Clusterheadaches.com Message Board


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

        New Message Board Archives >> 2003 Posts >> I'm a Newbie- Here's my Story!
        
(Message started by: Darrin_66 on Sep 9^th, 2003, 8:22pm)

Title: I'm a Newbie- Here's my Story!
Post by Darrin_66 on Sep 9^th, 2003, 8:22pm

Hi, I’m a newbie to this site. Unfortunately I haven’t said anything until now. The vampire on my shoulder is on an hour-long coffee break! Just wanted to take this opportunity to share a little bit of my story and say hi to you all!

In 1989 they diagnosed me with sinusitis and performed surgery on my right sinus. After surgery, the doctor told me that I use too much hash! No joke, I’m dead serious. In 1990, they started again and I just suffered with the pain. I went to BC and they just shot me up with morphine every night.

A year later one doctor said that he thought it could be cluster headaches. He gave me lithium which did not work. The headaches went away for four months and returned with more intensity. It seems the older I get, the worse they get. So since I didn’t know the medical field, I put all my trust and faith in what the doctors were telling me. As far as I was concerned, they were the professionals in their field. I didn’t feel that I needed to question their opinions.

In ‘96 I went to an ear, nose and throat specialist and he said that I needed surgery due to scar tissue that was caused from my last surgery. He said to my wife and I that he wouldn’t say it in court, but the reason that I needed surgery was because of my previous surgeries. To get to the point, I’ve had 15 surgeries on my sinuses, which included metal plates being inserted into my skull. After all that, a neurologist told me that I had cluster headaches, not sinus problems! All that hell for nothing!

The doctor that performed the surgeries on me mysteriously closed his practice down and moved out of town right after I asked for my history file. (Right after he bought a house too) Seems a little weird to me!

It’s pretty hard to hold down a job these days. I never realized until recently how the years have slipped by. After all this time, all the drugs, all the endless nights for my entire family, the jobs I lost; I find myself right back to square one! I thought I was working toward getting rid of this nightmare.

Lately, I’m just trying to juggle my life during the precious few moments of sanity I have between attacks.

I’m just so tired and frustrated to the point where I question whether being here is even worth it. What is the sense of putting my wife and son through this every day. It affects how I conduct myself every moment. I think I’ve died and this is hell! I should be dead after all the pills I’ve taken so far. I know I’m sounding negative and whiny but I can’t control the pain and that makes me feel weak. I think the only people that understand me right now are the people here.

Just wanted to put my two cents in and let you know I’m not antisocial.

Darrin

Title: Re: I'm a Newbie- Here's my Story!
Post by suzy617 on Sep 9^th, 2003, 8:45pm

Hi Darrin and welcome to our world. Sorry you have gone thru so much crap to find out you have CH.
Have you tried imitrex injections? Many people here have had great results with that, also 02. What are you taking now?

Suzy

Title: Re: I'm a Newbie- Here's my Story!
Post by Melissa on Sep 9^th, 2003, 8:51pm

Hello Darrin and welcome to ch.com!

A couple questions, have you tried O2 (oxygen) or imitrex for the attacks? How about a preventative like Verapamil? You can find out more about these medication treatments by clicking on this link: http://www.clusterheadaches.org
Once there, click on "Cluster Help", then follow the links.

Again, welcome to the family, am very sorry you have to be here but there is no better place for a cluster sufferer!

~mel

Title: Hi Suzy.
Post by Darrin_66 on Sep 9^th, 2003, 8:58pm

Suzy,

Thanks for your reply. I'm currently on 200mg of Imitrex Pills daily and oxygen. This is my first time on it and it is easing the pressure a tiny bit. I still feel like I'm getting nowhere.

Just waiting impatiently for a miracle cure.

Darrin.

Title: Re: I'm a Newbie- Here's my Story!
Post by Charlie on Sep 9^th, 2003, 9:04pm

Welcome aboard and sadly your story isn't unique. You are right. We know exactly what this is and what it can do. I had no bad diagnostic experiences though because I'm an epileptic and my neurologists knew everything there is to know about me. Epileptics normally have good rapport with their specialists and it makes all the difference. I only wish CH was as well treated.

I hope you stick around. You'll find some good ideas about handling this horror.

Here are two links: One for a technique I found effective and a second link to a description of this disease which does a wonderful job explaining to employers and others that this has nothing to with what is thought of as a “headache.”

http://www.netsync.net/users/charlies/

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

Charlie

Title: Re: I'm a Newbie- Here's my Story!
Post by 5-string on Sep 9^th, 2003, 9:39pm

Welcome darren_66, sorry your head hurts.
Imetrex, o2, Verapamil seems to be helping me.
see ya,
mark.

Title: Re: I'm a Newbie- Here's my Story!
Post by Headacheboy on Sep 9^th, 2003, 9:41pm

Sorry to hear it. Tried prednisone? 20mg a day kept my beast away. Ask your Doc. for a Medrol pack and give it a shot. Stay on it only long enough to find a preventitive. Also ask about Frova, it's suppose to last longer than Imitrex.
Headacheboy

Title: Re: I'm a Newbie- Here's my Story!
Post by forgetfulnot on Sep 9^th, 2003, 9:57pm

Well said Darrin, very good example of the crap we have to live through. Start rowing and we will win this deal.

Lee

Title: Re: I'm a Newbie- Here's my Story!
Post by Lone_Wolf_FLA on Sep 9^th, 2003, 10:31pm

Darrin,

It took me eight loooong years to find the diagnosis, so I can relate. I was fortunate enough not to have run into a "surgeon" before I found a Doctor. In those eight years the beast came back every year meaner, madder, and stonger. My cycles got longer, my head hurt worse every time, and I had no freakin' idea what was wrong with me!! Worse yet, I had no meds, just the pain for those first eight years!! Yeah I can relate, it's tough during those times!

I had a wife (still got her too!), and a daughter too. (got her and a son now, both nearly grown).

What you "put them through"?!
C'mon Darrin!! stay with me!!! Your Wife and son hurt because you hurt, they hurt even more because they can't help, and they don't understand the beast. That's what you "put them through"! This is because they love and care about you. There is no alternitive to this.

I've been alone with the beast for 26 years Darrin, "he" and I have had some real soul searching moments in some real dark and forgoten corners of my past life. I seen some real bad times, in those first eight years. I've seen some real bad times in the 18 that have followed.

My Daughter is nearly 20, is a beautiful, sweet, caring person, my son is now 17, and a fine young man. They both have good prospects for a good and successful life ahead. My Wife, God love her, has always been there.

I look at those kids, and I think; "Look what we did, "Mrs. Wolf" and I" and you know, suddenlly it's ALL been worth it.

Title: Re: I'm a Newbie- Here's my Story!
Post by Cooked Brain on Sep 10^th, 2003, 12:48am

welcome aboard darrin!

Title: Re: I'm a Newbie- Here's my Story!
Post by UnsolvedEquation on Sep 10^th, 2003, 12:52am

I've seen some pretty good advice: Verapamil and O². If the Imitrex pills aren't doing much, try the injections. It's a whole different experience. The pills won't do JACK for me ( not even 4 at a time, crushed and snorted ...lol ) but the injections work EVERYTIME !

Title: Re: I'm a Newbie- Here's my Story!
Post by OneEyeBlind on Sep 10^th, 2003, 4:52am

The Imitrex injections are a Godsend !!!! They work wonders for me. O2 helps if I can catch the headache right away. Read around, there are lots of people who have tried some of the strangest things !!!!!!!!! You'll find the combo platter that works for you ........ just keep reading and trying new stuff !!!!! Good luck and keep the faith !