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New Message Board Archives >> Medications, Treatments, Therapies 2005 >> no longer chronic
(Message started by: miapet on May 26th, 2004, 1:04pm)

Title: no longer chronic
Post by miapet on May 26th, 2004, 1:04pm
As many of you know, D has been a chronic CH sufferer for about the past 20 years.  A few months ago, I came here because we were in trouble.  The beast was whacking us every hour . . .and it just wouldn't stop.

I want to report:  D it is official.  D is no longer chronic.  Today is the day that we can say it . . .we have went the 14 days with no h/a.  In the 10 days prior to this, he had 1  h/a, more of an annoyance really.  The past 24+ days have been like an entirely  new life for us.

We wish to thank The Clusterbusters for all of their help, encouragement, and guidance.  D dosed twice (1.5g each time), both times in April.

For anyone considering this therapy . .we highly encourage it.  For you chronics:  there is hope . . .we are living, breathing, and walking proof.

I would also like to thank the people here, for their encouragement and support.
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by thomas on May 26th, 2004, 1:11pm
AWESOME NEWS!!!!!!!

Title: Re: no longer chronic
Post by floridian on May 26th, 2004, 1:25pm
Glad to hear it.   :D  :D  :D

Title: Re: no longer chronic
Post by Giovanni on May 26th, 2004, 1:56pm
YEA for *D*and Mia!!!

Mia, D was completely medication free when did this therapy wasn't he?

So happy for the both of you,

John

Title: Re: no longer chronic
Post by miapet on May 26th, 2004, 2:03pm
Thank you all for your congrats *smiles*

Yes, D was med free.  Many years ago, he tried almost everything the docs wanted him to try . . .we now have high b/p to deal with (and believe it is a direct result of the medications), so we try to stay away from pharmacy.  He did do a prednisone taper over Mardi-Gras, and used approximately 15 Cafergots (while waiting for our o2 script to go through) and then we stopped.  We knew that the prednisone hadn't worked, and that the cafergot wasn't working (needed to take them way more often than was safe).  SO, we got the o2, and then did the alternative . . .we were clean for several weeks . . and had been clean for years before that.  Nothing ever worked for us before . . .until now.  We will never live our lives revolving around the beast again.  
mia

Title: Re: no longer chronic
Post by notseinfeld on May 26th, 2004, 3:06pm
Schwing, Thump!

Best news I've heard all week!

Congrats and continued success.


nots

Title: Re: no longer chronic
Post by 9erfan on May 26th, 2004, 4:10pm
WOOHOO!!! CONGRATULATIONS!!!! THIS IS THE BEST NEWS!!

YOUR PERSISTENCE PAID OFF! YAY!!!!

;;D ;;D ;;D ;;D ;;D

I couldn't be happier for you both, this gives me hope!

V.

Title: Re: no longer chronic
Post by Superpain on May 26th, 2004, 5:37pm
Awesome!

Title: Re: no longer chronic
Post by Flounder on May 26th, 2004, 10:47pm
See, I told you so! hehehe. [smiley=laugh.gif]

That's Kick F'n Ass you guys!
We'll have to get together for a BBQ or somethin
to celebrate!

Title: Re: no longer chronic
Post by FZfan on May 26th, 2004, 11:09pm
Outstanding news mia. I'm so happy for you and D. He must be turning cartwheels. He owes you a great deal for all you did to help pull this off. Congratulations.

Title: Re: no longer chronic
Post by boriskaz on May 27th, 2004, 6:57am
CONGTATULATIONS FOR YOUR NEW LIFE!!!

I didn't get what D actually did....what is it that you did and how exactly...? Please let us all in on your secret...

Title: Re: no longer chronic
Post by 1MajorPain on May 27th, 2004, 10:18am
Great news Mia!!!!!!! Glad that both "D" and you have finally gotten your life back, wishing you both all the best.

Major

Title: Re: no longer chronic
Post by Giovanni on May 27th, 2004, 10:40am

Quote:
Posted by: boriskaz
I didn't get what D actually did....what is it that you did and how exactly...? Please let us all in on your secret...


See:

www.clusterbusters.com


Title: Re: no longer chronic
Post by Edski_1 on May 27th, 2004, 2:28pm
No secret really, just that some governments would rather restrict potential meds due to myopic drug laws.

Another example of how stupid this country's (USA) general attitude is towards these things! :p And another example that this treatment is effective.  I've already informed my wife that when my CH return (hopefully I get more than a few years reprieve like last remission) this is what I'm going to do.  Topamax worked great at getting rid of the pain, but this "alternative" only makes you stupid for a few hours or so...not make you stupid forever, which is the main SE of Topamax.

Great News!!!!

Title: Re: no longer chronic
Post by miapet on May 29th, 2004, 3:39pm
Thank you all for your well wishes!  Sorry for the long delay in my response (puter issues).

I'm so glad I came here, and read and read and read, and asked questions and more questions and more questions, AND that so many wonderful people shared their experiences and knowledge!

Flounder, yes you were! and yep, we sure do!

John, you're an angel!

FZ . . .you've always been here for us!

Major .. . you too are an inspiration!

Everyone else . . .sorry I'm not naming y'all, but sheesh, there's a char limit prolly, and I don't want people to think I'm one of those long-winded people *L*

9er, I'm glad if we can be an inspiration to even 1 . . .and we are firm believers!

Edski, read the clusterbuster site, you don't need to wait until you are getting hit . . we didn't have a choice.

We have been given a new lease on life .. .we're doing things again!  AND, D looks at least 10 years younger with the beast off his back!

*positive light and energy*
mia

Title: Re: no longer chronic
Post by miapet on Jun 3rd, 2004, 11:12pm
We have passed the 3 week mark of being p/f . .. how cool is that!!!
*positive light and energy*
mia and D

Title: Re: no longer chronic
Post by Giovanni on Jun 4th, 2004, 8:46pm
Hey Mia,

Way too cool...........!

Keep the reports a'comin.  Hope D appreciates all your efforts.

John

[smiley=lick.gif]

Title: Re: no longer chronic
Post by miapet on Jun 9th, 2004, 2:24pm
We just hit the 4 week mark!!! *happy dances* still p/f.
*positive light and energy*
mia

Title: Re: no longer chronic
Post by echo on Jun 9th, 2004, 5:07pm
Fantastic news on the 4 week reprieve!

Title: Re: no longer chronic
Post by Giovanni on Jun 9th, 2004, 5:48pm
[smiley=thumb.gif]


John

Title: Re: no longer chronic
Post by Flounder on Jun 10th, 2004, 1:28pm
;;DWOOHOOO;;D

Title: Re: no longer chronic
Post by Gator on Jun 10th, 2004, 2:28pm
Great news, Mia.  May your lives remain pain free!

Title: Re: no longer chronic
Post by Pinkfloyd on Jun 10th, 2004, 6:19pm

on 06/09/04 at 14:24:18, miapet wrote:
We just hit the 4 week mark!!! *happy dances* still p/f.
*positive light and energy*
mia


Really? Wow...
What was it again that actually broke a chronic cycle? I didn't think there was anything that could break a chronic cycle.

Just plain weird.  ;)

PF

Title: Re: no longer chronic
Post by miapet on Jun 13th, 2004, 10:04pm
hehe, well, if i could knew how to do that quote thingy, i would quote pinkfloyd's question about what exactly it was that broke a chronic's cycle . .since i haven't tried (and am a techno-tard) i just typed that *g*

Here's what we did:
In April, totally medication free, getting slammed, but using o2, D dosed with 1.5g of mushis, 2 weeks later, we dosed again with 1.5g, and we are now almost to the 5 week mark of being p/f.

Clusterbusters ROCK!
*positive light and energy*
miapet and D
edit:  btw, i watch him like a hawk, for any of the signs of the beast/shadows/etc . . .so far, so good *Smiles*

Title: Re: no longer chronic
Post by Gator on Jun 14th, 2004, 2:04pm
That is really great news.  With all the documentation from people who are using this method with such a great deal of success, you'd think doctors would be prescribing it by now.  Unfortunately, they seem to have more faith in man made cures than in nature's own natural medicine.  That and they probably get kickbacks from the pharmeceutical companies.

If my doc doesn't come up with a solution quickly, I may have to try this.

Gator

Title: Re: no longer chronic
Post by Rock_Lobster on Jun 14th, 2004, 4:36pm
Looking for pins!

Wrokk!

Title: Re: no longer chronic
Post by Pegase on Jun 14th, 2004, 8:28pm
THAT IS A GREAT NEWS... WOW... Im so damn happy [smiley=laugh.gif]

Pegase

Title: Re: no longer chronic
Post by miapet on Jun 15th, 2004, 4:21pm
Gator, there is actually medical research starting, at Harvard, on the efficacy etc of this treatment!  

Wrock . . .you rock *g* . . .find THEM!

Pegase, thank you so much, we couldn't be happier either!

We are now at the 5 week mark, it will be official in a few hours (I usually post updates on Wednesdays, but we are going out of town *g* . .and gosh, it feels good to know that we can!)

*positive light and energy*
miapet and D

Title: Re: no longer chronic
Post by Giovanni on Jun 15th, 2004, 8:04pm

Quote:
Posted by Gator:  .
If my doc doesn't come up with a solution quickly, I may have to try this.



Please do Gator, I've been basically pf since June 14, 2003, having avoided a certain 4.5-5.5 month cycle.

John
:)

Title: Re: no longer chronic
Post by miapet on Jun 19th, 2004, 5:27pm
WOO HOO JOHN!!! congratulations!!!!!!!!!!  I love reading the words PAIN FREE!!!!!!!!!!!!
(we still are!)
*positive light and enregy*
D and miapet

Title: Re: no longer chronic
Post by miapet on Jun 24th, 2004, 11:05am
6 weeks, and still p/f . . .its wonderful!
*positive ight and energy*
D and miapet

Title: Re: no longer chronic
Post by Flounder on Jun 26th, 2004, 9:05pm
((((((Beautiful)))))) ;)

Title: Re: no longer chronic
Post by miapet on Jun 29th, 2004, 5:23pm
*HUGS* flounder . . .thanks!

well, i'm a few hours early for the report .. .but what the heck, i'm doing it now anyway!

7 weeks pain free!!!

*positive light and energy*
D/miapet

Title: Re: no longer chronic
Post by FZfan on Jun 29th, 2004, 6:43pm
so cool you guys. I see D is posting now, too. outstanding! STAY PF!

Title: Re: no longer chronic
Post by miapet on Jun 30th, 2004, 12:38pm
FZ . . thanks for being so supportive through this whole thing  . . .all the way back to when I was asking for help/ideas/thoughts/whatever . . .and was posting about all the hits the beast was sending our way . . .
and yes, isn't it great that D is posting now???? *smiles*

I will still keep this post updated . . .just so people know how well this can work . . .
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by FZfan on Jun 30th, 2004, 5:29pm
wow, what a memory you have. I barely remember that myself. I do remember what a tough time D was having and how fed up he was with docs and meds. Actually, I kinda got the impression you were both fed up with docs and meds.

Anyway, definitely keep this thread updated as long as PF time continues. Wouldn't it be great if you ended up updating this thread for years?  8)

Title: Re: no longer chronic
Post by E-Double on Jul 1st, 2004, 4:35pm
Miapet & D

First of all; that is amazing and I'm so very happy for you both :)

I read the clusterbuster site!!!

I apologize for my own misconceptions!!
I never judge individuals but I may have had preconcieved notions  based upon "recreational" use from many years ago!

NOW I UNDERSTAND!!
                                          &
God Bless You guys!!

Eric


Title: Re: no longer chronic
Post by miapet on Jul 2nd, 2004, 10:31pm
FZ . . that would be fantastic!!!  Imagine, this thread being updated, weekly, for ever!!!
e-double . . .I hope you find what works for you, whatever that may be.
We are still p/f . . .I'll post Wednesday to update the thread weekly *g*
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by pamstroud on Jul 3rd, 2004, 7:06pm

on 07/02/04 at 22:31:19, miapet wrote:
FZ . . that would be fantastic!!!  Imagine, this thread being updated, weekly, for ever!!!
miapet


Please do, as it is tremendously inspiring -- I don't know how many people I have told about your experience, which must certainly be THE definitive one.

Pam

Title: Re: no longer chronic
Post by miapet on Jul 7th, 2004, 3:02am
8 weeks pain free!!!!

This is so fantastic . . .D is like a new man!  

Pam, thank you!  We had given up on medicine . . .the drugs didn't work, and the side-effects were devastating for us.  After reading everything possible about this treatment, and then meeting with Flounder, we knew we had to do this . . .that was the best decision we could have ever made!

We wish everyone an eternity of p/f days and nights . . . .

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by Giovanni on Jul 7th, 2004, 5:09am
You are on a roll D.  We're all happy for you.

[smiley=sayyes.gif]


Title: Re: no longer chronic
Post by miapet on Jul 15th, 2004, 12:45am
9 weeks pain free!!!!

D feels well enough that we are going to travel, and tell my grandmother 'happy 99th b-day' . . . At the beginning of this year, I would have never thought that it would be possible for us all to go!!

I hope you all are finding some relief . . .and hope it lasts forever!

*positive light and energy*
miapet
(I'll post updates when we return home.)

Title: Re: no longer chronic
Post by miapet on Jul 31st, 2004, 12:26am
11 weeks pain free

(after) The travel, time changes, lack of sleep etc, I'm happy to say:  D is still pain free!

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by E-Double on Jul 31st, 2004, 12:35am
http://smileys.smileycentral.com/cat/23/23_5_121.gif


May it keep going and going and going and............................................................................................................................................

Forever smiles!!

Eric

Title: Re: no longer chronic
Post by Giovanni on Jul 31st, 2004, 7:42am
You had a really good test with your recent travels.  I was wondering how D was doing and so happy to hear he had a pf vacation........and

11 weeks...Wow!!

John
:P

Title: Re: no longer chronic
Post by IndianaJohn on Jul 31st, 2004, 8:58pm
Doing the happy dance swinging from a chandralier for you guy's!  Hope it works as well for me.

Title: Re: no longer chronic
Post by miapet on Aug 1st, 2004, 4:08am
Thanks e-double and Giovanni *smiles*

Indiana . . .thank you *smiles*  I hope to be *happy dancing* for you soon *smiles*  Remember, you need to be CH meds free before dosing, so the meds can't interfere with the treatment.

*positive light and energy*
miapet

BTW, did I mention, D sleeps now!!!!!!!!!!
*pl&e*
m

Title: Re: no longer chronic
Post by Robert_C. on Aug 1st, 2004, 8:24pm
Miapet,

This is wonderful-extraordinary-mindblasting great news!

I have just strted getting serious information on CH.  I've been getting thru this website all weekend and it's been a roller-coaster of informations and emotions.

I didn't see any bright light at the end of the tunnel...until now.

I'll go check the clusterbusters website right now.

But I have to agree with E-Double, it's undiscovered country for me except for some preconseptions from years ago.  Easy to get rid off with just a little bit of thinking.

Don't forget to use sunscreen on your vacation.

Robert.

P.S. Thanks for the tip on the melatonin in my 'canabis' question.


Title: Re: no longer chronic
Post by ex_pat_asia on Aug 1st, 2004, 9:07pm

on 05/26/04 at 13:04:02, miapet wrote:
As many of you know, D has been a chronic CH sufferer for about the past 20 years.  I want to report  it is official.  D is no longer chronic.  


Mia and D - I have to confess...as a newbie here...and as a mostly conservative businessman... I was very skeptical of the psilocybin connection. So much so it almost chased me away and am most fortunate that not a small amount of desperation kept me here reading. I am still somewhat skeptical. As a child of the sixties I had played with them all. In fact..best "recreational" I ever used were shrooms picked from a field near my home in Oregon. My skepticism does not include condemnation of anyone that would take this step. As as a child nearing my sixties,  I have read your fantastic news today and am noting it well. Thank you for sharing that with us. I will be eager to hear progress reports. I am not quite ready to book a flight to Amsterdam but I am less skeptical...and very happy for you both.

"I'm very brave generally, he went on in a low voice: only today I happen to have a headache.
-Lewis Carroll"



Title: Re: no longer chronic
Post by Giovanni on Aug 2nd, 2004, 10:08am

The only way to find out Ex_Pat_Asia is to investigate and maybe try.  I totally avoided a certain cycle that starts in February and goes thru June with me.

I am having some cluster related activities right now for the past 3 weeks (several shadows per week), but avoided a cycle starting (so far). I wish I had discovered this 10 years ago.

This treatment does not work on everybody, but works on me better than anything that I have tried in the past with zero side effects.

John

Title: Re: no longer chronic
Post by miapet on Aug 3rd, 2004, 1:20am
Ex-Pat and Robert C . . .let me give a little background (other than the 20years chronic).  D is a 58 year old male who did not use recreational drugs (he hasn't even drank in nearly 20 years) . . .we joke that a baby aspirin will get him loaded *g* . . .so this treatment took a lot of talk and support . . .but we (he) are very glad we made this choice!  If it hadn't been for Giovanni, flounder, and the other pioneers in this treatment, and all of their support . . .I don't know that we would have taken this step.  I can honestly say, this has been almost as if D has been reborn.  It truly has been a whole knew life for us.  All I can say is, read read read . . .and ask questions.  As far as we are concerned, this is the best treatment available.  The traditional medical treatments offered us no help, and had such bad side-effects (both short term and long term) that we were really not left with many (any?) choices.  We had managed to get o2, which would abort a h/a in roughly 7 minutes (which was WAY better than the 40 minute norm), but using o2 every hour (on a good day it would be every 2 to 4 hours) . . .but this has been a blessing.  We were able to travel  6,000 miles without o2 . . .and have now relegated the o2 to the little closet . . .I almost forget what it was like to always be dragging that bottle around with us!
We wish everyone to be p/f, no matter what method they choose . . .although, we clearly advocate for the 'shroom' *smiles*
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by miapet on Aug 10th, 2004, 11:02pm
Somehow, I missed posting the 12th weeks report, so am now to 13 weeks p/f!!!!.  

Life has really changed during the past 3 months.  

We hope the best for everyone, and wish you all many p/f days and nights.

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by E-Double on Aug 10th, 2004, 11:09pm
don't even know you guys but get tears of joy each time.

So happy fo you both,

Eric

Title: Re: no longer chronic
Post by LeeS on Aug 11th, 2004, 4:37am
Great stuff Kim/D :) I'm still taking inspiration from your good news and your *positive light and energy*.

Keep going.

-Lee

Title: Re: no longer chronic
Post by DerbyDemon on Aug 11th, 2004, 4:30pm
Just found the site today...and what a wonderful thread. And to think I was beginning to feel that what I had done in college was the reason the demons were descending upon me.

Up until the past month and a half I had avoided them for two years. Now they visit with unrelenting frequency. For me it seems to be when I'm outside trying to play golf...or at that dreaded 2 am witching time.

I've learned so much in such a short time...looking forward to much more. So glad to hear that someone and so many are beating them.

Title: Re: no longer chronic
Post by Giovanni on Aug 11th, 2004, 4:53pm
[smiley=sayyes.gif]

Title: Re: no longer chronic
Post by alleyoop on Aug 12th, 2004, 6:54pm
It is because of this string that I have decided to try this alternative route. I live in GA, so getting spores through the mail is not an option(illegal in CA & GA). However with an abundance of cow pastures, along with an ideal climate(hot & humid), it is a good place for "picking". I have put a couple of "feelers" out, and am waiting to hear back. My question (yes, I have a question!) is this: Does anyone know if there are seasons to these things or not? I live more or less toward the middle of the state. I can remember picking them myself back in the seventies in south FL. I think we picked year around (not sure) but there was no change of seasons down there, just summer all year 'round. Just curious. If they've got to be harvested during the hot weather (which I suspect), then I don't have a whole lot of time left!

Thanks in advance for any and all replies! D, your's is truly an amazing story! Being chronic myself, I can truly empathize with you and I wish you nothing but continued success! I only hope that someday I will be able to post such a success story!

PFNADS to all............................................

............................................................alley

Title: Re: no longer chronic
Post by miapet on Aug 12th, 2004, 8:35pm
Eric and Lee, thanks for the continued support . . we wish you both the best.  Lee, I know you're doing much better . . .and we are counting the days with you *smiles*

Giovanni, you are still one of our angels *smiles*

alley, we sooooooooooooooooo believe in this treatment!!  We will be pulling for you!!!  I think (I haven't 'picked' any in forever, and I didn't live in this area then) they do best when it isn't HOT . . .but I know there will be more knowlegable people giving you tips soon.  In the Pacific Northwest, spring and fall were the times to look.  Here, when it rains, then the sun comes out is when you want to look . . .like withing a couple of days (I think) . . .and our 'seasons' are a lot like yours *g*.

We wish everyone an eternity of p/f days and nights.

*positive light and energy*
D & miapet

Title: Re: no longer chronic
Post by alleyoop on Aug 12th, 2004, 8:46pm
Thanks Mia,

I knew about the sunshine after rain deal, but must admit am surprised that you think it's ideal when it isn't hot! I hope you're right as it will give me more breathing room. Although, as I'm sure you can appreciate, tomorrow wouldn't be too soon for me to find relief!

Thank you for the reply.......................................

....................................................................alley :)

Title: Re: no longer chronic
Post by Flounder on Aug 12th, 2004, 8:50pm
First off, WOOOOOHHHOOOO Miapet and D ;;D
Keep up the good work!

alleyoop,
There are seasons. The fall and spring are best.
They come out after a good rain and they like temps between 70 and 80. You really need to know what you are looking for and don't consume anything until they have been identified by someone that knows without a doubt that they are what you want.
You are probably better off growing your own. There are risks of being caught on someone’s land or just getting them home. They do grow in your state
though.

Title: Re: no longer chronic
Post by miapet on Aug 12th, 2004, 9:01pm
alley, see?  i told ya someone who knows would come along *g*

Flounder:  you are, without a doubt, an angel.

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by Flounder on Aug 12th, 2004, 9:38pm
Actually, they don't like the sun. It dries them out. Overcast days after a good rain are best.

Oh, I'm no angel Maipet. But thank you.

Title: Re: no longer chronic
Post by LeeS on Aug 13th, 2004, 12:27pm
Best of luck alleyoop, I hope you find what you're looking for and that it works for you - do let us know how you get on.

Quote:
Lee, I know you're doing much better . . .and we are counting the days with you *smiles*
;;D

-Lee

Title: Re: no longer chronic
Post by alleyoop on Aug 13th, 2004, 11:01pm
Will do!

...........................................alley ;;D

Title: Re: no longer chronic
Post by miapet on Aug 19th, 2004, 10:02pm
Well, we made the 14 weeks p/f mark!!!

I have to say, D is feeling so much better!  He's researching things  . . . and he sees everything now!  

We wish you all an eternity of p/f days and nights!

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by E-Double on Aug 19th, 2004, 10:10pm
beautiful!!!!!!!!!!!!

E

Title: Re: no longer chronic
Post by BlueMeanie on Aug 19th, 2004, 10:17pm
I'm a little late reading this thread but with the good news it's never to late to say:

CONGRATULATIONS !!!

Title: Re: no longer chronic
Post by FZfan on Aug 20th, 2004, 8:38am
Miapet and D, the good news continues and I continue to be thrilled for both of you.

alleyoop, please be very careful gathering from nature. Unless you know someone who is an expert at identifying fungi, you really should consider growing your own.

There are, of course, other ways to get them. Having friends in low places does come in handy sometimes. ;)

Title: Re: no longer chronic
Post by LeeS on Aug 20th, 2004, 10:29am
14 weeks mia/D - must add my *YAY* to this one.

Keep battlin' and supportin' ;;D

-Lee

Title: Re: no longer chronic
Post by miapet on Aug 21st, 2004, 9:21pm
Eric, thank you *smiles*

BlueMeanie, you're right . . it's never too late!  Thank you *s*  

FZ, thank you *smiles*  And, thank you for continuing your support of us, both while in full battle and while p/f *smiles*  and alley, FZ is right . . .gotta make sure it's the right fungi *g*

Lee, I'm just glad we can be saying *YAY* to each other!!!

Wishing everyone a p/f night .. .and all days and nights to follow.

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by IndianaJohn on Aug 21st, 2004, 9:27pm
That is such great news!  It's been so long that I have forgoten what a pf night was.  Cheering and rooting for you guys!

Title: Re: no longer chronic
Post by BobG on Aug 22nd, 2004, 9:54pm
Wow! This string has been going on since May 26th. Outstanding!
I hope it will be still be at the top of the page until this website can be put to rest.

Happy news pisses me off. The screen gets blurred. Now I have to go find a tissue. (It's a man thing).

Title: Re: no longer chronic
Post by miapet on Aug 29th, 2004, 1:12am
Indiana, thanks . . .we're hoping you get a break  .. like NOW!!

BobG . . .it really is fantactic, isn't it?  Thank you for your well wishes . . we too hope it continues to the end of a need for this site!!

We want to report:   we passed the 15 week mark on Wednesday!!!

We did a maintenance dose this weekend (early), due to this time of year being when the cycle-from-hell-within-the-'normal'-cycle usually starts (it was the last cycle-from-hell-within-the-cycle that brought me here oh so long ago) .. .anyway, still no h/as . . .and still counting our lucky stars *smiles*

Wishing you all a restful and p/f night . . followed by an eternity of p/f days and nights *smiles*

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by E-Double on Aug 29th, 2004, 8:08am
Right on!

Title: Re: no longer chronic
Post by LeeS on Sep 1st, 2004, 12:11pm
Keep going D 8)

Title: Re: no longer chronic
Post by Giovanni on Sep 2nd, 2004, 5:45am
Miapet and D,

You guys have been an inspiration and hope to many people.  

May your success continue forever!

John
:)

Title: Re: no longer chronic
Post by miapet on Sep 2nd, 2004, 8:53pm
Thanks Eric.  We hope you are getting some relief.

Thanks Lee!  We are following your success too!!  May our counts continue forever!!

Giovanni, you, Flounder, and the other Busters have made our success possible, we can never thank you all enough! Our posting D's results on this public forum was with the wish that it would help someone else make this decision . . . and to try the one thing we truly believe works.

We have passed the 16 week mark!!!!  *HAPPY DANCE*  Joining the Clusterbusters in the quest for helping all clusterheadache sufferers has been the best decision we have ever made!!!

Wishing everyone p/f days and nights.

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by E-Double on Sep 2nd, 2004, 9:10pm
That's incredible!!!

D got out and I went in.

question....

Are there episodics who do this treatment??
Or has it just been chronics who have gone through it all and finally have decided to do this method?

Just curious. VERY curious at this point.

Continued support :)

Regards,

Eric

Title: Re: no longer chronic
Post by alleyoop on Sep 2nd, 2004, 9:12pm
D, Mia, I think you guys already know what an inspiration you have been for me! Thank you so much for posting your story here. There's no telling how many people you have reached!

....................................alley :)

Title: Re: no longer chronic
Post by tommyD on Sep 2nd, 2004, 9:57pm

Quote:
Are there episodics who do this treatment??
Or has it just been chronics who have gone through it all and finally have decided to do this method?


Pleany of episodics use it; it works better for episodics.  A tally of anecdotal reports shows shooms are effective for about two thirds of chronics and 80 to 90 percent of episodics.

If you're in cycle, it may take a little stronger and and a few more doses than if you use it before a cycle starts.

And some have had good luck with very small doses, so small no tripping is involved. I had a cycle coming on this spring and knocked it out by taking a very small dose (equivalent to less than one eighth of a gram) every day for a week, skipping a week, then doing another week of daily doses. Got no buzz at all...and no attacks since March.

Some folks have had good luck using small doses as an abortive. A small piece under the tongue or a sip of tea held in the mouth at the first sign of an attack can knock it out in 5 to 15 minutes. No tripping needed...

...not that there's anything WRONG with that...

-tommyD

Title: Re: no longer chronic
Post by E-Double on Sep 2nd, 2004, 10:14pm
thanks Tommy

Title: Re: no longer chronic
Post by Flash on Sep 3rd, 2004, 6:25am

on 09/02/04 at 21:57:04, tommyD wrote:
And some have had good luck with very small doses, so small no tripping is involved. I had a cycle coming on this spring and knocked it out by taking a very small dose (equivalent to less than one eighth of a gram) every day for a week, skipping a week, then doing another week of daily doses. Got no buzz at all...and no attacks since March.
-tommyD


That's very interesting because this is more or less the approach that I now advocate.  Here my daily template to be used at the onset of an episode or during a chronic cycle:

0 hour Wake up
Drink 1/2 - 1 pint water #1
dose with 1/4 gram dried (approx 4 gs fresh) #1
take 20-45mins light exercise such as a brisk walk to kick start the metabolism

+1 hours eat small meal #1

+4 hours eat small meal #2 and drink 0.5 pint water #2

+7 hours eat small meal #3 and drink 0.5pint water #3

+9 hours dose with 1/4g dried #2

+10 hours eat small meal #4 and drink 0.5pint water #4

+13 hours eat small meal #5 and drink 0.5 pint water #5

+15 hours dose with 1/4g dried #3

+16 hours eat small meal #6 and bed (no water obviously)

Follow the above regime for 1-2 weeks then taper it off.  Do not attempt for more than 2 weeks as we have no idea of any long term issues.  The doses are however very very small.

Please note that a small meal can be a piece of toast, or a banana, or even a pot of yoghurt.  The idea is to spread your normal food intake across 5 evenly spaced meals.

Reduce salt intake to only what naturally occurs in the food.  In other words avoid foods with added salt, and do not add any salt to the food.

This method also eliminates the spectre of trippy effects.

The 3 small doses each day ensure that there is psilocybin available for uptake at all times.  Note that a typical trip lasts ~4-6 hours from absolute baseline to absolute baseline.  This many doses is potentially ovekill, but it's better to over do it and scale it down, than to come up short.  In the grand scheme of pharmacology we are talking an incredibly small quantity of psilo measured at a fraction of the mass of verapamill or imitrex.  I see no obvious danger in employing this regime for a couple of weeks.

Title: Re: no longer chronic
Post by miapet on Sep 4th, 2004, 9:49am
Eric . . .you heard the news from 2 great sources!  Yes, episodics have success with this treatment!

Alley, we're glad that we could inspire you . . and hope that it does inspire lots more people . . . we truly believe this is the answer, and why not give it a try?  Clusterheads give so many 'traditional' medications long efforts with little or no success  . . .we have a hard time understanding the hold out to try this one.  Yes, we know there are other things that may cause a little more anxiety with this treatment, but people can work through that anxiety (D did), and have great odds of seeing it work.  

Due to this treatment we are now making future plans, something we couldn't do before.  We bought a motorcycle and go riding now . . .we plan trips in advance . . .we arrange things in advance and don't worry that the beast will prevent them from happening . . .it really has been a life changing event.

As always, we wish everyone p/f days and nights, no matter what your method of battle is . . .and encourage people to try this treatment.

*positive light and energy*
D & miapet

Title: Re: no longer chronic
Post by alleyoop on Sep 4th, 2004, 10:28am
Fantastic Post Mia!!!

....................alley ;;D

ps
I'm sure your new "British Babe" will add newfound pleasure and freedom to your and D's lives!

Title: Re: no longer chronic
Post by miapet on Sep 5th, 2004, 12:11pm
Alley, thanks . . .we are soooooooooooo in your corner.  We want to share our p/f status with you!!!  And watch you count your p/f days, see them turn into weeks, and then months, years, and on and on an on *smiles*

Yep, our 'British Babe' is soooooooooo fun!  I'm sun-burnt from all the riding yesterday *g* D is going out again today . . .I'm taking the family to The Gator Festival *g* ...I'm letting him slide on this one, so he can enjoy our new toy . . . we'll get him at dinner *L*  Maybe we should bring him some 'gator on a stick' back *L*

Sending you LOTS of our energy!  Stay strong, you can do this!

*positive light and energy*
crispy-miapet

Title: Re: no longer chronic
Post by miapet on Sep 10th, 2004, 11:09pm
I'm happy to say, Wednesday, D made it 17 weeks P/F!!

We couldn't be more pleased with this treatment and the results we are enjoying!

Wishing everyone p/f days and nights.

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by E-Double on Sep 10th, 2004, 11:13pm
:) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :)
:) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :)
:) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :)
:) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :)
:) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :)
:) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :) :)


on and on!!!

beyond words!

E.

Title: Re: no longer chronic
Post by lionsound on Sep 11th, 2004, 10:23am
wow.

incredible!

Title: Re: no longer chronic
Post by Flounder on Sep 12th, 2004, 12:49am

on 09/11/04 at 10:23:58, lionsound wrote:
wow.

incredible!


Yeah, I think so! ;;D


Title: Re: no longer chronic
Post by Giovanni on Sep 12th, 2004, 9:16am
Way to go "D" and Miapet.  May the weeks continue to be months and then years.

Yipeeeeee :D

John

Title: Re: no longer chronic
Post by alleyoop on Sep 12th, 2004, 9:46am
Ya gotta love it!

This is what it's all about!

.................................alley :D

Title: Re: no longer chronic
Post by miapet on Sep 15th, 2004, 11:45pm
it really is INCREDIBLE!!!!  we just hit the 18 week mark!!!!!!

Flounder and Giovanni, we wouldn't be here without you, and the other busters . . .we thank all of you!!

Alley, we are following you too . . . and we believe *smiles*

eric and lionsound ... thank you *smiles*

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by E-Double on Sep 15th, 2004, 11:47pm
keep going! ;;D

E

Title: Re: no longer chronic
Post by Sophie on Sep 21st, 2004, 12:50am
I am new to this, but your good news is wonderful for you and gives me hope. I'm 60 yr. old and on my 3rd week of topamax and hate it. When I read your post it made me feel so good for you guys. It's suppose to rainhere tomarrow---thinking about a walk---not yet--will get better educated and detox. Let me repeat---very happy for you.

Title: Re: no longer chronic
Post by miapet on Sep 24th, 2004, 6:08pm
detox and take that walk!! use o2 as an abortive!!

we just passed the 19 week mark .. . .what a life .. . months of p/f time has felt like years ..  .and like we are new people .. .

wishing you all p/f days and nights . . .

miapet

Title: Re: no longer chronic
Post by FZfan on Sep 27th, 2004, 7:45am

on 09/24/04 at 18:08:59, miapet wrote:
we just passed the 19 week mark .. . .


And the streak continues. I never get tired of hearing about it. May the PFDAN continue.

Title: Re: no longer chronic
Post by E-Double on Sep 27th, 2004, 10:14am

on 09/24/04 at 18:08:59, miapet wrote:
we just passed the 19 week mark .. . .what a life .. . months of p/f time has felt like years ..  .and like we are new people .. .
miapet



Continued Happiness :)

E

Title: Re: no longer chronic
Post by LeeS on Sep 27th, 2004, 11:14am

Quote:
and like we are new people .. .


Would like to second that 8)

-Lee

Title: Re: no longer chronic
Post by miapet on Oct 6th, 2004, 10:10pm
Oh my gosh . . .the time has flown!  Last week, I missed posting the 20th week of success, and now we're at the 21st week of p/f!!!!
Our lives are moving faster and faster . . .we travel . . .we moved (*yay* no more stairs!!!).. .and we just do STUFF.
We wish you all an eternity of p/f days and nights . . .
*CLUSTERBUSTERS ROCK*
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by Giovanni on Oct 7th, 2004, 9:09am
*D* is certainly the poster boy for this treatment.  ;;D I'm so very happy for the both of you.  Enjoy that motorcycle!

John

Title: Re: no longer chronic
Post by 1MajorPain on Oct 7th, 2004, 1:35pm
Now it's starting to sound like your bragging Mia....lol.
You know I'm kidding, I couldn't be any happier for the both of you......keep the good news coming!

Major
also still PF!

Title: Re: no longer chronic
Post by E-Double on Oct 7th, 2004, 9:17pm
Enjoy!
Fantastic to hear about your adventures in Pain Free Land. It's a great place to be and I'll visit again.

Keep posting the awesome news :) :) :)

E.

Title: Re: no longer chronic
Post by Flounder on Oct 7th, 2004, 9:35pm
WOOOOOOHOOOOOOO!!!!!!!!!

Wow, this thread is at 5 pages. Let’s hope it continues on and on.

Title: Re: no longer chronic
Post by holistic_love on Oct 7th, 2004, 9:57pm
if you want to stopsuffering from cluster headaches go to this website erinelster.com she will cure you

Title: Re: no longer chronic
Post by thomas on Oct 7th, 2004, 11:35pm

on 10/07/04 at 21:57:02, holistic_love wrote:
if you want to stopsuffering from cluster headaches go to this website erinelster.com she will cure you

No body cracking my neck is gonna fix what's wrong with my brain.  Now, if you have one (a brain) you will cease and desist.

Title: Re: no longer chronic
Post by vig on Oct 7th, 2004, 11:45pm
she loves Jermy...

ilovejermy@hotmail.com

Title: Re: no longer chronic
Post by thomas on Oct 7th, 2004, 11:49pm

on 10/07/04 at 23:45:48, vig wrote:
she loves Jermy...

ilovejermy@hotmail.com

Yeah, he's probably "metero"   ;)  I think she goes for the door-mat, puppy-eyed, pushover types.

Title: Re: no longer chronic
Post by Ueli on Oct 8th, 2004, 12:09am
This thread is about the success story of Miapet and D.
How successful their treatment is for others too, you can read in another thread on this page (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1096914761).
We all here know the people and their cluster headache stories, and so we can believe their testimonial.

On the other hand you tell us nothing about yourself, not even if you're male or female. Instead you plug an extremely dubious quack procedure, that has to show up one little case of a "cure" for CH. BTW, are you "Jeremy" from the elster web site, the one who consulted over 50 neurologist in 13 year (that is one every three month)?


Here's a challenge for you:
Modern Medicine can show for the past 100 years many really great advances in health care, from eradication some diseases like pox and polio to advances in surgery, today surgery on the open heart has a better success rate than appendectomy a hundred years ago.

Can you tell us about similar success stories by  holistic "medicine", something bringing consistently improvement, not just some rare chance result? If not, STFU (shut the fuck up) and stop messing up our message boards with your shameless quack plugs.

http://img.photobucket.com/albums/v396/Ueli/frog.gif


PS, from Merriam-Webster:
The holistic medicine attempts to treat both the mind and the body.
Get ready to run as fast as you can before you tell a clusterhead that "it's all in your mind".

Title: Re: no longer chronic
Post by miapet on Oct 9th, 2004, 9:49am
Thank you everyone, for your continued support *smiles*

John, we will gladly share our 'poster boy' status with any and all CH sufferers *smiles* Thanks to all of you, for sharing your knowledge, we are able to post about our p/f lives.  
Flounder .. . .when you have a minute . . .maybe we can talk? hehe, and YES, we hope this thread just continues to grow and grow and grow *g*
Major . . we are sooooooooooooo glad you are still p/f . . .and hope it lasts forever, for all of us . . .
Ueli, thanks for defending our thread, and pointing out Flash's thread to the 'quacker' *g*
We cherish our buster family *smiles*
We wish all busters great success in their treatments, and wish to share our status with all  . . .
All CH sufferers, we encourage you to give this method a try . . . it worked for us *G* . . .and it's long-term side-effect is p/f status *g*
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by tex_leger on Oct 12th, 2004, 3:21pm
Where was all this info 20 years ago. I knew there had to be something out there, all I had to do was talk to the right person. For me the magic bullet is prednisone but I worry about long term use. I am getting less time between courses. I'm 62 and will try anything. I'm leaving New Brunswick Canada for my winter trip to Arizona and will try to find people that have some knowledge about mushrooms. I haven't a clue what to look for but as soon as I find out you can bet I'll try them. All this info is great and thanks to all of you, I'll beat this yet.
Tex ;) ;) ;)

Title: Re: no longer chronic
Post by Margi on Oct 12th, 2004, 3:27pm
Tex, if you're on pred, you definitely shouldn't try the shrooms.  It's better to be completely med-free if at all possible before you dose.

You're on "long-term" prednisone?  Or do you mean that you do a short course of pred with each cluster cycle.  There are other preventative meds out there - pred can be pretty brutal on the system.

Don't forget to check us out over at the Canadian cluster site, as well:  http://www.clusterheadaches.ca.  I think you've got some clusterhead neighbours there in the Maritimes. ;)


Title: Re: no longer chronic
Post by tex_leger on Oct 12th, 2004, 3:36pm
Margi I'll check out the site. At first I would go months without headaches then it went to weeks now it's down to days. I would only try after I finished the pred. Thanks for the info
Tex ;) ;) ;)

Title: Re: no longer chronic
Post by miapet on Oct 12th, 2004, 7:23pm
Tex,  we totally understand the 20 year remark!!  As Margi said, you need to be med free.  5 days minimum is the standard . . .D was med free even longer than that.  o2 as an abortive was a life saver.  
If you're going to try to 'look' (and I'm guessing pick), you need to know what you're looking for . . and better yet, someone who knows so they can verify that's what you found!  
Again, Margi provided you with great info, and the clusterbuster site will answer tons of your questions.
We wish you well.
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by tex_leger on Oct 13th, 2004, 10:37am
thanks miapet, as I said I'll be heading south this winter
and won't be able to try this till I get back to canada. But I should be able to get a lot of info while I'm south. When I try this I'll want to be on familiar ground. This is great news for all lets hope this gets out to all sufferers.
again thanks to all.
Tex ;) ;) ;)

Title: Re: no longer chronic
Post by miapet on Oct 13th, 2004, 9:35pm
Jeff . . .thank you for such a great post!!  We love that you're having such success too!!!  AND, you're so right to thank all the busters . . .Flash, P Shark Mark, P Floyd, and all the rest are responsible for giving us our life back . . .if any buster needs anything, hell or high water, we'll do our best to make sure they get it . . .
I'm quite tenacious . . so this thread will continue!
BTW . . this makes 22 weeks!!  In a couple of weeks, we'll be doing our maintenance dose . . .I'll keep you all posted.
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by LeeS on Oct 14th, 2004, 7:17am
*YAY* Jeff, mia and D!

All the best with the maintenance dose.

-Lee

Title: Re: no longer chronic
Post by Giovanni on Oct 14th, 2004, 10:18am
Each week my wife asks, "how's *D*"?  My answer is always the same............he's doing great.  It always puts a smile on both of our faces when I say this to her.

Incidently, I'm on the way to recovery after two doses to break this cycle that I'm in now.  Down to a few minor shadows. I feel like a human again.

John

Title: Re: no longer chronic
Post by E-Double on Oct 14th, 2004, 12:40pm
you guys rule!!!

Glad to hear you all have such great success. Let it continue.

Eric

Title: Re: no longer chronic
Post by miapet on Oct 16th, 2004, 6:24pm
Thanks!  and *YAY* for Lee and Giovanni too!!!!!  We're so glad for both of you!!!

We did a big ole test last night . . .D hasn't drank in 20 years . . . and last night, we had a beer together!!! (This was a first!!!)  *happy dances* life just keeps bringing us 'firsts' *g*
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by Flounder on Oct 16th, 2004, 11:37pm
I don't remember authorizing any alcohol consumption in D's treatment plan ;)  [smiley=beer.gif]

That's great that you guys could share a brew.
I'm still planning on coming out with my soon to be famous Clusterbusters Shroom Ale. I know I'll make a fortune if I can just get it past the TABC approval.
I'll be taking orders soon. ;;D

Warning, Clusterbusters Shroom Ale may cause and abort a Cluster Headache at the same time. This could be very confusing to a clusterhead. The manufacturer recomends that this product should be taken with a grain of salt

Title: Re: no longer chronic
Post by miapet on Oct 21st, 2004, 12:15am
hahahahhhahahaha Flounder!!  Can we put our order in now? hehehe . . whole new concept for maintenance dosing *L*

We are happy to announce week 23 of being p/f!!  

Wishing you all (busters and non-busters) a good nights rest . . .and an eternity of p/f days and nights.

(*YAY* to all our buster brothers and sisters who are enjoying more and more p/f time!!!)

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by LeeS on Oct 21st, 2004, 4:05am

Quote:
my soon to be famous Clusterbusters Shroom Ale
I hope it tastes better than Pinky's tea ;;D

Congratualtions D & mia :)

-Lee

Title: Re: no longer chronic
Post by miapet on Oct 23rd, 2004, 11:44am
hehe, *whispers*  taste-shmaste . . .tea time is almost here . .don't let D hear you say it tastes bad *L*
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by BobG on Oct 23rd, 2004, 4:01pm
Just wanted to say WOW! 5 pages going on 6.

This is Cool.......keep it going.

;;D

Title: Re: no longer chronic
Post by D on Oct 26th, 2004, 11:32pm
I am very proud of you !

D

Title: Re: no longer chronic
Post by miapet on Oct 27th, 2004, 5:48pm
Today makes 24 weeks . .. 6 months . . .(if you figure months to be 4 weeks) . . . OMFG . . . what a ride this has been .....holding on and riding this horse as long as it will hold us . . .

*positive light and energy*
D & miapet

Title: Re: no longer chronic
Post by chris on Oct 28th, 2004, 3:06am
Would like to know your exact method of consuption. I have been chronic for 8 years and have just stumbled upon a friend. Wanna do it right!!

Title: Re: no longer chronic
Post by miapet on Oct 28th, 2004, 11:36pm
Chris,
There have been good results in numerous ways such as:  tea, plain, or dry mixed into somthing like chocolate.  We used the dry/mixed method.
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by miapet on Nov 3rd, 2004, 11:46pm
WOOHOO!!!!!!!!!!!!!!!  We made it to 25 weeks!!!

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by survivor13 on Nov 14th, 2004, 3:03pm
that's great news! but please don't be devasted if it returns. my first bout was ten years (91-01). they dissappeared sept. 2001. was so happy! thought they were gone forever. this past aug. i can remember saying theeeiiirrr baaaaaccckkkk. i only hope they don't last ten years again. good luck!

Title: Re: no longer chronic
Post by E-Double on Nov 14th, 2004, 5:10pm
GO       D   !!!!!!!!!!

Always great to hear!!!


Keep going!


E.

Title: Re: no longer chronic
Post by miapet on Nov 20th, 2004, 9:42am
miapet is currently offline wrapping up some work on a class.  I am updating this thread for her.

I have passed the 26 and 27 week mark being pain free.

Survivor, sorry your ch returned.  My first bout lasted 20 years.  Schrooms work.

Peace and Positive Energy
D

Title: Re: no longer chronic
Post by amos on Nov 23rd, 2004, 5:30pm
hi,
I'm following your succes and happy for you.
also planning visit to Amsterdam, hopfully i can finf srooms (or somthing else..) as well.
I'm CH chronic for over 6 years, last year is hell, despite the daily 240 verapamil, and 200-400 valproate,
also capergot,  and cicles of prednisone.
nothing helps.
O2 (sometimes)and imitrex inj can stop pain.
Question: why not to try the "chemical" at a low dose from "official shop", and bother with srooms?

Thanks
:D

Title: Re: no longer chronic
Post by dantheman on Nov 30th, 2004, 4:35pm
CONGRATULATIONS!!!!!!  and my God continue to bless you!!!!!!!!!!!!!1 ;;D ;;D ;;D ;;D ;;D ;;D [smiley=laugh.gif]

Title: Re: no longer chronic
Post by miapet on Dec 9th, 2004, 9:21am
I'm baccccccccckkkkkkkkkk hehe

Thank you, D, for updating the thread while I was 'away' *g*

D has passed the 28th and 29th weeks of being pain free!!!!!

We did his maint. dose on 12/4.  Everything went well, the tightness in his neck, and the 'popping' sounds are gone . . . .and he's still loving life *smiles* . . .

This was our first Thanksgiving, and will be our first Christmas together w/out CH . . . I'm more thankful than I ever knew I could be!!!

Amos, I'm not sure what 'chemical' you mean, but I have a couple of guesses *g* . . .the deal is, we aren't in Amsterdam, so we can't go to an official 'shop' and try anything.

dantheman, thank you *smiles*

I'll try to keep up with this thread, we have a puter issue at home (I got it in my head that we didn't need the internet *L* go figure????, so now we have to decide what we're going to do *L*), but I'll be working on keeping things going *smiles*

Wishing everyone a p/f holiday season.

*positive light and energy*
D & miapet

Title: Re: no longer chronic
Post by miapet on Dec 16th, 2004, 11:10am
30 weeks pain free!  
This will be the first Christmas in 30 years where D can actively participate!!
*positive light and energy*
D & miapet

Title: Re: no longer chronic
Post by exhausted on Dec 16th, 2004, 11:25am
[smiley=huh.gif]..so is this cluster headache a psychological problem and not a physical problem in the brain ?

i'm not trying to be sarcastic just trying to understand a loved ones problem

Title: Re: no longer chronic
Post by vig on Dec 16th, 2004, 11:58am
No, it's NOT a psychological problem.  It's a brain CHemistry, neurotransmitter problem.  Psilocybin/Psilocin acts with certain receptors and stops the pain.  
It's NOT a psychological problem, thank you.
But it does cause some eventually!

Title: Re: no longer chronic
Post by JJA on Dec 16th, 2004, 12:16pm

on 12/16/04 at 11:25:12, exhausted wrote:
[smiley=huh.gif]..so is this cluster headache a psychological problem and not a physical problem in the brain ?

i'm not trying to be sarcastic just trying to understand a loved ones problem

It's extremely unlikely that the effect of hallucinogens on CH has anything to with its psychological effects since a dose that is unperceivable psychologically is often effective for the headaches.  Like Vig said, it is much more likely a serotonin effect.  These hallucinogens are serotonin agonists (they act like serotonin).  Cluster headaches are known to be linked to serotonin.  

Jesse

Title: Re: no longer chronic
Post by Flash on Dec 16th, 2004, 12:42pm
The brain of the CH sufferer is physically different to the brain of a regular person.  The CH brain has changes to it's hypothalamus.  This is very much a physiological condition.  It's just me that's the psycho.

Title: Re: no longer chronic
Post by exhausted on Dec 16th, 2004, 12:54pm
so then do the antidepressents that act on the brain chemicals have any effect on treating?

Title: Re: no longer chronic
Post by vig on Dec 16th, 2004, 1:09pm
Yes, some do.
I took Amitryptaline (Elavil) and it stopped an episode after a few weeks, but the side effects were too much.

I haven't tried others.

Title: Re: no longer chronic
Post by eyes_afire on Dec 16th, 2004, 7:12pm

on 12/16/04 at 12:54:14, exhausted wrote:
so then do the antidepressents that act on the brain chemicals have any effect on treating?


In my personal experience... no way.  No effect at all.  I've tried lots of anti-depressants and some of them gave me huge problems.

--- Steve

Title: Re: no longer chronic
Post by miapet on Jan 2nd, 2005, 10:12pm
We're back!  D has made it past the 32 week mark of being pain free!! *happy dance*
This time off has been so strange . . . no computers, no h/as, and no scripts . . .
Wishing everyone a p/f new year.
*positive light and energy*
miapet
exhausted, please feel free to email, I messaged you back.
*pl&e*
mia

Title: Re: no longer chronic
Post by LeeS on Jan 3rd, 2005, 4:48am
Welcome back mia and *YAY*

Keep going D.

-Lee

Title: Re: no longer chronic
Post by E-Double on Jan 3rd, 2005, 1:24pm
[smiley=sayyes.gif]

Title: Re: no longer chronic
Post by miapet on Jan 4th, 2005, 12:47pm
Thanks Lee!  and thanks for the *YAY* *G*  Glad you're doing well!

Thanks e-double . . .how are you doing?

*positive light and energy*

D & miapet

Title: Re: no longer chronic
Post by miapet on Jan 5th, 2005, 1:33pm
We just hit 33 weeks p/f!!!!

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by E-Double on Jan 5th, 2005, 1:48pm
Fantastic to hear!!

I'm still having a party in my head...eek.

Life goes on and the inspiration from you guys is appreciated!

E.

Title: Re: no longer chronic
Post by miapet on Jan 12th, 2005, 2:14pm
34 weeks p/f!!!!!!!!!!!!!!!!!!!!

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by LeeS on Jan 13th, 2005, 12:59pm
*YAY* (add in an all singing and dancing smilie thing here).

Tell D that I'm trying my best to catch him up Kim ;)

-Lee

Title: Re: no longer chronic
Post by Renee on Jan 14th, 2005, 8:02am
Yeehaw!!!!

34 weeks!  That is awesome.

CONGRATULATIONS D & KIM

;;D

Title: Re: no longer chronic
Post by miapet on Jan 14th, 2005, 11:36am
Lee . . .we're wanting YOU to catch up with D!!!!  We both smile and cheer everytime you add more p/f time!!!

Renee, thank you so much!  We're pulling for you too!!

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by Frankie on Jan 15th, 2005, 9:16am
Can anyone explain in 'plain English' what cure was???

I am a CCH from England who is having real trouble getting any medication to help.  I have suffered chronically for over a year now, previously epsodic.

Please explain? 8)

Title: Re: no longer chronic
Post by karma on Jan 15th, 2005, 9:30am
Not a cure but relief.
www.clusterbusters.com
and read the discussions here about shrooms

Title: Re: no longer chronic
Post by miapet on Jan 15th, 2005, 9:17pm
Frankie, after you check out www.clusterbusters.com if you're interested in the treatment, you can go purchase mushrooms (legally) in the UK at some of the little shops *g* lucky to be in the UK!
As Karma said, currently, it's not a cure .. .but it's closest to a cure that many CHers have found.  Just read and ask questions, people will answer them *smiles*
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by LeeS on Jan 16th, 2005, 4:54am
Hi Frankie - fire away with any questions you may still have, I can sometimes speak 'plain English' ;)

*YAY* for 35 weeks (sorry, bit early).

-Lee

Title: Re: no longer chronic
Post by miapet on Jan 19th, 2005, 12:23pm
Thanks Lee! hehe . . .yes, we made it 35 weeks, and still counting!!!  Come on Lee, we'll celebrate your p/f time with ours!
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by LeeS on Jan 20th, 2005, 11:12am
So glad you posted Mia 8)  Thought I may have let the jinx monster out :P

Well done D :)

-Lee

Title: Re: no longer chronic
Post by miapet on Jan 20th, 2005, 1:19pm
Lee, oh nooooooooooooo no jinx monsters here, i used to believe in them, but not anymore *G*
i fully expect to continue posting here for a very lonnnnnnnnnnngggggggggggggggggg time!
*positive light and energy*
mia

Title: Re: no longer chronic
Post by miapet on Jan 26th, 2005, 3:56pm
36 WEEKS PAIN FREE
and we're loving every minute of it . ..
We have really gotten to know each other over the past 36 weeks.  Before this time, we had only known each other with the ever present beast .. . .gosh, we're still alive and still together hehe go figure?
Wishing everyone p/f days and nights . .. no matter what your method of attack on the beast is .. .
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by miapet on Feb 2nd, 2005, 3:17pm
i feel like the energizer bunny . . . .we just keep going & going & . . . .37 weeks p/f!

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by E-Double on Feb 2nd, 2005, 4:45pm

on 02/02/05 at 15:17:09, miapet wrote:
i feel like the energizer bunny . . . .we just keep going & going & . . . .37 weeks p/f!

*positive light and energy*
miapet


Good for you.....keep going and going!!!! :)
http://re2.mm-a.yimg.com/image/221311517Enjoy!

Title: Re: no longer chronic
Post by Flounder on Feb 3rd, 2005, 1:33am
AWESOME!!!!!!!

My favorite thread continues.

Congrats you guys!

Title: Re: no longer chronic
Post by LeeS on Feb 3rd, 2005, 4:43am
Don't think I'll ever get sick of this thread *YAY* D!

Is that bunny a new sex toy? :-X  Go careful with that skullcap ;) ;;D

-Lee

Title: Re: no longer chronic
Post by Chillrmn1 on Feb 3rd, 2005, 5:54am
Hi Mia,

Sorry for coming in so late on the thread. Congratulations to both you and "D" on your success!!!

So glad for both of you.

Bob

Title: Re: no longer chronic
Post by miapet on Feb 4th, 2005, 4:33pm
hehe, Thanks Eric . . .we're going to try to keep going forever!
Flounder, we wouldn't be here if it hadn't been for you and Giovanni . .. *hugs*
Lee . .. hehe, uhhhhhhhhhhh , how'd ya know?? Bob . . .all support is happily accepted, beit the first response or the 1 millionth response *smiles* thank you!
Wishing everyone a p/f eternity . ..
*positive light and energy*
mia

Title: Re: no longer chronic
Post by Giovanni on Feb 4th, 2005, 7:21pm
Yea for D and Miapet ;;D  I hope your success inspires others to at least try this therapy.  They have nothing to lose except these damned headaches.

:P

Title: Re: no longer chronic
Post by ccbiggsoo7 on Feb 4th, 2005, 10:32pm
miapet, is there any follow up on dosing or just those 2 times. I just tried it last week and have went 7 days without any meds. I have never made it past 2 before. Might have something here. Chris

Title: Re: no longer chronic
Post by Rock_Lobster on Feb 5th, 2005, 11:24pm
adowedshay odaytay, osay Iway osedday onighttay.  eelingfay
ettypray uckingfay appyhay ightray aboutway ownay.

Title: Re: no longer chronic
Post by vig on Feb 7th, 2005, 12:26am
eryvay oolkay ockray
;;D

Title: Re: no longer chronic
Post by Pinkfloyd on Feb 7th, 2005, 1:30am

on 02/04/05 at 22:32:13, ccbiggsoo7 wrote:
miapet, is there any follow up on dosing or just those 2 times. I just tried it last week and have went 7 days without any meds. I have never made it past 2 before. Might have something here. Chris


Hey Chris,
Glad to hear you're getting some success. People usually use maintenance doses. If they were chronic, they take a dose again after a month or two and then try to spread out the doses a little longer each time to keep them away. If they are episodic, they'll take a maintenance dose just before their usual cycles are scheduled to return. If they feel any activity brewing in the background, they tale a maintenence dose.
Some people have now progressed to once or twice a year. Others a little more often.
Even three or four doses (or 10 for that matter) a year sounds a lot better than a few hundred Imitrex shots per year, along with months of scripts needed to keep the 02 tank total under 100. JMHO.

Bobw

Title: Re: no longer chronic
Post by miapet on Feb 7th, 2005, 2:08pm
John, Thanks!  We totally agree .. what's there to lose by trying . .. maybe a big freaking pain? hehe

Chris,  
Congratulations on your 7 p/f days!! *YAY* and *happy dance*
Sorry for the time lapse!  D has dosed every 2 to 3 months as preventative measures.  As PinkFloyd explained, it depends on if you're chronic or episodic.  Some people have longer windows between doses than others .. .

hehe Rock . . how are you now?

PF, thanks for watching our thread and taking care of people *smiles*  You (like flounder and giovanni) are truly an angel!

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by Langa on Feb 8th, 2005, 9:10am
Tried the shrooms 10 days ago for the first time and have been PF since.  Prior to that, non-stop cycle for 6 months, with at least 2 hits a day.  

Can I get excited now?  ;;D

Langa

Title: Re: no longer chronic
Post by cat14 on Feb 8th, 2005, 9:30am
Anyone know long term affects with doing shrooms? If any for us chronics, thinking of going that route soon here maybe?

Title: Re: no longer chronic
Post by Flounder on Feb 8th, 2005, 9:53am

Quote:
Tried the shrooms 10 days ago for the first time and have been PF since.  Prior to that, non-stop cycle for 6 months, with at least 2 hits a day.  

Can I get excited now?


We'll submit your request to get excited when the board reconvenes. Unfortunately there are several submissions of excitedness ahead of yours on the agenda and this may create a quagmire.

In the meantime I'll be excited for you Langa.

WOOOOHOOOOO!!!!!!!!!!!!!!


Title: Re: no longer chronic
Post by Langa on Feb 8th, 2005, 9:59am

on 02/08/05 at 09:53:01, Flounder wrote:
We'll submit your request to get excited when the board reconvenes. Unfortunately there are several submissions of excitedness ahead of yours on the agenda and this may create a quagmire.

In the meantime I'll be excited for you Langa.

WOOOOHOOOOO!!!!!!!!!!!!!!


Okay, I'll wait-LOL...in the meantime, i'm doing the happy dance...

[smiley=shore.gif]

Title: Re: no longer chronic
Post by JJA on Feb 8th, 2005, 10:43am

on 02/08/05 at 09:30:26, cat14 wrote:
Anyone know long term affects with doing shrooms? If any for us chronics, thinking of going that route soon here maybe?

Well as far as studies on toxicity, most were done prior to or in the early sixties and it was found to be very safe from a toxicology point of view. More importantly, (to me) this drug has been used for centuries and widely used for the past 40 years. In my opinion, if it caused problems, they would be well known by now.

The only catch is psychological health. People with...well, mental problems...are more likely to manifest psychological problems. This probably wouldn't even be a factor at the small doses used for CH.

I'd say the biggest long-term effect would be the legal risk. I think it's a small, well justified risk, but it is what makes shrooms somewhat dangerous to a CHer (hey, now's a good time to read my signature)

The point: Far safer than most drugs used for CH except for legal risks.

Good Luck. One long term effect could be no more CH!

Jesse

Title: Re: no longer chronic
Post by miapet on Feb 10th, 2005, 11:11am
Langa:  *YAY* and *happy dance*  (i'll be excited, along with flounder, for you!)

Cat . . .Dr. Sewell (Harvard) was actually discussing the side effects too . .. and he found nothing to indicate any problems.  The question came up due to a concern about sperm health.  

JJA, I would agree . . .The best side-effect is being p/f and enjoying life again!

38 WEEKS  PAIN FREE (2 doses to break the chronic cycle, preventative doses every 2 to 3 months)

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by LeeS on Feb 11th, 2005, 10:35am
*YAY* Kim ;;D

WooHoo to you too Langa.  Hope you're still PF.

-Lee

Title: Re: no longer chronic
Post by E-Double on Feb 11th, 2005, 10:53am

on 02/10/05 at 11:11:53, miapet wrote:
Dr. Sewell (Harvard) was actually discussing the side effects too . .. and he found nothing to indicate any problems.  The question came up due to a concern about sperm health.  


Just got that info....the big selling point for a newlywed who is trying to break cycle or thinking about starting a family soon.....

Glad it continues and awesome news for the rest who are following the lead....

Best!!

Eric

Title: Re: no longer chronic
Post by karma on Feb 11th, 2005, 11:19am
Eric,
I know you consider the risk of this treatment to be to high because of its legal status but having open minded sperm seems a small price to pay.  ::)

Title: Re: no longer chronic
Post by Friend on Feb 13th, 2005, 11:12pm
I am new to the board and think its great you are pain free!!  I get the headaches for about 3 months a year.  I was reading the site because I would rather never get them.  I am just glad to hear all is well and for such a long time!!  Angela

Title: Re: no longer chronic
Post by miapet on Feb 14th, 2005, 10:30am
Eric . . .glad you're considering now  .. .hope the news eases lil-jo's mind *smiles*

Friend . . .check out www.clusterbusters.com there is a lot of good info.  D has not had a single CH since breaking his chronic cycle.

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by E-Double on Feb 14th, 2005, 6:28pm
Glad all continue to be PF!!!

I'm considering it!!

Got my a$$ kicked this morning just as I was walking into my first case........

The father looked at me and knew..tells me take as long as you need!....Wish all were so sympathetic!
It nearly brought the mother to tears....

Spent over an hour in my car ...emptied an E tank and 1/2 an injection and still didn't break.

Honestly the worst one I have had in a while.....I'm usually able to abort quick!

Anyway.....If I do go down this path I will certainly need advice and help in cultivation.

I have a pretty green thum so hopefully that will help!

I hear Ecuadorians, B's or Puerto Ricans are the way to go due to speed of growth and "effect"

Is this true?
Getting close.....
My cycle is now nearly as long as D is PF.....

Much Love!!

Eric

Title: Re: no longer chronic
Post by Friend on Feb 14th, 2005, 10:22pm
I am new to all this and the drug thing.  Are you all talking about mushrooms? If yes...how do you know how to do it and the dose thing and all that.  I just want to know so if nothing else works then I know what to do.  Thanks!!  Angela

Title: Re: no longer chronic
Post by tommyD on Feb 15th, 2005, 6:08am
Friend -

Yes, they're talking about psilocybin mushrooms. Information is available at: www.clusterbusters.com

Best treatment there is, for many, if only we can prove it. Don't necessarily need to take a trip, and they're not necessarily illegal everywhere, just most places - like the US and Canada...and I'm not so sure about Canada. Legal in the UK (for now) and the Netherlands.

For many, a few small doses - a week apart and barely enough for a buzz - can end a cycle. Others need more effort. Your mileage may vary. This is not for everyone. Folks with a predisposition toward certain mental illnesses should not take hallucinogens of any kind.

Research thoroughly and ask questions; experts are standing by, or hanging around, or taking a nap somewhere... anyway they'll be by to answer questions.

-tommyD

Title: Re: no longer chronic
Post by miapet on Feb 15th, 2005, 11:56am
Eric . . .I've heard the ecuadorians are a 1st choice for many new 'farmers' as they are easy to grow, are hearty, and good producers.  I think, as long as you don't pick one of the 'finicky' ones to try first, you can have good results with most of the varieties.  
Yes, Eric, it hasn't slipped our attention that your cycle has been about the length of D's p/f time . . .we'll also notice when you are counting your p/f days .. .weeks .. .months .. .*smiles*
Friend, as tommyD said . . .they appear to be our best bet against the beast .. .and people will be around to answer questions . . .I also second his suggestion of reading www.clusterbusters.com as a lot of questions will be answered .. .along with a lot more being brought up *g*
Thanks tommyD (and others) for watching this thread, and answering people's questions!  much love to you all *smiles*
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by guesst on Feb 15th, 2005, 1:10pm

on 02/15/05 at 11:56:22, miapet wrote:
Eric . . .I've heard the ecuadorians are a 1st choice for many new 'farmers' as they are easy to grow, are hearty, and good producers.  

Just tried these, and I will say this they are potent also.  But have seemed to help immensely.

Title: Re: no longer chronic
Post by miapet on Feb 15th, 2005, 3:44pm
guesst, *YAY* glad you're finding success!

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by Friend on Feb 15th, 2005, 6:24pm
Thanks for the advice...we looked and the site and got all the info we needed.  I did go to the nuero today and he gave me elavil today.  Does anyone know if that works?  He did seem kinda stupid and maybe wasnt listening to me.  He is going to send me for an MRI and EEG so we will see what comes of that.  But I will use the info from that page to make sure I dont get them!!! Thanks again....Angela

Title: Re: no longer chronic
Post by E-Double on Feb 15th, 2005, 6:52pm
Here's a question regarding detox.......

I happen to have some other HA types as well and I take indocin as a prevent which has deminished those.....I had decresed that for a while b/c it effects stomach yet the zaps came back....

(i tend to ramble..apologies)

If detoxing from the other stuff b/c wanting to try it for CH .....

Does anyone know "from experience" if this might help those as well....Kinda a tougher situation...

Want to get rid of the beast yet when you have "mini beasts" as well ????????????What to do?

Dr. Sewell have an answer for that one?

Thanks a bunch!!!!

Eric

Title: Re: no longer chronic
Post by miapet on Feb 16th, 2005, 9:24am
Eric, what other kind of h/as are you talking about?  I know there has been great help for more than 1 migraner (me included) .. . .
When it's time to dose, I detox D from everything but essential meds.  He used to be on B/P meds, so we kept that (no not Verep) going.  Now, I detox him off everything (he even goes off the supplements) . . .5 day minimum  .. .. and I keep him off for a few days after, to make sure everything 'takes'.
Does this help?
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by JJA on Feb 16th, 2005, 9:59am
Eric, if you can stand it, I'd detox just to be on the safe side. I think I know what you mean about "zaps" (like a cluster pain, but lasting only a few seconds).  I rarely, if ever, get "zaps" except a for a few days after treatment.  Then I get "zapped" for a couple of days before everything clears up. Hopefully this would clear up your "zaps" too. (I think it comes and goes with CH). Things may get worse before they get better, but don't lose faith.

Jesse

Title: Re: no longer chronic
Post by LeeS on Feb 16th, 2005, 10:40am
Eric

I believe indocin (indomethacin) is an NSAID.  Please see the below excerpt from clusterbusters.com

Quote:
4.1.3 Probable non-effective
There are medications which will probably not interfere with the actions of psilocybin:

1) antibiotics
2) NSAIDs (non-steroidal anti-inflammatory drugs) such as tylenol (acetaminophen), aspirin, ibuprofen, Vioxx (rofecoxib), etc.
3) antacids and anti-ulcer medications
4) asthma medications
5) insulin

It must be noted that the above category reflects personal opinions. We have seen no reports of interactions with these medications, and suspect that the mechanisms by which these medications act is too different from the action by which psilocybin and LSD work for there to be any significant interaction.


I used to get those "zaps" occasionally too, which although not officially diagnosed, I put down to idiopathic stabbing headache (now called primary stabbing headache I believe).  Not had one of those at all since dosing some seven months ago.

All the best with it

-Lee

Title: Re: no longer chronic
Post by E-Double on Feb 16th, 2005, 12:03pm

on 02/16/05 at 10:40:14, LeeS wrote:
Eric

I believe indocin (indomethacin) is an NSAID.  Please see the below excerpt from clusterbusters.com

I used to get those "zaps" occasionally too, which although not officially diagnosed, I put down to idiopathic stabbing headache (now called primary stabbing headache I believe).  Not had one of those at all since dosing some seven months ago.

All the best with it

-Lee


Bingo!! and thanks for the info!!
Bringing me closer ;)
PF wishes!

Eric

Title: Re: no longer chronic
Post by miapet on Feb 16th, 2005, 12:07pm
eek ..it's Wednesday and, I almost forgot, 39 weeks p/f

sheesh

*positive light and energy*
mia

Title: Re: no longer chronic
Post by LeeS on Feb 16th, 2005, 12:38pm
So by my calculations, next week will be full term! ::)

Thereafter, induction maybe necessary. Tell D to stay off the nitroglycerin! :o ;)

Congrats!

-Lee

Title: Re: no longer chronic
Post by miapet on Feb 16th, 2005, 1:49pm
hehe . . .now Lee . . . ya know all that other stuff we do may lead to the need for nitro hahahahahahah  being h/a free has taken us down many paths of ummmmmmmmm exploration hahahahahahahahahah
thanks for the well wishes . . .you, the other busters, and all potential new busters will be invited to the ceremony *L*
*positive light and energy*
miapet


Title: Re: no longer chronic
Post by BobG on Feb 20th, 2005, 1:07pm
Bump back to the top.

Have a nice day.  :)

Title: Re: no longer chronic
Post by pam s on Feb 22nd, 2005, 10:31pm

on 02/14/05 at 18:28:25, E-Double wrote:
Spent over an hour in my car ...emptied an E tank and 1/2 an injection and still didn't break.

Honestly the worst one I have had in a while.....I'm usually able to abort quick!
Eric


Wow, when that happens, it is time to try plan Z. I've never had trex not abort a CH -- and I've never had one less than a 10 except at beginning and end of cycle.  Last cycle I aborted every single one, but the cost was huge. The cycle was at least two weeks longer than normal, and I was having the CHs all day long*. Plus I got terrifying side effects. If things go as planned, next cycle I will not go back to trex.

*Trex does cause an increase in CH frequency:


Subcutaneous sumatriptan induces changes in frequency pattern in cluster headache patients.

Rossi P, Lorenzo GD, Formisano R, Buzzi MG.

Headache Centre, INI Grottaferrata, Rome, Italy.

OBJECTIVES: To document the relationship between the use of subcutaneous (SQ) sumatriptan (sum) and a change in frequency pattern of cluster headache (CH) in six patients. To discuss the clinical and pathophysiological implications of this observation in the context of available literature. BACKGROUND: Treatment with SQ sum may cause an increase in attack frequency of CH but data from literature are scant and controversial. METHODS: Six CH sum-naive patients (three episodic and three chronic according to the International Headache Society (IHS) criteria) are described. RESULTS: All six patients had very fast relief from pain and accompanying symptoms from the drug but they developed an increase in attack frequency soon after using SQ sum. In all patients, the CH returned to its usual frequency within a few days after SQ sum was withdrawn or replaced with other drugs. Five patients were not taking any prophylactic treatment and SQ sum was the only drug prescribed to treat their headache. CONCLUSIONS: Physicians should recognize the possibility that treatment of CH with SQ sum may be associated with an increased frequency of headache attacks.

Title: Re: no longer chronic
Post by Mr. Happy on Feb 23rd, 2005, 12:08am

on 02/22/05 at 22:31:15, pam s wrote:
next cycle I will not go back to trex.

So what's your options? I'm all ears.
RJ

Title: Re: no longer chronic
Post by miapet on Feb 23rd, 2005, 9:14am
Bob . . .thanks for the 'bump' *smiles*

Well, we just hit the 40th week p/f . . .all thank to the magic of the fungus .. . .

Which, btw, Mr. Happy, is what I believe PamS has in mind . . .no more trex.  . . only the fungi . . . .

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by pam s on Feb 23rd, 2005, 8:51pm

on 02/23/05 at 09:14:32, miapet wrote:
Well, we just hit the 40th week p/f . . .all thank to the magic of the fungus .. . .

Which, btw, Mr. Happy, is what I believe PamS has in mind . . .no more trex.  . . only the fungi . . . .


Correct, Miapet.  When I tried it before I was detoxed but already at the end of a cycle, so my data is not useful -- but I do believe it killed off nagging day-long shadows I'd developed as a result of trex. I will try it as a cycle abortive next time.  

Congratulations for making it to 40 weeks! I've been following this thread with astonishment since May. This is one case history that will make history!

Title: Re: no longer chronic
Post by LeeS on Feb 24th, 2005, 3:48am
40 weeks! Wow - full-term ;;D  8lb 7oz! Have we a name yet? ;)

Congratulations D and Kim!

All the best with it next time Pam.  Have you considered a preventative measure rather than an abort?  Seems like cycles are harder to get rid of once they're established.

Good luck.

-Lee

Title: Re: no longer chronic
Post by Friend on Feb 24th, 2005, 8:46am
I have a question....You say that you use the fungus as a preventive.  Can I ask how you do that?  I get them about 3-6 months out of a year and was thinking if I just do fungus like every 2 months then maybe it will just stop it.  I am just looking for advice on how this works because soon I will be trying it.  I dont want it to start at all.  Any advice??  

Title: Re: no longer chronic
Post by vig on Feb 24th, 2005, 10:26am
I managed to miss an entire, scheduled episode by taking a few doses before the anticipated date....

nothing.

Title: Re: no longer chronic
Post by Cooked Brain on Feb 24th, 2005, 12:17pm
Oh yeah baby!  8)

I usually dont drink but for this one:

[smiley=beer.gif]

6 beers later:

[smiley=me&mb.gif]

Title: Re: no longer chronic
Post by pam s on Feb 24th, 2005, 9:00pm

on 02/24/05 at 03:48:00, LeeS wrote:
All the best with it next time Pam.  Have you considered a preventative measure rather than an abort?  Seems like cycles are harder to get rid of once they're established.


Thanks, Lee. My cycles are usually around 3 years apart so I have a while to go. The time of year is not entirely predictable, although the last couple have been in summer, so I am a bit afraid to take a pre-emptive dose and possibly incur the wrath of the beast unnecessarily. :-) I certainly don't want to wait until a cycle is established, but it usually takes several days before that happens, so I'm hoping at the first sign I can nip it in the bud.  But I am still reading posts and learning about how to proceed.

Title: Re: no longer chronic
Post by LeeS on Feb 25th, 2005, 4:27am
OK Pam, wise move - no need to shake things up unnecessarilly 8)


on 02/24/05 at 08:46:32, Friend wrote:
I have a question....You say that you use the fungus as a preventive.  Can I ask how you do that?  I get them about 3-6 months out of a year and was thinking if I just do fungus like every 2 months then maybe it will just stop it.  I am just looking for advice on how this works because soon I will be trying it.  I dont want it to start at all.  Any advice??

See http://www.clusterbusters.com for full details Friend, but here's a starter for ten.

Quote:
9. Maintenance Doses
After breaking your cycle or if you are currently in remission (between cycles) it is reported that one single dose taken on a schedule of "once every six months" will stop cluster cycles from returning on their regularly scheduled basis. Many people are enjoying years of a continued cluster free life by keeping on a regular schedule of maintenance dosing. This period between required doses is different for everyone and is sometimes determined by the onset of a "shadow" as a precursor of an oncoming cycle. It is generally accepted that a period not to exceed 6 months between doses is good insurance to stop a full blown cycle's return. It is much easier and more successful to keep a cycle from starting than it is to break a cycle.

Maintenance doses vary but people that have success with one single dose.......should avoid further doses once the cycle is broken, unless the symptoms get worse. Your body chemistry may have found it's balance, so best not shake the bottle again. Switch to preventative doses between episodes, therefore once every 3 months, starting in 6 weeks time. Use weak doses - once battered it doesn't take much to keep the beast at bay. After 2 years without any CH reduce the frequency of maintenance dose to once every 6 months. After a further 2 years you may escape with just an annual dose.

All the best with it.

-Lee

Title: Re: no longer chronic
Post by Ellick on Feb 27th, 2005, 9:38am
iwanabeer too.

Suggest you check out clusterbusters.com. All the details are on there.

Ellick.

Title: Re: no longer chronic
Post by Pinkfloyd on Feb 27th, 2005, 1:50pm

on 02/27/05 at 09:08:21, iwannabeer wrote:
I have read and read until my brain is mush (wasnt a long journey) and I can't find an easy way to get a hold of these shrooms, nor can I find anyone speaking of a dosage other than in g measurements. Can someone please help out in "dummy" terms? [smiley=huh.gif]


There aren't any easy (legal) ways of procurring them. Best bet is to grow them. All the info you need is on the clusterbusters website. If they work, you'll want to be able to have them in the future so you might as well begin the growing process. Is it worth $50.00- $100.00 and a few hours time to possibly have a neverending supply of medication? You don't need to stop your current treatment plan to begin looking forward to possible relief.

What other form of measurement would you like? Grams are about the only way to measure them. Example; 1.5 grams of dried mushrooms.  Its better than saying, grab a small handful ;-)
If you don't have a digital scale for mail that measures in 1/10 of a gram, they are available online for 20 bucks. Or, there are cheap ways (under a dollar) to make simple balance beam scales.

Good luck,
Bobw

Title: Re: no longer chronic
Post by miapet on Feb 28th, 2005, 2:21pm
hahahah, i love this thread!! and everyone who posts on it too!!!!!
our baby name is 'hootchie' hahahahah (actually, we're playing with 'baby' names right now .. .i want a t-cup-baby *L*)
Preventatives . . . I hate how this sounds, but y'all are all different, so when to do the prevent is going to depend on you.  D does his every 2 to 3 months.  He would prefer to be able to push the time out more, but I won't let him . . .it has taken us well over 1/2 of this time to learn what his pre-cycle tells are.  When the beast first came knocking, he had never heard of CH, and wasn't aware of the 'before' stuff . .. and, since 'it' never left (UNTIL THE FUNGUS) he never learned what they were . . .NOW we know . ..so, sometimes 8 weeks, sometimes 12 weeks . . .maybe, this time, it will be 16weeks? (we can hope *G*)
much love to all of you .. .and let us all continue counting our pain free time, and keep adding more people to the pain free list (which means more counting, but i'm okay with that *G*)
OH and guess what???? We are even discussing flying now!! I'm still holding out with 'why tempt the beast' but D is pushing for a plane ride *g*!
*positive light and energy*
mia

Title: Re: no longer chronic
Post by iwannabeer on Mar 2nd, 2005, 5:06am
Miapet,
Since beginning this treatment, have they completely dissapeared? I mean, the usual triggers don't even set them off? Ie.. alcohol, afternoon naps, alcohol .......etc.

::)

Title: Re: no longer chronic
Post by miapet on Mar 2nd, 2005, 11:44am
iwannabeer .. .during the first 2 doses, peanuts gave D a h/a . .. since the h/as have been totally gone 41 WEEKS PAIN FREE now, D and I have been able to have a few drinks together, take naps together, eat Chinese food, eat shrimp, and a host of other things that USED TO trigger h/as . . .  now, I've been a little freaked every time D trys something that used to mean a ch would whack us before we could enjoy it, but, so far, it's all been good *g* . .. and, it's really nice to sip a cold beer on a hot day . . .. among other things *wink*
Oh, did I say it:  41 weeks pain free!!!!
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by Ellick on Mar 3rd, 2005, 3:50pm
I have been drug free for 5 days now. It's been tough. Last night and the night before up every hour, holding on tight to get downstairs quietly and stick my face in  to the 02 mask. Have to get through the rise in pain each time before 02 starts to work.

Checked with my Dr about my plans to try psilocyben and about how soon I'd be drug free. Reckon Sunday is the earliest.
My Drs said why not go for it and are keen to find out how I get on.

It's hard not to put all my hopes in to this. I have past experience of psilocybin recreationally when I was younger so I know what to expect. I also know that when used in non abusing ways there is no evidence that I have heard of or read to suggest it is harmful.

This episode has been a tough bastard, feel like I've sometimes been in the shit pits of hell (excuse the language). I am fighting hard to keep my objectivity in that it may not work for me and I have to stand up again and fight again. I'm tired.

Fingers crossed for me.

ET.x

Title: Re: no longer chronic
Post by Pinkfloyd on Mar 3rd, 2005, 6:31pm

on 03/03/05 at 15:50:17, Ellick wrote:
I have been drug free for 5 days now.
Checked with my Dr about my plans to try psilocyben and about how soon I'd be drug free. Reckon Sunday is the earliest.

ET.x


We're all pulling for you.
I especially confident you'll be happy with the results considering you've been able to go completely drug free for this length of time.

5 days is usually enough. I'm wondering why your doc feels a longer period of time is needed. Which drugs were you using and did he feel it would take until Sunday for them to clear?

Bobw

Title: Re: no longer chronic
Post by Ellick on Mar 3rd, 2005, 6:51pm
I was taking sumatriptan and verapimil. I think the doc was just looking at giving some sort of margin. They, my Drs are supportive. I know more about Ch than they do and there is enough respect for me to get on with it.

BTW they are both female.

Thankyou for your support, it is so important when we are at a low ebb.

ET.x

Title: Re: no longer chronic
Post by LeeS on Mar 4th, 2005, 4:45am
Congratulations D and Mia :)

All the best with it Ellick.  Keep us posted as to how you get on.

-Lee

Title: Re: no longer chronic
Post by iwannabeer on Mar 4th, 2005, 4:53am
someone please tell me how to do that quote thing with the blue box. I hit the quote button, but my text goes in with the quote, and no blue box thing........comfrused [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif]


Also, I am going to try the fungus tonight, but am not drug free. I am still taking the Carbatrol to keep the beast away. Any advice from anyone? Will the Carbatrol negate the effects of the fungus? Or vice versa? Not sure what to expect, gonna do it anyway......

Title: Re: no longer chronic
Post by miapet on Mar 4th, 2005, 11:07am
Thanks Lee!
Ellick .. .don't feel discouraged . . .the beast does funny things when the shrooms are kicking him to the curb . .. it may take more than one dose .  .. it may not . . .but we'll all be pulling for you *smiles*

iwannabeer .. .i have no clue about that particular drug . . but, if it's only for CH, if you can detox, it would be best (myopino) . .can you use o2 while getting off it?

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by iwannabeer on Mar 4th, 2005, 5:49pm
Its primarily for controlling seizures in epilepsy patients, but it keeps my h/a down to mere shadows, nothing over kip3. It affects my equilibreum somewhat though. Not enough to lose my balance, but enough that you dont feel comfortable riding a motorcycle, and you still get a 6 or a 7 if you drink alcohol. Might sound like Im whining, but some things in life you really shouldnt be without....lol  8)

Title: Re: no longer chronic
Post by iwannabeer on Mar 5th, 2005, 6:41am

on 03/04/05 at 04:53:32, iwannabeer wrote:
someone please tell me how to do that quote thing with the blue box. I hit the quote button, but my text goes in with the quote, and no blue box thing........comfrused [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif] [smiley=huh.gif]



Ok Miapet, I figured it out, after hitting the quote button, just be sure you dont remove the little "quote" inside the brackets, and it'll come out in the blue box.

Title: Re: no longer chronic
Post by E-Double on Mar 5th, 2005, 7:06am
This is the most awesome thread!!!

Righteous!!!

Title: Re: no longer chronic
Post by Renee on Mar 5th, 2005, 7:28am
Eric,

A bit late but.....I have taken indomethacin while dosing and had no problems with the indo altering the effects.

With that said, I quit taking the indo after a few doses as the ice pick hits had disappeared with dosing as well.  Once the indo was out of my system I found that I had less "regular" headaches as well.

If you choose to stop the indo, detox off it slowly as it is an anti-inflammatory.  I don't know what dosage you are taking but I was on 200mg per day.  I quit all at once and felt like I had the flu for a few days.  Do a taper, in my opinion.

Hope this helps!!!  ;)

Title: Re: no longer chronic
Post by miapet on Mar 7th, 2005, 8:54am
iwannabeer .. .*YAY* glad you got the quote thingy down . . .if you are only taking the drug for CH, and not for epilepsy, than I would suggest detoxing off it . .depending on how much you're taking, taper off it?  does o2 work as an abort?  If it does, use it while you're detoxing!

*YAY* Renee! I love that people can share their knowledge about drug interacions, as so many have tried so many things!  Thanks for keeping up with our thread!

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by E-Double on Mar 7th, 2005, 6:03pm
Thanks for the info Renee!!!
And thanks for everything!!!
I love reading this thread........
HArd decisions to make yet will be made at some point.....
I have a new doctor that I will be seein over @ NECH so it is atleast a biggie that I finally get to deal with someone that "understands"......
The fungi remains on the mind yet I want to see what this guy can do.......

Love ya all!!!

Title: Re: no longer chronic
Post by Mr. Happy on Mar 7th, 2005, 11:35pm

on 03/07/05 at 18:03:37, E-Double wrote:
The fungi remains on the mind yet I want to see what this guy can do.......


As long as he doesn't bring up Goats, you're good to go. Once yer done fooling around with the medical diatribe, chew a fistful of shrooms. Or two. Or not.

We'll be at this for a while,
RJ

Title: Re: no longer chronic
Post by Chillrmn1 on Mar 8th, 2005, 5:52am
Miapet - So happy and glad "D" is still doing well and painfree. Keep it going!!!!!!!!!!!

E-Double - The alternative treatment has turned out to be the medication with the best and most effective results in alleviating my clusters I've ever tried. I only wish I would have tried it sooner - would have saved me years of unnecessary pain brought on by the beast.

Title: Re: no longer chronic
Post by miapet on Mar 8th, 2005, 1:38pm
E-Double . . .I know there are many things that contribute to a person's decision on if or when they will do shrooms or not . . .

BUT, for the life of me, I don't understand the willingness to continue searching for that cure, in the current medical field, when there are posts after posts of people not having success with 'traditional' treatments.  Why is it okay to take off-label scripts that a:  don't work   b:  are harmful to various body parts    c:  cause rebound h/as    d:  etc      e:  all of the above  ????  

I know I'm stirring up a hornets nest but, I don't see how walking around in a zombie state to phucked up to do anything about the h/a that's slamming you and to phucked up to know that it's been happenng for days/months/years/you fill in the blank .. . .when, just trying the fungi may be the answer y'all have been looking for .. . .I mean, what the heck, it can't do any worse than any of the other drugs that docs so willingly have y'all try .. . and it MAY DO GREAT!!!
Tomorrow, I will proclaim 42 weeks of p/f time .. .this thread, let alone this p/f time with the man I love, would have never happened without the fungi.

Mr. Happy . .. you're right . . .*sighs*

Chillrmn1 . . .here here . . .sooner would have rocked . .but now is just fine too!  Glad you're doing well!

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by Bob P on Mar 8th, 2005, 2:45pm

Quote:
Why is it okay to take off-label scripts

Question:  What is an off-label script?

Title: Re: no longer chronic
Post by floridian on Mar 8th, 2005, 4:12pm
an off-label script is a prescription that is used for something other than the FDA approved conditions.  

Some examples (I presume, haven't checked with the FDA) are Olanzapine and Ritalin for CH.  I doubt that the drug companies have tested these meds for clusters and jumped through hoops to get the FDA stamp of approval.

It is legal for a doctor to prescribe a med for anything if he believes it will help with that condition.  The pharmaceutical companies, OTOH, can only advertise a med for approved uses.

Title: Re: no longer chronic
Post by Bob P on Mar 8th, 2005, 4:29pm
thanks Flowreeda.  Guess that makes Imitrex one of the few on-label scripts for clusters.

Title: Re: no longer chronic
Post by Filbert on Mar 8th, 2005, 8:11pm

on 03/08/05 at 16:29:37, Bob P wrote:
thanks Flowreeda.  Guess that makes Imitrex one of the few on-label scripts for clusters.


It's the only licensed med for CH in the UK and Prof Goadsby is now on record as saying that it "probably" extends cycles.

        Filbert.

Title: Re: no longer chronic
Post by vig on Mar 8th, 2005, 10:13pm

on 03/08/05 at 20:11:27, Filbert wrote:
It's the only licensed med for CH in the UK and Prof Goadsby is now on record as saying that it "probably" extends cycles.

        Filbert.

Glaxo's clever little trick...

Title: Re: no longer chronic
Post by miapet on Mar 9th, 2005, 9:34am
Floridian, Filbert, and Vig . . . thanks for taking care of that!

Well, we hit42 WEEKS PAIN FREE!!!

Wishing everyone well in their battles with the beast~

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by Bob P on Mar 9th, 2005, 9:44am

Quote:
It's the only licensed med for CH in the UK and Prof Goadsby is now on record as saying that it "probably" extends cycles.

Realized that the first time I used the jabs.  I'll stick with cafergot and O2.

Title: Re: no longer chronic
Post by miapet on Mar 9th, 2005, 10:35am
BobP . . .o2 rocks!! PLEASE be careful on the cafergots . . .I know, lots of people don't have problems . . .but one person having a circulatory issue is one more than I like . . .. (just watch out, k?)

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by Bob P on Mar 9th, 2005, 10:51am
Been painfree for 39 months now.  Hoping I never have to go back to any of this crud.

I've used cafergot tabs for about 30 years to treat my clusters.  Usually average 20-30 tabs a week.  That's 2 to 3 times what the literature says is max.  To date the worst I've had is cold fingers and toes from the reduced circulation.

I knew a guy here at work who also used cafergot.  He woke up one morning to find his toes turning black.  Landed him in the hospital for a few days.  It is dangerous stuff.  I continually check to see if my toe and finger nails are still pink.

If another cluster does start I'll use:

1.  O2
2. Fungi
3. Kudzu
4. Amerge or Frova
5. Cafergot

in that order.  We'll see what happens.

Title: Re: no longer chronic
Post by miapet on Mar 9th, 2005, 4:33pm
BobP, *YAY* and *happy dance* .. .I hope you never have to use any of the things on that list!!!  Congratulations on being pain free!
*positive light and energy*
mia

Title: Re: no longer chronic
Post by bluesunshine on Mar 12th, 2005, 12:37am
Hi,

This thread is just inspiring.  Remember that all the meds you take are all off-label , including verapamil, depakote, topiramate, etc. etc.  Could the psylocibin be the first  "labelled" CH treatment?  In the mean time, keep on the white thumb working.
Join the dance, the dance of liberation!

Thank you D and miapet for your story, positive light and energy you give us !

Title: Re: no longer chronic
Post by miapet on Mar 14th, 2005, 8:47am
bluesunshine, you're right, all of those drugs are off-label .. .and we hope the fungi will be labeled for ch too!

As for spreading positive light and energy, and trying to inspire other people . . .we decided to post our results here in an effort to show others that there is hope . . .

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by miapet on Mar 16th, 2005, 9:33am
43 WEEKS PAIN FREE

Wishing everyone pain free time, no matter what your method of battle is .  . . ..

*positive light and energy*

miapet

Title: Re: no longer chronic
Post by LeeS on Mar 16th, 2005, 12:19pm
Truly amazing mia 8)

Tell D I'm still trying to catch him, but he's still got a bit of a headstart ;;D

-Lee

Title: Re: no longer chronic
Post by nani on Mar 16th, 2005, 12:23pm
I'm happy dancing for you guys, mia!!!!  [smiley=shore.gif]  WhoooHooooo!!!

Title: Re: no longer chronic
Post by miapet on Mar 16th, 2005, 12:52pm
Lee, we're excited for your success!! and we have no problem sharing the ability to be p/f and counting the weeks!
nani . . .thanks *g* . . .it's good to have dancing partners!

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by miapet on Mar 17th, 2005, 9:45am
hahahaha edited to erase my brain cramp *L*
*positive light and energy*
mia
ps, thanks vig! hehe

Title: Re: no longer chronic
Post by Seed on Mar 17th, 2005, 2:54pm
Hey everyone.  This is my first time to post on this board although I have been reading the site for quite some time.  I am a chronic as well with 3-5 headaches a day for the last 4 years.  

I am seriously considering this treatment and I have read the clusterbuster website but I was hoping someone who is knowledgable would have a conversation with me about it.  I am very nervous about even the possibility but im desperate at this point.

Title: Re: no longer chronic
Post by Sophie on Mar 17th, 2005, 4:44pm
Miapet
I just want you to know you are my inspiration. I've been following this thread from the beginning. Very happy for your sucess. I admire the way you have let others know about this treatment and suspect you have no idea how many you have helped. Thank you
                                                                     Sophie :)

Title: Re: no longer chronic
Post by Chillrmn1 on Mar 17th, 2005, 5:51pm
Well said Sophie!  Ditto :-)

Title: Re: no longer chronic
Post by miapet on Mar 18th, 2005, 10:48am
Seed . .check your pm box *g*

Sophie & Chillrmn, thank you.  When we first tried the treatment, we were only discussing our results privately, but decided to 'go public' to (hopefully) help other people.  D told me, baby, if we help one person, it's worth going public . . .I agreed with him then . . and we haven't regretted going public ever . . . .

We wish you all pain free lives, no matter what your method of battle is . . . .of course, y'all know what we use *G*

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by 1MajorPain on Mar 18th, 2005, 11:02am
There ya go bragging again Mia.....lol

Glad things are still working out for you and D!
Missed my last cycle (hopefully) and remain pain free.

Major

P.S. Mia, I still return my seat to the upright position, store the food tray and buckle up before flights.

Title: Re: no longer chronic
Post by miapet on Mar 18th, 2005, 11:37am
*YAY* Major!!! We're soooooooooooooo glad you missed this cycle!!! AND we're sure you will continue with the 'missing'!!!

Oh, and if you ever get out our way . . .I'll be happy to make sure y'all have your seats right etc *G* . .. what a hoot!  hehe

*positive light and energy*
mia

edit:  we REALLY need to have the 'reunion/bash' that we have mentioned a few times!!!

Title: Re: no longer chronic
Post by miapet on Mar 27th, 2005, 11:44am
44 weeks pain free

(sorry, for posting late, we've been on vacation)

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by nani on Mar 27th, 2005, 11:49am
[smiley=thumb.gif]      [smiley=shore.gif]

That rocks, mia!!!!!

Title: Re: no longer chronic
Post by LeeS on Mar 29th, 2005, 4:06am
*YAY*  Hope you had a good holiday Mia, and congratulations 8)

-Lee

Title: Re: no longer chronic
Post by miapet on Mar 29th, 2005, 8:56am
Nani and Lee .. thank you so much!  We had a great time the past week . . .and we're already planning our next vaca . . .*g*

*positive light and energy*
mia

Title: Re: no longer chronic
Post by jokrs2 on Mar 30th, 2005, 2:43am
Thanks for keeping the string going Mia. My wife and I couldn't agree to getting spores at this time because of the unfortunate legal issue, but we did agree on an order for some LSA Hawaiian Baby Wine Woodrose seeds. In fact I think she might want to dose with me just for old times sake. She is in menopause right now so maybe it will stop her itching and let her body calm down ;;D. My order should get here within the next 4 days  8). I will keep you posted as to dose and symptomology and of course "the results". The Kudzu is working well but I would like a complete break from the shadows as well, for even a few days, (hope it is way more). I purchased 50 hygrade Hawaiian seeds and since I have a green thumb I will grow a couple of plants and continue to do trials and keep records. Hope you keep up the PFD's. Blessings, Joe  ----and lets hope psilycibin is legalized for us CH'ers!

Title: Re: no longer chronic
Post by Chillrmn1 on Mar 30th, 2005, 4:35am
Quote: "Joe  ----and lets hope psilycibin is legalized for us CH'ers! "


Yes - Lets hope!

Bob

Title: Re: no longer chronic
Post by Flash on Mar 30th, 2005, 5:45am
Study www.erowid.org carefully.  That trip can last for a looooong time.


on 03/30/05 at 02:43:01, jokrs2 wrote:
Thanks for keeping the string going Mia. My wife and I couldn't agree to getting spores at this time because of the unfortunate legal issue, but we did agree on an order for some LSA Hawaiian Baby Wine Woodrose seeds. In fact I think she might want to dose with me just for old times sake. She is in menopause right now so maybe it will stop her itching and let her body calm down ;;D. My order should get here within the next 4 days  8). I will keep you posted as to dose and symptomology and of course "the results". The Kudzu is working well but I would like a complete break from the shadows as well, for even a few days, (hope it is way more). I purchased 50 hygrade Hawaiian seeds and since I have a green thumb I will grow a couple of plants and continue to do trials and keep records. Hope you keep up the PFD's. Blessings, Joe  ----and lets hope psilycibin is legalized for us CH'ers!

Title: Re: no longer chronic
Post by miapet on Mar 30th, 2005, 8:57am
Joe, please read the erowid site that Flash posted.  Make sure you are know as much as possible before dosing!  Also, do we know if kudzu and/or LSA inhibit each other?  You may need to 'detox' from the kudzu before trying the LSA . . .just thinking out loug  loud here . ..

As for keeping this thread going . . .I hope it lasts for eternity!!  Thanks Joe and Bob for your well wishes!

Oh, and did I say it?
45 weeks pain free!!!

hehe, got to post twice this week due to vaca last week!

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by E-Double on Mar 30th, 2005, 11:23am
:) ;;D :) ;;D :) ;;D

Title: Re: no longer chronic
Post by LeeS on Mar 30th, 2005, 11:48am
Oh well, guess I have to say congrats again then ;;D

Good luck with the LSA Joe. Please post to let us know how you get on, and as Mia suggests, I'd detox off the Kudzu first to ensure best efficacy.

-Lee

Title: Re: no longer chronic
Post by Tiannia on Mar 30th, 2005, 12:47pm
I am so happy for you and D hun.  Congrats....  May the beast stay away forever. But you still come back here and let us know. OK?

-Tia

Title: Re: no longer chronic
Post by jokrs2 on Mar 31st, 2005, 12:23am
Thanks for your suggestions Mia & Lee. I will stop the kudzu about 48 hours before my initial trial and drink a ton of water to clean out. I want this to be a viable test and am not looking for the intense high. I will be cutting 2 seeds after removing the husk and soaking, then mashing into a ball to swallow. I was thinking about a tablespoon of pepto bismol proior to ingestion to calm the peptic nerve, but because I've done The Owsly Windowpane I am not to worried about the possible short term upset tummy, I was trippin on the Owsley for over 2 days and impressions lasted for a week & met all the spirits on that one. ;) Makes todays LSD look like childs play, no offense to todays trippers  8). I am going to see how the small dose does and if needed will increase 1 additional seed per trial. Do you think 2 days off kudzu is sufficient?

Title: Re: no longer chronic
Post by jokrs2 on Mar 31st, 2005, 12:53am
In addition I have visited  the erowid site extensively, reading all the preparation,dose & trip reports and it is on the basis of those reports that my first experiment will be based. Again I would like to thank Bob & everyone involved with ClusterBusters, as it is maybe just a solid break from shadows that would make a world of difference to me. I am praying that I don't get slammed with a kip 10 when I stop the kudzu, part of the price to be paid I guess. ::)

Title: Re: no longer chronic
Post by LeeS on Mar 31st, 2005, 3:38am

on 03/31/05 at 00:23:29, jokrs2 wrote:
Do you think 2 days off kudzu is sufficient?

I don't think anyone knows yet.  My hunch would be 5 days off (similar to the sumatriptan guidelines) but perhaps you should wean off it gradually to help avoid any unnecessary activity? :-/

All the best with it - hope it's not a two-dayer :o

-Lee

Title: Re: no longer chronic
Post by miapet on Mar 31st, 2005, 9:26am
Tia . . .thank you so much, your support means a lot to me!  I hope all is going well for you, you are in my thoughts.

Jokr . . we totally second what Lee said *g*

Wishing everyone a p/f eternity, no matter what method they choose to battle the beast with.

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by jokrs2 on Apr 1st, 2005, 1:21am
Lee & Mia - OK 5 days it is. I'll back off the kudzu first and pray for miracles. Prayers & vibes, please. Arm in arm in battle, Joe

Title: Re: no longer chronic
Post by PCMCCK on Apr 2nd, 2005, 11:39am
How many chronic CH sufferers have been pain free for, shall we say 6 months or more, without taking any other medications except using mushrooms?  I've been following this thread and notice a lot of congratulatory posts but very little in the way of people writing in and stating that the mushrooms have worked for them.  I am chronic since 1996 and was pain free for over one year due to nothing more than a spontaneous remission, though at the time my neurologist and I thought that it was due to the Lamictal that I had started taking 3 months prior and continued to take throughout my remission and even for several months after the pain returned-and has remained-3 years ago.  By the way, while I do know about positive and negative energy (positive energy has the + mark on the battery and negative has the - mark), what the hell is "positive light"as opposed to, I guess, "negative light"?  Anyhow,  I really would like to know how many chronic CH sufferers have been pain free and for how long since using nothing else but mushrooms-and no cheating, please!  ;)

Title: Re: no longer chronic
Post by PCMCCK on Apr 2nd, 2005, 1:14pm
Chronic 1996-2001, spontaneos remission 2001-2002, chronic again from 2002 and still chronic, no remissions for 3 years now.  
I asked a simple question-how many chronic CH sufferers have remained pain free for 6 months or more using just mushrooms?  From your answer, I guess that it didn't work for you-thanks and good luck in finding something that works.

Title: Re: no longer chronic
Post by Pinkfloyd on Apr 2nd, 2005, 11:53pm

on 04/02/05 at 13:14:04, PCMCCK wrote:
 
I asked a simple question-how many chronic CH sufferers have remained pain free for 6 months or more using just mushrooms?  .


I guess someone else then hijacked your keyboard in the middle of your post, asking the other simple question regarding "positive light"? If you find out who it was, let me know so I can speak with him/her.

As to your question, although more episodics than chronics have had success (which is to be expected since epi's outnumber chronics 9 to 1), there are quite a few chronics that meet your requirements. Far more than could fall into the spontaneous remissions you'd like to lump them into.
You can believe me, which I doubt you'll do, or you can read about it when it hits the journals. Maybe you'll still be chronic then and decide to give it a try.

Bobw

Title: Re: no longer chronic
Post by PCMCCK on Apr 3rd, 2005, 12:23am
The "positive/negative light" is a more complex question-as for the simple question, you haven't provided any answer to it.  If one is episodic, of course the pain is going to go away for various periods of time-I had an 8 year pf period between my first attack and my second attack, much longer than is claimed on this thread by mushroom users.  Strange that I rarely see anyone writing in saying that "I've tried the "shrooms" and they didn't work."  I'll have to think back to what I was eating and or drinking during the 8 years between my 1st and 2nd attack-I do remember foie gras and caviar-and perhaps that is the real solution; just as valid as the self-congratualtory pap on this site.  Now, do explain negative light to me, please. [smiley=huh.gif]

Title: Re: no longer chronic
Post by Pinkfloyd on Apr 3rd, 2005, 12:49am

on 04/03/05 at 00:23:46, PCMCCK wrote:
 Strange that I rarely see anyone writing in saying that "I've tried the "shrooms" and they didn't work."   [smiley=huh.gif]


I guess that would be because for the most part (70-80%) people do get relief.
There are people here though that have stated it hasn't worked. A couple state they've even made their cycles worse. No one is claiming a cure. If you expect me to apologize for the people that have found relief, it just isn't going to happen.


on 04/03/05 at 00:23:46, PCMCCK wrote:
Now, do explain negative light to me, please. [smiley=huh.gif]


That would be a "black hole."
Best way to learn how they work is to get up close to it and peak in, if you get a chance.  :)

Bobw


Title: Re: no longer chronic
Post by Mr. Happy on Apr 3rd, 2005, 1:05am

on 04/03/05 at 00:23:46, PCMCCK wrote:
Just as valid as the self-congratualtory pap on this site.

Is it your custom to shit where you eat?
Holey moley.
You have some required reading to do, sir.
RJ

Title: Re: no longer chronic
Post by miapet on Apr 3rd, 2005, 3:35am
sorry y'all for what's happening here.

Thanks e-double, pinkfloyd, Mr. Happy, D and I appreciate your (and everyone else here) support.

I researched and read and asked questions about ANY POSSIBLE help for D . . .he was chronic from his first h/a . . .which was more than 20 years ago . . .NEVER a break . . . so when I found the information on mushrooms .. .i started reading . .and asking more questions . . and discussed it with D . . .and he finally agreed to try it .  .. and guess what . . it took more than one dose .. but he went for the 2nd one . . .and now we are able to live a p/f life . . .Wishing everyone an eternity of being painfree . . no matter what method they choose . . . There is hope . . .find yours!
*positive light and energy*
miapet
edited to remove myself from the bickering and negativity.

Title: Re: no longer chronic
Post by Sophie on Apr 3rd, 2005, 3:36am
I have a simple question also. If someone has been in pain with CH for the last 3 years, wouldn't  he/she start looking for a better answer than perhaps "Lamictal" ?
I think it is very logical to start serching for an answer.
And that's why I am here.  I am so proud of Mia and the way she is sharing what they learned. It takes alot of dedication to do what she is doing, and she really didn't have to do it. She could have disappeared in the sunset, laughing and pain free.
We are here to help each other. Sharing any information that might give one person some pain free time for awhile----weather it's ice or melatonin---nothing works for everyone.
              positive light and energy-----Sophie

Title: Re: no longer chronic
Post by PCMCCK on Apr 3rd, 2005, 3:48am
Pinkfloyd's quote by C.S. Lewis seems very appropriate to this site.  Forgive me for daring to raise questions about the sacred mushroom.  Please continue to encourage other sufferers to discontinue their medications because their doctors don't know anything any how and encourage them to take hallucinogens-by the way, I've read some of the "required reading" links suggested and I've noticed that virutally all of them have a disclaimer stating that they are not encouraging people to use hallucingenic or other illegal drugs, that they are just providing information and then go on to tell people how to grow them and take them-very morally courageous!  Do any of you know the possible adverse effects that hallucinogenics can have upon someone with an underlying psychiatric illness?  Perhaps that should be required reading.  When someone has the 8 year break between attacks that I did when I was episodic and can prove that it was due to the use of mushrooms, then that would be something to talk about.  Take whatever you want, but out of respect for others, please don't encourage them to take your drugs-that is something that should be decided between patient and doctor and my main concern is that someone will be harmed by discontinuing their treatment by their physician in favor of "unconventional" or "alternative" and unproven methods and then all of the "positive light and energy" and crystals and copper bracelets and hugs will not do a bit of good for that person.  Think of your moral responsibilities and remember, the US Constitution gives us the right to express dissenting opinions, but I don't think that those are welcome here..."All for one and one for all as long as you agree with us!"  Back to the lab to try to find that negative light. *g*

Title: Re: no longer chronic
Post by Mr. Happy on Apr 3rd, 2005, 3:57am

on 04/03/05 at 03:48:59, PCMCCK wrote:
Forgive me for daring to raise questions about the sacred mushroom.

You're not raising questions. Your mind was made up before you got here, for cryin out loud.

You build your house, I'll build mine.
RJ

Title: Re: no longer chronic
Post by PCMCCK on Apr 3rd, 2005, 3:57am
Sophie, if you would have really read my post, you would have read that I stopped the Lamictal years ago because it had nothing to do with my remission.  I am very happy that "D" is in remission and hope that he remains so forever, but who knows-mine lasted a year and after my first attack I had an 8 year remission without any treatment.  

Title: Re: no longer chronic
Post by PCMCCK on Apr 3rd, 2005, 4:01am
Mr. Happy, you don't sound very happy! :o

Title: Re: no longer chronic
Post by PCMCCK on Apr 3rd, 2005, 4:27am
Yes, miapet, I do have faith in my doctors and yes, I still have pain, as do most chronic CH sufferers-but if I read you correctly, we who still have pain should not write that "crap" on this site.  Please forgive me, I didn't know that that was one of the rules-please show me where it says that.

I don't care what you have "D" take, my concern is encouraging others to reject their doctors, just as you have now essentially told me that I'm an ass for still letting my doctors treat me and taking "conventional" medicine-for one who espouses *positive light and energy* you seem to be one intolerant person.  If you don't mind-of even if you do, es ist mir wurst, I will continue to write about having pain, crap or not.  I suppose that you would prefer that the rest of us untermenschen who have pain and don't do what you tell us to should just stop writing to the site as well.  Typical new-age facist you are, chia-pet.  I don't recall ever suggesting that you stop posting.  I actually enjoy reading your stuff-gives me a good laugh and takes my mind off of my pain-hey, that's non-traditional and my doc didn't prescribe it!  Maybe I'm slowly coming around to your way of thinking (NOT)!  Don't get your knickers in a twist so easily, life is too short. [smiley=laugh.gif]

Title: Re: no longer chronic
Post by Flash on Apr 3rd, 2005, 8:38am
*cough*

12 years
10 prevented episodes (but you can just pretend that I went into spontqaneous remission)
10 episodes aborted within the first week (but you can just pretend I'm a lying sack of shit that hangs out here from time to time because he's got nothing better to do... I mean it's not like I've got 3 motorbikes in my garage vying for my attention or anything...  DOH)
2 episodes aborted within 10 days
2 episodes running full term

As for psychosis... ever read the bit about SUB HALLUCINOGENIC DOSE?

We have treatment reports from over 200 people.  None of them are psychotic.

Are you aware that hallucinogenic drugs are also being used to treat certain mental illnesses?

Are you aware that they are being used to treat alcohol and drug additiction, including addiction to conventional prescription meds?

Title: Re: no longer chronic
Post by Ueli on Apr 3rd, 2005, 9:13am
PCMCCK,
*positive light and energy* is a metaphor used by miapet to express her good wishes to all.

If you want to interpret it in terms of physics, please do it correctly. A battery stores chemical energy and the + and - marks on the contacts have nothing to do with energy, they indicate the polarity of the electric potential, and the direction of the current when a load is connected.

A (metaphorical) example of negative light: your posts shed negative light on its author.

[smiley=smokin.gif]


Title: Re: no longer chronic
Post by Pinkfloyd on Apr 3rd, 2005, 1:38pm

on 04/03/05 at 03:48:59, PCMCCK wrote:
Pinkfloyd's quote by C.S. Lewis seems very appropriate to this site.  Forgive me for daring to raise questions about the sacred mushroom.  


No one has a problem with questions about the sacred mushroom. It's encouraged actually. Personal attacks are a different story around here. I guess if you can't find substance to attack the message, the messenger is the next best target. Childish, but you must have expected to reap what you had sowed.


on 04/03/05 at 03:48:59, PCMCCK wrote:
Please continue to encourage other sufferers to discontinue their medications because their doctors don't know anything any how and encourage them to take hallucinogens-by the way,


I will do so, thank you for the suggestion.
I understand this all sounds much like a snake oil. All the positive testemonials. We have often stated (should you ever do any research here on old threads) that we learn more from the unsuccessful treatments and encourage those to be reported.
This is one thread, basically about one person's continued success. Please don't anyone take this one report as enough evidence for the efficacy of mushrooms. Don't make it out to be any more than it is.
Do I think hallucinogens are safer than eating enough prednisone to cause AVN? Yes. Safer than implanting electrodes? Yes. Safer than chemically, radiologically or surgically destroying the offending nerves? Yes. Longer lasting than most if not all conventional meds? Yes. Safer than drilling holes in their skulls to wrap nerves in teflon? Yes. Safer than the much touted triptans? Yes. All things prescribed by doctors. Doctors didn't outlaw hallucinogens, polititians did. They have to follow the law if they want to continue practicing medicine.
Now, water is also safer than all those things I listed, but water does not break cycles, mushrooms do in many cases. As with every decision in life, the risks and benefits must be weighed.


on 04/03/05 at 03:48:59, PCMCCK wrote:
a disclaimer stating that they are not encouraging people to use hallucingenic or other illegal drugs, that they are just providing information and then go on to tell people how to grow them and take them-very morally courageous!  Do any of you know the possible adverse effects that hallucinogenics can have upon someone with an underlying psychiatric illness?  Perhaps that should be required reading.  


The disclaimers have nothing to do with moral courage. They have to do with staying out of jail and being able to continue to offer the information without it being pulled off the internet by polititians that don't suffer from clusters.
And yes, we have read about possible adverse effects, thank you. Have you any additional studies that show these adverse effects you'd like to share with us? Shall we compare Imitrex deaths to mushroom deaths in headache prolaxis?



on 04/03/05 at 03:48:59, PCMCCK wrote:
please don't encourage them to take your drugs-that is something that should be decided between patient and doctor and my main concern is that someone will be harmed by discontinuing their treatment by their physician in favor of "unconventional" or "alternative".  


Let's be honest here shall we?
We aren't suggesting cancer patients discontinue their life saving medications and use coffee enimas instead.
We are offering up our experiences so others may decide (or not) if they want to try something that might work better for them than conventional treatments.

Do I worry about someone being harmed in the future, yes. Do I worry about the people that are currently being harmed by "conventional" treatments that have been decided between doctor/patient? Yes. Do I feel bad when I see people here lose relationships, their homes, their jobs, their lives, while on "conventional" treatments? Yes.
Every medical breakthough should be (must be) looked at closely. If they were looked at more closely, we wouldn't have problems like the medical community has approved such as putting mercury in vaccines, Vioxx and Thalidomide for pregnant women.

Bobw
(I'll bet you have a mpeg of Reefer Madness on your hard drive, don't you?)

Title: Re: no longer chronic
Post by Chillrmn1 on Apr 3rd, 2005, 6:59pm
Mia,

Glad you and "D" are still doing well!!

Positive Light and Energy To You Both!!

Sincerely,

Bob

Edited to add: Pay no attention to the negativity by some.

Title: Re: no longer chronic
Post by jokrs2 on Apr 4th, 2005, 1:02am
"Pain Free" is what it's all about. I've taken the doctors meds and NOTHING worked until I took 2 HBWR seeds. Yes, Kudzu works better for me than the triptans which worked better than the opioids which worked better than antidepressants. The HBWR did what all of the others could not, "removed me from the shadow world for 15 hours with 32 hours pain free for the first time in over 13 years". And I will be dosing again on wednesday because I know how the human body works. It has a tendency to gravitate to what it get's used to. If the problem occurs in the mind it has to be changed THERE. If I can swish down a little bit of liquid without hallucinating once a week and get better relief than eating 10 pills a day....OK I just convinced myself again...wednesday it is! This is not bucking conventional wisdom, this is using it. Now back to my bowflex. ;;D

Positive energy and light...Gotta love it! Keep it going Mia & D, Thanks Bob

Title: Re: no longer chronic
Post by mynm156 on Apr 4th, 2005, 1:08am
There Is A GOD!!!!

Good Deal

MYNM156

Title: Re: no longer chronic
Post by BobG on Apr 4th, 2005, 4:03am
Here's my 2 cents worth...........

Miapet started this thread 11 months ago to let us know about success with the schroom treatment. For 11 months this thread has been on the first page. That, IMHO, makes this one of the most important threads ever to appear here.
It has greatly deteriorated in the last few days. That is not good. Please, lets move on and keep this thread what it has been for 11 months. It is just to important to lose it all now.

Thanks Mia.


PCMCCK, your attitude needs a little adjusting.

Title: Re: no longer chronic
Post by miapet on Apr 4th, 2005, 9:36am
We just want to thank everyone for all of the support y'all have given us.

*positive light, energy, and much love* to everyone . . . may you all benefit and enjoy from pain free time . . no matter what your method of battling the beast is . . .

D & miapet

Title: Re: no longer chronic
Post by nani on Apr 4th, 2005, 9:53am

on 04/04/05 at 04:03:04, BobG wrote:
Here's my 2 cents worth...........

Miapet started this thread 11 months ago to let us know about success with the schroom treatment. For 11 months this thread has been on the first page. That, IMHO, makes this one of the most important threads ever to appear here.
It has greatly deteriorated in the last few days. That is not good. Please, lets move on and keep this thread what it has been for 11 months. It is just to important to lose it all now.

Thanks Mia.


PCMCCK, your attitude needs a little adjusting.


So true, Bob. Mia and D...so happy for you! Happy for anyone who finds something that works!
*POSITIVE LIGHT AND ENERGY*  ....   :)   nani

Title: Re: no longer chronic
Post by Bob P on Apr 4th, 2005, 10:17am

Quote:
"I've tried the "shrooms" and they didn't work."

Hey PCMCCK -
I've tried the "shrooms" and they didn't work.

Title: Re: no longer chronic
Post by vig on Apr 4th, 2005, 10:44am

on 04/04/05 at 10:17:42, Bob P wrote:
Hey PM -
I've tried the "shrooms" and they didn't work.


From this same page of threads...

[quote author=Bob P]
« Reply #25 on: Mar 29th, 2005, 11:10am »
Not sure what to attribute it to but the Sunday night hit was a laugher and last night I didn't even get out of bed.  It was more of a feeling of one starting but never any pain.

Either:
The shrooms are kicking in
The kudzu is kicking ass
I'm too old and ugly to have real clusters anymore.

I'm afraid I'm not going to be much good as a test subject this time around since I'm jumping treatments so quickly.  Sorry about that, but no pain is good.
[/quote]

Title: Re: no longer chronic
Post by Bob P on Apr 4th, 2005, 11:17am
And after last night's 40 minute Kip 8 I'd say the shrooms didn't work, the kudzu didn't work and I'm not old and ugly.

A question for PCMCCK - Are you a doctor?  I thought I saw a thread where you said you don't prescribe Elavil anymore.

Title: Re: no longer chronic
Post by vig on Apr 4th, 2005, 11:30am
The problem with switching meds so quickly is that you can't really make ANY kind of definitive conclusion....


Title: Re: no longer chronic
Post by Sophie on Apr 4th, 2005, 12:43pm
I second the motion to get this thread back on track.
                                                                 Sophie :-X

Title: Re: no longer chronic
Post by PCMCCK on Apr 4th, 2005, 1:52pm
Thank you, Bob P., for having the courage to write in and say that the mushrooms didn't work.  I think that the thread is on track if we hear from those who do not claim success with this treatment.  I really do believe that there may be many other CH sufferers out there who have tried mushrooms without success but are reluctant to write in because such messages are unwelcome.  As for my "attacking" miapet, I did not start that-my remarks were mild compared to the private message that she sent to me.  I am sure that she is a fine person but if this site is going to be of real help to others, we must welcome those who have opinions or experiences that differ from the majority of people who send posts here-it is, I must say, somewhat of a clique and that should not be.  If getting this thread back on track means continuing with the "if you are not with us you are against us" mentality, then all meaningful purpose is gone and it will just remain a "feel good" fan club.  I do recall reading one of the websites referenced here in which it said that the effectiveness of the mushroom treatment cannot be adequately measured because those for whom it did not work tended to drop out and not give feedback; I do hope that Harvard conducts it's study and do hope that it can scientifically prove the effectiveness of this treatment, but until then all we have is anecdotal evidence and a skewed sample.  Once again, I thank Bob P. for writing in and hope that others do as well so that this thread will present a more balanced picture.  I have achieved my purpose-and without using obscene language (and if you are going to use such language, please be more creative-there is a wonderful world of colorful curses out there that are so much more interesting than the usual fuck and shit, etc.).  Best regards to all, best wishes for pain free days and nights and thank you for an interesting ride!  Auf wiedersehen! [smiley=headbanger.gif]

Title: Re: no longer chronic
Post by Margi on Apr 4th, 2005, 2:03pm
my husband is another one the shrooms eventually failed, however the popular school of thought on that from the busters is that he did it wrong (even though nothing was done different that in his previous attempts during remission, but I'm sure there will be a post following mine to discount this.)  Anyway, I won't go into all of it again - I'm sick to death of it.

However, this thread that Mia started had the intent to celebrate her husband's success and we are ALL happy for them that the remission continues because of the shroom therapy, and for everyone else who is experiencing the same success.    The busters have put in an amazing amount of time and research to this and, for that, they should be commended.  They do have a high success rate and, in my opinion, any ONE clusterhead that finds THEIR magic relief should be celebrated.  PCM, I think perhaps you might get a better response to your questions if you started a new thread, rather than to try to change the celebratory feeling of this one.  No sense raining on Mia and D's parade.  They've both worked hard to maintain their success and, if Mia wants to wish you positive light and energy, let her do that.  Live and let live, ok?

Title: Re: no longer chronic
Post by miapet on Apr 4th, 2005, 2:38pm
Thanks Margi *SMILES*

Again, thanks to y'all for keeping us going.  I remember all the help and support from ALL the clusterheads when i was frantically looking for answers . . . and, as MOST OF US feel/believe . . .may you all be p/f for EVER . .no matter what you choose to battle the beast with.

*POSITIVE LIGHT AND ENERGY*
miapet

edited to remove myself from the bitterness and negativity.

Title: Re: no longer chronic
Post by BobG on Apr 4th, 2005, 4:00pm
Amen Margi.

Title: Re: no longer chronic
Post by Bob P on Apr 4th, 2005, 4:17pm
I kinda like PCM.  We have a lot in common:

German
Speaks his mind
Can throw a good shot
Like to piss off shroomheads

I'd hoist a cool one with this dude.

Title: Re: no longer chronic
Post by Pinkfloyd on Apr 4th, 2005, 4:43pm

on 04/04/05 at 13:52:59, PCMCCK wrote:
 I do recall reading one of the websites referenced here in which it said that the effectiveness of the mushroom treatment cannot be adequately measured because those for whom it did not work tended to drop out and not give feedback;  [smiley=headbanger.gif]


I'd like very much to have this thread get back to what it was...an updating report or one persons (families) experiences. But,...
1) This thread is and was never intended to be, nor should it be misconstrued as a testimonial on how effective this treatment is or is not, for everyone. No one makes this one case out be anything more than what it is, except you. There are PLENTY of threads here discussing other people's successes and failures. So, please stop making it out to be something it is not. ....stop being a jerk.
3) Feel free to enter a thread where someone has changed their life for the better because of Imitrex and prednisone and congratulate them all you want. We celebrate all pain free time here. Let me know what thread it is and I'll join you there.
4) Yes, thank you BobP for helping make your conjecture about all these so called missing reports of failure....which is now being repeated as truth and fact.
I suggest that PCMCCK find this "website" that makes this claim of all the failures in hiding.
Clusterbusters and Harvard are tracking everyone that comes forward that says they are about to try this treatment, and follows them through the treatment....so we can be aware of all successes AND FAILURES.
5) If you stop and think about it....if there is any reason for someone to try this treatment and disappear without reporting the outcome....it would be the success stories, not the failures. Many people that have success may disappear simply because of fear of criminal prosecution or having the one thing that does work, taken away from them. They have much more to lose than anyone reporting failure. What does one reporting a treatment failure have to lose? They most likely will never use it again and certainly won't be in any legal trouble. No one has ever been arrested for saying..."I ate a magic mushroom last week."
6) If there really is someone out there afraid to report a failure because I might call them a bad name.....please do not fear me...for I am but pixels on a screen. Please come forward for the sake of science. I promise to be gentle and respectful.
7) I'm sorry if you are a stockholder in Glaxo.....but you can always write off the loses.
8) If you are a doctor, as you intimated, please at least consider this treatment option for those people you give up on, before suggesting they go through microvascular decompression.
9)If you are a doctor as you intimated, please let us know your specialty. I'd like to know which medical terms I can use of which you'd be familiar.  

You have acheived nothing other than to define yourself.....Drek auf dem teller

Bobw

Title: Re: no longer chronic
Post by jokrs2 on Apr 4th, 2005, 4:51pm
Thank you Bob (Pink) ;;D
And now it's back to the celebration for D & Mia  [smiley=laugh.gif]
Is it another PFD, Mia?  Hope so! Joe

Title: Re: no longer chronic
Post by Pinkfloyd on Apr 4th, 2005, 4:59pm

on 04/04/05 at 16:17:38, Bob P wrote:
 We have a lot in common:
.


Ain't that the truth. You sure he's not your brother?


on 04/04/05 at 16:17:38, Bob P wrote:
Like to piss off shroomheads
.


I look forward to the day you and your brother start your own thread entitled, "No Longer misosophists"

I see the last dose of shrooms didn't leave you any more enlightened than before either. Maybe you're right Bobp...shrooms may have no effect on you. They say they're magic...not miracle mushrooms.


Bobw





Title: Re: no longer chronic
Post by Margi on Apr 4th, 2005, 5:03pm

on 04/04/05 at 16:59:56, Pinkfloyd wrote:
They say they're magic...not miracle mushrooms.

Bobw


dirty pool, Pink.  But thanks for illustrating the reason people for whom the mushrooms have failed are leery to report.

Mia, my apologies for contributing to the hijack here.  Take it outside, boys.  >:(

Title: Re: no longer chronic
Post by Bob P on Apr 4th, 2005, 5:40pm

Quote:
I see the last dose of shrooms didn't leave you any more enlightened than before either. Maybe you're right Bobp...shrooms may have no effect on you. They say they're magic...not miracle mushrooms.

My day is complete!
Thanks PCM

Title: Re: no longer chronic
Post by PCMCCK on Apr 4th, 2005, 5:40pm
Thank you Mr. Floyd for proving my point.  One person writes something favorable about me and you respond as expected. with hostility and personal attacks against him...and in the same post you encourage those for which mushrooms have failed to write in and promise to treat them kindly and with respect?  You also now write that mushrooms are supposed to provide enlightenment as well as a cure?  If what you wrote is an example of the enlightenment mushrooms have provided then I do not think that any decent person would want it....and regarding your German, "dreck" means dirt, not shit as you obviously thought-before you start destroying another language, please learn your own and also explore with your therapist your obsession with shit, or do you use that word so much due to a limited vocabulary?  By the way, how many of you who admit to using mushrooms have been arrested by the police-fear of which you give as a reason that people who use your fungus successfully will stop reporting it...I haven't noticed any postings about that here....perhaps you are developing a bit of a persecution complex or want to appear to be the man who lives the life of danger by eating mushrooms and daring the police to catch him-so sad.  Practice what you preach-the part about welcoming those who differ from your opinion and treating them with respect.  I really have no intention of "hijacking" this thread; keep worshipping your goddess and telling yourself how wonderful you are. [smiley=twocents.gif]  Bob P, I would drink a cold one with you too!  Thanks! [smiley=beer.gif]

Title: Re: no longer chronic
Post by Bob P on Apr 4th, 2005, 5:49pm
PCM,

It's not you.  I've been grooming Floyd for the past few years.  Now, every time he sees my name, he snaps!  Kinda like Pavlov's dogs.

Title: Re: no longer chronic
Post by PCMCCK on Apr 4th, 2005, 5:54pm
Good work, Bob-your experiment has been a success!  He must have to sit on the toilet-actually, probably outhouse- or wear Depends each time he sees your name here.  Keep up the good work!  Good night!

Title: Re: no longer chronic
Post by Langa on Apr 4th, 2005, 6:22pm

Quote:
Amanita bisporigera  


I'm curious...what happens on these...???

Langa

Title: Re: no longer chronic
Post by miapet on Apr 4th, 2005, 6:32pm
PLEASE STOP
this thread was posted to share with all clusterheads what worked for D.  it was supposed to give hope to those who had tried EVERYTHING (or everything they were willing to try) that there can be an end (it might not be shrooms, it might be kudzu, or who knows what? but it CAN HAPPEN) . . .if this thread did that, then we're happy . . .we didn't have to post here . . .I didn't have to keep coming back and updating . . .but I thought we all CARED about being painfree? . . .
Now, if someone new comes in and starts to read this . . .they will come to the end of page 12 and wonder what the heck happened!  They won't know, it appears, that some people were just looking for a way to attempt to derail this thread . . .they won't look through the archives and/or old posts to see what people's behavior and writing has been like all along . . .

I'm sick to see that some people seem to joyful dancing on our happiness . . .that they can't understand how we might feel, after 20 years of being a CHRONIC CLUSTERHEAD we might be ecstatic beyond belief at the pain free time we have had . . .or that y'all don't realize that my darkest fear is that the beast may rear it's ugly head in our home again . . .or that he has kids who NEVER knew him without a headache . . . until now . . or that he too has lost all of the things y'all have lost . . .

I'm ashamed of the bickering and bitterness . . .why can't y'all be happy for ANYONE who is enjoying some pain free time???   Why seek to destroy beauty in a person's life???

I'm going back and deleting my posts that are anything but the reports on D's continued p/f time . . and my thanks for support from the people who support us in both our PAIN and our PAIN FREE times . . .

*POSITIVE LIGHT AND ENERGY*
miapet

Title: Re: no longer chronic
Post by nani on Apr 4th, 2005, 6:37pm
Congrats on D's PF time, miapet!!! May it last forever!!!
Love to you both, nani

[smiley=shore.gif]  

Title: Re: no longer chronic
Post by rextangle on Apr 4th, 2005, 6:46pm
Mia, I'll remove my posts too out of respect for you....
May D remain PF!!!
Cheers,
Rex

Title: Re: no longer chronic
Post by E-Double on Apr 4th, 2005, 6:52pm
Wishing you both a lifetime of PF time.

Hugs!!

E :)

Title: Re: no longer chronic
Post by miapet on Apr 4th, 2005, 6:53pm
nani, thank you for your continued support!
e-double . . .ditto *smiles* we appreciate yours too!
rex, i appreciate you defending us (and this thread) . . .you're a wonderful person *smiles*

update:  watch for Wednesday's post .. .my fingers are itching for it to get here!!!!

*positive light and energy* *dances out humming*
miapet

Title: Re: no longer chronic
Post by rextangle on Apr 4th, 2005, 6:55pm
Mia, I look forward to read another great report!

Wishing everyone PF lifetime!

Peace and out... time to dose!

Rex ;)

Title: Re: no longer chronic
Post by Flash on Apr 4th, 2005, 7:47pm
Sorry but please understand that I MUST respond to certain points raised on this thread however distasteful.  

There are people who have tried shrooms and failed.  Even if we include all of those instances where the person failed to detox, or kept taking conflicting medication, or made one half assed attempt, or took some unknown mushroom that was the right colour, or just plain lied.  Even including all those... this treatment has a higher % rate of success than any other.  It is the only treatment that has turned chronics episodic, that has extended the remission time for episodics, that is virtually non-toxic.

The danger here is not in people being too scared to report failures - because they do.  The danger here is people posting misleading information that might serve to discourage someone from trying what is (like it or not) the only truely effective treatment for CH.

BobP has his own agenda when it comes to shrooms.  He's done it twice.  Both times he's deliberately and conciously gone against our advice and taken it in conjunction with other medication.  This last time he started with 3.5g of dried shrooms and took them for 1 week along with melatonin and verapamill.  Then immediately he stopped taking them he started on kudzu which is also known to conflict (and vice versa).  Then he proclaimed both treatments to be worthless.  IMO it's not the treatments that are worthless.

Then we have Margi.  Margi tells us that the shrooms didn't work for her husband.  But that's not strictly true.  Search through these forums, and the forum before this one and you'll see umpteen posts from Margi on how well the shrooms did work for her husband, and for a not inconsiderable time period.  In fact out of the 4 times that Mike took the shrooms they worked like magic on 3 occasions.  But the fourth time Mike waited until he was at the peak of his episode before taking the shrooms and encountered some problems.  He then embarked on various prescription drugs that are now implicated in extending episodes and even turning people chronic.  Mike's episode then dragged on for much longer than usual.  And the outcome?  Blame the shrooms!  Categorically blame the shrooms.  Not only blame the shrooms but deny they ever worked in the first place, or at best claim they stopped working.  How can anyone claim something has stopped working after 1 failure?  So why the unreasonable behaviour?  Hmmm.

I know of an instance where someone claims the shrooms turned them chronic.  What's omitted is that the effects of the shrooms as described by this person are more usually attributed to amanita muscarina - which is an altogether different type of mushroom.  But hey - they were sourced on the street so no wonder!  Also ommitted is that this same person was on guess what type of prescription meds...

Now there's PCMCCK who's never even tried mushrooms.  In fact he's only posting on this thread because he wants to cause trouble.  If he really wanted to find out who the shrooms haven't worked for all he's got to do is start a new topic entitled "Please tell me of your shroom failures".  Instead he comes here and suggests that someone whos' been chronic for 20 years entered a spontaneous remission that coincided with EXACTLY the same time they embarked on the shrooms.

I've seen plenty of people fail with shrooms... but most of them have later gone on to detox, establish the most effective dose, and are now having some degree of success.

The way I see it there's 4 types of clusterhead:

A) Those that have it mild / infrequently / of short duration and don't mind if they have to live with some pain now and again.  These are the 'lucky' ones.

B) Those that use CH as an excuse not to live.

C) Those that would do ANYTHING to rid themselves of CH - we call oursleves Clusterbusters.

D) Those for whom CH has become a way of life that involves spending hours every day posting to this forum.  I've been visting here for 6 years and some people that have appeared in the past month have already racked up more posts than me LMAO!

If anyone out there falls into category C) then get in touch and we'll help you.

Title: Re: no longer chronic
Post by Margi on Apr 4th, 2005, 8:08pm

on 04/04/05 at 14:03:38, Margi wrote:
(even though nothing was done different that in his previous attempts during remission, but I'm sure there will be a post following mine to discount this.)


wish I'd bet money on this...coulda made some bucks here.   ::)

Mia, keep posting about your success and don't delete your posts.  There are those of us out here who are really pulling for you and D, ok?  ;)  Keep up the great work and keep reporting in!




Title: Re: no longer chronic
Post by Jonny on Apr 4th, 2005, 8:16pm
http://im1.shutterfly.com/procserv/47b4da30b3127cce9fbec182e52100000016108AZM2bNk5bM6

And he's fucking DEAD!!

Title: Re: no longer chronic
Post by Ueli on Apr 4th, 2005, 8:27pm
PCMCCK,
Whether "Dreck auf dem Teller" or "Scheissdreck auf dem Teller", there is no big difference. Your opinion is worth less than either.  :(

Title: Re: no longer chronic
Post by TxBasslady on Apr 4th, 2005, 9:02pm
Mia,

I have read every single post since you started with D's success and PF time.  I have totally enjoyed them all!

Thank you for taking the time to post the updates.  PF is great!

As you know, your's is not the only success story re the shrooms, therefore it's clear that it works for CH, for alot of folks.   We don't all have success with the meds...cause we're all different.   I have said before....if we were the same, then we would all be taking the same meds.   It's clear that we have success and failures along the way.

Please keep on with the updates.   It makes me smile to read the happiness in your posts.

Continued good luck, sweetie

Jean

Title: Re: no longer chronic
Post by jokrs2 on Apr 4th, 2005, 9:31pm
Mia, I totally understand after all, I've been  chronic for 20+ years. My whole life had become wrapped around pain, and my children have seen me in TOO many pain situations. In my belief there is an entity that wants to steal your joy if it can and there are a couple of people who posted nothing less than that. They want to steal your joy, otherwise they would have started their own post, and maybe titled it, "shrooms in our opinion, take it for what it's worth" [smiley=huh.gif]. Last weekend LSA provided my first break in shadows in over 13 years, and they can't steal that! ;;D. As respect for you and D, I will remove my post's when the spewers of the negative, who want to steal your joy remove theirs. Staying in the light, Joe

Title: Re: no longer chronic
Post by purpleydog on Apr 4th, 2005, 11:22pm

on 04/04/05 at 20:27:56, Ueli wrote:
PCMCCK,
Whether "Dreck auf dem Teller" or "Scheissdreck auf dem Teller", there is no big difference. Your opinion is worth less than either.  :(



Mia, I am so glad D is doing so well :) Please be sure to keep us updated on his progress, as usual. It gives us all hope that this too can end.

Title: Re: no longer chronic
Post by Mr. Happy on Apr 5th, 2005, 12:09am

on 04/04/05 at 21:02:17, TxBasslady wrote:
I have read every single post since you started with D's success and PF time.

Me too. All 600 megs worth. It's sort of evolved from One Man's Success to the Hemmingway of Headaches. Let the arguements progress elsewhere. There's a man on a little boat controlling a large fish with a small rod. I can't wait to see how the story goes.

Of course, one more of those *positive light and energy* things, and I'm gonna burn all my Zappa records, and put out a contract on Moonbeam. Damned hippies.

Well worth the price of admission.
RJ

Title: Re: no longer chronic
Post by pam s on Apr 5th, 2005, 11:15pm

on 04/05/05 at 00:09:58, Mr. Happy wrote:
Moonbeam


Moon Unit.

Mia, more than any other thread in this group, yours has given more hope to more people. I remember reading with astonishment when you were posting "2 WEEKS PF!".

I'm sure those who are questioning the alternative treatment are just voicing their reservations in the only way they can, God bless them. :-)

Title: Re: no longer chronic
Post by PCMCCK on Apr 6th, 2005, 8:37am
 [smiley=sgrin.gif] [smiley=sgrin.gif] [smiley=sgrin.gif]


O  U  R  *
N  A  M  E  S  *  
A  R  E  *
L  E  G  I  O  N  * !!!


[smiley=sgrin.gif] [smiley=sgrin.gif] [smiley=sgrin.gif]

Title: Re: no longer chronic
Post by miapet on Apr 6th, 2005, 9:22am
46 WEEKS PAIN FREE
Thanks to everyone for their continued support in our p/f time.  
We have been able to do more in the past 46 weeks than we have ever dreamed of doing for the rest of the entire time we have known each other
Change is never all easy .. .our family has had many changes take places during this time.  One of the biggest is that D doesn't respond with the pain of the beast anymore . . .so we have learned what the real D is like.  And know what?  We get new surprises everyday!!
This weekend we all went to the gulf .. .we had breakfast together and enjoyed the sun and beach  .. .during the days of the beast, we could have NEVER done that.
Wishing everyone painfree time, no matter what method they choose to battle the beast.
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by nani on Apr 6th, 2005, 9:38am
HOORAY!!!

I'm happy dancing!!! Enjoy, enjoy, enjoy!
[smiley=shore.gif]

Title: Re: no longer chronic
Post by Margi on Apr 6th, 2005, 9:49am
Way to go, Mia and D!  So nice to hear that a cluster family is out there enjoying life again!!  Keep up the great work!

Title: Re: no longer chronic
Post by LeeS on Apr 6th, 2005, 11:33am
*YAY* 8)

Title: Re: no longer chronic
Post by jokrs2 on Apr 6th, 2005, 2:20pm
Way to go D and Mia! Great news!!! ;;D. Keep it going.
Blessings, Joe

Title: Re: no longer chronic
Post by rextangle on Apr 6th, 2005, 3:00pm
Congrats!!! Great news!!!  :)

Title: Re: no longer chronic
Post by Flounder on Apr 6th, 2005, 5:51pm
WOOOOHOOO!!


Title: Re: no longer chronic
Post by Tiannia on Apr 6th, 2005, 7:23pm

on 04/06/05 at 09:22:55, miapet wrote:
  our family has had many changes take places during this time.  One of the biggest is that D doesn't respond with the pain of the beast anymore . . .so we have learned what the real D is like.  And know what?  We get new surprises everyday!!

*positive light and energy*
miapet



You know Mia you scared me there for a sec. THought you might say something like.. "so we have learned what the real D is like.  And know what? "  He is a butt!!!   http://members.iinet.net.au/~vroncol/Smiley_gifs/d'oh.gifhttp://members.iinet.net.au/~vroncol/Smiley_gifs/bumwiggle.gif

I am so very happy for you hun.  And D.  It is great to know that this is not a no end tunnell that so many of us look down.  

Blessed Be...  http://members.iinet.net.au/~vroncol/Smiley_gifs/rose.gifOh and give D a great big hug, just for shits and giggles.  http://members.iinet.net.au/~vroncol/Smiley_gifs/grouphug.gif

There is to alternative treatment (no matter what it is) http://members.iinet.net.au/~vroncol/Smiley_gifs/weed1.gif

-Tia

EDIT:  By the way...  THIS post DESERVES 14 pages and 333 responses.  http://members.iinet.net.au/~vroncol/Smiley_gifs/the20wave.gif

Title: Re: no longer chronic
Post by Renee on Apr 7th, 2005, 4:22am
[smiley=thumbsup.gif]

Congrats D and Kim!!!

What an inspiration y'all have been to so many of us.

When we are all old and gray and wearing bi-focals to see the screen, I hope to logon and see page 260 and of this thread filled with 10 plus years of pf times and the adventures y'all have experienced.

[smiley=hug.gif]  Renee

Title: Re: no longer chronic
Post by 1MajorPain on Apr 7th, 2005, 11:02pm
Just wanna know...has life ever been better? You and D? rock on Mia! I know this isn't the end...just the beginning and hopefully a cure!!!

Major
P.S.
made ya look....lolol

Title: Re: no longer chronic
Post by miapet on Apr 8th, 2005, 9:45am
thank you all!!!
We're loving every moment we have *smiles*

hehe Tia .. .yeah, it did kinda sound that way *L* BTW, D loved the hug . .and the shits and giggles L*L*

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by wifesupporter on Apr 8th, 2005, 8:12pm
I just wanted to add my [smiley=twocents.gif]  Way to go and heres to many more. [smiley=spit.gif]

Title: Re: no longer chronic
Post by miapet on Apr 11th, 2005, 9:01am
We just want to thank EVERYONE for your continued support!!!!  And, major.  . nope, life has never been better *g* now, if I can just get D to put some lotion on my sunburn *L*
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by 1MajorPain on Apr 11th, 2005, 11:20am
well...here is wishing a sunburn is the worst pain you and D have to suffer in the future!

Rock On!

Major

Title: Re: no longer chronic
Post by E-Double on Apr 11th, 2005, 2:31pm
Always glad to hear it!!! :)

Title: Re: no longer chronic
Post by miapet on Apr 13th, 2005, 8:43am
Thanks major and e-double *g*

Well, I have some reporting to do.

I am still counting p/f weeks, and would like to claim 47 weeks p/f . . .but there is a blip on our 47th week.

This week, we had a headache .. .yes, we knew it was the beast . . .we got the hot poker and everything.  It only lasted about 10 to 15 minutes, and we used nothing to abort . . .we rocked together on the edge of the bed . . . it was about a k-3.
That said, how do I continue claiming that shrooms work?  Well, here's my thougth process . .and believe me, I have thought long and hard . . .and boy, is the red-tail-hawk coming out in me, I'm all over  D and watching again!
Anyway, stress, alcohol, and shrimp are HUGE triggers for D (stress and alcohol are common for lots of y'all, I know) . . .anyway, this board stresses him more than y'all can imagine . . .so, for the most part, he stays away from it . . .. but, I told him about the mess that was happening last week, and he came in and read the whole thing . . .and he got a headache . . .
So, what did we do?  Well, I freaked out *L* but, to prove that he is not in some 'spontaneous remission', this rogue hit proves that the treatment still works for D .. .we tested this weekend with LOTS of beer (we were at a party) . . .and guess what?  NO HEADACHE . . .then, the next day, we ate shrimp . ..and guess what?  NO HEADACHE!
So, do we still believe in the shroom?  YES . . .have we taken anything else? NO . . .are we continuing to enjoy a p/f life?  YES .. .is D still a clusterhead?  YES . .is he a cluster sufferer?  NO!!
Anyway, we had a rogue  hit . . .but the power of the shroom didn't allow the beast to take hold *smiles*
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by JJA on Apr 13th, 2005, 10:07am
I guess one headache a year isn't too bad for a chronic.

Jesse

Title: Re: no longer chronic
Post by LeeS on Apr 13th, 2005, 11:05am
*YAY* Mia!

Tell D to keep away from the board for at least another 47 weeks.

-Lee

Title: Re: no longer chronic
Post by miapet on Apr 13th, 2005, 11:59am
JJA .. .1 h/a per year is way livable *L* especially compared to the 20 pervious years of 1 per day being a rocking day *L* and 20+ being the suckage times . . .. hahahahaha

Lee . . .I'm not letting him NEAR this board again!!!  AND, I'm not telling him anything stressful from it!

I admit, the rogue scared me .. .but life is good again *smiles* and we're still p/f . . . .

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by Redd715 on Apr 13th, 2005, 1:40pm
http://pages.prodigy.net/rogerlori1/emoticons/mushsmile.gif

;;D

Title: Re: no longer chronic
Post by TxBasslady on Apr 13th, 2005, 2:04pm
I love this thread!!!!!!!!!!!!!!!!!!!!!!!

What a great story....

Jean

Title: Re: no longer chronic
Post by jokrs2 on Apr 15th, 2005, 6:03pm
Hi Mia. Tell D for me that I'm very glad that the hit only went to k3 and didn't last very long. I still consider there to be much life and joy in this thread. Be blessed, Joe

Title: Re: no longer chronic
Post by Giovanni on Apr 15th, 2005, 8:39pm
47 weeks with one kip 3 headache is nothing less than remarkable for a former chronic.  I was convinced at the very beginning that D would respond in a positive way to this treatment, but he has exceeded my expectations.

I can not claim the degree of success that D has had, but I am at least 90% better than I used to be before this treatment.  I should be in full blown cycle now and am not.  Anyway, may you two continue to enjoy these times.  Eat plenty of those Gulf shrimp, drink much beer and enjoy yourselves. ;;D

John

Title: Re: no longer chronic
Post by miapet on Apr 16th, 2005, 9:57am
Thanks everyone!

John, we wouldn't be here without you!  I remember all the frantic emails, messages, and calls I made to you . . .asking questions . . .looking for reassurance . . .asking for help . . .and you were ALWAYS THERE for us!!  When it came time to meet Flounder, you were there to encourage us to go . . .and you were right, he's a great guy! *g*
Oh, and everytime D puts on that raingear . . .he says, make sure you tell John how much I appreciate this! (He LOVES that rain suit!!!!)
Hopefully, this summer, we'll all be able to get together!
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by LeLimey on Apr 16th, 2005, 4:11pm
Mia for me the fact D got hit RPOVES the shrooms are working... otherwise you would never know that he hadn't just gone into a remission like lucky old Charlie has! Whilst I'm sorry he got hit, I wouldn't wish that on anyone - I'm sort of glad in a way because it does prove that he IS still at risk from the beast and the shrooms are acting as a flippin' great force field!
Way to go! I'm delighted!

Title: Re: no longer chronic
Post by miapet on Apr 18th, 2005, 9:18am
LeLimey, we agree . . .the fact that D had that k-3 just proves to us more strongly that the shrooms work *smiles*
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by PCMCCK on Apr 18th, 2005, 12:46pm
I am confused; "D" had a cluster attack, ending the 46 or whatever weeks pain free and that proves that mushrooms work?  The logic escapes me, but then again, this thread is not about logic it is an ego trip for miapet.  Perhaps I read the posting incorrectly, but it is my understanding that "D" had the CH episode and yet miapet wrote that "we" had an attack-CH by proxy, sympathy pains or Munchausen's syndrome by proxy?  One last question and then I'll go for a bit because I don't want to "frighten" "D" by my evil posting:  if the mushrooms work so well, why do we not see many, many more people having similar "so many weeks painfree", including, of course, details of their perfect lives, excessive alcohol intake and so on.  I am sorry that D had a relapse and I do hope that he does not have another one but I do wish that some of the "sweetness" on this thread would decrease because each time I read it I gain a pound and have to go to the dentist to fill a new cavity.

Title: Re: no longer chronic
Post by Margi on Apr 18th, 2005, 12:59pm

on 04/18/05 at 12:46:37, PCMCCK wrote:
but then again, this thread is not about logic it is an ego trip for miapet.  Perhaps I read the posting incorrectly, but it is my understanding that "D" had the CH episode and yet miapet wrote that "we" had an attack-CH by proxy, sympathy pains or Munchausen's syndrome by proxy?  


you know, PCMCCK (tragic that your parents named you something unpronounceable like that), this has to be perhaps THE meanest thing I've ever seen on this website.  There are SO many flagrant personal attacks in your post that I don't know where to start.  Oh wait, yes I do.  Mia has EVERY right to say "we" when referring to a cluster attack.  Cluster attacks affect everyone in the household, especially the spouse.  To suggest that it is Munchausen's syndrome is low.  Even for you.   >:(

This is not about ego, PCMCCK (or are you using the CM and the C to replace the letters R and I?) - it is about a clusterhead stopping their pain.  Those of us that feel or understand cluster pain rejoice in that.  You need to check your 'tude at the door, pal.  Or, at the very least, you need to witness someone you love go through a cluster attack.  Then, and ONLY then, will you be qualified to walk in Mia's shoes.

Title: Re: no longer chronic
Post by Margi on Apr 18th, 2005, 1:07pm

on 04/18/05 at 13:05:50, vig wrote:
Maybe you should stop reading it.


but that would spoil all his Munchausen fun, Vig.   ::)

Title: Re: no longer chronic
Post by Renee on Apr 18th, 2005, 2:19pm
Posted by: PCMCCK Posted on: Today at 11:46am

Quote:
I am confused


Posted by: PCMCCK Posted on: Today at 11:46am

Quote:
The logic escapes me


Posted by: PCMCCK Posted on: Today at 11:46am

Quote:
I am sorry



I think PCMCCK stated it perfectly..... [smiley=laugh.gif]

Title: Re: no longer chronic
Post by JJA on Apr 18th, 2005, 2:47pm

on 04/18/05 at 12:46:37, PCMCCK wrote:
if the mushrooms work so well, why do we not see many, many more people having similar "so many weeks painfree"


I am at 54 weeks pain free. I was pain free a year before that too, but decided to "test" the effectiveness of this treatment. It's effective for me and I drink quite a lot of beer.

Jesse

Title: Re: no longer chronic
Post by SteCo on Apr 18th, 2005, 4:29pm
I think everyone can see what has been done here and how effective the treatment is, but I felt I needed to respond for folks who are seriously entertaining this alternate therapy, as a legitiment question has been brought up IMHO.


Quote:
"we" had an attack-CH by

This is what I would consider a very loving spouse. Just like my wife....she states WE (as in she is RIGHT THERE WITH me while I am rocking and rolling, and asking if she can get me more ice/o2 whatever) had another bout w/CH's the previous night, when talking to family and friends.

Quote:
 if the mushrooms work so well, why do we not see many, many more people having similar "so many weeks painfree", including, of course, details of their perfect lives, excessive alcohol intake and so on.

This is a legitimate question for the masses. I can answer this one...when folks conquer the beast, they move ON with life....get as far away from the memory of these things as possible. Would you blame anyone for doing such a thing?? I do leave and am guilty of it for sure. It IS really as simple as that. I admire the folks that are able to stick around after cycle/abort cycle/miss cycle or break chronic to stay and educate others and help. 3 years ago I discovered this treatment. There were 2 other folks that had cycles concurrent with mine and we all tried it. All of us had success. I still have email contact with one, lost contact with the other. They (him and his loving supporting wife (like miapet)) are still having great success. (this does not include the many that still hang around, and numerous others that have obtained success since I first found out about it.)  
Why am I back?.......back in cycle and did not follow maintenance advice of the clusterbusters website, and I am paying dearly for it..NEVER AGAIN.....and I always keep an open mind for anything new that may have developed since my last cycle.....

AND the #2 reason people leave, remember I already stated #1......hassling from the occasional poster...It gets frustrating and chases many away...I have seen it before.

Miapet.......you go girl !!!!!!!! and give D my best!!! This is truly a remarkable thread.
SteCo   

Title: WRe: no longer chronic
Post by PCMCCK on Apr 18th, 2005, 5:14pm
[smiley=nopity.gif] So if people leave the board because they have gotten better due to mushrooms and have moved on with their lives, why does the author of this string keep going on and on and on and on about how wonderful she is?  What does telling us about barbeques and beer have anything to do with CH and where is the "inspiration" that she provides us all?  Why is she writing all of the posts and not the sufferer?  'Tis better to get the information first hand.  I still haven't seen the legions of people who have been "inspired" by this thread writing in and telling everyone that they have been p.f for sooo long due to the mushrooms....maybe because they are not out there.  I'd prefer to hear from the sufferer who has gotten better-let "D" make the posts, miapet-is he really so afraid to read this board as you have indicated?  Have any of you who have read this post ever wondered why the sufferer doesn't write?  Maybe he has moved on with his life but his partner needs the constant sroking that goes on here-when will it end?  How many times does one need to be told that they are wonderful?  I've also noticed a lack of support from Ms Pet on other threads when sufferers write in asking for help...very, very rarely do I see a posting from her except for the occassional *positive light and energy* cliche-I guess you get that light and energy by going out and getting blasted on beer?  I say "Free D and let him post!!!!"  Muppets! [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif]

Title: Re: no longer chronic
Post by LeLimey on Apr 18th, 2005, 5:21pm
PCMCMK I've held out on telling you what I think out of respect for Mia and trying not to hijack her thread.
If you want to slam shrooms and the users of them go ahead. Start your own thread.
Leave this one alone.
Oh and just for the record I think you are despicable. You are a mean narrow minded individual both in spirit and probably physique.
Which no doubt explains it all...
I shall look forward to seeing a thread of your own you revolting little man, and telling you what I REALLY think of you there.
Sorry Mia

Title: Re: no longer chronic
Post by Margi on Apr 18th, 2005, 5:30pm
Lelimey is absolutely correct.  Sorry, Mia.  

I'll just lie in wait for PRICK PCMCCK to attack supporters in general again and, if he needs to do this ego-masturbation again, hopefully he'll do it in another thread so he will be fair game.   >:(


Title: Re: no longer chronic
Post by SteCo on Apr 18th, 2005, 5:37pm
My wife is not a big fan of computers. I do the same for her on a message board for her. As in I post for her on her behalf. There are lots of folks like this. Not unusual at all. Some folks are computer saavy.....some not.

Beer/alcohol is a known trigger for many....myself included. And certain foods are triggers for some. Just the way it is.......
Add me to the I'm sorry list Miapet......

Pmmc ..... new thread?.....I will not post to this one anymore in trying to help you understand and answer your questions.

Title: Re: no longer chronic
Post by Ueli on Apr 18th, 2005, 7:07pm
Margi, close but no cigar  ;)

PCMCCK is the Cyrillic spelling of Arschloch.  :(

Title: Re: no longer chronic
Post by purpleydog on Apr 18th, 2005, 8:08pm

on 04/18/05 at 12:46:37, PCMCCK wrote:
I am confused; "D" had a cluster attack, ending the 46 or whatever weeks pain free and that proves that mushrooms work?  The logic escapes me, but then again, this thread is not about logic it is an ego trip for miapet.  Perhaps I read the posting incorrectly, but it is my understanding that "D" had the CH episode and yet miapet wrote that "we" had an attack-CH by proxy, sympathy pains or Munchausen's syndrome by proxy?  One last question and then I'll go for a bit because I don't want to "frighten" "D" by my evil posting:  if the mushrooms work so well, why do we not see many, many more people having similar "so many weeks painfree", including, of course, details of their perfect lives, excessive alcohol intake and so on.  I am sorry that D had a relapse and I do hope that he does not have another one but I do wish that some of the "sweetness" on this thread would decrease because each time I read it I gain a pound and have to go to the dentist to fill a new cavity.


I agree, Margi, this PRICCK is a new low in posters. What is your problem, PRICCK? Is it so hard for you to support another person's happiness, and you have to slam anything they say? If you don't like to see the updates on this thread, I have some really good advice for you. STOP READING IT!  And if you think it is too sweet for your tastes, and are gaining weight because of it, do us ALL a favor. Just  leave. I'm sure you'll be missed by no one, therefore making life much more pleasant here, all the way around.

Title: Re: WRe: no longer chronic
Post by purpleydog on Apr 18th, 2005, 8:23pm

on 04/18/05 at 17:14:37, PCMCCK wrote:
[smiley=nopity.gif] So if people leave the board because they have gotten better due to mushrooms and have moved on with their lives, why does the author of this string keep going on and on and on and on about how wonderful she is?  What does telling us about barbeques and beer have anything to do with CH and where is the "inspiration" that she provides us all?  Why is she writing all of the posts and not the sufferer?  'Tis better to get the information first hand.  I still haven't seen the legions of people who have been "inspired" by this thread writing in and telling everyone that they have been p.f for sooo long due to the mushrooms....maybe because they are not out there.  I'd prefer to hear from the sufferer who has gotten better-let "D" make the posts, miapet-is he really so afraid to read this board as you have indicated?  Have any of you who have read this post ever wondered why the sufferer doesn't write?  Maybe he has moved on with his life but his partner needs the constant sroking that goes on here-when will it end?  How many times does one need to be told that they are wonderful?  I've also noticed a lack of support from Ms Pet on other threads when sufferers write in asking for help...very, very rarely do I see a posting from her except for the occassional *positive light and energy* cliche-I guess you get that light and energy by going out and getting blasted on beer?  I say "Free D and let him post!!!!"  


You really must piss on everything you see, don't you? You are twisting words, and the only reason you are posting in this thread is to start trouble. I must say you have succeeded. Maybe you didn't get enough praise when you were a child? You must have been very depressed, huh?

The person who posts is not important. If mia chooses to post for D, then there is not a damn thing wrong with it. You have a problem with it? You are the only only one then. What do you think D will tell you that is any different than what Mia has already stated? Obviously, you have never had a significant other in your life who meant anything to you. And as far as being told they are wonderful, Mia is wonderful, she has put up with a nightmare for years. As you would UNDERSTAND, if you even have CH that is. Which I am beginning to highly doubt.

Where is the support from you on threads, too? I really don't remember seeing anything from you. Is that what life is all about for you, reciprocity? You probably don't do a thing for anyone without figuring out what you will get in return, am I right?

I'm sorry Mia. I do have some advice for everyone else... don't feed this troll anymore. He's not worth the effort.


Title: Re: no longer chronic
Post by purpleydog on Apr 18th, 2005, 8:24pm
Mia, I am so sorry to post these, you and D are doing a wonderful job of maintaining, and it is so good of you to keep posting updates, to keep us informed. As I said before, it gives us all hope as to what can be achieved. Love you both. :)

Title: Re: no longer chronic
Post by Not4Hire on Apr 18th, 2005, 8:51pm
...altho THIS does:

Please don't feed the troll(s)

I've said this before (a quote-I think it was Will Rogers): If you wrassle with a pig,  you will get dirty and he will LIKE it....

PF-since-October-2002-and-I-attribute-it-to shrooms n4h

...now go walk west 'til yer hat floats PCK-whatever.....

Title: Re: no longer chronic
Post by pam s on Apr 18th, 2005, 9:40pm
Consider this:  what sort of person most enjoys defacing public property with grafitti, upturning port-a-potties, and mooning people?  

We are almost certainly dealing with some kid -- some punk with multiple piercings -- gleefully typing the most outrageous things he can think of, then laughing into his pillow.

It is HIGHLY unlikely that an adult clusterhead, in pain and desperate to find relief, would ever bother to post anything so pointless.

This is the sort of person I think we've been wasting pixels on:

http://www.oxbloodoi.com/Gallpunk1/pukeface.jpg

Title: Re: no longer chronic
Post by purpleydog on Apr 18th, 2005, 10:20pm
Yeah, pam, and stoned to boot.  ::)

Title: Re: no longer chronic
Post by jokrs2 on Apr 18th, 2005, 11:47pm
Consider this:  what sort of person most enjoys defacing public property with grafitti, upturning port-a-potties, and mooning people?  

We are almost certainly dealing with some kid -- some punk with multiple piercings -- gleefully typing the most outrageous things he can think of, then laughing into his pillow.  

It is HIGHLY unlikely that an adult clusterhead, in pain and desperate to find relief, would ever bother to post anything so pointless.

Perfectly put Pam!
Talk about someone who doesn't support, PRICCK. I talk with Mia on a personal basis and she has been nothing but supportive, kind and wonderful. This gives me no doubt that D knows "quite well" who types for him, and loves her more than PRICCK can even imagine. I don't see PRICCK posting anywhere else except to "attempt" to damage this thread. Sorry PRICCK, YOU LOSE!! [smiley=laugh.gif]
Let the small hit be what it was.....PFD's are here again!


Title: Re: no longer chronic
Post by purpleydog on Apr 19th, 2005, 2:06am
It would seem he has gone "guest". Oh well.

Title: Re: no longer chronic
Post by jokrs2 on Apr 19th, 2005, 3:01am
Not surprising Purpleydog.
Mabe next it will be "guest" to "ghost"? :P

Title: Re: no longer chronic
Post by Chillrmn1 on Apr 19th, 2005, 5:15am
IGNORE PCMCCK. We all know what this individual is doing, he's throwing the bait out and we're taking it, all at Mia's & D's expense. Mia doesn't deserve this, we all know that, and Mia knows that too.  The worst thing we can let happen is for this great thread to be allowed to be taken the path PCMCCK wants, and seems so far he's being successful. Just ignore this person and don't let yourself get sucked into his game.

With that said, "positive light and energy" to all, especially Mia and "D"!!

Title: Re: no longer chronic
Post by nani on Apr 19th, 2005, 10:31am
Ditto the positive light and energy!!!

http://members.iinet.net.au/~vroncol/Smiley_gifs/Smileys2/firework2.gif

Keep celebrating D and Mia!!!

http://members.iinet.net.au/~vroncol/Smiley_gifs/the20wave.gif

hugs and love, nani  :)

Title: Re: no longer chronic
Post by LeeS on Apr 19th, 2005, 12:45pm
Thought I'd fallen asleep and missed Wednesday ;)

:-* to Mia

-Lee

Title: Re: no longer chronic
Post by broomhilda on Apr 19th, 2005, 9:20pm
Wishing you both continued success and pf time, this thread gives so many hope and daily smiles, please keep celebrating with us!

Best to you both

Andrea

Title: Re: no longer chronic
Post by miapet on Apr 19th, 2005, 9:39pm
Well, gosh, thank you all for your continued support for D and I!
I'm posting about 3 hours early, as life is becoming more and more hectic around here!
This makes 48 weeks with one k-3 over one week ago.  I have some information about what may have caused that 'blip' of a kip!  About 2 months ago, I took D to my nutritionist, and started working on the rest of his health.  He started on several supplements, and we (D, myself, and our nutritionist) believe the body balancing was what caused the 'blip'.  The nutritionist knows about D's CH, and he isn't attempting to 'work on' those, but, as he said, 'We are working on your body, so we might touch the CH'.  D hasn't stopped taking the supplements.  We have tested the beast with known triggers, and no more h/as, sooooooooooooo I think we can claim 48 weeks!  What do you all think?
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by Grandma_Sweet_Boy on Apr 19th, 2005, 9:43pm
That's wonderful news Mia.  You guys have done an amazing job of keeping everyone updated with this sucess of yours and D's.

Forget that mindless wonder that has now had the good grace to pull his profile.  He apparently has no clue and feels it necessary to feed his ego by seeing his words in print.  It's too bad there are people like him around.  They truly are a waste of skin.

You guys keep up the good work and continue to keep all of us posted.

Carol

Title: Re: no longer chronic
Post by jokrs2 on Apr 19th, 2005, 11:05pm
I'd claim it "big time"! ;;D Way to go!! Joe

Title: Re: no longer chronic
Post by Flounder on Apr 19th, 2005, 11:38pm
48 weeks!!!!!!!!!!!

[smiley=me&mb.gif]

Title: Re: no longer chronic
Post by Renee on Apr 20th, 2005, 4:29am
[smiley=sayyes.gif]

48 Weeks!

Congrats D and Mia!!!

Title: Re: no longer chronic
Post by Chillrmn1 on Apr 20th, 2005, 5:36am
Glad to hear things still going great!! Looking forward to seeing those weeks in triple digits!!!

Keep it going Mia & D!!!!

Bob

Title: Re: no longer chronic
Post by Giovanni on Apr 20th, 2005, 8:35am
48



;;D

Title: Re: no longer chronic
Post by lionsound on Apr 20th, 2005, 5:02pm

on 04/19/05 at 21:39:44, miapet wrote:
We have tested the beast with known triggers, and no more h/as, sooooooooooooo I think we can claim 48 weeks!  What do you all think?


I think that's FANTASTIC!!!!! :)


-lionsound

Title: Re: no longer chronic
Post by BobG on Apr 20th, 2005, 7:54pm

on 04/19/05 at 21:39:44, miapet wrote:
Well, gosh,  I think we can claim 48 weeks!  What do you all think?
miapet

I think ya'll did good.  :D

Title: Re: no longer chronic
Post by E-Double on Apr 20th, 2005, 9:02pm
Absolutely!!

Enjoy

Title: Re: no longer chronic
Post by miapet on Apr 22nd, 2005, 9:08am
Thank you all . . .*SMILES* . . . we're still counting the p/f time!!
Wishing y'all to be p/f . . .no matter what your method of battle is!
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by jokrs2 on Apr 25th, 2005, 1:43am
After 3 dosings over a 2 1/2 week period of HBWR I can now report 5 straight days without shadows and pain free. I am back to 2 kudzu in am, 1 in afternoon and 2 at night with 9mg melatonin for maintenance. Fall asleep on schedule between 1 & 2 am and wake by alarm at 6 am (to stay out of dreamstate), get my morning cup of coffee, kudzu and bowl of oatmeal. My restless leg syndrome has also gone into remission for the last 5 days too. Could the LSA be repairing that area of the brain thats been causing that? [smiley=huh.gif] ;;D  

I am going for day 6 tomorrow. No interruption of your post intended Mia & D, just sharing another good time on a great string. PFD&N's everybody, Joe

Title: Re: no longer chronic
Post by Mr. Happy on Apr 25th, 2005, 2:39am

on 04/25/05 at 01:43:38, jokrs2 wrote:
No interruption of your post intended Mia & D

Interruption? I don't think you could've given them a better compliment.

Title: Re: no longer chronic
Post by miapet on Apr 27th, 2005, 3:27pm
Jokrs *YAY* and *happy dance* may you continue getting relief!!  We are so happy for you!

Mr. Happy, EXACTLY!!!

We are happy to report 49 weeks p/f . . .thanks everyone for your continued support ..

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by nani on Apr 27th, 2005, 3:42pm
49 WEEKS!

http://bestsmileys.com/clapping/4.gif

Hooray!!!!!

I'm so happy for you and D!!!

Title: Re: no longer chronic
Post by TxBasslady on Apr 27th, 2005, 5:01pm
    [smiley=thumbsup.gif]

    AWESOME!!

I love this!!!

Congrats Mia & D.....

Jean

Title: Re: no longer chronic
Post by LeeS on Apr 28th, 2005, 9:22am
YAY and hippy dance from over the pond ;;D

-Lee

Title: Re: no longer chronic
Post by E-Double on Apr 28th, 2005, 11:19am
Many more :)

Title: Re: no longer chronic
Post by rextangle on Apr 28th, 2005, 3:28pm
May this post never end...

48 WEEKS!!! YEAAAAH!!!

Can't wait to read 480 weeks! ;)

Rex

Title: Re: no longer chronic
Post by miapet on May 1st, 2005, 11:25pm
Thanks everyone!  This is just a mini-update . . .For D, like most of y'all, stress is a big trigger . . .and have we had a lot of stress in the family recently and guess what?? NO HEADACHE!!! hehe, I'm just sooooo anxious for Wednesday to get here so I can REALLY update *g*

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by 5-string on May 1st, 2005, 11:35pm
Wonderful news!!!
I remember when this thread started. I'm very happy for you and I'm sending vibes for the big---((52))---!!

....Mark..

Title: Re: no longer chronic
Post by jokrs2 on May 3rd, 2005, 9:20pm
2 weeks "PAIN FREE" for Joe after his 3rd trial with HBWR-LSA. Re-dosing on friday. I am now able to get along without kudzu for the last 3 days pain free (so far) in preparation for next dosing. Just 9mg melatonin at night. Keep it going D & Mia!
Blessings, Joe

Title: Re: no longer chronic
Post by miapet on May 4th, 2005, 9:00am
woo hoo for all who are pain free!!! and hope for pain free to those who are in battle with the beast .. . .

D has made 50 weeks now.  

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by nani on May 4th, 2005, 9:07am
50 Weeks!!!

Happy dancing for you guys!! WhooHoo!!!

Title: Re: no longer chronic
Post by LeeS on May 4th, 2005, 10:15am
Must be Wednesday then ;;D

400 posts and 50 weeks PF!  I used to set my watch with my hits. I now set my week with this thread ;)

Congratulations.

-Lee

Title: Re: no longer chronic
Post by E-Double on May 4th, 2005, 12:05pm

on 05/04/05 at 10:15:01, LeeS wrote:
Must be Wednesday then ;;D

400 posts and 50 weeks PF!  I used to set my watch with my hits. I now set my week with this thread ;)

Congratulations.

-Lee


Well put!!!

Love it!

Eric

Title: Re: no longer chronic
Post by Tiannia on May 4th, 2005, 12:11pm

on 05/04/05 at 09:00:28, miapet wrote:
woo hoo for all who are pain free!!! and hope for pain free to those who are in battle with the beast .. . .

D has made 50 weeks now.  

*positive light and energy*
miapet


That is AWESOME!!!!!!!!!!!!!!!!!!!!!

I am so happy for all of you.  I cant imagine my life without CH right now. It just must be amazing.

/hugs
-Tia

Title: Re: no longer chronic
Post by miapet on May 4th, 2005, 3:08pm
hehe, thanks everyone *SMILES*  what a way to set a week, huh? hehe

Tia, we're so sorry that the beast if giving you soooooooo much grief . . .if there is anything we can do, please, don't hesitate to ask.

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by Tiannia on May 4th, 2005, 4:38pm

on 05/04/05 at 15:08:37, miapet wrote:
hehe, thanks everyone *SMILES*  what a way to set a week, huh? hehe

Tia, we're so sorry that the beast if giving you soooooooo much grief . . .if there is anything we can do, please, don't hesitate to ask.

*positive light and energy*
miapet


Oh Mia, you made me smile.  Actually the Kudzu is helping but I am still getting hit. I still get the sweats and eye droop and all fo the physical shit but the pain is less.  At least I am not shooting trex 3+ times a day. I have to abort a high kip about everyother day still but  I'll take what I can get.    But it is just a dream right now to imagine my life without any of it.   It is great to hear that others are getting relief.  At least I am getting some.  

Title: Re: no longer chronic
Post by miapet on May 5th, 2005, 9:07am
Tia, I'm really happy to hear that you are getting some relief.  We totally understand how some is better than none *smiles*  You are in my thoughts . . . and I keep you in my circle ...
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by Tiannia on May 5th, 2005, 2:14pm
I'll take all the energy that I can get.  We all will figure this out one day.  Hopefully we can find something that will help everyone.  There has to be somethign out there.  Somewhere.

Love and LIght, Mia and D
-Tia

Title: Re: no longer chronic
Post by jokrs2 on May 6th, 2005, 8:49pm
Ditto what Lee said!!! Going on my 3rd week now with another VERY successful dose of LSA on wednesday...actually felt it this time 8). Tia, you are in my energy and healing sights RIGHT NOW...big vibes to you magik lady, I hope you are pain free soon. Keep on rockin Mia & D and may it continue forever. Blessings, Joe

Title: Re: no longer chronic
Post by miapet on May 11th, 2005, 9:20am
Well, it's Wednesday . . .and it is now 51 weeks p/f.  

Wishing everyone a p/f eternity.

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by nani on May 11th, 2005, 9:30am
51 weeks! Yes!

[smiley=shore.gif] [smiley=thumb.gif]

Title: Re: no longer chronic
Post by LeeS on May 11th, 2005, 9:34am
Time sure flies when you're havin fun ;;D

Next week, I shall endevo(u)r to find one of those all singing and dancing firework display jpegs.  Where's the party likely to be?

In the meantime - congratulations.

-Lee

Title: Re: no longer chronic
Post by 1MajorPain on May 11th, 2005, 10:20am
Heres hoping this thread never dies! Congrats to both you and D.

Major

Title: Re: no longer chronic
Post by miapet on May 11th, 2005, 10:37am
Nani, Lee, and Major .. .thank you so much!  Major, I hope it never ends too!!!  Lee, gosh, I haven't even planned anything .. .there has been so much hectic life stuff going on .. ..but, maybe, just the 2 of us, can go to dinner???   I could even let him order 'bad' food *g* the stuff I discourage him from eating *L*  What do you think????  I for sure need to do something REALLY NICE for him *smiles*
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by E-Double on May 11th, 2005, 11:11am
Wednesdays RULE!!! ;)

Title: Re: no longer chronic
Post by LeeS on May 11th, 2005, 11:33am

on 05/11/05 at 10:37:01, miapet wrote:
Lee, gosh, I haven't even planned anything .. .there has been so much hectic life stuff going on .. ..but, maybe, just the 2 of us, can go to dinner???

Skullcap on toast perhaps? ;) ;;D

-Lee

Title: Re: no longer chronic
Post by miapet on May 11th, 2005, 1:07pm
Lee .. .i looooooooovvvvvvvvvveeeeeeee how you think!! hehe, skullcap on toast sounds PERFECT!
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by jokrs2 on May 11th, 2005, 1:42pm
Dancin....Oh I look forward to wednesdays!!! ;;D ;;D
Keep on going Mia & D. You both deserve the blessing.
The healing is at hand. Blessings, Joe

Title: Re: no longer chronic
Post by Tiannia on May 11th, 2005, 7:34pm
So where is the party Mia???? You got a hell of an anniversary to celebrate....

I am sooo happy for you.

I have gone 5 days without any trex. That is a new record for me.  Could not imaging 50 days let alone 50 weeks. But it gives me something to hope for.

Love and Light,
-Tia

Title: Re: no longer chronic
Post by miapet on May 12th, 2005, 10:48am
woo hoo Tia!!!! 5 days w/out trex is GREAT!!  Hopefully they are just the beginning  . . ..
You are always in my circle ..

*positive light and energy*
mia

Title: Re: no longer chronic
Post by Renee on May 12th, 2005, 2:04pm
[smiley=thumbsup.gif]

TEA totally awesome!   ;)

Congrats!

Title: Re: no longer chronic
Post by lionsound on May 12th, 2005, 4:56pm
YAY, D & Mia!


YAY Tia!

Title: Re: no longer chronic
Post by miapet on May 15th, 2005, 9:22pm
Tia, how ya doin??

So, D doesn't know why i'm making a big deal out of wednesday *L* he hasn't counted. .  .says he doesn't do that anymore . . . .so, anyway, we're going out to dinner . . .then home for the skullcap on toast *g* AND woohooooooooooooo Wednesday is almost here!!!!!!!!!!!!!

Title: Re: no longer chronic
Post by Tiannia on May 16th, 2005, 11:44am

on 05/15/05 at 21:22:56, miapet wrote:
Tia, how ya doin??

So, D doesn't know why i'm making a big deal out of wednesday *L* he hasn't counted. .  .says he doesn't do that anymore . . . .so, anyway, we're going out to dinner . . .then home for the skullcap on toast *g* AND woohooooooooooooo Wednesday is almost here!!!!!!!!!!!!!


Wed is as much of a victory for you as it is for him. CH was such a big part of your life together.  I am sooo happy for you both. [smiley=hug.gif]


Me, (shrug) well.  I'm ok.  Had to take a shot thrusday. Got slammed while in my weekly meeting with the president of the company.  Excused myself and took the shot.  Only had one persn ask me if I got something in my eye cause if was swollen and watering.  And the gal next to me ask me if I wanted them to turn up the ac cause I was sweating.  Guess it is better then me screaming like a mad woman.  Took a shot Saturday, but have not had one since.  So I take each day as it comes.  Better then many shots a day and feeling like the beast lives on my back.   :-/

Been reading up on LSA.  Still a bit worried about it.  My works drug tests are pretty tough and cant afford to have something show up.  Hell even my prescriptions for my back showed up on the drug test when they hired and and I had to show them the script bottles.  

Love and light
-Tia

Title: Re: no longer chronic
Post by miapet on May 16th, 2005, 1:10pm
Tia,  sorry you got hit . .but glad you aren't getting hit as often as you were!
Pain meds show up as opiods . . .the common tests are for marijuana, amphetimines, opiods, and cocaine . . .psilocybin isn't commonly tested for (mostly only if you have a p.o. monitoring you and the courts knew that was your drug of choice?) .. .I have never heard of LSA being routinely checked for. ..again, maybe if you are being monitored? .. .
I worked in a field where we did initial drug testing and then random drug tests  . . .and hon, they weren't random, I knew who did (or used to do) what . . .and if it looked like they were slipping, they were 'randomly' selected.
Anyway, just some food for thought *g*  
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by Tiannia on May 16th, 2005, 1:19pm
That is good to know.  Just dont want to take any kind of chance.  Never "used" anything that was not from a doc and well....  just not want something like that to screw up my life.

And you are right my pain pills are codene.  So that is why they showed up , just never had a work ask me about htat before.  

Title: Re: no longer chronic
Post by Renee on May 18th, 2005, 7:46am
ANTICIPATION.....


[smiley=me&mb.gif]

Title: Re: no longer chronic
Post by nani on May 18th, 2005, 8:33am
Holding back from posting my fireworks smilies... :)

Title: Re: no longer chronic
Post by miapet on May 18th, 2005, 9:15am
*g* thanks Renee and Nani . . .

Okay, it's official!!!!!!!!!!!!!!!!!11[/size][size=25]52 WEEKS . . .that's ONE YEAR Pain Free!!!!!  

I can NEVER thank everyone enough for the help, the continued support, and  . . .for everything!!  Over a year ago, I would haver never guessed that a:  there were so many people suffering with this thing . . .nor that they would be so helpful in helping us find peace and p/f time . . .total strangers msging with words of support . . . .phone numbers to be able to talk to someone who understands . . . for everything . . .

Wishing you all an eternity of p/f days and nights.  . .no matter what method of battle you are using.

*positive light and energy*
miapet
ps . . .Lee, the party already started *L* and I never even got to the skullcap!! hehe

Title: Re: no longer chronic
Post by nani on May 18th, 2005, 9:22am
http://bestsmileys.com/fireworks/3.gif http://bestsmileys.com/fireworks/1.gif

http://bestsmileys.com/fireworks/7.gif http://bestsmileys.com/fireworks/5.gif

http://bestsmileys.com/fireworks/9.gif

ONE YEAR!!!!!! HOORAY!!!

Title: Re: no longer chronic
Post by LeeS on May 18th, 2005, 9:39am

on 05/18/05 at 09:15:40, miapet wrote:
ps . . .Lee, the party already started *L* and I never even got to the skullcap!! hehe

Love it! ;;D

Here's to the next 52 weeks 8)

-Lee

Title: Re: no longer chronic
Post by Chillrmn1 on May 18th, 2005, 9:56am
HAPPY, HAPPY ANNIVERSARY!!!!!!!!!!!!!!!

Man, the fireworks show is great too, what a party!!!

Glad and happy for you both, and may it continue -
Bob

Title: Re: no longer chronic
Post by Langa on May 18th, 2005, 10:44am
WOOOO-HOOOOOO!!

AWESOME NEWS!!!  A WHOLE YEAR!!  CONGRATULATIONS!!!

NANI, AWESOME FIREWORKS DISPLAY, NOW WE JUST NEED SOME MUSIC AND WE CAN GET TO DANCING....!!!

;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D ;;D

Langa

Title: Re: no longer chronic
Post by Flounder on May 18th, 2005, 10:53am
FUKENEH!!!!!!!

Wow, its already been a year.

Here's to many more! [smiley=me&mb.gif]

Title: Re: no longer chronic
Post by E-Double on May 18th, 2005, 10:57am
FANTASTIC!!!!

tears of joy and tons of smiles for ya both!!!!

ENJOY! :)

Eric

Title: Re: no longer chronic
Post by LeLimey on May 18th, 2005, 11:07am
FAN-FLIPPIN-TASTIC!!!!!

Wonderful wonderful news!
Thanks for sharing!
Helen

Title: Re: no longer chronic
Post by lionsound on May 18th, 2005, 1:12pm
Yes!!!Mia and D!!!!

thrilled for you both!!!!!!

hugs and happiness for you!!!
Rori

Title: Re: no longer chronic
Post by sandie99 on May 18th, 2005, 1:44pm
ONE YEAR??? WOW!!!

CONGRATS!!!!

http://members.iinet.net.au/~vroncol/Smiley_gifs/Smileys2/firework2.gif


Title: Re: no longer chronic
Post by Sophie on May 18th, 2005, 3:33pm
Mia,
You don't need the skullcap -------- but maybe "D" could come up with a little spanking to celebrate.  :-X Happy days!
And many thanks for sharing and shedding light for the rest of us.
Who would have thought the answer could be as simple as a natural gift from the creator.
Don't get too worn out celebrating---we still need your bright light to lead the way.  Sophie//aka stellablue  :) ;) ;;D

Title: Re: no longer chronic
Post by broomhilda on May 18th, 2005, 4:50pm
THATS AWESOME!!!! Congrats to you both, may it last forever!!!


Hugs and smiles to you both, celebrate together!

Title: Re: no longer chronic
Post by SteCo on May 18th, 2005, 5:57pm
Simply incredible.....the fireworks and all.....
OH YEAH......CONGRATS on the 1 year mark too  ;;D...
This is just too cool!!

May it continue for a looonnngggg time!
SteCo

Title: Re: no longer chronic
Post by Renee on May 18th, 2005, 7:05pm
52 WEEKS!!!

ONE FREAKIN' YEAR!!!


CONGRATULATIONS D & KIM


[smiley=hug.gif]                      [smiley=smokin.gif]

[smiley=me&mb.gif]                [smiley=beer.gif]

[smiley=moonwiggle.gif]         [smiley=thumbsup.gif]      
 
[smiley=sayyes.gif]                  [smiley=winkkiss.gif]

Title: Re: no longer chronic
Post by miapet on May 19th, 2005, 8:59am
thank you all!  each of you hold a special place in our hearts, and we feel honored to call you friends *smiles*

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by Margi on May 19th, 2005, 9:40am
Mia, that's just the best news I've heard all year!!  Here's hoping that you can post the same thing, this time NEXT year, too!!  Thank you so much for being such a great supporter, too - I'm sure that your cheering him on and being relentless in your research for him has contributed greatly to the success you're seeing now.  

Enjoy that blessed remission you two!  :)

Title: Re: no longer chronic
Post by Tiannia on May 19th, 2005, 11:04am
I am so happy for you and D, Mia....

Maybe next year at this time, I might be able to celebrate with you.  

http://members.iinet.net.au/~vroncol/Smiley_gifs/circle.gif

http://members.iinet.net.au/~vroncol/Smiley_gifs/Smileys2/kiss1.gif

Title: Re: no longer chronic
Post by jokrs2 on May 19th, 2005, 3:19pm
Alright!!! Way to go Mia & D. What a blessing. May it continue forever. Going on my 7th week pain free and because of you guys I know that it's just the beginning. God bless, Joe

Title: Re: no longer chronic
Post by pinksharkmark on May 21st, 2005, 4:57pm
Awesome. Completely awesome.

From two decades of chronic clusterhead to a whole year pain free. All due to a humble mushroom. Boggles the mind, doesn't it?

Mia, would it be possible for you to summarize in a single post just how many doses of what strength and  at what intervals D required to achieve this milestone? I'm sure the information is scattered throughout the thread but it would be handy to do a recap now.


pinky

Title: Re: no longer chronic
Post by Giovanni on May 21st, 2005, 6:42pm
One year, can you believe?  Absolutely Fantastic :D

John

Title: Re: no longer chronic
Post by miapet on May 23rd, 2005, 11:33am
Yeppers . . .1 year . . .all from the humble mushroom . . and yeppers . . .it boggles our (D and mine) minds!

I will be happy to recap the dosing scedule for y'all.  This is off the top of my head, but I will double check it at home . . .if I need to make corrections, I will!

Last year, April 2004, D dosed with 1.5 grams (dry) mixed into chocolate.  2 weeks later, when his h/as started ramping up again (still April 2004) he dosed again with 1.5 grams (dry)  mixed in chocolate.

He next dosed in June 2004 with .75 grams (dry) mixed in chocolate.

August 2004 he again dosed with .75 grams (dry), due to the fall being, historically, a very high activity time.

maybe a dose in here?  gotta check

December 2004 he again dosed with .75 grams (dry)

Either February or March (I'll check this one for sure *g*) we dosed again . . .I didn't have a decent scale . . .not sure of the exact dose, just that it was more than what he was used to . . or maybe just stronger? anyway, he wasn't really excited with this one  . . .

Currently, we are in a holding pattern until there are signs of REAL activity . . .unless D changes his mind and decides to get back on a schedule . . .

I would also like to say, for the record, that D does not like to dose.  He in no way wants to take larger size doses or to have a 'recreational' time out of dosing.  He always has some anxiety about dosing.  There is no way he will ever use psilocybin for anything other than his battle with the beast.   We have discussed trying LSA or Philosopher's Stones, but have went with the philosophy of, "If it ain't broke, don't fix it." and the mushrooms 'ain't broke' . . .

I am pretty accurate on the dates of his doses . . .but I will double check at home.

*positive light & energy* and *MUCH LOVE* to everyone who helped us & those who supported us . . .while this isn't an easy decision to make for many, its (we believe) the right one . . .

Wishing everyone p/f days and nights
D & mia

Title: Re: no longer chronic
Post by Flash on May 23rd, 2005, 11:41am
What level and nature of dosing side effects does he experience from 0.75g dry?

Title: Re: no longer chronic
Post by miapet on May 23rd, 2005, 4:51pm
I guess I should have been more clear about why I put that last little bit in there.  Since there has been some discussion about people becoming addicted and/or using for recreational purposes, I wanted to let the board know where D stood with it.  He only uses psilocybin to battle the beast, and he will continue to do so until the day we die.  
Now, add in the fact that D is not (and was not) a recreational drug user, and to get him to take ANYTHING has taken a near act of congress . ..
Now . .for the answer to your question Flash *g*
D experiences minimal effects from dosing.   A bigger sense of awareness . . .things are funnier . . .colors more vivid . . .I think the anxiety of dosing has just as much effect as the actual dose (although, skullcap has worked well, and the fact that he now knows what to expect . . although, it didn't help when I whacked him with a larger dose!) . . .He doesn't give off the 'classic' version of a person on any type of drug . . .he just thinks he does . . .if that makes sense?  Personally, we (me and the fam) think he is quite a riot to be around on .75g .. . he laughs a lot is a little silly about some things . .  . . kind of like being in awe or something?  
*positive light and energy*
miapet

Title: Re: no longer chronic
Post by Chillrmn1 on May 23rd, 2005, 6:29pm
Hi Mia,

This may all work out well for "D" and he may never experience another visit from the Beast, and I hope it works out that way. How else would he know if he wasn't one of the lucky ones to have "outgrown" this or if the psilocybin ended it for good? Has been talk of that. And if the Beast comes back, you know what will work to back it down again.

I've thoroughly enjoyed this thread and want you to know it's helped me to make certain decisions to beat  down the Beast myself.

Wishing both you and "D" the best and positive light and energy to ya both!!!!!!!!! :-)

Edited to clean up some typos.

Bob

Title: Re: no longer chronic
Post by miapet on May 25th, 2005, 9:11am
well, we are at 53 weeks . . .

Title: Re: no longer chronic
Post by E-Double on May 25th, 2005, 9:16am
Unreal!!! ;;D

So happy for you both!

Ex2

Title: Re: no longer chronic
Post by LeeS on May 25th, 2005, 12:59pm
Just checked my clock and it's Wednesday!

53 PF weeks!  *YAY*

-Lee

Title: Re: no longer chronic
Post by jokrs2 on May 27th, 2005, 8:06pm
I almost forgot to visit my favorite wednesday post ;).
Way to go Mia & D. You're the BEST!!
God bless you, Joe

Title: Re: no longer chronic
Post by BobG on May 31st, 2005, 11:43pm
Just bumpin' it to the top to start the 54th week.

Title: Re: no longer chronic
Post by nani on May 31st, 2005, 11:50pm
Ooops, I missed 53 weeks... :-[  
I guess it was kind of anti-climactic...I'll make up for it tomorrow.  :D

Title: Re: no longer chronic
Post by E-Double on Jun 1st, 2005, 10:57am
HAPPY WEDNESDAY

Title: Re: no longer chronic
Post by Chuffy on Jun 4th, 2005, 1:00pm
I have dared to mention this thread on the UK OUCH site
see http://www.ouchuk.org/cgi-bin/yabb/YaBB.cgi?board=02;action=display;num=1117708967;start=0#2

The Shrooms have fixed CH for me and the people need to know, lets see how long it is before they delete my post.

Freedom of Speech my arse!

Title: Re: no longer chronic
Post by miapet on Jun 6th, 2005, 11:28am
Thank you all for taking care of week 54 for us!!  We were on vacation and I didn't even look at a computer!!  

Update . . .still p/f . . . .*YAY* well, not totally p/f . . .the beast hasn't returned, but we are a bit burnt . . .toooooooooooooo much sun . . . .I think I glow *L*

Chuffy . . . you're a brave soul *smiles* glad it's working for you . . .and that you are attempting to help others!

*positive light and energy*
miapet

Title: Re: no longer chronic
Post by vig on Jun 6th, 2005, 1:30pm

on 06/04/05 at 13:00:10, Chuffy wrote:
I have dared to mention this thread on the UK OUCH site
see http://www.ouchuk.org/cgi-bin/yabb/YaBB.cgi?board=02;action=display;num=1117708967;start=0#2

The Shrooms have fixed CH for me and the people need to know, lets see how long it is before they delete my post.

Freedom of Speech my arse!

I can't even get in to look.
what are they protecting?

Title: Re: no longer chronic
Post by broomhilda on Jun 6th, 2005, 2:11pm
Is it Wednesday yet? ;;D Glad you had a wonderful holiday, welcome back and whoo hoooo 54 weeks, pure bliss!

Title: Re: no longer chronic
Post by Jonny on Jun 6th, 2005, 5:40pm

on 06/06/05 at 13:30:02, vig wrote:
I can't even get in to look.
what are they protecting?


Bro, you cant even post a link from this board to theirs....I tried with the 02 poll....No go  ::)

Title: Re: no longer chronic
Post by jokrs2 on Jun 7th, 2005, 3:11am
Mia & D keep on rockin! ;;D
I know you had a pain free vacation......Blessings and congrats, Joe

Title: Re: no longer chronic
Post by LeeS on Jun 7th, 2005, 10:12am
Thought the jinx monster had been messing with my clock! ;) ;;D

Glad you had a good holiday, and as ever, congrats :)

-Lee

Title: Re: no longer chronic
Post by Pinkfloyd on Jun 7th, 2005, 10:37am

on 06/06/05 at 11:28:41, miapet wrote:
Thank you all for taking care of week 54 for us!!  We were on vacation and I didn't even look at a computer!!  

miapet


What's up with this vacation thing every year now? Sorry if this treatment plan has hidden costs involved every year with all these vacations. Guess it's another side effect we'll have to list somewhere.

;;D
Bobw

Title: Re: no longer chronic
Post by lionsound on Jun 8th, 2005, 3:03pm
Isn't today WEDNESDAY?!!!!

what week is this?

55 yahoo!!!!!!


yay Mia and D! Glad you enjoyed your vacation!

Title: Re: no longer chronic
Post by E-Double on Jun 8th, 2005, 5:06pm
Happy Wednesday Kim & D!!!!!!!

Title: Re: no longer chronic
Post by Flounder on Jun 11th, 2005, 12:42am
D is still h/a free. ;;D 55 weeks and counting.

Miapet asked that this thread be updated and continue on.

We will keep the thread going until you can return.

((((((((Mia and D)))))))))

Title: Re: no longer chronic
Post by LeeS on Jun 11th, 2005, 4:25am
Enjoy the well-deserved rest both of you 8)

Congrats. :)

-Lee

Title: Re: no longer chronic
Post by Chillrmn1 on Jun 11th, 2005, 10:42am
Great to hear D's stiill doing well. Enjoy the time off!

Bob

Title: Re: no longer chronic
Post by IndianaJohn on Jun 11th, 2005, 4:22pm
If I may, I would like to add perhaps another little sucess story...

After getting my butt kicked repeatedly last year, I finally tried the clusterbester treatment.  Unfortunately, my cycle ended before I could start the "treatment".  However, I did it anyway, which was fun.   Now it's mid June and I have missed my May cycle almost completely.  I had two mild hits that didn't need any trex to deal with.  I am hopeful that maybe, just maybe, I may have found a way to keep the beast at bay.  For now, I am just going to wait and see what happens, but will start another crop in August as I would be due for another cycle in the September/October time frame and want to be prepared.

I realize all of the ramifications of the treatment, but having held a gun to my head over this, I think that the consequences are more than worth it......

My  [smiley=twocents.gif] anyway.

PF wishes to all.

Indiana


Title: Re: no longer chronic
Post by Chillrmn1 on Jun 11th, 2005, 5:34pm
Hey Indiana,

Good for you. "Unfortunately", probably not, you're probably experiencing the "Maintenace Dosing" benefits and extending or prolonging your remission time.

Keep us updated, let us know.
Beats the hell out of the gun treatment method.
Bob

Title: Re: no longer chronic
Post by BobG on Jun 15th, 2005, 2:40am
Wednesday............time to bump back to the top.

56 weeks now?

;;D

Title: Re: no longer chronic
Post by nani on Jun 15th, 2005, 4:36am

on 06/15/05 at 02:40:48, BobG wrote:
Wednesday............time to bump back to the top.

56 weeks now?

;;D



http://bestsmileys.com/fireworks/7.gif


http://bestsmileys.com/clapping/4.gif

Title: Re: no longer chronic
Post by Chillrmn1 on Jun 15th, 2005, 5:55am
Yeah, I think the numbers add up to 56 weeks! What a great success story for a former chronic!

Keep it going Mia & D!

Bob

Title: Re: no longer chronic
Post by E-Double on Jun 15th, 2005, 11:36am
;;D http://bestsmileys.com/clapping/4.gif

Title: Re: no longer chronic
Post by Margi on Jun 15th, 2005, 12:27pm
Happy Wednesday, you two!!  Keep on rockin!!

Celebrating your success!  :)
Margi

Title: Re: no longer chronic
Post by LeeS on Jun 15th, 2005, 12:41pm
Wednesday, IMHO, is the best day of the week 8)

Half way through the (normal) working week; just about recovered from the previous weekend; building up for the next weekend; and, of course, this thread ;;D

Congrats as ever :-*

-Lee

Title: Re: no longer chronic
Post by Tiannia on Jun 15th, 2005, 7:42pm
Yep this thread definatly cheers up my week.  It is great. and enjoy.

Title: Re: no longer chronic
Post by vig on Jun 15th, 2005, 9:54pm
Wednesday is hump day!

Title: Re: no longer chronic
Post by jokrs2 on Jun 16th, 2005, 2:56pm
OK so I'm a day late saying congrats. Way to go Mia & D. Keep it going.. ;;DBlessings, Joe

Title: Re: no longer chronic
Post by BobG on Jun 22nd, 2005, 10:52am
57  :D

Title: Re: no longer chronic
Post by nani on Jun 22nd, 2005, 10:54am
http://bestsmileys.com/happy/7.gif

Title: Re: no longer chronic
Post by E-Double on Jun 22nd, 2005, 11:29am
[smiley=sayyes.gif]

Title: Re: no longer chronic
Post by rextangle on Jun 22nd, 2005, 11:47am
[smiley=headbanger.gif] [smiley=sayyes.gif]

Title: Re: no longer chronic
Post by LeeS on Jun 22nd, 2005, 11:52am
Well done you two - you too Rex 8)

-Lee

Title: Re: no longer chronic
Post by lionsound on Jun 22nd, 2005, 3:21pm
YAY!!!!!  :D

Title: Re: no longer chronic
Post by BobG on Jun 29th, 2005, 7:59pm
58  :)

Title: Re: no longer chronic
Post by sandie99 on Aug 1st, 2005, 2:40am
I hope that D stays PF forever! :)
I know I'll keep my thumbs up!

I've been PF since April and seeing this thread inspires me! :)

Best wishes & lots of more PF weeks,
Sanna :)

Title: Re: no longer chronic
Post by Jasmyn on Aug 1st, 2005, 12:44pm
Great news and wonderful inspiration!
Wishing you only PF months and years to come!
[smiley=wow.gif] [smiley=thumb.gif]

Title: Re: no longer chronic
Post by BobG on Aug 5th, 2005, 12:35am
Is it 62 or 63 now? Whatever, it's still going to the top.

Title: Re: no longer chronic
Post by LeLimey on Aug 5th, 2005, 5:13am

on 08/05/05 at 00:35:56, BobG wrote:
Is it 62 or 63 now? Whatever, it's still going to the top.


Its flippin' brilliant, thats what it is Bob! ;;D

Title: Re: no longer chronic
Post by sandie99 on Aug 6th, 2005, 12:21pm

on 08/05/05 at 05:13:13, LeLimey wrote:
Its flippin' brilliant, thats what it is Bob! ;;D

Ditto! :D

Title: Re: no longer chronic
Post by Charlie on Aug 6th, 2005, 5:35pm
Not at all shabby

http://forums.offtopic.com/images/smilies/hsdance.gif?SSImageQuality=Full

Charlie

Title: Re: no longer chronic
Post by docblondie on Aug 9th, 2005, 10:09am
Can you please tell us what you did exactly that worked?
ckarper@netzero.com

Title: Re: no longer chronic
Post by SteCo on Aug 9th, 2005, 10:24am
Hi Docblondie,
It's all right here.....
www.clusterbusters.com
Look on the first few pages of this thread for further details on this particular case.  
Good luck!
SteCo

Title: Re: no longer chronic
Post by BobG on Aug 17th, 2005, 4:49pm
65?

Title: Re: no longer chronic
Post by miapet on Nov 14th, 2005, 1:10pm
THANK YOU ALL for the warm wishes great energy and support while i was away!!!!!!!!!!!

We had a lot of life stuff going on, family came for MD Anderson, children in and out, etc . . y'all know how it can be . .. and then D also got sick . . .sooooooooooo updating here (or anywhere else) was just more than I could do . . .BUT, I think I can try to now *g*

update:  after too strong of tea, D chose not to dose at the scheduled time . . he hated the 'trippy' effect, and I didn't help it any . . .we made it past the scheduled dose time . . .and then tell-tale ch signs were in our life again . . .and he did NOT want to believe it . . .eventually we had to believe it . .. and we decided to go with seeds.  I believe we dose twice, once with HBWR, and once with RC . . .

We still fully support the alternative treatments, and will never go back to 'traditional' methods of treatment.  We do not believe seeds to be superior, they just fit our needs better.

We believe seeds work at least as well, and have mightily tested them with stress, medications, and hospitalizations . .and D is still h/a free.  We should be considering dosing in the very near future, but due to other medical situations, we may need to push it out a little.

*positive light and energy*
D & kim

Title: Re: no longer chronic
Post by LeeS on Nov 15th, 2005, 4:02am
Wow ... thought I was caught in a time-warp ;)

Great to have you back Kim and all the best to D :)

-Lee

Title: Re: no longer chronic
Post by miapet on Nov 28th, 2005, 10:48am
hehe thanks Lee . . it's good to be back!

Hope everyone had a great holiday . . .

D is still h/a free *SMILES*

*positive light and energy*
D & miapet



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