My little history:

Age 6 (yes, that young):  Diagnosis:  Psychosomatic night terrors.  Treatment:  A new puppy, a Mickey Mouse nightlight, a bedtime  assurance and check that no monsters lived under the bed waiting to beat me in the head, and firmer discipline about making me stay in the bed.  Result:  Treatment deemed a resounding success when headaches stopped in 6-8 weeks.  (Side effects/benefits:  puppy was very cute, licked my face when attacks abated).

Age 10:  Diagnosis:  Allergy to new tree planted in yard.  Treatment:  Tear down tree, put patient on allergy shot regimen.  Result:  Treatment deemed a resounding success when headaches stopped in 6-8 weeks.  (Side effect/benefits:  found out I had a slight allergy to ragweed -- LIKE WHO DOESN’T?)

Age 13:  Diagnosis:  Pinched nerve due to scoliosis “C” curvature in lower spine.  Treatment:  Instead of brace for just lower back, full-on brace including neck support to be worn through puberty.  Result:  Treatment deemed a resounding success when headaches stopped in 6-8 weeks.  (Side effects/benefit:  A total brace-wearing geek through high school).

Age 18:  Diagnosis:  Allergy to MSG due to mother’s newfound love of Chinese cooking.  Treatment:  No more Chinese food.  Result:  Treatment deemed a resounding success when headaches stopped in 6-8 weeks.  (Side effect/benefits:  gained 5 pounds when mother switched to Italian food).

Age 23:  Diagnosis:  Too much exercise.  Treatment:  No exercise for 4 weeks.  Result:  Treatment deemed a resounding success when headaches stopped in 6-8 weeks.  (Side effects/benefits:  put back on the 5 pounds I had lost).

Age 27:  Diagnosis:  Not enough exercise, too much time in front of a computer terminal.  Treatment:  More exercise, make workspace more ergonomic.  Result:  Treatment deemed a resounding success when headaches stopped in 6-8 weeks.  (Side effect/benefits:  fed up with Western quacks, began to seek alternative remedies, see below).

Next 7 years:  sought treatment/advice/diagnosis from range of alternative practitioners including acupuncture, acupressure, massage, reiki, rolfing (boy was that NOT fun); primal scream therapy; got audited by a scientologist who told me to throw out all medications and “will” them away through positive thinking; herbal teas made from God knows what; drugs legal only in California and a host of others not legal anywhere; Deepak told me to stop thinking of myself as having headaches; astrologer said it was the dual combination of being born under an Aries and Dragon sign, both ruled by the head; a Wiccan had me bury an amulet with a lock of my hair in it during a new moon.  But my all time favorite?  I was Marie Antoinette in a prior life, and still feeling the pain of the guillotine in this one.  I went to France to make peace with the peasants.  Upon return from France, rewarded with a mother of a 6 week spell. 

Age 34:  FINALLY DIAGNOSED with CH after brain scans, MRIs, sleep deprivation studies, blood panels, kinesiology and psychological testing.  Treatment:  Oh, I wanted a proven treatment?   Ummm, well, that’s where it got tricky.  Tried cafergot, sucking oxygen like a TB ward patient, verapamil, lithium, maxalt, imitrex, neurotin, ergotamine, prednisone, and tons of others.  My insurance company denied treatment for all but Motrin without full-on waged wars (until the treatment went generic of course), but I gave it all a try (and prayed the neurologist had a few free samples).  Theory:  if it works, great.  But can’t expect it to work the next time.  So I check the CH.com website on a regular basis during spells b/c I know there’s sympathetic voices, and people like me, giving anything a try, and I want to know what they’re ingesting these days.  In fact, just read a new post and am thinking of seeing if my insurance company will pay for a penile attachment implant because someone feels having a hard on for several hours a day will do the cure (God love you if that works – I’m jealous).  Will be mainlining D3 and anti-inflammatories through a beer bong (certainly can’t be drinking beer out of that thing these spell-ridden days).  Today I was given Lyrica (it helped the last time) and Frova (which sounds like a character from a Tolkien book, but hey, I’ll try it) and an oxygen prescription (which no doubt will cost me the equivalent of a new car).  Personally, I’m thinking the diagnosis from when I was 6 was spot on – only the monster under my bed is real.  It’s Freddy Kruger who waits for me to fall asleep so he can rise and jab those 10 blade-ridden fingers right through my skull.  Maybe I just need a new puppy.  Meanwhile, have cancelled all plans for the next 6 weeks and told the neighbors not to be concerned if they hear loud screaming coming from my house at 3:00 a.m.  It’s just me, bartering my soul to the devil.  Only he never takes the deal.  He knows my head would come with the deal and he’s smart enough to take a pass. 

All to say:  thank you all for being here.  It really is a help knowing I’m not alone.  There’s other people trying stuff, posting recommendations, new findings, and just general sympathies.  I think we all know the reaction we get when we tell co-workers, friends, family about it (I’ve stopped saying cluster headaches and refer to them as brain seizures) because usually the response you get is laughable – “oh, I get headaches sometimes too.  Try taking some Excedrin Migraine.  That always helps me.”  Thanks you guys! :)

I like your humor and way with words, Kristie. Great writting, great story, just sorry your have live it.

My favorite was the therapist in the Mu-mu with the obligatory ID badge hanging around her neck on the peace sign lanyard.

"The pain is part of who you are. Embrace it. Learn to love it"

That peace sign lanyard almost became a liability to her.

Your post was fun to read but I'm sorry you have had to deal with this horror.

People here probably hate it when I say this but I was never mis-diagnosed. I was seeing a neurologist regulary to deal with epilepsy. I described them in detail and he said that what I had was cluster headaches. This was 1969 and there wasn't much I could do about them. They lasted no more than 20 horrible minutes and within a four or five weeks, they ended. The doctor wasn't at all surprised.

For the next 23 years, this happened every fall and spring. I had some small success with Inderal which not many people have.

Anyway, in 1991, they pretty much ended. I was 45. It's been 20 years since I've had a real hit. I get a little zinger a couple times a year but it lasts for a few seconds. However, this technique that I've posted several times saved what's left of my sanity:

I am not sure what mechanism is triggered by this
but whatever it is, it at least indirectly helps kill the pain. This technique has nothing to do with meditation, relaxation, or psychic ability. It's
entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. I thought it worked
best with my left arm. Increased circulation to this area will result in a reddening and warming of the hands. As silly as it sounds, try to think of it as
filling your hand with redirected circulation. The important part is that it has to be done without interruption until it works. Do not give up in frustration.

It may not work on the first try. Sometimes it can work quicky but it almost always worked after a time. Try experimenting between attacks. You will find that it gets easier with practice. I was given less than five minutes instruction in the use of this method. The doctor, while placing his arm on his
desk, showed me that he could slightly increase his arm and hand circulation.

After several attempts, I was able to repeat this procedure and use it successfully. I had about a 75% success rate shortening these attacks. My 20
minute hits were often reduced to 10 minutes or less. Once proven that I had a chance to deal with this horror, I always gave it a try as I had nothing to lose but pain. I used to try to imagine I was literallypushing blood away from my head into my arm. Use your imagination.

There is one man who wrote that his standing
barefoot on a concrete floor shortened his attacks. This draws some circulation away from the head and sounds good to me. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. At least costs nothing, is non-invasive, and can be
used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain.

It's important to know that this has nothing to do with psychic ability or meditation. It's physical. I hope this technique is helpful and I wish
you the best of luck.

Charlie

Quote:

an oxygen prescription (which no doubt will cost me the equivalent of a new car)

Surely you didn't get that information from THIS site, because it is untrue.  Compared to pharmaceutical meds we take like Imitrex..oxygen is quite inexpensive.  Depending on which 02 supply place you take your script to, of course.  Many of us here use either Lincare or Apria.  Living in Los Angeles you will find several listed near you.  If your Dr. won't prescribe a regulator that goes to 25 lpm...you can buy one on E-bay for 25-30 dollars.   I told Apria to leave my Ins. Co. out of it entirely and have a solid assurance with the 02 supplier to pay no more than 10.00 for each refill I get.  (E-tank)

Last time someone told me what they pay out of pocket for Imitrex it was almost $200.00 for 6 of the nasel sprays, and a little less than that, for 2 of the injections.

Linda

Thanks you guys!!!  The peace sign lanyard -- LMAO!  I've yet to encounter that one.  Enough turquoise jewelry to make a Native American jealous, yes, but not the peace sign.  Charlie, I love your idea and will try it.  I've tried exercise but found that raising my blood pressure, pulse rate or body temperature can make them worse, but I'm going to focus on the circulation thing.  If they just abate the pain and/or bring it down to a Kip 5 I'll be happy.  And Linda, you're right, I didn't look at the costs.  What great news that it's not expensive -- I just made an assumption that it would be expensive given that everything else is -- but I got even better news this morning at 9:30 -- the oxygen company called to say my insurance WILL be covering it and it will be delivered tomorrow.  Now that I understand the proper techniques for its use it might be successful (the one time I tried it -- ineffective, but I had the nose plugs and my neuro thinks this was a waste of time).  I am happy to also report that I slept through the night last night.  I took the Lyrica and Frova.  It might be a coincidence (about every 5th or 6th night I seem to get a "break") but maybe this might work.  I'll keep you guys posted.  I know the Lyrica doesn't work for many, but the last time I had a spell it did help.  Then again, sometimes you never know if something worked or if the spell was just coming to a natural end and you timed the treatment right.  And, as I always say, as HORRIBLE as this condition is, at least there's always a light at the end of the tunnel (for us episodic sufferers) and I'm always focused on just "getting through the next 6-8 weeks but know there will be relief eventually).  It gives me great compassion for people who suffer from things where there is no end in sight, and it will be a ongoing life condition, with no remission period. I simply do not know how chronic CHers can get out of bed in the morning wondering if another spell will hit. 

Quote:

I simply do not know how chronic CHers can get out of bed in the morning wondering if another spell will hit.

Not "IF" Kristy...WHEN.   ;D

Kristie wrote on Feb 29^th, 2012 at 3:40am:

I’ve stopped saying cluster headaches and refer to them as brain seizures because usually the response you get is laughable...

Go to the CH Specific board, page 30, and check out a thread called Dopiest Responses to CH.

Oh yeah...delightful post!...and the all-star responses put a smile on my face. Welcome home.

"Not "IF" Kristy...WHEN.  ;D " (Linda)

Maybe ya have to be a "cracked-head"...but that there is funeeeeee.

Best,

Jon

Linda_Howell wrote on Feb 29^th, 2012 at 2:48pm:

Quote: I simply do not know how chronic CHers can get out of bed in the morning wondering if another spell will hit. Not "IF" Kristy...WHEN.   ;D

And sometimes they can make their appearences at the same time of day to the minute. I remember actually getting to appreciate this as it made getting ready for them so much easier than when they were semi-random in when they appeared.

What is important is to live and enjoy life between the CHs, plus get good preventives and abortives in place to limit and control the CHs.

You might also try Melatonin at night (I take 10mg). It gets you thru the REM sleep and keeps the CH from hitting during the night (for a lot of us -- nothing is perfect  :)).

And I love your sense of humor.. As long as we can laugh at ourselves we can get thru this.. It just hurts to damn bad to cry.. :-*

My most rediculous diagnosis was from an army PA that didn't know how to stay in his lane.  After seeing me go through a hit by chance, he informed me that my neurologist was wrong and that it could only be an allergic reaction to grass.  The funny part is that I was in the Anbar province in Iraq, in an area where I never saw a blade of grass.

I was a Navy brat so I was seeing military doctors for most of my life.  Surprised some of them didn't think my six year old self was a victim of Agent Orange.  Oh, I have no doubt you were allergic to Iraqi grass.  That sounds entirely plausible to me. 

"Go to the CH Specific board, page 30, and check out a thread called Dopiest Responses to CH." 

Okay, that old post just made me LMAO!!!  Thank you for the link.  Much needed laughter.  I think I might have to post some similar topic –- it will be old hat for you lifers and wonderful long-time posters, but maybe us newbies could have a laugh and see similar woes.  I forgot to mention my other all time favorite proposed remedy.  And maybe ya’ll have experienced this one too.  One time, after three nights of me getting out of bed and going for a “walk” down the block (I didn’t want to scare the bejesus out of him by screaming in the house and slamming my head on the living room hardwood floors), my boyfriend said “why don’t you come back to bed?  I have just the cure (said with that come hither tone).”  Besides running the Boston Marathon, can't think of much else I'm NOT in the mood for trying as a treatment.  I said, “hey, you know what?  In about five minutes, come down to the living room where I’ll be trying to deal with this.  I guarantee that wood you're sporting will be gone.”  We broke up later, but remained best of friends.  Years later he asked another guy I was dating “so, have you seen the Linda Blair thing yet?  Man, whatever you do, do NOT suggest ANY cure.” 

Kristi - that was a "good ONE!"

Want some really good laughs - go back to the archives and read Drummer and Kip's post - Kip's Rothweiler's a classic - we're still trying to adopt the pups.. And Drummer has some really good "how NOT to's" that are hillarious. Think you're trying to top them - and doing a good job of it.. Keep it up -- I need a good laugh in the mornings..  :-*

Barbara, I'm dying to ready that one.  How would I go about finding that (I'm still trying to figure this message board out and there's so many subcategories I don't know how to search)?  I've seen some things they've both posted and they are hilarious.  In fact, here's an idea.  They should take a comedy show on the road, aimed just for CHers.  Of course, the drag would be that they would sell 100 tickets to all of us, but 75 would of us would have to cancel b/c we were in the middle of an attack. Unless they could do their comedy show at 2:00 p.m.  Needless to say, it could be at a venue that serves no alcohol.  In fact, an oxgen bar would work nicely.  LOL!

AubanBird wrote on Mar 1^st, 2012 at 8:06am:

My most rediculous diagnosis was from an army PA that didn't know how to stay in his lane.  After seeing me go through a hit by chance, he informed me that my neurologist was wrong and that it could only be an allergic reaction to grass.  The funny part is that I was in the Anbar province in Iraq, in an area where I never saw a blade of grass.

Is Iraqi grass better known as sand? That might explain it.

I tried to find Chuck's fight with the toilet seat, but didn't find it.  That was another good one.  Lady E used to tell some funny stuff too.  I miss those days.  Now I've got to try to find the CH safety kit story too.

Jerry

Edit to add:  I found Drummer's Cluster Safety Kit story.  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Jerry, thank you so much for finding this.  I just about fell over laughing about this.  But doesn't Drummer know about a recent remedy that was posted?  He should have made Mr. Winky stand up and wave -- supposedly that works.  If anyone can please tell me how to find those old posts I would love to read them.  I honestly feel like for the first time in my life there are people who understand what I'm going through (I've never met anyone who had CH).  While I am sad there are enough of us in the world to warrant this wonderful website it is a relief to see how others are laughing to get through this.  And when I read these things, I can totally relate to that COMPLETE panic that hits when you're rushing to get to whatever it is that helps abate it.  Naked, lights off, begging for mercy, scrambling in that two minute window before it escalates to a 10.

I'm not worth a darn at posting links (that's on my agenda to "learn" sometime this century) but go to the archive back in 99 and just start reading... there's some funny stuff there..

And you NEED to meet some Clusterheads.. it's an experience.. In July of 99 Five Clusterheads decided to meet (the first Clusterhead convention) and we did - in Drummer's garage in Rochester NY. My kids thought I was going off to meet some axe murderers and were agast at the idea that I'd fly to NY to meet people I'd only met on the Internet, but it was one of the greatest experiences you can even imagine. We all bonded instantly.

Since that time.. lordy, I've gone to places (like FL for a Sat. night cookout - well, we stayed about a week, but ...) that were spur of the moment things that were wonderful with people I'd never met and it was great.

I was in LA last year and when I got to the hotel a man yelled, "Barb" and it was a CHer (Lenny from LA).. he was wonderful. Point being - in all the years since Drummer's garage - I've never met a "stranger" with CH and no axe murderers either.

I see you're in LA... Lenny is in LA - get in touch with him and go have coffee.. he's a great guy (I talked to him yesterday). It's an experience you won't regret and you'll want to meet more and more of us..

That got long-winded didn't it.. But meeting another CHer is really an experience you don't want to miss if you get a chance.. :-*

I think Lenny might be an axe murderer...just sayin... ;D....but he and that sweet young thing he carries on his arm are fine company for a beer and a long talk.

Joe

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how come mine didn't come out in "blue" like ya'll's did? Anyhow here's a link to another "story" from July 29th 1999.  :-*

Wow - it did come out "blue" when I posted it... I'm doing MUCH better... DJ give me a brownie point ;)... I'm gonna get the hang of this 'puter thang before my 100th birthday... :-*

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:-*

LMAO!!!!  Barb, thank you for posting that link.  I live in the urban area of Silverlake in Los Angeles, yet we have coyotes roaming the streets at night (poor things have been pushed down from the hills).  On several nights, I have gone for "walks", terrified I would be attacked by a coyote.  But on some nights, when I'm in a Kip 10, I'm looking for one, begging him to eat me. 

And I'm excited about meeting a fellow CHer.  And even more thrilled that Guiseppi thinks he might be an axe murderer.  I'm just hoping his chopping aim is true -- directly at my right temple. 

Thanks Barb for both posts.  I had heard about Kip's dog adventure, but had never seen the post.  That was funny.

However, your post about the meeting in Drummer's garage was unfair.  I'm having trouble seeing the screen.  I remember the first DavCon so well.  Walking in that room and seeing Thomas, I KNEW he was a clusterhead.  I don't know how, but I knew.  We didn't shake hands, but gave each other the biggest hugs.  (I was looking for one of my ribs the next morning)  The others I met that day, Woobie and Ramon, Blake and Jackie, Gina, Bruce, Lady E, Pigeon, and a few others I can't call to mind right now changed my life.  This board saved it, but meeting these people in person changed my whole outlook.

The next two years I drove through Davenport either the weekend before or the weekend after, but could not get there for the get together.  The feeling  of abject loneliness when I drove by the Best Western and kept on going because no one was there was funerial.  I hated to miss the convention last summer and St Louis in Jan.  Need to get together with some clusterbuds soon.

Jerry

Don't worry about meeting up with Lenny.  He's a terrific guy.