Apparently I must be mildly retarded too, Ryan, cause I couldn't figure this site out either!  lol

I made the below post to another msg board, but now think this is where it should have probably went.  I am very excited to have found a community of people who, for the first time, will understand my pain.  In my many years of suffering, I have long since given up trying to make anyone understand and just accepted the headaches as part of who I am... and I am Dawn! My beast, of course, is Horton. 

New to the site, but certainly not new to CH.  I have suffered for 26 years with episodic cycles.  Cycles occurring annually for about 4 months in duration, 3-5 headaches daily, mostly at night.   CH and I have developed a very intimate relationship over the years.  I know my beast so well I can damn near predict when he will make his annual appearance and almost precisely what time everyday I can expect to see (or feel) him.  Imagine, all this time and I still cannot welcome him with open arms.  It is a love hate relationship I suspect... he loves me and I hate him.

I am a 41 year old female who was plagued at 15 with these God awful headaches.  Like so many others, it took 6 years, some not so pleasant "procedures" (the wisdom teeth removal, the deviated septum cure, etc), the thinking "am I crazy", and several doctors later to diagnose them as CH.  I have been on every med in the book with varying results.  What works one time, may not work the next, and so on....  very familiar story for all I'm sure! 

Funny thing is, between cycles I have a tendency to forget about the beast, then once he returns I become "obsessed".  Obsessed in understanding them, obsessed with WHY, obsessed with them taking over my life.  I am about 4 weeks into a full blown cycle now and in my quest for answers, stumbled upon this site...    

JustNotRight wrote on Dec 11^th, 2010 at 4:56pm:

Welcome DW and I'm sorry the beast came knocking again, at least you knew to be ready with ammo in hand. Stick around read all you can and check out the O2 page if you are not already using it.  Stick around even when not in cycle maybe you'll be able to help someone else deal with him. Sending PF vibes your way.

The above was my response to your original post DW again Welcome!

You do have a very very familiar story, what with wisdom teeth pulled and all.  :o

Glad you've landed at the right place now. I'm a 30+ year CH'er and the info and advice found here have been the missing links that have revolutionized my experience and changed my relationship with the beast.

He has been forced to reconsider whether he really does love me after all.  8-)

What a great first post!  Hello and welcome, so glad that you found us.  What a difference it makes to know that you're not alone!!

Definately check out the 02 page - if you've tried it in the past and it didn't work - you will find that we are doing it differently these days.  Oh, and don't expect your doctor/neuro to be up on the latest meds etc.  Read all you can here, sure to be something that will answer some of your questions... although maybe not why - other than faulty hypothalamus  :-? 

Wishin you all the best,

Kate

Ginger, Bejeeber and Kate - it is an absolute pleasure to meet you!  I am just sorry it is through such a terrible affliction that has brought us all together.  I have never met another CH'er and have so much to say, so many questions to ask (like basically 26 yrs worth of suppressed conversation - lol), but I will force myself to do it over time!  I would like to say to every person in here (and their supporters), you are my hero!!!  Anyone who can endure this beast and live to tell the story is right up there with Super Man and Wonder Woman in my book!  Cheers to you all!!

I think the topic that is probably of most interest to everyone is how the hell you make the pain stop.  I have been on, or at least tried, most everything mentioned that I have read so far in here (still so much to read on this site), except the water, water, water thing... Hmmmm... 

My drug of choice is still Imitrex.  I am prescribed 100mg, tho 100 is WAY too strong for me and the side effects left me thinking my ear and jaw were going to fall off after the headache was gone.  I cut the pills into 4, as 25mg does the trick for me (and this also gives me 4X the med!!).  I don't honestly know if it is still an issue since I found a work around, but at one time when Imitrex first became available thru script, my insurance would only cover 18 of those dudes a month, which was more than sufficient for a normal migraine sufferer, but is nowhere close to what a CH'er needs.  And the injections I believe were 6 a month... hell that barely gets a CH'er thru one damn day.  I learned to cut the 100mg and "stock pile" during remission (aw yes, little tricks of the trade), that and having your Mom tell a little white lie to her doctor that she has migraines so you can have HER pills, too!  Oh what we won't do just to get thru.

I have been a screamer, a thrasher, a rocker, a pacer, and even a head banger (the head banging IS NOT WORTH IT to those new to this, it does nothing to relieve the pain, but simply creates additional pain.. trust me, the CH is bad enough).  I have been through every phase of this terrible disease.  The fear, the frustration, the helpless and hopelessness, the loneliness, and of course, the ANGER!  I have been to the no sleep, afraid to sleep and the OMG if I don't get some sleep phases over and over.  It was not until the past few years have I made up my mind that it is what it is and I refuse to let it take over my life any longer, a little thing I refer to as "mind over matter", if you don't mind, it don't matter!  I now deal with it in an optimistic and positive manner, added with a little dose of humor.  Most of the time, tho the occasional rocking will still take place, I simply lie still and calm during the attack, telling myself over and over it will soon pass.  The Imitrex begins easing the headache up in about 15-20 mins and I am able to return to sleep until the next attack.  I no longer fear going to sleep or even back to sleep,  I will simply fight it one headache at a time and not dwell on what lies ahead.  Granted, I think during a cycle I have a permanent bruising in that place of your nose where that little squishy area meets the bone/cartilage and the area between my nose and the corner of my eye, as I apply as much pressure as I can to one of these two areas.  lmao

I have honestly found, with an optimistic approach, the CH does not seem as bad.  Oh I still take the meds and quite certain I always will, but there have actually been times when I have (this may sound crazy) been able to, "talk myself out of the headache".  I am not at all sure how I did it, but I know I HAVE done it and on several occasions.  I have researched lucid dreaming in the past and read a lot about it being a mastered art, a skill one can develop thru practice; and I honestly do wonder if aborting a CH cannot be similar in nature?  Has anyone else ever experienced this?  This to me would be a most ultimate goal to perfect and master if it really could be done.  Probably not a realistic goal, but CH is so mysterious just by their very nature, that why not?  Just food for thought...  :)

dw wrote on Dec 13^th, 2010 at 1:30pm:

Ginger, Bejeeber and Kate - it is an absolute pleasure to meet you!  I am just sorry it is through such a terrible affliction that has brought us all together.  I have never met another CH'er and have so much to say, so many questions to ask (like basically 26 yrs worth of suppressed conversation - lol), but I will force myself to do it over time!  I would like to say to every person in here (and their supporters), you are my hero!!!  Anyone who can endure this beast and live to tell the story is right up there with Super Man and Wonder Woman in my book!  Cheers to you all!! I think the topic that is probably of most interest to everyone is how the hell you make the pain stop.  I have been on, or at least tried, most everything mentioned that I have read so far in here (still so much to read on this site), except the water, water, water thing... Hmmmm...  My drug of choice is still Imitrex.  I am prescribed 100mg, tho 100 is WAY too strong for me and the side effects left me thinking my ear and jaw were going to fall off after the headache was gone.  I cut the pills into 4, as 25mg does the trick for me (and this also gives me 4X the med!!).  I don't honestly know if it is still an issue since I found a work around, but at one time when Imitrex first became available thru script, my insurance would only cover 18 of those dudes a month, which was more than sufficient for a normal migraine sufferer, but is nowhere close to what a CH'er needs.  And the injections I believe were 6 a month... hell that barely gets a CH'er thru one damn day.  I learned to cut the 100mg and "stock pile" during remission (aw yes, little tricks of the trade), that and having your Mom tell a little white lie to her doctor that she has migraines so you can have HER pills, too!  Oh what we won't do just to get thru. I have been a screamer, a thrasher, a rocker, a pacer, and even a head banger (the head banging IS NOT WORTH IT to those new to this, it does nothing to relieve the pain, but simply creates additional pain.. trust me, the CH is bad enough).  I have been through every phase of this terrible disease.  The fear, the frustration, the helpless and hopelessness, the loneliness, and of course, the ANGER!  I have been to the no sleep, afraid to sleep and the OMG if I don't get some sleep phases over and over.  It was not until the past few years have I made up my mind that it is what it is and I refuse to let it take over my life any longer, a little thing I refer to as "mind over matter", if you don't mind, it don't matter!  I now deal with it in an optimistic and positive manner, added with a little dose of humor.  Most of the time, tho the occasional rocking will still take place, I simply lie still and calm during the attack, telling myself over and over it will soon pass.  The Imitrex begins easing the headache up in about 15-20 mins and I am able to return to sleep until the next attack.  I no longer fear going to sleep or even back to sleep,  I will simply fight it one headache at a time and not dwell on what lies ahead.  Granted, I think during a cycle I have a permanent bruising in that place of your nose where that little squishy area meets the bone/cartilage and the area between my nose and the corner of my eye, as I apply as much pressure as I can to one of these two areas.  lmao I have honestly found, with an optimistic approach, the CH does not seem as bad.  Oh I still take the meds and quite certain I always will, but there have actually been times when I have (this may sound crazy) been able to, "talk myself out of the headache".  I am not at all sure how I did it, but I know I HAVE done it and on several occasions.  I have researched lucid dreaming in the past and read a lot about it being a mastered art, a skill one can develop thru practice; and I honestly do wonder if aborting a CH cannot be similar in nature?  Has anyone else ever experienced this?  This to me would be a most ultimate goal to perfect and master if it really could be done.  Probably not a realistic goal, but CH is so mysterious just by their very nature, that why not?  Just food for thought...  :)

Good post and WELCOME. Great attitude,and like you I dont fear the beast. Bring it on I now (thanks to this place) have what I need to kick the beast's $$S...

dw wrote on Dec 13^th, 2010 at 1:30pm:

I think the topic that is probably of most interest to everyone is how the hell you make the pain stop.  I have been on, or at least tried, most everything mentioned that I have read so far in here (still so much to read on this site), except the water, water, water thing... Hmmmm...

Have you tried oxygen??  A life saver for so many of us.  With a high flow rate I can abort a hit in about 10 mins.  Helps with shadows too (low grade headache)

Kate

I have read the oxygen tab and many of the posts that others have written about it.  I have to admit it has sparked my interest, but I also have to say it scares me as well.  I have tried oxygen only once, a very long time ago, with nightmarish results.  That one time was enough for me to decide right then and there I never wanted to try it again.  It took the demon trying to rip, tear, and claw his way out of my skull via my eye socket to a whole new level.  It multiplied a pain I would have never dreamt could be worse by, well a lot, and would not subside.  It ended several hours later in the ER with a shot of Demerol so strong it more or less left me incoherent for the next 2 days.   As I said, this was a long time ago, more than likely not used correctly and more than likely has evolved a long way since then, but the haunting is still there.  I look back now and laugh about it... I figure that was the beast's way of teaching me not to under estimate his power! LOL  I won't say I will never try it again, especially if I start feeling the CH spiral out of control.  If and when I do decide, I will be seeking the advise of all of you, my new friends and the experts!!

Well if you do ever get more than a 6 per mo. allotment of imitrex injections, the imitrex tip tab on the left details how to get 3 aborts (or in your case, possibly 4) from 1 injector's worth, much as you have figured out how to do with the pills. I mention this in case you find the pills becoming ineffective, as most of us find the injections to be the fastest, most reliable form of imitrex.

I do recall one of my worst episodes about 18 years ago when I was experiencing some several hours long ragers, when I was able to actually lie down and go into a meditative state once where I detached myself from the pain. just once though.  :P Wasn't ever able to recreate that, but I was later able to gather a fearsome arsenal (including O2 as a first line abortive, imitrex injectiions as a backup), that would allow me to give le beaste some consistent stiff uppercuts to the jaw.  8-)

Sorry you had that bad experience with O2. I haven't heard of that before, and that is really unfortunate.   :'(

I do have one characteristic that in all my research seems to be different than most sufferers.  My affected side's (right) nasal cavity is NEVER "stuffy".  It can be completely stuffed prior to the onset, but at unset, it is completely clear and very dry, accompanied by a burning sensation.  Once the eye droops, reddens and waters up, I get the nasal drip, but still NEVER stuffy.  Once the headache is gone, the nasal cavity may stuff up on me again, especially if it was stuffy prior to the headache.  The air being forced through the cavity really seemed to only aggravate the situation.

As far as the meditative state, I'll save that for later, after all I did promise to not unleash my 26 years of silence in one setting! hahaha   I'll check out the Imitrex tab as well, thanks for the tip.

dw wrote on Dec 13^th, 2010 at 8:40pm:

I have read the oxygen tab and many of the posts that others have written about it.  I have to admit it has sparked my interest, but I also have to say it scares me as well.  I have tried oxygen only once, a very long time ago, with nightmarish results.  That one time was enough for me to decide right then and there I never wanted to try it again.  It took the demon trying to rip, tear, and claw his way out of my skull via my eye socket to a whole new level.  It multiplied a pain I would have never dreamt could be worse by, well a lot, and would not subside.  It ended several hours later in the ER with a shot of Demerol so strong it more or less left me incoherent for the next 2 days.   As I said, this was a long time ago, more than likely not used correctly and more than likely has evolved a long way since then, but the haunting is still there.  I look back now and laugh about it... I figure that was the beast's way of teaching me not to under estimate his power! LOL  I won't say I will never try it again, especially if I start feeling the CH spiral out of control.  If and when I do decide, I will be seeking the advise of all of you, my new friends and the experts!!

That sounds like a horrible experience, so I can understand why you are anxious not to repeat this. However you'll find that people here report very quick aborts with oxygen. I can normally kill off a CH in 6-8 minutes.

Where are you in the world? There may be someone nearby who can show you how you can use oxygen effectively?

That is a terrible...and I think quite odd...reaction to O2. We've found many who say it didn't work when what really happened is the flow was too low (7-10lpm instead of 25+lpm) or the mask was not a "non-rebreather." Both contributing to the cycle ramping up fully rather than aborting. Pills are useless. Energy drinks seem to help. If you can "talk yourself out of the hit" then do that. I am able to dissociate from the pain when it's on lower KIP levels, or as the hit is beginning, while trying to abort it with O2 and Monster. Works for awhile. Not when the hit begins to climb in intensity. I think you should look up one of Ginger's older posts and look at her list of things to do and try. It's quite thorough and I'll bet she has it and can post or send it if you ask pretty please. In the meantime, keep writing and fighting. God bless. lance

My neuro did not think it was the O2, in fact, he even tried talking me into staying on it, which I very respectfully declined (my neuro, btw, was my God Send... he has been my saving grace since the day he diagnosed the CH 20 years ago).  It may have just been one heck of a coincidence, but if it was, the timing was so perfect that I could not be convinced the two were not related.  It may have just been one of those freak, or "morphing" (love that) things, too, for all I know.  I just know it scared me and still does a little because I know I never want to experience anything like that ever again.

I am still kind of trying to figure out this site, and work is extremely busy right now so my time is limited, but would love to read the post from Ginger.  When I said talk yourself out of a headache, I meant before the headache comes on as well.  Agree, once that monster is there, very little reasoning with yourself is possible.  If you could talk yourself out of it before it does come on though, which I have done several times, would be a wonderful skill to master.

Hello and welcome,

Quote:

My neuro did not think it was the O2, in fact, he even tried talking me into staying on it,

I agree with the neuro, 02 is a lifesaver.
all the best and welcome again
the bb

Quote:

...Funny thing is, between cycles I have a tendency to forget about the beast, then once he returns I become "obsessed".  Obsessed in understanding them, obsessed with WHY, obsessed with them taking over my life...

I hear ya honey!  I do the same thing myself.  I have been in remission for 3 or 4 years until two months ago.  Every time they start up again I refuse to believe it for a few days then, BAM!!!, I remember what it is.