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Re: Question about "alternitive" therapy
« Reply #100 on: Dec 13th, 2004, 11:27am »
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on Dec 12th, 2004, 11:02pm, Liby wrote:
WOW, there definately are some passionate opinions on this subject.  I am not a sufferer I am a supporter, so maybe, well most definately, I see things from a different view.  I noticed a few things while reading this thread.  First, the two people who seemed to speak the strongest in this thread, for the treatment working med free,  Flash and Jmin, if I understood correctly, both had not used any type of meds themselves prior to trying the treatment, or atleast not for quite a long time.  Is it possible that, that contributed to them seeing better, quicker results from the treatment, and since they weren't on any meds they didn't have the fear of giving them up so they can't understand that, they can only speak to the great results that they got that came from being med free, hence thier passion and point of view.    
     I also have to wonder... If the people who speak out so passionately in favor of the alternative treatment aren't really trying to help others find the same freedom that they have found, then what is thier motive?

 
I acquired CH aged 16, from there on it was a downward spiral for 7 years.  Although my CH is episodic the episodes are quite intense.  It's now apparent that at least some of the blame for this likely rests with the analgesic drugs that the Doctor would prescribe.  My weight would plummet around 2 stone subsequent to each episode.
 
College was a big problem, it's hard to complete a course and pass exams with 2 months non attendance during an 8 month term.  I ended up repeating years, taking time out etc.
 
Relationships were also a problem.  This is the major downside of getting hit with CH at an early age.  Just as a romance was blossoming I'd go and dissapear for a month.  Try explaining that one.  
 
By 1993, after 5 years at college with nothing to show for it, things were looking pretty fuckin grim.  I now operated in 6 month spurts.  It was becomming apparent that even if I managed to get the degree that there would be serious problems holding down a job.  All this was hard to stomach because I am by nature an exceptionally positive person.
 
The result was a hedonistic and destructive approach to my PF time.  Drinking and dope smoking became a constant source of escapism.  I wasn't going to get anywhere so why bother trying.  No point planning more than 6 months ahead as my world was scheduled to fall apart.  Ultimately I alienated friends, and fell in with the wrong crowd.  Brains + determination + nothing to lose + a big chip on your shoulder... dangerous combination.
 
The one day I took LSD, and unbeknown to me, nothing would EVER be the same again.  The headaches stopped coming, the college degree was completed AND IN SPITE of getting hit with glandular fever.  That last part is worth mulling over; glandular fever is a notorious cause of student failure.
 
The alternative lifestyle was still on-going but with the headaches seemingly gone I began to think about the future and started a legitmate business.  I grabbed every opportunity with both hands.  Even the live fast die young attitude was transformed into a more positive seize the day approach.  
 
12 years later the company I founded employs 59 people and has been valued at £5.5M.  In addition to that I've realised my dream of owning a bar.  Relationships also ceased to be a problem and we've been married for almost 5 years.  
 
So hopefully that explains why I am so pro-shrooms.
 
In the past few weeks I've been taking steps to come out of the closet.  It's likely that as things develop, stories like mine could be helpful to the cause.  My avator is taken from a recent photo, and my email address is now listed.  Using those clues plus my location and nickname it becomes a relatively trivial matter to verify my story.
« Last Edit: Dec 13th, 2004, 11:29am by Flash » IP Logged
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Re: Question about "alternitive" therapy
« Reply #101 on: Dec 13th, 2004, 11:58am »
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CHeers Flash!
mille grazie
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Re: Question about "alternitive" therapy
« Reply #102 on: Dec 13th, 2004, 12:32pm »
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cool.  The notification thing is apparently fixed.  Thanks for testing it out, though, boys.
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Re: Question about "alternitive" therapy
« Reply #103 on: Dec 13th, 2004, 1:02pm »
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Thought you were quiet Renee Wink Way to go Cool
 
Flash coming out the closet LOL.  May have to myself ...
 
-Lee
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Re: Question about "alternitive" therapy
« Reply #104 on: Dec 13th, 2004, 1:14pm »
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Cool
 
Just enjoying life and wanted to share now that things are on track!
 
This will be a happy holiday like no other since 1980.
 
thank you clusterbusters!
 
Hey Lee,
Why don't you come out?  laugh
 
modified:  Changed tag line!  Thanks for the reminder.
« Last Edit: Dec 13th, 2004, 1:24pm by Renee » IP Logged

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Re: Question about "alternitive" therapy
« Reply #105 on: Dec 13th, 2004, 3:53pm »
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Thank you Flash for sharing your story. But thank you VERY much for staying around and helping others too. So many people would have found their cure and simply disappeared.  
Instead, you've saved many people many years of pain, and are always ready to help another. You're quite a guy to do this for so long with so much happening in your life. Few would bother.
 
Thank you to all Clusterbusters. You have given us hope.
 
It is wonderful to read the progress of chronics using this therapy with success. Great News Renee!!  
Happy daze to all
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Re: Question about "alternitive" therapy
« Reply #106 on: Dec 13th, 2004, 4:36pm »
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The side effects of Cafergot and Immitrex (such as pounding heart) prompted me to take a second look at psylocybin.  I followed directions carefully.  Didn't much like the experience but figured it was for a good cause.  That was yesterday.
 
Last night I had a record three headaches during the night, not much sleep, and a constant shadow today that an ordinary person would call a headache.  
 
Anyone got any explanations or suggestions?  
 
Hanging in, barely  
 
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Re: Question about "alternitive" therapy
« Reply #107 on: Dec 13th, 2004, 4:53pm »
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Not unusual to get hit right after dosing.  Depends upon the person.  Not unusual to see HAs increase right after dosing.  Depends upon the person.  My husband reacts like you.
 
Try some Red Bull and a couple Excedrin for the post-dose hangover feeling.  I think that dosing in the a.m. or early afternoon is best...least for him.  He yawns like crazy, but as soon as it wears off he's wide awake...impossible to sleep for several hours.
 
You didn't elaborate upon "how" you dosed.  Lots of good info at cb.com if you haven't read it already.  Make sure that you follow the "Important Notes" and look at the recipe for tea.  All this was gleaned, trial and error, from less-than-successful attempts.
 
Hope you have success!
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Re: Question about "alternitive" therapy
« Reply #108 on: Dec 13th, 2004, 5:29pm »
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Same thing here.  Typically get hit pretty good after dosing and there is no sleep for a few hours.
 
The next day i'm pretty much wiped out, drained and overall yucky with another type of headache.
 
The second day I'm good to go.
 
Like Shelley asked, how did you dose?  How much?  Detox?  Diet?
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Re: Question about "alternitive" therapy
« Reply #109 on: Dec 13th, 2004, 6:06pm »
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Maryo -
 
Like Shelly and Renee said, this is not uncommon at all, and could be a sign the Beast has been disrupted and is on the run. There's a chance you could see the Beast fade away without taking anopther dose...though it's likely another dose or two or three could be called for.
 
Lots of folks "didn't much like the experience." You might want to try the "sipping" method - very small doses that caue very little if any psychedelic effect.  
 
You don't say how much you took, but it sounds like a "recreational" dose.  
 
For example, a recreational; dose might be two or three grams of dried psilocybe cubensis. Many have had good luck wityh half that dose. You would still get some psychedelic effects along with some annoying side effects - quesy stomach, fatigue, yawning, restlessness - and they might be more apparent than from a larger dose, which tends to hide the anoying effects.
 
Or there is the very small dose - an eighth to a half a gram. At this level, there are only the slightest effects of any kind. Since these very small doses don't trigger the high toloerance, making you wait four or five days before dosing, the small "sipping" doses can be taken daily or more than once a day.
 
Many have found relief after a week or three of this. Might take longer. The big advantage: no tripping required.
 
The very small dose can be a small piece of mushroom placed under the tongue, or a few sips of shroom tea. Some folks use this as an abortive treatment, taking the dose at the onset of an attack or to stop persistant shadows. Works for some.
 
Hang in there and good luck.
 
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Re: Question about "alternitive" therapy
« Reply #110 on: Dec 14th, 2004, 9:41am »
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Slippery Elm Bark is also helpful if you have tummy issues.
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Re: Question about "alternitive" therapy
« Reply #111 on: Dec 16th, 2004, 8:41pm »
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Kiss hello you fabulous people - I just found this site yesterday and am finding my way around.  I have read this entire string with great interest and hope Flash or someone might be able to advise me.  
Ive had episodic CHs for 28 years since I was 16 - this bout I am into my 7th week and having 6-10 attacks per day, half of those near maxing.  Last time they lasted 5 months.  So far I am not on any preventatives so I am very interested in this particular path...
I use codeine and aspirin for the attacks, and my hot water bottle which I could not survive without!  
This morning I began taking magnesium and the water treatment.
I trust these would not interfere?
I would be grateful for advice on how to proceed to see if I might be a suitable candidate - but obviously I dont want to wait to grow anything myself and I am hopeful I could source something here once I knew what to do.
 
Also, I think I read Margi saying the water treatment wasnt effective anymore with other drugs - is that only imitrex or does that apply to all pain killers?  Ive had 18 glasses already today and countless trips to the loo and its only 2.30pm - dont want to keep this up if to no avail!
 
thank you all - take care and keep strong
 
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Re: Question about "alternitive" therapy
« Reply #112 on: Dec 17th, 2004, 8:13am »
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DO NOT TAKE ASPIRIN OR PARACETOMAL FOR CH.  Analgesic drugs make CH mush worse.  The aggrivate the condition, extend your episode, increase the frequency of attacks, increase the duration of each attack, and increase the severity of each attack.  Stop the anagesic and in about a week things will actually improve!
 
The water treatment has some dangers.  It dilutes the salt in your body and alters it's electrolyte balance - this can have extremely dangerous side effects, like causing your kidneys to pack up or your heart to fail.  It's also probably explains why the waterx3 works, assuming it does in fact work.  If you are going to continue with the water treatment then read up about excessive water consumption on the internet and keep it within safe limits.  Adding salts to the water would prevent nasty side effects but doubtless stop the water having the desired effect.  There are drugs available now called sodium channel blockers that probably work on the same principle.
 
If you start the shroom treatment then perhaps try kicking it off with at couple of weeks of sipping.  Start on 1/8th g dried cubensis or equiv dose every night at bedtime.  Get back to us after a week and we can review the dose.  It's possible to increase up to 1/4g x 3 daily so there's plenty of scope.
 
Depending on how this goes it may also be worth trying the odd 1g or greater dose.
 
BUT STOP THE ASPIRIN FOR AT LEAST A WEEK FIRST - not because it will interfere firectly, but because it will be aggrivating your CH.
 
Good Luck!
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Re: Question about "alternitive" therapy
« Reply #113 on: Dec 17th, 2004, 8:14am »
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If you're undertaking the shrooms then yes I'd stop the water treatment also.  It would be worth getting some O2 though if at all possible.  Shrooms tend to increase the effiacy of O2.
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Re: Question about "alternitive" therapy
« Reply #114 on: Dec 17th, 2004, 11:28am »
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yeah, taking magnesium AND the water treatment, I expect you ARE in the loo a lot!   Shocked  I expect you can't even leave your house for extended periods of time, huh?  
 
It certainly isn't a treatment for everyone and Flash is exactly right, it changes your salts balance in your system, which is why the originator of the treatment, Doc Jerry, thought it worked.  IF it's working for you, great - but do be careful with it and do read up on the hazards of drinking too much water.  It certainly is a "therapy" that is more successful if no other meds are being taken, and not one to try if you're doing any other kind of treatment regime.  Good idea to get a multi-vitamin into your system if you're going to continue this treatment though.  
 
Aspirin, codeine and heat for clusters?  wrong, wrong and wrong.  Aspirin will only eat away your stomach.  Codeine does nothing to prevent or break a cycle, and heat is an aggravator for a lot of clusterheads.  Really worth talking to a cluster knowledgeable doc and getting a 'script for oxygen as an abortive at the very least.  Use ice on your pain, instead of heat.  Frozen peas in a bag work well.  
 
If you are able to detox, do look into the shroom therapy.  It has helped a lot of clusterheads break and prevent cycles.  You can read more about it here: www.clusterbusters.com.
 
 
edited to add:  I've just re-read your post and if you've only started the water treatment today, it's probably too soon to tell if it will work for you.  18 glasses is a lot of water!  You should drink an 8 ounce glass every hour through waking hours.  So, unless you're not sleeping at all - you're putting too much water into your system.  Please be careful!  
The one time it worked for my husband, it broke his cycle after two days and ended it completely after a week.  But it did take a full two days before he noticed a difference.  
« Last Edit: Dec 17th, 2004, 11:32am by Margi » IP Logged

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Re: Question about "alternitive" therapy
« Reply #115 on: Dec 17th, 2004, 4:18pm »
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thank you Flash and Margi.  WOW!
There's a bit to get my head around here, but first - Margi, your water treatment page said every half hour or at least every hour - I could manage half-hourly so I did so thats how Ive drunk so much!  And I work from home so loo breaks not a problem!  But I am alarmed to hear of the water dangers so I really would like to see the water cure page updated, and meantime I'll check on internet for more full info as suggested.
 
But something is working - I went to bed early at 10.30pm  last night as I felt confident after my day of water and magnesium - I awoke briefly twice early on but with no pain - next thing I know its 7.30am!  Its been 7 weeks since I slept like that!  Ive had niggles & shadows (which my hot water bottle has eased) but no real pain.
 
So I feel great that Ive had some serious relief, but obviously from what you've both written, there are issues still...  
But because Ive had a good 36 hours, my plan at the mo is to put the shrooms on hold for now and see if I can find some balance here on this water/mag path that might continue to afford relief...
(and for now I'll just drink 1 glass each hour)
 
Im still trying to get my head around the other things - meds/heat - that you've raised, I'll write again soon...
 
thanks again guys, you are great
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Re: Question about "alternitive" therapy
« Reply #116 on: Dec 17th, 2004, 4:39pm »
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good to hear you're getting some relief!  You're absolutely right, Doc Jerry did say every half an hour if you can.  It's honestly hard to drink that much water though, without feeling almost drunk.  So do listen to your body and make sure you don't go too far, ok?  If you start to feel "woozy", light-headed, whatever...pay attention to that.  
 
Hope the good results last for you and hey, if heat works for you, great.  There are some here who do prefer it but they are in the minority.  Whatever stops the pain for you is a good weapon for your arsenal!
 
Keep us posted.
 
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Re: Question about "alternitive" therapy
« Reply #117 on: Dec 17th, 2004, 5:08pm »
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My husband hasn't tried it - only because you have to be MED FREE before you can start (from our understanding)... and he has medications (for other things) he cannot stop taking.
 
If he didn't have to take those medications, I guarantee, he would be doing it too.
 
But I can only speak for him ........ not for others.
 
 
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Re: Question about "alternitive" therapy
« Reply #118 on: Dec 17th, 2004, 6:03pm »
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cheers!
 
I got onto the heat because ice sent me into such outrageous paroxysms of pain I realised the opposite may be beneficial.  For me the heat absolutely is comforting and it eases the pain - on the temple, or when those stabs hit in the eye I can bend the H/W bottle to fold into my eyelid... It helps me 80-90%.
 
I guess this isnt the right place but since we're here, just in case anyone else who finds ice unbearable might get some relief from heat - for me it helps with the shadows and as certain as I can be it eases the onset, reduces the level of intensity, and reduces the duration.  For me it helps the lower level ones go away without meds, and generally my medium attacks (with meds) last 15-30 minutes.  
With the medium-severe attacks I find the H/W bottle (+ meds of course!) not enough on their own and its then the violent rubbing and boring and pounding begins, but shifting the bottle to the other side or my neck can still be helpful then.  Of course, for a full grade attack then anything less than a gun is useless!
 
But maybe I am truly an odd bird (Flash must certainly think so) because I find anteinflamatory aspirin helpful also and Ive been relying on the aspirin as much as I can to keep the codeine levels down (mind you, now Im on the magnesium, Im not having any trouble with codeine side effects!)  
 
Anyway Ill go off & get more info on water etc and will work on maybe finding suitable balance for water & mag (as well as reassess pain killers because Im not even sure what analgesic means ) and see if I have success there before I go down alternative path.  And I'll be onto finding out about O2 first thing monday...
 
bye for now
 
(honestly I am a new person from 2 days ago and I am so grateful to this site and wonderful members - thanks you guys, you've given me relief and new strength)
 
 
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Re: Question about "alternitive" therapy
« Reply #119 on: Dec 17th, 2004, 7:29pm »
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on Dec 17th, 2004, 11:28am, Margi wrote:

The one time it worked for my husband, it broke his cycle after two days and ended it completely after a week.  But it did take a full two days before he noticed a difference.  

 
hi again Margi - just wondering if your husband is a smoker?  (I am)
 
If it is too soon for me to be seeing results from this water treatment, maybe my cycle is just rounding down anyway (but I dont dare think so because its only 7 weeks and last time it was 5 months).  But somethings changed because the night before last for the first time I drank heaps of water that evening and then got a great 5 hour sleep.  Then yesterday drank all day and got 8-9 hours sleep!  But maybe just coincidence if too quick for water (& presumably mag) to be working?
 
But still, very sudden change in pattern because the 2 nights prior, I was having attacks from early evening right through till morning, with nearly half of them near-max or max - but then as Flash points out, maybe the severity & frequency of those may have something to do with the aspirin/codeine...?
 
on with the research...
thanks again
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Re: Question about "alternitive" therapy
« Reply #120 on: Dec 20th, 2004, 9:59am »
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Hi CC,
yes, my husband is a heavy smoker.  
 
So, now that the weekend is through, how are you doing with the water treatment?  Is it still helping you?
 
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Re: Question about "alternitive" therapy
« Reply #121 on: Dec 20th, 2004, 1:53pm »
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on Dec 20th, 2004, 9:59am, Margi wrote:
Hi CC,
yes, my husband is a heavy smoker.  
 
So, now that the weekend is through, how are you doing with the water treatment?  Is it still helping you?
 

 
hi Margi - sad to say I got hit after bed last night, 3 during night and this morning, after 4 days & nights relatively PF.  In view of comments on my meds and to see how long/levels, I went without meds and got through 3 hits k5-7 20-25 mins only H/W bottle.  Also gulped water but dont think that helped
re water Ive been taking a glass an hour up till about 6pm, then half hourly until bed.  In that 4 days Ive had shadows and neck pain and opposite side pain but no hits until last night.  Only thing different yesterday was that I worked and I had hard time with other pains, shadows etc, but I would have expected to get hit in the evening once I stopped work rather than after bed Undecided  I had got used to not sitting down to relax much in evenings because going from activity to relaxation is a major trigger, but the last few days I had been fine to blob in front of TV, as I did last night...
Anyway thats the nature of the beast - think you've got it sussed and bam
Im going to talk to doctor today to get oxygen, and need to decide whether to try alternative
 
I had dared think I might have champagne at xmas - nah Cry
 
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Re: Question about "alternitive" therapy
« Reply #122 on: Dec 20th, 2004, 3:10pm »
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aw, rats, CC - I'm so sorry to hear that you had a bad night.  Here's hoping it was the beast's final kick at you though.  That often happens - just when you think it has left, it will come back and kick you square before it leaves for good.  
 
I wouldn't quit the water just yet though...last night may have just been a blip.  At any rate, still try to get at least 8, eight-ounce glasses into yourself.  It's good for you, anyway.  
 
Have you tried drinking hot water at onset of attack, just out of curiousity?  There are some people (as you obviously know) who do respond better to heat than cold.  It might kind of help your pain from the inside (just as drinking ice water helps the "coldies"Wink.  
 
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Re: Question about "alternitive" therapy
« Reply #123 on: Dec 29th, 2004, 6:32am »
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bumped
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Re: Question about "alternitive" therapy
« Reply #124 on: Jan 28th, 2005, 7:08am »
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again
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