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Cliff ODell

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Im still speechless
Nov 5^th, 2010 at 8:16pm

I have been beside myself for 2 days now since i found CH.com
I have been locked in my warehouse for 5 days and just finally went home to my family. I had just started running out of my shots , i thought after saving 80 of them last winter id be ok well i was wrong it got so bad last sun that i had a panic attack from the beast it would not stop and my shot box only had one left but I left it here because i allway say id rather be at home than out when he comes..this time he kicked my ass i coulnt see i was tring to feel my way around the shower after sitting outside in my underwear soaking my head with the hose when it was about 35 degrees outside . I ended up passing out in the shower i feel and knocked my self all the way out ,, I woke up covered in my own piss . I was actually relieved I had been out for a min and when i came to the nott on my head was the pain i was feeling not the beast .I could not let them see me like this it kills my girls hearing their protector on his knees begging god to KILL him and asking what did i do to deserve this why are you punishing me..I was diagnosed 5 years ago with chronic clusters I had them everyday for 8 years my babys mom left me after the first year she thought i just wanted pills , i wish it was that easy ,for someone to tell you your making this shit up will make think in crazy ways..I have so much more i want and need to say but the long prednisone use has my body all fouled up and my hands hurt from typing this much , it sucks im 32 and my body is givin out from the meds , I am so relieved after seeing im not alone after finding this it did take me a few days to do this it was hard at first just seeing that this is what it is . I allways hoped theyed find something wrong with my brain just so they could make it stop..Now its official im not alone For all on here GOD BLESS ALL OF YOU .. No-one knows what we go threw..

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Linda_Howell

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Re: Im still speechless
Reply #1 - Nov 5^th, 2010 at 8:36pm

No Cliff, you're not alone.

Besides Pred. can you tell us what else you have tried in 5 years? So very many of us have such great success with breathing pure oxygen. There is a link to the left of here in yellow. Click on it and read the entire thing. Ask questions here if there is something you don't understand.

I've been chronic for 24 years now and 02 is my life-saver. If I can get on it at the 1st. twinge, I can abort in 10 mins or so. Sometimes longer. In order to get your headaches under control, you should be on a preventative as well as an abortive such as 02.

Linda

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Hurt people.....hurt people. Think about it.

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bejeeber

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Re: Im still speechless
Reply #2 - Nov 5^th, 2010 at 9:44pm

Well I'm practically speechless now, Cliff - that sounds like a really horrible s**tstorm you've been going through. Very sorry to hear that. Angry

What a lot of people find after researching here and asking questions is that not being alone isn't the main value of this site. It's the "how to" info coming from those who have gotten real relief from CH that is truly priceless.

You listen to Linda now - the newer, much more effective way of administering O2, as outlined at the oxygen info link to the left is widely heralded by a ton of CH'ers for good reason.

You had 80 shots of imitrex? For me that would abort 160 attacks, for many others here it would abort more like 240 attacks. I'm talking about stretching your doses as directed in the "imitrex tip". Here's the link if you're not already doing this: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Long term high doses of prednisone. Been there, suffered that. What a twisted soceity this has become, when we're taking toxic chemical crap like that which will destroy us pretty much guaranteed - yet it is considered very legit, while there's some non toxic plant life growing right at our feet that has shown MUCH better results for many of the most severe chronic sufferers, but often we won't even consider it.

Please do yourself a potentially huge favor, suspend skepticism for a minute, and read the recent Newsweek article on the subject:
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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And watch this video talk by one of our fellow CH'ers on the subject:
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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I hope you'll join the ranks who came to this site for commiseration, and ended up staying to find out how to beat this thing. Clearly no doctor is going to do it for you.

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« Last Edit: Nov 5^th, 2010 at 9:47pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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JustNotRight

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Re: Im still speechless
Reply #3 - Nov 5^th, 2010 at 9:51pm

Cliff Welcome to the club no one volunteers for. I am sorry you have been going through this, but am glad you found this site. My heart goes out to you after reading your post. Your words are heart felt and that definitely comes through.

Linda is right get O2 asap you will be amazed at the difference in your life it can make! Please see your Headache Specialist or Neurologist and give them a print out of the O2 page.

There are things your daughter(s) can do to help you and to feel less helpless herself when you are struggling with the beast. Please see this post...Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Sending PF Vibes your way!
Ging...

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Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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An eye for eye only ends up making the whole world blind.
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If you are going through hell...Just keep going

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Guiseppi

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Re: Im still speechless
Reply #4 - Nov 5^th, 2010 at 11:11pm

You're in a crappy place right now, but please believe me, there are SOOOO many tools available now to fight CH. I was originally diagnosed in the early 80's. Then it was Lidocain drops down your nostril and oral cafergot! We've come sooo far from that.

Oxygen, aborts FASTER then the trex shots, with no side effects. Lithium, Verapamil and Topomax as prevent meds, energy drinks like rock star and red bull for aborting attacks, an alternative site called clusterbusters.com using non traditional methods to break a cycle.

Take a deep breath and start reading. Start with the oxygen info tab on the left. We'll help you every step of the way.

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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Bob Johnson

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Re: Im still speechless
Reply #5 - Nov 6^th, 2010 at 7:46am

Any possibility that you could get what you most need now--a good headache doc???

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

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Bob Johnson

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Kate in Oz CH.com Hall of Famer Offline Posts: 633 Australia Gender:	Re: Im still speechless Reply #6 - Nov 8^th, 2010 at 5:30pm Hi Cliff, Reading posts like yours reminds me of how I was feeling when I found this place. You've been given some great advice already... I'll just add that 02 changed my life. I hope and pray that you get on to it asap. Wishin you all the best, Kate
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coach_bill CH.com Hall of Famer Offline "Dont expect me to lay down for this" Posts: 680 x0\|euclid\|USA\|\|0\|0\|OH,Ohio Gender:	Re: Im still speechless Reply #7 - Nov 8^th, 2010 at 9:43pm welcome, Go to clusterbusters.com and read. Why not? Any questions let me know. Coach Bill
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wimsey1 CH.com Alumnus Offline I Love CH.com! Posts: 2457 MA Gender:	Re: Im still speechless Reply #8 - Nov 9^th, 2010 at 7:45am I just wanted to add my welcome to all the others. And to encourage you to keep writing and posting. Having found us, use this site to its highest potential. It will change your life. Blessings. lance
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Lauren17

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Re: Im still speechless
Reply #9 - Nov 9^th, 2010 at 8:58am

I will send out my welcome as well, Cliff. I am so very glad you found this place and these folks. I don't have much to add except that please believe me that a good life IS so very possible with this. People here have fantastic marriages, are quality parents, interesting hobbies, and joy. Hang in there, we are all pulling for you.

Good thoughts heading your way from Texas...

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Never, never, never give up.

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jenny134

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Re: Im still speechless
Reply #10 - Nov 9^th, 2010 at 10:44am

Cliff, So sorry for your hell!!! But please listen and ask questions....Everyone here has been wonderful,and I truly believe will help in anyway they can...Absorb as much info as you can...Just found the sight a week or two ago and Myself and It really does Help....
Good luck to you ! You do have friends here and really look into the oxygen!
Jenny

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bejeeber

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Re: Im still speechless
Reply #11 - Nov 9^th, 2010 at 7:28pm

I had a good long talk on the phone with Cliff yesterday and I found out that he had tried oxygen in the past with little success.

He was trying it as prescribed. Of course pretty much ALL doctors in their extreme ignorance prescribe low flow rebreather O2 which is pathetically inadequate for so many of us, and Cliff's results were poor, as were mine before I went 100%/Hi Flow.

I believe that when he and many of the CH'er newcomers to this board out there who have tried O2 as prescribed see people here simply recommending "oxygen", they have no reason to pay attention or be encouraged.

So I'm suggesting that if we mean high flow 100% oxygen when we recommend oxygen to a severe chronic, let's go ahead and spell it out, especially in this particular thread.

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Lauren17 CH.com Sponsor Offline Posts: 165 Texas Gender:	Re: Im still speechless Reply #12 - Nov 10^th, 2010 at 1:23pm Such a good point Bejeeber, I for one will try to be more specific in the future. Cliff, how are you doing?
Back to top	Never, never, never give up. IP Logged

mikstudie CH.com Old Timer Offline Beastmaster Posts: 284 Westland Mi. Gender:	Re: Im still speechless Reply #13 - Nov 10^th, 2010 at 2:09pm Cliff hang in there,lots of good advice here. Are you seeing a headache specialist? 100% o2 at at least 15lpm. Red Bull energy drink when you first feel a CH coming on. Melatonin an hour before bedtime can help with the night time hits. Read,Read,Read.....
Back to top	IT'S JUST A HEADACHE,TAKE TWO ASPRIN AND GO TO BED!!! IP Logged

bluenz CH.com Junior Offline Do what you love, Love what you do... Posts: 25 x0\|auckland\|New_Zealand\|\|0\|0\| Gender:	Re: Im still speechless Reply #14 - Nov 10^th, 2010 at 3:52pm what all the above said and adding hello and welcome to CH.com just knowing we arent alone is such a strength in itself hang in there Cliff
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Cliff ODell

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Re: Im still speechless
Reply #15 - Nov 16^th, 2010 at 7:35pm

Thank you everybody I have not been on in a while just in a bit of a weird place 4 months without a break which im sure you all can feel even if it was 4 days or 4 min no one should experience this stuff. I talked with someone off here last week and I ended up rambling for 2 hrs with this guy and it was the coolest thing even after 7 years of my wife going threw this she could not do what this guy did for me he UNDERSTOOD my pain. When I hung up the phone I cried my eyes out, I have hope for the first time in a long time God bless all of you, im in the process of buying a o2 tank I hope to be on to better days soon.Or atleast get a break so I can sleep again this crap will mess with your head after a while..God bless all again

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Im still speechless Reply #16 - Nov 16^th, 2010 at 7:53pm I've experienced two 18-month bouts of chronicity (is that a word?), with nary a break. A few on here have gone years and years getting hit every single day. Just to point out that it won't kill you if you don't let it. I haven't been hit since the end of May, and life is just grand right now.
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samusaran CH.com Newbie Offline I Love CH.com! Posts: 9	Re: Im still speechless Reply #17 - Nov 19^th, 2010 at 12:03pm I wish you the best, I will keep you in my prayers and together we will all make it through this. Stay strong and best wishes.
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Bigbluesman CH.com Newbie Offline I Love CH.com! Posts: 7 Louisville, KY Gender:	Re: Im still speechless Reply #18 - Dec 15^th, 2010 at 1:41pm God bless you, Cliff...you will certainly be in my prayers.
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