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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> RC seeds...early days but cautiously optimistic...
        
(Message started by: RayU on Oct 20^th, 2007, 5:28pm)

Title: RC seeds...early days but cautiously optimistic...
Post by RayU on Oct 20^th, 2007, 5:28pm

My cycle was due November/December.
Wanted to give seeds a try, managed to start with a dose of 12 at end of August with intention of doing this monthly...but never got to do this.
Got hit at beginning of this week on a longhaul flight so had to use injection. Since then been having 4-5 attacks a day, and used oxygen to abort. Last night was 5th day after Imitrex so dosed with 30 seeds. First full night's sleep in a week and slept like a baby through the night without any attacks. Just had first attack 20 hours after the seeds and only about a level 5 and didn't even bother with o2 - if only they could all be like that! Only reason I call it a cluster is because of the area and symptons - everything was there except the extreme pain!
Something has changed! frequency and intensity substantially reduced.. Have the seeds given the beast a kicking?
Let's hope so and wait and see how tonight and next few days go. Will dose again in 5 days and will keep you posted.
Any advice/comments/suggestions/similar experiences would be appreciated.

PFDAN to all.

Cheers,
Ray

PS - Just seen birdman Tim's post below and will follow that.

Title: Re: RC seeds...early days but cautiously optimisti
Post by ski2k on Oct 20^th, 2007, 5:44pm

[smiley=headbanger.gif] [smiley=headbanger.gif] [smiley=headbanger.gif]

Yesss!!!!
Great news!! I've been having similar experiences with the seeds. I'm happy to hear you're having some success with them as well!
What the seeds haven't seemed to take away, have generally been MUCH less intense. But since taking several doses, I haven't had many CH symptoms at all.

I'd say, go ahead and dose again in 5 days, and if you still get ch symptoms, do it again 5 days after that. I seem to have knocked my cycle right out (knock on wood) with similar dosing.

Best of luck, and keep us posted!!
Adam

Any questions or anything, feel free to pm me!

Title: Re: RC seeds...early days but cautiously optimisti
Post by andrewjb on Oct 20^th, 2007, 5:49pm

:), breath deep and stay hydrated. the pain relief energy release, must be used. i scream as i walk "hard" through the woods. yeah, i know ! but it seems to work. ever onwards to PF times. andrew.

Title: Re: RC seeds...early days but cautiously optimisti
Post by RayU on Oct 21^st, 2007, 8:31am

Thanks for support and info.
Three hits during the night, mostly k6/7, aborted quickly with o2. Heavy shadowing thus far today.

Have found a lot of useful information here on this subject (thanks MJ, Tim, Adam, nani, Andrew et al) and pondering : whether or not to wait 5 days before dosing again? Will see what the rest of the day holds and what my fear factor is tonight!

Cheers,
R

Title: Re: RC seeds...early days but cautiously optimisti
Post by Beastfodder on Oct 21^st, 2007, 10:15am

Good news Ray,

The way it works means you have to leave things at least for 72 hours before dosing again - that's the length of time it takes for the first dose to clear your system.

Dosing in cycle usually takes a couple of goes for it to clear up.

All the best

Title: Re: RC seeds...early days but cautiously optimisti
Post by RayU on Oct 24^th, 2007, 6:37am

dosed again 72 hours after last batch, but unfortunately no effect at all - was probably too soon for me.
Have been managing with o2 until last night but got hit particularly badly, o2 didn't work and in a moment of weakness I grabbed the injection...
Will try and stick to oxygen for next 5 days and dose again.

Cheers,
Ray

Title: Re: RC seeds...early days but cautiously optimisti
Post by ski2k on Oct 24^th, 2007, 6:48am

Sorry to hear you had to resort to the trex. Have you tried the energy drink trick along with O2? Seems to work well for a lot of people.
Hope this helps some, and keep trying! I think they WILL work for you, judging from your first post in this thread. Just gotta be more persistant than the beast! He will fight back!

I'll keep my fingers crossed for ya!
Best wishes,
Adam

Title: Re: RC seeds...early days but cautiously optimisti
Post by RayU on Oct 24^th, 2007, 7:18am

Haven't tried the drink - will stock up on some Red Bull and down one before the o2 mask goes on...
Seeds definitely did something first time round, just think last time was too soon and door was shut.
Really think the seeds are going to do it.
Cheers Adam,

R

Title: Re: RC seeds...early days but cautiously optimisti
Post by nani on Oct 24^th, 2007, 10:42am

I don't know how I missed this thread. :-[

It does sound like the seeds shook things up a bit, Ray. That's always a good sign. I understand about reaching for the trex... but try to stay strong. The buster treatments will pay off in the long run. A dose in another 5 days is a good idea. Maybe even hit it a little harder, with a larger dose.
Energy drinks, oxygen won't interfere... so hopefully they'll work well.
Keep us posted.
pf wishes, nani

Title: Re: RC seeds...early days but cautiously optimisti
Post by Sandy_C on Oct 24^th, 2007, 2:13pm

Ditto what Nani said, how did I miss this thread?.

Using seeds can produce harder, more frequent hits during the "initiation" period. It's tough to get through. You may get hit harder, more frequently and the hits may last longer.

No one will fault you for having to go to the trex during this time, but, you need to remember that once you do go to trex, you need to detox again before the next dose of seeds.

Once you have again detoxed, if it were me, I would hit with a minimum of 30 seeds immediately, and then wait 5 days and hit again with minimum of 30 seeds.

I'm an episodic with, luckily, long periods of pain free time. But, I've used the seeds as a monthly maintenance dose, and when my cycle seemed like it wanted to start, I hit with the larger dose (35 seeds), and gain 5 days later, and my cycle just ....ended. All gone. I'm a believer.

Sandy

Title: Re: RC seeds...early days but cautiously optimisti
Post by jackieg on Oct 24^th, 2007, 2:57pm

I need a little guidance from anyone who is in the mood to read this rather long winded cry for help. The seed treatment is still pretty new to me. I have been in a cycle for three weeks and am using seeds to help end it. I have been up every night, every two hours needing O2 and it is hell. Last Thursday, I took 25 seeds and slept through the night but the attacks returned the next day. Sunday night I took another dose and slept pretty well, only a mild hit. Tuesday (yesterday) I was hit so hard during the day and the O2 only kept putting it off. The pain Kip10 pain lasted for 3+ hours (never this bad in 20 years) which is very unusual. I was about one more hour short of going to the hospital. I took a small dose of seeds (8) last night and slept a full 8 hours, thank God! I had a mild hit this morning and it went away with O2. I am getting a little discouraged. Is it possible that it may take several big doses, 5 days apart to possibly break the cycle? Is it possible that they may only shorten the cycle rather than end it? Is it possible that the seeds are going to lengthen the cycle or make it worse? I am going to try another large dose on Friday. I took 25 the last time. Can I increase it to 35 safely? If the pain returns like yesterday, I am afraid I may have to reach for the Imitrex and I don't want to. Any advice is appreciated.

Title: Re: RC seeds...early days but cautiously optimisti
Post by billyjoe on Oct 24^th, 2007, 4:00pm

I wouldn't worry too much about increasing to 35 seeds, but I'm not sure it will help. I've tried up to 75 seeds to break a cycle without any luck. The next think on my list to try is the daily dosing of 5 in the morning and 5 at night. This has helped some. Good luck.

Title: Re: RC seeds...early days but cautiously optimisti
Post by birdman on Oct 24^th, 2007, 5:53pm

Sounds like everyone is having 'some' success with seeds but it looks like we are going to need patience. Something I do not have. Especially, since the O2 is not helping. Keep fighting Ray and Jackie, and hopefully we will all be through it shortly.

Title: Re: RC seeds...early days but cautiously optimisti
Post by RayU on Oct 25^th, 2007, 9:11am

After two hours of a major hit during the night - O2 and Red Bull were not my friends - I broke down and resorted to the trex...
So five day countdown recommences!