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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Alternative therapy update
        
(Message started by: LeeS on Jul 10th, 2006, 1:42pm)
Title: Alternative therapy update
Post by LeeS on Jul 10th, 2006, 1:42pm
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 :P
Title: Re: Alternative therapy update
Post by Flash on Jul 11th, 2006, 4:57am
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!
Title: Re: Alternative therapy update
Post by LeeS on Jul 11th, 2006, 6:49am
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
Title: Re: Alternative therapy update
Post by LeLimey on Jul 11th, 2006, 7:37am

on 07/10/06 at 13:42:01, LeeS wrote:
... psylocybe mushrooms ..


Learn to spell you dozy pillock!  :P

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?!  ;;D I've just dosed today ready to get through the conventions now.
Title: Re: Alternative therapy update
Post by Filbert on Jul 11th, 2006, 7:37am
Great news Lee! Now how about another beer? 8)

  Fil.
Title: Re: Alternative therapy update
Post by LeeS on Jul 11th, 2006, 9:36am

on 07/11/06 at 07:37:39, Filbert wrote:
Now how about another beer? 8)

Now that takes me back somewhat 8)

Game on - I do believe it's your shout mate ;;D

-Lee
Title: Re: Alternative therapy update
Post by nani on Jul 11th, 2006, 9:48am
That is terrific news, Lee.  ;;D  
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.  ;)
Title: Re: Alternative therapy update
Post by Filbert on Jul 11th, 2006, 9:52am
Lee I knew it would be my shout! Hasn't August Bank Holiday Friday become a traditional meet up?  ;)
Title: Re: Alternative therapy update
Post by LeLimey on Jul 11th, 2006, 10:11am
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?!  :-*
Title: Re: Alternative therapy update
Post by tommyD on Jul 11th, 2006, 3:40pm

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?!  


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!
Title: Re: Alternative therapy update
Post by LeLimey on Jul 11th, 2006, 3:58pm
Tommy I'm really flattered you think I'm proper   [smiley=laugh.gif]
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!
Title: Re: Alternative therapy update
Post by Weatherman on Jul 11th, 2006, 8:01pm
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
Title: Re: Alternative therapy update
Post by MJ on Jul 12th, 2006, 2:10am
Great to hear of continuing success Lee.


on 07/11/06 at 04:57:17, 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!


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
Title: Re: Alternative therapy update
Post by Flash on Jul 20th, 2006, 9:04am
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.
Title: Re: Alternative therapy update
Post by Flash on Jul 27th, 2006, 5:21am
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
Title: Re: Alternative therapy update
Post by LeLimey on Jul 27th, 2006, 5:26am
Flash hi!
two minutes and check your pms
Title: Re: Alternative therapy update
Post by Carl1958 on Jul 27th, 2006, 7:50am

on 07/27/06 at 05:21:31, 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


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.
Title: Re: Alternative therapy update
Post by CHTom on Jul 27th, 2006, 8:34am
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.
Title: Re: Alternative therapy update
Post by pattik on Jul 27th, 2006, 9:12am
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
Title: Re: Alternative therapy update
Post by CHTom on Jul 27th, 2006, 9:40am

on 07/27/06 at 09:12:51, 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

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?
Title: Re: Alternative therapy update
Post by nani on Jul 27th, 2006, 9:49am

on 07/27/06 at 09:40:02, 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?

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.  ;)
Title: Re: Alternative therapy update
Post by CHTom on Jul 27th, 2006, 10:09am

on 07/27/06 at 09:49:39, 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.  ;)

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)?
Title: Re: Alternative therapy update
Post by nani on Jul 27th, 2006, 10:15am

on 07/27/06 at 10:09:52, CHTom wrote:
it seems obvious that you have disdain for those of us who do use narcotics,


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...
Title: Re: Alternative therapy update
Post by Margi on Jul 27th, 2006, 10:19am
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.  
Title: Re: Alternative therapy update
Post by pattik on Jul 27th, 2006, 10:20am

on 07/27/06 at 10:15:12, nani wrote:
I'm happy to do so.... on a thread of our own. Bring it on, chump...


Yes, let's allow Lee's thread to stay on subject--right on Nani!
Title: Re: Alternative therapy update
Post by CHTom on Jul 27th, 2006, 10:32am

on 07/27/06 at 10:15:12, nani wrote:
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...

Four is better than the 16 that I used to have to use just to keep the pain at a somewhat tolerable level and I don't need the four daily...that being cleared up, chump, would you, as the expert, please refer me to any legitimate medical articles that support the effectiveness of your "treatment"?  I will wait for your answer-or one from anyone else-until Sunday; I'm sure that I will have so many articles to read (and not from "High Times", please) that I'll have to stop posting for awhie to get through them all.
Title: Re: Alternative therapy update
Post by nani on Jul 27th, 2006, 10:36am
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1151474239
Title: Re: Alternative therapy update
Post by Margi on Jul 27th, 2006, 10:46am

on 07/27/06 at 10:32:34, CHTom wrote:
I will wait for your answer-or one from anyone else-until Sunday;


What's magic about Sunday?  Is that the day you turn back into a toad?  

I'm so out of the loop anymore that I'm not sure it's politically correct to do this and, if not, I apologize in advance to the folks who've dedicated their lives to this research but....here, Tom - go get yourself a donut and read this site.  

www.clusterbusters.com

Obviously, your head has been in your nether region and you must have missed the years of research and posting that has preceded your sudden discovery of this very viable alternative treatment.  

Although, I guess if you're taking 4 narcotics a day, that would explain a lot.
Title: Re: Alternative therapy update
Post by CHTom on Jul 27th, 2006, 11:02am

on 07/27/06 at 10:46:31, Margi wrote:
What's magic about Sunday?  Is that the day you turn back into a toad?  

I'm so out of the loop anymore that I'm not sure it's politically correct to do this and, if not, I apologize in advance to the folks who've dedicated their lives to this research but....here, Tom - go get yourself a donut and read this site.  

www.clusterbusters.com

Obviously, your head has been in your nether region and you must have missed the years of research and posting that has preceded your sudden discovery of this very viable alternative treatment.  

Although, I guess if you're taking 4 narcotics a day, that would explain a lot.

Oh Margi, does this mean that our love affair is over? [smiley=nono.gif]  Do you know what evil narcotics I am taking or are they all the same to you?  What psychadelic drugs are you taking and are they legal?  I always thought that some of the things that you said and the way you stumbled around was a sign of the throes of passion-now I know that they were just symptoms of peppermint oil/LSD/various kinds of seeds and god knows what else; now I know why I had to buy so many boxes of birdseed for my parakeet-'twas you who were eating them, not he!  The shame, the shame.  I still love you, but we can never marry as I noticed, but didn't want to say anything, that you had begun growing feathers on your back.  Margie wanna cracker?  Just say "NO" to birdseed!
Title: Re: Alternative therapy update
Post by Margi on Jul 27th, 2006, 11:24am
dude. you're naked.  I gotta go.

[smiley=laugh.gif]

sorry, it's the only thing I could think to say to this guy.  I think the clips have come undone from his straight jacket today and he's found access to a keyboard.  God help us all.
Title: Re: Alternative therapy update
Post by Melissa on Jul 27th, 2006, 11:28am
Lee, and others who've found relief through CB treatment, I am so happy for you!

:)Mel
Title: Re: Alternative therapy update
Post by CHTom on Jul 27th, 2006, 12:00pm

on 07/27/06 at 11:24:29, Margi wrote:
dude. you're naked.  I gotta go.

[smiley=laugh.gif]

sorry, it's the only thing I could think to say to this guy.  I think the clips have come undone from his straight jacket today and he's found access to a keyboard.  God help us all.


I found the little camera that you hooked up to my shower-no more free shows, but I still love you![smiley=heart.gif]
Title: Re: Alternative therapy update
Post by Margi on Jul 27th, 2006, 12:06pm
Flash, I noticed in your post that you said you're taking Benadryl in the morning...just maybe be careful with that.  It CAN promote sleep as a side effect - might not be wise to drive if you're taking it.  Mike takes it when in cycle and he's usually asleep within 20 minutes of taking it and can stay asleep for a good 4 or 5 hours.  Wonderful stuff that benadryl!  

Please do keep us posted on your progress with the seeds.  Mike's been totally med free since last cycle and is "due" again this coming winter.  We will be trying the seeds for him at first twinge, so I'm really trying to learn as much as possible.  

Margi
Title: Re: Alternative therapy update
Post by Flash on Jul 27th, 2006, 2:24pm
Thanks everyone.  I'll take your advice and go with 15 seeds and a 12 hour soak in the event that the activity ramps up any.

Does anyone experience gastric discomfort with the seeds?

Do people strain out the seeds, or do they swallow them, and has anyone tried both?

And finally should I crush the seeds, and if so how ground down should they be?

So far today no hits since the 7am one.  Been drinking gunpowder tea in advance of anticipated hits and it's working.  My total pain score today so far <2.  There is definately something hindering this episode.

***

Don't worry about the troll.  I only take intelligent ones - this one appears to be retarded and not worth my time.

***

Also worth mentioning that so far all my hits (feeble though they may be) have been what I'd describe as clean/classic CH hits, as opposed to dirty hits.  Please allow me to explain because I do not recall seeing much discussion on this:

Clean/classic hit.  These are usually no more than kip 7.  They typically last no more than an hour (unless prolonged by stress), they come on fast, reaching their max kip withing 5-10 mins, then maintain that same kip contantly before fading out over a 10-15 minutes interval.  Afterwards they leave you with what I'd describe as the endorphin haze (not sure this is actually endorphins but feels the same).  This last part is actually quite pleasant and feels sleepy.  These types of attacks are managable.  There is little in the way of shadowing.

Dirty hit.  They can be any kip, but typically drag on for anything up to 3 hours.  They come on a little more slowly, and the kip can vary over the course of an attack.  They take ages to fade out, and never completely go away leaving some shadow activity running in the background.  There is no endorphin feeling afterwards.  It's like kip levels 8, 9, and 10 belongs exclusively to these bastards.  These I REALLY don't like.  These types of attacks are unmanagable.

I notice that I only get dirty hits if I attempt to medicate the CH, especially with OTC analgesic drugs.  O2 rebounds also tend to be dirty bastards.  Notice that if I get one too many dirty hits then the whole episode goes dirty on me and this is hell.

In the event that this does turn into a proper episode then hopefully it will stay clean.  Other than benadryl I haven't taken any medication, for anything, for a very long time.

***

Margi - hope the seeds do the trick for Mike this time.  Seems to me that staying clean and med free is probably the next best option.
Title: Re: Alternative therapy update
Post by nani on Jul 27th, 2006, 2:39pm
I think I know if these "dirty hits" you speak of.  :-/

I grind up the seeds as much as I can. I use pliers with smooth pinchers. I strain with my teeth, so I get some of the powdery stuff and not the chunky parts.
I do know of one person who had a very bad gastric reaction her first time, but each dose has been better. She reacted the same way to her first SPUT, too. She suffers from some complicated digestive issues, though, so she wasn't surprised by it. I've never had a bad reaction to the seeds at all.
pf wishes, nani
Title: Re: Alternative therapy update
Post by pattik on Jul 27th, 2006, 2:43pm
Flash,
Sometimes I will experience a very minor discomfort, but it's not worth mentioning, really.  I don't strain the RC seeds.  The husks are okay to consume.  The HBWR seeds need to have the meat extracted from the husks first though, and don't consume the husks.  Pulverize the RC seeds as fine as you can before soaking, and when you dose,  you can swallow the whole thing--no straining necessary.  I haven't tried straining, but it may improve the stomach issues.

*****

I know what you mean about the gunpowder tea.  It's a great tool for getting to the hits early.  Also,  that "endorphin haze" is really a classic sign for me too.  I think our brains are doing their best to make our own painkillers.  ;)

edited to add:  The "dirty" hit you mentioned was the type which I used an RC seed SPUT for, and found it helpful.
Title: Re: Alternative therapy update
Post by LeLimey on Jul 27th, 2006, 3:37pm

on 07/27/06 at 14:39:56, nani wrote:
I do know of one person who had a very bad gastric reaction her first time, but each dose has been better. She reacted the same way to her first SPUT, too. She suffers from some complicated digestive issues, though, so she wasn't surprised by it.


That was me!  ;;D
I did react badly to both seeds and sputs the first time but all my subsequent dosings that I've used seeds for have produced no reaction at all and I'm certainly not afraid of ever using the shroom sputs again now - not given how fast they worked.. that was incredible! As I said though, with the seeds I had no "reaction" since that first time, not hallucinogenic, not gastric - nothing. Its been like drinking a glass of water in how it affects me now.

I do always drink the lot, I never have strained it and as Nani says, I do have a dodgy stomach too so I tend to think if it won't upset me it won't upset many people.

I usually crush the seeds until they look sort of like ground black pepper if that makes sense.

I feel sort of like I'm telling Michaelangelo how to paint here by the way!
Title: Re: Alternative therapy update
Post by Flash on Jul 27th, 2006, 6:09pm
Well I've never taken anything other than the Liberty Cap shrooms, and prior to that a few tabs of LSD umm 12-13 years ago.  The Liberty Caps should be out again in October - global warming permitting.  If this phantom remains a phantom then I'll wait till then.

Last year I managed to get some shrooms, but I had to search really hard for them.  I picked around 200, which would have done me for a long time, but then I let my wife convince me that... dun dun dun... they would dry better in the oven.  This was completely against my instincts which were to use the tried and tested cold air fan method.  Anyway she convinced me, and we returned home 6 hours later to the stench of burnt mushroom, and a few lumps of charcoal stuck to the baking tray.  Hence I don't have much medicine stored up this year, and had to buy seeds.  The 3g of shrooms are a couple of years old, and one of the last legal batches of cubensis sold in the UK.

So far today no more hits.  Just going to have a cup of green tea befoer bedtime.
Title: Re: Alternative therapy update
Post by MJ on Jul 27th, 2006, 8:30pm
Hi Flash.  Sounds like good experience coming at you from those who know.
Maybe I can help as well to return the aid you gave to me in the past. In response to your questions here is my experience.

For others reading this please look here for warnings and other info and understand  that Flash is one of, if not the first to bring the mushroom therapy to light  http://www.clusterbusters.com/faqlsa.htm

Flash says "Thanks everyone.  I'll take your advice and go with 15 seeds and a 12 hour soak in the event that the activity ramps up any."
      I think 15 seeds is an acceptable starting point if your mind and health is good. My experience however found that higher doses of seeds say beyond 20 have no greater value and once dosed an even lower dose may be more beneficial than increasing the dosage a 2nd time.
 Secondly I personally dont think the length of soak makes that much difference beyond a few hours.

"Does anyone experience gastric discomfort with the seeds?"
         No discomfort but the seeds make an excellent source of fiber and will help to keep one regular. Some reading I did a while back indicated that the seeds were actually used to treat gastric and intestinal issues in the days gone by.

"Do people strain out the seeds, or do they swallow them, and has anyone tried both?"
            I have tried both ways and a higher benefit is had by swallowing the whole thing

And finally should I crush the seeds, and if so how ground down should they be?
     The finer crushed the better absorbtion. In water a rough crush seems ok. I prefer the sublingual method  and try to crush them to the consistency of a finer  powder. I do this simply by crushing the hull with serrated pliers and grinding them up between my fingers.
(powdered not soaked and absorbed under the tongue given beneficial effects can be obtained in 15 minutes or less)

"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 I have taken higher doses to as many as 75 seeds but no added benefit was had. The effects were I got a bit spaced out but felt fine. I dont reccomend the higher dose and would not consider it even recreationally if I did that sort of thing. All the CH benefit was obtained below 20 seeds with no discernable effects. I wouldnt have a problem visiting with my mother at lower doses.
At the lower doses I found the seeds to be a great aide to sleep and recomend dosing before bed for a more restfull night. If taken during the day expect some sleepiness. Similar to what you may feel on tylenol or ibuprofen.
Initially a slight tingling in the extremities may occur even with low doses.

I see no reason why you should wait to see if CH gets worse.  

Some distinct differences between shrooms and RC seeds for me are;

 I dont believe the 5 or 7 day wait is relevant between dosing with seeds as it is with shrooms. Can be used on a daily basis for better control. (I'm sure someone will argue this point)

 I never ever experienced the visual distortions or hallucinatory effects that are found with shrooms.

 Like shrooms the seeds can be used sublingually 3-5 seeds as an abortive as well as a preventive but seeds for me require an initial larger dose 10-15 seeds within the past 20 hours or so for the lower dose to be beneficial.

 
Title: Re: Alternative therapy update
Post by Flash on Jul 28th, 2006, 9:59am
Thanks folks.  The main reason I am waiting is to be sure I make a confirmed kill, so that we can legitimately claim it as a scalp.

The other reason is that it gives me a chance to play around with the CH a bit in the meantime, and possibly learn some more.

Yesterday so no further activity.  Last night I got hit twice, at roughly the same times as before, both at Kip2, and both aborted after approx 20 mins with green tea.  Todays pain score so far = uh <1!  Unfortunately as these attacks occured right on the benadryl borderline, it has not been possible to rule out benadryl as excerting a positive influence.

This leads me to some potentially useful information, and it would be nice if some other people would help me test another little theory.  In order to help you have to be med free.

I have long harboured a theory that it is possible to manage CH to some extent without any medication.  This is really useful for people attempting the shrooms or seeds because it may provide some intermediate relief.

My attacks can usually be aborted within the first 5 minutes if I undertake one or more of the following activies:

Go to sleep.
Wake up.
Eat.
Drink.
Exert myself.
Shit / piss.

I have noticed that attacks are likely to occur if I stay up too late, sleep in too long, go hungry, go thirsty, am bursting for the toilet, or not getting any exercise.

By sleeping regular hours, eating regular meals, walking my 10,000 steps per day, and visitng the bathroom when needed it has been possible to reduce the frequency of attacks.

So I got to wondering whether all attacks signified a need, whether that need was in fact justified.  So whenever an attack occurs I check my current state, then take all possible courses of action within the first 5 minutes... and it always aborts.

For instance, if I am sleeping, then the attack will usually come during the REM phase, so as soon as I become aware of the hit I wake myself up, get out of bed, put on the lights, start the kettle boiling, visit the bathroom, and in the process have to rush round to do all this ASAP.  Then I make a cup of green tea, eat a light snack, and then just keep myself altert and concious until the attack ends, usually withint 10-20 mins.  Then I go back to sleep.

If I am awake, then I check to see how long since my last meal, and whether I am thirsty.  Then visit the bathroom if necessary, eat, drink, and shut my eyes.  agin the attack fades out in 10-20 mins.

I have found that if I fail to take these courses of action then subsequent attacks become more painful, as if the beast is ringing the bell louder.  

So to summarise:

Get regular sleep, not too much, not too little.

Take daily exercise, walking 10,000 steps is good.  Can be done is 2 stages.

Eat regular meals.  In fact I'd recommend 6 small meals.  Even a slice of toast can count as a meal.

Drink plenty of water, but not too much.

When an attack comes, check current status and take all possible evasive action.

Always act within the first 5 minutes is at all possible.  Sometime you get a little longer.

Waking up in the middle of the night with an attack, turning on lights, eating, drinking etc goes against the grain, but trust me it really does work incredibly well.  I am sure that eating and drinking must have some sort of effect on serotonin levels.

A good time to test this out is at the start of an episode.  This way it might be possible to prolong the manageable state with low daily pain scores until such time as it becomes necessary to take the shrooms or seeds.
Title: Re: Alternative therapy update
Post by Margi on Jul 28th, 2006, 10:28am
There's a lot to what you say here, Flash - especially the waking up and GETTING up part if you get hit in the night.  Not only by eating, etc., but by turning the lights on I would think that you're screwing enough with your circadian rhythm to jumpstart your seratonin.  Doesn't the brain start to change production of seratonin when it gets dark?  So what if it scares the hell out of your supporter when you suddenly flood the bedroom with light?  We will understand!  ;)

And, I think you're really right about walking on eggshells and not upsetting your eating, sleeping, exercise, uh...cleansing schedule too.  Mike's the same way, if he gets too hungry or has to pee too bad, he'll get hit.  I think you're in such a delicate balance while you're in cycle that any little deviation will upset the applecart.  It's like your body is doing everything possible to battle the beast, it just doesn't have the energy to fire fight other battles if YOU screw up and let it get too hungry or too full.  

About your 10,000 steps....how do you measure that?  Podometer?  Or do you just know how far that is and walk it every day?  Sorry, honest question here...just wondering.  

Flash, do you not use Oxygen to abort?  

So sorry to hear that you overcooked your pickings.... bet that smelled real nice when you came back home and I'm sure that's damned demoralizing to realize what you'd lost.  But look at it this way, had that not happened, you wouldn't be able to test out the seeds now and potentially be able to add another weapon to your arsenal.  

Hope the seeds do the trick for you.
Title: Re: Alternative therapy update
Post by Flash on Jul 30th, 2006, 8:33am
Friday was the worst day so far.  A pain score of 6.  Oooh how do I cope LOL?

Since then nothing but a couple of threats, one was even aborted by going outside for fresh air.  Last headache was on Friday night at 0130-0230.  Pain score for Saturday was 0.25.
Title: Re: Alternative therapy update
Post by Flash on Jul 31st, 2006, 12:33pm
Nothing from 0230 Friday until 0500 Monday.   Then hit with a Kip4-5 which I attempted to sleep through, just to see what would happen.  Headache was still persisting after 30 mins full force, and possibly hardening.  Got up, had a pee, and drank a cup of green tea.  Headache terminated cleanly within 10-15mins.  While sleeping was aware of a low level attack of short duration, not sure what time this was.  Then hit a Kip5 at 1330 today whilst interviewing people.  Reckon this was down to needing my lunch, but had to complete interview.  Managed to temp escape and brew some more green tea at 1400, headache then restreated to Kip1 within 10-15 mins enabling me to conclude the interview, although I did end up soaking with sweat.  Walked 1 mile round trip to supermarket and bought lunch, the Kip1 still persisting, then consumed lunch and the Kip1 terminated within 10-15 minutes.

So pain score for today so far is 11.  Not a good day relatively speaking, but remember that my record is 196...  Really starting to rely on the green tea.  So far it has not failed.
Title: Re: Alternative therapy update
Post by Flash on Jul 31st, 2006, 12:37pm
All this leads me to question whether the green tea is effective.  I see several possibilities:

1) Coincidence.  It could be that I keep happening to drink the tea 15 mins before each attack is due to terminate.  However i have varied the timing of my intake from within 120 secs to after 30 mins and each time it's worked.  Pretty big coincidence.

2) Drinking anything would help.  Quite possibly, and I need to test this out.  The waterx3 theory would back this up.

 
Title: Re: Alternative therapy update
Post by Margi on Jul 31st, 2006, 1:57pm
Craig, unless you're drinking de-caf Green Tea, I'd say the vasodilative properties of the tea are helping blow the attacks away for you, no?  I've always heard that tea has a higher caffeine content than coffee but that could just be good old Canadian Red Rose Tea.  

I don't think the waterx3 would be a good comparison because the required water in the amounts recommended by Doc Jerry in that treatment do wash out all your salts, so it wouldn't be a fair comparison.  Maybe drinking ONE glass of water but not all the water you need in that method....

I've just quickly gone back through this thread...have you not yet dosed with the seeds, then - still just doing this "med" free?  If so, are you still planning on trying the seeds?
Title: Re: Alternative therapy update
Post by Flash on Jul 31st, 2006, 7:06pm
Green tea, especially the ones based on gunpowder tea contain virtualy no caffiene or tannin, just loads of nutrients.  

But yes regular black tea would be high in caffiene.

So far have no taken the seeds.  Am waiting to see if things get bad.  We learn more about this condition whilst unmedicated.  And after all I went many years without ANY medication, so can do this standing on my head.  In all honesty I do believe that most OTC and prescription meds make it worse.  Analgesics like aspirin, paracetomal, and iboprufen make it MUCH worse.  Not sure what their brand names are in the US though.

You ever notice that the people worst affected are the ones on most meds?  Personally I put that particular egg BEFORE the chicken!

Will post here if I need to take the seeds.

If anyone else fancies testing out the tea, then I'd advocate doing so whilst med free otherwise any results are close to worthless.  Todays final pain score was 12 1/2.  Ouch, totalled up that's almost like one decent hit then LOL.

EDIT:  Oops added the pain score up wrong last night, it's 12 1/2 not 7 1/2!
Title: Re: Alternative therapy update
Post by lashultz on Jul 31st, 2006, 9:48pm

on 07/27/06 at 14:43:28, pattik wrote:
 The HBWR seeds need to have the meat extracted from the husks first though, and don't consume the husks.


I just got some HBWR seeds. How do you extract the meat from the seeds? How many do you normally take? How long do they soak for?

                         Thanks, Lee
Title: Re: Alternative therapy update
Post by pattik on Jul 31st, 2006, 10:21pm

on 07/31/06 at 21:48:11, lashultz wrote:
I just got some HBWR seeds. How do you extract the meat from the seeds? How many do you normally take? How long do they soak for?


Hi Lee,
Extracting the meat from the husks can be challenging.  One buster has had some success using a pill-splitter, like the kind that can be found at most drugstores.  The Clusterbuster site recommends starting with just one seed.  HBR seeds may be 4 times more potent than the RC seeds, but the coating cannot be ingested.  Soaking for 2 hours in water should be sufficient.  Below is a link to the LSA FAQ page which you need to read completely.  It will guide you regarding detoxing first, length of time between doses, how to gradually increase the dose, what to expect, etc.  This information is vital to get any success, and it would also be a good idea to keep a headache diary
to see if dosing with seeds makes a difference for you.
If you still have questions, there are folks here who can guide you in more detail, or feel free to PM me with any other questions.  

http://www.clusterbusters.com/faqlsa.htm

Patti
Title: Re: Alternative therapy update
Post by Flash on Aug 1st, 2006, 4:12am
I thought the equivalence was 8xRC = 1HBW which is correct.

Todays pain score so far =4 1/2.  Green tea still working.  Showing Horner's sign big time now, especially whilst shadowing.
Title: Re: Alternative therapy update
Post by LeLimey on Aug 1st, 2006, 5:35am
Hi Lee! (LASchultz NOT Ting Tong  ::) )
The only thing I would add is to urge you to contact Andrew Sewell before dosing so he can add you to his database, you were there when he was speaking and I know you know how important it is for him to get as much anecdotal evidence, preferably before people commence treatment as possible.
Thanks
Helen
Title: Re: Alternative therapy update
Post by vig on Aug 1st, 2006, 9:34am

on 07/31/06 at 22:21:02, pattik wrote:
Extracting the meat from the husks can be challenging.  One buster has had some success using a pill-splitter, like the kind that can be found at most drugstores.  The Clusterbuster site recommends starting with just one seed.  HBR seeds may be 4 times more potent than the RC seeds, but the coating cannot be ingested.  Soaking for 2 hours in water should be sufficient.

http://www.clusterbusters.com/faqlsa.htm

Patti


I've had 2 batCHes of HBWr seeds and one was easy to split with scissors, and the meat fell out.  The other batCH was splittable, but I couldn't separate the meats from the shell, so I mortar'd and pestle'd them into a fine mush and soaked them in Lemon juice for an hour or two.  (this made them FAR more potent than when I did it in water, CHemists?  anyone know why?)  
But with the coating, it was muCH more harsh on my stomaCH.  I did 10 seeds with two doses a month apart and have not had a CH in almost 8 weeks.
;;D

This one shows a few seeds cut in half with decent scissors:
http://www.geocities.com/paul_vignola/HBWrSeedsDime.jpg

Close up of one GOOD seed:
http://www.geocities.com/paul_vignola/HBWrSplit.jpg

unCHopped seeds:
http://www.geocities.com/paul_vignola/HBWrMeats.jpg

CHopped seeds:
http://www.geocities.com/paul_vignola/HBWrMeat18s.jpg
Title: Re: Alternative therapy update
Post by javi_spain on Aug 1st, 2006, 9:45am

on 07/31/06 at 19:06:43, Flash wrote:
... I can do this standing on my head ...


That is a very bad example ;;D  
Title: Re: Alternative therapy update
Post by Carl1958 on Aug 1st, 2006, 9:55am

on 08/01/06 at 09:34:06, vig wrote:
so I mortar'd and pestle'd them into a fine mush and soaked them in Lemon juice for an hour or two.  (this made them FAR more potent than when I did it in water, CHemists?  anyone know why?)  


Hello Vig, (Great post)
              Lemon juice alters the PH of water (It lowers It ). It may have also helped to flush out the toxins within the HBWR seeds.

Just a thought.

TC CArl.
Title: Re: Alternative therapy update
Post by Margi on Aug 1st, 2006, 9:57am
Flash, wholeheartedly agree that we do learn more about cluster while unmedicated.  SO true and, I know, so easy for me to say being a non-clusterhead.  Just wanted to publically agree with you on that one.

Gunpowder tea....do the leaves really "explode" when the boiling water hits them?  There really could be something to it, Craig, lots of health benefits from gunpowder (and most green) tea.  Check this out:

http://wellbodybook.com/nscn/teas/antioxidant-teas-gunpowder.html

Another article I read indicates that it also helps with MS - which is a myelin sheath deficiency, right?  Didn't we go there a few years ago and study the connection of myeline sheath problems to CH?  Maybe I'm dreaming, I dunno, but I do seem to remember something about this.  This article says that gunpowder tea does contain caffiene but maybe you're getting decaf?  Wonder if the caffienated stuff would speed up the abort for you?
Title: Re: Alternative therapy update
Post by Kevin_M on Aug 1st, 2006, 4:47pm
After getting off all medication for a week and an intial high dosage (I'm not recommending) of husked HBWR seeds, I got almost five days pf.  Thereafter, with HBWR sufficiently cleaned, a three seed soak for two hours would keep me pf for 6 hours at a time, which I continued for several weeks but the pf time began shortening so went to four but was less comfortable.
 A three seed soak was comfortable with anything I did, like at work and all.  Some digestive discomfort may have come from the difficulty in getting them as clean as possible.  
That's just the way it worked for me.
Title: Re: Alternative therapy update
Post by Flash on Aug 3rd, 2006, 5:01am
Margi, yes it does contain a small amount of caffiene but I believe this to be negligible compared with regular tea or coffee.  It's not decaff - not even sure if that is available here.

The 2nd of August passed with barely a whimper.  A kipless night LOL, and 2 hits during the day aborted quickly with green tea.  Lets call it a total pain score of 1 for the day.  So began thinking I was home free.

So onto the 3rd... hits at 3am, 5am, and 7am this morning.  Was getting hard to drag myself out of bed for some tea.  All occurred during REM phase, because they intruded on the dreams.  The 7am hit was the worst because I let it drag on for maybe 20mins before getting the tea made.  I'd rate this as a good solid Kip 4, and it ended up lasting 35 mins.  Again I'm fairly sure that the tea played a big part in aborting all 3 attacks.  

So pain score so far today is 5.

If I can attribute the increase in activity to anything, then it's that we had steak last night which was marinated in balsamic vinegar.  This is possibly too close to alcohol, and red wine in particular for comfort.  But then again no way of knowing for sure.  Today I'll eat very bland food and see if I get less hits.
Title: Re: Alternative therapy update
Post by Bob P on Aug 3rd, 2006, 10:00am

Quote:
1: Acta Neurol Scand 1986 Apr;73(4):403-7

Onset of nocturnal attacks of chronic cluster headache in relation to sleep
stages.

Pfaffenrath V, Pollmann W, Ruther E, Lund R, Hajak G

Nocturnal attacks are symptomatic of numerous primary headache syndromes. It has
proven possible to verify, with polygraphic sleep recordings, a strict
correlation between the onset of headache attacks and the rapid eye movements
(REM) stage for migraineurs, patients with chronic paroxysmal hemicrania and
cluster headache (CH). The purpose of this study was to investigate the
correlation between attack onset of chronic CH and sleep stages, the REM stage
in particular. Nine patients from our headache outpatient service with a
diagnosis of CH were examined in this study. All medication was discontinued at
least one week prior to sleep polygraphias, which were conducted in a sleep
laboratory on two consecutive nights. Any attacks were treated with oxygen
inhalation during the drug-free period. EEG, EMG, and EOG were continuously
monitored during the sleep polygraphias. Eight patients had 25 CH attacks during
12 of the 17 nights recorded. Only three of these patients had arousals with
attacks in the REM stage and these amounted to five of the 25 recorded attacks.
Eleven attacks were in stage 2, four in stage 1 and two in stage 3. These
results correlate with recent findings according to which headache attacks were
often related to REM in episodic CH, but rarely in the chronic type. Whether or
not different pathogenic mechanisms are involved in the episodic and the chronic
type of CH is a matter for further discussion.

PMID: 3727916, UI: 86264444

I always find it interesting that chronics and episodics are so different.
I was flabergasted when I saw chronics drinking alcohol at the Las Vegas convention and they didn't get hit!
Title: Re: Alternative therapy update
Post by Margi on Aug 3rd, 2006, 10:05am
So true, Bob - I think chronic and episodic truly are two different beasts in a lot of ways.

Flash, did you happen to put seasoning salt on your steaks?  I'm not sure what brand it would be marketed as in Scotland but here, it is Lawry's Seasoning Salt.  Real high MSG content in that stuff and it's a trigger for Mike every time while he's in cycle.  

Sorry to hear you had  a rough night.  
Title: Re: Alternative therapy update
Post by Linda_Howell on Aug 3rd, 2006, 12:49pm


Quote:
I always find it interesting that chronics and episodics are so different.
I was flabergasted when I saw chronics drinking alcohol at the Las Vegas convention and they didn't get hit!


It is just one of the very minor "upsides"   to being chronic Bob.  :-/

Linda
Title: Re: Alternative therapy update
Post by rickyshot on Aug 3rd, 2006, 8:00pm
This thread is the greatest. I am a virgin to busting. I spoke with someone who busts at the convention and got a lot of info. Went to the clusterbusters site and I ordered my HBWR seeds. I am ready to do this.
Vig your pix are the greatest so helpful to me. Thanks a million. I will let ya'll know how it will go for me.

And yes Margi Episodic and chronic seem to be different. I always could not understand how someone could function being chronic. But many people told me that being episodic can be worse. Not going into that one. I don't know.

Incidentally for those of you who do not know me, I also suffer from chronic very very complicated migraines and sometimes the ch and migraines at the same joyful time. I understand busting is indicated for migraines too so I am excited.

Finally I want to add my comment on traditional meds. I too believe that a lot them although sometimes seeming to help actually makes the long run worse. As usual informed decisons are needed and this whole CH site has literally saved my life.


THANK YOU THANK YOU THANK YOU.
Title: Re: Alternative therapy update
Post by kcopelin on Aug 3rd, 2006, 9:21pm
I ordered 2 packs of HBRW seeds-none of them looked like that-they were basically dark brown or black and didn't do a thing-I suspect that the advertised "98% viable" did not apply to the ones I got.
kathy
Title: Re: Alternative therapy update
Post by Flash on Aug 4th, 2006, 9:08am
Yesterday saw the beast make a couple of attempts but I easily succeded in fending it off until 11pm.  Was watchina movie and the beast seemingly decided it was past my bedtime.  The hit came on slowly, and I ingested the tea early but it didn't make any difference.  In the end the solution was to lie down in dark room, by this stage the attack had been going 45 mins and was into kip 6, meaning that I was finding it hard to tolerate light (CH has always made me photophobic from level 6 through to 10).  15 minutes of thrashing around on the hallway floor in the dark saw the hit subside, and made my way to be thereafter.  Fuck you beast I can take much more than that so bring it on.

Final pain score for yesterday stands at 11.

Then slept through without incident until 0730 when the beast decided I had to get up, piss, eat, and drink.  So I did and the attack was aborted in 15 minutes.  Then stupidly I went back to bed.  Had another 2 hours sleep (which truth be told was unnecessary), and then woke up at 0930 with the harbringer of a high kip attack.  You know when the shadow clamps itself tight over the whole of the  CH side of the head, from neck and jaw through all the teeth past the temple and right up to the top?  Where everything feels tender, and even blowing the blocked nostril is unpleasant.  Where your head feels like a ticking bomb?  Well that...

So I got up again, had the tea, ate breakfast, still no joy.  Then had a shower, this helped a lot.  Then got shaved, dressed and drove to work.  By this time it was alsmost baseline, then at 1150 it started to fire up again, so I walked to the shops and bought lunch, this is about 2/3rds of a mile round trip, and that cleared it.  Then I ate lunch, and it pegged back again.  It's now 1400 and no hit has materialised, but the head is still feeling a little touchy.

So far we'll call today 4.  

***

Bob - well I take heart from that REM detail because it would indicate that I am STILL as ever episodic, and that's a big boost, because it ain't over till it's over!

So far only last nights hit has failed to be impacted by the green tea, and it certainly seemed to be a GO STRAIGHT TO BED AND SLEEP type hit.  BUT I'm still not convinced that it's the tea in particular as opposed to just drinking something hot and steamy.  To test this I added some cold water to a couple of cups, and they didn't seem to work as well.

Still haven't taken any meds.  I'm hanging on until they get really good/bad then going to have Laura video me for posterity.  Also going to try and ride out this episode without any meds, just to see how well it can be managed.  Then in September I'l pick some shrooms and go back to maintenance doses and give myself a few years off CH.

If anyone would like to join me in this experiement on whether CH can be managed without meds.  Then the only stipulation is that you are med free for 1 month going in.  If you check my pain scores to date then you'll see that there's nothing much to fear.  Contact me if you're interested.  This is ideal for someone that's a little too nervous of shrooms, but is dissallusioned with conventional medication.
Title: Re: Alternative therapy update
Post by vig on Aug 4th, 2006, 11:00am

on 08/03/06 at 21:21:30, kcopelin wrote:
I ordered 2 packs of HBRW seeds-none of them looked like that-they were basically dark brown or black and didn't do a thing-I suspect that the advertised "98% viable" did not apply to the ones I got.
kathy



I had ordered a second pack a few months ago and 'upgraded' to the 98% viable seeds too:

http://www.geocities.com/paul_vignola/10HBWrMay27cropped.jpg

Not as pretty, but ironically, I found them to be MORE potent than the ones that had the white with black dots in them.
I can't explain it.
Title: Re: Alternative therapy update
Post by LeLimey on Aug 4th, 2006, 11:09am
Anyone wanting to read further instalments of Flash's diary can do so here (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1154701446)
Title: Re: Alternative therapy update
Post by PaulL on Aug 6th, 2006, 10:07pm
A little late to the party here.  I've used HBWR for about 2 years starting with the tail end of a very nasty cluster.  The following method of preparation has been quite successful for me.  Grind up 3 to 4 seeds (without bothering to husk them) in an electric coffee grinder, soak the dust in some cold water for two hours, filter through a paper coffee filter, drink.  That's it.

It makes me a bit sleepy about an hour after drinking.  I usually do this on an empty stomach in the morning and wait an hour after dosing before eating.  I've never had an upset stomach.

I tried the RC seeds and got very nauseous on the equivalent dose, about 20 seeds.  Back to the HBWR seeds after that experience.

Now that I've learned that it works to kill off CH, I buy a fresh supply of the 95% viable HBWR seeds every six months and keep it in the vegatable drawer of the fridge.  It's not worth the $5 saved to bother with anything else.
Title: Re: Alternative therapy update
Post by rickyshot on Aug 7th, 2006, 8:34am
Paul thanks for the tips. I am waiting on my first supply. So can you share us the details on how it has worked for you. Is it longer between cycles. Does it break a cycle. Good relief?

Thanks for your reply
Title: Re: Alternative therapy update
Post by seasonalboomer on Aug 7th, 2006, 9:42am

on 08/07/06 at 08:34:35, rickyshot wrote:
Paul thanks for the tips. I am waiting on my first supply. So can you share us the details on how it has worked for you. Is it longer between cycles. Does it break a cycle. Good relief?

Thanks for your reply


one additional tip....wipe out coffee grinder of dust and residue after grinding  
:-/

scott
Title: Re: Alternative therapy update
Post by shemp on Aug 8th, 2006, 1:44am
Newbie here -  
Episodic CH sufferer for about 17 years - 6 week cycle every other year.
I posted to this website a few years back during a bad CH episode.  Now, I'm at the start of another cycle and am very interested in the "seed treatment".  I had no idea about this option!  I would like to see if it will stop the upcoming cycle.  I've read enough to know how to prepare and consume the seeds (either RC or HBW), but am unsure as to where to get them in the U.S..  Can anyone make a recommendation?  The couple internet sites I checked out were outside the U.S.
I did have positive results using the shroom therapy in the past, but I don't have any, don't want to grow them or buy them as the illegality issue makes me nervous.
There is so much more info on this website than there was a couple years ago!
Thanks
;;D
Title: Re: Alternative therapy update
Post by Carl1958 on Aug 8th, 2006, 1:59am
Hello Shemp,
                   try here my friend,

www.clusterbusters.com

they will help with the pain.

Be well.

CArl.
Title: Re: Alternative therapy update
Post by LeLimey on Aug 8th, 2006, 6:06am
Hi shemp!
Nice to meet you.
Have a look at www.iamshaman.com
Its a US site, I've ordered from it myself for delivery to here (UK) and also to send to others in the US. Delivery is fast and they're reliable.
One more thing, if you are planning on using the seeds would you consider contacting Andrew Sewell at Harvard? The more data he has on efficacy (or not) the better for when trials into psilocybin etc go ahead. You'd be helping yourself and all of us too! IM me if you would like further info, I won't post email addresses where spammers can get hold of them.
Hope that helps! If you need any more help please say
Take care
Helen
Title: Re: Alternative therapy update
Post by shemp on Aug 8th, 2006, 3:10pm
Thank you guys for the reply -  :)
I'll post my results and consider contacting the individual you mentioned, who is doing the trials.


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