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(Message started by: Mark_D_B on May 27^th, 2004, 3:57pm)

Title: My Story
Post by Mark_D_B on May 27^th, 2004, 3:57pm

My name is Mark and I am 30 years old. I have a 5 year old son and am happily married. My first run in with the "beast" was 19 months ago. I do remember it vividly. I was watching my son play on the floor while my wife was working second shift. I was watching "That 70's Show" and talking on the phone with a buddy of mine. Suddenly it felt like someone stabbed me in the left temple with an ice pick and forgot to pull it out. I hung up on my buddy and slumped out of the chair and onto my knees holding my head like I was shot. I called my wife at work and told her " come home I think I am having a stroke" between squeezing my head and pushing my eye I then called my mother to come take my son, they both arrived quickly, and off we went. I will commend the ER that night because they did rush us through, and shortly in came the nurse with a shot of demerol. Then the DR. came in and said "you have a sinus infection" go see your DR. in the morning. Well, after we got back home it decided it wasnt over and back we went at 3:00am, more demerol and some percocet later and we were home again at 6:00am. We seen my DR. and he said no sinus infection maybe its?and maybe its? and maybe its?...so in the next 2 weeks we seen 5 more DRs and 15 more prescriptions. We had everything from TMJ to Tri-Geminal neuralgia oh shit I could go on and on. It wasnt untill recently that we finally got it down to cluster headaches, and come to think of it that was one of the first diagnoses. We did try all the norms, i.e. imitrex, zomig, inderal and on and on, I did find something that works good enough for me to operate on somewhat of a normal daily routine as mine are more a daily thing than episodic, We do have times of the year when they are worse than others but for the most part it is part of our daily routine. What works for us is inderal and hydrocodone and lots of hot water and hot compresses. What I laugh at most is when you tell someone your head hurts and they say "would you like some tylenol". If you notice I have used the word "WE" because I believe my wife suffers from these as much as I do. I welcome any feed back

Title: Re: My Story
Post by Jeepgun on May 27^th, 2004, 4:01pm

Welcome to the board, Mark. Sorry to hear that you've being kicked in the eye by the beast, but glad to hear that you've found a combination that works for you.

I was talking with the wife of one of my co-workers the other day, who suffers from migraines. I was explaining cluter headaches to her and she insists that she's been diagnosed with cluster migraines. WTF??? There is no such thing. Her mind's made up though, that she knows all there is to know about cluster headaches. >:( From her description of them, it's pretty obvious that she doesn't know shit about them. Oh well... There is no end to the frustration that we put up with, sometimes...

Best Wishes,
-Frank

Title: Re: My Story
Post by Carl_D on May 27^th, 2004, 4:02pm

Mark, welcome to the site. I am a bit puzzled though, as you said that Inderal and Hydrocodone are effective for your headaches. Are you SURE it is clusters? You may want to take the cluster quiz over on the left to find out if it's a match. Pain meds usually don't do much for a cluster, and Inderal is usually ineffective in treating as well. Maybe you are suffering from a different type of HA. There is lots of great information on this site; but do yourself a favor and take that quiz. Also, have you had an MRI or a CT-Scan to rule out any other possibilities?

Peace,
Carl D

Title: Re: My Story
Post by jonny on May 27^th, 2004, 4:09pm

Welcome aboard Mark,

Grab that empty seat in the back of the boat ( A retard just left it empty ;;D ) and start rowing, if you cant find an oar see Cootie and she will set you up with one.

Sorry you have to be here but if you have CH there is no better place than here to get what you need.

BTW....Im King here ;;D

...................................jonny

Title: Re: My Story
Post by Leesa on May 27^th, 2004, 4:11pm

Mark, sorry you found us but welcome home dude. All I can tell ya check out ALL the stuff here on the sight and be a sponge soak it all up man!! Have yoru wife read too!! Some folks here like my better half Dave have both cluster and migraines. Get your self to see a neuro get your CAT scan and your MRI. Check out the OUCH sight for a list of docs whom are "armed and ready for battle with the beast" and know what the f*ck they are dealing with. You may find one close to ya!!
Best of luck!!!
Leesa ;;D

Title: Re: My Story
Post by Ree on May 27^th, 2004, 4:16pm

Hate to disagree with you Carl but Inderal is the first med that worked for Dave and going on 22 years there is no question as to whether he has CH... Funny thing about blood pressure drugs is that they usually dont work for long... maybe this cycle but not the next...

Welcome Mark you have become part of the Cluster World here now... Welcome to the most information you will see on the topic and the best family of people that completely care and take care of each other...

Here we have support for you as well as your wife and family... you can check out all of the buttons on the left and just sit back and chill... Welcome and good luck love to you Ree..............

PS the Hydrocondone will cause rebounds so take care in using it... also it only maks the pain and makes you feel a little high and can be addictive... better to use the ansaids and the triptans and O2 is the best way to go naturally.........

Title: Re: My Story
Post by fubar on May 27^th, 2004, 4:23pm

Jeep,

I've run into a couple of doctors that insisted on calling these things 'cluster migraines'. Yes, I know that makes some of us cringe, since comparing CH to a migraine is like comparing a stubbed toe to an amputated foot.

-Fu

Title: Re: My Story
Post by Carl_D on May 27^th, 2004, 4:28pm

on 05/27/04 at 16:16:44, Ree wrote:

Hate to disagree with you Carl but Inderal is the first med that worked for Dave
PS the Hydrocondone will cause rebounds so take care in using it...

I stand corrected. And yes, Hydrocodone definitely can cause rebounds. That I do know for sure. I didn't know of anybody that Inderal actually worked for. My bad.

Peace,
Carl D

Title: Re: My Story
Post by Jimi on May 27^th, 2004, 4:35pm

Back in the 70's that was pretty common to call Clusters, Cluster Migraines. Many books referred to them by that. And it was also called Horners.

Title: Re: My Story
Post by Jeepgun on May 27^th, 2004, 4:39pm

Well, the reason the term, "cluster migraine" pisses me off so bad, is because my neurologist (who had a cluster headache poster hanging in the exam room!) insisted on calling them "cluster migraines," and then tried to treat me for migraines. (i.e. oral imitrex, depakote, refused to prescribe O2, etc.) Talking to him was about as productive as talking to a wall. >:(

Title: Re: My Story
Post by Jimi on May 27^th, 2004, 4:57pm

You can kinda expect GP's not to be up to date with Clusters, but to have a Neuro still call them by that name and refuse to prescribe 02 is unacceptable.
The last time I went into a cycle, my Gp had moved onand I went to a GP I had never been to before. When he found out that I had had them for 30 years he said that I probably knew more about them than he did. He asked me what I wanted and started writing down the script as I told him. When he finished he started asking me some questions.
I finally told him that if he sees another patient with clusters to just give me a call and I would square him away. He was just a kid but at least he didn't act like he knew everything, and admitted he had heard all about clusters but had never met one. I thought he was gonna ask for my autograph. :)

Title: Re: My Story
Post by Charlie on May 27^th, 2004, 5:30pm

Welcome aboard and you'll find lots of suport and some good ideas for dealing with this horror amongst us.

Inderal worked for me too after a few days. It hasn't for everyone. It was all I had at the time.

Here are two links. One to a technique I used and the other to Simon's letter describing to others that CH has nothing to do with what is thought by others as headache:

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

uk.org/ch/note_colleagues.cfm

Good luck and let us know how you're doing.

Charlie

Title: Re: My Story
Post by Jeepgun on May 27^th, 2004, 10:48pm

Right on, Jimi! That's the way my GP is, too. I visited her and took the medical printout from this site. I had highlighted my personal symptoms and the effective treatments, and she said, "Okay... Okay... I'm willing to work with you on this." I saw her a couple of weeks after my cycle ended, at a gymnastics recital. I caught her eye, pointed at my eye, and then gave the thumbs-up. She gave a smile so big, it lit up the whole gym! :)