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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Who is who here to the newcommers

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Who is who here to the newcommers (Read 107531 times)

angela.lambert CH.com Veteran Offline Support Alaska Commercial Fisherman Posts: 182 petersburg,alaska Gender:	Re: Who is who here to the newcommers Reply #500 - Aug 25^th, 2008 at 12:04am Thanks Brew, that is encouraging. Knowing that even with a phone call I can get the proper amount of help. Sorry if I seemed defensive, please forgive me. Angela
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Barry_T_Coles

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Karratha|,West_Australia
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Re: Who is who here to the newcommers
Reply #501 - Aug 25^th, 2008 at 4:35am

angela.lambert wrote on Aug 24^th, 2008 at 11:07pm:

I can't just jump into the car and drive to nearest neuro like most

Hi Angela & Welcome
Like you I know the tyrany of being remote only to well, once diognosed by my local GP it took a 3 month wait & a 2000 km flight to see a Nuro for confirmation but it was worth it, I had the full drill & having the MRI leaves you contented in the fact that there is nothing sinister going on in the noggin.

Cheers
Barry

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Of all the things i've lost in life the thing i miss most is my mind.

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angela.lambert CH.com Veteran Offline Support Alaska Commercial Fisherman Posts: 182 petersburg,alaska Gender:	Re: Who is who here to the newcommers Reply #502 - Aug 25^th, 2008 at 8:22pm Thank you Barry, I am going to make that trip and get a diagnosis. I hope seeing one neurologist is good enough. Hope the first is the right one. Any good leads on a Seattle, WA neuro, please PM me anytime, thanks. So much appreciation for all. angela
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mezza

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I love YaBB 1G - SP1!

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north carolina
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Re: Who is who here to the newcommers
Reply #503 - Aug 25^th, 2008 at 9:28pm

For what its' worth, my GP diagnosed me with clusterheadaches before I saw my first neuro. It wasn't until I saw the second neuro that I got the right meds. GPonly did the prednisone thing and imitrex nasals. Amazing to me that my GP was as astute with CH as he was though and understanding. I credit him with at least getting me on the right track with what was wrong with me. I always have my neuro send the notes to my GP as they are not in the same town . I never know if I'll need him in a pinch for CH and I need him to be in the loop. My neuro is about an hour away. I know my GP reads the notes because I have gone to him in the meantime for a sinus infection and we discussed my treatment.

Like Brew though, my neuro said when my cycle comes back to just call and he'll get everything going before I have to come in.

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River

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Hope for Tomorrow

Posts: 17
Texas
Gender: female

Re: Who is who here to the newcommers
Reply #504 - Sep 22^nd, 2008 at 3:03pm

Sep 22^nd, 2008 at 2:51pm
Well I am new to this site and glad I found it!!! I have suffered from CH for a good 12 years. My GP dx'd me at a young age and I then proceeded to my neuro. I am episodic. I have been lucky enough to be with CH for the past 4 years and this past week they have returned. I discovered I was getting CH at age 18. I am not the typical CH, I am female, I don't drink and I don't smoke, but I feel the pain. For my husband this is the first episode of CH that he is experiencing with me and I know he feels helpless as I cry and writhe in pain. I don't think he understands the amount of severe pain that occurs. These HA have been termed "suicide HA", and after 4 years without one I remember why they are called that.
After falsely assuming I was done with CH, I am now needing to find a new neurologist and get help quick. I begin to cry just thinking that I know tonight will bring another CH. Cry

In the past I tried different meds, and O2 therapy-nothing helped, I was forced to ride the CH out each night. Any and all support is appreciated!! I am just happy to know that I found people that understand what it feels like, and I'm not alone
River

River

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maalstroom

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''Dance to my tune''....
the hell I will!

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the Netherlands
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Re: Who is who here to the newcommers
Reply #505 - Sep 22^nd, 2008 at 3:17pm

Hi River,

Welcome to us bunch of the clusterheaded.

At first, I would advice you to post a topic about yourself and your regimen and whatever you feel like in the Getting to know ya board. Why?
Well, here it might be overseen as many have noticed before. This thread is very much moving all the time.

Doctors have got to rid themselves of the idea that CH is mainly a male thing. It's not. From what I understand there's a 3:1 ratio. It's not that far apart.

As for smoking and drinking being traits of the clusterheaded: I beg to differ. Okay, I smoke and drink occassionally in the weekends, but there are a lot of folks who don't do either.

To make a long story short: there are many misconceptions about CH, even among the all knowing doctors of the world. Most have heard about it, but have no in depth information. Not saying your doc is like this, just that many are completely ignorant. It is not a wellknown affliction, so I can't even blame 'em.

PF days ahead, Pascal.

...AND AS A FINISHING TOUCH, GOD CREATED THE DUTCH.

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DennisM1045

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One wave at a time!

Posts: 3437
Haverhill, Massachusetts, USA
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Re: Who is who here to the newcommers
Reply #506 - Sep 22^nd, 2008 at 3:21pm

River wrote on Sep 22^nd, 2008 at 3:03pm:

Sep 22^nd, 2008 at 2:51pm
In the past I tried different meds, and O2 therapy-nothing helped, I was forced to ride the CH out each night.

Hi River! Welcome... You've found and endless source of help and support here on the board.

I would encourage you to post this in the "Getting to know you" section under it's own thread so we can get the most exposure for your situation.

In the mean time, a lot has change in O2 therapy in the last year or so. 15-25lpm is now recognized as the flow rate it takes to see consistent results.

-Dennis-

Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.

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River CH.com Newbie Offline Hope for Tomorrow Posts: 17 Texas Gender:	Re: Who is who here to the newcommers Reply #507 - Sep 22^nd, 2008 at 4:14pm Thanks, will do!!! River
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Kristen C.

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Posts: 19
Michigan
Gender: female

Re: Who is who here to the newcommers
Reply #508 - Oct 2^nd, 2008 at 4:55pm

Hi everyone! What great bios and stories (sadly)!

The theme here is bios so I will add mine and my husbands. I am a 33 yr. young graphic designer from Michigan. My husband is a 39 yr. young Police Officer (hence the Superman logo) who was diagnosed with CH this past week. He has been in hell for the past 6 weeks with pain. Pain BTW is a very weak word to describe it.

I am glad that we can FINALLY put a name to the face of this wretched situation. I have never seen the pain in my husbands eyes before. We are slowly (but surely) coming to grips with this.

We are new to this whole nightmare, but think we can gain alot from your postings and support!

Thanks to all with BIG hugs!!

Kristen

I have added a pic, but not too sure it came out. If not, my pic is under the Support message board.

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me1.jpg (Attachment deleted)

It's never too late to have a happy childhood..

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Kristen C. CH.com Newbie Offline Posts: 19 Michigan Gender:	Re: Who is who here to the newcommers Reply #509 - Oct 2^nd, 2008 at 4:57pm OMG! Could my pic be any bigger! Sorry...ugghhh
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Jonny Ex Member	Re: Who is who here to the newcommers Reply #510 - Oct 2^nd, 2008 at 6:41pm Kristen C. wrote on Oct 2^nd, 2008 at 4:57pm: OMG! Could my pic be any bigger! Sorry...ugghhh Hell, I made it my screen saver (full screen)
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daniel96

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I can't avoid but to deal
with it smartly.

Posts: 60
x0|Singapore|Singapore||0|0|

Re: Who is who here to the newcommers
Reply #511 - Oct 21^st, 2008 at 10:27pm

Hi I am Daniel from Singapore. Working as a developer and also doing some business. Having cluster headaches for 5 years. I haven't got any serious attack for the past one year. But recently guess the beast missed me, wish to visit me again.. I am ready for the battle!!

Nice to meet you all! Wink

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- my oxygen therapy setup

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thebbz Ex Member	Re: Who is who here to the newcommers Reply #512 - Oct 23^rd, 2008 at 9:07pm I remember you from last episode. Keep on fighting dan. Careful Jonny the womans hubby has a gun, and a headache. Houdy from Montana to all. thebb
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Kushka

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North Carolina
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Re: Who is who here to the newcommers
Reply #513 - Oct 28^th, 2008 at 12:20pm

I'm Carlyn, 35 years old from North Palm Beach, Florida and I am a newbie. I have been dealing with CH since 2000 although I was misdiagnosed with complex migraine until this cycle started about a month ago. Professionally, I am a trainer, facilitator and public speaker. Needless to say, working can be a bit of a challenge when I am in cycle.

I have been married for eight years and we have a delightful seven year old son. They are both wonderful supporters. Finding this site, however, has changed my life in a very short period of time.

The tension that typically builds in my relationship with my husband during a cycle has stopped. He used to tell me I was manifesting headaches to avoid the things I was afriad of and that headaches couldn't possibly last so long. This made me feel judged and unsupported and resulted in problems between us. Now that we know more about CH and have found this site, things are starting to change. My husband now understands more about what I have been going through and knows that it is not just all in my head and an aspirin worn't fix it. He also knows that there are other people out there who know what it is like to feel powerless to ease the suffering of thier loved ones. He is eager try some of the treatments discussed here - it makes him feel like he can actually do something to help.

Since getting the correct diagnosis and finding this site, things have gotten so much better for me. I was dreading the weeks of isolation and the guilt I feel when I can't be the kind of mother, wife, friend or daughter I want to be. I was so afraid of the depression that usually sets in around the fouth week and the suicidal thoughts that ultimately result. I was afraid of dealing with yet another physician who wouldn't listen to me. I was afraid of the feeling of being nearly driven crazy with pain and no relief in sight, having no one who could understand.

Since finding this site, I feel understood and supported for the first time in years. I have not yet found the magic combination that will stop the pain for good but I am learning from all the posts and am tying new things. Finding this site and the wealth of information offered on it by other Clusterheads has given me back a sense of control. I no longer have to suffer through weeks of pain with nothing but useless migraine medication - I can try new treatments until I find what works.

Already, I have seen improvement. As a result of the support offered by other members of this site, I am experiencing fewer headaches and the ones I do have are less severe. I have fired a physician who wasn't listening - something I would not have thought to do before. For the first time in years, I feel like things are going to get better and I am going to be able to get back to my life again. Thank you everyone - you will never know the difference you have made for me and my family!

Carlyn

Carlyn

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Jedi CH.com Newbie Offline I Love CH.com! Posts: 1 Chicago Gender:	Re: Who is who here to the newcommers Reply #514 - Nov 5^th, 2008 at 8:06pm I am new to this. I am 27yrs old and am from Chicago Illinois. Will somebody please help me navigate this site. Promise I am a quick learner...( sometimes )
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Jonny Ex Member	Re: Who is who here to the newcommers Reply #515 - Nov 5^th, 2008 at 8:16pm Jedi wrote on Nov 5^th, 2008 at 8:06pm: I am new to this. I am 27yrs old and am from Chicago Illinois. Will somebody please help me navigate this site. Promise I am a quick learner...( sometimes ) Welcome, Jedi Check your PM's (Top left of this page)
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Scott Lawrence

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Full Time Fighter Since
Nov 5th 2008

Posts: 58
Mitcham, London
Gender: male

Re: Who is who here to the newcommers
Reply #516 - Nov 9^th, 2008 at 9:22am

Hello All....

Damn this feels like the beginning of an AA session......not that I have ever been to one.....but I guess this is what it feels like....so here goes...

My name is Scott......and I am a ClusterHead (Rapturous applause by all)

I am 27, and live in South London, England. I was in full time employment as a Key Accounts Manager for a Electrical company before this bout started, currently I am a beast fighter at night and a very tired person during the day....I hope to get back to work as soon as I get O2, or sooner should the bout come to an end.

I had decided last Monday, after a 3 1/2 hour attack, that should I ever have to go through that again, that I was not willing to continue with my life, sounds quite sad and dramatic, but it's what I felt.
Then something miraculous happened, I found this site.
It has been roughly 6 days since I joined and I am now at a place where I never thought I would be, I understand the illness I have, I understand what things I can do to help, I was pointed in the right direction for medication and feel like I can/will be able to handle this.

You guys are the greatest!!!

I would put a picture on but I don't know how!!!!

“Understanding is the first step to acceptance, and only with acceptance can there be recovery.”
“I enjoy convalescence. It is the part that makes the illness worth while.”

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coleman CH.com Newbie Offline I Love CH.com! Posts: 17 Coeurd' Alene ID USA Gender:	Re: Who is who here to the newcommers Reply #517 - Nov 16^th, 2008 at 6:51pm ggg hi all my name is cole my wife is a cluster head it gets to me alot of times that i just want to get rid of her butt i love her to much.please help me to cope with it better.
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AussieBrian CH.com Hall of Famer Offline CH - It's all in your head! Posts: 3851 Cairns, Qld, Australia Gender:	Re: Who is who here to the newcommers Reply #518 - Nov 16^th, 2008 at 7:04pm coleman wrote on Nov 16^th, 2008 at 6:51pm: ...please help me to cope with it better. Sure Cole, we'll help any we can. Tell us more about what she's tried, give us a hint, because there's a wealth of information here for the pair of you. Only good times ahead, B.
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CH-HELL Ex Member	Re: Who is who here to the newcommers Reply #519 - Nov 16^th, 2008 at 7:24pm Check your PM's Cole. Top of the page Phil
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flipperlips

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Live, Laugh, Love

Posts: 935
Mcallen, TX
Gender: female

Re: Who is who here to the newcommers
Reply #520 - Nov 18^th, 2008 at 8:23pm

Hi Cole

Welcome to the best place on earth for help dealing with CH. I'm a supporter, too. It's tough but hang in there. We are everything to our sufferers and our sufferers are everything to us.

Please tell us somemore about your situation. If you wouldn't mind posting it in supporters corner it will be more visiable there to all.

Hugs,

Jen

Only one life.....only one chance to make the moment count for something - Racer1_NC

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UnderTheRadar

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Literally

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Texas
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Re: Who is who here to the newcommers
Reply #521 - Dec 28^th, 2008 at 8:32pm

Funny, I never have gotten around to this thread!!

I'm Paige, 32, of the female half, mom of a precious 5yr old boy, down in San Marcos, Texas.

I just got diagnosed this summer, right after I moved in with my man and went back to college full time (double major of Communication Design and Studio Art-Printmaking.) I think the beast has bitten me before, but I also get bad migraines, so it's hard to post-diagnose.

I THINK I'm coming out of a 6-month cycle; constant migraine with the hits; and pretty much nothing (even the 02) worked this time around except for my ADHD meds, some very very low-dose and infrequent floricet, and of course clusterbusting (but I tried too far into the cycle. It stopped, but kept coming back.)
Here's me and my boy Ronnie (Ronald) on Halloween 2 years ago (yes, I'm Cyndi Lauper and he's Bob the Builder!)
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Those are tracks in my hair, BTW. Cheesy

and here's a shot of me with my man, Paul, at a party-
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Sorry boys- I'm spoken for! Wink

Remember- double-line the foil, shiny side out.

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I.T.

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zen

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Re: Who is who here to the newcommers
Reply #522 - Jan 5^th, 2009 at 2:04pm

Hi Svenn.
I`m also from Norway, my name is Ingvild, 36 years old. On the 1.of jan 2009, my 15 weeks of CH was finally over this time. (Maybe it was you i talked to on the phone some weeks ago? I was pretty desperate!) I have had the condition for 18 years, but I have never spoken to anyone else who have had it. I hope this site can be a good place to visit. I really need some friends to talk to after all these years trying out things and meds on my own.
Ingvild

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The Mad Viking CH.com Sponsor Offline Always Look on The Bright Side of Life Posts: 3583 Oslo, Norway Gender:	Re: Who is who here to the newcommers Reply #523 - Jan 5^th, 2009 at 3:22pm Check your PM I.T Svenn
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Chris Morrow

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Messin' with Sasquatch

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Asheville, NC
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Re: Who is who here to the newcommers
Reply #524 - Jan 6^th, 2009 at 3:56pm

Hi all, my name is Chris. I am from Asheville, NC. I have 4 kids and one on the way. I've had ch since 1996. I wasn't correctly diagnosed until 2000. For the past 7 years, they have been a Christmas tradition (they usually begin around late November and end sometime in March). I expect to see the man in the red suit every Christmas....the only problem is he is not jolly, and he has horns and a tail.

I'm entering my 13th year of this hell, now, and this year is the worst to date. I'm on my third week, without any break with my low being only 2 in a night. I had so many different treatments, preventitives, and alternative medicines that I can't even name all of them. None have worked....

There are nights that I wish that it would all end. I'm not suicidal, by any means, but I have begged God to end it all for me on more than one occasion.

My problems are: finding a doctor to give me a treatment that works in my area, finding an affordable doctor....I don't have health insurance and I have 4 kids. All I have right now is prayer. James 1:2 tells me to find joy in my suffering, Paul states basically the same thing. I am finding only fear, and do not look forward to my next scurging. I dred what the beast has to offer me tonight, but I know I'll make it and work another 10 hour day tomorrow completely exhausted.

That's my story.

Chris

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