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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 107834 times)

jdboles CH.com Newbie Offline Posts: 4 x0\|Toronto\|Canada\|\|0\|0\|ON,Ontario Gender:	Re: Who is who here to the newcommers Reply #125 - Mar 12^th, 2006 at 4:22pm Hi I'm also in Toronto. Just learned about Cluster headaches. I've been cronic for 7 months, can you recommend any professionals in TO that deal/treat with CH? My neurologist has not been helpfull so far... Thanks ~Josh
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Yournotcrazy

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still standing

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x0|Simi Valley|USA||0|0|CA,California
Gender: male

Re: Who is who here to the newcommers
Reply #126 - Mar 13^th, 2006 at 11:56am

Newbie here,

Although not to CH. 36 yo male. Sufferer since 98. Mine "Were" 24/7 every 4 hours. .01% of the population. I have a few bullet holes, which many years later I found was normal and now a retired, disabled paramedic. "Adam Sandler" SNL. with Chris Farely
"God give me Cancer" The answer is there for us to find it.

Word,

Yournotcrazy!!!!!!

Thank you for writing. I will respond soon. We might be misunderstood, but not alone.&&&&kris

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BigMatt

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Live to ride, ride to
live.

Posts: 1089
Mountain View, CA
Gender: male

Re: Who is who here to the newcommers
Reply #127 - Mar 29^th, 2006 at 1:42pm

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

My name is Matt, This was in Hawaii two years ago and about two months in on my first CH cycle, did not make for a great vacation. I was diagnosed with CH after coming back from Hawaii and it lasted 9 months. It started again this past December and 3.5 months in and still hating the beast. I live in California in the bay area and work for Stanford University as an IT manager in a research center, to bad they don’t research CH. Lol
I found this site just a few weeks ago and it has truly been a life saver and has helped my entire family with understanding the beast. Befoe finding this site we thought the beast was stress related and I was putting blame on my family and they also were blaming themselves. I have a wife and two kids that without there support would make dealing with the beast next to imposable. I thank god for them being in my life and putting up with me and now I thank him for CH.com my second family.
I think that any doctor that diagnoses CH should prescribe CH.com, without it we would all be lost.

There is no stronger a person then one who can deal with brain pain and still function.

http://www.facebook.com/#/home.php?ref=home

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Roxygirl

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I love YaBB 1G - SP1!

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x0|Prairie Village|USA||0|0|KS,Kansas
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Re: Who is who here to the newcommers
Reply #128 - Mar 29^th, 2006 at 3:45pm

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Hi, my name's Ali (Roxygirl). I just found this site about a week ago and I've already gotten tons of helpful information. Thanks! I was PF for about 6 years and unfortunately they found me again. I've been having cluster headaches for about 5 weeks straight now...every day. When I had them the first time around I had them for about 3 months out of the year for 7 years. I'm 28 years old and live in Kansas. I have a great boyfriend who has been very patient with me. Let's hope he continues. And I have two dogs that sit close by my side when I have my attacks. If it weren't for my boyfriend and my dogs I don't know how I'd survive.

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Richr8 CH.com Hall of Famer Offline It's all about today... Posts: 1396 x1\|Tucson\|USA\|usa\|132\|237\|AZ,Arizona Gender:	Welcome Reply #129 - Mar 29^th, 2006 at 4:13pm Nice smile.
Back to top	« Last Edit: Mar 29^th, 2006 at 4:57pm by Richr8 » pf wishes,&&&&Rich &&&&&& ...because yesterday is history and you never know what tomorrow will bring. &&"Med free"- A few seeds and lots of O2-LG but not great.&& IP Logged

marlinsfan CH.com Hall of Famer Offline I love this place! Posts: 901 New Providence, NJ Gender:	Re: Who is who here to the newcommers Reply #130 - Mar 29^th, 2006 at 4:21pm STFU Richr8 Never mind him, Ali. There's one in every crowd.
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Richr8 CH.com Hall of Famer Offline It's all about today... Posts: 1396 x1\|Tucson\|USA\|usa\|132\|237\|AZ,Arizona Gender:	Re: Who is who here to the newcommers Reply #131 - Mar 29^th, 2006 at 4:57pm For clarification, let me rephrase that. Ali, you have a lovely smile. No offense intended. Rich
Back to top	pf wishes,&&&&Rich &&&&&& ...because yesterday is history and you never know what tomorrow will bring. &&"Med free"- A few seeds and lots of O2-LG but not great.&& IP Logged

Roxygirl CH.com Newbie Offline I love YaBB 1G - SP1! Posts: 15 x0\|Prairie Village\|USA\|\|0\|0\|KS,Kansas Gender:	Re: Who is who here to the newcommers Reply #132 - Mar 29^th, 2006 at 5:06pm Thanks. Not as nice as this smiley face though. ;
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Scott S

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Laugh every day and you
have more days to laugh!

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x1|Manahawkin|USA|usa|501|122|NJ,New_Jersey
Gender: male

Re: Who is who here to the newcommers
Reply #133 - Mar 30^th, 2006 at 12:49pm

OK.. so sorry for not having pictures (8x10 color glossy pictures with circles and arrows on the back of each one... old reference that some may/ may not get).

Anyway, I'm new to this board and look forward to utilizing it for information and hopefully not too often to type with one eye tearing and swollen shut, 1 hand on the keyoard and the other on my temple as I while away the hours until I can sleep... I am sure you know what I mean.

I must say, the main page with those couple of testimoinals is an amazing collection of some of my experiences.

Be well ALL...

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medic1852

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This will only hurt for
a little while!

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Kentucky, Owensboro 42303
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Re: Who is who here to the newcommers
Reply #134 - Mar 30^th, 2006 at 1:10pm

Well for those of you who don't know me..My name is Rodger, I am married to a wonderful woman and I refer to her as Amy~Do..I have two kids Shaun and Sierra I call them my HOGS..It is not a reference to their cleanliness or weight...it is a term of endearment from the Marines...Speaking of which I spent 8 years in my BELOVED MARINE CORPS and not ashamed of it....Currently I work as a PARAMEDIC I have done this for the last 15 years...which I love....I also teach and love to poke fun at others...I have been episodic since I was 15 years old and am now 40...I don't take any medicine for it, I did try Verapamill, didn't like the side effect....So I just use pacing and Oxygen..and time...oh and did I mention oxygen and pacing...so if you have any questions drop me a line or pm me...as I get to know you I will give you my phone number...feel free to email me (it is on my profile)..or holler at me on yahoooooo...I use medic 1852 there as well...anyways here is my ugly mug and the rest of my tribe....

Rodger

Me!
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Me and Amy~Do so you dont think I am lying when you see how pretty she is and why the hell she is with me...
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Just the Amy~Do
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

And the HOGS!! Sierra (the girl 7 and Shaun the boy 5)
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

Well nice to meet you all...

Rodger

« Last Edit: Nov 16^th, 2008 at 10:06am by medic1852 »

Shoot Low Sherrif He's Riding a Sheltland Pony!&&Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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BigMatt

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Live to ride, ride to
live.

Posts: 1089
Mountain View, CA
Gender: male

Re: Who is who here to the newcommers
Reply #135 - Mar 31^st, 2006 at 11:12am

Scott
Welcome to the site and sorry you had to find us. I found a great site that lets you post pictures for free and gives you links so you can post them for your profile here. I accualy think someone here pointed me to them so who ever it was thanks.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

There is no stronger a person then one who can deal with brain pain and still function.

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Scott S

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Laugh every day and you
have more days to laugh!

Posts: 7
x1|Manahawkin|USA|usa|501|122|NJ,New_Jersey
Gender: male

Re: Who is who here to the newcommers
Reply #136 - Mar 31^st, 2006 at 8:47pm

Thanks for the welcome. Yes, I suppose it is an unfortunate circumstance to have to find the site, but the silver lining is that there is a site like this.

For now, I remain PF since Nov 2005, but wouldn't surprise me if a cycle was coming up with the change in weather here in the northeast. I keep my fingers crossed to hold it off.

Thanks for the info about the pictures.. I will check it out.

Be well.

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Jonny Ex Member	Re: Who is who here to the newcommers Reply #137 - Mar 31^st, 2006 at 9:09pm If ever I am having a heart attack and you come across me, ....EMT or not Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Let me die!!!!! ;
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zwibbs-Scott CH.com Hall of Famer Offline Stay Strong !!! Posts: 2296 x1\|New Rochelle\|USA\|usa\|501\|104\|NY,New_York Gender:	Re: Who is who here to the newcommers Reply #138 - Apr 1^st, 2006 at 12:48pm The only picture I have is with my daughter, and it is sideways......sorryMultimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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E-Double CH.com Alumnus Offline Are we ourselves? Posts: 6948 Commack,New_York Gender:	Re: Who is who here to the newcommers Reply #139 - Apr 1^st, 2006 at 12:54pm Great to see your face Scott!!!!!!!!
Back to top	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. IP Logged

zwibbs-Scott CH.com Hall of Famer Offline Stay Strong !!! Posts: 2296 x1\|New Rochelle\|USA\|usa\|501\|104\|NY,New_York Gender:	Re: Who is who here to the newcommers Reply #140 - Apr 2^nd, 2006 at 2:14am Yes finally. I just can't stop laughing about Jonny's post to Medic !!!
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Jonny Ex Member	Re: Who is who here to the newcommers Reply #141 - Apr 3^rd, 2006 at 6:52pm Fixed it for ya, Bro Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Edit to add:....Thats one beautiful kid you have there, hope you own a baseball bat or a gun ;
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zwibbs-Scott CH.com Hall of Famer Offline Stay Strong !!! Posts: 2296 x1\|New Rochelle\|USA\|usa\|501\|104\|NY,New_York Gender:	Re: Who is who here to the newcommers Reply #142 - Apr 4^th, 2006 at 12:32am Thanks Jonny----She got her looks from her mother--believe me !
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I Cant Dance

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to the curb!

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x0|Applegate|USA||0|0|OR,Oregon
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Re: Who is who here to the newcommers
Reply #143 - Apr 8^th, 2006 at 2:02am

I'm Dale from Oregon, just joined this board today or yesterday or some recent time between episodes. This is year 5 or 6 for me, and I am dancing with the beast week 5 in this cycle. I am a teacher and have now missed five weeks of class....

I am survived by my wonderful wife and three awesome little scooters. Thanks for this site!

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

"I can endure more pain than anyone you've ever met. That's why I can beat anyone I've ever met."&&-Steve Prefontaine, "Without Limits"----Yeah Right! "I got yer pain right hiya."

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Richr8 CH.com Hall of Famer Offline It's all about today... Posts: 1396 x1\|Tucson\|USA\|usa\|132\|237\|AZ,Arizona Gender:	Welcome Dale! Reply #144 - Apr 10^th, 2006 at 10:25am That's agreat looking crew you've got there. Now jump in and start learning, or just row. We're here for you.
Back to top	pf wishes,&&&&Rich &&&&&& ...because yesterday is history and you never know what tomorrow will bring. &&"Med free"- A few seeds and lots of O2-LG but not great.&& IP Logged

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mardiganseraph

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they're coming to take
me away

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x0|gulfport|USA||0|0|MS,Mississippi
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Re: Who is who here to the newcommers
Reply #145 - Apr 12^th, 2006 at 10:01am

hey yall,
My name is marcus and I am extremely new at this whole clusterhead thing. back in 99 my uncle was diagnosed with clusters. 5 years later I was diagnosed with migraines..... when they went away after about 9 months I thought I was cured. now they are back and more intense than ever before. when i talked to my uncle about what the pain level was like, he said it couldnt be anything other than clusters then he reffered me to this site and told me to pray. I am only 23 years old and have been suffering from these CHs since my 1st tour in the desert. yes i am military. what can i possibly do? the military docs keep changing my prescriptions around and I'm tired of seeking an answer in pain relief. and is this common in people my age? i have no stress and love what i do. HELP!!!!!!

NEWBIE mardiganseraph
AKA Marcus

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Garys_Girl

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Making biscuits

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Planet Cat, NJ
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Re: Who is who here to the newcommers
Reply #146 - Apr 12^th, 2006 at 7:38pm

Marcus,

Clusters can hit at any age, and it is FREQUENTLY misdiagnosed - often for decades, if not years. Now that we've figured out what hubby has, when he thinks back on it, he's realized this goes back to when he was 17. His cycles were short with years inbetween until he hit his early 30s. We're both 43 now, and we're heading into week 7.

Apart from the meds, have you tried 02 yet? It's a very effective abortive for many most of the time. Click on the link on the left. It required specific PROPER equipment. Also check out the Kudzu thread in the Medications section of the board. It's helping hubby quite a bit.

Sorry you had to seek out this site, but there's loads of information available here. Unfortunately there's just nothing that works all the time for everyone. It seems to be a very individual thing - and there's just not enough research being done. No one knows what causes it yet, though it appears to be somehow linked to the hypothalamus.

Wishing you pain free days! And kick around here and ask, ask, ask.

Laurie

« Last Edit: Apr 13^th, 2006 at 12:28pm by Garys_Girl »

This is enough already

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wildhaus CH.com Alumnus Offline Posts: 860 Wildhaus\|Switzerland Gender:	4Re: Who is who here to the newcommers Reply #147 - Apr 22^nd, 2006 at 7:20am Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Just an update..... My „personal support team“ ..... .....I LOVE YOU SO MUCH...........
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zwibbs-Scott CH.com Hall of Famer Offline Stay Strong !!! Posts: 2296 x1\|New Rochelle\|USA\|usa\|501\|104\|NY,New_York Gender:	Re: Who is who here to the newcommers Reply #148 - Apr 22^nd, 2006 at 4:31pm Great looking bunch !!! Very nice wild.
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CH.com Newbie

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It's been about 3 years
now!

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x0|Sedona|USA||0|0|AZ,Arizona
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Re: Who is who here to the newcommers
Reply #149 - Apr 29^th, 2006 at 6:24pm

Hi everybody!

had already thrown in the ocasional post, but never introduced myself:

CH since 1977 (I think, can't really remember anymore). No I'm 47 and I'm just ending an episode!
went un- and misdiagnosed for more than 15 years.

At some point I never wanted to see a doctor again, I had the feeling whenever I started treating - it got worse!

I started with 2 week episodes every 8 - 10 months, the I moved to 4 week episodes every 1.5 years, now I have 6 week episodes and the last two remissions were 2.5 and 3 years.
This was my first episode on O2 - It took about 3 weeks to get all the right equipment (mask, flow regulator) and I'm still not sure about it.

Yes it can abort 95% of my attacks, but during peak time I had to get up every 2 hours, so for a few weeks I had 3 - 6 attacks a day (night). It was never that often before. Also my shadows were more persistent, stronger.

But then again, I don't know if the o2 was the cause, or I was just lucky that I discovered O2 just in time for this episode.
I mean CH keeps on changing on me and a lot of stuff I tried and what helped for 1 episode didn't any longer for the next.

Anyway, this site has been of immense help to me!

Thank You all!

PV

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