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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> What I'm trying now
        
(Message started by: nani on Jul 22^nd, 2005, 11:21pm)

Title: What I'm trying now
Post by nani on Jul 22^nd, 2005, 11:21pm

After my disastrous fall from the kudzu vine, I decided to try the "other" alternative. ;)
After a short kudzu detox, I dosed on Wed morning. I took a very small dose and had no effect other than colors looking brighter. As I expected, (but damn...I still wasn't ready!) I got hit pretty hard twice on Wednesday before 8 PM. My normal increase in activity time has started at about 9 PM lately, and at 9 PM Wed, I noticed that my head felt "clear" or "empty" if you will. (Please refrain from posting specifically to that remark.) ;) No pain or activity for the rest of the night.
Thursday I shadowed quite a bit during the day, but I noted that the "clear" feeling was back at 8 PM. No hits.
Today the shadows ended at 4 PM. :)
At the moment, I'm feeling pretty optimistic. :D I am prepared to dose again on Monday, if needed.

I'm not ashamed to say that I was a little nervous about this. But, having had a visit to PF land, I want an extended vacation there. Many thanks to Pinkfloyd and the rest of you who coached me through this. You know who you are... :-*

I want to keep you posted because I'm a hard to treat chronic. Eventually all meds quit working for me, and my abortive choices are now limited to O2, ice and Red Bull. I'll let you know. PF wishes, nani

Title: Re: What I'm trying now
Post by E-Double on Jul 22^nd, 2005, 11:46pm

Good luck my love!!!

Stay strong as ever and you will rejoin those PF ranks again.

Hugs to ya,

E

Title: Re: What I'm trying now
Post by burnt-toast on Jul 23^rd, 2005, 12:19am

Good luck - Let us know how it goes.

Tom

Title: Re: What I'm trying now
Post by unsolved1 on Jul 23^rd, 2005, 12:23am

Good Luck Nani !!

Best Wishes

Unsolved

Title: Re: What I'm trying now
Post by Kevin_M on Jul 23^rd, 2005, 12:28am

on 07/22/05 at 23:21:53, nani wrote:

At the moment, I'm feeling pretty optimistic. :D

:)

Kevin M

Title: Re: What I'm trying now
Post by Topical on Jul 23^rd, 2005, 8:50am

All our fingers are crossed for you Nani. Tame the beast!

Title: Re: What I'm trying now
Post by nani on Jul 23^rd, 2005, 10:57am

Thanks all. Well, I've been up for about 3 hours now...
no shadows... heeheehee

Title: Re: What I'm trying now
Post by pattik on Jul 23^rd, 2005, 11:07am

You are giving us much inspiration, Nani...my thoughts are with you. Hope this time will be the exception to the rule regarding treatments failing eventully. [smiley=hug.gif]

Title: Re: What I'm trying now
Post by cjc68 on Jul 23^rd, 2005, 3:34pm

Good luck Sweetie! My best wishes and prayers are with you!

ps. I know of a place in Ruidoso (Ruidoso Downs) where that alternative grows wild and there is plenty there free for the taking.....

Title: Re: What I'm trying now
Post by sandie99 on Jul 23^rd, 2005, 3:37pm

My thumbs are up for you... :)

PF wishes,
Sanna :)

Title: Re: What I'm trying now
Post by nani on Jul 23^rd, 2005, 3:41pm

on 07/23/05 at 15:34:56, cjc68 wrote:

ps. I know of a place in Ruidoso (Ruidoso Downs) where that alternative grows wild and there is plenty there free for the taking.....

Kewl! It's a great place to spend a weekend, too. They've just re-opened the Inn of The Mountain Gods and I hear it's gorgeous. Thanks for the tip. ;)

Title: Re: What I'm trying now
Post by godsjoy777 on Jul 23^rd, 2005, 3:57pm

Yeah.....yipppppeeeeee!!!!! Hey Na....na......na...na.....the Pain free's back!!!!!
(sung to the tune "My Boyfriend's Back"). Soooo happy for you and please keep us.....ahem....POSTED... [smiley=laugh.gif] to the continued success......I will be trying this treatment the next cycle I believe if it seems to be the workeble solution....

You rock, Nani...Sooooooo glad to get to know you at the Dallas Convention....I had told my husband I have to meet Nani if I don't meet anybody else.....I just knew you were great!

Pain free Days and nights!!!!

Blessings,
Karen

Title: Re: What I'm trying now
Post by stomper on Jul 23^rd, 2005, 4:08pm

yyyyyyooooooouuuuuu gggggggggooooooooo gggggggiiiiiirrrrrllllllssssss love readin up on the nanster!! allthebest2you!! jimm

Title: Re: What I'm trying now
Post by lionsound on Jul 23^rd, 2005, 8:50pm

Good luck , nani! [smiley=hug.gif]

pf's for you!

Title: Re: What I'm trying now
Post by nani on Jul 24^th, 2005, 12:07am

Thanks so much everyone. I love you all!!
I only shadowed between noon and 2:30 today. ;;D

Title: Re: What I'm trying now
Post by cjc68 on Jul 24^th, 2005, 12:29am

I think we will both have a good night sweetie! I am happy you had a good day!
ps. I added a new entry on my post. (the zu and pred)

Title: Re: What I'm trying now
Post by eddie on Jul 24^th, 2005, 11:57am

good luck nani
i really was tired of taking a lunchbox full of meds
to work and not food. im not totally pain free but alot
better. i wish you all the luck
eddie

Title: Re: What I'm trying now
Post by Chillrmn1 on Jul 24^th, 2005, 1:09pm

Hi Nani,

So glad you're seeing some pain free relief and hope it continues for you! Please don't be discouraged at first, may take a few times for the healing to take foot. In my case, HBWR seemed to get me my remission after the the first alternative tries. As long as you're seeing progress or relief seems it's heading in the right direction for you. Glad to see you're giving it a try......................was the best choice for ME since all these 28 years of the beast, torment, and misery..............only wish I'd have made the desicion to try this route sooner. Sincerely wishing you the same results as I experienced.

Wishing you pain free time and success..............of all people, you deserve it! You're a special person, always helpful, supportive, and wise to all.

Sincerely,
Bob

Title: Re: What I'm trying now
Post by Rock_Lobster on Jul 24^th, 2005, 1:24pm

Nice to hear that it seems to be working, Nani. Keeping my digits crossed.

Title: Re: What I'm trying now
Post by Kris_in_SJ on Jul 24^th, 2005, 8:40pm

Go Nani!

PinkFloyd may well be the best friend of many around here. As I await my next, inevitable cycle, I'm reading, reading, reading about alternatives.

My best to you, sweetie. Keep us informed.

Kris

Title: Re: What I'm trying now
Post by nani on Jul 24^th, 2005, 10:45pm

15 minutes (total) in shadows today. ;;D

Title: Re: What I'm trying now
Post by slacker032 on Jul 24^th, 2005, 11:24pm

For how long did you detox off of the Kudzu? Did you taper or stop completely?

Title: Re: What I'm trying now
Post by nani on Jul 25^th, 2005, 10:05am

I tapered off the 'zu, because I'm a wimp. I was down to 1 a day for 2 days and dosed 24 hrs after my last 'zu. I knew that I was cutting it close and risked having this treatment fail, but it worked out pretty well after all. :)

Title: Re: What I'm trying now
Post by seasonalboomer on Jul 25^th, 2005, 10:16am

you go girl. hope that things continue to keep you in the drivers seat.

scott

(using Zu again for for my new cycle - -- let you know it goes.)

Title: Re: What I'm trying now
Post by nani on Jul 25^th, 2005, 10:20am

on 07/25/05 at 10:16:50, seasonalboomer wrote:

(using Zu again for for my new cycle - -- let you know it goes.)

Thanks, scott...Be assured I'm still watching kudzu very closely. I intend to hold on the my position as cheerleader emeritus for the;
Gimme a K! Gimme a U! Gimme a D! ....
well, you know. :)

Edited to add: Things are going very well, and I've decided not to dose again today. I'll wait until I "need" to again. I don't want to be a thread hog, so I'll only update when things change. Please PM me for any updates, if you'd like.

Hugs and PF wishes to all, nani :-*

Title: Re: What I'm trying now
Post by Sandy_C on Jul 25^th, 2005, 4:18pm

Go ahead Nani! Be a thread hog!. We love you and are so glad that this seems to be helping you. Keep us posted. Good luck! :)

Title: Re: What I'm trying now
Post by BobG on Jul 25^th, 2005, 6:09pm

Thread hog my ass!
Post how you're doing or I'll send someone to ...........

Never mind.

Hope this thread continues for 50 more pages of good news.
;)

Title: Re: What I'm trying now
Post by cjc68 on Jul 26^th, 2005, 2:11am

Good for you Nana! Happy to hear it is working for you!
PFDN to you!
Chris

Title: Re: What I'm trying now
Post by LeLimey on Jul 26^th, 2005, 10:46am

on 07/25/05 at 18:09:43, BobG wrote:

Thread hog my ass....

Interesting.. was this invented in Vegas too Bob?! :P
Seriously Nani.. you can't be a thread hog when giving info people desperately want to hear. Its only by people sharing experiences that we all learn so update, update, UPDATE!!!

Title: Re: What I'm trying now
Post by nani on Jul 26^th, 2005, 10:58am

Well, OK...
if yer gonna twist my arm...LOL

Well, yesterday was not as good as the 4 previous days. I actually got a k-5 hit around noon, but it only lasted 8 minutes. I chose not to try and abort it, because I wanted to see how long it would last. I shadowed a little more, too and noticed that my head wasn't feeling as clear as before. I will see how it goes today, and will dose tonight if needed. I will use a slightly larger dose of the same treatment.
I will say that 4 virtually PF days from one dose of "medicine" is a huge improvement for me. I am very optimistic that the doses will get further apart, and that at some point, I'll just be maintenance dosing.
hugs and pf wishes to all, nani

Title: Re: What I'm trying now
Post by BobG on Jul 26^th, 2005, 2:38pm

on 07/26/05 at 10:46:06, LeLimey wrote:

Interesting.. was this invented in Vegas too Bob?! :P

Not really. Many decades ago a guy named Bob Hope (you might remember him as Leslie) moved here from England and brought it with him. Caught on pretty good too. [smiley=bag.gif]

Back to nani's topic.

Title: Re: What I'm trying now
Post by nani on Jul 27^th, 2005, 12:55am

Well, I dosed again tonight. I used a slightly larger dose and still didn't really feel different. I had mild shadows throughout (switching sides now and then) No real hits (yet) but had occasional "stabbing" pains in my skull and eyes (also switched sides now and then). I did notice that the stereo TV sounded like I was in the audience of The Daily Show.
I'll keep ya posted. :)

Title: Re: What I'm trying now
Post by TxBasslady on Jul 27^th, 2005, 3:08am

Nani,

Good luck!! The shrooms will be my next choice, if the Kudzu quits working.

I did wake this a.m. with a K-6. First hit I've had in many weeks. Lasted about 30 minutes....hoping it was because I didn't take the zu at the right times yesterday...and am a bit deprived of sleep.

Keep us posted.

Jean

Title: Re: What I'm trying now
Post by Sandy_C on Jul 27^th, 2005, 8:40am

Nani - you go girl! Hang in there - hope it works great for you. [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif]

Title: Re: What I'm trying now
Post by rextangle on Jul 27^th, 2005, 12:39pm

Nani,

I hope this works for you, you deserve it!

Cheers

Rex :)

Title: Re: What I'm trying now
Post by nani on Jul 27^th, 2005, 11:03pm

Thanks all!! Well, I didn't have ANY shadows today, but did get hit twice. Both were about a k4. The first one lasted all of about one minute, the second about 3 minutes. :) Both happened out in public, so I was grateful for their very short duration. My head has been rather "empty" otherwise. ;)
I'll keep you all posted. hugs, nani

Title: Re: What I'm trying now
Post by Sandy_C on Jul 28^th, 2005, 3:20pm

Empty? Empty? No, don't think so. Probably just a little bit more en "lightened", could we say. ;;D Hang in there - we're all rooting for you. [smiley=hug.gif]

Title: Re: What I'm trying now
Post by nani on Jul 29^th, 2005, 12:22am

Some easy shadows today. A five minute k4 hit. :)
Pluggin' away...
hugs, nani

Title: Re: What I'm trying now
Post by Sandy_C on Jul 30^th, 2005, 10:08am

Keep it up Nani. Good girl!

If this works for you, I'll be in touch when my next cycle starts to get your "recipe".

Hugs

Sandy

Title: Re: What I'm trying now
Post by nani on Jul 30^th, 2005, 10:57am

Thanks Sandy. I definitely recommend this treatment
(although I still can't say I'm in remission - yet)
I'm still experiencing some shadows and had a k7 hit yesterday that lasted about 30 minutes. It may have lasted less time had I not "wimped out" LOL and tried Red Bull. What I found was that since Red Bull tastes nasty to me I can only handle a few swigs at a time. So, I'd take a few sips, the pain would subside...only to come back in about 5 minutes. I repeated that pattern until the Red Bull and the CH were gone. In total...about 30 mins. So really, for all I know I just made a 10 minute hit last 30 mins. :-/
During the PF times, my head still feels remarkably clear. At one point last night I told my husband that my head felt like it had never had a HA. Or at least what I imagine that feels like.
I'm keeping track of the activity, and it should continue to get better. Should my normal activity return I will dose with HBWR seeds. Some have experienced some relief with psilocybin, but had to dose fairly often to maintain it. Once they tried HBWR seeds, it finally provided complete remission. That, of course, is what I'm aiming for.

Many thanks to all of you who have provided kind and encouraging words. They mean a lot to me. :)

hugs and PF to all, nani

Title: Re: What I'm trying now
Post by Sandy_C on Jul 30^th, 2005, 12:30pm

Red Bull? As in the beer Red Bull? Or is this something entirely different? Please splain, Lucy.

Title: Re: What I'm trying now
Post by nani on Jul 30^th, 2005, 12:53pm

Red Bull is actually one of those "designer" energy drinks, Sandy. (you aren't the only one who thought it was beer, LOL) It contains caffeine and taurine (which Flo says can/may be useful in aborting). It's carbonated (which makes it impossible for me to slam it down) and to me, at least, tastes like artifically citrus flavored vitamins. Yuck. Quite a few people have reported that slamming one down at the first sign of a hit can be effective. So far, I haven't sprouted any wings. ;)
hugs, nani

Title: Re: What I'm trying now
Post by Chillrmn1 on Jul 30^th, 2005, 3:24pm

Hey Nani,

So happy for you you're getting relief and especially about your one comment to your husband "my head felt like it had never had a HA."

May Peace and Pain Free Time Be With You,
Bob

Title: Re: What I'm trying now
Post by LeLimey on Jul 30^th, 2005, 3:35pm

Nani, just a thought but if the carbonation is the reason you can't drink it fast would opening it and leaving it in the fridge help? It would go flat and you might be able to chug it faster. Although it might make it taste even worse!!

Title: Re: What I'm trying now
Post by nani on Jul 30^th, 2005, 4:03pm

Helen, you are bloody brilliant, luv!! I never thought of that. [smiley=ohjez.gif]
It often concerns me that the simplest concepts totally escape me. :-[
Thanks sweetie...I'm going to pop one open right now. :-* hugs, nani

Title: Re: What I'm trying now
Post by broomhilda on Jul 30^th, 2005, 8:58pm

Nani, glad this is working for you, may it continue to bring you pf time and fingers crossed for full time remission ;;D

Title: Re: What I'm trying now
Post by cjc68 on Jul 31^st, 2005, 4:10am

Hello Nani! just to let you know, you can orded a non-carbonated red bull from over seas, comes in a bottle and yes, it is non carbonated! I also saw some on ebay the other day! I almost ordered a case!
Take Care Sweetie!
Chris

Title: Re: What I'm trying now
Post by nani on Jul 31^st, 2005, 7:02pm

100% PF so far today... hehehe ;;D

I felt a 10 second "twinge" earlier... I've decided it was a death throe from the beast. I should be fine this evening and tonight... I am usually completely "clear" by 6 PM.

Title: Re: What I'm trying now
Post by vig on Jul 31^st, 2005, 9:14pm

fan-friggin-tastic!!!

Title: Re: What I'm trying now
Post by JDH on Jul 31^st, 2005, 10:06pm

another satisfied customer? could it be?
congratulations Nani, welcome back to the real world.

Jim

Title: Re: What I'm trying now
Post by Chillrmn1 on Aug 1^st, 2005, 4:41am

Great news Nani!!!! Keep it going!

Bob

Title: Re: What I'm trying now
Post by Sandy_C on Aug 1^st, 2005, 7:37am

on 07/31/05 at 19:02:39, nani wrote:

That's GREAT NEWS! ;;D ;;D ;;D ;;D

Title: Re: What I'm trying now
Post by Pinkfloyd on Aug 1^st, 2005, 11:16am

Hi Nan,
I'll hold off a bit on any congrats for now, simply because its still so early and you'll find this is a two step process. One is ending the cycle of pain. The second is getting to the point that you can actually believe and accept the fact that a cycle has ended without submitting to the beast's time table. When that happens, it falls somewhere between a revelation and an epiphany. We're still working on step one. ;)

Can you tell us if you can notice (and explain) any differences in the pain-free time you are feeling now and the pain-free time when you were having success with Kudzu? IS there any difference? More clear-headed, ect.?? These types of subtle (or not so subtle) physical "feelings" can help determine physiological changes going on with the treatments(s).

:)
Bobw

Title: Re: What I'm trying now
Post by nani on Aug 1^st, 2005, 11:31am

No worries, Bob... I know we're still "in process". Rest assured though...I submit to NO ONE. ;) Even when it's here... I don't submit. It's more like a kicking and screaming thing. I shall NEVER give up this fight.
There is a huge difference between PF on 'zu and PF now. Now, let's see if I can explain it.
Before, even if I was PF, I could feel a "presence"...like something was just sitting there, waiting to pounce. I just always "knew" it was there.
Now... when I'm PF, it really does feel as though my head is "empty". It's almost as if I can imagine what a head that never had a HA feels like.
The most interesting thing for me (and this happened when I first started kudzu), is my new "wimpiness". LOL I've been chronic for 5 years and really feel my pain threshold is pretty high. The slightest shadow really chaps my ass now. I'm guessing this is how "normal" people feel when they get a tension HA. ;) I have little patience for the pain, and it irks me more than ever that I struggle with this bastard. Which, or course, strengthens my resolve to keep fighting.
hugs, nani

Title: Re: What I'm trying now
Post by pattik on Aug 1^st, 2005, 12:00pm

on 08/01/05 at 11:31:37, nani wrote:

The most interesting thing for me (and this happened when I first started kudzu), is my new "wimpiness". LOL I've been chronic for 5 years and really feel my pain threshold is pretty high. The slightest shadow really chaps my ass now. I'm guessing this is how "normal" people feel when they get a tension HA. ;) I have little patience for the pain, and it irks me more than ever that I struggle with this bastard. Which, or course, strengthens my resolve to keep fighting.
hugs, nani

Interesting observation, Nani....you MORE than deserve to have no patience for even a shadow...that's what we all should aim for and achieve. I know that "presence" of which you mention....the lack of it is when I can tell that a cycle is finally over. It's difficult to put into words, but it is very real. Here's to no more "presence"!
;;D

Title: Re: What I'm trying now
Post by Charlie on Aug 1^st, 2005, 1:59pm

Quote:

It's carbonated (which makes it impossible for me to slam it down)

Helen and the others beat me to it. Put the stuff in a glass, grab spoon, move spoon around a lot. Just an idea.

http://www.netsync.net/users/charlies/gifs/shakke.gif

Great news kid. Keep posting great news. http://www.kolobok.wrg.ru/smiles/standart/yahoo.gif?SSImageQuality=Full

Charlie

Title: Re: What I'm trying now
Post by nani on Aug 1^st, 2005, 9:29pm

http://bestsmileys.com/whisper/1.gif

PF day 2

Title: Re: What I'm trying now
Post by JDH on Aug 1^st, 2005, 10:31pm

on 08/01/05 at 21:29:41, nani wrote:

http://bestsmileys.com/whisper/1.gif

PF day 2

I wanna see a 3 on here about this time tomorrow ;)

Jim

Title: Re: What I'm trying now
Post by Chillrmn1 on Aug 2^nd, 2005, 4:38am

DITTO!!!!!!!!!!! Lets see a 3 and higher!

Title: Re: What I'm trying now
Post by Flash on Aug 2^nd, 2005, 5:36am

Fuck that, let's see "1 Year Pain Free" in 363 days time.

Title: Re: What I'm trying now
Post by jcmquix on Aug 2^nd, 2005, 6:12am

on 08/02/05 at 05:36:28, Flash wrote:

Fuck that, let's see "1 Year Pain Free" in 363 days time.

I AGREE 100 % to that [smiley=me&mb.gif]

Title: Re: What I'm trying now
Post by Sandy_C on Aug 2^nd, 2005, 8:07am

on 08/02/05 at 06:12:03, jcmquix wrote:

I AGREE 100 % to that [smiley=me&mb.gif]

I second, third, and fourth that motion! [smiley=sayyes.gif]

Title: Re: What I'm trying now
Post by vig on Aug 2^nd, 2005, 1:23pm

Can people really continue ignoring this kind of success?

Title: Re: What I'm trying now
Post by JDH on Aug 2^nd, 2005, 1:54pm

on 08/02/05 at 13:23:08, vig wrote:

Can people really continue ignoring this kind of success?

Hard to believe isn't it?

2 Imitrex shots w/insurance $25.00[smiley=sayno.gif]

or

1 Spore syringe - $15.00
1 Myco-Bag - $17.00
Basically PF since 2/03, priceless!!! [smiley=thumb.gif]

Jim

Title: Re: What I'm trying now
Post by Carl_D on Aug 2^nd, 2005, 2:44pm

When I first did the treatment earlier this year (3 doses 5 days apart) I had fantastic results with only 3 real hits in a 2 month span. That was my greatest success with it. When I tried it again after I started cycling again in March, I did it in late April. The second time around was not a success, but the doses were very weak as well.
However, I am chronic and have been for 7 years straight, and understand that being chronic it requires more doses to stay PF. If you are episodic though, the success rate is much better, but again every individual is different and what will work for some does not work for everyone. This is also true with modern medicine as well so let us not forget that (right BoobP?) ;)

Peace, Love & Understanding,
Carl D

Title: Re: What I'm trying now
Post by nani on Aug 2^nd, 2005, 3:04pm

I respectfully request that this thread not be turned into and episode of:
The continuing saga of BobP vs the busters
Thank you.

It took me 18 months of reading other's success before I was ready to try this. Those threads continued to inspire me and give me hope. Sometimes, that's all we've got. I really am not here to discuss anything other than my experiences with this treatment. I really hope that, because of my history, I can give hope to someone else. That's all. I'll update tonight. :-*

hugs and love to all, nani

Title: Re: What I'm trying now
Post by nani on Aug 2^nd, 2005, 9:22pm

99% today. ;;D
A couple of "twinges" and a few moments of feeling the presence now and then. Still calling today a complete success.
I think I'm in a holding pattern...will update only as things change. Thank you all for your support and encouragement! :-*
hugs and love to all, nani

Title: Re: What I'm trying now
Post by E-Double on Aug 2^nd, 2005, 9:28pm

Title: Re: What I'm trying now
Post by cjc68 on Aug 4^th, 2005, 2:08am

;;D Good for you Sweetie! Keep it up and we may never hear from you again...lol but I know you wouldnt do that to us....You deserve it Nani!
Chris

Title: Re: What I'm trying now
Post by Sandy_C on Aug 4^th, 2005, 7:52am

Keep going, Nani! [smiley=thumb.gif]

Title: Re: What I'm trying now
Post by playmesomeblues on Aug 4^th, 2005, 6:22pm

I hope you have so many PF days that you lose count, Nani. Please keep posting your progress so we can share!!!

David

Title: Re: What I'm trying now
Post by nani on Aug 4^th, 2005, 10:55pm

Thanks for the good wishes, everyone. :)
Wednesday was a rough day. I got hit twice and shadowed some. So I got proactive and dosed with 3 HBWR seeds last night. Again, no noticeable "effect". I shadowed some during the treatment and some pretty easy shadows on and off today. My head is clear again tonight. :)
I tried the seeds this time, because a few people have found that dosing with them after a few psilocybin treatments stopped their cycle.
We'll see how it goes. :)
hugs and love, nani

edited to add: all in all, with this treatment, I'm getting really good results with only having to take any "medicine" every 6 - 8 days.

Title: Re: What I'm trying now
Post by BobG on Aug 5^th, 2005, 12:33am

:D You go girl!

Title: Re: What I'm trying now
Post by birdman on Aug 5^th, 2005, 8:27am

Nani, all the best wishes for you from here. My biggest regret from not going to the convention was not being able to meet you. You may not remember me but you helped me out when I first got here. I can honestly say I am hoping for your continued successes. I do not post often, read moslty, but felt I had to offer you my best wishes. Keep 'kicking and screaming'

Tim

Title: Re: What I'm trying now
Post by nani on Aug 5^th, 2005, 9:46pm

Thanks all!

Starting the count again:
1 PF day
;;D

hugs, nani

Title: Re: What I'm trying now
Post by lionsound on Aug 6^th, 2005, 1:39pm

on 08/05/05 at 21:46:22, nani wrote:

Starting the count again:
1 PF day
;;D

Still sounds fabulous to me!!! :)
Go nani!

[smiley=hug.gif]

Title: Re: What I'm trying now
Post by nani on Aug 6^th, 2005, 9:57pm

I know I'm supposed to avoid triggers for now. Sensory overload can trigger me. Too much noise, activity, light, etc. Today I had 12- 12 year old boys over for my grandsons birthday party. Yes...12 of them. :-/ I thought for sure I was screwed. I did have a couple of 10 minute shadows, but...that's all!!! :D
Otherwise...empty-headed and PF!!
hugs, nani

Title: Re: What I'm trying now
Post by Pinkfloyd on Aug 6^th, 2005, 10:43pm

on 08/06/05 at 21:57:54, nani wrote:

Today I had 12- 12 year old boys over for my grandsons birthday party.

Otherwise...empty-headed

See...here's the difference between people that know how to type and those of us that use two fingers.

We dual-indexers try to avoid such redundancies ;-)

Wait til next year when it will be 12, hormonally enriched pals, trying to order a subscription of Playboy on your pc while you're off trying to cut the cake ;-)

Glad to hear things went well nani
Bobw

Title: Re: What I'm trying now
Post by nani on Aug 6^th, 2005, 11:50pm

LMAO Bob!! [smiley=laugh.gif]

Title: Re: What I'm trying now
Post by Frank_W on Aug 8^th, 2005, 4:45pm

on 08/04/05 at 22:55:39, nani wrote:

FANTASTIC, Nani!!!! That's WONDERFUL news!

PFDAN's!!
-Frank

Title: Re: What I'm trying now
Post by rextangle on Aug 8^th, 2005, 5:36pm

Rock on Nani!!!! :D

Title: Re: What I'm trying now
Post by nani on Aug 8^th, 2005, 6:34pm

Thanks everyone. :)
Not a great day today (yesterday was!). Had to take the kids shopping. I HATE SHOPPING. In and out of several crowded stores, in the heat and bright sunlight. I had a 5 minute k6 hit at Target. I've had a k2 shadow for about an hour. Off to lie under the AC vent with a flat Red Bull...
I'd rather donate an organ than shop.... ~nani

Title: Re: What I'm trying now
Post by Grandma_Sweet_Boy on Aug 8^th, 2005, 6:52pm

Quote:

I'd rather donate an organ than shop

Nice to know I'm not the only female on the planet who hates shopping! ;;D

Sorry to hear you're getting these hits again. Was hoping maybe you'd be catching a better break than that.

Carol

Title: Re: What I'm trying now
Post by Sandy_C on Aug 8^th, 2005, 6:53pm

Common Nani! Sorry for the setback. Hang in there, we are with you. If anyone deserves some relief from this hell we are living in, it's YOU! [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif]

Love ya

Sandy

Title: Re: What I'm trying now
Post by nani on Aug 8^th, 2005, 11:03pm

Wow...my last post sounded pretty whiney...sorry, that's not really my style. Now that my head is "empty" again and my body temperature and sensory input processors are back to normal... let me say all in all, it could have been a whole lot worse. Since my head is so clear, and I've only got one more store to go to...I think tomorrow will be fine. :) I'm going at daybreak. ;)
hugs and love to all, nani

Title: Re: What I'm trying now
Post by Pinkfloyd on Aug 9^th, 2005, 12:22am

on 08/08/05 at 23:03:44, nani wrote:

I've only got one more store to go to...I think tomorrow will be fine. :) I'm going at daybreak. ;)

Doesn't Victoria's Secret have an online store? Its probably open 24 hours a day!! ;;D
If you go shopping there in the middle of the night, you'll most likely meet a few ch.com men there, shopping for their wives.

Bobw
(just trying to help with the treatment details)

Title: Re: What I'm trying now
Post by nani on Aug 9^th, 2005, 12:31am

LMAO! Uh, Bob, I don't think my 12 year old grandson wants any school clothes from Victoria's Secret. Well, at least I hope he doesn't. ;;D Online shopping is how I do Christmas, I can never seem to get it together enough to do it for Back-To-School, though. :-/
My head really is very clear tonight. Which makes me very happy :)

Title: Re: What I'm trying now
Post by birdman on Aug 9^th, 2005, 9:34am

Great news! Gotta love that clear head feeling! Here's to you, Nani.

Title: Re: What I'm trying now
Post by nani on Aug 10^th, 2005, 7:23pm

OK...I was a little worried for a while yesterday. I shadowed for a total of about 3 hours. But they were easy shadows and didn't last very long individually. And I spent Monday brazenly exposing myself to triggers. Today I've been about 98% PF and clear-headed. And no hits at all since Monday. :) Today is 7 days since my HBWR dose, and I really can't say I feel I need to dose again (hopefully not anytime soon, at least). Going very well, I think...
thanks again, everyone, for your support and encouragement.
love, nani :-*

Title: Re: What I'm trying now
Post by rextangle on Aug 10^th, 2005, 7:47pm

YEAH!!!!!! :D
Great news Nani... I hope this continues to work some magic for you...
Many PFDAN to you!
Rex ;)

Title: Re: What I'm trying now
Post by Flounder on Aug 10^th, 2005, 7:54pm

Nani,

I get what I call Twinges even after I've knocked out the beast. They are short twinges in the temple that last maybe a minute or so.

I usually have them a couple times a day but sometimes I'll go a few days without them. They go on usually for a couple months after the treatment has stopped me from getting hits.

They are not painful and really just a reminder of what I would normally be going through.

Just thought I'd share that.

Title: Re: What I'm trying now
Post by godsjoy777 on Aug 10^th, 2005, 10:16pm

Yeah Nani.....Keep it up....I'm watching and listening.....and praying for ya.....

Love,
Karen

Title: Re: What I'm trying now
Post by Langa on Aug 11^th, 2005, 10:36am

Nani, sorry for the late reply but I’m so thrilled to read about the success you’re having so far…praying the PFDAN’s continue – infinity… ;;D

Love,
Langa

Title: Re: What I'm trying now
Post by rextangle on Aug 11^th, 2005, 1:10pm

How are you today Nani? Great I hope...

Just realized that LANGA spelled backwards is AGNAL!!!
LMAO

Cheers,
Rex ;;D

Title: Re: What I'm trying now
Post by nani on Aug 11^th, 2005, 3:03pm

on 08/11/05 at 13:10:30, rextangle wrote:

How are you today Nani? Great I hope...

I'm pretty darned good, Rexie...thanks for asking. Thank you all for asking. I have a moment or two of shadows today. Literally a moment or two. They are more like the twinges that Mitch described, but a little painful. I get the painless ones, too. My head is clear and empty 99% of the time. Just an occasional presence popping in to remind me I'm still fighting something. I have no immediate plans on dosing again.

Which brings me to yet another question for my learned friends...
if this keeps up, when should I consider a maintenance dose?

hugs and love, nani

Title: Re: What I'm trying now
Post by rextangle on Aug 11^th, 2005, 3:33pm

Nani,

I would suggest that you redose soon. Same amount.
Check with Bob W, but I'd thind he'd agree.
This is great! :D
Rex

Title: Re: What I'm trying now
Post by unsolved1 on Aug 11^th, 2005, 3:53pm

Nani,
I've been quietly following this story. Glad to hear you're feeling "Pretty darned good" !! Keep it up !!

PF Wishes,
UNsolved

Title: Re: What I'm trying now
Post by Pinkfloyd on Aug 11^th, 2005, 5:35pm

on 08/11/05 at 15:33:09, rextangle wrote:

I would suggest that you redose soon. Same amount.
Rex

A few thoughts...
One, it sounds like things are continuing to improve a little each day which is very good and as you can tell, we're all very happy for you Nani. ;;D
I think you're time on the kudzu may have helped this treatment in that it gave you an extended time away from the normal prescription meds prior to trying this.

I would be ready to dose fairly quickly if you begin to get some shadows or tweaks that leave you thinking, hmmm, that didn;t feel right.
The longer you can go getting a feel for these little hits you'll become more confident that it's just little reminders as they fade away. If you get one thats more than a reminder, and more of a warning....you'll know its time to dose. Each of us becomes our own best radar.

If they fade away completely, I would probably wait until the first sign of something brewing but not wait more than 60 days from the last dose.
If they aren't gone COMPLETELY by the 30 day mark, I'd probably dose then.
I'd also stay at the same dose, or just a little less. Same dose if you're dosing because things are escalating....slightly less if you're dosing to stay pain free.

JMHO,
Bobw

Title: Re: What I'm trying now
Post by nani on Aug 14^th, 2005, 10:32pm

After some concerning developments, I dosed again tonight. I used 3 HBWR seeds, as I did last time.

Friday was a stormy day here. Lots of storm systems moving in and out. As the day went on, my shadows became more intense ( hovering around k 3) and I actually had 2 "mini" hits (less than 10 minutes at about k6). I was out all afternoon and evening and didn't need to abort, but considered dosing Saturday. Saturday was OK in the morning, I felt "clear" and PF. By late Saturday afternoon I started getting shadows that lasted longer than my recent ones. Probably 30 - 40 minutes at a time. By last night, I was "ping pong" shadowing. I'd shadow for about 20 minutes on the left, felt it go and less than 5 minutes later, would be shadowing on the right. This went on most of the evening. During the night, I probably woke up 6 times with hard shadows. They also "ping-ponged".

I feel like it's trying to morph and breakthrough, so I thought another dose might help put it back to sleep. I dosed 3 hours ago and have had "no effect" again. I've not had any hits and only a couple of ping pong shadows.

I'll keep you posted. :)

edit to add: This is 11 days since my last dose. :)

Title: Re: What I'm trying now
Post by sundancer on Aug 14^th, 2005, 11:03pm

Nani...so glad you are getting some relief...best wishes.

Title: Re: What I'm trying now
Post by rextangle on Aug 15^th, 2005, 10:56am

Let's hope this does it for you!!! [smiley=sayyes.gif]

Title: Re: What I'm trying now
Post by pattik on Aug 15^th, 2005, 1:57pm

I'm really pulling for you, Nani, and I'm glad that you are keeping us posted on your progress. You are really helping a lot of us with your information. [smiley=hug.gif] Pat

Title: Re: What I'm trying now
Post by javi_spain on Aug 15^th, 2005, 4:24pm

Nani,

Your fight is inspirational.

Javier

Title: Re: What I'm trying now
Post by birdman on Aug 16^th, 2005, 9:56am

Glad to see progress. Both you and clusterchuck have been an inspiration for me. I am gonna give it a go next cycle. Thanks for keeping us informed. It makes such a difference. Keep fighting!

Title: Re: What I'm trying now
Post by Beastfodder on Aug 16^th, 2005, 10:48am

Nani,

It's been a while since my last post - but a lot of that's down to the medication route I chose to take giving pf days. Just hope this treatment works for you as well as it has for a namby pamby episodic sufferer like me.

Huge congratulations and respect for all your superb and unequivocal support on the board to all suffrers, and can't forget too those who are supportive of alternative therapies - Pinkfloyd.

This is the one site that when a CH sufferer finds it, it will change their life.

Guess I'm one of those 'case studies' for whom mushrooms has really given me a rod to beat these clusters properly. But then it's a bit like jumping off a very tall building (so far so good, so far so good then back to earth).

Title: Re: What I'm trying now
Post by nani on Aug 16^th, 2005, 1:33pm

Thanks, all. :)
I'm still feeling pretty good. A few "twinges", some with a bit of pain, many without any pain. I'm mostly "empty" headed, too.
Please understand that I don't think chronic is any "worse" than episodic. It ALL sucks. The reason I like to post my progress, is that I'm one of those tough cases that traditional meds don't help much. If they do work, it's almost certain that they will stop working eventually. I expect that my alternative battle is not over yet. I am looking forward to getting to the point of only maintenance dosing. Even if it's once a month, that would be great. I was getting pretty tired of the bucket o' pills I was having to take everyday.
I strongly encourage folks to look hard at this treatment. It has worked wonders for many. And, for me at least, the fear of the "tripping" effects has not come to fruition.

pf wishes and hugs, nani

Title: Re: What I'm trying now
Post by SteCo on Aug 16^th, 2005, 2:50pm

on 08/16/05 at 13:33:35, nani wrote:

Thanks, all. :)
I'm still feeling pretty good. A few "twinges", some with a bit of pain, many without any pain. I'm mostly "empty" headed, too.

Congrats on the continued success! I assume by mostly "empty" headed you meant that as a good clear head feeling.

Quote:

Please understand that I don't think chronic is any "worse" than episodic.

Episodic here, so I beg to differ...year round with this stuff...OMG.

Quote:

the fear of the "tripping" effects has not come to fruition.

For some reason nani seems to have a high tolerance for it....so no trippy effects.
Also....for many folks.....small doses = one or maybe two beers, have proven to be very effective.

Also better to remain med free as it is theorized some meds block the good the alt. therapy provides.

Just think.....with a little fungi or seeds, and O2 as an abort for the occasional break thru's and/or help with detox.....you can toss the bucket O' pills down the drain!

Please keep reporting Nani....be a thread hog!!! ;;D
SteCo

Title: Re: What I'm trying now
Post by Chillrmn1 on Aug 16^th, 2005, 3:17pm

Ditto on all SteCo wrote.

Glad you're feeling better Nani!

Bob

Title: Re: What I'm trying now
Post by LeeS on Aug 18^th, 2005, 9:09am

How's it going Nani?

-Lee

Title: Re: What I'm trying now
Post by nani on Aug 18^th, 2005, 10:19am

Well, after my last dose (Sun) I had 2 very good days. Not 100% PF, but close. Late yesterday morning another batch of storm systems moved in. (I'm probably the only person in the scorched desert of NM to pray it "won't" rain :-[ ) Well, it was also very hot. I shadowed a lot. First, I tried a SPUT, it didn't help. Then I tried a Red Bull, also didn't help. Finally I gave in and took an Excedrine migraine, it helped a little. So far, today has been clear and PF. :)
So, I'm in a holding pattern. Awaiting advice from the experts to see what to do next, IF I need to dose again.

ever optimistic and fully enjoying the pf time I get, nani

Title: Re: What I'm trying now
Post by Sandy_C on Aug 18^th, 2005, 11:10am

Keep going Nani. We're with you! Vibes and hugs coming your way!

Sandy

[smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif]

Title: Re: What I'm trying now
Post by godsjoy777 on Aug 19^th, 2005, 8:38am

I'm watching too, Nani.....Keep posting....I still have some seeds for when the time comes.....for when the bell tolls......Since the last cycle finished last May, I am probably good for awhile.....BUT.....

I've been decreasing the Zonegran.....ever so slowly....just getting prepared....I'm down to 100 mgs.....down from 250mgs.....

Blessings!
Karen

Title: Re: What I'm trying now
Post by nani on Aug 19^th, 2005, 9:40am

Well, these storm fronts are killin' me. :(
Thank goodness, I have not had any hits, but the shadows are quite bothersome. So, since I can't avoid my weather "trigger", I will dose again tomorrow night with 6 HBWR seeds. I'll keep you posted. :)
hugs, nani

Title: Re: What I'm trying now
Post by rextangle on Aug 19^th, 2005, 1:02pm

Yeah, I hear you Nani, my brain has become a barometer.
Dosed with 3 seeds 2 days ago... relief is on the way!
Be well and good luck!
Rex

Title: Re: What I'm trying now
Post by nani on Aug 20^th, 2005, 10:11pm

Well, I dosed tonight with 6 HBWR seeds. Again "no effect" ... I'm really beginning to wonder where this high tolerance is coming from LOL...
I am, however, feeling some discomfort in my chest and left arm. I'm not overly concerned, because it's not terribly painful and it comes and goes. It does concern me enough, though, to consider fewer seeds, or going back to mushrooms should I need to dose again soon. I cut my verap (for high BP) down to 240 mgs a day for the last 2 days also. Will resume my regular dose of that tomorrow. I've shadowed a little, nothing major. I am prepared for any hits or bad shadows that might occur. I'll keep you all posted. Thanks again for your concern and encouragement. hugs, nani

Title: Re: What I'm trying now
Post by nani on Aug 23^rd, 2005, 8:19am

2 PF days. :D

Title: Re: What I'm trying now
Post by Chillrmn1 on Aug 23^rd, 2005, 8:59am

Absolutely GREAT news Nani!!!! So glad to hear :-) :-) and happy for you!

Bob

Title: Re: What I'm trying now
Post by cjc68 on Aug 24^th, 2005, 5:38pm

Hello Nani, just wanted to stop by and see how you were doing, glad to see that you are getting some PFDN"S. My cycle has finnaly ended. Its been about 2 weeks with no attaks. towrds the end I was doing the hanging upsidedown...not sure if that helped or not but I was also drinking white grape juice and eating lots of fish...still am just to be on the safe side. Anyway I just wanted to see how you are and say hi Sweetie! Keep in touch, I will!
Chris

Title: Re: What I'm trying now
Post by nani on Aug 24^th, 2005, 5:53pm

Chris, I'm so glad your episode is over! Hooray!
You's better keep in touch, homie...I'm going to. :)

Yesterday was also PF. :) That's 3 in a row again. I've had some shadowing today, but nothing major. :)
Gettin' my life back... :)
hugs, nani

Title: Re: What I'm trying now
Post by lionsound on Aug 24^th, 2005, 8:54pm

Yay, Chris!

Go Nani !!:) [smiley=hug.gif]

Title: Re: What I'm trying now
Post by nani on Aug 26^th, 2005, 4:18pm

Still about 99% PF. :)

Title: Re: What I'm trying now
Post by nani on Aug 27^th, 2005, 2:49pm

I've just spent the last 5 hours out in the hot sun at a soccer tournament. :-/ I hate tournaments...they make me wish that the kids suck so I can go home. :'( My 12 year old's team won the damn thing. LOL...
Anyway...
Once I got home, out of the sun and heat and into the A/C, I had a very tiny, 5 minute k2 hit. :D

This is the first year in 6 years of soccer that the tournament didn't kick my ass. I'm almost looking forward to the rest of the season. Like I said before...gettin' my life back. :D
hugs, nani

Title: Re: What I'm trying now
Post by Chillrmn1 on Aug 27^th, 2005, 8:22pm

Looks like you are gettin your life back.........I'm so glad for you!
You most certainly deserve it!!!!!!!:-)

Bob

Title: Re: What I'm trying now
Post by Grandma_Sweet_Boy on Aug 27^th, 2005, 8:28pm

Good for you Nani and it's great that you're keeping everyone else updated. It sure does give hope to a lot of folks.

Keep up the good work. I look forward to you being able to post about your PF time stretching out to week,then months, and on and on.

Take care
Carol

Title: Re: What I'm trying now
Post by JDH on Aug 27^th, 2005, 9:39pm

on 08/27/05 at 14:49:42, nani wrote:

Like I said before...gettin' my life back. :D
hugs, nani

Nice, that's great to hear!
May it never return.

Jim

Title: Re: What I'm trying now
Post by godsjoy777 on Aug 31^st, 2005, 9:07pm

Yippeeeee Nani.....So glad to hear of your progress....keep us posted....All this documentation does me good....

Love and blessings,
Karen

Title: Re: What I'm trying now
Post by nani on Sep 1^st, 2005, 8:36am

Today is 12 days since my last dose. It's a new record. :D

I'm still about 98% PF and don't feel a need to consider dosing again soon at this point. The last 2 days have been interesting, though. I've had pain and/or pressure in the trigger point way up in my nose at times. My allergies are bothering me, too. It seems that when I take a claritin for my allergies, the pain/pressure in my nose stops. I'm still not sure if I'm having actual CH activity or the sinus pressure is just irritating a spot where the pain receptors haven't shut down yet.

Either way, I'm still feeling pretty damned good. :D

hugs, nani

Title: Re: What I'm trying now
Post by pattik on Sep 1^st, 2005, 8:47am

Great news, Nani. I'm always aware of that "trigger point" even when I'm out of cycle. I have mild to moderate allergy issues on and off year round, and the slightest stuffiness or irritation to that spot is really noticable, and gets me wondering about the beast. Maybe those nerve endings are now and forever more sensitive [smiley=huh.gif]. Hope this stretch of PF time goes on and on. [smiley=hug.gif]
Pat

Title: Re: What I'm trying now
Post by nani on Sep 1^st, 2005, 11:38am

on 09/01/05 at 08:47:52, pattik wrote:

Maybe those nerve endings are now and forever more sensitive [smiley=huh.gif].

Goodness, I hope not. It's one of my more panic inducing spots. Burning and stabbing there often precedes a "big" hit for me. The first time it happened the other day, I got pretty scared and did a SPUT right away. The pain in my nose never stopped, but the CH never happened. When I felt it yesterday, I didn't SPUT, just to see what might happen. Again, no CH.
Since Claritin eased the pressure and pain both times, I'm still inclined to think the allergy symptoms irritated it. I may have to wait a while to see if a maintenance dose kills it off. :)

Title: Re: What I'm trying now
Post by lionsound on Sep 3^rd, 2005, 7:06am

on 09/01/05 at 08:36:55, nani wrote:

Either way, I'm still feeling pretty damned good. :D

Title: Re: What I'm trying now
Post by nani on Sep 4^th, 2005, 10:51am

14 days :)

Title: Re: What I'm trying now
Post by E-Double on Sep 4^th, 2005, 11:34am

[smiley=sayyes.gif]

Title: Re: What I'm trying now
Post by Chillrmn1 on Sep 4^th, 2005, 2:48pm

14 DAYS :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) ;-)!

Title: Re: What I'm trying now
Post by TxBasslady on Sep 5^th, 2005, 12:35am

Great news, Nani. ;;D

Congrats!!!

Jean

Title: Re: What I'm trying now
Post by rextangle on Sep 6^th, 2005, 4:31pm

What's the score today Nani???? Still counting I hope!!! [smiley=sayyes.gif]

Title: Re: What I'm trying now
Post by nani on Sep 6^th, 2005, 11:45pm

on 09/06/05 at 16:31:51, rextangle wrote:

What's the score today Nani????

17 days :)

Title: Re: What I'm trying now
Post by Chillrmn1 on Sep 7^th, 2005, 3:37am

Well here ya go: 17 :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) :-) wonderful smiling days!

Keep it going Nani, we're all pulling for ya!

Bob

Title: Re: What I'm trying now
Post by sandie99 on Sep 7^th, 2005, 7:17am

Go Nani! :) :) :)

Let us know how it's going! [smiley=sayyes.gif]

Sanna

Title: Re: What I'm trying now
Post by Sandy_C on Sep 7^th, 2005, 7:25am

Damn, Nani! That's great. You go girl!

[smiley=me&mb.gif]

Sandy

Title: Re: What I'm trying now
Post by unsolved1 on Sep 7^th, 2005, 10:52am

Wonderful news Nani :D

PFDAN Forever
Michael

Title: Re: What I'm trying now
Post by rextangle on Sep 7^th, 2005, 1:27pm

FUCKINEH!!!! [smiley=thumb.gif]

Title: Re: What I'm trying now
Post by Flounder on Sep 7^th, 2005, 3:26pm

Hey, that's Awesome Nani!!!!!!!!!!!!!!!!!!!!!!!

Title: Re: What I'm trying now
Post by nani on Sep 10^th, 2005, 9:11am

Today is my 21st day. ;;D
I know it's early, and the day isn't over. I know that I'll be spending 3 hours on a hot and sunny soccer field, and I'm not worried. I have no reason to believe that I'll get hit today (or even shadow). I'm even beginning to think I can't jinx myself by proclaiming my PF-ness.
21 days!!!! Three weeks!!! I haven't had this much PF time since 1999.
Thank you Clusterbusters for sharing your stories and helping me through this treatment with your advice. Thank you everyone for encouraging and supporting me through this.

I love you guys!! I'm lovin' life again, too!!!

hugs, nani

Title: Re: What I'm trying now
Post by E-Double on Sep 10^th, 2005, 9:19am

:-* ;;D

Title: Re: What I'm trying now
Post by Chillrmn1 on Sep 10^th, 2005, 9:49am

So happy for you Nani and so inspiring for all! Looks like you're up to 21 :-) smiling wonderful days now.............keep it going, keep it going!

Enjoy a great and wonderful pain free day today!!

Hugs,
Bob

Title: Re: What I'm trying now
Post by vig on Sep 10^th, 2005, 9:58am

;;D

Title: Re: What I'm trying now
Post by pattik on Sep 10^th, 2005, 10:06am

;;D21 days...woo hoo!!!!! [smiley=sayyes.gif]
hugs, Pat

Title: Re: What I'm trying now
Post by BikerBob on Sep 10^th, 2005, 1:06pm

Congratulations, Nani [smiley=sayyes.gif]

21 days PF from the Clusterbuster's treatment after 5 years chronic is truly inspiring.

Best wishes for continued PF success [smiley=hug.gif]

BB

Title: Re: What I'm trying now
Post by rextangle on Sep 10^th, 2005, 1:51pm

Happy 21st Nani!! Does that mean you can drink now without getting hit??? ;;D

I'm so glad this is working for you!!!

I raise my Red Bull to you!
Rex ;)

Title: Re: What I'm trying now
Post by lionsound on Sep 10^th, 2005, 8:40pm

YAY, NANI !!! :D

tons of [smiley=hug.gif]'s

-Rori

Title: Re: What I'm trying now
Post by Chillrmn1 on Sep 14^th, 2005, 5:24am

Time for a report Nani, how are you doing? We're all sitting on pins and needles and hoping to here continued success from you.

Please let us know.

Hugs,
Bob

Title: Re: What I'm trying now
Post by nani on Sep 14^th, 2005, 7:19am

25 days. ;;D I'm looking forward to Monday. Then I won't be chronic anymore. :D
I'm still getting an occasional nose "stab"...but I'm sure it's related to sinus congestion now.
Thanks all.
hugs, nani

Title: Re: What I'm trying now
Post by Chillrmn1 on Sep 14^th, 2005, 8:51am

GREAT report Nani!!!! Thanks for letting us know :-).

3 more days and you got 4 weeks, YAY! Do you remember how to spell Episodic ;-)?
Bob

Title: Re: What I'm trying now
Post by godsjoy777 on Sep 14^th, 2005, 10:38pm

Yippeeee Nani.....Yes I am still watching tho I'm not talking much here....I still have some of those seeds in my safekeeping if the need ever arises.....

You are still doseing with the seeds....right?

Love and blessings,
Karen

Title: Re: What I'm trying now
Post by nani on Sep 14^th, 2005, 11:46pm

on 09/14/05 at 22:38:13, godsjoy777 wrote:

You are still doseing with the seeds....right?

I haven't dosed with anything since August 20th, Karen. :)

Since the inception of this route, I've used the following:
1 gm mushroom (tea) 7/20
1.5 gm mushroom (tea) 7/26
3 HBWR seeds 8/03
3 HBWR seeds 8/14
6 HBWR seeds 8/20

I've just completed day 26. :D
I've also just sent my HA diary to Dr Sewell at Harvard. It was nice to just ditto ( " ) the PF days.

An interesting aside: I've done some reading about using psilocybin and kudzu to treat alcoholism and drug addiction. I can now say with certainty, that neither one does squat for chocolate addiction. :-/
But...who cares? I'm PF!!!!
hugs, nani

Title: Re: What I'm trying now
Post by Chillrmn1 on Sep 15^th, 2005, 5:23am

Hello Nani,

I certainly hope you don't mind what I'm about to say, for I would never try to start a flame war on your miraculous thread and out of my high respect for you, but feel I must say this for the good of the people. I know the subject of using the alternate treatment for CH therapy is very controversial for some. I'm so happy and glad for all you sufferers that can find relief and satisfactory response with the use of FDA approved traditional/conventional meds for your CH condition. But some of us don't get those kind of results, myself included, and based on Nani's history neither can she, at least continuously and on going where they remain effective. I had become very desperate myself due to non-efficacy of conventional meds. I had to make the choice to try the alternative treament for I had started to question myself and my wife on how I could continue living this life in such misery and pain because of my CH. The alternative treatment (ClusterBuster) method gave me my life back and now I can sincerely say I'm living a quality life.

For all those that have followed Nani's history and uses of various treatments, you know she's damn near tried them all, if not all. She made the decision to try this treatment and you can all see the positive results she's receiving.

I write this because I know the misery and pain this disease can cause and depresses me to see others having to suffer, possibly needlessly, or at least can be given an option to decrease the severity of this disease.

I understand the moral, ethical, and legal issues some of you may have with this therapy. But if you're not responding satisfactorily with conventional meds, this is a valid option of treatment. This treatment is for real and works for most, if not all, when following the recommendations as listed on Clusterbusters.com. Again, I'm only writing this because I know how it helped with my CH and is quite obvious how it's helping Nani.

And Nani, I certainly hope you don't mind me writing this on your thread, I'm only trying to help others and am so happy for your results. I'm certainly not trying to hijack your thread.

AND PLEASE, IF ANY OF YOU FEEL THE NEED TO ARGUE MY POST, DON'T DO IT ON NANI'S THREAD, START A NEW THREAD OR PM ME DIRECTLY, I'LL RESPOND. I FEEL VERY STRONGLY AND SUPPORTIVE OF THIS TREATMENT OPTION. IT GAVE ME MY LIFE BACK.

And with that all my fellow CH sufferers, I'll close with one of my favorite Forest Gump's quotes "And that's all I have to say about that."

Namaste!
Bob

Title: Re: What I'm trying now
Post by nani on Sep 15^th, 2005, 7:33am

I don't mind Bob. :) But I am firm in my commitment to keeping this thread all about the info, and not about the argument. ;)
Bob is right folks, it's a tough choice to make for some (myself included) but the results often speak for themselves. It doesn't work for everybody, but when it does work...it really works well. It took me 18 months to try it, and I did so only after everything else failed, but I'm happy as heck that I did!
hugs, nani

Title: Re: What I'm trying now
Post by Frank_W on Sep 15^th, 2005, 8:02am

I don't care what form the relief takes, Nani. I'm just glad you are pain-free, at long last! :)

Title: Re: What I'm trying now
Post by JDH on Sep 15^th, 2005, 8:55am

I love happy endings.
WTG Nani! [smiley=sayyes.gif]

Jim

Title: Re: What I'm trying now
Post by SteCo on Sep 15^th, 2005, 9:43am

Quote:

I'm looking forward to Monday. Then I won't be chronic anymore. :D

Well being one that has never looked forward to Mondays.....I will look forward to this one :) and your official announcement. About the chocolate thing...dont fight it just enjoy it...I do!!! Personal preference..milk chocolate....mmm...mmmmm.....good!

Chillrmn1 (Bob) Namaste my friend and great post!!!

Just past my 4th yr with the alt. therapy treatments and I have never looked back for anything else..Placed the trex in the drawer and there is stays..just use O2 for a backup.

May it long continue Nani!!!!
SteCo

Title: Re: What I'm trying now
Post by ArCane on Sep 15^th, 2005, 1:10pm

WTG nani!!! You deserve all the PF time you get ;). Im truely happy for you. [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif]

Allen

Title: Re: What I'm trying now
Post by rextangle on Sep 15^th, 2005, 2:30pm

SUPERMEGA-BUMP!!!! ;;D

This is so cool Nani! I'm so happy for you....
STAY PF FOR LIFE!!!! ;)

Title: Re: What I'm trying now
Post by nani on Sep 19^th, 2005, 6:39am

It's official! After 5 years of being chronic, I'm now an episodic. ;;D
The best part, for me, is that it's a med free remission.
I'm planning on a maintenance dose in another 30 days, unless I start getting signs that I need to dose again. This treatment has been a Godsend for me. I haven't felt this good in a very long time. http://bestsmileys.com/happy/3.gif

Thank you all for your encouragement and support. Thank you BobW and the clusterbusters for all the advice as well. Thank you DJ for giving us this wonderful place to share our successes so that others can learn from them. (I feel like I won an Emmy, LOL)
hugs and love,
nani, the Episodic

Title: Re: What I'm trying now
Post by E-Double on Sep 19^th, 2005, 7:18am

And the award goes to........... ;;D

Awesome to hear this Nani!!!

Bob, great post. Felt like it was written to my wife.

Best to all and continued success.

Eric

Title: Re: What I'm trying now
Post by LeLimey on Sep 19^th, 2005, 7:26am

HURRAY!!!!

Oh Nani I couldn't be happier for you!

http://i10.photobucket.com/albums/a139/lelimey/PartyTime.gif

I'm going to celebrate here for you... with you in spirit hon!

lots of love
Helen XXXXX

Title: Re: What I'm trying now
Post by sandie99 on Sep 19^th, 2005, 7:37am

Nani,

That's absolutely brilliant!!!! :D
Congratulations! You've deserved to be PF! :)

Sanna

Title: Re: What I'm trying now
Post by sandie99 on Sep 19^th, 2005, 7:40am

on 09/15/05 at 08:02:33, Frank_W wrote:

I don't care what form the relief takes, Nani. I'm just glad you are pain-free, at long last! :)

I agree. Being PF is what matters and not the method how it was achieved. :)

Sanna

Title: Re: What I'm trying now
Post by Sandy_C on Sep 19^th, 2005, 7:46am

http://bestsmileys.com/fireworks/3.gif

CELEBRATION TIME!!!!!

[smiley=sayyes.gif]

Sandy

Title: Re: What I'm trying now
Post by LeeS on Sep 19^th, 2005, 8:33am

Absolutely superb Nani! 8)

Long may it continue.

-Lee

Title: Re: What I'm trying now
Post by pattik on Sep 19^th, 2005, 8:39am

http://i3.photobucket.com/albums/y71/northcolor/animation/the20wave.gif
Awesome! Congratulations, Nani. You're persistance has paid off, and you have helped all of us who have been watching your progress. ;;D

Title: Re: What I'm trying now
Post by rextangle on Sep 19^th, 2005, 10:09am

Nani, can't wait to see you to celebrate your PF life! :D
Rex

Title: Re: What I'm trying now
Post by Flounder on Sep 19^th, 2005, 12:08pm

WOOOOOHOOOO0!!!

Congrats Nani!!!!!!!!!!!!!!!!!!!!!!!!!!

Title: Re: What I'm trying now
Post by ArCane on Sep 19^th, 2005, 12:28pm

GOOOOOOOOOOOOOOOOOOO NANI!!!!!!!!!!!!!!!!!!!!!

Title: Re: What I'm trying now
Post by SteCo on Sep 19^th, 2005, 12:31pm

So a great Monday after all!!! Congrats Nani!

Title: Re: What I'm trying now
Post by maffumatt on Sep 19^th, 2005, 5:35pm

Good Job Nani, keep it up...........

Title: Re: What I'm trying now
Post by Chillrmn1 on Sep 19^th, 2005, 5:47pm

Nani,

I don't have all the words to describe my happiness for you....CONGRATULATIONS!!! You've always been here to welcome new people, offer help and advice, and support us all.

Of all people, you most certainly deserve this relief and PF time..........long may it continue! :-) :-) :-) :-) :-)

Sincerely,
Bob

Title: Re: What I'm trying now
Post by nani on Sep 19^th, 2005, 10:35pm

Thank you all for the congrats and good wishes. :)
I love you all. I've spent most of today floating around on cloud 9.
I know the war isn't over, but I've won an important battle, and in the process, learned what my best weapon is. I won't update this thread unless things change for the worse, or I take a maintance dose.
Thank you all.
hugs, nani the episodic...gosh I just LOVE saying that! ;;D

Title: Re: What I'm trying now
Post by nani on Sep 24^th, 2005, 3:25pm

Wahhh! [smiley=bigcry.gif]
Sorry, I had to indulge myself and let out a big whine. Well, I guess a new episode has started... :-/
I have to drive a 75 mile round trip most afternoons to pick up kids in Albuquerque. It's been hot. And stormy. And when the sun shines, it's really bright. 3 big triggers. On Wednesday, during that drive, I had a 15 minute, k2 shadow. I wasn't concerned and figured I'd
watch for more signs. Yesterday, I got hit. It was different, though. It took a full 30 minutes to ramp up to a k8, but it was that sharp, burning, unmistakable pain. It was as if I could feel the pain spreading by the millimeter. Which, in a way, made it much harder to deal with. But in a way, being that I was stuck in the middle lane of the Interstate during rush hour traffic, it made it possible for me to get home before it reached it's peak. The other kid in the carpool kept asking why my head was so close to the A/C, my 12 y.o. said..."OH, she must have a headache. Don't talk to her, she'll just grunt back." LOL When the hit started, I did a very tiny SPUT...more like a sliver, since I was driving. Perhaps that slowed it down?
Anyway, my eye was tearing and my nose was running, but in Slo-mo. When I got home I got my icepack and another SPUT and rocked for another 30 minutes. Then it started to SLOWLY ramp down. Total time:
2 hours 45 minutes. I don't recall ever having such a long one. I'm still sore. I continued to have heavy shadows into the evening and during the night. I probably woke up a dozen times.
So, this morning I dosed with 4 HBWR seeds. Since 6 made my chest feel uncomfortable last time, I decided to stay with a low dose. As I expected, I have NO psychedelic (or other) effects, and I've been shadowing on and off through the treatment.
Last October, I had a severe "cycle", so I guess I shouldn't be surprised. And...35 days PF is DAMN good!

I'll keep you posted. hugs, nani

Title: Re: What I'm trying now
Post by Chillrmn1 on Sep 24^th, 2005, 3:41pm

Hi Nani,

Sorry to hear you're gettin hit. Please keep us updated on your results and progress. Hope to see you're PF tomorrow!

Wishing you the best,
Bob

Title: Re: What I'm trying now
Post by nani on Sep 24^th, 2005, 10:23pm

I'm happy to report that my head is "empty" tonight. :)
I shadowed until 7 PM and have been PF and clear since.

Title: Re: What I'm trying now
Post by rextangle on Sep 25^th, 2005, 2:17pm

Dammit Nani! That sucks... I hope that it won't come back!

Title: Re: What I'm trying now
Post by nancyc on Sep 26^th, 2005, 2:22pm

Aw, Nani, sorry to hear about the random hit...i know about those LOL....seems like my biggest trigger rite now is stress...this causes my bulging discs in my neck to act up thus triggering my chs....but i can also relate to getting too much sun and heat and it triggering the chs....I am praying for you ....I wish I had the nerve to get off all meds and try the treatment again...with working `12 to 16 hours a day, all i can rely on is imitrex shots...that sucks bigtime...hang in there, sis...and know prayers are going up for you! smiles,nancyc

Title: Re: What I'm trying now
Post by nani on Sep 26^th, 2005, 10:30pm

I know what you mean Nancy. The detox is the scariest part for most of us. I was lucky, I guess, since I haven't been able to use triptans for so long. When I got hit on Friday, I realized that if I'd had trex, I probably would have reached for it. SPUTS can help with detox hits, if you ever want to try again.
Meanwhile, I'm not worried. Since I dosed on Sat, I've only had very mild, "fluttery" shadows. I'm going to keep plugging away at this. It may fail me eventually, but because of the in-frequency (is that a word?) of the dosing, it could take a REALLY long time until the beast figures it out and morphs. Or...maybe it'll work forever... :)
Thanks all. hugs, nani

Title: Re: What I'm trying nowI
Post by Sandy_C on Sep 27^th, 2005, 7:01am

I'm so sorry the beast paid you a visit. Let's just hope that was his way of saying goodbye forever to you.

Love you much.

Sandy

Title: Re: What I'm trying now
Post by LeeS on Sep 27^th, 2005, 11:05am

on 09/26/05 at 22:30:15, nani wrote:

Or...maybe it'll work forever... :)
Thanks all. hugs, nani

Yep, keep battling nani, one never knows :)

-Lee

Title: Re: What I'm trying now
Post by Brinkleigh on Sep 27^th, 2005, 12:24pm

I'm new to this site, but I've been reading about your "other" alternative ...
my husband is a little like you, every med he is on he seems to get ammune to ... by "other" alternative can you be a little more specific ... I think we would like to try this also. I think I know, but ...

Thanks and good luck
Sheri

Title: Re: What I'm trying now
Post by SteCo on Sep 27^th, 2005, 4:32pm

on 09/27/05 at 12:24:05, Brinkleigh wrote:

I think I know, but ...

Hi Sheri.....look here --> www.clusterbusters.com
Warning on the trex (I saw your other thread)..for some folks, the trex may cause rebounds. So keep an eye on that just in case.

Try the O2 again..check out the oxygen button on the left of this screen to be sure your O2 setup is as recommended, this must be followed to a "T" for it to work quickly.....better to use that than the trex IMHO

Also....with the alt. therapy method, it is advised to detox/(taper down and off, if the med is as such) from all CH meds for about a week, easier said than done for sure, but some of those meds may actually block the good/healing effects of alt. therapy. Another item that may make detox more bearable; for some folks, the intensity and frequency of CH's may actually decrease YMMV. Again, the O2 may be of help with the detox period (and may start working again) and provide additional aid with the therapy treatments.

Good luck on your research!
SteCo

Title: Re: What I'm trying now
Post by nani on Sep 27^th, 2005, 6:30pm

Thanks for getting that, Steve. :)
Look into it Sheri. The best treatment I've tried so far!

Still experiencing teeny-tiny shadows.
hugs, nani

Title: Re: What I'm trying now
Post by lionsound on Sep 27^th, 2005, 8:12pm

[smiley=hug.gif]'s for you nani!

wow! 35 days was amazing..and so is evey PF moment now that you can start counting again! :)

Title: Re: What I'm trying now
Post by Brinkleigh on Sep 28^th, 2005, 11:56am

Thank You for the great info, I just read the entire information on Clusterbusters ... It is so amazing and informative ... I'm going to talk to my husband about it, it may be a route that will have to consider. We will just have to see. He is an eposodic not chronic, so I'm not sure. I know that he is willing to do anything, just seems scary to lose the Imitrex ...
I will tell you all that last night, he took melatonin for the first time and did not have 1 headache! Yeah, he slept through the night ... What an awesome feeling! We'll have to see how it goes - he has been 24 hours of pf, for now. He still isn't up to par, but at least we've kept the beast out of control, for now.

Thanks for all of the info and great support!
Sheri

Title: Re: What I'm trying now
Post by nani on Oct 3^rd, 2005, 11:35pm

Let us know how things work out, Sheri. :)

Update:
Well, after my last dose, I had a week of shadowing. Mostly easy, short shadows. On Sunday, I got hit twice. And today I got hit once. So, tonight I dosed with another 5 HBWR seeds, soaked for 3 hours.
Again, no noticeable effects, and no pain or discomfort in my chest. I shadowed for about 15 minutes during the treatment, but have been clear and PF since. I'll let you know. :)
hugs, nani

Title: Re: What I'm trying now
Post by ozzy on Oct 4^th, 2005, 8:36am

I'm glad that this is working for you Nani. We *will* find a way to stay PF

Ozzy

Title: Re: What I'm trying now
Post by cjc68 on Oct 6^th, 2005, 3:35am

Glad to see that your hanging in there Nani! One of these days I will make it back home and when I do we will have to visit! I have another cycle starting but at least I had 60 PFD's. This time around I am trying prednisone, verapamil, zyprexa and O2.
Good Luck Nani! Talk to you later!
Chris

Title: Re: What I'm trying now
Post by jckgales on Oct 6^th, 2005, 4:22pm

Nani,
I'm Prayin for ya, and all you clusterheads. Im going into 3rd yr chronic and am ready to try what your doing Can ya help? Please send me in the direction. had the worst night last night, gettin hard to deal with. best wishes to you
Jackie

Title: Re: What I'm trying now
Post by nani on Oct 6^th, 2005, 6:25pm

Check your messages, Jackie. :)

Update:
Tuesday was tough. I had post-dose hits and shadows. Yesterday was 98% PF and today I only shadowed a little. There's a huge storm system parked over my head, LOL... so it should be much worse.
I've decided to "tough out" any hits for now. I have no O2 and I don't want to SPUT. (and I just can't get that Red Bull down, but I heard it may be bad for my heart, too.) I think I'll go back to shrooms if I have to dose again anytime soon, just to change things up a little. I figure the longer it's been since I've used psilocybin, the better it will work.
Am I right? LOL
hugs, nani

Title: Re: What I'm trying now
Post by unsolved1 on Oct 6^th, 2005, 7:09pm

Go Nani Go !! Woop the beast's ass !!

Best Wishes

Michael

Title: Re: What I'm trying now
Post by nani on Oct 6^th, 2005, 11:55pm

Thanks, ozzy, Chris and Michael. :)
I am determined to whoop it's ass. I will beat it down to a bloody pulp someday... or die trying. ;)
I've had enough. :)
~nani...who can get really MEAN when pushed too far. LOL

Title: Re: What I'm trying now
Post by Pinkfloyd on Oct 7^th, 2005, 12:21am

on 10/06/05 at 18:25:31, nani wrote:

I figure the longer it's been since I've used psilocybin, the better it will work.
Am I right? LOL
hugs, nani

For the most part, I would agree. In your case, at this point, I agree.

The only time I would disagree would be if you waited so long that the cycle regained a solid foothold, the shrooms might not "work" as well as if you'd used them sooner. But, in this scenario, its more a matter of the strength of the cluster cycle than the strength (read:effectiveness) of the psilocybin.

Let me try this analogy..( I love analogies LOL)
Most of us are old enough to remember the days of vinyl records and turntables.
Consider a cluster cycle as a turntable that has been turned on and has reached full speed (78 rpm for you really old people).
Consider your finger and the force it can apply, as psilocybin.
Press your finger down on the record and it will slow down. Press your finger down again (2nd dose) with an equal or even slightly less force as the first time, and it will stop completely.
If you allow the turntable to regain full speed and force, the 2nd applied pressure (dose) will only slow it down again and not stop it.

If you haven't applied pressure in a while, you have regained all your strength once again. (not using psilocybin for a while) If you once again have regained your full strength, and apply it to the already slowed turntable, chances of stopping it have increased....IMHO.

Hope that was semi-clear. ;;D

Now....some of you seem to be playing your records backwards and some seem to be scatched more than others (additional complications).....but those are analogies for another day ;)

Bobw

Title: Re: What I'm trying now
Post by rextangle on Oct 7^th, 2005, 7:35pm

Here's Bob explaining his theory! ;)

http://www.djceffy.de/scratching.gif

and me trying to understand.... LOL
http://www.mrpomerantz.dsl.pipex.com/ape%20scratching.gif

Title: Re: What I'm trying now
Post by Pinkfloyd on Oct 7^th, 2005, 8:17pm

on 10/07/05 at 19:35:08, rextangle wrote:

Here's Bob explaining his theory! ;)

http://i23.photobucket.com/albums/b392/psiloscribe/_randomlaugh__by_darkmoon3636.gif

Quite playing that platter backwards looking for hidden meanings.....Paul is dead!!!
http://i23.photobucket.com/albums/b392/psiloscribe/sherlock.gif

Title: Re: What I'm trying now
Post by nani on Oct 20^th, 2005, 12:15am

Update:

As some of you know, I've had a rather stressful 5 days. I did get hit once each on Friday and Saturday. Both hits were at a time when I was able to sit still after very stressful stimuli. Both hits were about k8s and both were effectively aborted within 10 minutes with SPUTS.
I've had some shadows, some pretty heavy, but nothing to write home about. I've also had very clear PF periods. So, I'm waiting...
should activity return on a regular basis, I will dose. Otherwise, I'm still pretty good. :)

Title: Re: What I'm trying now
Post by rextangle on Oct 20^th, 2005, 12:36am

You are such a trooper Nani, as always, and welcome back! ;)
Rex

Title: Re: What I'm trying now
Post by nani on Oct 25^th, 2005, 7:42am

Update:

I got hit twice more since Wed. One aborted quickly with a SPUT. One not aborted. For the last 3 days, I've had several "false starts". I feel a hit coming, very quickly, and very painfully, but it goes away in about 3 - 5 minutes. I've had no autonomic symptoms during the hits or false starts, except for a slightly droopy eye.
I will probably dose again this weekend, since the activity is pretty regular.

Title: Re: What I'm trying now
Post by E-Double on Oct 25^th, 2005, 7:55am

Good luck my friend! :-*

Title: Re: What I'm trying now
Post by Sandy_C on Oct 25^th, 2005, 8:19am

Hi, Nani.

It's not surprising to me that you are getting hit after the last several days that you have had. I hope things will settle down soon, and that your treatments kick back in and work for you.

Hold on! [smiley=hug.gif] [smiley=hug.gif]

Sandy

Title: Re: What I'm trying now
Post by ozzy on Oct 25^th, 2005, 9:02am

That's generally the case with me, after stress, I get hit. So as Bob G says (paraphrasing) Stay stressed!!

I'm glad this is working for you.

Ozzy

Title: Re: What I'm trying now
Post by nani on Oct 25^th, 2005, 10:56pm

Staying stressed is easy, ozzy. LOL
I should note that it's been 30 days since my last dose of 5 HBWR seeds. Not bad. Not bad at all. :)

Title: Re: What I'm trying now
Post by nani on Oct 30^th, 2005, 8:05pm

Well, it's been 35 days since my last HBWR dose. I've been getting hit some again and have been experiencing regular shadows. This morning I dosed with 1 gm psilocybin tea with lemon juice. I chose psilocybin because I wanted to "shake things up" a little. I used a small dose because I consider this more of a maintenance (and not a "busting" ) dose and I haven't been in the optimal emotional state for the past few weeks.
As usual I had a trip level of about zero. I had some painful twinges along the trigeminal nerve from my nose to my ear and teeth, but no hits yet.
I'll keep you posted...
hugs, nani

Title: Re: What I'm trying now
Post by unsolved1 on Oct 30^th, 2005, 8:15pm

Keep up the fight Nani ! [smiley=headbanger.gif]

UNsolved

Title: Re: What I'm trying now
Post by rextangle on Oct 30^th, 2005, 8:44pm

I'm right behind you Nani!!! ;)
Let's race to the PF finish line!! :D
Rex

Title: Re: What I'm trying now
Post by Chillrmn1 on Oct 31^st, 2005, 5:49am

Rex and Nani,
PF wishes to you both!

Title: Re: What I'm trying now
Post by nani on Nov 6^th, 2005, 10:49pm

Good to hear you're getting a break, rexie. :)

I shadowed pretty heavily from Sunday through Thursday of last week. I started getting hit again on Friday. Today I dosed with 11 RC (rivea corymbosa) seeds soaked in water for 3 hours. Had my usual trip level of zero, LOL and have had no post dose hits or shadows.
My eye twitch (which had pretty much disappeared since August) was back in full force yesterday and today, but it hasn't twitched at all since dosing.
My head feels very clear tonight. :)

Title: Re: What I'm trying now
Post by LeeS on Nov 7^th, 2005, 10:26am

Great news nani. I too am still PF following my last RC seed dose (15 seeds).

Keep battling.

-Lee

Title: Re: What I'm trying now
Post by Beastfodder on Nov 7^th, 2005, 11:11am

Great to see things working - you know back in nov 2004 when I first posted here, yours was the first message of support.

Thanks for that - and here's to lots more pfdans

Title: Re: What I'm trying now
Post by youngmichael on Nov 7^th, 2005, 5:05pm

Good luck to you Nani and Rex. I hope you stay PF.

My weekend:
After the most painful (kip 8 ) headache of this cycle on Sunday, I made the decision to aquire some psilocybin. The Naturopath avenue didn't seem to be working, so I had nothing else.

After talking to a few friends I got some. I didn't have a scale so I went by what my friend said was about 1/4 of a dose. I made a tea out of them and drank it down. A headache was just starting when I dosed, but it kinda turned into a dull feeling after a while. I deffinately felt the effects of the stuff, so I have a feeling it was more than 1/4...but it wasn't unpleasant. After about 4 hours the effects wore off, and I didn't get a HA for the rest of the day, but I had that dull feeling in the spot where I get them.

This morning I woke up and felt fine, but at about 11:00AM(my usual HA time) I had a kip 4 or so. It lasted for about 45 minutes and slowly went away. That is totally normal for me. I have no idea what next week or so will be like, but I'm praying for PFD.

Title: Re: What I'm trying now
Post by rextangle on Nov 7^th, 2005, 5:24pm

Good news Michael.... keep up the good fight!
Rex

Title: Re: What I'm trying now
Post by Sandy_C on Nov 7^th, 2005, 7:42pm

Keep it up you guys, and keep telling us what you are doing, because next cycle, I'm gonna be asking questions about how much, how often, etc. I'm not going to go through another 5 months of agony again if I can help it. I'm reading, copy/pasting and saving every little tidbit I can find here.

Sandy

Title: Re: What I'm trying now
Post by Beastfodder on Nov 11^th, 2005, 6:10am

This is great to see - Clusterheads fighting back and winning.

When I joined last year the support was fantastic - now the mood's much more upbeat about winning battles (you can guess I'm an Autumn episodic from that remark).

It's been a good year topped by a great week - no headaches and not even that eye twitch. Shrooms and O2 bless you both.

Title: Re: What I'm trying now
Post by TXheadbanger on Nov 11^th, 2005, 10:15pm

Here is a link for non-carbonated redbull.. hope it helps

www.redbull-canada.ca/aboutus.html

Title: Re: What I'm trying now
Post by youngmichael on Nov 14^th, 2005, 2:53pm

I didn't really notice too much of an improvement with my headaches over the last week after my first dose of mushrooms, so I took a bigger dose over the weekend. Is that a bad idea? Should I be sticking with small doses?

After the initial dose I did notice a few changes in my headaches. I always get them right sided...a few days after I took them I had a bit of stabbing pain in my left temple. Anyone else experience this?

Title: Re: What I'm trying now
Post by rextangle on Nov 14^th, 2005, 3:37pm

on 11/14/05 at 14:53:18, youngmichael wrote:

The bigger the dose, the bigger the headaches will be the few following days. I used to have the same kind of logic, but it doesn't work that way. Stick to small doses, and increase by 0.5 g if unsuccessful.
I did 7g of dried once, thinking it would make a bigger impact.... I did get relief eventually, but the few following days were hellish, getting hit very hard and very often

They do switch every once a while for some of us. It's a sign that you've disturbed things up there.

Good luck to you and keep us posted.

Rex

Title: Re: What I'm trying now
Post by ArCane on Nov 15^th, 2005, 2:46pm

on 11/14/05 at 14:53:18, youngmichael wrote:

In my personal experience, I found little releif with small doses. I actually have to get to the "tripping" stage in order to find relief. Many people are different and react differently to things. You might want to try upping the dose to see if you get more releif. Try to take the smallest dose possible for the maximum releif though. Try to find out how much it takes for you and stick with that. Wish you the best.

Title: Re: What I'm trying now
Post by vig on Nov 15^th, 2005, 8:24pm

the potency varies pretty wildly too.
.5g of one doesn't always equate to .5g of something else.... the age and how it was handled has a big effect too.

It seems we each have to find our own right dosage.
The size of the person matters too.
LindaH would have a different dose than Big Dan...
;;D

Title: Re: What I'm trying now
Post by bnfreeman on Nov 15^th, 2005, 11:54pm

Best wishes to all of you! I will be reading for results.

Brandi

Title: Re: What I'm trying now
Post by nani on Nov 23^rd, 2005, 9:25pm

Quick update:
About 12 days after my last RC dose, I started getting hit again. On day 14 (Saturday) I dosed on 23 RC seeds, soaked in water for 4 hours. I had one post dose hit later that night (about a 15 minute k6). The next 3 days were extremely stressful. I have only had pretty mild shadows. On Monday I shadowed for about an hour and a half, and used a SPUT. It kept me PF for the rest of the day. I'm still shadowing a bit. Very easy, very short shadows. I consider this last dose a success so far. :)
PF wishes to all! nani

Title: Re: What I'm trying now
Post by nani on Dec 9^th, 2005, 7:59am

UPDATE:
It's been almost 3 weeks since my last RC dose. I have been about 95% PF. A few very easy shadows and maybe 3 hits altogether. The hits were VERY short lived. An average of about 3 minutes each. If things stay the same, I will dose at 30 days (another week) just as a maintenance thing.
:) hugs, nani

Title: Re: What I'm trying now
Post by Chillrmn1 on Dec 9^th, 2005, 8:11am

That's a great update Nani! :D So glad you're seeing good PF results.

Hugs,
Bob

Title: Re: What I'm trying now
Post by ArCane on Dec 9^th, 2005, 10:39am

WTG nani!! Thats great news. Im soooo happy for you. May your success continue.

Allen

Title: Re: What I'm trying now
Post by MJ on Dec 9^th, 2005, 11:05am

Nani.
I have learned from you.

I want to be like you. well not totally like you. just CH wise. I am very happy for you. Its the coolest thing of all when you forget what a bad hit feels like. Untill it returns.

I chose the RC seeds because it seemed like the most convenient of all.

Now.
Since you have tried the different hallucinogenics in near term dosing.

Did you personally find any difference in how the Pcylocibin vs HBWR vs RC seeds work or affect you regarding CH?

Any differences in the feelings other than CH related?

I have read and reread your summaries, This time I left out all the other inputs, occasionally you seem to alternate/mix the "meds" a little or am I not reading right? If so would you care to expand on this?

MJ

Title: Re: What I'm trying now
Post by E-Double on Dec 9^th, 2005, 11:17am

So good to hear! :-*

Title: Re: What I'm trying now
Post by nani on Dec 9^th, 2005, 11:21am

Thanks guys! :-*
MJ, since I began "busting" In July, I've used the following:

a one gram psilocybin dose
a one and a half gram psilocybin dose
3 HBWR seeds
6 HBWR seeds
4 HBWR seeds
5 HBWR seeds
a one gram psilocybin dose
11 RC seeds
23 RC seeds

I haven't experienced any "trippy" or even "buzzed" effects from ANY of the treatments. I believe I am freakishly immune, LOL
6 HBWR seeds caused my chest and left arm to feel uncomfortable, and since I'm a heart attack risk, I decided to switch to RC. I threw in a psilocybin dose in October, just to "shake things up". I believe that "my" beast is a "morpher", in that no matter how effective a med or treatment becomes, it breaks through and makes the meds worthless. I like the idea of shaking it up, just to keep the beast "off kilter". So far, it seems to be working quite well. :)

Title: Re: What I'm trying now
Post by MJ on Dec 9^th, 2005, 11:44am

Nani

Just to clarify.
The CH results were the same regardless of the product or method of delivery, HBWR/RC/Pcylosin. True?

Understanding the non CH side effects.

MJ

Title: Re: What I'm trying now
Post by nani on Dec 9^th, 2005, 2:53pm

Doh! I think I meant to answer that before, LOL...

I found that each of the treatments had a positive effect on my CH activity each time I used them. A 5 year chronic cycle was broken after 2 psilocybin and a few HBWR doses. 35 consecutive (and med/ treatment free)PF days is my record so far, so I'll be sure to maintenance dose at 30 days. I'm learning as I go, I guess. :)

Title: Re: What I'm trying now
Post by nani on Dec 17^th, 2005, 2:16pm

Update:
Last night I took a maintenance dose of 11 RC seeds soaked in water for 4 hours. It's been 30 days and 95% PF since my last dose of 23 seeds.
Zero trip level or effects.
Light shadows last night and this morning.
Clear headed and PF since.
:)

Title: Re: What I'm trying now
Post by Melissa on Dec 17^th, 2005, 2:47pm

on 12/17/05 at 14:16:47, nani wrote:

WOOOOOOOOOOOHOOOOOOOOOOOTIN NANI!!!!!! ;)

;;D ;;D ;;D

Title: Re: What I'm trying now
Post by nani on Jan 1^st, 2006, 1:33pm

Update:

After my last dose, shadows and hits continued to increase. I got my ass kicked all day on Christmas day. It then occurred to me that I'd started taking Zyban (Wellbutrin) a few weeks prior to help me quit smoking. [smiley=ohjez.gif]

By the 27th, the hits and shadows were in full swing, my eye twitch started again and the 24/7 "presence" was back.

I stopped the Wellbutrin 5 days ago and dosed again last night. I've had 2 post dose hits and some shadowing today, but the twitch is gone and the presence is only noticeable when I'm actually having activity. The jury is still out as to whether the Wellbutrin interfered, but I'll keep y'all posted on any improvement (or, God forbid, lack of) in the coming days.

edited to add:
I dosed on 13 RC seeds soaked for 6 hours in water. I planned on using 25 seeds, but there was an unfortunate spill, resulting in only having 13 that could be retrieved. Those suckers are small! :-/ So, I soaked them a little longer.
Also wanted to add... I am LMAO at the ad ot the bottom of the page: Is she anorexic? LMAO...if only!

Title: Re: What I'm trying now
Post by BobG on Jan 1^st, 2006, 2:04pm

Quote:

the twitch is gone and the presence is only noticeable when I'm actually having activity

That's great news. Sure hope it gets even better soon.

I just noticed that there have been #4445 visits to this string and 10 pages long.

Ya started a something great! Waytago, nani! :D

Title: Re: What I'm trying now
Post by MJ on Jan 1^st, 2006, 2:06pm

Hi Nani.

Bummer about christmas, damn CH.
You need to have a re-celebration.

I suspect you are right on the wellbutrin, some of my reading has suggested that LSA and the wellbutrin type and anti addiction drugs work along the same pathways.

Another plus for reccomending detoxification before and during LSA/pscylosin treatments.

I hope you find this dosing, this time as good or better than the rest.

MJ

Title: Re: What I'm trying now
Post by nani on Jan 2^nd, 2006, 11:53pm

OK...I think I can say with some confidence that the Wellbutrin interfered with my maintenance dose. I've had no hits and only mild shadowing since yesterday morning. I'm already at about 80% PF and I feel that wonderful "empty" feeling most of the time. ;;D
I did have one odd headache today, which was not a cluster, but had some similarity. I walked out into the sun and it triggered pain in my eye on the cluster side. It lasted about an hour, but the pain level was very moderate, and it centered above my eye, behind my eyebrow. It was more like something pressing on it from outside and was not sharp or burning. It came on and left very quickly. I don't think I've ever had a HA like that before. Hmmm.
feeling hopeful again, nani