heythere,,,new to site,,,ch sufferer for 3yrs,,,53yrs old..
came to this site,,read the home page and wept like a child,,,my life,,,my wifes life,,as we try to figure this demon out,,,you mean im not alone with this?????
only three years???strange,,i spent my entire adult life up to about 3 years ago being a functional narcoleptic,,yes,,medical man dx'd,,,fallin off at will,,,but the worse,,and i wonder,,was the catapletic events,,,i couldnt laugh,,cry,,have sex,,without feeling like i was "blackin out",,,strokin or sumpin,,,hey it was fun with the sex,,lol,,,but a few years back its like my body "turned over" and the sleep episodes deminished and the catapletic episodes subsided,,,and,,,enter the beast into my life,,,
could there be an association???who knows,,just thinkin,,
i would rather be sleepin,,,lol,,,btw,,
so,,,i am episodic ch er,,,usually day episodes,,great for a self employed small businessman in the construction trades..lol,,usually early fall,,3-4xday,,,imitrex kicks booty,,
insurance company wants to practice medicine,,,i could care what they cost,,,give em to me...no i dont over use,,
under neuro care,,, his regime,,,verapo sr ,,,lithium tid,,,topramx bid,,and amytrip at hs(hate the amy,,makes me feel to stoned in the am),,,
self medicate with medical-herbouana,,,lol,,,go ahead bustme,,they already did(6potscostme$10klol),,,lol...
it helps,,,sorry if this is inappropriate,,,you can remove,,
i dont know what is allowed yet,,,and i am a turd,,(btw,,yes that is what my wifey calls me,,my riding club calls me,,my momma calls most of the time,,imagine that)
we do a prednisone oral burst and taper when things get crazy crazy,,and this usually buts the beast back into his cave for a bit,,,but i have ended up in the hospital for iv pred when i was having 4-6qd,,,it is good to have a neuro who is aggressive with these things,,,i think??
anyways,,,enough of the rambleings,,,
i am pleased to have found this site,,
i am excited to be able to refer my family,,and my freinds to here to maybe give them an idea of what this lifestyle is about..
i am excited to show my neurologist this site and the ouch site as well to encourage other sufferers the opportunity for outreach for information,,,networking,,and most important with this malady,,,support,,,
thanx to all who have allowed me these tears of joy,,joy from the pain i thought i suffered alone and noone else really new,,,
peace to all,,,
turd
....7mths and waiting,,,(it never excapes your mind does it?)

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Given the complexity of your history, has your doc ever considered getting a consultation to help pin down the situation? Useful to have a fresh perspective at times.

I'm not suggesting that any of these disorders are affecting you but only as examples of how Cluster can be a good mask for other, sometimes quite serious, problems:


Link to: cluster-LIKE headache.

Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

Hiya turdster  :),

Hey are those imitrex injections you're using? Asking because this tip on how to at least double the amount of CH aborts you can get from them has saved me and others, and it could really help you out too: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Hang around here for just a little bit and you'll see that everyone is just cuckoo for oxygen. Cuckoo for Cocoa Puffs too, but that's a whole other topic.  :D

The new method for administering O2 to abort CH attacks as outlined here START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE really works, is relatively cheap, and is non toxic of course.You'll also want to look into high doses of D3 as a preventative, and if you're going to be ingesting illegal herbs, well people have been obtaining powerful prevention results with psilocybin, etc. Here's a Newsweek article all about that and CH: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

bob,,,worked in the med field as a pa for 25 yrs,,(guess i still hold the paper,,just switched gears a few years ago,,lol,,burnout)had every workup,,and curbside consult known to god and man,,lol,,
complicated hx,,indeed,,
but like i said,,whats major weird,,my narcoleptic sx's have subsided in the last five years and the ch stuff has come on big time,,hmm,,,like my bodies turnin over like a lake in the spring...its hell gettin old,,lol
re:psycodellyics...shoot man you tryin to kill me,,,
i vaguely remember this kegger in '72,,,,,

Hi and Welcome

  I too cried my eyes out when I first came here (2/02), after 13 months of mis-diagnosis, non-working meds, CTs, MRI.  I'm a "head trauma" CHer (I think 16-20% of us).... my attacks started 1/01 after I nailed my noggin pretty good.  By the time my wife found this site for me, was having 6-8 attacks daily, sometimes 3-5 at night, most 20-45 min , kip 5-9, and some 1-2 hr horrors.  This place saved my life.

  Took info from this site, got a script for Verapamil (preventive) and 02 (abortive).  Wanted Imitrex, but doc (correctly) refused, due to some heart issues and high cholesterol.  Within a few weeks (at 240mg Verap) had my first pain-free day . . WONDERFUL! . . had three attacks that night, but had the 02 to kill them within 15 min.

  I am chronic, but last two years have been mostly PF . . . only used 30 "E" tanks in 2010.  My preventative for last six years has been water therapy (see "water X 3" link on left) . . . it IS NOT EASY to do.

  DO get 02 as soon as possible . .  it's a godsend for most of us . . . takes a bit of practice, but VERY effective if used at the first sign of attack.

  Read, read, read . . . and welcome to your new home.

    Be Safe,   PFDANs

      Richard