I just wonder, not sure if this is the right section to post this. And if so, how? And how much part of the overcoming was pure mental willpower?

By the way, what do you guys think about the way you think (I mean your beliefs) and CHs? Do you think that really really not wanting it will make it better, even heal it? Do you think it's possible that by willpower you can make the headaches go away, what is your take on that? I just want to start a little bit of discussion, because I think that hope will get us a long way, and that a positive atitude is the key to beating this. I also think that the mind alone can cure this! I can write a bit more about it if someone asks me why I think that, but I'm just interrested to see you guyses opinions. Thanks for reading!

Quote:

I also think that the mind alone can cure this!

I think you're full of it. But since you're just aching for someone to ask you, why don't you enlighten us?

I don't think that you are full of it.

I think that you are 18...scared and looking for answers and trying to figure out what this is.

My first response is that you need to make sure that you indeed have clusters. You need to see a neuro and get a proper diagnosis.

Then you need to read everything that you can find out about this disease. It will not kill you and you can manage it and still live a full life.

You said in another thread that you are 18 and Portugese. Son....I can assure you that positive thinking will not make them go away.

See a doctor.

Brew wrote on Aug 15^th, 2010 at 11:19pm:

Quote: I also think that the mind alone can cure this! I think you're full of it. But since you're just aching for someone to ask you, why don't you enlighten us?

While I'll agree that your state of mind will undoubtably help you to cope with CH and although it won't lessen the pain, I believe that you can manipulate your mind in such a way that your perception of the pain is less, ........IMHO, the only way the mind will "CURE" CH is if the brain behind that mind dies and the sufferer along with it......

....Hell, I been sittin here 3 minutes tryin to decide if I was gonna post this.....theres just something terribly not right about having "cure" and "ch"  in the same sentence let alone right next to each other!!!

DD

Your mental attitude is critical in dealing with CH. Depression, hopelessness, all make the condition seem unbearable. The ability to maintain a positive mental attitude will make the management of CH far more effective.

We haven't discovered a cure yet, but there are new medications and new methods for using older treatments, such as oxygen, which have substantially improved the quality of life for many.

My opinion? You cannot cure this with mind power alone. It would be like "willing" Parkinson's disease to leave your body. If you do indeed have CH, you have it for life. Wishing you luck in a rapid diagnosis and an effective treatment plan. I was 18 when mine started, 32 years ago, we've come a long way since then! ;)

Joe

I certainly think that your state of mind can help to cope with these.  It won't make them go away, though. 

Nothing psychosomatic about them.  They're as physical as a broken leg.

Best,

George

Come on I tried that 20 years ago, and 19, 18, 17, 16.....and
every time I am ready to inject the Imitrex Dam thing just
gets stronger and says stick it to me baby!  And I listen,
no more wishing, praying, cursing, just screw it all and in
goes the drug of choice!  yes call me a junkie, i guess, I
don't care when or where I am out comes the needle and
bang!  Next I'm doing the dance, hate to do it in public, but
subway, street, bus you name it I've done it. Had you asked
me 20 years ago if I could stick a needle in my leg or arm
I would have said never!  See how things change. But, will
this some where, dude, you got some strong ass will,
cause I couldn't will it past my bathroom door as I sat there
puking my brains out before Imitrex was given to me.  All
my willing didn't get me a dam thing.  Would pray for the
end of time or the head.  

Didn't want to hear the answer from the Doc so I was
willing this thing everywhere.

I've only been kicking the footy around with the demon for about 12 years so I'm no expert.

Old school mate & long time friend started at age 19;now 58 but hasn't had a cycle in 8 years, does he think he's cured, not bloody likely he has still got his o2 on hand just in case.

Cheers
Barry

If current research out of Australia is correct, there is a physiological cause for CH's, and that makes them a primary headache: i.e., they exist as a direct result of a biological cause (perhaps an extra nerve ganglion in the hypothalmus) and are not a secondary symptom of something else. For example, to keep the broken arm thingie going: your pain is a secondary symptom of the primary caused-your arm is broken. Heal the arm and the pain goes away. Stress headaches are secondary to the primary cause of mishandled stress...CH's are not such. As to state of mind, everything said above (except for original poster) seems to be my experience as well. Blessings. lance

I should apologize. I'm sorry. I don't really think you're full of it.

But on another thread, you've stated that you had your first CH yesterday. You haven't been diagnosed, you had a one-off yesterday, and now you state that you think this whole affliction can be cured by thinking about it really, really hard.

I remember the exuberance of youth and thinking that everybody over the age of 30 was completely f'd in the head. I was your age once, too. So please accept my apologies for forgetting for a short time what the youth perspective on the world is. I know now that you truly do believe that this thing can be cured by thinking about it.

I've spent more time thinking about it than you've been present on God's green earth, and I haven't cured it yet, but maybe someday I will.

Back In the day I remember friends telling me that a
hangover felt like the end of the world.  Now, I have never
had one of those! So can't compare but they only got
them from drinking! So there is the solution!  But, young and
well invincible, that was a freak won't happen tonight, they
go at it again!  I got too drunk to walk once said not for me!
Don't drink still.  Silly me!   :D

Hi CH'er, I like your style.  Don't let these old f-er's get you down.  I agree with them, but it doesn't matter.  All that matters is how you are going to deal with your life.  On another thread I encouraged you to seek some medical attention being that you have new pains that you have never had before.  So go check it out.

Positive mental attitude, breathing, meditating etc, all have their place in any disease or condition.  So yes, a powerful heart and brain will help no matter what you have.  Most of us think this is a physical defect/condition without a cure.  You haven't been through it yet and may not even have ch so who really knows what you will end up dealing with.

If you have the clusters then you will have a lot of choices about how you manage them.  Some people just take it.  Some people medicate.  Some people do other stuff. 

In the end just know that people here really care about you.  Gruff sometimes, don't let that scare you away because we do really care. :)  Let us know what you find out.

--Shaggy

Brew wrote on Aug 16^th, 2010 at 2:43pm:

I should apologize. I'm sorry. I don't really think you're full of it. But on another thread, you've stated that you had your first CH yesterday. You haven't been diagnosed, you had a one-off yesterday, and now you state that you think this whole affliction can be cured by thinking about it really, really hard. I remember the exuberance of youth and thinking that everybody over the age of 30 was completely f'd in the head. I was your age once, too. So please accept my apologies for forgetting for a short time what the youth perspective on the world is. I know now that you truly do believe that this thing can be cured by thinking about it. I've spent more time thinking about it than you've been present on God's green earth, and I haven't cured it yet, but maybe someday I will.

Good for you, Brew...   :)

And, CH'er, I agree with everyone else - this is in your head but not just in your mind.   ;)

I like the way George put it - 'They're as physical as a broken leg.'

You can not overcome clusterheadches by willpower. It is important that you contiue to find out what works for you. This site gives some great clues on what might help you and what is more likely to waste your time. I had them every single day, 4 attacks per day, for 15 months. What seems to help, O2, water, coffee, energy drinks, Ibuprofin, imitrex, verapamil, cortisone, melatonin,  etc. Things that seen not to work are topamax, tylenol, painkillers, Chiropractic, acupunture, biofeedback. I tried all of the above (except painkillers) and many many more. Keep trying, don't give up.

You do not lack willpower. It is trggered by your hypothalmus. It regulates important funtions that keep you alive. You can not overcome its funtions by willpower.

richcurtin wrote on Aug 16^th, 2010 at 11:41pm:

You can not overcome clusterheadches by willpower. It is important that you contiue to find out what works for you. This site gives some great clues on what might help you and what is more likely to waste your time. I had them every single day, 4 attacks per day, for 15 months. What seems to help, O2, water, coffee, energy drinks, Ibuprofin, imitrex, verapamil, cortisone, melatonin,  etc. Things that seen not to work are topamax, tylenol, painkillers, Chiropractic, acupunture, biofeedback. I tried all of the above (except painkillers) and many many more. Keep trying, don't give up. You do not lack willpower. It is trggered by your hypothalmus. It regulates important funtions that keep you alive. You can not overcome its funtions by willpower.

The Dope-o-Max Seems to be helping me!
With verap and imitreax and 5 hr energy.  But, that's this
old F'er to quote someone else.

Old is a number, Dollard to donuts I match many half my age at many tasks, you would
be surprised maybe that and old F'ef is doing.  Dif story.
and off topic so, have a gr8 F'ing week!  He is no spring
Chic!

Just poking some fun! 

Peace,

Boski   :D

Posts like these and the responses to them are the reason I love this F-ing place and the f-ing people on it!!!

[smiley=crackup.gif] [smiley=crackup.gif] [smiley=crackup.gif]

Ohhh -- "cure" and "CH"? I have taught myself to be open to new ideas but never ever get too optimistic about CH and let me guard down. When I do and that next attack comes, I kinda lose it and break down all over again.

Having said that, what I noticed that no one seemed to mention in this post is that mental attitude can possibly impact the severity of an attack, even though it is not the cause of the attack. I cannot image stress-reducing behaviors replacing my O2 and ... but maybe they can lower the KIP level or number of attacks in a day.

Open but not too optimistic.

Actually it's been discussed a couple of times, how the less you "fight against it" the less intense the pain is perceived. More impotantly for me, the less I fight against it, the less secondary damage I seem to do to my shoulders, neck and head! I'm one who strongly agrees a postitive attitude is critical in dealing with CH!

Joe

Much has been made in this post regarding age, but I only saw one that gave a little hope ... the guy who's 58 and hasn't had one in 8 years. I've read other things before that implied that "sometimes" these things go away with age.

My battle only started 10 years ago, but I'm now 49 and wondering if there might actually be something to look forward to in my 50's! I doubt there's a "magic" age that they just disappear, but is there a range where people seem to have started finding relief??

Thanks for the opinions and input.

Red

painfulnoodle wrote on Aug 21^st, 2010 at 1:45pm:

Much has been made in this post regarding age, but I only saw one that gave a little hope ... the guy who's 58 and hasn't had one in 8 years. I've read other things before that implied that "sometimes" these things go away with age. My battle only started 10 years ago, but I'm now 49 and wondering if there might actually be something to look forward to in my 50's! I doubt there's a "magic" age that they just disappear, but is there a range where people seem to have started finding relief?? Thanks for the opinions and input. Red

Each person is different even if they suffer the same disease.  No one can really tell you if you will stop suffering/go into a remission.

My father started having CH as a child, he is now 77 and still suffering, only now we suffer together.

Just from what I've seen on this board......as you hit mid to late 40's and 50's, your remissions get longer and longer. The problem with accurate stats is many stop coming to the board when they stop getting attacks! So we're never sure if they stopped getting hit, or just had no need for the board!

Joe

Well ... I have to admit, I haven't been as active here as some that are much more dedicated. It's sort of like the leaky roof ... when it's raining you can't fix it and when its not, you don't need to! However, I can see that is a selfish approach and will try to stay more active here. Thanks to all of you who do!

Red

Started at age 20 with a cycle every 8 or 9 months.  At age 40 the remissions jumped to 2 years.  Now 59 y/o and haven't had an attack for over 5 years.  There is hope.  Hang on to it.

My story is very much like Bob's. Today I am 61 and my last cycle was in 2000. So I am at the 10 years mark. Dr. Goadsby tells me that I am just in a long remission. I hope he is wrong. We will see,

You guys are giving me hope!

Maybe this is the beast's last hoorah kicking my ass before it moves on to someone younger and more able to deal with it!

;D

Red

painfulnoodle wrote on Aug 21^st, 2010 at 4:14pm:

You guys are giving me hope! Maybe this is the beast's last hoorah kicking my ass before it moves on to someone younger and more able to deal with it! ;D Red

I swear we CH'ers are the biggest optimists on the planet! Coincidentally, I just finished my LAST ever cycle! ;D

Joe

Cool ... does that mean we can go drink and party now??

I'm in!

Red

Hope I'm the exception to the rule, but after 45 years of Migraines, I was diagnosed with CH in April at age 56. My frist cycle lasted 5 weeks and I was able to bust it with RC Seeds. Now am between cycles praying that I'm one of the rare ones that never has another cycle. By the way from one who has had both, I would take my migraines back tomorrow to avoid the next CH cycle.

I do believe that state of mind is crucial for beating the beast and am confident every time I suck on that O2 that is is going to abort my HA, and every time I've used other natural cures, that they will keep the next cycle at bay.

Funny, this young man got us all riled up and hasn't been back since, but good discussion.

BTW - the down side to the longer remissions was longer cycles.  Normal for me in my younger years was a 4 to 6 week cycle.  The last cycle I had lasted 5 months.  That sucked!

Bob that's what Joe's last 2 cycles have been like. Just lasted for ever and were harder to manage. We're hoping that means he's in for a long remission too. And by remission I mean forever!

Forever - like never - is an awfully long time. Who knows? A cure could be just around the corner. A simple operation or an as yet unknown drug could provide the answer. It's hard to imagine that some form of mental gymnastics could provide the "cure" but the optimist in me has to believe that at some point medical science will come up with a way to remove whatever it is that causes these things or find a drug, like insulin for diabetics, that will allow sufferers to lead pain-free lives.

Quote:

Bob that's what Joe's last 2 cycles have been like. Just lasted for ever and were harder to manage. We're hoping that means he's in for a long remission too. And by remission I mean forever!

Since the first time I met Joe I've noticed how similar our CH stories are.  It wouldn't suprise me at all to see him go into long/permanent remission like I have.

Oh to say that would make me happy...yeah...major understatement!!! ;D

Joe

Yeah Marc....there's always a price to be paid! ;)

Joe

Hi Joe,

Retirement's the first step towards getting "really old." You'll be there in no time, lol.

Ron

Yes Bob......our 3 cycles have been pretty identical. My last 2 cycles had stretched to 6 mos with 3 years in between and now pf for 10 years.

Plus all 3 of us are retired so I guess that DOES make us old but the pf time is really nice. :)

Jimi & Joe, I'm in good company.

Hey Marc - we finally have sunshine and it's been 80 degrees here the past 2 days.  I've got a 6:37am tee time at MB tomorrow, the drizzle and fog will probably be back by then.

Guiseppi wrote on Aug 21^st, 2010 at 10:11am:

Actually it's been discussed a couple of times, how the less you "fight against it" the less intense the pain is perceived. More impotantly for me, the less I fight against it, the less secondary damage I seem to do to my shoulders, neck and head! I'm one who strongly agrees a postitive attitude is critical in dealing with CH! Joe

yep........