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Topic: Who is who here to the newcommers (Read 24368 times) |
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Jay_Mowry
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New to this.. what do I do?
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Re: Who is who here to the newcommers
« Reply #450 on: Apr 5th, 2008, 11:20am » |
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Hi, my name is Jay.
I've been living with clusters for six years now, but was not properly diagnosed until about three years ago. I get them once a year, usually in the summer months. For some reason, my cluster season started early this year, which kind of freaks me out. It's bad enough that it happens at all, but I was a little more comfortable when it was predicatable.
It sucks that no one really understands how debilitating it really is.. people offering me Tylenol and stuff.. it's all kind of insulting in a way, because I feel like they just don't believe it's as bad as I say it is. Like I'm a wuss for complaining about a little headache. Whatever. I can handle a little pain, but a cluster is in a totally category, ya know?
Jay
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Jay
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cronic_head_case
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Someone find a cure asap!
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Re: Who is who here to the newcommers
« Reply #452 on: Apr 13th, 2008, 6:24am » |
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Hi everyone, My name is Dan from London England.
I've had Chronic Cluster headaches for about 13 years. I'm 28 now married with a 3 year old daughter, who might i add is getting really good at being quite and bringing me nasal sprays when i have a headache. Top supporter and real Florence nightingale! lol
I've tried most medications and the ones which work usually give me about a year and a half without pain which is nice.
The worst thing i find about the CH's (besides the pain) is the fact that not many people out side CH.Com, get what it's all about. Most just assume you've got a slight headache and tell you to take an aspirin or something.
So that's me anyway. If anybody wants or needs anything then give me a shout. Even if you just want to speak to someone who gets what your on about.
Just like to big up Dr Peatfield at charing cross for all the good work he's done for all us CH sufferers in the UK. Without him I'd still be undiagnosed and alot worse off.
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Terrell
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Re: Who is who here to the newcommers
« Reply #453 on: Apr 13th, 2008, 4:34pm » |
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Welcome Dan. I am Terrell. I am new here too. This is an awesome website and a blessing for those of us with CH's. You will find lots of support and understanding here. It is nice to come here when so many outside the world of CH's really don't understand what we go through. Again, welcome!
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ccanniff
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Re: Who is who here to the newcommers
« Reply #454 on: Apr 17th, 2008, 12:21pm » |
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Ummm Hi!
I found this website , and I'm thankful for it!
I have had what I've been calling a 'skull cramp' kicking the 'you know what out' of me for the last six years spring time ... now for me it has a name --CH--  .
It scared me because I thought I was dying over and over again. At least sometimes I just wish that I could when the "claw' grips and shakes me.
I never cried befor these episodes, I feel helpless.
before the real pain comes I get pressure , like being in an airplane, or and I feel like I can fight it , but never for long, by trying to adjust the pressure in my ears, by yawning, pinching off my nose, stuff like that. but then OUCH !!!
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warnberh
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Re: Who is who here to the newcommers
« Reply #455 on: Apr 17th, 2008, 2:59pm » |
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Hi there,
My name is Ryan. I'm 25 years old, and I have been "suffering" since around 2001, with my clusters occurring twice a year for about 10 days a piece. I am extremely glad I found this site.
As a writer, I was just putting my experience with Cluster Headaches into words on my blog. In the course of writing, I did some research and found this site. Here is the post I came up with - http://namedropacid.blogspot.com/2008/04/cluster-headaches.html
I assure you I didn't come here to spam my blog, I just thought that my little piece could better illustrate what its like for me personally.
Anyway, good to meet all of you, and I hope to learn more here on this site.
Ryan
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Charlotte
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Re: Who is who here to the newcommers
« Reply #456 on: Apr 17th, 2008, 3:55pm » |
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Welcome aboard, Ccanniff and Ryan.
Charlotte
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jjslugdog
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Dance all night!
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Re: Who is who here to the newcommers
« Reply #457 on: Apr 24th, 2008, 8:17pm » |
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That's me, JoJo, jjslugdog on the board, on the right, with James Rosen of Fox News at the "hippy house" in Crawford, Texas. My bride of 29 years is from Troy, Texas, and I lived in Texas for 33 years. I have 4 children, 3 boys and a girl. I guess I should say 3 men and 1 woman. 3 grandkids. All wonderful. My wife and I moved back to Alabama, where I'm from, in '03 when my youngest son joined the Marines. I began life as a clusterhead around 1979. My dad had 'em, used to watch him shoot morphine when I was a kid. They called them "histamine" HA's back then. I've tried every single thing for 'em that is out there, other than the imitrex stuff. I had my first MI in '93, before it came out, and that kinda put the quitotus on the vasoconstrictors. I have tried "alternative" things, yes, lucy in the sky, didn't work for me. I went chronic in '96, and got hooked on freakin' oxy for 5 years. got up to 200mg a day, chewing 'em up, with up to 10 lortab 10's for break-through. Getting off that stuff just about did me in. Did stop the HA's, though. I would like to hear about the kudzu, though, as there is no shortage around here. I could even can it for winter time. Found the board sometime in the '90's, and it was a life saver. Thought the only other person in the world who had 'em was my dad, and he had passed on by then. Love/hate being here. God Speed to y'all.
ps. the old guy inbetween Rosen and me is Daniel Ellsburg, of watergate fame......
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| « Last Edit: Apr 24th, 2008, 8:18pm by jjslugdog » |
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Timeslowing, forever, exquisite pain is like the Marine Corps. The few, the proud, the brave.
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torro2005
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Re: Who is who here to the newcommers
« Reply #458 on: May 1st, 2008, 6:42pm » |
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Hello everyone,
I'm Gerard from Holland. Just added something here on a topic from Flipflop after registering at your site also like on OUCH in Holland.
Try to deal with CH for about ten years now. Donn't have to explain further I guess.
47 years old. Working (luckely still..) in psychiatry.
For the last 4 months 5 to 8 attacks a day. Getting a kind of desperate but over the years found some tricks besides Imigran-injections and did a lot of research that I like to share with you.
And offcourse learn from you all also in our struggle to beat this torturing monster.
Soon I'll be posting my whereabouts here and hope to get responds.
I wish everyone all the strenght in those torturing, desperate hours wich we cann't explain to anyone but other ch's.
It is called the most painfull experience a human can suffer but it must be also the most lonely one.
For me that's very hard to deal with also.
Thank you for sharing. Try to get some sleep again till the next attack comes.
And I've only got half a Imigran left..Hope it's enough again.
Goodnight and strenght for those who are awake also.
Gerard
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welshchipmonk
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Re: Who is who here to the newcommers
« Reply #459 on: May 3rd, 2008, 6:36pm » |
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Hi I'm Suzie, married to Dave who is the CH Sufferer. We've been married for 21 years and have two brilliant kids - Tasha 20 and Gav 17, plus a house full of cats and dogs!
From all I've read we've been really lucky because he's had these headaches from hell for the last month and was diagnosed with CH last Monday. Mind you he had a brain cyst which was operated on in Charing Cross 21 yrs ago (a month after we were married!) and these current headaches were as bad as then so I've been hounding the poor GP who's just taken over the practice and we've been down to A & E three times as I knew this was not "just a headache".
He's on loads of stuff at the moment which is a problem as he takes a lot of medication for high blood pressure, depression and Menieres Syndrome, mostly as a result of the damage done by the cyst, but we are hoping that the brilliant neurologist who we see again on Tues will explain to our GP that CH's are not just random headaches like migraine - as the GP was loath to give a repeat script for the Sumatriptan yesterday. Having spent the last 3 days reading the threads from this FANTASTIC site, we're going to try and get him to give Dave O2 so there isn't such a conflict in meds and AE's.
Having seen what Dave goes through for only such a short time, my heart goes out to all of you, and I think your battles to cope with this horrible illness and the way you support each other is truly heroic.
Thanks to all of you for the time you've taken to share your experiences, which have helped to make the road of discovery into CH so much easier for us.
Suzie & Dave
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| « Last Edit: May 3rd, 2008, 6:38pm by welshchipmonk » |
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Charlotte
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Re: Who is who here to the newcommers
« Reply #460 on: May 3rd, 2008, 7:33pm » |
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I am sorry you had to find us, but welcome aboard, Suzy and Dave, and Gerard.
Charlotte
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| « Last Edit: May 3rd, 2008, 7:37pm by Charlotte » |
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cbaker
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Re: Who is who here to the newcommers
« Reply #461 on: May 14th, 2008, 8:26am » |
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Hi,
My name is Colin from Manchester, England and have been a CH episodic sufferer (twice a year for 4 weeks)for 19 years. I was diagnosed correctly after initial panic visits to specialists and neurologists and have only been taking beta blockers (Inderal) from the first diagnosis. I have been in remission for 2 yrs until 5 weeks ago (and counting, hoping an end is just around the corner) and only then did I discover the web site. I had hoped they had run their course, but it was not to be. Only now have I seen that there are more treatments available and that there are so many more sufferers with exactly the same symptoms. I don't think the UK has quite caught up with the treatments available yet, as I suspect there is a strong reluctance to prescribe. I'm going to see this cycle out with the beta blockers and if I am unfortunate enough to hit another cycle, I'll be looking at more effective preventative and abortive treatments.
Stay Happy !
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chefjohn
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Re: Who is who here to the newcommers
« Reply #462 on: May 14th, 2008, 8:58am » |
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Dear Colin
Sorry you had to find us but welcome. There are other options out there. You will find that there is a wealth of info out here and there are many people from the UK that are more familiar with your options than I am here in the US. You will hear a lot about Oxygen out here and it is worth looking into. For now just read, read, read everything you can out here and acquire as much knowledge as you can. Because of the nature of CH you will find that many doctors may be lacking in knowledge of this. Yesterday I went to a doctor and it helped me immensely by being well informed. Anyway wishing you many pain free ( PF ) days ahead and feel free to ask for help out here.....your not alone here.
Peace,
John
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judyjudyjudy
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Re: Who is who here to the newcommers
« Reply #463 on: May 14th, 2008, 12:48pm » |
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Hi, I'm Judy from Kansas. I've been CH for 25 years.
It's good and bad to be back on the board....bad because I "need" to be here (in cycle, need support). But good because I'd forgotten how good it feels to listen to another human being who is experiencing the same thing I am! Last night I laughed and cried as I once again had that feeling you all have had.....that
I'm not alone" feeling.
I saw some of the youtube videos mentioned....it was eerie! I was thinking, "Wow....I do THAT!" and it was actually kinda comical. Like, why do we hold rags to our heads? It doesn't help! But we do it anyway! That was the common theme I was in so many videos. And in some sick, twisted way, it made me amused at myself.
It also amazed me how we all learned "the dance" all on our own, without the assistance of a choreographer. Just comes naturally!
Thank you for being here,
Judy
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Transamdoug
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Shout at the devil!
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Re: Who is who here to the newcommers
« Reply #464 on: May 14th, 2008, 11:26pm » |
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Hello all, glad to find you, sorry to be here! My name is Doug and I am just coming to grips with the diagnosis of CH. Been episodic for 3 years but had last year off. Seem to be paying for it this year, in month 3 and going strong, the beast is hungry this year. On prednisone last couple days so I'm ok right now. Just so happy to find this sight, it means so much to give and get support from others just like us. Can't wait to meet you all and I will apologize right now for what I'm sure will be many stupid questions to follow, I plan on being very active here sharing my success and failures with you and asking lots of questions!
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Sharing in pain and success...Doug
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welshchipmonk
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Re: Who is who here to the newcommers
« Reply #465 on: May 15th, 2008, 5:02pm » |
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I don't think the UK has quite caught up with the treatments available yet,
Hi Colin,
we were quite lucky to get a neuro guy who knew about CH, but I was then pointed in the line of www.ouchuk.org and we became members last week, I rang their helpline this week and think Dave might have a "cousin" of CH rather than CH, so we are seeing our GP tomorrow to try and get a referal to Queens Square Hospital in London, which is where the CH specialists seem to be based. You may already know all this but if not give OUCH a look and contact them, they have been fantastic to us.
All the best and I hope your cycle comes to an end soon.
Suzie
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LostAgain
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No excuses...
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Re: Who is who here to the newcommers
« Reply #466 on: May 15th, 2008, 8:53pm » |
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Hi everyone, I've been a CHhead since I was about 16 and I'm 21 now. Got diagnosed when I was 18, my GP is awesome and decided to try and look up the headaches in a medical book. I feel like the youngest person on the boards. Haven't seen anyone younger anyway. Usually had CHs in the fall winter time, but it flipped on me last year when I got them in the summer, and it went away the second football started this last year. Found this site during that time last summer. Been in cycle for about a month and a half now. Can't take Calan (Verapamil) because it kills my endurance when we are trying to get to our in season shape. Been using Imitrex which works perfect but makes me feel lackadaisical afterward. Just started on the O2 and it seems to help during shadows and sometimes afterward.
I love this site and all of you here. It really is all I got for support in cycle.
Avi
P.S. How do I add a pic??
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tonyonly
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Re: Who is who here to the newcommers
« Reply #467 on: May 17th, 2008, 1:36pm » |
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Cheers mates, Tony from Finland. Been living with cluster headache for 15 years now. As it seems to be in many cases it took a long time to get properly diagnosed. Hate to say it but pain cycles tend to get worse every time, with me that is. I think I'm getting a bit desperate and searching out every possible internet forum for help...but this one seems like a gold mine. I was a bit surprised I didn't see a single post mentioning cortisone for medication, it seems to be rather usual at least here in Finland. It has always broken my pain cycle or at least made it very bearable up until this year. I have been eating it a LOT though, in my opinion my body has just got used to it no matter what the doctors say. At the moment I keep telling myself this "it will go away, it will go away" mantra day-to-day.
With these I seem to survive:
(up until this year) cortisone for breaking the cycle
oxygen for attacks
imigran for attacks
verpamil for preventing attacks (I don't really know does this do anything to me but am not willing to any chances and dropping it)
other painkillers & sometimes melatonin for the night
Feels as if I've tried pretty much everything but when it comes it comes and it has it's own schedule when to stop. Working is pretty tough right now, 2-4 attacks per day. Medications mostly prescribed for epilepsy seem to be often prescribed for CH sufferers here, I have only tried one and it had zillions of side effects - might be hard to imagine that with them the condition was even worse than cluster headache but it was.
Keeping my fingers crossed.
So many posted pictures, mine is here
Wishing as pain-free times as possible to everyone 
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sandie99
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Wish it, dream it, do it - inspite the pain!
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Re: Who is who here to the newcommers
« Reply #468 on: May 17th, 2008, 4:52pm » |
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Hi Tony!
Welcome to ch.com!
I'm the resident Finn in here (oh yes, I'm here almost daily) and I'm so glad to see another Finn joining the family; there's few of us in here.
Now, I've lived with the beast a lot shorter time than you have. I've been a chronic and now episodic. I quit using meds after being in remission for 11 months. This is the third cycle I'm using just energy drinks (hits), caffeine tablets(hits), taurine-guarana chewing gum(shadows), ginger ale (shadows) and ice as my ch treatment kit. Works for me!
Sorry that you're in pain, wishing you PF time shortly,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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habanero
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Is it like migraine?
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Re: Who is who here to the newcommers
« Reply #469 on: May 18th, 2008, 12:37pm » |
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hello everyone
my name is mikko and i'm 36 and from finland, europe too.
had CH every once in a while since 1994.
i use sumatriptans and hot sauces to bother the pain.
espresso coffee and smoking helps too occasionally.
at the moment i still got about 4 to 6 weeks left.
then it should be over for now.
m
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sandie99
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Wish it, dream it, do it - inspite the pain!
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Re: Who is who here to the newcommers
« Reply #470 on: May 19th, 2008, 5:40am » |
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Hi Mikko!
Warm welcome to ch.com to you as well!
I'm sorry that you're in pain, but I'm glad it brought you here - this is the best place for information & support for clusterheads.
Wishing you PF time,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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