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tomboy101
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My aunt and my grandmother both have cluster headaches. It's scary sometimes because my aunt is like my best friend and I love her and my mamaw is the rock my whole family holds onto when things get bad and if she breaks then we all break. I spend the night with my aunt when her husband is away for work. It terrifies me when I wake up in the middle of the night and see her curled up on the bedroom floor crying. If I could take it from her for just a little while I would. She has two young children and they just don't understand why this happens to their mommy. I've seen her beat her head against the ground and cry and scream and I feel so helpless. Her arms are bruised on both sides from the shot she takes every night and day. I'm scared that she is really going to kill herself if she doesn't get some relief soon. It's been three months since she's gotten more than a couple of hours of sleep. She's scared to close her eyes. Sometimes, at her worst, she even tells me that she wants to shoot herself just to take the pain away. It scares me so bad. She has a husband and two kids to think about but that doesn't seem to matter when she's in so much pain. I just hug her and rock her side to side and tell her that it's going to be okay even though I know it won't. It will happen again in a few hours. Day after day, night after night. She's burned out and I'm worried for her. :(

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tomboy, that's a terrible, terrible story to which everyone here can completely relate.  and we know how to change it, pretty quickly, to a very different story of wellbeing and hope.  none of this kind of pain, maybe never again.  i'm not saying they'll be cured, but life will be completely different.

i guess i should say that it definitely sounds like cluster headaches, and you say they have it . . . do they have a firm diagnosis from a doctor?

first thing is that they don't seem to have an oxygen setup, which is the #1 treatment for cluster headaches.  for 90-plus percent of people, oxygen will stop CH attacks within 15 minutes.  you can read more about oxygen here -- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 -- but the main thing is for them to get prescriptions for oxygen, or to get it on their own.  so you need to get back to us -- or get them on this board themselves -- about why they don't have oxygen (never been prescribed for them? "tried it" but don't think it works?).  do they have confidence in their doctors, so that they could go back to the doctor and request -- demand -- oxygen.  do they have medical insurance (this is not necessary--oxygen can be obtained without a prescription -- but it's good to know)?  like i say, if you could get one of them on this board, it would be good.  you have done a great deed for them by coming here.

they could also start right now trying something that has helped many, many people with CH, is inexpensive, and uses ingredients that can be found at any decent drug store or place that sells nutritional supplements -- probably in a grocery store.  Take the following every day: 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 few days.  The levels I listed above are the "default" levels--they might wish to adjust according to their tolerance.  These are not "megadoses"--all are within standard recommended daily allowances except the D3, which is high but not inordinately so.  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

Since doing this D3 approach is almost certainly harmless (though they could check with a doctor) and inexpensive and effective for many people, they really should start it right away.

In the short run, they can also try using "energy drinks" at the first sign of a headache.  RedBull and Monster are two popular brands: the main thing is to get plenty of caffeine and taurine, which those drinks contain.  For some people, catching a headache early and chugging down one of these drinks can stop a headache or keep it from getting worse.

The major anti-CH strategy here, after oxygen, is "busting" with mushrooms, seeds, or other substances.  They should come on here themselves if they want to try that kind of treatment.  Lives -- including the life of my daughter and of many people here -- have been saved by this method.  If you want to know more about it, you/they could read the series of posts by TommyD in the "Clusterbuster files" section of this board, probably beginning here -- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 -- and then going on to posts of his.

We are here to help them, and if necessary to help you help them.

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Your Aunt and Grandmother are very lucky to have you, Tomboy. So many people suffer with these damn things who have no one; no one to advocate for them like you're doing now for your loved ones. CHfather gives great advice. If you follow his suggestions, your Aunt and Grandmother will very soon be in a much better place. Good luck to all of you. Things will get better. I promise.

Ron

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Uh oh, sounds like your aunt and grandma have probably been getting all of their treatment info from doctors.  :o

This place is riddled with CH'ers and their supporters who know all too well that what the medical establishment has to offer can be one big prescription for a tremendous amount of pain.

The fact that you've stopped in here could very well be a huge turning point for your beloved aunt and mawmaw, one in which I know you'll be very happy to have played a major role in, tomboy.

As Ron said, CHfather laid a motherlode of priceless info on you, and I think it's important to re-iterate this part:

we know how to change it, pretty quickly, to a very different story of wellbeing and hope.

And this:

Lives -- including the life of my daughter and of many people here -- have been saved..
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Welcome to the board tomboy, as you can see there are many people around here that can help you with helping your aunt.

This story makes me feel sad also whilest there is something that could help her very much. No one should suffer that much.

CHfather does give you some good information. Hope she get's relief with that.

As you can see you are not alone, there are always people here that can help you with your aunt.

Wishing you and your aunt the best.

Oscar

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Thanks for the great information and support you guys!! <3 It helps a ton to hear from other people who are going through the same things as my family.

CHfather: Wow, that's a lot of great advice and suggestions. Yes, the doctors say that they both have cluster headaches. My mamaw has Chronic and my aunt has Episodic. They both have oxygen tanks but it seems to help my mamaw more than it does my aunt. (Or maybe she's just better at hiding it until it's over, I don't know) I'm going to share some of these things and see if they will give it a try. Thanks a lot! :)

Bonkers: Thank you sooo much! It feels great to hear (read?) that. I really hope they get better. Yall's support is great!

Bejeeber: I've lost count of how many times they've both gone to the doctor. My aunt has been on multiple combination medicines. (I can't remember all the names.) None of it helps so maybe this other stuff will. It's worth a shot. Thanks again!

Oscar: Thanks for the good wishes! In a weird way it does make me feel better to read about other people who have them. It makes me feel blessed to be a healthy 17 year old girl. It also makes me feel a little less helpless about the whole situation which is great.

Thanks again you guys!

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t'boy, a lot of people have oxygen tanks but they don't have proper equipment.  they don't have regulators with high-enough flow rates; they don't have non-rebreather masks or they don't use the masks properly.  these days a lot of people are getting great results with higher flow rates than what i describe in my file (25-plus liters per minute) and with specially-designed masks and improved breathing techniques  you can see pictures of some of the items, and read more about the "advanced" or "power user" techniques at this very helpful file: http://www.clusterheadaches.com/O2/index.html

if you can't get them to come on here and talk with us, can you take a look at their setups and see if they have regulators that go up to 15 or more and if they have the kinds of masks pictured in that file i just mentioned?  getting proper oxygen setups can make a huge difference.

in case they already have the basic equipment and are using it properly but not getting good results, they might want to try the "power user" approach.  i'm not a power user -- i'm not an oxygen user at all; it's my daughter who has CH, and the "regular" methods have worked very well for her -- but there are power users here who can talk them through how to use oxygen more effectively.

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T'boy I wouldn't be at all surprised if your aunt has been prescribed low flow, rebreather O2, which was cutting edge in the 1970's. Unbelievably doctors generally are still stuck in the 1970's, not even realizing that the high flow, non rebreather O2 method of administering O2 is so much more effective.

There are rare individuals for whom O2 doesn't do much, but I'm hoping your aunt is about to see a major improvement as she steps into the O2 big leagues.  :)

And if your mawmaw isn't getting that consistent of O2 results, hopefully the same for her too.

There are chronics in your mawmaw's age range who have busted and gone into remission BTW.  8-)

I think you're transitioning from feeling helpless to being extremely helpful.  :)

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I told my aunt about some of the things I read on here. When I told her about chugging the energy drinks she laughed and said, "Hey that's cool.  Instead of getting a six pack of beer I'll get a six pack of Monsters." It felt good to hear her laugh again. As for all of the oxygen info I'll take a look and see if they have the right kind of things.

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t'boy, you might also mention to her that for lots of people, beer is a "trigger" -- it brings on CH attacks!  other kinds of alcohol, too -- but beer's definitely a big one.  of course, i imagine that she would already have noticed the connection if beer is a trigger for her (thing is, it's generally not a trigger for an episodic like her when she's not in a ch period, but it might be when she is).

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From someone who was in their shoes  for years. Mushrooms saved my life. Call me...no joke. I really want you to call me. I have secret than can change lives. 

. Save lives

So does Bejeebers and bonkers and the rest of of the group. I am alive because of my friends here and because of this site.

My number Is 325-518-9046

My wish is that I get a call from you. WTF do you have to lose? I am a nice guy trying to pay to forward. Mushrooms saved my life...PERIOD. I  want help.

Take a leap of faith. Call me

I am paying it forward. Simple as that ;)

Dan

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Will fresh shrooms work?

Frustrated going to look in the woods for shrooms since I can't seem to find them anywhere on the street. I hope I find the right ones :-[

I am so desperate. I was ready to fly to Amsterdam but I just read they are illegal there now. It is so horrible that there is something out there that will help us and it is illegal and impossible to find.

(Episodic Sufferer since 1990)

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Jennifer

Yes, fresh picked specimens will work!!  However, unless you have previous "pickin" experience, please don't let your desparation lead you to bad judgement!!!!

And, if you were prepared and had the means to go to Amsterdam, there is a thread here on the board about a little shack down in the islands for a "midnite brew".....I'll search for it and post it for you

Dallas Denny

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Hi Jennifer,

Here's the link to the Bomba shack topic that kindly Dallas Denny is rooting around for (I keep a hot link to it handy now  8-)):

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1297450426

The Bomba shack is in Tortola, which is across from St Thomas. Mushrooms are legal there and last I heard, available for purchase.

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Rest assured that your desperation is very much understood Jennifer. Have you considered yet ordering some Rivea Corymbosa seeds (legal to order and possess) to try busting with while you continue your search for reliable, non risky mushrooms?

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Thanks Matt!!!  I was gettin no where with that deal!!!

Ha, yes I know from protracted experience that the Bomba link is NOT easy to dig up.  :D

It is so horrible that there is something out there that will help us and it is illegal..

Agreed.  >:( :(

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Rest assured that your desperation is very much understood Jennifer. Have you considered yet ordering some Rivea Corymbosa seeds (legal to order and possess) to try busting with while you continue your search for reliable, non risky mushrooms?

Yes, I have tried the seeds and was successful busting my cycle last year, but has not worked this cycle thus far. I have a new batch on order as a backup

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I had a similar experience with seeds stopping working for me Jennifer. If I had it to do over I would crush them either with a mortar and pestle, manual pepper grinder, or the old "put them in a freezer bag and hit them with a hammer"  method, since I've read here that those methods are supposed to be the least damaging to the active constituents.

I'd probably try a higher dose than my usual 50 seeds too, not that I recall anyone actually recommending that here.

Hoping and praying your mushroom quest will bear fruit SOON, because when I switched from RC to shrooms, the shrooms did work for me. 

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I am so desperate. I was ready to fly to Amsterdam but I just read they are illegal there now.

Jennifer I can tell you Shrooms are illigal in the Netherlands but there are legal Psylocibin Truffles. As they are not fully grown Shrooms but grow beneath the sand they are legal.

They work the same as shrooms and are availeble in 4 strains.

http://www.sjamaan.com/en/1863_Magic_Truffles_-_Psilocybe_Atlantis_-_1_unit.html

Oscar

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