According to the Cleveland Clinic neurologist I'm episodic but if you read my journal you might agree with me to disagree with them.  I just got through an attack with my steering wheel of my truck being a result.  I was only going to be gone 45 mins but I guess I should know better than to ever leave my o2 even for a minute.  I'm not filtering anything but language in this post.  There are scars in my vehicles and all around house for past attacks.  This is what I call when I "lose my composure".  I've watched plenty of youtube vids and I can tell they are going through the same thing but there are many differences.  You would think I would try an ice pack before I punched myself in the face so many times it took three days to open my eye but, first off, cold makes it worse(stupid Ohio) and to touch anything to my face (even my o2 mask at times) only encourages the beast. I've slammed doors on my head, pulled teeth, prayed to god, cursed god(and I'm not even sure I believe in him), rammed my head into trees and not only thought about suicide but can vividly describe how I'll hold the gun if that day comes.  Which is why I'm coming out like this.  I'm very new here so please forgive me if I offend anyone but something about this site tells me I won't.  My first night with the beast was in '05. Diagnosed '09.  Found a fellow cluster head almost two months ago and finally some true help and understanding.  No doctor should be allowed to claim they understand ch if they let you walk out of their office without telling you about this web site and all the wonderful people here.  When someone turns over their guns to their parents before they even know what's wrong with them I feel a little more help is needed than a bottle of pills and a pat on the back.  I'm sorry, just had a bad experience with the medical field.  This site has done more for me in 7 weeks than any medical professional did in 13 months, and trust me I saw plenty(without any insurance).  I wish I could take every penny I spent and give it to OUCH.  But now I'm broke, almost maxed one of my dad's credit cards(that's twice that man has given me life, he pays for most of my o2) and now with 2 to 7 hits a day, every day, it's become quite the challenge to hold a job.  If I have to follow a strict schedule or get written up, well... there's just no reason for me to apply.
    Now I've already gotten some good feedback but the purpose of this is to try to find someone who relates the most to my situation cause I'm on this thing almost every day and have yet to here my story.  I'm not trying to brag or compete for who has the worst story.  Why would I compete for something so horrible?  I'm just in a very bad place right now.  I'm not looking for a cure all either, I've only been living with this for almost 5 years but that's more than enough time to know not to disillusion myself.  I,m just going to tell a little more of my story and hope someone has gotten out of this, even if just for a week, and will share how and hope the same works for me.  o2, man I wish I knew about that sooner.  Verp. and Depicote, I won't knock it to much cause it apparently works for a lot of people but 13 pills a day, every day, for 13 months with little to no relief, just not feeling it.  I was given 2 trex shots but only being able to use two in 24 hours I don't see the need to tease myself until it stops me from pulling the trigger.  I've even, recently, done some bustin.  Better than the pills but still hit daily.  That's actually what I want to talk to someone about but I'm not sure what I'm allowed to type.  I've drank enough Red Bull(with much relief) to give myself a lower g.i. bleed(poop blood).  I have taurine supplements in the mail.  I could build the Eiffel Tower with the Ibuprofen bottles I've emptied(another contributor to the the lower g.i. bleed).  Cold hurts, hot helps(sometimes).  You can't touch me.  I was walking with the beast one day and a leaf fell from a tree and brushed down the side of my face, dropped me to me knees.  I'm a 6' 2" 200lb skateboarder in great shape. Bringing me to my knees is not an easy task, especially with a leaf. I'm all left side by the way.  I can't watch Lord Of The Rings any more because, until I was introduced to this site, Golem was the only thing I could relate to.  I've stopped talking to my friends, distanced myself from my family my girlfriend of over 7 years left.  My only companion(again, until dragging myself to your door)was the devil.  Am I evil, or is that what we have in common.  A greater purpose, unknown to us, with a f#*&!%d up training program.  I've been in jail but I've also pulled my car across three lanes of rush hour traffic to help a women and her child push their broken down car off the road.  I don't want a medal I just think this out ways my sins.  I'm here and even if they stop tomorrow(which we all know better) I'm not going anywhere.  I promote(with great help from my sister) awareness everyday.  Any feed back is graciously welcome.

Buzz-Hog wrote on Mar 10^th, 2010 at 12:09am:


First off, I agree with Brew about the Redbull not being the cause of bloody poop.

Buzz-Hog wrote on Mar 10^th, 2010 at 12:09am:


Well, I think the Cleveland Clinic is probably right.  You are not chronic, you are episodic.

I agree that it was the ibuprofen but I haven't taken any in more than a year.  The blood just came back since I upped my Red Bull.  I'm not knocking it just trying to make connections.  And that's what I want to know.  Yeah I had 3 months off a few years ago but now that I've gone almost 2 years getting hit everyday, am I still episodic?  I ripped my steering wheel almost to pieces today so I am in a bit of a mood but still want any replies but please put more info so I can understand.

my advice is find a dr. who knows his shit. and to try get o2.
Check out Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
and read the newsweek article that is posted.
Read all you can on here, these folks know what they're talking about.
If redbull is fucking you up, buy taurine from gnc and drink coffee. maybe that will help.

buzz-hog, check your inbox. your sister is awesome bro.

I had bloody stools a few years ago when I was 48 yrs old. A colonoscopy was set up and found a large pre-cancer polyp that was removed then. The blood stopped and my life may have been saved.

CH is very hard to deal with but it won't kill us. Please see your Dr about the bleeding.

Good Luck, Don

You didn't mention how much Verap you are taking.  Could be you aren't getting enough to do the job.  We talked about Kudzu the other day, and I PM'ed you my phone number.  Feel free to give me a yell.

Jerry

Buzz-Hog wrote on Mar 25^th, 2010 at 5:22pm:


Serious question.

So what will you do if it gets bad?

You are definately not alone my friend. Read more.

There are many here who get hit at the highest extremes and more than, 8,10,12 times a day every day, every week, every month, every year. Thats basically a few minutes every day without physical mind blowing pain.

The more meds one takes the worse it can get. Trial only one at a time. If oxygen helps (I never had the luxury) use that as your primary abort untill a treatment is found.. Less mixing and better results. Though a few proven formulas exist for some.

It seems too often many Cluster Heads will take whatever they can get there hands on out of desperation (been there done that). Each time a new med is taken it can be days before results are seen and the body begins to balance out
Whether it be CB treatments or conventional meds each time one changes the meds the attacks can restart with renewed vigor.

I've only had these things for 35 or so years and only 3 things, out of probably hundreds tried ever helped me, one is Clusterbuster medications, one is very high doses of prednisone above 160mg (not reccomended) and the other is too new to be sure but I am pain free for the 1st time in a long time and thats cinnamon.

So you see its not allways the strongest meds that help sometimes its the simplest of herbs. Like Kudzu for some.

The biggest helper of all has been acceptance. Its what we have and we must learn to deal with it regardless. I spent 10 years med free because that was the only way I could deal with it untill CBs

No point in beating on the truck and the trees they did nothing, allthough it sounds as though they are kicking you around better than you them.

Welcome. I live in Cincy and also just recently discovered this site.
I'm sorry to hear that you are having such a hard time. I hope you find relief soon.

Arde wrote on Mar 26^th, 2010 at 9:37pm:

Three, including the one who started the thread. I guess that could be considered disproportionate, seeing as how people from all over the world belong to this site.

Population-wise, Ohio is the 7th largest state:

1. California
2. Texas
3. New York
4. Florida
5. Illinois
6. Pennsylvania
7. Ohio

Also...Buzzhog, if you are looking for someone to have your exact symptoms, you'll be looking for a long time.  One of the themes about our condition is that no 2 people have the same cycles, meds that work for one, may not work for another, etc.  Then you can add into that equation that the beast likes to morph all the time.  What worked for one cycle fails the next time.

     This condition requires us to educate ourselves and then try one thing at a time to see if it works.  If it does not...we go on to the next.

    I thank everyone so much for taking time with my post.  I will admit that I was hoping for someone to say this is what happened to me and here's what I did.  I should have known better because it was years before diagnoses that I said allowed, "something that eased the pain yesterday might make it worse today". 
     Now something I should have put in in the beginning is I keep an accurate daily journal of all accounts.  No new treatment tried is overlapped.  Even when something doesn't work at all I give as much time as any research I had done before trying it recommended. 
     If anyone doubts my commitment to this well I just don't have anything to say to you.  And I'll take all doubtful comments in stride if you would just include more info and explanation for my understanding.  I am here for the understanding and compassion that is necessary to live life with ch.  If you don't feel as strongly about that as me then I am guilty of envy. 
     So to all the rest(and what seems to me the huge majority of everyone here)I don't keep a journal so I can later look at it to remind myself of something.  I do it for understanding, knowledge and information that can be backed up and to hopefully get to give back anything that can be helpful to anyone who can use it(especially since I have no apprehension try a treatment that most people might be worried to try). 
     Nothing is worse than ch.  It's taken my life as I used to know it, destroyed my relationships, and has almost ruined my career in it's infancy.  It made only one mistake though.  It let me find all of you before it could kill me.  An opponent with nothing to lose is the hardest to beat so I hope the beast has it's gloves tied tight.  You are all making this possible and I will forever be in your debt.
     And as for the Ohio thing, I don't have facts to back it yet but I've been working on laying the months weather history over my documented accounts and am finding, what I believe, to be more than coincidence.  And when you live in a state with a known motto,"if you don't like the weather, wait a minute", well lets just say I get plenty of chances to research.