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        Cluster Headache Help and Support >> Cluster Headache Specific >> Alternative
        
(Message started by: Redd on Apr 28th, 2007, 10:53am)
Title: Alternative
Post by Redd on Apr 28th, 2007, 10:53am
I've broken my last PF record...

Today will be a full 36 days without a full blown Hit.  I'm in the middle of what should be my "high cycle" still, as I still shadow, the left nostril will run on a clock work schedule, and I have the wake up calls at night, but they are PF.  

My stratagy started out with weekly doses of RC seeds (25 seeds) for three weeks, with the 4th week being a very mild dose of shroom tea as a booster starting the second week of March when activity shot back up.  During the month of March I had a total of 5 high (8-9) Kips during the first week, 3 during the second week, and 1 kip 6 the Tuesday morning of week 3 and then nothing but various levels of shadows.  

I have since cut back to doses of RC seeds (25 seeds) every other week, and mixed between them, one very mild shroom tea.  I've taken a vacation day Monday to strike a final blow to the beast with a stronger tea.  

I've had a few stress related moderate migraines the last two weeks since my last dose of seeds, that have lasted days...the stress is work related.  My hope is that Monday's booster shot will put an end to this CH high cycle and take care of the migraines as well.

Over all it's been the easiest high cycle since being Dx, not a single lost day of work, and only one hit during work hours that Tuesday Morning.

I am not comfortable saying I'm no longer chronic, when all other symptoms are present of a cycle, but rather I assess the situation as having effectivly found a way to "block" the pain while still being in cycle.  
Title: Re: Alternative
Post by Brewcrew on Apr 28th, 2007, 10:58am
Wow! This is outstanding news, Pegg! Keep goin'!
Title: Re: Alternative
Post by andrewjb on Apr 28th, 2007, 11:37am
[smiley=thumb.gif], great news. long may it last. andrew.
Title: Re: Alternative
Post by Chillrmn1 on Apr 28th, 2007, 3:53pm
Really great news! Glad for you Pegg.
Title: Re: Alternative
Post by BB on Apr 28th, 2007, 5:47pm

Thats fantastic Redd  :)

Hopefully it will keep working and keep the beast away for good for you.  :-*

Is this the first time you dose?


Annette
Title: Re: Alternative
Post by ClusterChuck on Apr 28th, 2007, 8:10pm
WOOHOO, Pegg!!!

That is OUTFUCKINSTANDING!!!!!

You REALLY deserve this break, hun!!!  I hope it lasts forever, now!

Chuck
Title: Re: Alternative
Post by barry_sword on Apr 28th, 2007, 8:37pm
[smiley=sayyes.gif]

Such good news!


 Barry
Title: Re: Alternative
Post by Redd on Apr 28th, 2007, 9:53pm

on 04/28/07 at 17:47:44, BB wrote:
Thats fantastic Redd  :)



Is this the first time you dose?


Annette


I've been busting for 2 years now.  I am however a long time chronic, so it's taken alot of dilligent work to get this far.  

I'm not comfortable with larger doses, which may work better, as I have no "babysitter" (if you've read much of the CB site).  

It's also been observed that chronics are harder to treat even with this route.  I would want to add that in my opinion the length of being chronic may also play a role.  I was chronic for 20+ years, but misdiagnosed.

My chicken-shite approach has probably bought me more pain than I would otherwise have had, but as I mentioned I don't have a babysitter, and I've had to dose at very low levels with my kids home.  I won't subject them to an impaired Mother.  The beast is one thing..

If nothing...I'm stubborn...and persistant.   It's paying off.  Now if I should find a good baby sitter in the meantime...you can bet I'd hit the f*cker with something harder...but alone I just can't and won't chance it.
Title: Re: Alternative
Post by sailpappy on Apr 28th, 2007, 10:28pm
;;D ;;D  I have to give all you Cluster Busters my deepest respect, I have faced so many disappointing approaches to this chronic inigma, that I just don't have the Courage to try this approach, yet?
       Facing the Deep Brain Stimulation as an alternative just might boost the desire to try any approach other than surgery of any kind, especially Brain,  dont know if they would be able to locate one in my case!
                     Kudo's for you Sis!   John


http://home.comcast.net/~jhallahan2/wsb/media/299782/site1285.gifhttp://home.comcast.net/~jhallahan2/wsb/media/299782/site1285.gifhttp://home.comcast.net/~jhallahan2/wsb/media/299782/site1285.gifhttp://home.comcast.net/~jhallahan2/wsb/media/299782/site1285.gifhttp://home.comcast.net/~jhallahan2/wsb/media/299782/site1285.gifhttp://home.comcast.net/~jhallahan2/wsb/media/299782/site1285.gif
Title: Re: Alternative
Post by BMoneeTheMoneeMan on Apr 28th, 2007, 11:30pm
Thats really great Pegg.  I am so happy for you.

I think I am going to dose tomorrow.  I should have 2 weeks ago, but finding time is hard.

Can you tell me, do the RC seeds impair you?  Do you get 'high'?  I have never done them before, but i have some and might do them as a follow up to tomorrow's dose.

Thanks, and congrats on the PF time.  At this rate, we are going to have to promote you to supporter.

B$
Title: Re: Alternative
Post by Redd on Apr 28th, 2007, 11:30pm
Pappy...my dear...

I can't make any choices for you I can only give my own personal experience.  Surgery wasn't ever an option for me as I was newly Dx, only a bit over 3 years ago, but with no insurance, and pocketing all costs, I had to find some way out of the hell I was enduring.  

The last cocktail I was on was Verap and topomax with obviously limited access to trex injections, with marginal improvement in frequency and intesity of attacks, but marked derioration of my mental functions.  It wasn't 9at the time) the CH that had my job in jeapordy but my inability to function mentaly.  Dopymax was NOT my friend in the workplace.  

Only you can say what is right for you.  But if I had all options available to me..I'd still have chosen this way.  As I said I'm stubborn, and I survived believing the misdiagnosises for many years, survived after knowing there is no "cure" and survived when all hope seemed lost.   I knew I could yet survive while I gave a different approach to what could be a path to a pain free life.

Although a gaurded and "slow" approach...I've seem makerked improvement.  Over two years the PF time has been getting longer and longer, and my knowlege of how my body is responding is getting better.  I'm becomming more aware of (for lack of a better term, precursor,) symptoms prior to getting into a full blown whirlwind.  Thats a step or ten in the right direction.  I'm not "there" yet, at least not by my measure.  When I get "there" I'll certainly let everyone know. should it happen.  But for now this is the best it's been in a long time, and I'm not going to say it won't get worse again, it certainly could.  But....I've seen progress more than any other traditional method thus far.
Title: Re: Alternative
Post by BB on Apr 29th, 2007, 1:29am

Thanks Peg,

So with your method, you dose with lower dosage but more frequent and you persist for longer?

How many times over the 2 years period that you have used shrooms or RC seeds? does the effect of each dosing get stronger with time ?

Has it affect your mood in any way?

Thanks for the information.

I am so glad it has worked well for you  :)


Annette
Title: Re: Alternative
Post by sandie99 on Apr 30th, 2007, 2:46am
Pegg,
that's just fantastic!!!!! :) ;;D :) ;;D :)
I'm so happy for you!

Wishing lots of PF time,
Sanna
Title: Re: Alternative
Post by Sandy_C on Apr 30th, 2007, 2:49pm
Oh, Pegg, that's great news!  I'm so happy you are finding relief with the seeds and your "tea".  Sounds like you have found a combination that is working for you.  Fantastic!

I swear by rc seeds, and will be dosing again tonight.  My last dose was 21 days ago, but for the last two nights, I've had some pretty heavy shadowing at my usual "witching hour", so it's 30 seeds for me tonight.  

B$ - I can't speak for anyone else, but no, I've never gotten I would call high, even with 30 seeds.  The most I have ever felt was a little "floaty" and that happened only once when I opened a new batch of seeds.  Usually I just feel very calm and serene - altogether, quite pleasant - and, I sleep like a baby.

Sandy
Title: Re: Alternative
Post by Redd on Apr 30th, 2007, 3:24pm
My mantainance dose of tea today, while stonger than my usual doses, brought some mild but pleasant color visual patterns and a "deeper" perception of the sounds and sights of the wildlife.  Seeds have never done more than as Sandy mentioned, a serene and calm frame of mind, slighty frisky.   :-/ Oh well.

No post dose hits, and with the time having passed and senses are totally clear feeling very good indeed.  

There are even storms just a few miles to the south, and that has always been a major trigger for me, but I feel nothing but a bit of stuffed up sinuses, but that could easily be due to the spring allergens that are abounding right now.  
Title: Re: Alternative
Post by Guiseppi on Apr 30th, 2007, 3:36pm
Redd I'm so happy for you. I retire in 2010 and will be looking at the alternative options then. I get so excited when I see posts like yours on how well they work! Lord knows you were overdue for a break! Go play with your kids with a smile on your face and NEITHER eye drooping!!!!

Guiseppi
Title: Re: Alternative
Post by Rosybabe on Apr 30th, 2007, 4:05pm

Good for you Redd!!  [smiley=thumb.gif]
Title: Re: Alternative
Post by Redd on Apr 30th, 2007, 4:16pm

on 04/29/07 at 01:29:31, BB wrote:
Thanks Peg,

So with your method, you dose with lower dosage but more frequent and you persist for longer?  

That is correct


How many times over the 2 years period that you have used shrooms or RC seeds? does the effect of each dosing get stronger with time ?

I don't document the CH or anything anymore, so I couldn't give you a count of "how many times".  I stopped keeping a HA diary a long time ago.  To much focus on the negative in my opinion by writing everything down.  The PF times does get longer over all with each dose, but there are times of backward movement when either a missed dose, or a high activity cycle pops up, and then it takes some extra dilligence to get the beast back in his cave.

Has it affect your mood in any way?

Overall, my "mood" have been more positive as I'm enjoying the PF time and have a better overall quality of life.  So the answer is YES it has, and for the better.  There are many other busters that can attest to the fact that I really struggled with making this decision back at the time.  But I'm now very happy that I did.

Thanks for the information.

I am so glad it has worked well for you  :)


Annette
Title: Re: Alternative
Post by BB on Apr 30th, 2007, 6:04pm

Thank you very much Peg for your reply.  :-*

Its great to be able to hear the first hand experience of someone who has done it. It gives a much clearer picture.

Wishing you all the best and hope this will continue to work for you always.

Hugs

Annette
Title: Re: Alternative
Post by pieface_49 on Apr 30th, 2007, 10:30pm
Thank you for the post Peg(g?).  Chuck said it better than I can.  Your post will help me make some possible future decisions.  Even more importantly, it is nice to hear good news.  Puts a smile on my face :)

John,
    I can only sympathize with you.  I do not think I am chronic.  I know many have responded in other posts.  What I am posting is only what I have read.


Quote:
At present, among the five patients who were implanted and stimulated two are totally pain-free, one has relief with fewer than three attacks per month and one has had transient remissions; none of them is taking prophylactic medications. All patients improved within 2 weeks after the operation, but improvement was definitive in only two patients. One patient died shortly after implantation. The average follow-up time is 14.5 ± 1.5 months.

This refers to hypothalamic stimulation.
http://brain.oxfordjournals.org/cgi/content/full/128/4/940

I think this refers to the same study.
http://www.pslgroup.com/dg/25a456.htm

This study suggests 10 of 10 patients have been successfully treated with hypothalamic DBS.  There has to be something different in their technique?  Maybe someone can make clear what the difference in techniques are?

Quote:
All the patients experienced rigorous improvement in headache frequency after hypothalamic stimulation was initiated: eight of the investigated 10 patients were completely pain free and the remaining two suffered only from sporadic attacks. Notably, it takes several days, or even weeks, between turning the unipolar stimulator on or off and observing a change in the clinical picture (Franzini et al., 2003Go). None of the patients experienced any adverse side effects or headache symptoms during the scanning.

http://www.jneurosci.org/cgi/content/full/26/13/3589

Once again, I will post a recent study.  This study concerns ONS (Occipital Nerve Surgery):
http://www.medicinenet.com/script/main/art.asp?articlekey=79726

Donnie
Title: Re: Alternative
Post by ClusterChuck on May 1st, 2007, 12:43am

on 04/30/07 at 22:30:54, pieface_49 wrote:
I can only sympathize with you.  I do not think I am chronic.

Ya faker!!!  According to your OWN admissions, you haven't even been properly diagnosed, except by yourself.  Your recent examinations have refused to say you have cluster headaches.

Quit trying to put yourself as an expert.

You keep posting links, that many times are totally inappropriate, or inaccurate.  Hell, you have even posted a supposidly learned article from a guy that was trying to sell a phony "cure" ...

Go troll some other site, and quit trying to mislead those that don't know what an idiot you are.

Chuck
Title: Re: Alternative
Post by pieface_49 on May 2nd, 2007, 9:11pm

on 05/01/07 at 00:43:20, ClusterChuck wrote:
Ya faker!!!  According to your OWN admissions, you haven't even been properly diagnosed, except by yourself.  Your recent examinations have refused to say you have cluster headaches.


Chuck, I really do not know what to say. You must go to bed with me in mind? I would think you know the analogy, "living in someones mind rent free"? What is really sad is you have no idea what my medical history is! If I let you bother me from the beginning, I would have left a long time ago. I have not left because this insidious illness has taken a major toll on my life. How the hell you can tell someone they do not have an illness is beyond me. I will admit I am not 100% positive I have CH. That answer will come when the next cycle comes. Somehow I managed to get a script for O2, Imitrex and Verap?


Quote:
Quit trying to put yourself as an expert.


There is an almost obsessive desire to learn and understand what is wrong and what I can do about it. For 4 years I took all the wrong medication and received absolutely no help from the medication nor the Doctors. For 4 years the suffering has taken me to a place I never want to be again. It is imperative (suicidal thoughts during bad episodes) I learn all I can. I am just a person trying to stop that from happening and live a so called "normal" life.


Quote:
You keep posting links, that many times are totally inappropriate, or inaccurate.  Hell, you have even posted a supposidly learned article from a guy that was trying to sell a phony "cure" ...


I make mistakes and admit I made a big one by attempting to be funny in another post. It was really STUPID to say I would rather suck on a lidocaine patch rather than pasting it on my forehead during an episode. The article about the capsaicin spray seemed sincere. I apologized for not recognizing the author had something to do with "Sinus Buster" which was only listed at the end of the lengthy article. My point is that no matter how trivial something might be, you will pick it out and blast me. If I have done something to you personally, I can understand your having a hardon (no pun intended) for me. Even here, you have something to say. Oh, I forgot, you poot.
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=general;action=display;num=1177162554

Here I simply ask if anyone has experienced fuzzy vision and off to the races you go.
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;action=display;num=1176560018

There are many, many other instances. Not going to waste any more time than I already have. All the above said, I do thank you for some guidance you have given me.

Donnie
Title: Re: Alternative
Post by ClusterChuck on May 2nd, 2007, 9:41pm

on 05/02/07 at 21:11:36, pieface_49 wrote:
What is really sad is you have no idea what my medical history is!

You're absolutely right!  I can only go with what you have told us, and that keeps changing from post to post!



on 05/02/07 at 21:11:36, pieface_49 wrote:
I would have left a long time ago.

Don't let the door hit you, on the way out.



on 05/02/07 at 21:11:36, pieface_49 wrote:
I will admit I am not 100% positive I have CH.

FINALLY an intelligent statement!



on 05/02/07 at 21:11:36, pieface_49 wrote:
Somehow I managed to get a script for O2, Imitrex and Verap?

Not at all surprising.  MANY times doctors prescribe the wrong thing.  They are not perfect.



on 05/02/07 at 21:11:36, pieface_49 wrote:
If I have done something to you personally, I can understand your having a hardon (no pun intended) for me.

What you have done is changed your story so many times, we don't know what is true anymore.  The BIGGEST problem that I have with you, is you may be influencing some new people, and leading them down the wrong path!  THAT is what is so dangerous about your posts.

I am sorry you have pain (supposidly).  Pain of any type sucks.  BUT, before proper treatment can be given, proper diagnosis, BY PROFESSIONALS must be done.  That has not happened to you, by your own admission.

Find out what is truely wrong with you, before putting yourself as an expert.

Chuck
Title: Re: Alternative
Post by Redd on May 3rd, 2007, 7:01pm
41 days....

still counting... ;;D
Title: Re: Alternative
Post by Erika on May 3rd, 2007, 10:19pm
ok - I hate to sound stupid and perhaps I already read the answer and it got scrambled by the overwhelming amount of information on here, but.... what are RC seeds?  I have never heard of them.

Not that we are going to try this approach yet, I am just curious.
Title: Re: Alternative
Post by Rosybabe on May 3rd, 2007, 10:33pm
Rc seeds check them out at clusterbusters.com, they have information about alternative treatments
Title: Re: Alternative
Post by ClusterChuck on May 3rd, 2007, 10:48pm

on 05/03/07 at 19:01:27, Redd wrote:
41 days....

still counting... ;;D


WOOHOO!!!

I am SO happy for you, dear!

Chuck
Title: Re: Alternative
Post by Pinkfloyd on May 3rd, 2007, 11:16pm
Very happy to hear things are going so well.

keep on keepin on!!

Bobw
Title: Re: Alternative
Post by Flounder on May 4th, 2007, 11:28am
That's Awesome Pegg!!!!!!!!!!!
Keep up the good work ;)



42?
Title: Re: Alternative
Post by LeeS on May 4th, 2007, 11:58am
Great stuff Pegg - long may it continue 8)

How you doing TommyD?

-Lee
Title: Re: Alternative
Post by Redd on May 4th, 2007, 12:41pm

on 05/04/07 at 11:28:34, Flounder wrote:
That's Awesome Pegg!!!!!!!!!!!
Keep up the good work ;)



42?


Yep  42

But another migraine started about an hour ago.  This place is just way too stressful.

Hey anyone looking for a seasoned sales Rep?   ;;D
Title: Re: Alternative
Post by tommyD on May 4th, 2007, 4:47pm

Quote:
Great stuff Pegg - long may it continue
How you doing TommyD?


Congrats, Pegg. Great to see  chronic get a break.

Me,  I had a couple mild hits since I took that one dose of seeds three weeks ago: one hit last Sunday and one Wewdnesday.  Both were 20 minutes of K-3 followed by 20 min of K-5 , followed by another 20 min of K-3. Shadows have been building this week so I plan to dose this weekend. Maybe right now, seeing as it’s Friday afternoon.

It’s almost embarrassing, to be talking about a little bit of K-5 as if it were some kind of significant cluster pain, but that’s how it’s been for me for a long time now. I’m not cured, but I’m starting to forget what the Beast can be like.

Without the shrooms and seeds,  I would be having one to two hits a day in the K 6 to 7 range with an eight thrown as a special treat on rare occasions -- that’s assuming my case would not have worsened since I first tried the shrooms almost six years ago. Using hallucinogens, I have had maybe 2 or three  K-7s, and less than a dozen K-6’s since July of 2001.

I have some seed slurry in the freezer. Think I’ll thaw it out and slug it down.

-tommyD
Title: Re: Alternative
Post by nani on May 4th, 2007, 6:00pm
http://forums.offtopic.com/images/smilies/hsdance.gif?SSImageQuality=Full


YAY!!!!

I'm so happy for you, Pegg! I found that once I broke that chronic cycle, staying PF gets easier. Keep it up, girl.  :)
Title: Re: Alternative
Post by pattik on May 4th, 2007, 6:47pm
Outstanding news, Pegg! ;;D


Quote:
I have some seed slurry in the freezer. Think I’ll thaw it out and slug it down.  


Bon Appetit, Tommy.  I hope you find it well preserved and as effective as the fresh version.
Title: Re: Alternative
Post by johnnypatrick on May 6th, 2007, 8:32pm
I'm new and need help. Hope someone has time to answer a newbie's questions. What are RC seeds? Why do you use them? Does not regular meds from a doc work? Are they better?
Also does www.sinusbuster.com  this work? I see it advertised on this board. I hope you can help. I'm looking for anything. I'll take cyanide if it will help.  
Title: Re: Alternative
Post by Rosybabe on May 6th, 2007, 8:55pm
Hi Johnny!

Welcome aboard  [smiley=wave.gif]

Others with a lot more knowledge on this matter will come later to help you.

In the meantime please check your PMs.

Best wishes for you!
Title: Re: Alternative
Post by tommyD on May 6th, 2007, 9:42pm
Welcome, johnnypatrick -

RC seeds are the seeds of the Rivea corymbosa, a flowering vine native to Mexico. They contain LSA or lysergic acid amide, a much-less potent cousin to LSD. It is legal to buy the seeds and grow the flowers, but it is illegal to eat the seeds, even for those nasty cluster headaches.

LSA and related substances - psilocybin and the afore mentioned LSD, seem to be very effective in ending entire cycles of cluster attacks.  Tripping is not required. See:
http://www.clusterbusters.com/
and
http://www.clusterbusters.com/faqlsa.htm

As far as SinusBuster goes, effectiveness seems to be limited. Versions of this capsaicin nasal spray were tested a few years back by a major pharmaceutical company, and found not effective enough to be marketable. The advertisements at the bottom of the page are not necessarily controlled or endorsed by the owner of the board or anyone here.

-tommyD
Title: Re: Alternative
Post by chrisw on May 7th, 2007, 10:46am
Pegg,

that is awesommme!!!  aint life grand sometimes?

chrisw
Title: Re: Alternative
Post by ClusterChris on May 7th, 2007, 12:33pm
congrats red!! :o
Title: Re: Alternative
Post by Redd on May 10th, 2007, 3:29pm
48 DAYS......

A few shadows from time to time.  Some that worried me in the past week, but they never amounted to more than that.

One more day until the weekend....
Title: Re: Alternative
Post by Redd on May 24th, 2007, 9:45am
62 days

I made a decision to NOT take my routine dose 2 weeks ago, and........

I think I've actually gone into

REMISSION

No shadows, no pressure.  No nothing.  

I don't plan on going anywhere, I'm sticking around to offer my support to everyone.  
Title: Re: Alternative
Post by midwestbeth on May 24th, 2007, 10:15am
Thats just fantastic Pegg!!!!  I am so happy for you  ;;D

Beth
Title: Re: Alternative
Post by Chillrmn1 on May 24th, 2007, 9:01pm
Great news Pegg, keep it going!
Title: Re: Alternative
Post by UN solved on May 24th, 2007, 10:41pm
Congrats Pegg ! Sounds like you're doing pretty darn good ! I hope your PF time lasts forever !

Best Wishes

UNsolved
Title: Re: Alternative
Post by Redd on Jun 24th, 2007, 1:14pm
Another month has passed.  Some shadows have started up again, I did have one scare where a K3 hung on for about 4 hours at work, nose runny with burning sinus, and my scalp and face on the left side was burny and tingly like I was getting stung by thousands of microscopic bees.  It was quite warm that day, very humid and this has always been one of my triggers.

From time to time I feel that "nodule" just in front of my left ear.  Touch it and a sharp pain shoots into my ear and up to the outer corner of my eye. Hot humid weather is on the way again, and I'll dose again soon with a full 25 seed dose.  It's a month since my last very small dose of RC seeds.  (15 down from 25)
Title: Re: Alternative
Post by thebbz on Jun 24th, 2007, 10:49pm
Keep on truckin Redd. Still counting days?
jb
Title: Re: Alternative
Post by Redd on Sep 6th, 2007, 7:52pm
BUMP
Title: Re: Alternative
Post by MJ on Sep 7th, 2007, 2:23am
Cool beans Redd

Can I assume you have been mostly CH free for 5 months.

Awesome.
Title: Re: Alternative
Post by sandie99 on Sep 10th, 2007, 4:11am
Pegg,
I'm so glad that you found a treatment which works! :)

PF years,
Sanna
Title: Re: Alternative
Post by sue_g on Sep 10th, 2007, 5:25am
Yes, I have to ask as well.  Where to do buy these?  Just any information would be good.
Thanks


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