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Dylan the potato

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I've been thinking a lot about  the psychological toll CH can have on someone. Even before CH suicidal thoughts always seemed to follow me wherever i go. I always had my doubts in myself. I've always had doubts i was strong enough to be able to keep going.  I had trouble coming to terms with having CH and that it even existed.  The pain was always a reminder that this is real. That i have this. That too many people have this.  I'm still pretty new but I'm not quite as helpless as i was before i first joined I've been finding my way.   I don't have much in the way of super helpful advice for anyone or even much to say that's very noteworthy as i haven't quite gotten the hang of all this yet. Still at the very least i want to say to everyone who's new to this or that is struggling in general please hang in there. Stay strong and don't give up. We have to take this all one day at a time and keep pushing forward. You are not alone. Don't doubt yourself or your resolve. You ARE strong.  I see so much unity in this community and so many people helping each other out whether it be with advice  straight up emotional support or both. This is an awful thing to have but its brought many of us together. That is something and whenever i feel i have no one who understands i like to read what people are up to here. For everyone out there,you are an ox...a strong,resilient,antique breaking ox. 

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Hey Dylan,
Great post and positive message.  The topic of suicidal thoughts is of particular interest.  As a CHer since 1994 and chronic since 2005, thoughts of "ending it" were present at times after turning chronic, particularly after starting another new preventative that didn't work.  It wasn't until years later after discovering the wonders of vitamin D3 in preventing my CH that I started connecting the dots between suicides among CHers and the drugs they were prescribed to prevent their CH.

The big dot to connect came from far left field,  It centers on the School Shooters.  Most are young kids and all were either taking prescribed psychotropic drugs or had recently stopped taking them.  Even the Las Vegas shooter had been taking a psychotropic medication.

These drugs are widely prescribed to treat psychotic, depression, bipolar, seizures, anxiety, panic and obsessive compulsive disorders.  Many are also prescribed "off label" as preventatives for cluster headache. They include drugs with trade names like paxil, prozac, celexa, luvox, xanex, topamax, neurontin, depakote, zoloft, wellbutrin, propranolo and the list goes on...

All these drugs have a few things in common.  Their side effects are frequently worse than or exacerbate the very symptoms or conditions they're used to treat. In the majority of cases, these psychotropic drugs have mind altering, psychotic effects that leave the patient in a disturbed and confused state.

I've known or knew of three CHers who ended their lives in the last 12 years.  All were taking psychoactive drugs to prevent their CH.  Granted this is anecdotal evidence at best.  That said, I'm convinced our disorder has been given a bum wrap in being called the suicide headache when the real culprit was likely the psychoactive drugs CHers were taking.  Any old hands out there willing to come up on this topic?

Take care,

V/R, Batch


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It is a notion worth consideration.  As always we are chasing "numerators in search of denominators".  Specifically as regards clusters.  The moniker "Suicide headaches" was attached long before psychotropic meds were handed out like candy.  Cluster headache suffers have all life's usual burdens to wrangle while dealing with lost opportunities, wrecked relationships and seething pain.  Removing the drugs from the picture, the disease burden of clusters is pretty high...enough to evoke consideration of self destruction.  The use of some of these meds may constitute a sort of tipping point but the jury is out on the magnitude of their contribution.  In the shooters situation these folks were already predisposed to some type or another of self destructive behavior or demon which led to the intrusion of mental health "care".  Unfortunately our current system is ill equipped to provide proper evaluation and treatment of so many mental health issues.  Add that to the fact many resist treatment, play with their meds, add other substances of abuse to the mix and have piss poor support systems.  You have a recipe for disaster.  All they need to do next is practice on a first person shooter game and then go out an reek havoc on peoples lives.  If you consider the extremely high proportion of individuals on these meds and the very small number of incidents coupled with confounding factors it would be hard to draw a straight line.  That said if you have classic clusters (episodic or chronic) there is no need for these mind pollutants.  The treatments that appear to be most effective, D3 regimen, O2 and indoleamine hallucinogens do not have these issues in an otherwise mentally well individual.  Don't you owe it to yourself to try what decades of real life experience endorses?. 

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Potato-dude that is some serious heavy dialog right there, not something a youngster should be worrying about yet here we all are. I'm proud of ya, takes nuggets to put that out there... impressive. I am pain-med free since I'm an addict, so when they hit... I do it the hard way. Every CH I get past just makes me stronger, now I yell at them "BRING IT FOOOL"! So, do the homework, get the O2 with the right mask (see my thread for the deets) and keep them from coming. When they do show up like a fart in an elevator... Keep that drive, make cluster's your little beyoch and embrace the suck my friend... and you will go far. Reeeeally good sense of humor also helps a bunch too.

If all that fails, just look at this and laugh your butt off...


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