To: ericummins@yahoo.com
Sent: Tuesday, May 26, 2009 11:36:47 AM
Subject: CH

I found your email address on the CH.com website let me know if this is up and running still for you if so I have a couple of questions.

Thanks



From: eric cummins [mailto: ericummins@yahoo.com ]
Sent: Tuesday, May 26, 2009 9:56 PM
Subject: Re: CH

hi, i think the site is up and running fine, i get news letters all the time, but i think you want to try "Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ". it is the most up to date one. it first started as the "Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ", but it's a .com, so you get all those ads. but both sites are a wealth of information for some one thats been diagnosed whith CH or family of some one that suffers from it. i will answer what ever questions i can for you. Thank you for contacting me.

Eric Cummins



To: eric cummins <ericummins@yahoo.com>
Sent: Wednesday, May 27, 2009 8:32:02 AM
Subject: RE: CH

Thanks for getting back to me.  My husband has suffered with this unknown pain in his head for the better part of 20 years.  Due to the fact that he was on his own at 15 and had no insurance he had just learned different ways to cope, but as I am sure you are aware he thought for sure it was a tumor and that it would eventually kill him.

About 6 weeks they began to get worse to the point that he couldn’t get up to go to work or simply doing anything but pace.  By last Tuesday I had him in the ER.  That was the first time that we had learned about cluster headaches.  We had done a lot of research but just don’t know where to go next.  He sees a physician tomorrow, but I am so afraid they are going to try to throw him some pills and send him home (he is not a pill taker and most doesn’t work anyway).  He was referred 2 weeks ago to have all of his teeth removed.  Of course the first dentist said we need medical records and $4000 up-front.

I am honestly hoping that once they are gone then some of the pain will lighten up but I am sure that the teeth are just a factor not a cause or a cure.

We have talked with Social Security and the Medicaid office trying to get some financial assistance but of course that is a slow process.

I am just grasping at trying to find some way, someone to help him.  Seeing him suffer for 37 days straight is hard –no other way put it!!

Thanks for any help.  I will do more research on OUCH.  I was there yesterday but only for a few minutes.



----- Forwarded Message ----
From: eric cummins <ericummins@yahoo.com>
Sent: Wednesday, May 27, 2009 7:03:03 PM
Subject: Re: CH

I first want to say that i feel your pain, i read a lot of the testimonials, and i tell you it makes me want to cry and sometimes does. i myself started to get migraines when i was 16 and suffer from them still to this day, but for the most part they are in remission. but at some point after turning 28 i started to get these pains that felt like someone had taken my migraine, rolled it up in a pin point spot on the right side of my head and multiplied it by 100. up to that point i thought migraines where the worst thing that could ever happen to someone, then i learned what REAL pain was. there is a scale out there on OUCH for the severity of a cluster from 1-10, and i have to say when i got to the point it was a 10 the emergency room is the only place for me, if nothing more than to knock me out until the pain passes. they are called cluster headaches not because of the clustered effect they feel like in your head, but because they come one after another for days on end, if not two to three times a day for weeks on end. the best way i can describe it to people that cant understand what its like is by asking them if they know and remember what it feels like to get your hand burned by a fire, then imagine what it would like to not be able to pull your hand out of that fire for half an hour. and i think even at that most people will never fully understand the pain that's involved. i know all to well the crying, and pacing, the crawling on the floor and praying for a death that never comes. i for one no longer believe that there is a god, because no god i know would keep doing this to a person. I'm just agnostic now, i need proof that he or it is real. you will find a lot of information through the OUCH organization, but the truth of the matter is that science is just now starting to understand the mechanics of a migraine, let alone a cluster attack. there are so many medications, and even a few different surgeries ( i do have to say that the teeth pulling on is one of the funniest ones that i know of. the pain radiates through the trigeminal nerve making it feel like its coming from your teeth, or even your eyes and sinuses). i have tried most things and medications over the years, and have found little if any relief from the attacks. hell I've seen over 7 neurologists, done the MRI's, the CT scans, the PET scans, EEG's, EKG's, and every battery of blood tests that you can ever think of (one ER doctor thought that i might have had spinal meningitis, and did a spinal tap, let me tell  you, that was a fun one, ha ha). i don't say these things to depress you, but to let you know what to be prepared for when you start down this road, i was big on hope but short on any real relief or cure. i can tell you one thing that i have learned, i always thought that it had to be a physical problem, but almost two years ago my wife left me( which i can tell you from experience that CH can be a real test on a relationship), and my migraines and clusters went into remission. you see when she left me it was such a shock and blow, that i started to get anxiety and panic attacks, and at that point i no longer got migraines or clusters, telling me that it has a lot more to do with physiological and brain chemistry then i had ever thought before. now instead of  taking med's ever day for cluster headaches, i take meds every day for anxiety. not much of a trade off but i would rather have a panic attack then a cluster any day. that is not to say I'm completely free, i still get the occasional migraine( i had one just this last Monday) or cluster( had one of those about 6 weeks ago), but it is a far cry from the point that i was getting clusters so much that i couldn't work for almost a year. now when i get one, i think to myself, "oh god, are they coming back again!!!"..
   so if your husband is a lucky few, he may only have this one bad cluster of cluster headaches and never have them again. the key is to break the cycle, and i cant stress that enough. if you can get him out of the cycle for a few days then a lot of the time they stay gone until next cluster season. for some its spring and or fall. for others it doesn't matter what time of the year it is. as for me i had tried most anything to break the cycle, up to and including acupuncture, but they always came back. it was the days of not having them that where the worst, because i was always in fear that i was just about to get one. wondering how bad it was going to be, for how long it was going to last( oh and by the way the average CH lasts for about half an hour, they are intense but at least they are short), and if it was going to be the only one i got that day. i can say that when you end up so self absorbed about stuff like that, the whole family suffers.
   Its just a suggestion, but i would say hold off on the teeth pulling and set up an appointment with a neurologist, one that is a specialists in cluster headaches. i would hate to see him go through something that won't change a thing. also, i had a few questions. how is his sleeping habits or patterns, with clusters they find that there is damage to the hypothalamus which can cause insomnia, not regular sleep cycles, and daytime sleepiness. it has something to do with the serotonin that the hypothalamus put out( not enough at sometimes, and to much at others) regulating your body clock. are there some foods that he eats that can trigger one, if your not sure try a food diary. does he deal with stress in a productive way? i say that because a lot of my clusters where triggered by stress, now that my body deals with stress in a different way, my clusters are all but gone. Tension from stress can be a big trigger, so he may have to learn new ways of expressing stress, or relieving the tension.
   So dont give up hope, it sounds like you two are finally on the right road, and its a long one let me tell you. but if i can be cluster free for almost two years(Knock on wood), then he might have the same chance.
   Let me know whats going on with everything, there are doctors i know and a few other suffers that can relay things that work and dont work for them. until next time, here's to a cluster free day.
   Eric Cummins.

I don't get it either Linda I hope someone figures it out soon. BarbaraG

i appreciate that, i didn't even think of the e-mail address. its just the first time I've ever put anything out there of my story, and the first time anyone has ever asked me about seeking help for CH. so i just copied and slapped it on the board. i'm guessing i should have put some kind of header on that, but as you can tell from my post, typing and telling a story isn't my strong suit. i meant no harm to her or HC.com, i just wanted to share the story of my first contact with someone looking for help. edit it as you see fit, but i would like it to be posted for others that might be asked for help someday.