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bob29
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Hi my name is bob i just stated having ch 8 weeks ago. I have been on one hell of a ride since. I have been to er 3 times had a ct scan had teeth pulled and seen a nero once. i am taking verapamil 360 mg a day and zomig some times when the pain gets bad because they are my moms and i cannot afford them. i have a ch most every nite for sure timing is never the same 12.00 to 4.00 am. The ones i get during the day are never the same time and i do not always get them every day. Is this normal! I have had a few day breaks here and there so i am scared and confused. dont know how my cycles work yet is it normal to get a two day break then get hit again. will my cycle ever really stop? i do have o2 now and it seems to help alot. thanks for your time  bob.

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So sorry to read this, Bob . . . hard as it is to believe, you are "lucky" in having received a quick diagnosis, having gotten oxygen, having access to a neuro (if s/he is a good one), and having discovered this board, where you will get lots of help.  You are way ahead of the game, and even though everyone understands why you are scared and confused and how very scary and confusing it can be, you're on your way to taking control of your situation.  Yes, your cycle will almost certainly end--not many people start out with chronic CH (many people don't ever go there--and even chrocic CH can be managed).

Others here will advise you about alternatives to the verapamil.  "Busting" with RC seeds worked very well for my daughter, and we can discuss that more.  You can read more about "busiting" in the "clusterbuster files" section here, particularly in the great files posted there by tommyd.  For now, I would suggest that you consider three relatively simple things:

1. Try drinking a RedBull or other "energy drink"--something high in caffeine and taurine--as soon as you feel a CH coming on (or as soon as one awakens you). That helps a lot of people.

2. I think you should start on the vitamin D3 regimen that has helped a lot of people.  It's generally very safe (though you might check with your doctor) and inexpensive.  In essence, start taking about 10,000 international units per day of vitamin D3. You could take more (some folks take 20K IU per day), but high dosages for extended periods are not recommended. You should take it with food.  You can take it all at once or in two 5K pills (or whatever denominations you can get).  Also take two or three calcium citrate tablets that are formulated with magnesium and zinc (and maybe some other things, including a relatively small amount of additional D3).  The recommended dosage of these is 2 or 3 tablets per day.  You don't have to take them with food, but you can, of course.  And also take Omega 3 fish oil capsules, roughly 2-3,000 mg per day.  Others who are on this regimen also drink a glass of lemonade once or twice a day, with meals.

There are substantial success stories here and elsewhere with using this method.  You can read a great deal more about it in a long, somewhat complicated thread here: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/50

I recommend at least skimming that, because you see success stories and individual variants.  There's also a thread here at Clusterbusters, with less detail but still worthwhile: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1300245052

3. You say your O2 "seems to help a lot."  That's great.  If you're aborting relatively quickly (within 10 minutes or so) with your O2 (which I assume is at least a 15 liters per minute flow using a non-rebreather mask), you probably don't need to hassle with that now (and I see that money is an issue).  Many people, however, swear by the O2ptimask.  You can read about having a good oxygen setup here, and at the end of this file there's a list of where you can order various components, including the O2ptimask (I will add the note note that increasingly, evidence is showing that higher flow rates of 25lpm or more result in quicker aborts, though as I say this might not be something you have to worry about now.)  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

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Welcome to cluster busters bob. Sorry to hear you have CH. Sounds like you got an official diagnosis from your neurologist. You have found a very special place where there are wonderful people experimenting with a promising treatment. Others with much more wisdom than I will soon reply to your post. I recommend reading as much as you can here as well as learn as much as you can about cluster headache by researching on line. I was diagnosed with "cluster variant" 18 months ago but I have come to learn that I have what's called Hemicrania Continua. Based on what you describe, sounds like cluster to me. Good thing the 02 is helping. Stick with it. Hang tight brother, help is on the way.

Scott

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I would like to add that, for the first time in 18 months, I am getting measured relief with a regimen of Fish Oil, Melatonin, Scullcap tincture, and I just started D3 today. I am not on any prescribed medication at this time. For me, this is amazing. I plan to bring in Licorice Root this week.

There is hope for you bob. Hang in there and learn with the help of this board.

Scott

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wow this is great thanks for the input. is there anyway that i can tell that my cycle is ending. where do i get rc seeds, are they morning glory seeds? how many do i need to consume at once, how many times, what is the best way to take them. do i need to be off of other meds. thanks bob

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Bob, in order to use RC seeds (rivea corymbosa--not morning glory) it is believed that you have to be off the other meds for at least five days.  That's why you want to be sure that your abortive systems (oxygen, RedBull, maybe ice packs or other strategies ...) are working as well as possible for you.  I'm not familiar with Zomig, but if they are pills, they probably aren't helping you much.  It's the verap, which might be helping, that might be hard to let go of.  And you really should try the D3 regimen, which might make a big difference in making your symptoms tolerable or maybe even eliminating them (and you don't have to "detox" from other meds to start on the D3).

Results from RC vary widely from person to person.  We just saw one person become pain free (at least for some period of time) with what seem like "small" doses -- one of 11 seeds and one of 15.  For others, it takes more seeds and more doses.  Doses are recommended to be at least five days apart.  Here are some places where you can get seeds:

http://www.ethnobotanicals.com

http://www.iamshaman.com

www.psychoactiveherbs.com

www.shamansgarden.com

But you gotta do some reading and research on your own, because you have to take responsibility for this treatment.  Here's one of tommyd's files -- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130612

There are others there in the "Clusterbuster files" section that you should also read (for example, the one with the title "LSA" -- LSA is the "busting" ingredient in RC seeds).

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Bob,

Two things I'll add:

1. Don't discount doing all the reading and research you can. Yes, a bunch of us could give you advice on what we've done and you could try it, but knowledge is empowerment. The more you learn about this monster, the more it puts YOU in charge. And being empowered to kill this thing (or at least knock it out know and then) is a great feeling, and much better than simply listening to a bunch of people saying "take this" or "try that".

2. Les Genser articulates this point much better than I can, but I can not stress the importance of this enough: your doctor can not write a prescription for anything that will treat your CH. It's a sad and shocking fact, but it's reality. Verapamil, Imitrex, Prednisone cycles, you name it. . .they're all hand-me-downs being used off-label, they don't treat the core problem, and the side effects are awful.

My best advice is to start with a pure, clean sample. Get yourself off of the pharmaceuticals. Find an abortive that works for you to help get you through the detox (sounds like the oxygen is already working for you, so that's good). Eliminate all of your known triggers (Alcohol? Tobacco? Lack of sleep?) Then, start trying some of the regimens suggested on this site and others. Personally, licorice tincture toned my CH way down, then I went to the seeds for complete relief (that process is still in the works, but so far so good). You may find relief with this, or with the D3/fish oil regimen, or with melatonin, or busting, or you may discover something totally new that works. The key is to know what your melon responds to, what makes the beast tick, and how to kill it. Good luck, man! Lots of good info and good people here to help you.

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Thanks, How much melatonin should i start out taking? I just got everything else d3 fish oil cc will start that asap.

i got rc seed today, need to clean out system to start the seeds. I weight 180 lb so how many seeds should i start with. I'm not sure about getting clean yet i work 100 hours a week and need to sleep as much as i can and the verapamil has seem to cut the pain down on the ch. This is allot to take in all at once i have been very healthy up to this point i really hat the side effects of taking the verapamil tired,hands shake ,nite sweats are very bad wake up soke and wet almost every nite. :'(

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Bob, your body size doesn't really affect how much RC you should take (since it works in your brain).  And the fact is that no one really can predict how much LSA (active ingredient) you'll get from any given number of seeds, because the LSA content of seeds can vary quite a lot.  What is known (obvious though it is, it's worth mentioning) is that people whose CH doesn't respond to seeds usually have taken too little.

On the other hand, too much of it might cause psychedelic effects, which most people do not desire--they're looking for treatment for CH, not a large or sustained "high."

So, you have to go by feel.  Many people start with a small dose, maybe 10-15 seeds (fully ground up (most typically with a mortar and pestle) and soaked in water for an hour or two). Some people get CH relief from doses this small.  Others work their way up to 50, 60, or more seeds. (My daughter, who weighs about 110, uses 60.)  Even at those larger levels, you're not likely to experience more than the equivalent of a two-beer buzz.

So I would say -- others please add your opinions! -- that you might start with 20 seeds, as long as you are comfortable with the (very remote) possibility that you might experience some psychedelic effects, and therefore you are attentive to the usual issues of set and setting.

Many people experience "post-dose hits" in the days after their first dose or doses of seeds.  Those can be more severe than the person's typical headache, and/or they can come at odd times, such as during the day when typically they get them at night.  They indicate that the LSA is working--but they still hurt and can be disconcerting.  So be sure your aborting ducks are as lined up as possible.

I hope this helps--and I hope others will correct any errors in what I've said and add their own insights.

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ok make sence how about the melatonin?

consensus is that we are not positive if it interferes with or busting regimens or not, there are a few things that we know interfere : opiates, steroids, and other triptans (imitrex/zomig)

we are not sure on verapamil or melatonin if it interferes. thats where you need to find out what works for you as far as busting goes

melatonin is strange, some people receive no benefit from it, others find it very beneficial, and even some say it (melatonin) makes the CH worse like myself

also to add there are different types of melatonin. from my understanding the difference is how it was harvested. and it may take up to 2 weeks to take effect. also one should not use it every night. there has to be breaks after a month or so of using, or your body will depend on it and not produce its own melatonin since u are substituting for it

there really is no stone written directions here, there are many thins to try and researching our files and reading posts will provide the info you need to make an appropriate decision on your next actions

remember that what works for one may not work for another

keep reading keep asking questions, everyone here will help you or point you in the right direction

be well and stay strong

AO

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A brief addendum re: dosing.

There is a differentiation made when discussing hallucinogens between psychotropic effects and psychedelic effects and it is completely dosage dependent. Think of it as identical to having one cocktail and getting a buzz as opposed to having five and getting stupid drunk.

For those unfamiliar, do not be afraid of psychotropic effects. Most people will just experience minor changes in color perception and things seem unusually funny. By no means does this level of dosing interfere with cognitive function or your usual self-preservation mechanisms; while you should absolutely not attempt tasks you would not do while drinking (unless you are Doc Ellis), you will not attempt to fly. It is really quite pleasant.

My purpose in bringing this up is to extend the point made by Jerry above: Home chemistry being what it is, you will only be assured you have an adequate level of LSA if you actually feel it, but working up to that level requires experimentation.

Your description of night sweats indicates to me heavy hypothalamic disturbance.

If it were me, I would try busting early in the day, 8 to 12 hours after I would start licorice root and skullcap (which eliminate night hits for many people and may seriously cut down post-bust hits; I can't try this myself as I am PF); and I would hunker down optimistically with some abortives and see what happens.

Verapamil is worthless and it will hurt you. In my opinion, melatonin is as useful as HeadOn. Also, not just my opinion, most physiologists are highly amused by the concept of "mega-doses" of literally anything, and inadvertent damage can be done so be careful.

Good luck.

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