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!

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.

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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

Quote:


Not "IF" Kristy...WHEN.   

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

"Not "IF" Kristy...WHEN.  " (Linda)

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

Best,

Jon

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..

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.” 

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!

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.  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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..

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

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