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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> RC seeds
(Message started by: Roxy on Jan 9th, 2006, 2:36pm)

Title: RC seeds
Post by Roxy on Jan 9th, 2006, 2:36pm
Well, this might be somewhat early for posting, but I'm going to do it anyway.

To understand how the seeds have made a difference, you first have to understand how my ch's are normally. I am chronic, and have since the day I woke up with these little babies. On a normal day I have from 6-8 clusters. On a good day, 4-5. During bad periods, anywhere from 12-18, or pretty much every hour. And I never.....ever miss a day.

I've tried damn near every treatment out there. Dosing worked better than anything, took me 9 days PF the first time, after that it helped some....but not much.

I took 4 RC seeds a week ago. Had one or two nasty clusters the next day, but 02 worked pretty fast (02's ability to kick my ch's has not been working great for the last few months).

The week after I took the seeds, I was down to maybe one or two hits during the day, and only one at night. The big thing was that 02 was kickin' ass again.

Took 8 seeds last Saturday, and since then I've only had three hits. One each night and one yesterday afternoon. 02 killed them within two minutes.

Don't know if this will continue....not going to worry about it. I'm just going to enjoy the hell out of this while it lasts.

Roxy 8)

I even had a really nice little cabernet last night without one twinge or twitch of the head. As a chronic...I can drink....but NOT red wine.

Title: Re: RC seeds
Post by Wendy on Jan 9th, 2006, 3:00pm
Did you say 4 RC seeds and 8? Hmmmm? Wow, good for you! Hope it continues.

Title: Re: RC seeds
Post by E-Double on Jan 9th, 2006, 4:11pm
;;D
Bring the hope and smiles!


Title: Re: RC seeds
Post by nani on Jan 9th, 2006, 6:33pm
YAY!!!

That's some powerful medicine in those little tiny seeds, huh?
WTG, Tracey...I hope it continues forever!

Title: Re: RC seeds
Post by Chillrmn1 on Jan 9th, 2006, 7:34pm
Great news Roxy, hope it continues forever.

Title: Re: RC seeds
Post by Pinkfloyd on Jan 10th, 2006, 1:06am
;;D

Title: Re: RC seeds
Post by MJ on Jan 10th, 2006, 1:34am

Great news Roxy.  :)

Something to be said for less is more here.

MJ

Title: Re: RC seeds
Post by Beastfodder on Jan 10th, 2006, 4:22am
Result

Title: Re: RC seeds
Post by zanychef on Jan 10th, 2006, 9:48am
;;D ;;D ;;D

Title: Re: RC seeds
Post by Roxy on Jan 10th, 2006, 11:22am
Thanks for the good wishes....much appreciated.

Bob...this is the damndest thing.  Can't believe it has made even a little bit of difference.

One small hit yesterday, and the usual last night.  But again, 02 worked really fast.  I even got off the 02 a little early last night.....and the remaining pain just kind of drifted off.

These seeds rock!

Title: Re: RC seeds
Post by Melissa on Jan 10th, 2006, 2:44pm
That fucken kicks ASS Tracey!!!! ;;D ;;D ;;D

[smiley=thumb.gif]

WooHoo!
:)mel

Title: Re: RC seeds
Post by SteveY on Jan 10th, 2006, 4:05pm
Can I ask a question here? Well two actually.

Firstly just read up that pregnant women shouldn't take LSA as it reduces the bloodflow to the uterus, yes I know I can't get pregnant and that I don't have a uterus, but will it affect my passion so to speak? :-)

Secondly, I'm on verapamil, do I have to stop it before starting with the seeds?

Thanks in anticipation.

Daft Englishman frightened of the droops  ::)

Steve

Title: Re: RC seeds
Post by Pinkfloyd on Jan 10th, 2006, 6:09pm

on 01/10/06 at 16:05:19, SteveY wrote:
I don't have a uterus, but will it affect my passion so to speak? :-)


The dose is so low that you probably won't notice any changes in that department. OTOH, when people DO take doses large enough that it might have an effect, "the droops" as you call it, are the opposite problem. I believe there is a petition going around by some of the supporters, to get us to increase the dose size and frequency ;-)

On the serious side, yes there are considerations that should be closely investigated by people that have existing conditions/problems with circulation, such as Reynaud's disease.
Anyone that has been told that ergotamines are contraindicated due to existing medical conditions, should be especially careful and discuss this with their doctors. These psychedelics are mild vasocontrictors, but not typically as potent as ergotamines. This though, should be considered along with all the other warnings.

<<Secondly, I'm on verapamil, do I have to stop it before starting with the seeds? >>

Yes, you should try to stop the verapamil. I don't believe it is necessarily a deal-breaker but I do believe that detoxing off current headache meds (whatever they may be) does help the process.

Bobw

Title: Re: RC seeds
Post by Jonny on Jan 10th, 2006, 6:39pm

on 01/10/06 at 18:09:28, Pinkfloyd wrote:
Yes, you should try to stop the verapamil. I don't believe it is necessarily a deal-breaker but I do believe that detoxing off current headache meds (whatever they may be) does help the process.
Bobw


Should he ask his doc if its ok to stop the verap cold turkey, Bob?  ;)

Title: Re: RC seeds
Post by pam s on Jan 10th, 2006, 7:49pm
Roxy, I am so thrilled for you -- I've been following your story for a long time, and it's wonderful to see you get some relief!

From one TX girl to another,

Pam


Title: Re: RC seeds
Post by E-Double on Jan 10th, 2006, 8:15pm

on 01/10/06 at 18:39:52, Jonny wrote:
Should he ask his doc if its ok to stop the verap cold turkey, Bob? ;)

I've been detoxing @ 40 mg per week since beginning December..........slow process.

Cheers again Roxy

Title: Re: RC seeds
Post by Pinkfloyd on Jan 10th, 2006, 8:19pm

on 01/10/06 at 18:39:52, Jonny wrote:
Should he ask his doc if its ok to stop the verap cold turkey, Bob? ;)


You are correct jonny and I appreciate you're pointing this out.
First of all, verapamil shouldn't be stopped cold turkey and I suggest that everyone discuss ALL considered changes in meds, with their doctors. Even if he doesn't want to discuss using LSA with the doc, discussing tapering off or stopping any meds, should be discussed with the doc.
Even if people think stopping one med is ok, it may effect other meds that a person might be on, or even might need to be on, for other purposes.

thanks again jonny,
Bobw

Title: Re: RC seeds
Post by Linda_Howell on Jan 10th, 2006, 9:21pm


Tracey, I am crying right now after reading this.  This so totally rocks and I am jumping up and down with happiness for you.    Linda

Title: Re: RC seeds
Post by Roxy on Jan 11th, 2006, 11:24am

on 01/10/06 at 21:21:58, Linda_Howell wrote:
Tracey, I am crying right now after reading this. This so totally rocks and I am jumping up and down with happiness for you. Linda


Linda,  if anyone understands....it is you.  How is your head doing?  I would love to see you try these seeds.  They're damn cheap and easy to do.  Sure wouldn't hurt to give them a shot.

I had one small hit yesterday afternoon.  But the biggie is.......I didn't get hit at all last night.  The last time I missed a night hit (without taking some type of triptan or drug that is) was when the doctor put me on Provigil.  Unfortunately, I couldn't keep taking that drug, but it was starting to work.  The drug also caused my heart to try to pound out of my chest.

NO REM  SLEEP HIT!!  THIS IS FUCKIN' AWESOME.

Roxy  8)

Title: Re: RC seeds
Post by SteveY on Jan 11th, 2006, 11:28am
Great news Tracey  :D

Title: Re: RC seeds
Post by Kevin_M on Jan 11th, 2006, 11:31am

on 01/11/06 at 11:24:11, Roxy wrote:
THIS IS FUCKIN' AWESOME.



:-*                         [smiley=hug.gif]


YES!




Title: Re: RC seeds
Post by Roxy on Jan 11th, 2006, 10:46pm
This may be stupid to keep posting.....but it's been another 9 hours.

NO HITS

Title: Re: RC seeds
Post by MJ on Jan 12th, 2006, 1:03am
Roxy

Its not stupid, it's Amazing.
Its your turn for a break sounds as though you deserve it very much

For those of us who have not found lasting or any relief in the past it gives a lot of hope.

9 hours may not sound like a long time to some but some of us are truly understanding when one gets a whole nights sleep or even 3 hrs worth. Then days off, WOW.
I didnt know wether to laugh or cry when I got some time off with the seeds which by the way are finally working for me as well. I allmost want to stand on the corner and shout about it.

MJ

Title: Re: RC seeds
Post by nani on Jan 12th, 2006, 11:36am

on 01/11/06 at 22:46:23, Roxy wrote:
This may be stupid to keep posting.....but it's been another 9 hours.

NO HITS



YAY!!!  ;;D There is absolutely nothing stupid about keep us all informed, Tracey. If it weren't for others doing just that, I may never have tried them myself. And, heaven knows, I'm so glad I did.  :)

Rock on, girl!

Title: Re: RC seeds
Post by Roxy on Jan 12th, 2006, 11:37am

on 01/12/06 at 01:03:27, MJ wrote:
I allmost want to stand on the corner and shout about it.


Boy, ain't that the truth.  Slept through the night like a baby, no twinges....no nothing.  My husband keeps looking at me like he's waiting for me to blow up or something.  We don't even talk about it yet.....he woke up this morning and just looked at me and said "WOW!".

Now I'm a little confused on whether I need to take the seeds again just for maintenance, or just let it be until I start getting hit again.  Hey Bob....any advice?

Roxy

BTW:  For those who know me, and know my massive triptan use.....this marks three weeks without one triptan (including the detox period).  At least I'm finally able to start stockpiling my meds.


Title: Re: RC seeds
Post by Pinkfloyd on Jan 12th, 2006, 12:48pm

on 01/12/06 at 11:37:54, Roxy wrote:
BTW: For those who know me, and know my massive triptan use.....this marks three weeks without one triptan (including the detox period).


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

Glaxo's recent stock price chart  ;;D

Bobw

Title: Re: RC seeds
Post by Pinkfloyd on Jan 12th, 2006, 1:07pm

on 01/12/06 at 11:37:54, Roxy wrote:
Now I'm a little confused on whether I need to take the seeds again just for maintenance, or just let it be until I start getting hit again. Hey Bob....any advice?


Well, I'm trying not to even breath too hard as to not upset anything LOL.

As to when to dose again, it's hard to tell this early but..remember that if you listen to your body, you will be the best judge. I wouldn't dose just to dose at this point. You've taken a couple doses and it may be all you need for a while. A maintenance dose before everything settles down real well might cause a little more activity. No need to do that if you don't need to.

If you feel more pressure building up in your head, I would be prepared to dose again. Take a minute every day and just "check your head"...sit back and quietly assess the clarity. I wouldn't do it too long as too much "mediation" is similar biofeedback and could just trigger something you don't want to happen...but just a quick check.
If you feel things might be taking a turn for he worse....dose again.
I think we all train ourselves to try our best to bury the pain and work through it, but in this case, I think its a good idea to try and be a little more aware of whats going on. Don't be afraid of it...step into the light ;-)

If you feel some twinges that leave you more clouded than before, be ready to dose.

Bobw


Title: Re: RC seeds
Post by Kevin_M on Jan 12th, 2006, 1:23pm

on 01/12/06 at 12:48:21, Pinkfloyd wrote:
Glaxo's recent stock price chart ;;D


Good one Bob.   ;;D

Roxy started this thread on Monday, the 9th.  It's been downhill for Glaxo since then.  

Title: Re: RC seeds
Post by Linda_Howell on Jan 12th, 2006, 2:39pm


No it doesn't Kevin.


Quote:
At least I'm finally able to start stockpiling my meds.
 She's still buying them...just not using them at the moment.   ;;D

Linda

Title: Re: RC seeds
Post by Pinkfloyd on Jan 12th, 2006, 3:33pm

on 01/12/06 at 14:39:39, Linda_Howell wrote:
No it doesn't Kevin.

She's still buying them...just not using them at the moment. ;;D

Linda


The stock market is always ahead of the curve. It's feuled by rumor and anticipated movements in a companies financial success/downturn. Wall Street usually knows a company is in trouble even before the company knows it's in trouble.
;;D

A chicken in every pot and an Oliliuhqui in every garden!

Bobw
(watch out Linda, we're coming for you next, sis ;-)

Title: Re: RC seeds
Post by vig on Jan 12th, 2006, 4:07pm

on 01/12/06 at 15:33:32, Pinkfloyd wrote:
(watch out Linda, we're coming for you next, sis ;-)


ha!
go get 'er Bob...
;;D

Title: Re: RC seeds
Post by Kevin_M on Jan 12th, 2006, 4:18pm

on 01/12/06 at 15:33:32, Pinkfloyd wrote:
The stock market is always ahead of the curve. It's feuled by rumor and anticipated movements in a companies financial success/downturn. Wall Street usually knows a company is in trouble even before the company knows it's in trouble.
;;D


High-margin product obsolescence?   ;)


we wish


Make it so, Bob.




Title: Re: RC seeds
Post by Melissa on Jan 12th, 2006, 4:47pm

on 01/12/06 at 15:33:32, Pinkfloyd wrote:
(watch out Linda, we're coming for you next, sis ;-)

:-X  *whistling*

nothing to see here!!!!

8)

Title: Re: RC seeds
Post by Roxy on Jan 12th, 2006, 7:20pm
OMG Bob....LOLOL.  I haven't laughed that hard in some time.  


on 01/12/06 at 13:07:02, Pinkfloyd wrote:
Well, I'm trying not to even breath too hard as to not upset anything LOL.


Boy, no kidding.  I just keep waiting for the shoe to drop.  


on 01/12/06 at 13:07:02, Pinkfloyd wrote:
Take a minute every day and just "check your head"...sit back and quietly assess the clarity. I wouldn't do it too long as too much "mediation" is similar biofeedback and could just trigger something you don't want to happen...but just a quick check.


I think that being chronic, I always have a low level head check going without even being aware that I am.  I've had a few shadows, but they go away by themselves.  Other than that.....my head is staying exceptionally clear.

Linda.....we're all going to be after your ass on this one..... ;;D.

Roxy

Title: Re: RC seeds
Post by Roxy on Jan 13th, 2006, 12:42pm
Well, it was nice while it lasted.  Head went off like fireworks last night.  02 kept them all from escalating, but it was hitting about every 45 minutes to an hour.

I didn't have any seeds soaking, so I went ahead and dosed with shrooms.  

Maybe mixing it all up will help, or maybe I just need to do the seeds every five days.

Roxy

Title: Re: RC seeds
Post by LeLimey on Jan 13th, 2006, 12:49pm
Good luck Roxy, I can't wait to hear how it turns out for you.
I'm dosing with RC seeds tonight so keep your fingers crossed for me please!

Title: Re: RC seeds
Post by pattik on Jan 13th, 2006, 1:09pm
Major finger-crossing for you....I'll be following in your footsteps when my time arrives.  Luck and hugs.

Title: Re: RC seeds
Post by godsjoy777 on Jan 21st, 2006, 7:33am
Hey there....I'm watching too.....The time is approaching for the usual next cycle to begin and I had a scary shadow the other night...I am cyclic and rarely even shadow during my off times....The O2 took care of it but the forboding has arrived....

What about Zonegran.....I've brought my dossage waaaaay down as I have been out of cycle....It's down to 100 mgs......Will that be a problem if I try to do any seeds in the near future????

Love you all,
Karen



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