Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> Oct-Dec 2003 >> Greetings from Idaho
        
(Message started by: mrbonecrusher on Nov 17^th, 2003, 5:05pm)

Title: Greetings from Idaho
Post by mrbonecrusher on Nov 17^th, 2003, 5:05pm

Hello, I'm late in this but thought I'd introduce myself. I'm Mike, my wife and daughter and I have lived in SE Idaho since 96, still officially work at the womens prison although I haven't been in to work since 1-15-03. I got my first CH last year 11-12-02 @1:30 pm MT. Never really goes away and nothing seems to help for more than 10-14 days. Went to the Diamond Headache in Chicago in june, no lasting relief. While I was gone the dr I was seeing here left the area. Really crappy situation, got in to see a neurologist here in sept who told me "nobody has ever died from pain". No help there, LMAO. Finally got in to see a different dr in oct, she had some good ideas but my insurance provider won't allow pain management that she does. So now the dr and staff treat me like I'm slime and give me the run around. Can't even get an appointment to see the dr to get a referral to another clinic that my insurance will cover. Very bad day today with all of this coming down on me. Probably the worst day in 6 months. I find myself think a lot about suicide again. I may need to increase the antidepressants. People around me seem to have alot of the attitude about pain not being that bad. I'd sure like to share a little bit of it with the jerks. I take 120 of Avinza and a combo of Effexor(sp) and Doxipin. Almost keeps the pain down and the depression at bay. Trying very hard to not give in and go berserk or suicide. Jeez what away to introduce yourself, "Hi I'm Mike now stand back while I blow off the top of my head". Well I'll leave off that for now and say I'm glad to have found a site that has info like this. Thanks for the bandwidth.

Title: Re: Greetings from Idaho
Post by Little Deb on Nov 17^th, 2003, 5:15pm

Welcome Mike. I am so sorry that you're so down right now. It is easy to feel that way. But you have found a place that hopefully you will feel at home in. We are here for you, and we understand the pain. We are here to help each other. Don't give up. I am sure your family needs you.
I work at a maximum security prison here in NC. I got hit with my cycle shortly after I started there last year. I was accused of sleeping on the job one time when I got hit and was in the prison ER hiding for 2 hours. If you are not a clusterhead, it is hard to imagine. Just know we are here for you.
Email or IM or chat anytime.
Little Deb

Title: Re: Greetings from Idaho
Post by cathy on Nov 17^th, 2003, 5:18pm

Mike....hey don't blow your head off just yet, we only just got to meet you!! At least let me welcome you to clusterville...these guys/gals know and share your pain...they truely understand what your going through and are here to hold you up...Hang in there...

PF vibes to you...didn't see you mention O2...a lot of the folks here seem to use that with success...

Cathy

Title: Re: Greetings from Idaho
Post by mrbonecrusher on Nov 17^th, 2003, 5:22pm

Got the O2 right here. Allong with inlaws from WY for the week. Thanks for the PF wishes it going to be needed.

Title: Re: Greetings from Idaho
Post by thomas on Nov 17^th, 2003, 5:25pm

Sounds like you need a good abortive, have you tried trex, zomig, amerge or axert? Pain free wishes headed your way.

Title: Re: Greetings from Idaho
Post by Little Deb on Nov 17^th, 2003, 5:27pm

Mike, please note that there is a supporters corner your wife might want to check out.
ld

Title: Re: Greetings from Idaho
Post by ClusterChuck on Nov 17^th, 2003, 6:19pm

Hi, Mike! Sorry you have to be here. Welcome aboard!

Sounds like you are in a shitty situation, that most of us have been in at one time or another. As far as your treatment, many of us have found that we have to do the research, and then bring our information to the doctor, and teach them.

Hopefully you can get with a doctor that will listen, if not, find another.

Good luck, and keep us posted!

PF vibes heading at you

Chuck

Title: Re: Greetings from Idaho
Post by pubgirl on Nov 17^th, 2003, 6:27pm

Hello Mike

Lots of people here have been where you are now, they DO understand, so talk, shout, scream whatever is your preferred and people will pile in with good treatment advice, new ideas, and most of all empathy.

There is almost always someone here as we are all on different time zones

Sending you prayers across the miles

Wendy

Title: Re: Greetings from Idaho
Post by Prense on Nov 17^th, 2003, 6:27pm

Greetings Mike!

I tend to avoid conversations about HAs or CH in general with people that do not suffer from CH. It's just a dead end road that leaves me frustrated. Other than that, sounds like you just hit your one year anniversary for being a chronic sufferer of this crap. I've been suffering chronically for the last 10 years. One thing the folks here taught me quick was to be proactive and demanding with your docs. Sometimes the best treatment is not at the best hospital, clinic or whatever. Hang in there, there are many people here doing it everyday! Learn all you can here, then find a doc (doesn't have to be a neuro or specialist) that you think might have some potential and teach him/her how to treat CH. There is no one that can give you a revelation in how to deal with CH at this time. All you need is a doc who is sympathetic, willing to listen and willing to work with you. That's really what it boils down to for many of us.

Stay on top!

Chris

Title: Re: Greetings from Idaho
Post by mrbonecrusher on Nov 17^th, 2003, 6:54pm

Thanks for all the positive/helpful posts. I've had a crap day but it seems better when you know there are people out there that have the same/worse problems. The o2 helps some and being in a cool dim place has good. Thanks for the thoughts.

Title: Re: Greetings from Idaho
Post by BarbaraD on Nov 17^th, 2003, 7:39pm

Welcome to Clusterville.

I'll add my 2 cents worth here. I agree - LEARN all you can about CH and then TRAIN a doctor to treat you.

I went through several years of "this neuro" and "that specialist" and finally got fed up. I got my info together and went to my Family doc, sat him down and told him WE were going to treat me... He was shocked at first, but laughed and said, "ok" and that's what we've been doing ever since. We did bring in a neuro (after "interviewing him") a few years ago and he's been great. But the three of us work together and try to keep me under control. I do the research and they "listen" to what I have to say. My neuro keeps up on the latest in headaches and we discuss new treatments when they are available.

I've been chronic since 1997 and know what you mean about wanting to give up. Been there too many times... But go ahead and talk about it - just don't do it. We've lost too many and don't need another statistic. We're all going through the pain and DO understand where you're coming from.

Yell, scream, bitch, whatever - we're here and most of us ain't going nowhere till we find a cure.

Go to the left and read up on everything that we've been collecting for years and then FIND A DOCTOR who will listen to you.....

Welcome to the Family,

Hugs BD

Title: Re: Greetings from Idaho
Post by stevegeebe on Nov 17^th, 2003, 8:40pm

Wife and Daughter are good to have and share your life with.

Idaho sounds nice.

Welcome to Clusterville Mike. Sorry about the extra rough time. You've won before. This place helps you win.

Hang around.

Steve G

Title: Re: Greetings from Idaho
Post by Mikey on Nov 17^th, 2003, 10:44pm

Welcome to the family Mike!!......I was right where you are now just a few months ago. I've been chronic sence 98', and when i get to the position that i can't handle it alone anymore, i come here first and then i think of my family, and then i go to my Doc and tell him we have to do something more right now. He usually will put me in the hospital and give me prednisone I.V. for about a week then send me home on a six week taper. That usually gives me a break long enough to pull me from the deep depression that we've all been in before. So just remember that you are among the most understanding people in the world right here in Clusterville! We will do everything we can to help you at anytime. You might want to ask yer Doc about the prednisone if you haven't tried it already, it helps many here.

Stay strong!!

Mikey, ;;D

Title: Re: Greetings from Idaho
Post by Charlie on Nov 17^th, 2003, 11:58pm

We know where you're coming from and how hard it is to make others understand this has nothing to do with what people think of as headache.

Here is a nifty link that should help you explain this horror. It's made for copying.

http://www.ouch-uk.org/ch/note_colleagues.cfm

Stick around. You'll find some good ideas here.

Charlie

Title: Re: Greetings from Idaho
Post by TxBasslady on Nov 18^th, 2003, 12:07am

:)
Hi Mike,
Welcome to the board.

I can't really add much more then has already been posted.

The prednisone taper worked for me. It stopped my cycle dead in its tracks. That was 69 days ago. If you haven't already tried it, you might give it a try.

Hope you find what you need to get some relief.

Sending lotz of pf vibes your way.... 8)

Jean

Title: Re: Greetings from Idaho
Post by ClusterChuck on Nov 18^th, 2003, 12:27am

on 11/18/03 at 00:07:29, TxBasslady wrote:

:)
was 69

Ah, Jean!!! My FAVORITE number!!!

Chuck

Title: Re: Greetings from Idaho
Post by ClusterChuck on Nov 18^th, 2003, 12:29am

Oh, wait, Jean ... You were talking PF days!!! Sorry !!!

heehee

Great news Jean, keep it up! Love hearing successs!!!

Chuck

Title: mr potater head
Post by rumplestiltskin on Nov 18^th, 2003, 12:44am

nothing works fer everybody
something works for everybody

few people come here on a winning streak.

You have before you enough information...surely more easy to understand information about CH than anywhere else you can look. You can start improving now.......if you choose to.

...and if ya like the warm fuzzy crap....welll ...theres a shitload of that here too.

Walk in the Sunshine
den

Title: Re: Greetings from Idaho
Post by 12gagueblast on Nov 18^th, 2003, 1:42am

Good luck MR. Bone. just keep tring new stuff you will find something that will work. or a combo of things that work. i use amerge am going to try frova use O2 magnesium and just got a scrip for lidocaine nose spray that i haven't picked up yet. a note on the lidocane the neuro wrote it for 10% strongest comm. avalible is 4% ( this tells me that the neuro knows it hurts thao 2.5 the strongest commercialy avalible) had to have to script transfered to someone who can custom make it. not whining just agreeing with everyone else this is a hassel, l but you just gotta keep pluggin. new DR's New RX's but you will eventualy find some relief.

Good luck and hope it works out :) :) :) :) :) :)