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..

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

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.  >:(

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: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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

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.

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...START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Sending PF Vibes your way!
Ging...

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

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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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.

[smiley=hug.gif]

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

welcome,

Go to clusterbusters.com and read. Why not?

Any questions let me know.   Coach Bill

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

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...

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

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.

Such a good point Bejeeber, I for one will try to be more specific in the future.

Cliff, how are you doing?

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.....

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       

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

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.

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.

God bless you, Cliff...you will certainly be in my prayers.