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New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> Hello - I'm new - My story - Part 2
(Message started by: krock23 on Jan 31st, 2004, 4:35pm)

Title: Hello - I'm new - My story - Part 2
Post by krock23 on Jan 31st, 2004, 4:35pm
Here's Part 2!

Then in 1997, after 19 years of suffering with this horror, 2 major events happened. I got divorced and I stopped drinking completely. 2 weeks after I stopped drinking the headaches went away. For almost 7 years I never had another one. I was sure that drinking was actually causing them, either that or my ex-wife was. But in either case they went away.

Now here we are in 2004 and I regret to say theyíre back. One day I got one, it lasted about 45 minutes and it was just as horrible as I remembered it to be. I got none for a few days after that but now Iím back to getting them 2 or 3 times a day.

Now you have to remember the time frame Iím talking about here. There was no internet when I first had them for 19 years, and during the 7 years when I didnít have them, I was sure it was alcohol that had caused them so I never tried to do any research on the internet about them. But after a few days of having them in 2004 I decided one morning to do a search on the net to see if I could find some information. I typed into google, ďheadaches only one side of headĒ and voila! The first link was for this site on Cluster Headaches.

I was shocked! There WERE other people who had this. I read through hundreds of posts and there it was. My life. Every story had something I went through (and am going through again). Even the fact that they go away for long periods of time. It was such a relief to me to know that this was real and not something that I was going to have to suffer through alone anymore.

Iíll finish up now by saying that Iím seeing a neurologist who knows what a Cluster Headache is! Iíve had an MRI done just to rule out any vascular problems. I havnít gotten the results yet. In the meantime Iím trying a new medicine she prescribed called Frova. It seems to be helping me a little. Itís not eliminating the CH but it is giving me a day or 2 of relief without them. But in any case, even if I canít eliminate the pain, at least I now know what it is and that there are things that can be done to help.

So in closing I want to say Hello to all of you and I want to thank you for being there. Youíve given me hope I never had.

Ken

Title: Re: Hello - I'm new - My story - Part 2
Post by brad267 on Jan 31st, 2004, 4:44pm
Ken,

An all-too-familiar story....  Read up, and you'll always have the jump on the neuro.  No sense in him wasting your time....

Welcome to the family (of misfits  ;;D)

Brad

Title: Re: Hello - I'm new - My story - Part 2
Post by BlueMeanie on Jan 31st, 2004, 5:12pm
Boy that story sure was a Krock. LOL  [smiley=laugh.gif]

Glad you found the site. As Brad said, read all you can so you can stay well versed on ClusterHeadaches. Print out the pertinent info to take with you to the doc. Especially the O2 info.

Welcome to Clusterville !

Title: Re: Hello - I'm new - My story - Part 2
Post by BobG on Jan 31st, 2004, 5:36pm
Yep. Very familiar story. Told by many here.

Welcome to the board. Stick around, you can be helped and helpful here. Same goes to helpless23.

Title: Re: Hello - I'm new - My story - Part 2
Post by cakelady on Jan 31st, 2004, 7:35pm
Whoa..............
   Almost exactly my story. 45 years old, 7 year break...
substance abuse...

Tell helpless23 how much help she really is.

Christine

Title: Re: Hello - I'm new - My story - Part 2
Post by kissmyglass on Jan 31st, 2004, 8:02pm
yup, my story exactly.   Sorry to say...welcome home...
I'm sure you'll find youself addicted to this board as it's the only place on earth where everyone knows exactly what this unreal pain is all about. You'll also find out that clusterheads are the most amazing bunch of peeps you'll ever meet..

Good Luck,
Kev

Title: Re: Hello - I'm new - My story - Part 2
Post by Callico_Kid on Jan 31st, 2004, 11:07pm
Glad you found us.  This is better than the land of the misfit toys! ;;D  Read as much of the info as you can, print out what you think is pertinant and take it with you to your next visit with your Neuro.  Also, check out OUCH and sign up.  Tell your Neuro about these two sites and suggest she check them out.

Two drugs I would suggest that you discuss withher would be Verapamil and Lithium.  Both have to be built up to a level that will be effective, but have reduced my clusters tremendously.

Jerry

Title: Re: Hello - I'm new - My story - Part 2
Post by TxBasslady on Jan 31st, 2004, 11:41pm
Hi Krock,

Welcome to the board.  

I recall your wife posting here a couple days ago.  She sounds like she is a great supporter.  I am glad to see that you posted.  

Your story and your feelings have been repeated here on this site for a long time.

We all had that feeling of being alone.  Finding this site and seeing that there really are others that suffer like we do has been a Godsend for everyone here.

The support here is phenomenal.  There are lifelong friends to be made here also.  I can testify to both.

I also take Frova.  It didn't stop the pain of CH, but it did shorten the length of the ha's from 1 1/2 hours down to 13 to 18 minutes.  I was put on a Prednisone taper, and it stopped my cycle in its tracks.  That was 142 days ago.  This doesn't work for all, but it worked for me.  That's not to say I won't ever have another CH, but for this 142 days, I have been pf.

Please stay......and continue to post, and let us know how things are going.  And your wife is welcome anytime.  With both of you working on this together, it will make the road alot smoother.

PF vibes,

Jean

Title: Re: Hello - I'm new - My story - Part 2
Post by BarbaraD on Feb 6th, 2004, 6:59am
Welcome to Clusterville. When we say "We know how you feel" we mean it. I've been chronic since 97 so I REALLY know how you feel. 7 years? What a blessing.

Read posts old and new. There's a world of information here.

Again welcome...

Hugs BD

Title: Re: Hello - I'm new - My story - Part 2
Post by Edski_1 on Feb 6th, 2004, 2:41pm
Fukkin "sinus" disgnosis...  [smiley=huh.gif]

Enough to make me scream.  Went through it to Ken.  My cycle appears to be long, on the order of 1 1/2 to 2 years...only went through one about 14 years ago.  But mis diagnosed as "sinus headaches" all I used to combat it was sudafed and ibuprofen...not an effective combination.

Now I have topamax as a preventative and zomig as an abortive.  Topamax has been VERY effective, and I'm handling the side effectes very well, not everybody does.  I haven't needed to use any zomig for about a month now, which has been wonderful.

Hang in there, Ken.  It will get better, you will find a combination of meds that will tame the beast. :)  And there are plenty of people here who DO understand.

PF Vibes! :)

Title: Re: Hello - I'm new - My story - Part 2
Post by thomas on Feb 6th, 2004, 5:26pm

on 01/31/04 at 19:35:29, cakelady wrote:
Tell helpless23 how much help she really is.

Ditto.   What are you using for abortives?  Might I suggest zomig or amerge.  Welcome aboard, isn't good to not feel alone anymore?

Title: Re: Hello - I'm new - My story - Part 2
Post by Charlie on Feb 10th, 2004, 9:19pm
Welcome and Barb is right. Here you are dealing people who know exactly what this is and what it does to your life.  That alone is a great help.

Mine appeared suddenly like yours. I thought of tumor, and strokes. I was already seeing a neuolrogist for epiepsy who was very familiar with this horror. He got it right away and I didn't have to go thought the tests.  This was 35 years ago and they disappeared 13 years ago. So far, I find no particuar reason other than perhaps age.

I hope you stick around and let us know how you're doing.

Charlie

Title: Re: Hello - I'm new - My story - Part 2
Post by ClusterChuck on Feb 10th, 2004, 10:49pm
Sorry you had to find us, but glad you did.

Welcome aboard!

With any luck, you will develope friendships here, and exchange phones numbers with several people here. †Value those numbers! †They can and will be an unbreakable life line for you. †Go to the chat room, get to know us. †Use us, abuse us! †We are here for YOU, just as we hope you will be here for US!

If you see of a chance to meet other clusterheads, GO! †There is nothing like meeting others that KNOW what you are going thru.

Now tell us all your dirty secrets ... Let it all hang out!! We are family!

Chuck

EDIT:  BTW, this ain't no KROCK!!!

Title: hot damn
Post by rumplestiltskin on Feb 12th, 2004, 2:06am
sheeeeit boy...ya been rode hard and put up wet.

I always had a sneaky suspicion alchohol abuse had a hand in my CH. It never triggered them like most Clusterheads so I'd swallow meds with a tumbler of vodka...hell, it said right there on the label alcohol would intensify the effects!...and I sure wanted to intensify their pain killin properties.

Sobered up 2+ years ago for them "other" reasons. Got my worst CH spell ever 4 months ago...well into sobriety. So much for the booze causin them.

welcome home painhead

Research the livin shit outta this and the OUCH site. Nothin works for everybody...somethin works for everybody. Pick yer poison.

walk in the sunshine
den

Title: Re: Hello - I'm new - My story - Part 2
Post by stuey on Feb 24th, 2004, 3:58pm
Ken I'm Stuey and live near you.  I see Dr. Alex Mauskop at the New York Headache Center.  He's at 30 East 76th Street.  Phone no. is 212-794-3550.  He put me on 960 mg of verapamil and 50 mg of elavil and it was the only thing that broke the cycle.  Have you tried the imitrex injections?  It just takes away the pain the fastest, although I've tried the Frovatriptin but it takes longer to start working.  Ask her about the verapamil, prednisone, imitrex, etc. and I'm sorry you gotta be here too.  Anyway, since I've only met one other person with clusterheadaches if you ever wanna meet let me know since I live downtown Brooklyn and work in the City and I'll get together with you if you want.  Stuey



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