Im in my sixth year of cluster headaches and I just cant deal with it anymore .This thing seems to be detroying my life .how does everyone cope with every day life ?

Nicky

If you're chronic I can't answer that.  I've been episodic for 16 years with at least 1 or 2 short cycles per year.
The #1 thing that helps me more than therapy or medicine is this site.  Just talking about it and knowing you're not the only one getting visits from this beast.  Secondly, the information distributed on this site is amazing and has helped me.  Third, finding a good neurologist or headache pain specialists (somebody who specializes in clusters).  Fourth, getting the right therapy using abortives or preventative drugs.  Also, oxygen is a HUGE abortive and seems to be the most popular way to go. 
Lastly, don't think about the next headaches.  It will drive you nuts. 

Best of luck and I wish you some pain free time real soon.

Cheers,
Chad

Nicky,
I'm just into a year and a half with chronic and there were times when I thought I just might jump off a high bridge.  This website alone has helped enormously.  I just told my husband yesterday that I live with this 24/7...constantly on my mind, and I need to get it off!  Sometimes I wonder if they're self-perpetuated just because we EXPECT THEM EVERY NIGHT!  Of course when you live with something this painful, it's hard to NOT think about it.  I actually count my blessings because even tho I'm chronic, my headaches usually come every night at 11:30 and last 40 - 45 minutes.  I hear of some on this website who have multiple hits a day.  There's so much good info & support on this site that it makes our ordeal less frightening...at least to me.  I was having feelings of instability after my headaches (the next day) to where I felt like I was on the outside trying to get back in...woozy, totally unfocused.  I think what it came down to was panic attacks.  Once I realized what 'they' were, I could control them.  Someone on this site helped me with that..just by him telling me he was the same way, helped me to realize I wasn't going crazy. 
As for my nightly ritual with CH, I'm doing Kudzu and Taurine.  Everyone swears by oxygen and I'm trying to get this accomplished thru my Neuro. 
Hang in there Nicky...we'll all go thru this togehter.  We'll get by with a little help from our friends!

I can't answer with regards to the chronic side of CH, but I've been episodic for 10 years.  I'm having a shadow, bordering on a minor attack as I write this (it started about 5 minutes ago - I think I'm going into another cycle).  I've had more than a few Kip 10 attacks.  I just keep on keeping on, and try to concentrate on the things I enjoy in my life, to sort of counteract the "bad" that CH is.  As others said - having a neurologist who specializes in headaches helps too (I have one who meets these criteria).  When it gets rough - scream on this board.  Don't keep it bottled up.  It isn't good to do so.

My Fingers are Crossed for You,
Ellen

Hi Nicky,

I'm in the very fortunate position of having learned the most effective methods right here on this site of how to fight back the CH beast, and have been successful enough that very little "coping" has been required as of late.

If I hadn't taken this aggressive learn and take matters into my own hands approach I would've been doing a huge amount of coping with unnecessary suffering lately.

I have to acknowledge my luck so far of being an episodic, and of having some unexpected help with acquiring the imitrex that is one of the critical components of my battle plan.

And if you're a more extraordinary case who doesn't respond to meds, O2, RC seeds etc., a chronic sufferer, or in a profession that makes it difficult to use abortives such as O2, then my apologies, because certainly a lot of coping may still be necessary.

But for those with more typical cases of CH, I suggest throwing any energies you can that are currently expended on coping into learning how to just quash this beast.  Do everything you can TODAY to use that knowledge to fight it back to the point where coping with unnecessary suffering isn't such an issue.

(Anyone who trusts the knowhow of their doctor further than they can throw him/her, should plan on doing a LOT of coping IMO).

Nicola wrote on Oct 21^st, 2009 at 8:21am:

Im in my sixth year of cluster headaches and I just cant deal with it anymore .This thing seems to be detroying my life .how does everyone cope with every day life ? Nicky

Oxygen

Before 02, and during high cycle, I just learned (sheer force of will) to cope and live between the hits.  It wasn't easy, but with the support of my family and everyone here, I made it through the roughest time of my life.

Beth

Nicky-
What is your cycle like?  Are you episodic?  What meds are you on?  Is your doctor knowledgeable?
-Joni

Pain vs. Suffering--research support
(Posted, 1/7/07) 

SSRIs used to treat depression have gained a good track record but docs have been long aware of relapses when the med is stopped. Research has lead to a recommendation that the med be continued for up to 18-months after the depression has lifted because this reduces the rate of relapse. Parallel research revealed that this longer use of the meds allows our brain to "rewire" itself leading to better long term outcomes.

The article (available on the OUCH site) "Pain vs. Suffering" is based on cognitive therapy. These forms of counseling/psychotherapy have been strongly supported by good research. Now some evidence is appearing that these therapies act like the SSRIs to stimulate our brains to "rewire", affording protection against strong anxiety conditions. Bottom line: looks like it may be possible to alter brain functioning to build in a permanent reduction of the anxiety which besets many folks with CH. While the gods may not have made a final pronouncement yet, experience with cognitive therapy, so far, really supports its use to treat anxiety & depression. While using "pain vs. suffering" takes time, commitment, and practice, it beats endless use of benzos, etc.

"“My brain is generating another obsessive thought. Don’t I know it is just some garbage thrown up by a faulty circuit?” After 10 weeks of mindfulness- based therapy, 12 out of 18 patients improved significantly. Before-and-after brain scans showed that activity in the orbital frontal cortex, the core of the OCD circuit, had fallen dramatically and in exactly the way that drugs effective against OCD affect the brain. Schwartz called it “self-directed neuroplasticity’ concluding that “the mind can change the brain?’ (TIME, 1/29/07. Major article on the human brain.) (OCD is classified as an anxiety disorder.)
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Very interesting, Bob.  Thanks!

I'm into my 30 something years of CH, chronic for the last6-7 yrs, without support or knowledge until about 5-6 yrs ago, and without meds or treatment that worked for most of the whole time. 

I don't say that to minimize your pain, but to emphasize that I DO know where you are coming from.

I decided I had two choices, cope or don't.  I chose cope. 

On here I learned about Kudzu and high flow O2, and coping is pretty easy now.

Jerry

You LIVE between hits. I've been chronic since 97. Sometimes I have to take a day off for a "pity party" but for the most part, I LIVE and enjoy life to the fullest.

I keep O2 handy and when I have to stop and get on it - I do. I quit making apologies for my "condition" years ago and just accept it. If it bothers other people - then that's their problem not mine.

The hardest part is "accepting" that you have CH and that they ain't going away - then you learn to live with them and make the best of the painfree time.

I've been coming to this MB almost daily since 98 and try to help where I can. Sometimes others are worse off than I am (even when I think I'm in BAD shape).

In answer to your question - you just cope..

Hugs BD :-*

one thing i can suggest that helps me cope is prayer. praying isn't going to make the pain go away but it will keep your mental capacity high which is a  major part of the battle.

another suggestion is feed your brain. if you can't sleep, get on the net and research the hell out of cluster headaches. post questions. the more you know about your ailment the less scary it is.

grace wrote on Oct 21^st, 2009 at 9:09am:

Hang in there Nicky...we'll all go thru this togehter.  We'll get by with a little help from our friends!

If I were the only person alive, I'd probably have given up already and be dead.  The people here, my friends and family, they're reason enough to stick through this shit....
PLEASE, stick through them.

Somebody, somewhere, has been through worse and lived to tell about it.  Beleive that.

PS get some drugs, some oxygen, something. untreated, CH are known affectionatly as 'suicide headaches'. that's the sad reality.

off to get some red bull..... shadow turning into the beast.

good luck

Family, and Supporters here is how I survive.  That and a healthy sense of humor.

I know at times it's very hard to do (being chronic I know this) but you need to try not to let the CH rule you.  You know what it is and what's coming, just deal with it day by day and when the CH hit is over, jump right back into life.  CH or no CH life is a gift enjoy every minute of it that you can!

If you ever need a shoulder, advice or just someone to listen PM me anytime.

Hang in there!!!   [smiley=hug.gif]

episodic for 20 years--and I will tell you the answer to how to cope is OXYGEN

Thank you for all your kind replys .I think i was just having a bad week . I have made an appointment to see my neuro on monday and in the mean time he has given me a script for venlor,bilocor,tolep and molipaxin .Not sure if this will work but it is making me me feel very drowsy !When I see him n Monday I will ask about oxygen as he has never mentioned this to me .

Thanks again everyone .