Hi - new poster, 1 year chronic.

[Thoro]

Hi, all.  37 year old Norwegian "newbie" clusterhead here.  Apologies in advance for a wordy post.

I've been reading this board for a little while now, having registered in September last year.  I was diagnosed with cluster headaches in late May 2010 after a series of attacks that started off very strong -- my first attack ever was in the middle of a crowded mall on a Saturday; I seriously thought I was having a brain aneurysm or a giant tumour had popped up or something.  After a few days of increasingly regular attacks I finally managed to drag my carcass to my doctor, who promptly had me admitted to the local hospital.

I'd been having an unusually long bout of migraine before and during the first attacks, so they thought the two might be linked.  However, as the migraine trickled away, the cluster attacks stayed.  All sorts of painkillers, blood pressure and migraine medication were tried, to no avail.  After about two weeks the attacks stopped abruptly; the doctors assumed it was because of the verapamil they'd put me on, gave me a prescription and sent me home.

Less than a week later, however, the attacks started up again, this time during the night.  They've not stopped since, but only increased in frequency and length of bouts.  I haven't been to the hospital except for scans and tests since, either.

My current specialist is a professor of neurology, considered one of the country's leading experts on headache conditions.  Since May-June of last year, I've tried a plethora of various medication, some with serious side effects, none with any actual effect on the attacks.  So far the only thing that's been proven to work for me is oxygen; it cuts down on the length of an individual attack, but does nothing for the actual pain level.

Being chronic, I have attacks every day, or rather night:  starting from about 1:30 AM, each attack lasting between 15 and 30 minutes depending on how fast I manage to get the oxygen mask on and how high the flow is.  Between attacks I get from 45 minutes to an hour of no pain before it starts up again -- this goes on until well into the day, sometimes even into the afternoon.  When it's done for the day, all I can do is collapse into bed and sleep.  This doesn't leave much in the way of a social life, it's turned me into a hermit.  The family helps as much as they can, but the sheer relentlessness of the attacks is taking its toll on them too.  I'm grateful, in a way, that I don't have a significant other or children; I doubt I could have managed to take care of them in any way.  I am not a smoker - haven't smoked at all, ever - and touch alcohol only extremely rarely.  I'm not in terrible shape, but could be better, and try to eat healthy food.

So far I've tried every painkiller under the sun, various triptans(sumatriptan, rizatriptan, zolmitriptan), naproxen, propranolol, prednisolone, verapamil, indomethacin, lithium, methysergide(Deseril), and none have affected the attacks in the slightest.  I'm currently ramping up to a medicinal dose of lamotrigin... but truth be told, I'm starting to suspect it won't work either.

I'm nearing the end of my rope.  The relentlessness of the nightly/daily attacks is destroying my life and my will to go on.  My father, a retired policeman, is now the one trying to convince me to try other solutions, after traditional medicine(and some alternative; I've tried both acupuncture and osteopathy, with no success) has failed.  He's even threatened to go picking mushrooms in the forest and making me try it, so I thought I'd better talk to the people who know about the proven effects of these alternate methods.

I have, of course, read the FAQs and instructions, and will be trying to compile a to-do list in order to be as systematic as possible in my approach... but it's still a somewhat daunting prospect.

Questions, comments, etc. are welcome, of course, and if you managed to plow through all that, thanks for being a patient reader.

[CHfather]

thoro, the thing that's weird about the busting alternative, of course, is that if it was legal if would be the first preventive anyone tried, not the last.  Effective for most people; no real side effects . . . What more could you want?

I suspect that some of our wonderful Scandanavian members might have advice for you about how to get busting materials.  We can all follow up then on specifics, based on what you decide.

So many people have come here in the condition you're in and been returned to a very, and often completely,  normal life.  There is no reason why that won't also happen to you.

I would also strongly recommend that you begin right now the simple, inexpensive vitamin D3 protocol that has helped many, many people quickly and also lastingly.  Take about 10,000 international units per day of vitamin D3, taken with food; 2 or 3 calcium citrate tablets per day, with or without food (ideally, these tablets should also contain magnesium and zinc); and 3,000-5,000 mg per day of Omega 3 fish oil, with food. That's it, except that many people find that a glass or two of lemonade or limeade per day with meals increases the effectiveness.  Many people start getting significant relief within a day or two.  The levels I listed above are the "default" levels--you might wish to adjust according to your own tolerance.  To read a great deal more about the D3 regimen, you could wade through the following thread: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0

Best wishes for pain-free days ahead.  Stay strong; it's going to get much better for you.

[Bejeeber]

Hey Thoro,

What CHfather said, only LOUDER!  ;D

And are you administering your O2 in the most effective high flow rate/non rebreather mask way as outlined here?:

http://www.clusterheadaches.com/O2/index.html

Asking because even the supposed top notch specialists can be dumb about this and prescribe the much less effective old antiquated low flow/rebreather O2.

[tingeling]

Hello Norway!! Welcome!!

I`m from Norway, so happy to see others from Norway too

Feel free to pm me, we can exchange tlf numbers and talk if you want

I`m one of the chronics who got my life back. Was excperiencing 4-9 hits a day for 6 years, now after busting i`m not bothered anymore, just every now and then. Amazing or what?!

We should talk, i would really like that And maybe i could help you out as well.

Painfree wishes from me.

Tingeling

[court1218]

Hey Thoro,

In my boyfriend's case we've had a hard time getting our hands on shrooms. D was chronic for about 3 years (not even knowing what CH was or knowing about the shroom option)  At any rate ... he has cut his headache frequency and level down considerably by doing an elimination diet. 

It has consistently reduced the pain and frequency over the last 8 months.  It's consistently been once a week and recently he goes about 2-weeks in between. 

I posted the results and the diet here under The ClusterBuster Files section: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1301882443

Also, if you are interested in this type of therapy in general watch the 'Food Matters' documentary or clips on youtube.com to learn about how important food is and the big money that goes into creating genetically modified foods (corn & soy and potentially salmon), spraying crops with dangerous chemicals and of course, pharmaceuticals. We all know that in high doses these things are bad for us. When they test these chemicals, if only a small percentage of the population has an adverse reaction ... it still goes on the market. That sucks if you are the small percentage.

I hope you try this even if you are able to get your hands on some shrooms =). 

Courtney

[Thoro]

Well, it's been a pretty bad month or so.  The intensity of the hits has ramped up significantly, and they last longer these days as well.

I "caved" not long after my first post and went to the All Salvia website to order a couple of packs of RC seeds to try out.  Fate being a fickle bugger, the package got delayed by three weeks, then stopped in customs, and they wanted permission to open it.  Rather than doing that I asked them to return it to sender, and got the sender to send another package... which has finally arrived.

I'm now looking at 8 little plastic bags of about 100 seeds each, and the thought strikes me that I really have no idea how much to take, how to prepare them and so on.  So I'd like some feedback from the rest of you, if you'd indulge me:  for those of you who use RC seeds, how many do you take per bust, how do you prepare them, and what, if any, side effects(nausea, etc.) do you get?

Lastly, I'm also still taking Lamictal(lamotrigine), an anticonvulsant sodium channel blocker that's the latest of a long string of what feels like my neurologist just trying stuff out on the off chance it might work.  Looking at the information available for it, it's said to have relatively few drug interactions, but I still worry that it might interfere with the busting.  Thoughts/advice?  Should I detox completely before going ahead with a bust attempt?

Any feedback is much appreciated.

[tingeling]

Crush 50 of them with a hammer, soak them for two hr in water or orange juice f ex and drink it all on an empty stomach. Go to bed and sleep like a baby. First times i slept in the same potition all night and woke up confused cause i slept for like 9 hr straight.

You should detox for 5 days, but you don`t absolutly have to, but then it might work not that good. But maybe good enough for you so you can handle full detox the next bust.

Good luck!!

tingeling

[Bejeeber]

Hi Thoro,

I think your Norwegian compatriot tingeling just dished out the real good advice there.

That's the same way I prepare and dose with RC. Alternatives for crushing the seeds are mortar and pestle or a pepper grinder.

I also take them before bed and my main side effect is the same as tingeling's - a better than usual night's sleep. I do experience an extremely brief moment of nausea before falling asleep, not a big problem.

I know that some people have busted successfully while on the calcium channel blocker verapamil, but it is more ideal of course to be completely detoxed from the crap they just try out on you. 

That SUCKS(!!!!) that your first order of RC got screwed up like that.  > :(

[tingeling]

BTW, check out my blog!! Just do it, i will continue to nag about this as long as i got only 1 follower... LOL ;D

[Thoro]

So, update.

Having gone off the lamotrigine(I waited a week, to be sure it was all out of my system), I finally decided to try out a dose of RC seeds on Saturday morning after the night's bout, before going to bed.  I ground 50 seeds thoroughly in a mortar, let them soak in water in the fridge for a couple of hours, mixed the nasty gunk with juice to be able to stomach it, and downed it all, and...

Nothing.  Not so much as a flicker of nausea, no tiredness, no effects or side effects whatsoever.  The clusters showed up regular as clockwork, with no change in character at all.  So I'm kinda full of questions.  Have I gotten a bad batch of seeds?  Did I use too few?  Should I now wait five days before trying again, and should I increase the dose for my second try?  If so, by how much?

It should be noted that I have a generally freakishly high resistance to pretty much anything, so I'm wondering if that's a factor.  I've never had a buzz from caffeine no matter how much I've drunk, I can drunk a pub full of Irishmen under the table(or could, anyway, before the clusters) and only feel kind of tipsy, analgesics simply don't work on me, and so on.  Funny story about that -- when I was just four years old I was in hospital for surgery to correct a lazy eye, and the surgeons had the hardest time getting me to go under the anaesthetic: they'd give me a normal dose for my age and size, and I'd be fully awake and aware, smiling up at them.  In the end they had to give me twice the dosage usually required to get an adult under; that was as high as they dared to go for fear they'd end up killing me.  In the end I finally went under, though, and according to my parents I spent the next couple of days stoned out of my mind on residual effects from the anaesthesia.   

Any kind of feedback is, as usual, appreciated!

[Bejeeber]

That's a tuff call, isn't it?

On one hand, There have been some here including myself who have gotten results from RC, only to find that suddenly we take a dose and nothing happens, and it raises the question of potency for the particular batch of seeds. I (and others) have ended up moving on to mushrooms and getting the desired results when the RC does nothing.

But you are a HEAVYWEIGHT in the tolerance dept., so I'm afraid I just don't know whether taking a high dose of RC would be worth trying or not, :-/ or if since you are so resistant, should you go with a more heavyweight (IMO) busting material such as psilocybin to match?

[Bonkers]

Hi Thoro,

I've yet to hear of anyone having an adverse reaction to RC seeds though I suppose if you take enough of anything you'd probably wish you hadn't. My son took 125 seeds with no reaction and that may well happen to you but since you've already got them, why not at least double your initial dose and see if anything happens. If not, read as much as you will in the ClusterBuster Files about busting with psychedelics and begin your search for a source. Good luck.

Ron

[tingeling]

I experienced this with LDS, shrooms and seeds. IMO it`s us, it`s just the way it is sometimes. But, when i have experienced it, it has been when i been in high cycle and also in the beginning when i started this treatment. For me, i need some busts in a row, wait five or three days  and bust again.Your a chronic and in the beginning, maybe you should consider to try another alternative, after all, it is hunting season. And also we live in the same country.

If you do not wish to try other options yet, try again with the seeds. Don`t give up, you just need to find out what dose you need, or what alt that works best for you. Don`t give up, this attempt is not disappointing, it`s a first try and the start to a new life. Remember, i was chronic for 6 years. Dan (hipshot) as well.

Just tell me, pm me or call me

My best wishes to you

Tingeling

[CHfather]

Thoro, Here (below) is something Ricardo posted recently at another thread about seeds no longer working.  In a later post he said, >>One important thing to remember is to let the peppermint tea cool down to at least room temperature before adding the seeds....Both LSA and LSH are supposed to be sensitive to heat.<<

Can't vouch for this myself . . . Professor_Tanaka tried it recently but hasn't posted about the results, except to say >>Peppermint + RC == definitely something different, imo.<<

Ricardo posted:  >>>The real thing I want to throw out there though, is something I've said over and over and kinda surprised no one else seems to have tried it.  Once you seem to be getting tolerance to the seeds, get a new batch, grind em up and soak them in cold peppermint tea for a few hours.  The peppermint tea is high in acetaldehyde, and according to our good friend (and my avatar) Albert Hoffman, the combination of LSA and acetaldehyde will make LSH--Which he said at low doses is indistinguishable from LSD.  Higher doses tend to give some people anxiety so I would start with a small amount and work you're way up (especially if you are an axious person to start with, I am not, and have taken damn high doses without any anxiety)  I can not attest to the chemistry behind all this, but what I can say is that it is a different drug (LSA makes me sleepy and kinda narcoticized, This stuff definitely did not make me sleepy--if anything got a slight stimulant effect from it, and it kept me up for 12 hours) and it seems to help my headaches.<<<

[Bejeeber]

Thank God for CHfather - the peppermint thing is really worth trying IMO, but I had forgotten about it.  :-[

[Thoro]

As it happens, I do have some peppermint tea.  Or rather, it's green tea with peppermint -- will that do?  If not, I'm sure it's possible to get some actual peppermint tea from somewhere nearby.  I really want this thing to work, I'm a little wary of trying the 'harder' stuff, like mushrooms.  Hallucinations really aren't my cup of tea.

[Kleinsopp]

Hey!

I'm from Norway too.

After my first shroom-tour () i had 2 painfree months! That included cluster, migrain, tension headache and much of my back and neck pain. (Gulerot)

The hallucinations etc. comes at much higher dosages than what you start out with. You might have the desired effects from much lower doses than what will give hallus.. You might get a happy grin on you're face and be a little restless/energetic, though..

Hope you get better!

Bare å sende pm hvis du vil

[Thoro]

So, yeah.  Second try, 50 seeds with the peppermint solution, as the message seemed to be that that would enhance the effectivess.

Still no luck.  Not a lick of difference to the nightly attacks, nothing.

I want to exhaust my options with the RC seeds before I try the mushrooms, primarily because I have no idea where to get them.  Should I try again with a significantly higher dosage?  I kind of suspected this would be the result, what with my chemical resistance to everything ever, but it's still a little disheartening to finally cave and try something I've been skeptical to because of the murky legality and all, only for there not to be a flicker of relief.

At this rate, I may end up having to go sniffing around in the nearby forests, hills and such for fungal remedies.

[tingeling]

There`s two not that far away from you here on the board. One actually very close. All you need to do is pm us or call us, we can help you.

[Kleinsopp]

Yepp. Also you can search parks and places with alotta grass. Spiss fleinsopp does not grow in the forest, but in open fields with grass. Seek the cow and ye shall find. Sørkedalen feks. It's season right now.

Or what Ting said.

[tingeling]

Stupid question but...you are using cold water to soak the seeds?

[Thoro]

Yes.  I am, in fact, wrapping the container with the water and seeds in aluminium foil to keep light out and keeping it in the fridge to keep it cool.  I'm not sure where I read it, but I do remember someone saying the crushed seeds lose some potency if exposed to too much light.

On an update-y note: third attempt, 75 seeds this time, soaked in water for several hours and then mixed with peppermint tea.   Nothing.  Not a hint of an effect either way.  I'm going to try again in 5 days' time, this time with 100 seeds.  Good thing I ordered enough to last for a few attempts!

[MJ]

I would think some results should be seen at 30 RC seeds however small. Only feeling would be a little lethargic feeling

Dont worry about the light too much, just maybe keep out of direct sunlight

High Chlorine in tap water can kill the good stuff. Luke warm water works best for a fast hydrolysis

The seeds should flatten like a pancake with a pair of pliers to assure freshness and not crumble.

Its not uncommon to get a batch of seeds grown who knows where with no LSA whatsoever due to age or growing conditions. Has happened a few times with me and the next batch will work with as few as 15 to 30 seeds.