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alchemy
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Re: Who is who here to the newcommers
« Reply #175 on: Jul 13th, 2006, 10:12pm »
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Hey Chalen, welcome aboard. This is a great place for info and support. kick your shoes off and hang out awhile your no longer alone
jim
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Re: Who is who here to the newcommers
« Reply #176 on: Jul 18th, 2006, 3:53am »
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Let's see.
My name is William S. (BJ for short - bill jr).  
I'm married to the love of my life, Leah. We've been together almost 10 years and are expecting our first baby in about 12 days (boy).
I was born in Miami, moved all over the country as a kid (Cali, Texas, Georgia, Virginia) and wound up settling just outside of Orlando, FL.
I'm helplessly addicted to politics and Taco Bell number 3 value meals. The latter of the two I could probably kick.
I've suffered episodic CH for about 13 years now. Been hooked on this site since 2000 although I've only recently registered.  
I've been taking from this board for over 6 years now...it's time to TRY and give back
 
Basic medical regimen...Prenisone taper Verapamil Shrooms & 02.
 
more info and pics to come later...it's 3:52am and I'm just to tired to write anymore tonight.
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Re: Who is who here to the newcommers
« Reply #177 on: Jul 18th, 2006, 6:59am »
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    Just found this site. My name is Al and I'm 53 . Been havtng HA's since I was 19. I had from 2 to 6 a week till I was 38 and then went a couple of months between episodes. Now at 53 its every 1 1/2-2 yrs. between. I'm going through an cycle now with only verapamil that was only prescribed 2 yrs. ago. I've been up since 10pm and been between a 3 and 9 twice. Down to a 3 now.
  I want to thank everyone for all the info as I will be seeing the doc and demanding some meds. I didn't think anything would help but live through it.
   Thanks again-AL
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Re: Who is who here to the newcommers
« Reply #178 on: Jul 20th, 2006, 8:52am »
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Hello all!
 
I'm Harry, 33yrs old and living in Delfzijl, the Netherlands... I was diagnosed with episodic CH 3 years ago, and thank god, I've only had 2 major cluster-attacks in those 3 years.
 
Duration of a cluster seems to be 2-3 weeks, with ±4 attacks a day, mostly during the nightly hours. In which I have to deal with The Devil for about 30 minutes...
 
The neuro in the hospital recognised almost instantly the symptoms (which seems to be a miracle!!!) and perscribed Verapamil 180mg.  
 
During my last Cluster, which ended about a week ago, I had 2 Verapamil a day, and took Ibuprofen like candy to ease off the pain... At its peak, I took (very) hot showers.
 
And now, about 3 weeks later, i'm back at work. During the day i've got the ghost with me all the time, and I keep taking the Verapamil... The ghost I can handle, and the Devil appears now only once a night, so I guess the worst is over for now...  Undecided
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« Reply #179 on: Jul 20th, 2006, 12:24pm »
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My name's Jeff. I'm a teacher, writer and artist. I've been a CH for 12 years. Can't really tell you how I felt when I stumbled upon your site (now my site) and read the testimonials. I'm in the middle of a bad series and am emotionally raw. I wept when I read about others like myself who have reached deep inside to keep their hands on the steering wheel at the darkest moments of the deepest pain. I call my CH the Spirit Sword.
 
My first CH hit me while I was walking down the street after work. It was as if some unseen spirit had slipped up behind me and thrust a sword in my right temple. I was sure it was a stroke. I ended up on the ground and somehow made it to the emergency room. I thought for sure I was a goner. Now, 12 years later I just count myself lucky when I'm not in a series. The worst of the headaches puts me in places I never thought I had the strength to survive. All other pain I compare to that pain and its made me able to cope with things I thought could not be survived.
 
I've worked my way through a variety of treatments, all of them familiar to you I'm sure. When in a series I find jacking myself up on strong coffee helps take the edge off and I am currently using O2 (thank God for O2) and Maxalt. The Maxalt works sometimes but leaves me in a babbling brainwash. My wife, who is my best medicine, must suffer through the verbal diarrhea that comes after the CH passes. She also sufferes through her feelings of helplessness when the best of her ministrations do nothing to stop the sword. I'm very lucky.
 
The blessing in all of this misery is that when the CH departs (usually after 45 minutes to three hours and as if the spirit-sword is pulled out by some merciful hand) I find myself feeling euphoric. Even more valuable and delightful is that I have bursts of creativity as if the right side of my brain is supercharged. I'm an artist and writer and after the CH passes I've write poetry and draw and paint images that please me greatly. As a result I've been reading poetry at a local open mic and have gotten some positive responses from poets I already have much respect for. Not sure this would happen if I did not have the CH.  
 
I want to say to all my brothers and sisters in Clusterville, I am so very happy to have found you and I wish you pain free days and nights and the hope that someday we'll find a way to appease the Spirit of the Sword.
 
What doesn't kill you makes you stronger.
 
Jeff
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Re: Who is who here to the newcommers
« Reply #180 on: Jul 20th, 2006, 1:52pm »
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jeff,
1 week earlier and ya couldve nade the milwaukee conventuion,,,,,,,,
 
 
welcome aboard
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Re: Who is who here to the newcommers
« Reply #181 on: Jul 20th, 2006, 7:51pm »
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my name is kevin, 36, clusterhead 4 yrs.  I had surgery la  st year, excellent sucess. fantom itches my only complaint. no more pills or pain. contact Dr. Hurt for semi cure. It worked for me. He is in Houston, Texas. My Godsend!  I pray to all to contact him, he may be able to help get your life back. good luck!
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Re: Who is who here to the newcommers
« Reply #182 on: Jul 20th, 2006, 8:32pm »
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Hello Kevin,
What is the surgery you had? Tell us more please. start a thread lower down on the meds and therapies board and lets hear how you're getting on  Smiley
Helen
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Re: Who is who here to the newcommers
« Reply #183 on: Jul 22nd, 2006, 4:52pm »
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Hi,
 
This is my first post.  
 
I am in the second week of my second episode.  First CH started in fall 2002.  I thought it wasnt coming back.
 
2-3 attacks per day.  5 weeks (1st episode) and I hope this episode is shorter...
 
No medication, I was diagnosed at the very end of my first episode.  But they did give me Maxalt.  Never used it and I had thrown it away after a few years...  Now I feel really stupid.
 
Take care guys, I am going to bed, finally...
 
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Re: Who is who here to the newcommersst of all tha
« Reply #184 on: Jul 29th, 2006, 8:29pm »
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whats up people... marty williams 35 tattooist albuqueruq new mexico/seattle washington, no pix, but check my website first of all thanx for the help, and info, ive been a clusterhead since 1990, episodic, and misdiagnosed by more doctors, more time then i can remember. i hadnt had a cycle since '03 and finally thought these bastards were done....till last sunday when they came roaring back, im in the process of opening a new studio, have been stressed, and breathing paint fumes the last month, and man this cycle is as bad as i can remember. tuesday night just floored me, my girlfriend though i was crazy as i was bashing myself in the eye (im a lefty) with my tv remote as hard as i could, wednesday was no better either, i had googled headaches before in '03 and somehow came up empty. i found this site thursday night, and its been a godsend. nobody really understands wht we go through unless its happening to them. i feel better knowing that i now know whats wrong and im not the only one. thanx for the info, help, and support, especially dani's advice www.71tattoo.com
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Re: Who is who here to the newcommers
« Reply #185 on: Jul 30th, 2006, 5:53pm »
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My name is Larry and I've been a CH since 2004. I'm a 57 year old male in Illinois.  I have epilepsy and sleep apnea...not that those are related.  I've only had one seizure in 1981 and been on dilantin ever since.  I use a CPAP for apnea.  The neurologist diagnosed me as CH almost immediately and put me on 10 lpm 100% Oxygen(thank goodness)  and found almost immediate relief.  In my first episodes I had tanks of O2 (2004).  Then I got an oxygen concentrator which filters out the gases out of the air except oxygen.  This way I can use it anytime I need it when I'm home...although I cant take it with me.  I'm going to the neurologist on Friday to see if there are any meds I can take with me to work and out away from the house.  I searched the site and found some I might ask the MD. about.  The episodes have been getting worse each year...that is more intensity and more headaches per day.  
 
Thanks...Larry
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Re: Who is who here to the newcommers
« Reply #186 on: Jul 30th, 2006, 11:12pm »
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Today is the worst day ever...I had 8 episodes.  With the O2 it doesn't get past 10-15 minutes.  How will I go to work???
 
Larry
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Re: Who is who here to the newcommers
« Reply #187 on: Jul 31st, 2006, 4:25pm »
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Hi my name is Jan and I stay on a tiny island in the North of Scotland. I've chronic CH with little or no respite for 6 months. I've had Trigeminal Neuralgia for 8 years and thought that no pain could be as bad!!! Well wasn't I in for a nice surprise!  
I had to laugh when I read a posting that related being afraid to sleep with the Freddie Kruger movies- yeah well I'm well an truly caught in a nightmare.  Grin My kids say that my only redeeming quality in the past few months has been my sense of humour- they used to laugh an say I was insane- well now I;d probably get a certificate. laugh Thanks to all who have posted their stories- its so nice to know that there are others who know that an Asprin be about as much use as a hole in the head- if you pardon the pun! Hope to hear from some of you soon
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Re: Who is who here to the newcommers
« Reply #188 on: Aug 2nd, 2006, 5:18pm »
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Hi I'm Paul 38 yrs old, Live in High Wycombe in the UK got 2 kids 18 & 10 yrs.
 
Been having these lovely headaches for the last 6 years, the first 3 of which were absolute hell as all I was given was migraine treatment......not good!
 
The first time I got a CH I dialled 999 for an Ambulance as I really thought I was a gonner!
 
Will never forget the first time I put "cluster Headache" into google & found people experiencing the same as me, relieved.........you will never know.
 
Thanks to this site & the peolple on here i've now educated my GP & finally got on the right treatment so hopefully some pain free time is on its way.
 
In the photo with me is my girlfriend Sarah who has been unbelievable putting up with my condition.
The first date we went on, I had a couple of buds (big mistake) went back to my house & while making coffee I felt that all too familiar feeling start in my head. I somehow had to expalin what was about to happen "by the way I get these sort of headaches" Undecided & this is before I had Imigran jabs.
 
Iv'e proceeded to go straight into a kip10, thrown up & nearly passed out with the pain while she sat quietly in the bedroom for 45 minutes probably wondering what the hell she let herself in for. I certainly don't think she had previously ever had such an interesting 1st date!
 
Anyway 4 years on she's still here so it couldn't have bothered her too much.
 
Again a massive thanks to all the people who have given me advice & info with putting up with this condition.
 
[
« Last Edit: Sep 8th, 2006, 9:35am by prcole18 » IP Logged
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Re: Who is who here to the newcommers
« Reply #189 on: Aug 5th, 2006, 11:28pm »
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Hi,  
 
I'm George.  I'm an episodic clusterhead, a lefty, and have been for forty years.  I used to cycle twice a year, but it's tapered off to once every three years.  
 
I live in Boise, Idaho with my wife, Elizabeth, and our daughter El.  You'll often find me hanging out on the "Getting to Know Ya" board and on the "General" board.  I lurked here when I was in cycle for about six years, but decided after the last one (earlier this year) to hang around for a while and see if I could lend a hand.  I don't sleep much (never have) so I'm often here late.  
 
I'm not an expert in CH, and I'm certainly not a doctor, but there are plenty of knowledgeable people here, and we can certainly get you in touch with the right person.  
 
Best wishes for pain-free times ahead,
 
George
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Debonair.
(Ellen)
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Re: Who is who here to the newcommers
« Reply #190 on: Aug 8th, 2006, 5:29am »
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Hello all
 
I am Neil I am 22 but 23 on 25th of August (now theres a load of numbers.
 
First got CH in winter 2003, after a really bad motorbike accident.
 
I get them all year round, but its wrose in hot weather. Started off with small (baby) ones that were just bad pain. In summer 2004 they got worse and by 2005 I was having wall bashingly bad ones.
 
Over the last few weeks I have actually been thorwing up due to them, doctors have said it is definately CH, was amazed that a doctor was aware of them.
 
I also have a weird groove in my skull, over my pain zone.
 
Showers help, but dont work and with me provention of a good diet and loads of liquid.
 
I have a good team behind me, as most of my family are either in the medical profession or have some very high medical qulifications, so they are all working together to find what works and what doesn't
 
For those interested in what we haven't worked out what doesn't work, drop me a pm and i will share all we have found out
 
Good luck to all
 
Neil
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Re: Who is who here to the newcommers
« Reply #191 on: Aug 8th, 2006, 5:52am »
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Hello Jan and Neil!
Jan it must be difficult for you living on a small island, I know another sufferer on Mull who obviously has similar problems, drop me an IM if you like and I'll put you in touch with each other. Lets see if we can't get you sorted out with some help and support (from all of us!) Have you ever tried O2 by the way?
 
Neil,  
My son is going to be 5 on the 21st and he has CH too. He's due his 3rd cycle anytime now. I hate hearing of anyone as young as you having to put up with this, it makes me more determined than ever to help as much as I can. What meds have you tried so far? Have YOU tried o2? I love the stuff, its the best abortive ever for me. I'm glad to hear you have a good support network behind you.
Why don't you start a thread of your own listing your experiences to date? I'm sure alot of what you have to say would help others and we can put our heads together to help you as well  Smiley
Looking forward to hearing more from you
Helen
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Re: Who is who here to the newcommers
« Reply #192 on: Aug 8th, 2006, 1:21pm »
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Hi Helen
 
Funny thing, my long sufferer girlfirend is called Helen.
 
I haven't tried O2, would really know where to get it from (please advise)
 
I tried Feverfew (which is bleeping swearwords).
 
We have tried anti-depressants (doctors advice) It worked amazingly well, didn't get a single headache, ut cos they work my messing with the chemicals in the brain and mine are balanced, it unbalanced them and actually gave me bad bad depression.
 
am currently taking Gurana extract (which you put in water and it has no taste) it is working ok, in that with warm weather and not an amazing diet I have only had one in 8 days (and I think that was due to the fact I ate breakfast, then had a bag of crisps and a yogurt at lunch and by 7pm was having an attack) more investigation due.
 
I usually find that walking in a cool environment is good, or a warm shower, also frozen pea on the pain zone is great, plus diet control is vital, along with water control.
 
Where should I post my own thread about my diary or experiences?
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Re: Who is who here to the newcommers
« Reply #193 on: Aug 8th, 2006, 5:18pm »
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Hi Neil
Well, your long suffering girlfriend just has to be incredible if she is a "helen" too.. it's obvious!  Wink
To get o2 just go to your doctor and tell him you want to try o2 as an abortive for CH, they have to fill in a HOOF form to send off to whatever O2 supplier does your area and then they call to arrange delivery. It all comes inclusive so you don't need to get a regulator anymore or a mask as they supply them. Personally I think the only mask worth using is a ClusterMasx. It was developed by a cluster sufferer and so is just the best thing you can stick your face in!
Just under this thread are all the others, hit the start new topic button and set your own thread in action - looking forward to it!
Helen
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Re: Who is who here to the newcommers
« Reply #194 on: Aug 9th, 2006, 2:17pm »
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Hello Everyone, my name is Mike from Miami, fl.  I'm 33 yrs old and suffering from migraines the past 3weeks.  I get 2-3 attacks per day and recently finished all my imitrex.  Dr says he does not want to prescribe more because I finished all 9 within a week.  The web site seems great for different tips and treatment.  Looking forward to learning more.
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Re: Who is who here to the newcommers
« Reply #195 on: Aug 10th, 2006, 8:40pm »
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Hi,
I am new here  Grin  well, kinda I posted back in April-May  and I took some time off! I moved from Florida to Pa I am much happier now Tongue  I am happy to be back everyone was so kind to me when I joined.  
 
Crystal
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Re: Who is who here to the newcommers
« Reply #196 on: Aug 10th, 2006, 9:08pm »
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Hi Crystal! Its good to have you back! I've just seen your other thread and answered that, let us know how you are doing okay? Where in PA are you? Do you have doctors etc sorted out yet? If you are near the Jefferson Headache Centre then I can personally recommend two doctors there (not bad for someone on the ither side of the world eh?!)
Don't be a stranger okay?
Helen
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Re: Who is who here to the newcommers
« Reply #197 on: Aug 10th, 2006, 9:51pm »
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Hi Again  Smiley
 
 I am living just outside of Pittsburgh in a small town Sewickley it is very nice my husband grew up here and all of his family still here very nice to be so close to family Smiley I have not set a Dr up yet but I am on the look out and will have one by next week I hope.
 
It seems like this dull pain may be a little stress or just change in weather and Alt.. ?? Long as I do not get back in a cycle I see myself as PF even tho I have a little knock in my head Smiley
 
Crystal
 
I'll keep in touch Smiley
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Re: Who is who here to the newcommers
« Reply #198 on: Aug 14th, 2006, 5:37pm »
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Hey everyone.  
 
I joined this site back in...1999?  It's been so long I can't remember.  Anyway, I was away for a while and re-joined a couple of years ago, but only recently started posting instead of lurking.  I figured it was time to give back to the community that has unknowingly helped me for so long.  I've been an episodic cluster sufferer since 1989.  
 
I am 37 years old, married with three children (a daughter, age 18, and two sons, ages 17 and 9).  My husband is a Major in the Army Reserves (after being active duty for 10 years) and is a pharmaceutial rep when he's not drilling.  Too bad his products are cholesterol medications and not triptans!  He just returned from a two-year deployment to Ft. Jackson, SC in June.  I work for a financial consulting firm for dentists in Charlotte, North Carolina.
 
 
Here's me with my two boys at a baseball game this past July 4.
]
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Re: Who is who here to the newcommers
« Reply #199 on: Aug 21st, 2006, 6:02am »
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Well I've been lurking  curtainaround this site since 2002 and been a member since 2004 but I've never really posted. Since this last episode I've been reading more posts than I care to count and I felt that I should Introduce myself. wave
 
My name is Nick I'm 25 and I've had Episodic CHs since 1998, although I have begun to believe that I've had a few attacks since the age of 8. Anyway Its the same story as many here, I was misdiagnosed for many years untill I found this website, and even then I had to fight my doctor every step of the way in order to get what I needed. If you don't want the lowdown on my medical history skip the next paragraph.  Wink
 
I was in a car accident away from home when I was 18 and lost my glasses. So therefore when my first episode started within the week I naturally thought it was due to lack of corrected vision. After that episode I spent the next four years going through all of the Migraine medications as my clusters got stronger and stronger each cycle. My cycle was two times a year about a month and a half each time in the months of April to June then September to November. The all time low for me during those four years was when I tried to use the nasal imitrex spray to get rid of a kip 8, and ended up with trex trickling down into my mouth and throat. I didn't know projectile vomitting was really possible. hurl So thats when I decided to take matters into my own hands, hence I turned to the internet and found this site. And eventually the Clusterbusters site as well. I went through all the medications here and the ones listed on OUCH as well with the exception of lithium. After getting no results I turned to clusterbusters, had some fungus tea  mellowand now my cycle only seems to be happening once a year july to september. About 3-8 CHs a day. I have had success with imitrex injections but they were to expensive even after using the wonderful technique listed here. O2 was an issue between my doctor and I, he wouldn't prescribe me the high flow tank because I'm a smoker. smokin And he didn't seem to believe me when I said it would stop the headaches in their tracks, I had reports from the internet too. Cry  
 
So for this new and exciting cycle (5 kip 9-10s so far) i'm using Hawiian Baby woodrose seeds as my preventative measure. Which seems to work pretty good for me... at least this time. Red Bulls to stop shadows and abort some CHs. Lastly I wanted to mention an over the counter product that helped in the beginning of my cycle with kip 5s and below... HeadON  laugh(I know it sounds ridiculous). Anyway this stuff is like $8.00 for a chapstick type dispenser that smells kinda like vicks but less intense and feels like a wet spot that someone is blowing on but more intense. Like I said, it worked in the beginning of my cycle but it no longer does, I just wanted to pass on something that might help others.
 
You are all great people to live with these headaches and survive the PAIN!!!!!bomb We could probably power the world if our endurance could be harnessed into energy. May you all have pain free days. Best wishes, keep the support going. There has to be a cure out there right? worried  
 
Peace
Nick aka Soursmoke
IP Logged

Headaches are Lame!
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