Howdy

Names Perry and ive been dealing with these monstrosities since i was in jr high.  At first I thought they were really bad headaches, then I noticed they always happened at certin times of the day in my cycles...   almost to the point you could set your watch to it and even that young I knew a "Normal" headache never acted like that.  I was actually lucky enough to be properly diagnosed very eirly on but ignorant and had no clue what to do about it, not much on the money end either.   I was told there was no cure and not much of a treatment, so in my mind I was screwed.  My parents...   my dad new i was in pain and it bothered him, he also knew he didnt fully understand just how much pain, i know he didnt like seeing me like that.  My mom...  she knew...  she would watch me pace a circle in the kitchen for an hour or more, but she knew the only thing she could do it stay outta my way and leave me alone.  Dad, being the religious person he is, would always want to pray for me...   now dont get me wrong, Im a christian too.  Me and god did alot of talking during my cycles...  well..  mostly me begging and pleading thru tears for him to make it end.  but the last thing I wanted at that moment was for anyone to be touching me, let alone talking to me with bright lights on all over.  i know he wanted to help.

Learning to deal with these things has been an adventure, when I describe what I do to alieviate myself from even SOME of the pain and only for a few moments, they would look at me like, "are you insane?  or did you leave your brains behind on that wall you were smashing it against?"  I would then usually ask them what they think I should be doin to deal with it.  Most give me the standard migrane remedy or some other "headache" remedy...  I just shake my head and tell them as best I can, without gettin too pissed, what its like.  To me its similar to an ice cream headache amped up to sometimes what feels like 10 times that without the nice cold feel, shoved behind my eye and left there for up to an hour or two, and then it all ends like someone flippin a switch so you gotta run for the john or have a bucket handy cause your heads spinnin like it just got off the Tilt'a'Whirl.  I would sudgest a bucket, runnin while your heads spinnin can be dangerous.  Not to mention haveing to deal with them 8 or 9 times a day, with them lasting up to and sometimes over and hour long, at the PEAK of your cycle, which can last as long as 2 months or so at its worst...    at least I think thats its worst...  your exausted..  cause you dont sleep, cause they come for you when you sleep...  Now try your migrane remedy out on that and we'll see how long it takes for you to want to crawl outta your skin just to get away.  And its usually at that point I have to walk away or risk gettin angrier about it.  I know its not so much cause they dont understand, but because I cant make them understand.  And its frustrating cause all I wanted was for SOMEONE, ANYONE to understand.  God I felt so alone.

I thought about suicide quite a few times, tried a couple times...  well, i'm still here.  I've got various different methods of coping with them, and up till this point thats moslty what ive done...   cope.  No meds, other than the asprin or ibuprofen i would eat like candy, that did absolutly no flippin good.  I experimented with weed and found for the frist couple years it actually dulled the pain, but that kinda peeterd out and doesnt work quite like that anymore.  Other than that, its bang your head on a wall, a doorknob, hit it with a hammer, or your fists..   I read in someone elses post he locks his fingers behind his neck and squeese his head between his arms like a vice, I do that one too..  another one i do is to grab that nerve or whatever it was in my neck and squeese like hell, and as long as I held it, it was like pinching off a garden hose...   no pain behind my eye.  But as soon as I let go, BLAM.  I ended up doing somethin cause it changed the nature of my headaches since, now i feel them in my neck just as painfull sometimes.  The muscles in my back and neck tighten first, then comes the tingly across the top of my head at which point im lookin for a place to hide.  Then a dull muscle ache in my neck, and then the headache starts. 

So many things have changed over my 20 years of this off and on nightmare, my cycles have gone from 2 months on and 6 months off, Running that way for YEARS, to 2 months on 8 months off and then 10, then a year and a half, then two then 3 then 5...    I've been typing this post since 3 AM, its now 6:36.  Im in the middle of my newest nightly cycle, and they are the worst they have ever been dispite the fact its been so long I was about to celebrate their dissapearance for good...  My new wife, Tarijo, got a crash course on cluster headaches a few weeks ago, when I went from crushings cars, dissasembling engines and being a general pain in her butt, to pacing, rocking, punching myself in the head while crying, screaming, grunting.....  ect.. ect..  She is the ONLY one i have EVER allowed to touch me during my episodes.  I love her so much for being there for me.

I honestly have to say up to this point, I thought I was alone out here in hellsville.  She pointed this place out to me, but I wasnt interested at first...   I mean, what the hell could these people possable know about what I dealing with.  And then I read a few of the posts and get chills from the frist few I read.  As my heart starts doing loopty loops around my arse, it becomes pretty hard to contain myself, when I read posts that seem like they were taken from MY life.  Ive been dealin with this by myself for the last 20 some years...  Im tired.

Present membership here is 7670 with about 1800 of that number outside the U.S.

You are very much NOT alone! And as you read more you will find a real depth of knowledge/skill which will help.
======




 
Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
=====
And see the PDF file, below.

Like you, I have my lovely wife of 28 years to thank for finding this site. Sounds a little silly but this site justifies how much my head used to hurt! The idea of a group of people I can discuss CH with, without spending the first 10 minutes trying to explain my pain....awesome!!!

Yeah you're not alone. Now let's get you a treatment program, no offense sir, but yours sucks!

A good prevent med you take while in cycle, most start with Verapamil, I use Lithium, Topomax also is a popular one.

A good abortive routine. Read the oxygen info link on the left...trust me in real life it's not at all complicated to use and the first time you abort a hit in 6-10 minutes you'll say "why the hell did i wait so long?"

So start reading like crazy, educate yourself....and then your doctor. This is NOT a condition you sit in front of a doc and say with a hopeful face, "fix me." They will tell you to not eat chocolate, not drink wine, stop smoking, lose weight, and stop being so stressed. NONE of which will help you with CH.

Welcome home.

Joe

So last Monday we took a trip to the local hospital.  They gave Perry an i.v., oxygen (they brought in the wrong mask at first-I told the nurse it had to be a non rebreather mask!-glad she listened-we now have it at home), and a shot of imitrex.  He slept. We waited for the doc to come back in. She came with a script for cafergot.  Seemed to get rid of the tingles.  Monday night and Tuesday nights he slept soundly. Woke up all bright eyed the next morning.  All was right with the world again   Then came Wednesday night.  Not so great.  Then they got worse.  And worse.  And the cafergot wasn't helping at all.   
I called the doctor back on Monday to get another appt.  I thought-the same routine as last Monday and a new script to try something else.  Instead she called back with an appointment for a good neurologist in S.F. who had dealt with these before and would have samples of some of the other meds available for CH.  In the meantime (the appt was 4 days away-that's 3 NIGHTS!) a new script was called in for Prednisone.  8 to 1 per 3 days at a dose.  Got it too late to take them Monday-according to the pharmacist who said it would keep him up all night.  He could've just as well taken them-he was up all night anyway.  He's been taking the welding torch to the side of the house and sucking the O2 out of that without a regulator or mask.  It seems to help.  Just got to get that regulator.  We run a salvage yard so we have O2.  I did try for a script for the oxygen through the doc, they haven't called me back yet.  I'm thinking that the neurodoc will give us one on Thursday if nothing else.

Thank you, babe, for finally checking this out.  I'm so very glad you did!

Quote:


Quite a lot as you have found out my friend.

   Please keep reading and please thank whomever directed you to here.  I loved your description of your Mom.  She was doing the exact right thing.  Most Moms do.  Your Dad...well praying is fine but he really needs to be educated a little on this condition.

  People here...we all understand.  We have all been through it personally or have a husband/wife who goes through it.  No one here will ever dimisnish your pain as we have all been through hell and back.  I've been chronic for 23 yrs. now.

   You are no longer alone in this.  We are all family here and you are our newest member, so welcome.

    One of the abortives we always push here is pure oxygen.  A non- rebreather mask with a regulator that goes to at LEAST  15lpm.  (I have one that goes to 25, and I can abort a HA sometimes in less than 10 mins.)  Have you looked into this?  There is an 02 link to the left of here in yellow.  Please read it and feel free to ask any questions of us.  We are here to help.  That is why DJ started this site 12 yrs. ago. 

   Linda

Perry, glad to have you here. Kudos to your wife for finding us and bringing you here.

Christy

Wow....

That was a great post and great description Perry.

I'm glad you found us and know that you are in good company. It's great to meet you but I'm sorry it has to do with this horror.

Stick around. Pay attention to Bob Johnson and some others They know what they're doing.

Good luck.

Charlie

That's excellent!!!

Vigorous (sp?) exercise, caffeine and energy drinks such as Redbull can help with that tingly feeling you describe (shadows).

Wishin you all the very best!

Kate

Thank you Kate for pointing this place out to my wife, and thank you to my Wife for being stubborn as usual until I checked this place out.