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Topic: Who is who here to the newcommers (Read 24291 times) |
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DennisM1045
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Re: Who is who here to the newcommers
« Reply #400 on: Oct 31st, 2007, 12:42pm » |
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Hi Fanchesco, welcome back! Your post was fine. We speak broken English here 
PF Wishes to you too.
-Dennis-
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Jonny
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Re: Who is who here to the newcommers
« Reply #401 on: Oct 31st, 2007, 9:05pm » |
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Welcome back, Francesco.....keep posting, you write english better than I do.
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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slacker032
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Re: Who is who here to the newcommers
« Reply #402 on: Nov 3rd, 2007, 7:23am » |
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Hello All,
I found this board a few years ago and posted here and there but never formally introduced myself. My name is Brian and I'm a 30 year old Episodic Clusterhead from Sherman Oaks, CA. I started getting these suckers in my late teens and was diagnosed in 2003.
This board and the ClusterBusters site has been a godsend. I used to have 3 terrible cycles per year that would last 1.5-2 months. Had mixed results with the shrooms but I've had great success with the seeds starting at the end of last year. This has been the most pain free year I've had in years.
I am currently in the midst of a bad cycle that started a little over a week ago but I hope to bust it with a 3rd dose of 65 seeds this Sunday. I recently decided to go back to school for a 2nd career and I plan on applying to medical school in a couple years. I was cruising along this semester until this cycle derailed it a bit but hopefully I can push through it and get back on track.
A couple days ago, I finally got a prescription for O2 and hope to have that up and running within the week. Too bad the Clustermasx processing is down at the moment. Anybody have an extra to sell?
Anyway, hope to meet y'all some day.
PF wishes to everyone.
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| « Last Edit: Nov 3rd, 2007, 7:27am by slacker032 » |
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One good thing about music, when it hits you, you feel no pain. - Bob Marley
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trigeminus
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Re: Who is who here to the newcommers
« Reply #403 on: Nov 3rd, 2007, 11:05pm » |
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Hello to you all
hope you can see the pic....not sure now
I'm RemCo just diagnosed at 34
started virapimil and oxy....finaly some relieve
really thought i was losing it
took a while to find the right Dr
i must have been 7 or 8 when it first started
from then the docters said it was migraine
but i'm sure it was CH.....now i am
just a shame that so much time wasted on treatments with no results
but i hate lookin back and try to look forward
it helps a lot to read about others experience's and i do recoqnize all
with a tear in my right eye wishing you all PFD
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MR_FLOOR
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Re: Who is who here to the newcommers
« Reply #404 on: Nov 15th, 2007, 11:10pm » |
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Hi Trigeminus,
If it's support your looking for you came to the rite place. You will meet many new friends,see you just met one.
You haven't mentioned any medications. What are you taking for prevent? And also for abortive? Do you have a neurologist yet? Let us know,remember the more questions you ask the more answers you get. This site is all about learning about other peoples experiences (the way they handled them mite help one of us)meeting new people,getting helpful advise,and making lots and lots of the worlds coolest friends.So good lock to ya.
To get the best results start a new thread under Cluster Headache Specific and ask away.
Dave
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| « Last Edit: Nov 15th, 2007, 11:12pm by MR_FLOOR » |
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christophercheek
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living with this beast
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Re: Who is who here to the newcommers
« Reply #405 on: Nov 29th, 2007, 3:17pm » |
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Hello to you all.
I've been in this hell for over 16 years now they became chronic about 7 years ago then 2 years ago they went episodic and finnaly 5 months ago they just stoped then 2 weeks ago bam there back. I was diagnosed when I was 16 my dad had them and knew exactly what they were he went through a seres of surjuries for his sinus' and he hasn't had one since. I've tried all the medication no luck but the water thing seemed to help a bit I was shocked and amazed. It's morning time I woke 3 times last night, I'm so very tired but I'm alive thats what counts. I have a 14 year old girl and a 5 month old son and two step daughters 4 and 6. my daughter has become a great coffee maker she's had to put up with this her whole life. She has been a great supporter and so has my new wife she is also wonderfull. I'm 33 years old and I'm sad anyone else has to go through this but it's nice to be understood. I dont know how to place a pic on here or I would. My mother-in-law found this site researching CH because of me. I looked at it and read though alot of it and it brought tears to my eyes.
Chris
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| « Last Edit: Nov 29th, 2007, 3:18pm by christophercheek » |
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DennisM1045
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Re: Who is who here to the newcommers
« Reply #406 on: Dec 6th, 2007, 4:28pm » |
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Welcome Chris! It's about time you found us. There are lots of helpful folks who know first hand what you are going through. It sounds like you have a good support system though and that is worth a lot.
Tell us something about what works for you and what doesn't. That is how good info gets shared around here. Collective experience is the name of the game
I'm a Father too so I know how hard it can be on the family. Sometimes I think it hurts me more to see the pain through their eyes.
You aren't alone, in fact you never were. Welcome home clusterbrother.
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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iamwitu
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Re: Who is who here to the newcommers
« Reply #407 on: Dec 7th, 2007, 4:21am » |
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hi
i just found you website. I'm sitting here at work thinking that my cycle is about to start again. I read your opening page and i could almost feel the pain. I've had CH for about a year ot two now, but i've had migraines since i was a teen. All I know i that one day i woke up from a dead sleep and i thought my brain was going to explode. My wife and i refer to my headaches as the little man living in my head trying to escape through my eye. I'v been in verapamil for a little over a year. I swear there is nothing like being a grown man crying like a newborn baby. All i can say is thankyou guys for for being out there.
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triprover
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Re: Who is who here to the newcommers
« Reply #408 on: Dec 7th, 2007, 12:56pm » |
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Hello,
I'm from south Jersey. I've had them for about 7 years now but was just diagnosed a year ago. I'm fortunate in that mine are episodic. As I've read other posts I have to steal what seems to be the mantra of, "I can't believe how many people get these and sorry for everyone that has to go through this."
It's a wonderful thing that has been done with the site. To be able to correspond with people who understand is amazing. My family and friends try but you know in your heart they truly have no idea.
Thank you to all of those that have posted as I have already learned more from this site then I have in the past 7 years.
Good luck, hang on, and remember that if you got through it yesterday then you can get through it today. At least that's how I get by.
When I figure out how to insert a pic I will.
Brian
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Sandy_C
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Re: Who is who here to the newcommers
« Reply #409 on: Dec 7th, 2007, 2:28pm » |
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Welcome to the zoo both Iamwitu and Tripover (Brian).
You have found the best place in the world to learn about CH, what has worked and what has not worked for hundreds of clusterheads.
Please check all of the buttons to your left and read, read, read. There is a wealth of information from both episodic and chronic sufferers here...probably more knowledge than your own doctors.
We are not doctors, we cannot prescribe, but what we can do is offer suggestions as to what might help, give you a shoulder to vent and cry on, and become a member of your newly extended family, because that's what we are...a family.
Please post again on the newcomers board, cluster specific board, or medications boards, getting to know ya board and tell us a little more about you, what medications you have tried, not tried, what works, does not work. We'll all pitch in and try to help you in any way we can.
Again, welcome to this crazy zoo.
Sandy
edited for spelling
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| « Last Edit: Dec 7th, 2007, 2:31pm by Sandy_C » |
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ttnolan
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Re: Who is who here to the newcommers
« Reply #410 on: Dec 11th, 2007, 1:35am » |
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Been getting nailed for 32 years. New to ch.com but not to clusters. I'm episodic, 2 months on, 4-12 months off. Front line is oxygen, imitrex injections, amerge (naratriptan), and I find opiates and muscle relaxers will keep the shadows just lurking when I need to go "cheap"... I have no insurance... double ouch!!
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DennisM1045
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Re: Who is who here to the newcommers
« Reply #411 on: Dec 11th, 2007, 1:16pm » |
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Hi TT! Welcome to the board. Loads of good info here. If you don't see any new tricks to try maybe you have some to share! That's how this community works
-Dennis-
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christophercheek
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Re: Who is who here to the newcommers
« Reply #412 on: Dec 16th, 2007, 1:06am » |
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on Dec 6th, 2007, 4:28pm, DennisM1045 wrote:Welcome Chris! It's about time you found us. There are lots of helpful folks who know first hand what you are going through. It sounds like you have a good support system though and that is worth a lot.
Tell us something about what works for you and what doesn't. That is how good info gets shared around here. Collective experience is the name of the game
I'm a Father too so I know how hard it can be on the family. Sometimes I think it hurts me more to see the pain through their eyes.
You aren't alone, in fact you never were. Welcome home clusterbrother.
-Dennis-
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Dennis thank you for the warm welcome...
Chris
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barry_sword
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Re: Who is who here to the newcommers
« Reply #413 on: Dec 16th, 2007, 7:28am » |
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Hi Chris, and welcome to your new home. This family is amazing to say the least. Glad to see you are using o2, works for so many here including me.
Barry
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Miz_D
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Re: Who is who here to the newcommers
« Reply #414 on: Dec 17th, 2007, 4:02pm » |
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Hi Everyone,
Found this site in 2000 just after being diagnosed. Have posted a few times, but mostly I just come here and gather info.
Am a chronic clusterhead originally from Vncouver, Canada, now living in Maui. Semi-retired mom to 4, stepmom to 3, grandma to 1.
I love reggae music, tennis, traveling and am learning to play golf...argh!
What keeps me sane is my amazing husband and the support of my family, my 4-legged familiar Buddha, this website, a great sense of humour and a wicked attitude... 
Here's a pic pf me hamming it up in front of Lulu, my car and another of Buddha at the beach getting his swim on
PFDAN to us all!
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My disabling chronic illness is more real than your imaginary medical expertise...
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Shoot_Me
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Re: Who is who here to the newcommers
« Reply #415 on: Dec 18th, 2007, 12:47am » |
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My headaches are episodic. Thank God there is some relief. I'm in a cycle now and have some ways of controlling this BEAST!
At the first sign (jaw pain) I immediately down a few cups of coffee (w/caffeine) and at times the BEAST does not make its way up to the top of my head. Unfortunately this does not always work. Also, I drink lots of water (hot) daily. This also helps in other ways. I am very healthy (no meds) and physically very fit.
The first headache appeared about 7 years ago but I had no idea what was happening. All I wanted was a gun!
I never mentioned any of this to a doctor but after some research (and finding out exactly what this insanity was called) I've decided to seek help.
The info on this site is great.
Thanks
;)
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hdrider
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Re: Who is who here to the newcommers
« Reply #416 on: Dec 18th, 2007, 11:19am » |
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Hello all! 1st off, let me extend a heartfelt (and headfelt) "thank you" to each and everyone of you that have posted here. The information here has been a Godsend for me and my wife.
Also, thanks to my loving wife who found this website (you know us bullheaded males) and MADE me read it 
I'll try to keep this as short and informational as possible. I'm 54, happily married with 2 great kids, one grandson and another grandchild on the way We live about an hour north of Milwaukee, Wisconsin.
I'm eposodic. At least I think I am. This cycle has me very worried. The beast has been visiting me for about 8 years now. I was diagnosed about 5 years ago. My hits start in early to mid October. Typically, once we get several killing frosts, about the 1st week in November, my cycle ends. This current cyle began in mid October and continues to this day 
Up until I found this site, I downed Ibuprofen hoping for relief. Sometimes it came, sometimes I danced for frickin' hours at a time. Lol, and yes, my language gets VERY colorful to say the least. I now use energy drinks (Red Bull, Rip It, etc.) and 4 Way nasal spray as abortives and I take 10mg of Melatonin daily as a preventative. My hits are now lasting anywhere between 5 mintues and an hour. In looking at all the other alternatives everyone else is using, I consider myself to be very, very lucky. If I have to resort to using prescription drugs and O2 I will definitely do that.
A couple of weeks ago, I was so exhausted from several weeks of continuous hits, I more or less collapsed on our livingroom couch and didn't wake up untill the next day. Keeping my fingers crossed, but since I've started taking the 10mg of Melatonin, I've had 5 days of PF nights
If I or the wife can be of any help to anyone, please let us know. It's the least we can for our fellow CH'ers.
I'd be more than happy to post a picture of the wife and I with our Grandson on our Harely if someone would be willing to help me out. Just IM me and I'll send the picture to you.
Best wishes to you all for many PFNaD's!!
hdrider (Ron)
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Guiseppi
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Re: Who is who here to the newcommers
« Reply #417 on: Dec 18th, 2007, 11:52am » |
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Hey Rider welcome to the board. I hear you about being slow and bull headed. If my wife hadn't found this board I'd still be chewing aspirin for relief!
Please don't be hesitatnt about trying oxygen as an abortive. I have e-tanks all over my house, they are my security blankets. From the time I start to get the tension in my neck and the tingle in my eye, to COMPLETELY pain free can be as short as 6 minutes using only oxygen!!!!!!
So welcome to the board, thank your wife for me for being a supporter, they really are what keeps us sane! Wishing you a short cycle and a LOOOONG remission!
Guiseppi
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hdrider
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Re: Who is who here to the newcommers
« Reply #418 on: Dec 18th, 2007, 8:36pm » |
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Hey, thanks for the warm welcome Guiseppi, I appreciate it!
As is typical for me, after I posted I wanted to add a few things, mostly for the newbies here, so they may not feel so alone or maybe even embarassed.
The beast resides in the left side of my head, face and jaw. Ever since the 1st hit, it seems to end up in a tooth on the upper, left, back side. To this day, because I'm getting non-CH headaces or shadows in this area, I'm bound and determined to have the SOB pulled. When I do, I'll come back and report what happened.
Also, my hits are easily 9's or 10's. They always come about 1 to 2 hours after going to bed. I've since learned, beating my head on the walls or floor, pulling my hair out or crying like a baby doesn't do me any good. So, for now, when the beast visits, it's total isolation from anybody, including my wife, total darkness, no lights and definitely no being around other people.....period! Just me suffering through these damn things and then silently, carefully, crawling back into bed, praying for a few hours of sleep.
During my cyles I have shadows that range from 3's to 7's. I've found a quick slam of 8oz to 16oz of energy drink works wonders. Damn, I would've never figured that out on my own Oh, yeah, we buy the Rip It products at our local Dollar Store, it's 75% less than the Red Bull at our local grocery store and it works just fine
Again, good luck all CH'ers and if I've done my homework properly, special thanks to Annette. Too bad our numbers aren't great enough to warrant some well funded, well researched scientific studies. Let's hang in there, together. Who knows what we can come up with?
Merry Christmas and Happy Holidays to you all!
hdrider (Ron)
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Redd
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Re: Who is who here to the newcommers
« Reply #419 on: Dec 18th, 2007, 10:38pm » |
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Well hey there and welcome Ron. Another Wisconsinite I see. We seem to have more than a fair share of WI representitives round this place. Sorry you gotta be here.
Energy drinks are great. Adlis has a Red Bull Alternative as well that is cheap and works like the pricy stuff too. I always keep a 4 pack in the drawer at work, and 3 times that here at home.
Welcome to the nut house. You gotta have a twisted sence of humor round these parts some times. Look forward to getting to know you and your wife more.
Redd
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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KillerQueen
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Re: Who is who here to the newcommers
« Reply #420 on: Dec 21st, 2007, 5:06pm » |
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I'm sorry, folks, I really am...My cycle ended a few months back, thank God, and I haven't been around since, but I haven't forgotten all of you for your support during the cycle. I feel guilty that I haven't been around to offer support to you guys. My thoughts are with each of you, and to you newcomers, you're in the right place for a fabulous support group!
Here's me and my babies!
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| « Last Edit: Jan 5th, 2008, 7:47pm by KillerQueen » |
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LeLimey
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Re: Who is who here to the newcommers
« Reply #421 on: Dec 22nd, 2007, 7:58am » |
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I was wondering where you'd gone! 
Can't have too many Queen fans around here so welcome back and I hope you stay longer this time.
There are always new idea's etc so you'll be well armed by the time that next cycle comes around - and you'll have fun in the meantime!
love
Helen
PS Happy Christmas!!
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KillerQueen
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Re: Who is who here to the newcommers
« Reply #422 on: Dec 22nd, 2007, 9:55am » |
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Helen, you're so sweet! You have a good holiday, too...I'll be around more. I'm just feeling very blessed to have been pain free for months now. I finally got an appointment with a neuro (three weeks after the cycle ended) but at least he knows I exist, so next time he'll be able to get me right in. I had to wait three weeks to see him (after seeing my GP who had no clue what was going on, and kept prescribing vicodin)...Reading this board made me remember going to see the doc and crying saying over & over how I was afraid to go to sleep at night.
Have a good Christmas, too! I can't believe it's only a few days away...
xoxo,
Jess
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Ten
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Re: Who is who here to the newcommers
« Reply #423 on: Jan 5th, 2008, 3:34pm » |
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Hi im David. Found this place a few days ago. I'ts taken me ten years. I'm episodic and going thru my worst cycle to date.
If I can help in any way shape or form then I will. It would make me smile the hugestest smile to know that I had prevented just one CH. Unfortunately I too am a bit of a luddite and struggle with anything more complicated then a pencil. So for now no pic im afraid. Until one of you kind souls educates me.
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"Once more into the breach dear friends"
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imfareware
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Hello Everyone!!
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Re: Who is who here to the newcommers
« Reply #424 on: Jan 5th, 2008, 10:05pm » |
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Now that I found the hello newbie form, hello everyone, my name is Mike. I've been suffering with these since 1988. They really sux. My family and me have learned to deal with them. Leave me alone, and I'll be back in about 1 to 2 hours. I just started my cycle last week, they are mild so far (my mild would kill the average person if you know what I mean).
During the day I slam some caffine and it helps. Night times scare me. The fear of the midnight onslaught.
Thanks for being there!!
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Pain is temporary, Love is Permanent
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