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Topic: Just wanted to say thanks (Read 387 times) |
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JenLynFin
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Just wanted to say thanks
« on: Jan 13th, 2006, 3:45am » |
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Hi. My name is Jennifer Fincher, and I suffer from cluster headaches. I'm 21 years old, and have suffered from them for as long as I can remember, but was just diagnosed last year.
I just wanted to say thank you for this great website. I began my cycle a few weeks ago, tried medicine that didn't work, and finally decided to do my own research. That's how I found this site.
As I'm sure anyone with ch knows, unless you have them, it is almost impossible to understand the pain. My mother calls them "sinus headaches" and can't understand why 2 Tylenol just won't make them go away. My friends think I'm being antisocial, and since my cycle is always around Christmas, I feel like I am being antisocial when I can't go to a party because it feels like my right eye is being ripped out. Even doctors don't really seem to understand.
When I first came upon this website, I nearly cried. No one else that I know personally has ch, and I was really beginning to think that I was the only one.
I am normally a very happy, social person. I'm very active in church, love my friends and family, and life in general. But the other night, I had an attack...and I contemplated suicide. That scared me more than anything ever has. I haven't been able to tell anyone else about it, mainly because I'm afraid they will think I'm crazy. It's the only time I've ever even thought about doing something so drastic. When I saw "the kip scale" I knew that I had been at level 10. I also knew that I wasn't crazy.
My father just thinks I have a low tolerance for pain, and to be honest, before I read all of these testimonials, I thought I did, too. Now I know this is a truly serious condition.
Once again, thank you so much for putting this information out there, and most of all for making people like me feel so much less alone in the world.
God Bless You,
Jennifer Fincher
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AussieBrian
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Got beer?
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Re: Just wanted to say thanks
« Reply #1 on: Jan 13th, 2006, 4:08am » |
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You're not crazy and you're no longer alone.
Wecome home.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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Barry_T_Coles
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Re: Just wanted to say thanks
« Reply #2 on: Jan 13th, 2006, 4:35am » |
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Hi Jennifer
Ditto to what Brian has said & ask anything you want, here there is no such thing as a stupid question.
Read up on the links to the left, ther's a huge amount of info there.
Kind Regards
Barry
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| « Last Edit: Jan 13th, 2006, 4:36am by Barry_T_Coles » |
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marlinsfan
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Re: Just wanted to say thanks
« Reply #3 on: Jan 13th, 2006, 7:02am » |
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Hi Jennifer, welcome. You found the right place to learn about CH.
on Jan 13th, 2006, 3:45am, JenLynFin wrote:
My friends think I'm being antisocial, and since my cycle is always around Christmas, I feel like I am being antisocial when I can't go to a party because it feels like my right eye is being ripped out. |
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I too got most of my cycles around christmas time, so I too was blamed of being a grinch cause I didn't want to go to any parties, and because I dreaded knowing that christmas was coming. Read my post in the Who here is new thread started by Svenn. You'll see what I wrote about the holidays!
With a little "luck" your cycles will change. I no longer gte them in december. My last one started in April, and the one before that one ended in December.
Read all you can, and ask lots of questions. There are a lot of good people here who are happy to help.
PF wishes.
Jose
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E-Double
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Re: Just wanted to say thanks
« Reply #4 on: Jan 13th, 2006, 8:24am » |
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Hi Jennifer,
No one understands this quite like us and it makes a world of difference to have a good support system.
Many have found what you are about to read (in the hyperlink) to be very useful in explaining to employers, colleagues, friends and family what it is that we go through and that we are not pansies with a low tolerance for pain. If anyone experiences what you go through for even one moment they would know!!! Print this out and pass it around. I guarantee that you will see a change in attitude.
If not then you are surrounded by some cold blooded a$$holes!!
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=knowya;actio n=display;num=1114467535
In addition, Have you tried oxygen to abort?
What meds have you tried or therapies to help?
There is awealth of knowledge here that will bring ya a new perspective and hope.
Pain Free wishes!!!
Eric
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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JenLynFin
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Re: Just wanted to say thanks
« Reply #5 on: Jan 13th, 2006, 11:27am » |
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I just printed out a few copies of the letter to give to my parents, boss, etc. Thanks so much again!
Jennifer
P.S. I haven't tried the oxygen. I have a doctor's appointment tomorrow, though, and will definetly ask about it.
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E-Double
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Re: Just wanted to say thanks
« Reply #6 on: Jan 13th, 2006, 11:43am » |
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don't ask DEMAND!!!!!!!!!!!!!
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Guiseppi
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Re: Just wanted to say thanks
« Reply #7 on: Jan 13th, 2006, 12:41pm » |
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Jennifer our heart goes out to you. I'm like you, a perpetually happy guy, I run a young adult choir at church, no health problems, a pretty social person until the beast hits. I get all the same unwelcome unsolicited advise you get, take 2 tylenol sinus, relax it's just stress, it's just a headache!!!! (wouldn't it be awesome to suffer from just a headache!) The good news is you're home now! No one here will tell you it's all in your head, stop being a wimp or grow up! Everyone here has thought about suicide during a kip 9 and 10. It's okay that it enters your brain, chase it out just as fast as it gets there. Use your faith, and the friends here on the board to get you through it. Good luck with the doctor, get ready to know more then he does though!!! Our thoughts and prayers are with you.
Guiseppi
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FramCire
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Re: Just wanted to say thanks
« Reply #8 on: Jan 14th, 2006, 12:37am » |
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1. Make sure you see a specialist who knows at least a little about CH. Try whatever you can and get all the free samples you can. The medicines are expensive and samples are excellent.
2. When you get your oxygen (A MUST!!!!!!!). Make sure you read the OKYGEN INFO button ont he left and get the right mask. It is CRUCIAL!!!!!!! Follow the instructions too! O2 is my 2nd best friend (besides my wife)
3. Come here and ask anything!!!!! ANYTHING !!!! ANYTHING!!
4. I know exactly how you feel. Just before this cycle hit (only my 2nd cycle so I didn't know it was going to hit) I took over as my churches Upward Basketball Commissioner despite not knowing many people at my church. I figured I would socialize and recruit volunteers. Needless to say, once the cycle hit (within days of me volunteering), this job was impossible. I had to hand over all my duties to the Youth Director because I can't do it. I can't even get to church let alone talk to people. Falling asleep at 3am and waking up with a HA at 7am makes for a tough trip to church.
I haven't read the letter yet, but I printed it out yesterday.
5. Keep your spirits up. It is normal to struggle with CH but try and enjoy life all you can.
Welcome aboard, wish you weren't here (Ok, wish you didn't have to be here is a better way to put it) but glad to have you!
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you. No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
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BC_Battler
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Stay strong
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Re: Just wanted to say thanks
« Reply #9 on: Jan 14th, 2006, 3:27am » |
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Welcome, Jennifer. I'm new here as well and can totally relate to what you were saying about the relief you felt when you realized what cluster headaches were all about and that many others are going through the same thing. I hope your friends and family begin to understand what you are going through and that your experience begins to improve. All the best -
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pattik
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Re: Just wanted to say thanks
« Reply #10 on: Jan 14th, 2006, 7:07pm » |
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Hi Jennifer, I just wanted to wecome you and reiterate what FramCire said about oxygen. Many people find it very effective and not too expensive in relative terms. But it needs to be used with a non-rebreather mask and a high-flow regulator. I hope you find some help here, and keep in touch.
Patti
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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thebbz
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Re: Just wanted to say thanks
« Reply #11 on: Jan 14th, 2006, 11:31pm » |
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Welcome,
That is a cold shot from parents that dont believe the doctors diagnosis and your cries for help.  Did the diagnosis include a visit to a neurologist? That is important. Take your parents with you.  Hope the doctor visit went well.. what did they give you for the CH?
All the best.
jb
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It wasn't me I didn't do it
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mcf69
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Re: Just wanted to say thanks
« Reply #12 on: Jan 15th, 2006, 12:15am » |
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I know you're going to get sick of hearing it Jen, but, OXYGEN, OXYGEN, OXYGEN. It is the safest abortive out there, less side effects than triptans. Don't forget to inquire about preventatives with the doc too, just do your homework and make sure that the meds are going to be right for you. I personally stay away from preventatives because of the side effects, but look at all options. Best of luck to you, if you need anything don't be afraid to give us a shout, we all know what you're going through.
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gobby
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Re: Just wanted to say thanks
« Reply #13 on: Jan 15th, 2006, 1:22am » |
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You're very welcome. Don't be a stranger.......we're all here for you and eachother. 
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Things that don't kill us only make us wish we were dead.
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RichardN
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Re: Just wanted to say thanks
« Reply #14 on: Jan 18th, 2006, 1:17am » |
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Just wanted to add my welcome and ditto what's been said.
You have much reading to do. Investigate melatonin and kudzu (both OTC) and other meds/preventatives . . . which are numerous.
First on the list . . . .OXYGEN! Tis' a miracle for those of us it works for (about 70%) and can help give you your life back.
Hang in there . . . . you've just joined a big family of folks who truly know your pain and who will help you battle the beast.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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