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New2Site - migraines and CH - HELP

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Hi all. 33yo Male, chronic migraines 21 years, cluster headaches 5 years.

 

i know I'm going to be repeating common questions because I've seen some already, but the forums are very long and there's so much info I can't possibly take it all in. Apologies.

 

im on day 8 of a cluster, this marks the first time a cluster has exceeded a week for me. The non episodic period is typically been 1-2 years between clusters, and then during a cycle I'm at pain every 12hrs typically like clockwork. This cycle is new, there have been 24hr periods between in some cases, and as few as 4 hours between cases this cycle. 

Im a chronic transformative migraine sufferer with chronic daily headache. Wake up with a lvl2 or 3 headache that I carry around, 12-15 days a month those will transform into lvl7-8 migraines. I used to think the migraines were 10s on the pain scale until the CHs started. Those are flat 10s every time. They are definitely suicide headaches, I lock the guns up when a cycle starts - last night I was begging my wife from the shower at 2am to just bring me a gun and let me go. They're so bad. this cycle also marks the first time I've nearly ran out of medicine. New Rx coverage is terrible. I need 18treximet a month but can only have 9, for my regular migraines, now with this longer (relative) CH cycle I've exhausted those, I've also obtained a 6 pack of sumavel injectors (the stinging nectar of the gods) and exhausted those, and now I'm on an "out of pocket paid" 9pk of 100mg imitrex that I'm grinding up into a powder and dosing in combination with naproxen for fastest chemical delivery and to simulate treximet. I have 5 left, not sure what I'll do if this cycle extends past the next 3 days...

ok, history complete, on to the ask:

im reading a lot on the site about LSA, but not seeing as much about it on the forums. I'm not interested in halucinagens for their recreational properties, let's get that out of the way. Am usually a recreational marijuana user but not during migraines or CH cycles because it exacerbates my symptoms, but I've got seedy connections but unfortunately no connections for LSA/LSD etc. 

has there been any success among you CH veterans with breaking a cycle by micro-dosing using the "legally available to purchase but not consume" seeds and plants mentioned here on the site? 

Im willing to eat the raw end of a ******'s *** if it will stop or even slow a cycle. I do have an opiod Rx (quantity 30, typically lasts me 3-4 months, used as a prophylactic when a headache is about to turn into a migraine, and used sparingly) but I avoid altogether for CH because it likewise often makes matters worse. 

Im in dire need of any advice ya'll have learned on your journeys, because the end of my rope is fast approaching and I can't afford the $900 out of pocket on treximet or the $2,400 out of pocket on sumavel even once, and tolerating a migraine without medicine is bad enough, a CH for me unmedicated is unfathomable.

much love, and appreciation, ahead of any replies,

 

-D

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D,

Glad you found us.  Sorry you're having a bad go of it.  LSA is a great place to start.  When I started unconventional meds 8 years ago, LSA seeds were first thing I tried (and for the most part work GREAT!) 

In a nut shell the two most common sources of LSA is via Hawaiian Baby Woodrose or Rivea Corymbosa seeds.  They can be legally purchased over the internet.  A VERY easy water extract process can be used to get the LSA out of the ground up seeds.  Here's a link directly to the LSA / seed overview and process here on ClusterBusters. :)  

(odd, the site won't let me paste the link in :(  Here's how you get to it:

1) On the top click "Forums"

2) Click the second forum called "ClusterBuster Files"

3) Scroll down to #5 " "

 

PFW,

J

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If you're going to go LSA, you probably want RC (rivea corymbosa), which is generally easier to work with that HBWR.  Two places considered reliable suppliers of both are www.tranceplants.net and www.iamshaman.com.   I'm hoping that by the time you receive them, you won't need them anymore.  The file that THMH referred you to is a little conservative about quantities, so please check back with us.  There are instructions here for a more complicated extraction using HBWR.

Are you not taking a pharma preventive for the migraines? (Verapamil is usually what is used first.)

Have you looked into sites like goodrx.com for lower prices on prescription meds?

I think you should give the vitamin D3 regimen a good try.  Apparently it's very helpful for migraine as well as CH. https://clusterbusters.org/forums/topic/1308-d3-regimen/

Try chugging an energy shot, such as 5-Hour Energy, at the first sign of a CH attack.  The caffeine, plus the taurine, helps a lot of people.

To abort CH attacks, the most important thing to have is an oxygen setup: tank, regulator of at least 15 liters per minute, and non-rebreather mask.  Doctors can and should prescribe this, since it's the #1 medically recommended abortive. But often they don't.  Many people with CH (maybe 15-20 percent) set up their own O2 systems using welding oxygen and purchasing the regulator and mask online.  Yes, these things cost $ (an initial investment of ~$200), but oxygen is the life-saver for virtually everyone with CH.

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Hi D,

I feel your pain. I have chronic daily headaches, my longest one lasted 7 months, non-stop. And chronic migraines and chronic cluster headaches. I've always had migraines on and off, they run in the family. The chronic dailies and clusters joined the party in 2007, and I've had them all, all the time, ever since. No periods of escape for me. 2007 was my Year of Hell, when the headache lasted 7 months and was being enhanced by the migraines (which lasted 3-7 days) and twice-weekly cluster attacks. 2010 was also a really bad year when my clusters ramped up to 2-5 a day, every 2-3 days for a year. 

I've come up with 3 pain scales. My headache pain scale of 1 - 10. On that scale, I start taking pain killers at a 3, leave work at a 7. My migraine pain scale starts at a 7 or 8 on the headache scale, and yes, like you, sometimes headaches turn into migraines if I don't fight back quickly enough. Then, my cluster scale starts at a 7 or 8 on the migraine scale, but the '10' on the cluster scale is way out there. Like 100 on the migraine scale. There really is no comparison, and I've had clusters go off my scale all the way up to 14 or 15. Scary stuff.

I haven't broken a cycle with micro-dosing, but do micro-dose regularly. I use about a 0.20 g capsule of mushrooms, which has zero noticeable affect on me. Doesn't even make me drowsy. But, it builds up over time and helps, takes 5-10 days to build up enough in the system to notice an improvement. 

Next up from that is RC Seeds as CHFather mentions above. I wrote up my recipe for taking them a few years ago and posted in the Files section. Called it MoxieGirl's Seed Recipe or something like that. I don't really trip much from seeds, more like having a couple glasses of wine on an empty stomach, and they easy to get a hold of. 

Seed and Shrooms are both great for migraines too. The year I started on mushrooms I had had around 60 migraines that year. The very next year, I had 3. 

I've been busting with shrooms and seeds off an on for about 6 or 7 years now. My clusters are down to 1 or 2 a month, each lasting less than 5 minutes. Most of the time they make me stop what I'm doing and catch my breath for a minute or two, then I press on with whatever it was I was doing. A few times a year I'll get one that lasts 30 minutes or so, but again, really mild. I've had maybe one or two that have exceed a 6 in the last 2 years or so. 

If I were to make a list of things to have or try, it would probably look like this:

Abortives: Oxygen, Energy Drinks, Chocolate, Coffee.

Preventatives: D3 Regime (which I can't take), Mushrooms and/or RC Seeds or LSA. 

Nothing any doctor has given me has ever helped. I do all my own medication, and it's much more effective and less side affects. 

MG

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58 minutes ago, MoxieGirl said:

Abortives: Oxygen, Energy Drinks, Chocolate, Coffee.

Did you really mean chocolate, MG?  Wondering because I know that's a trigger for some people.

When C'M gets to processing the seeds, we will definitely refer him to your recipe!

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Holy shit! I did not expect so many replies so fast, 20 minutes in the first example .

finding this site has been a blessing, I've had the migraines most of my life but CH is mostly new so all the baggage and psychological shit was almost too much until I realized so many other people are having the same experience. Thank you all! 

To reply in order:

THMH; thanks for the info. I was going to stop at a local store on the way home but had to pull over and spend an hour on the highway waiting for meds to work :-( saw the same info you provided in the site and understand the process. Will be ordering online today probably. Thank you for replying so fast!

CH: I do take a prophylactic, but verapamil never helped me. No preventative has ever helped the migraines, I can't say if any have prevented CH cycles because of lack of data. Just haven't had that many cycles yet. I was a volunteer FF so I did know about oxygen but I thought it was a lot harder to get it in the home. I'll look into this. GoodRX and energy shots are something I didn't know about and will try straight away.

Moxie: are you sourcing your mushroom capsules locally? Just curious because you're able to know the dosage, and that sounds controlled - I don't have a connection to help with that which is why I'm going to try the LSA seed extraction. Chocolate is absolutely a trigger for me.

 

ill look into the D3 all, thank you!

 

no hope in sight of busting just yet, had another at 6pm yesterday, then again at 10p, and again at 8a today. Nearly out of abortives. Shit is about to get real.  

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Ok, I've called my doctor and left a message about the Oxygen. I'm sure that'll be a process and take some time, and i've also ordered 20 HBWR and 100 RC seeds from TrancePlants (the other site was out of stock). Seems like that ships from Canada, and i'm in the US, so i went with the $26 XpressPost shipping, hopefully that rushes things along. 
My wife works in Medical Billing industry, she looked into GoodRX and unfortunately it's not any help. My insurance coverage is good, it's just this particular PBM is very hard to deal with on high cost medicines, and i cannot get them to approve my PriorAuth for 18x Treximet. I seem to be having some good luck with the 100mg Imitrex, i've been grinding them up with a Mortar - it's god awful on the palette but it seems to get to work faster that way. Sometimes as quickly as 5 minutes, other times significantly longer (i'm guessing this'll depend mostly on what else is in my stomach already). The 5hr Energy is a no-brainer, obviously i ran right out and bought some. Even if it doesnt work for me, there's absolutely no harm in trying. I already drink MonsterZero (which uses Taurine), although i haven't been drinking any lately - and i wouldn't be able to chug one of those, so here's hoping that 5Hr energy is helpful. 

Anxious to here how Moxie gets a .2g capsule of mushrooms. Also, when i make the LSA extraction, is that storage stable or should i only make what i intend to consume?

Thanks in advance!

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Good for you for ordering express post on your seeds.  Takes forever, otherwise.  With 100 RC, you might have to switch to the HBWR for a third dose. 

Here's the problem, which you probably should have been alerted to before: You will have to stop taking the Imitrex.  At least it is very strongly believed that Imitrex will block busting.  That's why O2 is so important.  Some people wonder whether Imitrex actually will block busting, but it's been an article of faith here for a long time that it will.  You could try, I think.

Here's hoping (a) your cycle just ends soon; (b) the energy shot helps you (some people like them as cold as possible); (c) the D3 regimen kicks in fast (it sometimes does); and/or (d) you get O2 soon.  Any chance you can borrow some equipment from your former volunteer FF associates?

 

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That's very good to know, so you're saying the seed busting approach is very unlikely to work while imitrex is in my system? Do we know what the halflife is? How long I need to cycle out before trying to bust via LSA?

 

i already injest taurine via monster zero so I'm not hopeful on the 5hr but I'm trying it anyway. I asked about top-end volume for d3 and was told 5k mg so I took that already and will consume at that dose for a few days. Almost no chance on the 02 borrowing, but that's a good thought and I'll try anyway. I'm a very popular patient at a pain clinic I recently started seeing (because I'm one of very few patients who was very clear about NOT wanting opioids - they like that, because they get to practice actual pain management.) so hopefully when I call them on Monday they'll be helpful about the oxygen. I'd call my neurologist but the women who work there are super retarded and unhelpful. 

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5k IU is a low dose of D3, which almost certainly won't help you in the short run (or maybe the long run, either).  Are you able to see the D3 file that we've linked you to?  10k IU/day is pretty much the minimum, but the early "loading" protocol is much higher than that.  It's also important to take all the elements.

You might be surprised to know that a 2-ounce 5-Hour Energy has considerably more caffeine in it that the 16-ounce Monster Zero (or almost any other 16-ounce Monster).  Caffeine is what you're after, plus taurine, so here's hoping . . .

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I've not had a chance to review the files, I certainly will - and thanks for setting me straight on the D3, I got two large bottles so I have plenty. I'll read up when I have a chance, but go in and load up now in the meantime. 

Really, thank you all so much! Two days ago I felt hopeless, today I don't. 

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Also.. apologies in the lack of due diligence, with the current cycle I'm on, plus a 3wk newborn at home, and a 3year old plus I'm back to work now (5:30 leave - 6pm return) - I've not been able to stomach reading time. I realize that reflects poorly on me while here I am asking for help. I'll do my best to follow the links provided and bring myself up to date, and I greatly appreciate the hand-holding I've received. You're all gracious and understanding. Thank you

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We understand the challenge of doing the reading.  The thing about the D3 regimen is that while it's pretty straightforward once you get it, it can be a little complicated at first, and you have to make the decision about the "loading" process, so you have to read and then ask questions if you have them. 

You might have said this already, but do your CH attacks come at night, or typically at a particular time of day?

Remember that welding oxygen is a viable alternative for medically-prescribed oxygen.

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They come typically every 12hrs, on the nose, from whenever the first one arrived. This is the first cycle that's deviated from that, and they've been all over the place. I've had them 3hrs apart, I've went almost a full 24hrs without. Most commonly though yes; the "two hours after falling asleep" time frame has been hitting me, and then again late morning.

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On 29/06/2017 at 8:19 PM, CHfather said:

Did you really mean chocolate, MG?  Wondering because I know that's a trigger for some people.

When C'M gets to processing the seeds, we will definitely refer him to your recipe!

Actually, putting chocolate in with the abortives wasn't the right place. I usually have it after the attack, to help stave off the PTSD and regain some of my energy. Thankfully, it's not a trigger for me, and neither is alcohol. So I count myself lucky in that regard.

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On 30/06/2017 at 5:49 PM, ChronicMigraine said:

...

Moxie: are you sourcing your mushroom capsules locally? Just curious because you're able to know the dosage, and that sounds controlled - I don't have a connection to help with that which is why I'm going to try the LSA seed extraction. Chocolate is absolutely a trigger for me.

  

I grow my own. In fact, I'm suppose to be researching different ways to grow them today, and start a new batch. Guess I best get to that.

I bought a capsule making kit and a 1000's capsules from Amazon. You can get them in 3 different capsule sizes, and I thin I picked the medium sized one. I also have a set of electronic scales that goes to the 100th of a gram (0.00), so I can get a pretty accurate measurement of their weight. I like mine around 0.20 grams, but my housemate prefers them between 0.15 and 0.17 grams. 

It is surprisingly easy to do. Grow the mushrooms (the hard part). I then place them in a large wire sieve lined with paper towels and place over a heater on a low heat. A day or so later, and they are cracker dry. And they need to be CRACKER dry. Then, grind them up in a mortar and pestle. Load up the capsule machine with empty capsules, pour in, tap down, pour in, tap down until you're happy then close up the capsules. Takes a few tries to get the hang of getting the quantity right, but is easy. 

I used to put the mushrooms in peppermint tea, but could not stand the taste. The worst bit, I used to love peppermint tea, but now I associate the smell with mushrooms, and want to vomit when I smell it. Capsules are SO much easier. One capsule a day for micro-dosing, 6-10 capsules for a full bust. 

MG

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A few 'home' aids: Sleep in a recliner with your head above your heart. Stuff pillows around to get comfy. Helps with night time hits.

Stick your feet or yourself in water as hot as you can take. Then heat it up some more when you adjust to the heat. Put something cool on your head/neck. You are opening the blood vessels in your lower body and constricting those in your head.

Put an ice cube on the soft palate area on the same side as your CH and hold it there for a bit. No ice? Some will massage the gums up there to get relief.

Deep breathing with forceful exhale. Get rid of as much CO2 as possible. Inhale as much air as possible. Like a breathing test, Do a crunch at the end of your exhale. Not perfect, but it can actually help. Especially when combined with caffeine.

Breath really cold air. From the freezer or the AC in your car. Stick your nose up to the vent and inhale.

Ginger: As candy or raw root. It is hot!!! Take at the first indication of a hit.

Try the Melatonin. Up to say 25mgs. Take before bed. In cycle your levels can be too low.

I will try to think of some more in a bit.

Don't worry about the reading. If you can't, you can't. The day will come when you can catch up on a lot of it.

Verapamil: It often takes a very high dose to be effective. From 360 (low) to about 900mgs/day. If you are taking say 240, you might not get any relief. Just monitor your blood pressure as you up the dose. It will drop it.

Your doc can prescribe a taper pack of Prednisone. Long term, this med is dangerous to your joints, but a quick taper can be a huge help.

Fingers crossed that the seeds get you on the road to PF status!!!

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Update! 

Thank you all so much for all your very valuable input!

I was able to secure in-home O2 1 week ago, last Saturday. I was able to enjoy immediate relief, it's like magic! I started out with the recommended 15L but eventually as i got the hang of it got down to 10L now. When an attack comes i run 10L for 15 min, and usually can stop there (ive been finding relief as early as 4 minutes in), occasionally i'll run another 5-7 minutes at 8L to full relief. 

I was able to stop using Suma straight away, and went with exclusively O2 (plus the vitamin D regimen, and i also secured a taper pack of prednisone). By Tuesday night i was ready to try to bust using the HBW. I did a quick cold water extraction. I didn't get sick at all (but i also couldnt really follow the instructions here because my seeds didn't have a furry outer shell, they were very rock-like and difficult to grind up. there were no soft spots), but i did have about 6-7 hours of some mild side effects. lasted throughout the night. When they passed and i was able to fall asleep i woke up to a very violent migraine - definitely not a CH, a regular migraine but at the very high end of the scale for those. That lasted about 4 hours, oxygen was unhelpful and i eventually had to succumb to a suma injector. That was sometime Wednesday. 

Since then i have been CH free, I've had a handful of migraines (and possibly some CH shadows, although i've been going to the O2 quickly and often and have found it very successful. I've noticed that with migraines it takes a lot longer to find relief using the O2, at first i thought there was no way it was going to help because of how quickly it works for CH, but sure enough after about 20 minutes the pounding tapers off, and then dispels entirely. 

This past Wednesday i also had my first occipital nerve block treatment - i was concerned that the headache i had Wednesday was related, but since there's been no recurrence since im not as concerned about it now. 

I ordered a fantastic E-Tank duffel bag from Amazon that arrived yesterday, which will make carrying the portable tank around with me much easier and more discreet. 

I'm very hopeful that i can figure out the busting method for the future so that the next time the beast returns i can act swiftly and accurately. I'm also very hopeful that i can finally start tapering away from the use of Suma all together now that i'm finding O2 to be an effective.

With the newborn at home, now that my CHs have died down, i've had to pick up a great deal of regular adulting again and still havent had time to really study the contents of our files here, but it's on my late-night-list for the future. I cant thank you all enough for all the support and hand holding through this last cycle. 

I'll be sure to, and have been, lending my experience to others to pass the knowledge around and i'll keep active here so we can grow the community. SO MUCH LOVE TO YOU ALL! <3 <3 <3

-D

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Nice, nice, nice news!

I'm always interested in seeds . . . How many HBWR did you use?  Did you just grind it up in some kind of coffee grinder/blender?  Would you mind just briefly describing the side effects?

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I used 6 HBWR seeds, they were very hard and solid. i dont know if the place i ordered from already removed the outter shell that was described or not.. I used a mortar and pestle to grind them up.

The effects were a heavy body load, like when you've been drinking most of the day, as well as some light headedness and a tendency to drift off in free thought. some dizziness and unsteadiness when walking. very much like the start of an LSD trip, but without ever reaching the trip. I thought perhaps there was some slight visual artifacts but when i concentrated on them there was nothing concrete.   

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Thanks.  6 is considered a lot of HBWR.  The hard/solid part is the outer shell (the hull); the actual seeds are inside that.  I'm not sure what you got from this dose.  I've encountered HBWR that were solid (not as solid as the shell, but solid) inside, and completely dead. There should have been loose fibers and small particles (the seeds) when you crushed them. A lot of work with mortar and pestle!  Since you seem to have received some benefit and experienced some effects, something must have been going on.  A lot of people find rivea corymbosa seeds considerably easier to work with (and, at least as I understand it, it's the same LSA).

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Do you mean qty 200? (I assume qty means "quantity.")  20 RC seeds wouldn't be nearly enough; starting dose these days is 50 or more, and I'd say most folks get up to 80 or more pretty quickly after realizing that they get no psychedelic effects from 50. Psychedelic effects aren't necessary for the seeds to be therapeutic, but they are a reason why some people like to start lower and see what happens.  Some people even recommend a starting dose of 100 (though I'm not one of them).

 

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