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        New Message Board Archives >> Jul-Sep 2003 >> After 12 years of this!
        
(Message started by: gmlevenhagen on Sep 11^th, 2003, 2:49pm)

Title: After 12 years of this!
Post by gmlevenhagen on Sep 11^th, 2003, 2:49pm

After 12 years of misdiagnoses and treatments that not only did not work but cost me and my family losts of money. I was told to day that I have CH. Water and O2 is what my Dr. is giving me.
I thought it was a joke till I found you web site. My New Dr. told me that true ch are rare and even more rare in woman, and that is why no one has caught it till now. But as I read though this web site my simp. was classic. I have never heard of ch untill today! All though I have yet to start my treatment it feels better already to have a name for them, see that i am not the only one andknow that I am not some kind of phrenetic. Because the pain comes on so quick many people think that I am making these up to just get out of stuff! I have had jobs fire me, Family members not talk to me, I could go on and on. I would like to here how other people have dealt with this!

Title: Re: After 12 years of this!
Post by 5-string on Sep 11^th, 2003, 2:56pm

I'm sorry you're suffering from these things,they suck.
There's a bottomless pit of info here. This is without a doubt is the place to be for cluster headache victoms.
Welcome to the sight, dig in,
Mark..

Title: Re: After 12 years of this!
Post by ave on Sep 11^th, 2003, 3:03pm

GM, you are not the only one, nor the only female, as you'll see when you start reading through the archives.

A very good link is this, to the OUCH-website:

http://www.clusterheadaches.org/

with so much information, it will give you a headache!

You are lucky with a doc who will prescribe Oxygen, but make sure the flow is at least 10 and rather 12 liters and you get a mask, not those nose tubes, they don't work!

Also most docs will prescribe preventive medication - often starting with Verapamil. Check that out as well.
Printing out the scientific info for your doctor is agood ploy.

Hang in there, GM. Us clustergirls may be rare, but we cling together and we are tough as old boots and great survivors.

Title: Re: After 12 years of this!
Post by UnsolvedEquation on Sep 12^th, 2003, 3:28am

Welcome to the clusterboat ... grab an oar !

Title: Re: After 12 years of this!
Post by Charlie on Sep 12^th, 2003, 4:27am

Welcome and you've found place populated by people who know exactly what this horror can do. I hope you look around as you will fnd many good ideas here about dealing with this 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

Keep in touch.

Charlie

Title: Re: After 12 years of this!
Post by OneEyeBlind on Sep 12^th, 2003, 5:33am

Welcome to the board. Read the 'oxygen info' button on the left to make sure you are using your o2 properly !!!!!! Lots of good info here, just start reading and reading and reading !!!!!

Title: Re: After 12 years of this!
Post by ShariRae on Sep 12^th, 2003, 7:17am

Welcome Home! It is indeed a relief when you finally get the right diagnosis. There is a wealth of info here & some mighty fine folks who will always help with questions & suggestions, Just ask! Read all you can here, it will help more than you think.
HUggs
Shari

Title: Re: After 12 years of this!
Post by aprilbee on Sep 12^th, 2003, 7:22am

Welcome, sorry you have gone through this hell for 12 years not knowing what was wrong with you and that it has put a strain on your family and life. I just want to ditto what everyone else has said. Grab the ice pack and the O2 and join the family!! ;)

Title: Re: After 12 years of this!
Post by cathy on Sep 12^th, 2003, 8:36am

Hi and welcome aboard....sorry you had to find us, but hopefully you won't regret it....hope you don't get motion sickness it's a rocky ride at the moment but grab that oar and start rowing!!!

Cathy

Title: Re: After 12 years of this!
Post by kbbogo1 on Sep 12^th, 2003, 9:40am

I thought I was bad - went thru 6 years of misdiagnoses, dr's thinking I was a junkie, and about $16,000 worth of dr visits, meds, therapies, and testing. Sometimes it sucks to be us! I am sure you will find this site to be the best thing that has ever happened to you. I literally started jumping up and down and think I may have even shed a tear when I found this site. I think this place has saved the sanity and possibly even the lives of many here. Welcome!

Kim B

Title: Re: After 12 years of this!
Post by CryingInPain on Sep 12^th, 2003, 9:53am

Welcome Aboard!
Im sorry to hear how much you had to go through to finally put a name to the pain! I was one of the rare lucky ones that was properlly diagnosed rather quickly. I couldnt imagine suffering for years and years and YEARS with no name for the beast!!
You will find this board to be your shoulder to lean on! The people here are wonderful and this board is information overload on CH's
If you ever need a hand reach out and one of us here will gladly meet you in the middle!

~Hugs~
Jen

Title: Re: After 12 years of this!
Post by surfshi on Sep 12^th, 2003, 10:10pm

I was once their,today I'm hear,and their somewere else..I thank GOD...Surf

Title: Re: After 12 years of this!
Post by tsayswhy on Sep 12^th, 2003, 11:08pm

12 years you must of felt so alone :-[ i was misdiagnones for 4 years{called it migraines} until i found this site and went to my gp with the info. Read everything you can and take control and now that you found this site your not alone. o and one thing i have learn from this site if you dont have c/h you dont understand. maybe you can try and copy your post and take it to your family members and let them read all of this. Thats what i did and it really help them to see I AM NOT MAKING THIS UP good luck and keep on posting

pf tari

Title: Re: After 12 years of this!
Post by goaway on Sep 13^th, 2003, 8:12am

Welcome Home!

Your experiences are right on the money as with the rest of us.

Hang in there. Things will get better. Hope to see you often on these pages!

Title: Re: After 12 years of this!
Post by Miss_Deleny on Sep 13^th, 2003, 10:46am

Welcome Gm! Sorry you had to look for us but so glad that you did. I will repeat what others have said before me, read, read, and read some more .. there is SO much information here through the links on the left! Print out as much information as you possibly can to take to your Doc .. the more you know about CH, the better off you are!

~April~

Title: Re: After 12 years of this!
Post by Pinkfloyd on Sep 13^th, 2003, 11:18am

Before you end up being put on a miriad of preventatives and are still just using water and 02, you might want to give this a read ..

www.clusterbusters.com

If it ends up being a consideration, it's much easier done before having to detox.

Fall in Il. is a bad time for clusters, (in most states for that matter) hope you cycle ends in time to enjoy the holidays!

PF

Title: Re: After 12 years of this!
Post by nancyc on Sep 13^th, 2003, 5:33pm

Sis, welcome to the family...i can understand your frustrastion...i went years before being diagnosed too...And had lots of Docs say..but you are a woman and they dont have chs...LMAO...anyway, anytime you need a female with chs to talk to, email me..i would be more than glad to share my experiences with you and hopefully, give you some HOPE...smiles, nancyc

Title: Re: After 12 years of this!
Post by K. on Sep 13^th, 2003, 10:36pm

Sorry you suffer with these. There's lots of us girls on here. I've learned so much from this sight and you will too. You'll learn how to manage the pain and make a lot of friends that know exactly what you are going through.
Hang in there!
K.