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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Long-time lurker, new poster. LSA worked!
        
(Message started by: BlackBuried on Jan 31^st, 2007, 11:56pm)

Title: Long-time lurker, new poster. LSA worked!
Post by BlackBuried on Jan 31^st, 2007, 11:56pm

Hello all-
My name is J , and I'm 30. I've been having CH's on and off since I was 17. I've lost jobs, including my enlistment in the US Navy, due to CH's, the sleep I've lost, and the hopelessness I've experienced as a result.

I've tried a menagerie of medications throughout my CH "career", and the only thing that seemed to help is massive doses of ibuprofen and coffee, and hot baths.
I recently had two years, headache-free. In fear of getting the cycle started again, I take two benadryls every night at 9PM to keep my sleep schedule regular.

A month ago, my CH's came back in full force (reliably, 3-5 headaches among every evening/night/morning).

I learned about LSA on the clusterbusters website, and purchased Hawaiian Wood Rose seeds on the internet.

I used 6 seeds. I couldn't get the hulls off, I ended up just breaking the seeds into pieces. I soaked them in water for two hours, and followed the instructions on the website.

The next few hours was an odd experience- not what I would call enjoyable by any means, but not a terrible experience either. In short, I'm surprised that anyone would use this for recreation.

This was last Saturday.

Since then, I have not had one full blown CH. I have had light headaches, but they just haven't kicked in. It is manageable now- for instance, I woke up with a non full-blown headache, drank a cup of coffee, and it went away.

It makes no sense at all to me why it would work, but it has (so far). This is nothing less than a miracle for me, personally.

I've never posted on this message board, though I've read it a bit. I feel that it is my responsibility to share my experience in hopes that I can help someone else that goes through this. (I didn't find a ton of info on LSA experiences/success myself).

I'll keep you guys posted!

Title: Re: Long-time lurker, new poster. LSA worked!
Post by MJ on Feb 1^st, 2007, 12:16am

Great news J keep spreading the word.

Sounds like a higher than normal dose but glad its working.

I also had and continue to have great success with LSA in the form of RC seeds.

Quote
"Since then, I have not had one full blown CH. I have had light headaches, but they just haven't kicked in. It is manageable now- for instance, I woke up with a non full-blown headache, drank a cup of coffee, and it went away." end quote

Makes you smile dont it.

Title: Re: Long-time lurker, new poster. LSA worked!
Post by BlackBuried on Feb 1^st, 2007, 12:29am

:) Most definitely.

Title: Re: Long-time lurker, new poster. LSA worked!
Post by BlackBuried on Feb 1^st, 2007, 2:31am

Well, I posted too soon. Not long after my last post, I got a bad CH that lasted about 45 minutes. I'm recovering now.

I am disappointed and frustrated, but I did have almost 5 days without a full-blown CH. Maybe I can try a low-dosage, continual treatment and see how that works out.

Title: Re: Long-time lurker, new poster. LSA worked!
Post by sandie99 on Feb 1^st, 2007, 5:57am

I'm sorry that you got hit again. [smiley=hug.gif]
Let us know what happends in future. But don't forget that if that fails, there are lots of other things to try and I'm sure that you will find something which will work.

It sounds to me that caffeine also helps you. Caffeine tablets and red bull help me, have you tried them? That's just one suggestion to consider in future.

Good luck with the seeds & PF days,
Sanna

Title: Re: Long-time lurker, new poster. LSA worked!
Post by tommyD on Feb 1^st, 2007, 6:51am

BlackBuried -

Don’t be discouraged. You've actually done better than most so far. For one, you seem to have skipped the usual post-dose hit, which usually comes around within a few hours to a few days after dosing with LSA.

And most folks need more than one dose - often it is a matter of three or four doses, or more, a week apart. Some chronics find they must dose every week or two for months.

A low-dosage continual treatment might work, or it might not - some folks are starting to think the five-day wait between doses might not be necessary with LSA, but this is still very experimental.

From your description of the LSA experience, you might find that a smaller dose will do, maybe four seeds rather than six. This stuff is not my idea of a recreational drug either, but it seems to do the trick.

I use 30 Rivea corymbosa seeds and can barely tell I’ve taken a hallucinogen, but it’s been keeping the big hits away lately. The Beast came around in mid-December, and I dosed then and again Dec. 30 and January 15. Throughout that time, I had one K-6, a couple K-5’s, and maybe a dozen or so minor hits K1 to 4. Currently getting a K-2 or 3 every three or four days, and those seem to fading in intensity and frequency, so I might be able to skip this weekend’s scheduled dose.

Here's to PFDN,

-tommyD

Title: Re: Long-time lurker, new poster. LSA worked!
Post by pattik on Feb 1^st, 2007, 9:29am

Hi J.
As Tommy said, don't give up on the LSA just yet. Most of the reports I have heard from people so far suggest that you will need at least three doses to make a noticable difference. During my last cycle of headaches, although dosing didn't end the cycle prematurely, I found that three doses of seeds made a significant improvement in the number and intensity of the hits. Since there is no standardization of LSA content from batch to batch, it's still a good idea to start with a smaller dose and work your way up to a level that works best for you. I used Benedryl too, and it didn't seem to interfere with the action of the LSA. You haven't mentioned if you have tried oxygen to abort. If you haven't tried it, I highly suggest that you check out the link at the left, and consider using it.
PF wishes to you.
patk

Title: Re: Long-time lurker, new poster. LSA worked!
Post by BlackBuried on Feb 1^st, 2007, 3:09pm

Many thanks to all for your input and support.

Last night was very tough, I had three back-to-back, slept for 2 hours, and woke up with a forth. Showed up to work at about 11:30 AM. One of the worst nights I've had in some time.

I will try a low dose tonight, maybe one or two.

As far as oxygen goes, i finally got a prescription a week and a half ago, for the first time after trying several times to get it.

However, the doctor scripted the wrong kind of mask and didn't specify the L/minute, so I couldn't get the tank and supplies. I keep hassling the doc's office to get this resolved, but it ends at the lady behind the counter. (I'm sure I'm not the first with this situation!) I may need to stomp into the office today or tomorrow and make my voice heard.

Thanks again, everyone.

Title: Re: Long-time lurker, new poster. LSA worked!
Post by Chillrmn1 on Feb 1^st, 2007, 6:42pm

Hi J,

As others said don't be discouraged. You actually seem very responsive to this treatment as I am with the CB therapy. Based on your first post in this thread your CH responded well imho. Lowering the amount as you plan may very well help avoid the odd experience and still provide efficacy.

As for the hull, I wasn't able to remove the thin brown coating either but that wasn't a problem except for maybe some extra gas.

Please update us on your progress and wish you painfree time.

Title: Re: Long-time lurker, new poster. LSA worked!
Post by BlackBuried on Feb 2^nd, 2007, 12:00am

Hello all-

I had to work until about 8PM to make up for the hours I lost. After last night's CH madness, I decided to take a smaller dose. (in my mind, I didn't really have a choice.)

I crushed two HWR seeds, soaked them for one hour, and drank the mixture.

This was nothing like the last time. Minimal weirdness and a very light stomachache. My girlfriend didn't notice a thing.

From the experience of the last month, I know for a fact that I would have had at least one full blown CH by now (10:48 PM).

Many sincere thanks to everyone who has responded.

By the way, what does PF, and PFDN mean?

Title: Re: Long-time lurker, new poster. LSA worked!
Post by BB on Feb 2^nd, 2007, 1:55am

on 02/02/07 at 00:00:32, BlackBuried wrote:

By the way, what does PF, and PFDN mean?

PF = painfree
PFDN = painfree day and night

I am glad to hear the treatment working well for you.

Did you go through the steps of detoxing ie stopping all meds prior to using the seeds?

PF wishes to you.

Annette

Title: Re: Long-time lurker, new poster. LSA worked!
Post by Chillrmn1 on Feb 2^nd, 2007, 4:54am

on 02/02/07 at 00:00:32, BlackBuried wrote:

This was nothing like the last time. Minimal weirdness and a very light stomachache. My girlfriend didn't notice a thing.

From the experience of the last month, I know for a fact that I would have had at least one full blown CH by now (10:48 PM).

That sounds great. Please keep us updated on any CH activity in the next few days. The 2 HBWR seed dose may be sufficient for treating your CH yet still not cause much discomfort as experienced.

Now I have a question: How long was it since eating that you dosed? A 4 seed dose for me did not cause any discomfort other than gas, but I had gone about 5 hours without eating before dosing. I'm just trying to help you avoid the discomfort. I didn't experience any "weirdness" either but again as others said the seeds do seem to vary in strength.

Wishing you pain free days and nights!

Title: Re: Long-time lurker, new poster. LSA worked!
Post by BlackBuried on Feb 3^rd, 2007, 3:27am

Thanks, all!

After taking the two seeds last night, I had a medium- strength headache when I got up in the morning.

Let me explain something first: I rarely get medium-strength headaches. For me it's either an annoying eye-twitching "shadow", or it's a full blown mindblowing, nuclear fallout.

I sipped on a cup of joe, and gulped some ice water. Amazingly, it went away.

This evening at work, about 7PM, I got the telltale headache symptoms, and a simple cup of coffee fixed me up.

Initially, I didn't expect the HWR seeds to eliminate my headaches. It did, for a few days. What I'm learning is that I get less headaches, and it makes the headaches more manageable.

I'm going to keep these seeds around. And if I get several in a night, I'm going to take action. I feel like I have some control now, and that makes me happy.

I will try to respond to all replies in this post.

MJ: Sounds like a higher than normal dose but glad its working. 

From what I read, I thought it was a normal dose. I did some research, but I may have been misled by the "recreational" reports. I was surprised at the strength of it.

Sandie99:It sounds to me that caffeine also helps you. Caffeine tablets and red bull help me, have you tried them? That's just one suggestion to consider in future. 

I haven't tried caffeine tablets- do you mean OTC stuff like NoDoz? As far as caffeine goes, it has its ups and downs for me. A good bit of caffeine may snap me out of a CH, but too much of it will give me a rebound effect.

TommyD: A low-dosage continual treatment might work, or it might not - some folks are starting to think the five-day wait between doses might not be necessary with LSA, but this is still very experimental. 

When I took two last night, I didn't have any problems except for a very minimal stomach ache, similar to eating too much food on Turkey Day. I will definitely try a low dosage continual treatment, because it is working for me.

Pattik: You haven't mentioned if you have tried oxygen to abort. If you haven't tried it, I highly suggest that you check out the link at the left, and consider using it.

I haven't mentioned this, but I've struggled to get oxygen from a doctor in my previous CH cycles, to no avail. Now that I have a decent job and insurance, since this cycle started, I've gone to a doc here in Houston. I got my first O2 tank today, but I haven't used it yet.

To make a long story short, he empathized and wrote me a prescription for O2, without writing the L/minute. When I went to the med supply shop to purchase it, they said it needed to be specified on the prescription.
The doc and the med supply place argued, faxes were sent amongst the two offices, and the end result:

O2 tank, nasal cannula, 1 liter per minute.

From what I read on this site, I get the feeling that this is not gonna work (the regulator adjusts up to 7 or 8 I think).

It may sound naive, but I am relieved to finally get the O2, after years of physicians looking at me like I'm a perv asking for Viagra.

I'll give this O2 a shot, and if it's not effective, I'll get a new regulator and mask on Ebay.

Chillrmn1: Based on your first post in this thread your CH responded well imho. Lowering the amount as you plan may very well help avoid the odd experience and still provide efficacy. 

Up to date, the HWR seeds, in just two times of taking them have been, by far, the most effective preventative drug I've had. The proof is in the absolutely regular and consistent headaches I was having nightly for weeks, and the 4 days without them after a 6 seed dose.
Since speaking with you all, I guess I may be ok with taking 1 or 2 at a time instead of the 6 which I originally thought was a small dose.

Chillrmn1: How long was it since eating that you dosed? A 4 seed dose for me did not cause any discomfort other than gas, but I had gone about 5 hours without eating before dosing.

The first time, with 6 seeds, I went 8 hours without eating beforehand (from internet advice). I had some pangs of nausea, but what I noticed the most was general lethargy and somewhat rapid breathing. The only discomfort I had was "psychological", and I put that in quotations because I'm no psych major. It was just uncomfortable, that's all.

When my girlfriend got home from work, she put on some Mystery Science Theater DVD's and we were good to go from then on. The uncomfortable experience didnt last but about 2 1/2 hours. I'd take that over a headache anyday.

The second time, with the two seeds, I didn't put any thought about what i ate. I had no problem eating and drinking before or afterwards.

Title: Re: Long-time lurker, new poster. LSA worked!
Post by Chillrmn1 on Feb 3^rd, 2007, 6:02am

Hi J,

Good report, thanks. On the O2, canulas and 1 L/Min is not going to work. When my O2 was first delivered it came with canulas and my reg went up to 15 L/min and that didn't work for me. You definately need the non-rebreather mask. I need a higher rate at first than 8 L/Min but others have posted that an 8L/Min rate has worked for them. Until you get the right mask you can improvise if needed.

Some folks have posted about using a plastic food storage bag or other type plastic bag whereby by they insert the tube in a hole in the bag allowing the bag to fill, then inhaling the O2, and then repeating when in a pinch. I know my desciption of this is poor, I haven't had to do this, so hopefully someone with better writing talents than I will be by to better describe this improvised method. However I hope you get the idea.

O2 is by far the best abortive that works for me.

PF wishes to you.

Title: Re: Long-time lurker, new poster. LSA worked!
Post by pattik on Feb 3^rd, 2007, 10:44am

A word of warning up front, when you start modifying your O2 delivery, you have to be more careful than ever regarding the explosive nature of oxygen. This being said, people have come up with some very creative ideas to get the O2 they need until they get a hold of the proper mask and regulator.
Below is a link to one thread which has some practical information. You must demand a regulator which goes up at least to 12 LPM (15 is better), and a non-rebreathing mask. O2 doesn't work for everyone or every headache, but when it does, it can be amazing.
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1142748998

Title: Re: Long-time lurker, new poster. LSA worked!
Post by Wilbur on Feb 3^rd, 2007, 11:43am

Always keep this thought in the back of your mind when aborting with O2: The quicker I saturate my bloodstream with pure oxygen, the quicker this thing will be over.

Title: Re: Long-time lurker, new poster. LSA worked!
Post by Chillrmn1 on Feb 3^rd, 2007, 1:05pm

Patti -Thanks for helping me out on that, good ideas in that thread especially about the canulas in the mouth.

There was another post/thread I've tried searching for but can't find......it was pretty ingenious how the individual fashioned a bag when is non-rebreather wasn't available. I remember thinking "Why didn't I think of that" when my O2 tanks were delivered with the wrong delivery system.

I'll keep trying to find it.

Title: Re: Long-time lurker, new poster. LSA worked!
Post by pattik on Feb 3^rd, 2007, 2:52pm

I could be mistaken, but I think Mr. Happy gets the credit for this. Again, this is only for emergencies and be careful of leaks!
http://i18.tinypic.com/4h33fbl.jpg

Title: Re: Long-time lurker, new poster. LSA worked!
Post by Chillrmn1 on Feb 3^rd, 2007, 5:01pm

BINGO! You got it Patti, Thanks. :-*

How did you find that? I seached and searched and couldn't find it.

Title: Re: Long-time lurker, new poster. LSA worked!
Post by jackieg on Feb 5^th, 2007, 2:43pm

Hi J,
My experience with the HRW seeds was similar to yours. I took too many (7) and ate the hulls/husks. I was sick as hell. Nausea, restlessness, sleeplessness, etc. Worst pain-free night of my life. BUT...I was hit 48 hours later with 6 consecutive headaches 1 hour apart, one after another, aborted each one with O2 . Then DaDa! The 4 month cycle was gone, gone, gone. This was last March. I felt like they were returning the past few weeks so I took a dose of shrooms and after a few days the shadows and other sure symptoms disappeared. The shroom experience was a more pleasant but still not something I would do for recreation. My husband, who is not a sufferer, happens to love them! I am hopeful. I may not be cured, but they do seem to be having a significant impact! Best of luck to you!

Title: Re: Long-time lurker, new poster. LSA worked!
Post by RichardN on Feb 5^th, 2007, 10:34pm

Hi and Welcome

Copy info off this site (will someone post the brightok link please?) and take to your doc. You definitely need the 15 lpm reg. and non-rebreather mask . . . and order a Clustermasx as soon as you can . . . even more effective.

When I first came here (2/02) and finally got a "name-for-the-pain" and weopons to battle the beast . . . 02 among them, my doc also prescribed 8lpm reg at 4 lpm . . . copied info off the site, went back and got the script I needed.

In the meantime (wasn't aware of the homemade bag), what I did was put my thumb over one of the nasal thingys, turned the reg up to 8 lpm and aimed the open end of the canulae at my mouth, inhaling just enough that I could feel the "overflow" (for lack of a better word) of 02, meaning that I was inhaling slightly less than the regulator was giving me and therefore coming closer to 100% 02. It did work if used quickly and if attack wasn't much more than a Kip 4-5 . . . . not nearly as effective as the non-rebreather mask at 12-15 lpm.

Be Safe, PFDANs

Richard

Title: Re: Long-time lurker, new poster. LSA worked!
Post by tanner on Feb 5^th, 2007, 10:48pm

BlackBuried, any positive news is good news to me. I have not had any notable good results from LSA by itself , but I did have and I think am continuing to have a slight improvement in the intensity of hits following my last bust which was a mixture of shrooms and seeds.

I have not posted about it here or elsewhere as I am still measuring the time/intensity factor. I will try again as soon as I figure out my supply issues.

For a 21 yr Chronic that nothing else has helped I feel what I have achieved thanks to the folks at Clusterbusters as HUGE! I have not had a k9/10 in over 2 weeks, and that is earth shattering to me.

Very happy for you and thanks for the post.......Tim

My level of depression has also gotten better :)

Title: Re: Long-time lurker, new poster. LSA worked!
Post by karma on Feb 6^th, 2007, 11:09am

HEY TIM,

[smiley=thumbsup.gif]

Title: Re: Long-time lurker, new poster. LSA worked!
Post by BlackBuried on Feb 12^th, 2007, 12:28am

All,

Sorry for the lack of updates - I know that it is selfish, but when the headaches subside, I tend to forget about the entire experience as fast as I can.

Since my last post (Feb 3rd), I haven't had a single cluster headache.

The new oxygen setup is in my bedroom, and I haven't used it once.

Title: Re: Long-time lurker, new poster. LSA worked!
Post by froggy on Feb 12^th, 2007, 6:04am

Blackburied, In the past, my husband has done the seeds (followed the directions to the letter) but didn't have any positive results. He's been chronic for 18 years.

This is really good timing for him, he's off of all of the prescription meds and I may be able to get him to try a mushroom dose. I guess I'm supposed to mix it with warm water and it turns into a tea. Would you tell me how you did yours? Thanks.

Title: Re: Long-time lurker, new poster. LSA worked!
Post by Chillrmn1 on Feb 12^th, 2007, 6:04am

Great news, happy you're PF.

Title: Re: Long-time lurker, new poster. LSA worked!
Post by Lobster on Feb 12^th, 2007, 12:52pm

Yes... nice to hear, BB.

Every time I think that LSA is doing nothing for me, I go another month without starting a cycle.

I guess what makes me think that they are doing nothing is that I feel practically nothing... I might as well be taking 30 Pez instead of 30 RC seeds. Then the shadows stop and I am good to go for another 4-5 weeks.

Title: Re: Long-time lurker, new poster. LSA worked!
Post by MJ on Feb 15^th, 2007, 1:49am

And the successes roll on.

Glad to hear about it BlackBuried.

Title: Re: Long-time lurker, new poster. LSA worked!
Post by MJ on Feb 15^th, 2007, 2:25am

on 02/12/07 at 06:04:42, froggy wrote:

Froggy Hi.

Thought I might address your statement.

It seems with the seeds that there really are no directions to follow to the tee, very good guidelines exist though

Obviously being safe and informed is first and foremost.

As with all medications we are all different maybe even different receptors are in play for each of us.

Manyof those who do have quicker success vary a little in their use of the seeds. Some dose more often, some less it just depends on what works for you. There are no doctors to advise us just experiences and they all seem just a little different with LSA seeds.

Some use more some less. More often than not its a few lesser doses of say 8-12 RC seeds following a 15-30 seed dose that actually does the trick when breaking a well set cycle.

What I am seeing more and more of is the repeat single maintenance dose after many weeks to keep many of us CH and symptom free.
Like Lobster above I do the same and life is good.

It was not as easy breaking the set cycle though without some experimentation for me and many others as well.

Title: Re: Long-time lurker, new poster. LSA worked!
Post by Lobster on Feb 16^th, 2007, 3:05pm

I never tried to break an established cycle with seeds.
Did it successfully with the stronger stuff, but not seeds.

My use of seeds is purely as a preventative. They might work, or it might be purely coincidental. That was my 3rd cycle-free January. Before alternatives my longest break was 1 January.

I do 25-30 RC seeds ground up in a pepper mill whenever I feel a shadow... and I mean that evening... no waiting until tomorrow to see if it really was a CH shadow. Sometimes I soak them, sometimes I do not. As I indicated, I feel practically nothing when I take them. And they do taste like a shit sandwich... nasty.

Title: Re: Long-time lurker, new poster. LSA worked!
Post by Sandy_C on Feb 20^th, 2007, 5:05pm

on 02/16/07 at 15:05:11, Lobster wrote:

Agred on the "nasty", but as far as I'm concerned, rc seeds are highly effective.

I began a monthly maintenance dose of just 11 seeds during the summer, knowing I was due for a cycle in the fall. Started getting warning signs, so upped the dosage to 30 seeds, and spend a lovely few weeks with just minor shadows here and there.

At the end of December my cycle began for real with my clockwork 8:30 pm K7 hit. I mixed up a 30 seed batch, aborted with O2, waited 5 days dosed again. All in all, took a total of four doses each 5 days apart, and aborted what shadows and low level hits I did get with oxygen. That first K7 hit, was the ONLY one that high. Haven't had so much as a shadow in over a month.

Makes me a believer! I sure hope it isn't purely coincidental.

Sandy

Title: Re: Long-time lurker, new poster. LSA worked!
Post by BlackBuried on Mar 1^st, 2007, 12:13am

Short update-
Since my last post on Feb 11, I haven't had any CH headaches. I've had a few ordinary headaches since then, but nothing bad.
Today at work I had one at about 5:30PM. Nothing terrible, but enough to have a struggle driving home (i.e, repeatedly considering pulling over). I haven't done the HWR seeds in a while, because I thought the cycle had broken.
The headache went away on its own.
About 10:15, I got another one, that I'm currently working on with O2 that maxes out at 8 pm, with the cannula in my mouth, exhaling through my nose.

In my experience, ithe seeds didn't completely break the cycle, but it's come damn close to it.

Even though it's a struggle to type right now, I think about before I took the HWR seeds, the 3-5 headaches a night, EVERY night. They are a godsend. I am confident that if I take a small dose tomorrow right after work, it will buy me at least a week with no headaches.

I noticed that you guys have been talking about RC seeds- is there a reason you use those instead of the Hawaiian Rose Wood seeds? I'm curious to if there is some confusion about what I've been taking.

I bought the HWR seeds online for (i think) 9 bucks + shipping) for 50 of them. I chose the Ghana version. I guess they're about 3 times the size of a bb. I put the amount of seeds I want in a ziploc bag, and hit it with a little framing hammer to bust them up. Then I drop the contents of the bag into a cup of water, and after 20 minutes or so, I drink the water with the crushed seeds.

The other night I made a little illustration for you guys, kind of a tribute to the chronic sufferers. I'll dig around on the site and see if I can find a good place to post it.

Thanks for listening, guys and gals.

Title: Re: Long-time lurker, new poster. LSA worked!
Post by nani on Mar 1^st, 2007, 5:36am

I'm so happy to hear that the seeds have worked well fo you, J. Another dose may very well keep things settled down until the cycle ends.
Many of us use RC seeds because we find it easier. HBWR seeds should have their hulls removed prior to soaking. The hulls can cause gastric discomfort, and aren't really good for you. RC seeds do not need to be hulled, and can be crushed whole. They are smaller than HBWR seeds, so generally you'd use more per dose. Seeds should be soaked for at least 2 hours, also. Try peeling the HBWR seeds before your next dose, it may go a bit more smoothly. :)
pain free wishes, nani