Hello to all fellow suffers.  I have been suffering for about a week.  Long history of headaches but have not had severe CHA in about 5 years.  I was never officially diagnosed with CH due to other headaches complicating the picture (even had a pointless surgery to remove a mass in my forehead that might have been the source of the pain)...but now I have CH...no doubt.  I want to write more about my history but for now I have some questions it that's OK...

1. I have been given an 8 day taper of predisone...I have taken it before (including injecting myself daily for a month) and I never got any results but I just began a CH cycle so is it worth trying?

2. I have 6 mg vials of injectable Sumatriptan...I am afraid it will actually prolong the cycle...and, should I inject 2 mg if I use it?  I only have 5 vials and the RX says I can only use it 2 days a week...what good is 2 a week...I need to use it 2 times a day!

3.  I have O2 tanks (E 682 liters) but I am going through them a tank a day!  They only last for two - twenty minute sessons at 15 lpm...Maybe if it helps I should get the mask that stops the flow when you're not inhailing?

4. Should I use the O2 and the Imitrex at the same time?  I did get some relief from the O2.

5. This is important....I have been reading this site and I don't see anyone like me...namely, when I finally get the INTENSE pain directly over my right eye to clam down I still have a terrible general headache all over my head and the site of intense pain remains sore all day.  Does anyone else get a 'global' headache following a bout of CH pain?

Thanks for any advice on my questions.  I have tried Indomethicin (Indocin) and I just don't know if it helps...I also have injectable Toradol.

By the way...my particular CH come on after I fall asleep...about 45 min. to 1 hours into sleep....BAMM!  Screaming pain over my right eye...I have had 3 large kidney stones and this CH pain makes that look like nothing!

Thanks,  lastly...why is it that if this pain syndrome is so severe that no one has ever heard of it?  Dispite this site (which I really appreciate) I still fell totally alone.

BJBR...Thanks!  Nice to know someone's really out there.  I do not have the best mask, it's not a non-rebreather.  I taped up the side holes and just seal the mask to my face when I inhale and remove it to exhale...I try to exhale for twice as long as I inhale to maximize the vasoconstictive response to hyperventalation.  If the O2 defintely works I will have a demand valve overnighted to my house regardless of cost....I'd sell my car for relief.

By the way...although I get hit usually at night...it dosn't really matter what time of day or night...I get it full blown severe whenever I fall asleep, no exceptions for the past 4 days.

I had my first bout of CH pain in many years on 2/4/11.  I fell asleep on an airplane bound for Jamaca and woke up screaming out lould in my seat...they almost had to isolate me on the plane...they gave me an ice pack and it subsidied.  Then I got another bout that night and paced on the beach until the sun came up.  Then, PF for 6 days, nothing...but the day after I got back I awoke to the worst pain in my life...directly over my right eye.  Now I have had a severe headache for 4 straight days with intermittant episodes of cluster pain.  I can not believe that this is my life, really.  I just don't get why this is happening to me....why now...why me....why any of us?  If I didn't have a daughter I would think about the big "S".

Welcome to the board, the good news is you're not alone, and won't ever be again.

Are you working with a "headache specialist neurologist." GP's don't know squat about CH, and your garden variety neuro's don't know much more then that. From experience we've found people obtain the best results from a neuro, who specializes in headaches. The lingering pain you describe may be just what we call a "CH hangover", sometimes called shadows, or you could be a dual diagnosis case, CH and migrains, or ??...sadly we do have several on the board with multiple diagnosis. Makes the diagnosis and treatment much tougher.

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Read this link when you get a chance. Just to make sure your maximizing the effectiveness of the 02. Most docs prescribe it at too low a flow rate, and like you, they give re breather masks, or worse, nasal canulas, which guarantee failure. I use a demand mask and swear by it. But they are pricey, upwards of $300.

You haven't mentioned a prevent med. A med you take daily, while in cycle, to reduce the frequency and intensity of your attacks. Verapamil is one of the more common prevents. Usually started WITH the prednisone taper as it takes up to 2 weeks to become an effective prevent. The prednisone will usually hold the beast at bay while the verapamil builds up. Lithium is what I use, at 1200 mg a day blocks 60-70% of my hits. Topomax works for some but is often called dopey max as it can make you a bit loopy.

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This link will show you how to get 3 shots outta each of your auto injectors. Most can abort with just 2 mg.

Lastly, visit this site. They use "alternative" methods to bust their cycles, outside of mainstream medicine, but hard to argue with their success rate.

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Welcome home.

Joe

Acoustic boy myself, Ovation 6, Takamine 6 and a 12 string Yamaha. I hear ya, without music, life is a mistake! I'm with Bejeeber, as many pluckers as we have, maybe it is something in the strings!

Joe

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These guys came and spoke at our convention. They have some pretty cool stuff in their high flow and demand lines.

Joe