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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Ready to try some seeds
        
(Message started by: Corax on Jul 4^th, 2007, 6:09pm)

Title: Ready to try some seeds
Post by Corax on Jul 4^th, 2007, 6:09pm

Hello All,

I’ve been lurking on and off for years, mostly looking to see if there are any new treatments, but this is my first post. Somehow in my previous lurking I missed the mushroom and seed threads. Was so excited I could hardly stand it when I found them a few days ago. Been researching like crazy ever since. I first found the mushroom threads and was all set to order stuff and start growing but the thought of the time it will take to have the grown product was depressing… I’m at the end of my rope. I’m a chronic and am over 4 ½ years into my current session. At their peek I was getting 7 a day, (all K8-10 if I don’t get on O2 right away. O2 usually stops them by the time they reach K7 or sooner depending on how fast the onset was and how fast I get on O2). The last few years they have settled into 1 every few weeks but I have a K2-4 “background” headache 24/7 and some days I have many “icepick” flashes of varying intensity daily that leave the background worse for hours. (I have about come to the conclusion that this is as close as I will get to another remission) About 1-2 times a month I have a K1 day and that is as close to pain free I have been in the 4 and a half years. When I saw the seeds I ordered some immediately and with luck they will be here Saturday… but more likely not until Monday because of the Independence Day holiday. The only thing I have to control them is O2. None of the other treatments work for me, I’ve tried them all. O2 does nothing for the “background”

I have had them since I was 8 years old and am now 37. Like many they were originally misdiagnosed as Migraine at first. They were not diagnosed as Cluster until I was 17. My longest remission was just before this cycle. It was over 4 blissful years.

I have never used an illegal drug in my life… But I don’t care. All My family and friends say go for it. I figure the worst I would likely get is house arrest… I have that now with the headaches anyway, so no big deal. I am very light sensitive so I don’t go outside if I can at all avoid it. I don’t drive because the icepick flashes can be very intense and with no warning.

My plan is to go with a little bit of a large dose (not major, just an extra seed or 2) since I am in such a well established cycle and tend to be extremely resistant to nearly all types of drugs. i.e. 4 Percacet gives me a mild ring in the ears and a slightly flushed face, and a minimal pain killing (for back pain, does nothing for the clusters). And I can drink 6 shots of Vodka and just get a mild-moderate buzz. I will have a “babysitter” for my first dose. And if I “meet God” it would just give me a chance to chew him out! I do have some anti-depressants if the trip becomes too much. I understand that will abort or at least reduce it.

What do you guys think of this idea? I really want to get them knocked out ASAP and don’t want to have to wait the 5 days if I don’t get enough.

I can’t thank you guys enough for all the work you have done on the subject! I just wish I had found it sooner. I’m sick of being a prisoner in my own home. I would like to be able to go out and do things with my wife and with friends again. I am the neighborhood hermit.

Thanks again for your input and diligent research and sharing. I'll let you all know how things go.

Corax

Title: Re: Ready to try some seeds
Post by Charlotte on Jul 4^th, 2007, 6:48pm

I think it sounds a little reckless. You say you have a background headache and ice picks, those may be hemicrania continua and/or sunct, or something else entirely.

Please be carefull.

Charlotte

p.s. Does anyone have experiece with seeds helping with other TACs?

Title: Re: Ready to try some seeds
Post by nani on Jul 4^th, 2007, 8:50pm

Hi Corax. I agree that you mat be having more than one type of headache. It may be best to get that sorted out before you dose. Please read the LSA FAQ here:
www.clusterbusters.com
It's the best "busting" info out there for us. I can't type more, LOL, I just had hand surgery... hopefully more folks will ad to this soon.
pain free wishes, nani

Title: Re: Ready to try some seeds
Post by Corax on Jul 4^th, 2007, 9:51pm

Ya, I know my headaches are weird. But I've gone all the rounds with Drs. and have been doing this for a long time. It just seems like the nerve gets "hot" after having a CH and doesn't ever cool down before the next one. The Dr at the headache clinic I went to in '87 called them "Atypical Chronic Cluster." Went to Dr Seymour Diamond in the early '90s and he didn't seem to have a problem with the diagnosis. They both said the constant headache between was very unusual but not completely unheard of. I have been assuming the “shadows” you guys have been talking about were something similar to either what I call my background or what I have always called “flashes.”

When I was a kid I was episodic with a long fall and a short spring episode. I was able to control them with Elavil and Periactin (sp?) which is an anti-histamine. Neither worked alone, it took both, but that stopped working when I was 16. In my early 20s is when all hell really broke loose and I went chronic. For over a month I was getting 8-12 a day 30 min to 2 hours each, usually on the short side of that. The pain lvl was in the K7-K10 range usually closer to the 10. Then I finally got O2. I literally hugged the tank. I couldn’t have taken much more of that. After that I spent months going to many Dr’s and clinics all over the country. I went through everything short of surgery. I get some relief from lidocane nose drops but it’s only for when I get caught without O2. Finally gave up and stuck with O2 through the rest of the more than a year and a half of that session.

I went to my local Dr and neurologist for the next 2 sessions I had. Happily they were shorter like episodic and I had long remissions. Then this current session hit… was getting at least 3 a day for over 2 years. Most of the time 5-7 a day. Then they started to taper off like usual. I’ve had them hang on with less than one a day for a few months before but never like this… they just never went fully into remission.

Hopefully that will clear things up a bit.

Corax

Title: Re: Ready to try some seeds
Post by Pinkfloyd on Jul 5^th, 2007, 1:31am

on 07/04/07 at 18:09:09, Corax wrote:

I have had them since I was 8 years old and am now 37.

I’m a chronic and am over 4 ½ years into my current session.

the thought of the time it will take to have the grown product was depressing…

Based upon 19 years of clusters, with the last 4.5 years as chronic.....and taking 45 days to possibly finally having a treatment that works......was depressing? One that might give you a lifetime supply of "meds" for under $100.00?
Had a doctor told you this in an office visit...would you have come out depressed?

Being chronic makes it more difficult to break a cycle, especially with the seeds. Although they will give you a good idea as far as how well the psychedelic treatments would work for you, odds are the psilocybin might be more effective and faster than the seeds. Not necessarily, but in your case, the mushrooms would be the odds on favorite to break the cycle the quickest.

Your headache pattern is quite complicated but I have no reason, based upon what you've said, to doubt the diagnosis as just atypical chronic clusters. Sounds more reasonable than having the misfortune of having both clusters and SUNCT together.

Just because you aren't very sensitive to most medications you've been using, doesn't necessarily mean that you'll be less sensitive to psychedelics than normal. I'd stick with the suggested guidelines. They are set as they are for a reason. If you get some positive results for the first dose, even a slight one, I would think that waiting 5 days is little to ask after waiting 19 years. You could have a bad reaction, by overdoing the first dose, scrap the idea altogether, and possibly pass up a treatment that could end up changing your life, like it has for hundreds of others.

Take it slow.....carry the hope with you from dose to dose. You'll get there.

If the first dose of seeds proves positive, I'd order the supplies for mushrooms. You can always switch over at a later date then, if you need an extra boost to finish off the cycle.

just my 2c
Bobw

Title: Re: Ready to try some seeds
Post by MJ on Jul 5^th, 2007, 1:40am

Corax- use caution and tread easy for the first dosing and remember we are all a little different in the way we could be affected by the LSA containing seeds..

Which seeds did you order RC or HBWR? I have zero experience with any other than RC seeds.

That said I have yet to read or hear of anyone "tripping" on the RC seeds. Expect more of a lightly sedated feeling at best. I feel nothing at all any more under 20 seeds.
My reccomendation is initially dose at night a few hours before bed and you may get a nice sleep with the rivea corymbosa seeds (RC).

I am similar to you as I also had multiple headache types, frequent ice picks or bullet attacks between the major cycles, constant background migraine type HAs at times, 8-12 k10s per 24 hrs lasting as long as 2 hours and often couldnt tell when one began anew and frequent silent attacks when I wasnt in full cycle. cycles would last from many months to the longest being 3 years. None of these have occured now in quite a while.

Dont expect it to be easy to break a well set cycle, for some of us it takes a bit of doing. And be sure to be detoxed off most other drugs for the best chance at success.

I wish you luck and much advice is available here if you need it.

Title: Re: Ready to try some seeds
Post by Sandy_C on Jul 5^th, 2007, 5:56pm

Corax, I agree with the other. Take it slow and easy.

Are you taking any meds now? If so, you should detox before dosing with the seeds. Since you are in cycle, your first dose might be in the neighborhood of 25 to 30 seeds, crushed and soaked in 2 oz of water or wine for a couple of hours. I use water, but only because alcohol is an instant trigger for me.

DO NOT EXPECT A MIRACLE! This will probably not stop you from getting hits immediately. As a matter of fact, you may get a couple of really doozies for a few days. Wait them out. Use oxygen, Red Bull, ice, water, anything that helps, but no meds. You are going to have to tough some of the hits out. Wait those 5 days, then dose again. It takes time for the "good stuff" to get in to your system where it actually does some good.

Patience is the key here. I started my cycle in January, hit it immediately with 30 seeds, waited five days, hit again with another 30 seeds. My cycle ended in less than two weeks, with a total of about 4 hits, only one ramping up to K7. The cycle ended. They usually last 8 to 16 weeks.

I also had been, taking a monthly maintenance dose of 12 seeds even while out of cycle, and I still do this now. Maybe that helped when my cycle actually started, who knows.

All I do know is that I'm a believer in this therapy. Even with 30 seeds, I have never tripped, just felt relaxed and calm. I take my doses in the evening, and sleep like a baby.

Good luck

Sandy

Title: Re: Ready to try some seeds
Post by Corax on Jul 5^th, 2007, 7:07pm

on 07/05/07 at 01:31:27, Pinkfloyd wrote:

Based upon 19 years of clusters, with the last 4.5 years as chronic.....and taking 45 days to possibly finally having a treatment that works......was depressing?

Actually its 29 years. OK so Depressing was the wrong word… Excited and very impatient would have been better.

I have been bouncing off the walls since I started reading about this Monday. My wife used the word “giddy” to describe my mood. I have been in pretty bad shape. My wife made me get some anti-depressants last week because I have been making too many suicide jokes. (i.e. “I figured out a perfect cure!!! 100% effective! Stick your head under water and take 10 deep breaths. Now I need to work on the side effect.”) The fact is if I didn’t have her I would have done that a long time ago, but I could never do anything that would hurt her. We met when we were both 15 so she’s been with me through a lot of this. She keeps me from falling apart.

I fully intend to get a mushroom farm going. Just need to go on a shopping trip for the stuff to grow them this weekend and place the spore order, will likely do that today. Been researching what strain to get.

I got HBWR seeds. From the very brief info I read before I ordered them (Like I said I am impatient to start trying this. 4 1/2 years is long enough.) they sounded easiest to remove the husk. I didn’t read about the pepper grinder and coffee filter method until later. My plan was to take 5-6 seeds. According to clusterbusters that’s a little more than the mild effect but quite a bit less than the stoning effect with 8-12 seeds. Not trying to get myself loaded just want to give the beast a good right hook. With my past experience of high resistance to most types of drugs and my tendency to build up tolerances quickly I just am worried about starting too low and just building up tolerance without giving the beast a good kick.

I fully understand and am prepared for this to take several weeks or even months to break this entrenched cycle. (All the more reason I am impatient to start, lol) But I finally have hope again.

As to detox… not a problem. I had only been on the anti-depressant for a week. Stopped it the day I ordered the seeds. Since the cycle I had when I was 22 I have had nothing to control them except O2. Nothing else works. Immitrex and ergotamine just cause rebounds so I don’t bother with them. I haven’t had any maintenance drugs that that did a damn thing since I was 16.

Thanks again to all for your sharing your experiences with this!

Corax

Title: Re: Ready to try some seeds
Post by Pinkfloyd on Jul 5^th, 2007, 10:13pm

on 07/05/07 at 19:07:20, Corax wrote:

Actually its 29 years.

yeah, you're right....my mistake. I wish it was that easy to take away 10 years of someone's pain.

Those of us that have been blessed with wonderful supporters, understand fully how lucky you are to have had a good person at your side.

best of luck,
Bobw

Title: Re: Ready to try some seeds
Post by Patrick_A on Jul 6^th, 2007, 4:30pm

GL!

Title: Re: Ready to try some seeds
Post by Sandy_C on Jul 6^th, 2007, 4:54pm

Corax, bring your wife on board here. As a supporter of a Clusterhead, she also needs some support. We're here to help her as much as you.

You are lucky to have someone like her.

Sandy

Title: Re: Ready to try some seeds
Post by Lauttie on Jul 7^th, 2007, 10:52am

Hello all,

I am Corax's wife. Thank you for helping my husband to be giddy! I have felt like Corax has been back to his old self the past few days, and it's nice to see. This fours and a half year session has been hard on both of us.

I'm usually trying to forget that Corax has these nasty things (not very successfully most of the time), so I don't come to forums about it. Corax also tries to hide his pain from me so that I'm not constantly reminded. He's such a sweety. When he's in remission, which has been a long time ago, we usually don't talk about the CH's. I guess we're afraid they will come back by talking about them.

I don't think I can really say much more than what Corax has already told you. If there are other CH supporters out there, I know your pain of having to watch the one you love in agony, so you are not alone. It has been very hard for both of us. I'm just happy that there's finally some hope for him!

Again thank you to everyone!

Lauttie

Title: Re: Ready to try some seeds
Post by Corax on Jul 9^th, 2007, 6:47pm

on 07/05/07 at 22:13:50, Pinkfloyd wrote:

I wish it was that easy to take away 10 years of someone's pain.

Ya, wouldn’t that be nice! Instead the pain just takes years of our life away from us.

Well the seeds showed up on Saturday. I started to try 5 after your advice but when I saw the mess I made trying to remove the husks I decided to add 1 more. I figure I lost at least 1 seed worth de-husking, lol.

After I took them I was afraid I didn’t get enough because I didn’t feel a thing… not even sleepy. I didn’t even get a much needed good nights sleep >:(. But it seems to have been enough to piss off the beast. Sunday I felt horrible most of the day. My constant headache was up to a K4-5 and sometimes approaching a K6. I also had 2 hits that sent me scrambling for O2 and I haven’t had a daytime hit in many months. By bedtime I was feeling back to my normal K2-3. So far today I’m feeling pretty good. My background is down to a high K1. Since the dose I haven’t had many of the icepick flashes either. I’ll try again later this week if I don’t get lucky and have them stop by then.

Thanks again everyone! It's nice to have hope again!

Corax

Title: Re: Ready to try some seeds
Post by Pinkfloyd on Jul 9^th, 2007, 8:17pm

good Luck Corax,

How long did you soak the seed pulp before injesting them?

Bobw

Title: Re: Ready to try some seeds
Post by Corax on Jul 9^th, 2007, 8:20pm

A little over 2 hours.

Title: Re: Ready to try some seeds
Post by Corax on Jul 20^th, 2007, 11:38am

I've dosed 3 times now, upping the dose a bit each time. I finally felt some effects on this last dose, though not much. Mostly just felt a little disconected and sleepy and had an upset stomach. (I don't see why anyone would do that for fun). So far every dose has been followed by a bad day, then a fairly good day but not pain free. The day after that goes back to normal. I will try again Monday but I think I may have to wait for the shrooms to grow. :(

Thanks again for all your help

Corax

Title: Re: Ready to try some seeds
Post by billy_the_kid on Jul 20^th, 2007, 8:30pm

does melatonin have any effect on the benefits from the seeds ? [smiley=huh.gif]

Title: Re: Ready to try some seeds
Post by nani on Jul 20^th, 2007, 8:45pm

Yes. It's believed that melatonin, triptans, and narcotics interfere with the efficacy of the clusterbuster treatments.
Go to www.clusterbusters.com and read the LSAFAQ

pain free wishes, nani

Title: Re: Ready to try some seeds
Post by Corax on Aug 6^th, 2007, 5:39pm

Hi everybody,

Just wanted to give you a little update. I got some unexpected teenage company and didn't want to use the seeds around him. So I havn't had a dose in a few weks now. Planning to try tomorrow. I'm afraid my cycle is kicking back up, many more much worse shadows the last week. [smiley=bomb.gif] I really don't want to go back to my normal 6-10 ch a day. [smiley=bigcry.gif]

Mushrooms are growing too slowly >:( I want my life back.

Corax

Title: Re: Ready to try some seeds
Post by Corax on Aug 19^th, 2007, 5:05am

Another update

Dosed 2 more times since last post. Same result. One bad day followed by a good one. Up to 11 HBWR seeds last time. I noticed a bit of a difficulty concentrating for about 20 minutes or so at that dose, and that’s about it. I’m afraid I’m having the same resistance problem I have with nearly every other drug I’ve tried. I know most of you have said you got some good sleep after using seeds. I have a worse time sleeping… I sure hope the shrooms work better. And I really wish they would grow faster! Will try seeds again in a few days. Not going to give up, at least they do seem to have some effect, even if not enough of one. That tells me something is going on there.

Pain free wishes to all

Corax

Title: Re: Ready to try some seeds
Post by Pinkfloyd on Aug 19^th, 2007, 7:06pm

on 08/19/07 at 05:05:11, Corax wrote:

I have a worse time sleeping…

Will try seeds again in a few days.

Some people have a more difficult time sleeping...not uncommon at all.

Good luck with the seeds. Hopefully they will at elast help some with the attacks and stop things from getting worse while waiting for the fungus.

Bobw