, too, am able to go over 40 days between doses. My head hasn't felt this good in many years. I also have yet to experience any trippy feelings, or even a buzz. Thanks to you, Flash, the other busters, and especially BobW... I am fully enjoying the life I got back.
I still don't like beer, though.
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Filbert
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Re: Alternative therapy update
« Reply #7 on: Jul 11th, 2006, 9:52am » |
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Lee I knew it would be my shout! Hasn't August Bank Holiday Friday become a traditional meet up?
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LeLimey
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Re: Alternative therapy update
« Reply #8 on: Jul 11th, 2006, 10:11am » |
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Filb old mate it is definitely HIS shout since he sloped off like a big girls blouse LAST August leaving you to look after us poor females single handed
Good job we had quality over mere quantity eh?! 
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tommyD
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Re: Alternative therapy update
« Reply #9 on: Jul 11th, 2006, 3:40pm » |
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Quote:Filb old mate it is definitely HIS shout since he sloped off like a big girls blouse LAST August leaving you to look after us poor females single handed
Good job we had quality over mere quantity eh?! |
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Doesn't this make you wonder what these supposedly proper British folks are up to over there?
And just what IS a dozy pillock?
LOL! Can't wait to meet you in Chicago!
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LeLimey
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Re: Alternative therapy update
« Reply #10 on: Jul 11th, 2006, 3:58pm » |
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Tommy I'm really flattered you think I'm proper 
Can I quote you on that?! A dozy pillock is a more colourful way of saying a stupid idiot I suppose, it just doesn't sound quite so bald does it?
I'm really looking forward to meeting you too!
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Weatherman
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Re: Alternative therapy update
« Reply #11 on: Jul 11th, 2006, 8:01pm » |
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Hi All
Sorry if this is a dumb question but I'm pretty new here. Is this shroom therapy only effective on chronic CH or has it been effective for episodic too?
Thanks!
Doug
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MJ
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Re: Alternative therapy update
« Reply #12 on: Jul 12th, 2006, 2:10am » |
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Great to hear of continuing success Lee.
on Jul 11th, 2006, 4:57am, Flash wrote:
The only thing that puzzles me is why anyone is bothering with conventional meds... in fact why is anyone even bothering with CH anymore? It sounds like a real drag! |
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Words I'd like to say often.
Doug (weatherman)
Yours is a great question.
The shrooms and LSA have been a huge benefit for both. I dont know the stats right off but its a remarkably high success rate.
Seems with many folks, different doses and variations are tried before final success.
For some a single dose does the trick knocking CH down.
Results not just for a day but literally months and years on end as Lee attests to above..
For me it was RC seeds (LSA) I did have to experiment a bit and had great advice to work with.. But I have also been successfull. I should also say for me that in 30 years none of the proper meds worked and I went ten years without medicinal aides prior to busting CH with the clusterbuster methods.
Look here if you havent allready.
http://www.clusterbusters.com/faqlsa.htm
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Flash
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Re: Alternative therapy update
« Reply #13 on: Jul 20th, 2006, 9:04am » |
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My phantom episode continues. Only get an attack the morning after I drink alcohol. Had one this week hit... all of Kip 3 for 10 mins, but eating some breakfast ceral, and drinking a cup of green tea put it away.
Some interesting observations:
The only attacks I've been getting are after drinking alcohol.
Alcohol does not trigger an attack at the time of consumption, but instead the morning after. Although it's typically been between 8pm and 10pm that I've drank any booze.
Red wine seems to trigger a worse attack than other types of alcohol.
I reckon this phantom has now been going around 1 month, and it should be on it's way out shortly.
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Flash
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Re: Alternative therapy update
« Reply #14 on: Jul 27th, 2006, 5:21am » |
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The phantom episode rocks on, which a new twist. I'm have now experienced 5 attacks at Kip3. Left unattended these appear to run for approx 1 hour... but have only let one attack go all the way. Am still going up to 24 hours between attacks and at worst getting 2 hits in the same 24 hours. Last night I got hit twice within 3 hours.
So it's hardly an emergency situation yet, this may simply be the peak of the phantom episode, and the timing is about right for that, given that the meat of my epsiode would usually last 1 month.
It still feels like the headaches are being restricted. Perhaps the worst one was bordering on a kip 4.
Have been doing some experimentation, through bear in mind that this might only apply to phantom episodes...
1) Have noticed that hits do not occur within 24 hours of taking 10mg of the antihistamine benadryl (cetirizine hydrochloride) for hayfever. Sure that there was previously reported by the medical world to be some tentative link between CH and histamine. Well perhaps the effect is more noticable with phantom episodes, and/or weaker attacks. Just took a tablet at 7am this morning so lets see how today goes...
2) The green (gunpowder) tea has so far worked spectacularily well! It has to be taken within the first 5 minutes, but when it is, the attack is halted in it's tracks after precisely 15 mins. From experience I'd say this works as well as O2 on low level attacks, but without the rebound. But again it's early days.
3) REMEMBER this is based on only 5 attacks, all in the space of a week, although the phantom has been going a month.
4) I calculate pain scores by multiplying the avg kip level of each attack by it's duration, then summing these for all attacks that day. To date my worst day has totalled Pain score 4. My previous record was 196...
I have 4 RC seeds that have been soaking in the fridge for a couple of days, if I get to the stage where I can categorically state that this is a proper episode and getting worse, then I'll go ahead and taken them. But as things stand this is as yet unclear.
I'm starting with 4 because the RC seeds are new to me. Please could anyone with experience advise me of how many they have taken, and what sort of effects they got at those doses. Thank You.
I also have 3g of dried shrooms as a back up, which for me is like 6 doses.
Flash
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| « Last Edit: Jul 27th, 2006, 5:27am by Flash » |
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LeLimey
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Re: Alternative therapy update
« Reply #15 on: Jul 27th, 2006, 5:26am » |
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Flash hi!
two minutes and check your pms
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Carl1958
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Re: Alternative therapy update
« Reply #16 on: Jul 27th, 2006, 7:50am » |
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on Jul 27th, 2006, 5:21am, Flash wrote:I'm starting with 4 because the RC seeds are new to me. Please could anyone with experience advise me of how many they have taken, and what sort of effects they got at those doses. Thank You.
Flash
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Hello Flash,
I decided to start treating my CH with Alternatives a year ago now my friend.
I started by using 15 RC Seeds for my first dose, with no Ill side effects what so ever.
I raised this to 25 seeds for maintenance dose purposes, still with no Ill side effects.
You may wish to consider dropping your seeds into a small egg cup of water, giving them a little tap, just to break the surface tension, & only using the ones which sink.
I have a gut feeling that the ones that float are no longer viable.
I was chronic, & after 5 doses with the RC seeds, I took 1grm of dried shrooms.
I have now been completely PF for 6mths, thanks to guy's like you, & the rest of the Buster group.
Be well.
CArl.
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CHTom
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Re: Alternative therapy update
« Reply #17 on: Jul 27th, 2006, 8:34am » |
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What is this "phantom episode" stuff that seems to hit primarily "alternative" medication users? Either you are having a CH or not. If you are having a "phantom episode", especially for a month, then something else is going on with you that has nothing to do with CH. Regarding the use of psychadelics to treat CH, there is no proof of that working except among those who use that type of drug and they have a vested interest in proving that it works-not very objective. I sometimes wonder if those who claim that using LSD, etc., stops their CH attack actually have CH at all. If anyone can point me to a genuine scientific article that shows a connection between the use of psychadelics and relief from CH, please do.
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pattik
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Re: Alternative therapy update
« Reply #18 on: Jul 27th, 2006, 9:12am » |
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Hi Flash,
First of all, ignore the troll. Secondly, I used RC seeds for my last episode as follows: first dose was 15 seeds soaked for 24 hours in a couple tablespoons of white wine in the fridge.
A week later, I used 20 seeds soaked in water at room temp for 24 hours, and the third and final dose (another week later) was 20 seeds in water for 24 hours in the fridge. My results were mixed, but positive. Each dose would knock out my multiple nighttime hits for 3-4 days. I suspect the viability was an issue. We need to figure out a reliable way to eliminate the non-viable seeds. I also tried a 5 seed SPUT near the end of my cycle to see if it would abort a hit. PM me if you want a description of how I did it--it helped. By the way, I use benedryl at night during a cycle to at least help me get back to sleep, and I have thought that it could have some positive effects on holding down the nighttime hits as well.
Patti
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CHTom
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Re: Alternative therapy update
« Reply #19 on: Jul 27th, 2006, 9:40am » |
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on Jul 27th, 2006, 9:12am, pattik wrote:Hi Flash,
First of all, ignore the troll. Secondly, I used RC seeds for my last episode as follows: first dose was 15 seeds soaked for 24 hours in a couple tablespoons of white wine in the fridge.
A week later, I used 20 seeds soaked in water at room temp for 24 hours, and the third and final dose (another week later) was 20 seeds in water for 24 hours in the fridge. My results were mixed, but positive. Each dose would knock out my multiple nighttime hits for 3-4 days. I suspect the viability was an issue. We need to figure out a reliable way to eliminate the non-viable seeds. I also tried a 5 seed SPUT near the end of my cycle to see if it would abort a hit. PM me if you want a description of how I did it--it helped. By the way, I use benedryl at night during a cycle to at least help me get back to sleep, and I have thought that it could have some positive effects on holding down the nighttime hits as well.
Patti |
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Boy Patti, you sure have some complicated rituals-and soaking seeds in WINE(!) when everyone knows that alcohol is a trigger. The only thing that you wrote that can be proven is that Benadryl will help you sleep. I'll bet that no matter what you do with your seeds you don't get consistent results and you still get CH pain (except when you take the Benadryl). It appears that the rituals that people go through in preparing their seeds is just as, if not more, important than taking the seeds-and that is OK, ritual is good and can help you feel better; religions have known that and used rituals for thousands of years before Judaism and Christianity and continuing with it. So, go soak your seeds and I really do wish you well-if what you do helps your pain then continue doing it. Having suffered from CH since 1980, I really do not want to see others suffer. Now where did I put my LSD/peppermint oil drink?
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nani
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Re: Alternative therapy update
« Reply #20 on: Jul 27th, 2006, 9:49am » |
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on Jul 27th, 2006, 9:40am, CHTom wrote:
Boy Patti, you sure have some complicated rituals-and soaking seeds in WINE(!) when everyone knows that alcohol is a trigger. The only thing that you wrote that can be proven is that Benadryl will help you sleep. I'll bet that no matter what you do with your seeds you don't get consistent results and you still get CH pain (except when you take the Benadryl). It appears that the rituals that people go through in preparing their seeds is just as, if not more, important than taking the seeds-and that is OK, ritual is good and can help you feel better; religions have known that and used rituals for thousands of years before Judaism and Christianity and continuing with it. So, go soak your seeds and I really do wish you well-if what you do helps your pain then continue doing it. Having suffered from CH since 1980, I really do not want to see others suffer. Now where did I put my LSD/peppermint oil drink?
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Shut up, chump. Instead of the peppermint oil/LSD combo...why not stick with your uber-successful DBS surgery and 4 doses of narcotics everyday? BTW everyone knows that alcohol is NOT a trigger for everyone. 
Flash, my maintenance doses (still about 42 days apart) consist of 15 RC seeds, with a tiny amout of mushroom "crumbs" (from the bottom of my SPUT container) soaked for 2-4 hours in water. I have yet to feel "anything" from them. I do get "ping-pong" shadows during the dose. I get any number of variations of "phantom" activity. I also noted that my autonomic symptoms during regular and phantom attacks have all but disappeared. My eye tears, but that's all. Interesting developments... and I'm enjoying my PF time very much.
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CHTom
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Re: Alternative therapy update
« Reply #21 on: Jul 27th, 2006, 10:09am » |
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on Jul 27th, 2006, 9:49am, nani wrote:
Shut up, chump. Instead of the peppermint oil/LSD combo...why not stick with your uber-successful DBS surgery and 4 doses of narcotics everyday? BTW everyone knows that alcohol is NOT a trigger for everyone.
Flash, my maintenance doses (still about 42 days apart) consist of 15 RC seeds, with a tiny amout of mushroom "crumbs" (from the bottom of my SPUT container) soaked for 2-4 hours in water. I have yet to feel "anything" from them. I do get "ping-pong" shadows during the dose. I get any number of variations of "phantom" activity. I also noted that my autonomic symptoms during regular and phantom attacks have all but disappeared. My eye tears, but that's all. Interesting developments... and I'm enjoying my PF time very much.
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Sho boss, ayes shuttin up! So now we add "mushroom crumbs" to the mixture? This is getting even more complicated...what are "ping-pong shadows" and what are the variatrions of "phantom activity"? I've had CH for 26 years and have yet to have a "phantom" attack-with me I either have an attack or I don't. As far as my evil "narcotic" use, if you have read this site regularly you will find that there are many of us with chronic CH who do use narcotics and they work for us-from the tone of your note, it seems obvious that you have disdain for those of us who do use narcotics, which are prescribed by a physician, in my case by an anesthesiologist in a pain clinic, while you take substances that are not prescribed and couldn't be because they are illegal. Maybe you should think about the consequences of supporting the illegal drug trade before critcizing those of us who use legally prescribed substances (under very strict conditions). OK, so now I have to add mushrooms (cooked or raw and what kind?) to my peppermint oil/LSD mixture. Do you ever clean out the container that you use to make your concoction (if so, how do you keep the old mushrooms in it)?
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nani
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Re: Alternative therapy update
« Reply #22 on: Jul 27th, 2006, 10:15am » |
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on Jul 27th, 2006, 10:09am, CHTom wrote:
it seems obvious that you have disdain for those of us who do use narcotics, |
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Actually, no. I only have disdain for someone who claims his invasive surgical procedure is the way to go, but still has to use 4 doses of narcotics everyday. I'll answer any questions you have on a different thread, I will NOT turn Lee's thread into one of yours. I've seen you go at people here, and I mostly stay out of it. Do not mistake that for fear of getting into it with you. I'm happy to do so.... on a thread of our own. Bring it on, chump...
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Margi
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Re: Alternative therapy update
« Reply #23 on: Jul 27th, 2006, 10:19am » |
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What's the matter, Tom? Can't find any puppies to kick or old ladies to knock over in the street today?
This is a very interesting discussion going on here and there are those of us out in the audience here who are following this treatment methodology and trying to learn the best way to go about treating our sufferers when the time comes.
Please go peddle your bike on the other side of the street, would you and let these good folks continue their conversation? We honestly don't need your misplaced punctuation.
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pattik
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Re: Alternative therapy update
« Reply #24 on: Jul 27th, 2006, 10:20am » |
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on Jul 27th, 2006, 10:15am, nani wrote:
I'm happy to do so.... on a thread of our own. Bring it on, chump... |
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Yes, let's allow Lee's thread to stay on subject--right on Nani!
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