Odin, history and greeting

[Odin]

Hello All,

I have resisted joining for a long time.  I live in Georgia, I have had CH's since 1997.  I am at my wits end.  My CH cycles last a few years with several off in between.  I have a good Neurologist and have tried everything.  A member helped me in the fall with an "alternative TX".  I had good results.  I think I somehow upset him.  When I am in a cycle, knowing I have several years to look forward to, I do undergo some personality changes.  I probably come across as rude sometimes, but that is definitely not my intention.  I am a Captain in Public Safety.  I have not been to work in 4 weeks.  I am married with many children.  The CH have ruined my life.  I told the Neurologist many years ago that the only way I could describe CH's was that they have stolen my soul.  I don't know any other way to describe it.  I have really tried everything.  O2 doesn't work for some reason.  My CH's typically last 45 minutes with 4-12 attacks a day.  Sorry if I ramble. I don't know what my point is.  I am open to anything and wish you all well. I would like to thank everyone for their research and risk.  I was glad to see the special on Nat Geo.  This has become a difficult burden to carry.  I have to be honest I feel pretty hopeless at this point.  On top of my CH's in the past 10 years my daughter has had kidney surgery and massive open heart surgery, my son was in a near fatal car wreck and was on a vent for a month with massive facial reconstruction.  Thankfully both are doing well now.

[CHfather]

That's rough, Odin, very rough.  So sorry.  It's hard to know where to go when someone says they have "tried everything," since this can mean they've actually tried everything (which is a whole big long list of stuff), or that they've tried so many things that didn't help them that they're really not interested in trying anything else.  That happens with a lot of people with CH.

So here are two basic things, although there could be several more.  The first is the standard question about oxygen: You have tried it at high flow rates?  You have an O2ptimask?  You've tried a demand valve?  All of those things have made a difference for many people for whom oxygen didn't work at first, or had stopped working.

Second, I'm not sure what an "alternative TX" is, but I assume you're referring to a busting substance.  If you now don't have access to that particular substance, which you say helped, how about buying some RC seeds and concocting your own?  Inexpensive, very simple, and very effective more many people.  Here's an introductory file that you can read about that, and then you can always ask more questions if you want to:  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

But maybe RC is on the list of things you've already tried.  If not, I'd recommend seriously considering it.

[tingeling]

Hi Odin

Welcome to us, your sec family

I don`t know what to say, you probably lived my life twice in age and sevral times more in experiences. But i can say we have the same experience with CH and how it makes you feel trapped, reduced to a shadow. I know.

Fortunately, you can do something about your CH. Very happy you did sign up. This board is turning point in your life. We are here to help and support each other.

Could you tell us what you tried and what meds your on now, if your on any meds?

PainFreeWishes to you

Tingeling

[Bonkers]

A member helped me in the fall with an "alternative TX".  I had good results.  I think I somehow upset him.

I find the above puzzling. Just guessing here, but it sounds to me like one of our members supplied you with something - alternative TX - which you found to be effective against your CH. The two of you had some sort of falling out and your access to 'alternative TX' was cut off. Since you've found nothing else to be effective, renewed access to that material would be a good thing. Is that about right?

I don't know if we can help. First off, we need to know what that material was. Then we need to know what other things you've tried that are mentioned here. If there's no possible way that anything else might work, we'll see if we can find a way for you to get some more of what did. Sound good?

Welcome. Glad to have you aboard.

Ron

[Odin]

Thanks everyone for the responses.  I really have tried everything med-wise.  I'm not taking anything now.  I still go to the Neurologist every few months.  He actually has really pressured me to do this.  As far as the other member, he was a super nice guy.  He really just didn't have much access and I think shared with me.  I definitely have no complaints with him.  I tried HBWR years ago but it didn't seem to work.  The very limited experience I had with Psilocybin seemed to make a real difference.  From reading on here I understand it seems dose dependent and involves the indole ring.  I had very limited success with melatonin, meaning I slept a little more.  I apologize now, I am very paranoid and leery of forums.  My MD assured me not to be.  I'm usually not like this, but the deeper I get into a cycle the weirder I get.  Living in Georgia makes my situation frustrating.  As far as the O2 I really have tried every way possible.  Being an EMS Captain allows me access to O2 and all the attachments.  I prayed this would not come back, but it did, after a pretty long remission. I have dropped from 212 lb.'s to 165 lb.'s in a few months (6'3").  Obviously, I don't sleep much, no appetite and pretty deep depression.  Sorry for the whining, I generally keep to myself.  It's almost funny my family will not even say Cluster if I'm not having them and I'm real superstitious about saying CH if I'm not having them.  It really is amazing the affect they have on the psyche.  I can't relate to anyone at this point.  It really alienates you.  For example I can't talk about it at all with my best friend of 37 years.  If I try to, he attempts to explain to me that it must be psychological and compares it to his "psych" issues.  Also that it's just a headache.  I have a hard time controlling my temper anymore.  I'm just no longer the same.  I do think it was a serious mistake, on the medical communities part, to ever even call these headaches.  I understand the reasoning but it gives people the wrong idea about what people are dealing with.  Anyway, after that rant.  How are y'all?

[alleyoop]

Hey Odin,

Check your PM's.

[Bejeeber]

Hey Odin,

Sounds to me like you may seriously want to get back to that *vitamin M* that helped you last time. It sure has done the trick for me and many others (including Georgians) and we talk about it openly here all the time, although if I remember correctly the Share Your Busting Stories forum is more secure for discussions.

Your situation sounds plenty bad alright, but the fact that something has been shown to work, something nature provides that grows right at our feet for cryin' out loud, makes it appear as if there's a light at the end of the tunnel, and this time it's actually NOT the usual oncoming train commandeered by the beast!

[Bonkers]

Well, let's see now. You "tried HBWR years ago but it didn't seem to work." HBWR seeds are difficult to prepare. Most here use RC seeds instead; they're much easier to prepare and the dosage is easier to determine since instead of using 3 or 4 seeds of HBWR, you use 25-75 of RC. They're cheap, readily available via the internet and for some, are more effective than psilocybin.

Psilocybe mushrooms are the battle weapon of choice for most folks here. THEY ARE ILLEGAL. But, they're easy to grow and the spores are available from several sources on the internet. The spores ARE NOT illegal except in 3 states (I can't remember which ones).

LSD is difficult, but not impossible, to find. It just depends on where you live and who you know.

There are lots of other things here that many, many people have found helpful. Please read (especially the ClusterBuster Files) and ask questions. You will find something or several things here that will help. I promise.

Ron

[alleyoop]

The spores ARE NOT illegal except in 3 states (I can't remember which ones).

Those 3 are: California, Idaho and Georgia.

[Bonkers]

OF COURSE!!! Psilocybe spores are illegal in California, Georgia and Idaho. Not an insurmountable problem. Someone you know in another state can mail them to you. I live in California and that's what I did. Sorry 'bout that.

Ron

[alleyoop]

Hey guys,

Just for clarification purposes, I am the one that Odin is referring to.  And I did drop the ball.  It was due to a number of reasons, but the point is it was my fault. 

This guy is nothing short of amazing!  He saves lives on a daily basis. 

Those of you who know me, also know that I personally, am not able to help him out, other than point him in the right direction.  You guys have done a great job of helping him so far; and I am sure that you will continue to do so.  Thank you CHF, tingling, Bonkers and Jeebs for being there for him.  You guys rock!

bobb

[Guest]

Wished I could help more but.... Hope you find a treatment that works for you. I start with the little hammer first...seeds. Bigger hammer...shrooms.. but hey thats just me. Sometimes I use both....shrooms then 5 days later...seeds. That usually hammers em.

all the best

the bb

[razorPP]

Odin,

hang in there brother, with a little time the good folks here can get you to a better place. check out D3, meds were not effective with me, but RC seeds, o2, d3, exercise and a place like this that understands us helps, peace

[tingeling]

If you call this ranting you should have met me on a bad day. Sometimes i wondered if i was a total psycho, concluding (or hoping) that if i was i wouldn`t be wondering about it So don`t worry, we`re all the same in here Please, don`t keep it to yourself, we are here for you to share it with us

[damiano]

Odin,

I hope things get better for you really soon. I was in the exact same position you are in now about 3 weeks ago.

I will admit that I too can be a real a%#hole to be around when in cycle. In fact that is what led me to here. My wife, my kids, co-workers, could see the change in my personality big time and would tell me I am a grouch and so many times I wanted to turn around and say to them why don't you try to live off of 1 hour of sleep for 8 weeks and then tell me how you feel. Never the less, I used to come to this site and look at it and read the stories here. I didn't give this much thought at first in the past.

However now that I have gotten plenty older and the cycles are coming more frequently than ever before and hit harder like never before, I decided to take this plunge. Here I am writing to you today to tell you that this works. A few weeks back I could no longer take it any more and decided to give it a go. After the very first dose, I was amazed at how well this started to work, there have been some small setback along the way one of them is known as a "slap Back", it is not really a setback but an expected result for most of us after out first dose. It was the worst one I have ever had and it lasted for damn near 3 hours. Since then a few shadows and such and I actually did have to dose again last week, but I am actually at work now and haven't missed a day since my first dose.

I am actually able to sleep all the way through most nights now. I thought to myself there comes a point when all the meds that the doc's put us on being used off label cannot be healthy for us at all. It was scary for me all of the meds I have been on with a family history of heart issues. In fact my grandmother passed away Friday night from complications due to heart attacks. So I became very wary when I went for my last EKG and the doc cut the verapamil in half because of my heart and I am a pretty healthy guy actually. So it was scary for me to continue on the meds. I came here and have been welcomed and the people on here are like another family.

They have guided me into a state of being PF for a few weeks now and have not led me down the wrong path yet. I do have a few regrets - and that was not reading everything on here and I mean everything - the cluster buster files will be good for you to read. The other regret I have was not being open minded about this years ago when I first saw this and just suffered through the pain, The other reason I decided to do this was seeing Dan on the National Geographic program. I dint care if it was against the law any more or not, I could no longer take the pain.

I started a thread to chronicle my journey with this and it is a link called "I started busting last night".

I think when you get to the point where the pain is so bad and you feel like drilling a hole in your head or putting a bullet in it, and you are starting to lose those around you, then being open minded to alternative treatments might be a good way to go.

I hope you feel better soon. If you can and are willing to end the pain - I would certainly tell anyone I come across that suffers from this, to give it a try. If nothing else you will know if this med is for you.

If you are willing to give this a go and can acquire the proper meds - there are many people on here that will help guide you and give great advice. By the way, I haven't had any pharmaceuticals in about 4 weeks now!!!

[Bonkers]

Wow!! Awesome post, damiano. I wish every CH sufferer in the world would read it.

[damiano]

Lol thanks Ron...