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Topic: Who is who here to the newcommers (Read 24334 times) |
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genss
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Re: Who is who here to the newcommers
« Reply #250 on: Dec 28th, 2006, 1:54pm » |
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Hello everyone. I've been coming on here for about 5 years now. I have to admit, I only come on here when I am going through an episode. I'm trying to change that now, though. I've had CH since my late teens. I'm 28 now. I use amiltryptlin (sic) and verapimil. They are the only things that work for me aside from Prednisone. But prednisone tore up my joints, so I don't take it anymore. This site was a lifesaver for me as well. No one understands like ya'll do! And no one is as informative either!
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TonyG1
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Re: Who is who here to the newcommers
« Reply #251 on: Dec 28th, 2006, 5:35pm » |
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Not really a newcomer, found this site during my last cycle in 2004 / 2005 -- Back in cycle again but do visit the site on occasion when I'm not in the jaws of the beast .... I'm 41 and have had CH since around 21 or so... Verap and triptans are my friend (or did I mean fiend... ) 
Wishing everyone PFDANs !!
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jeffr
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Re: Who is who here to the newcommers
« Reply #252 on: Jan 10th, 2007, 5:39pm » |
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hi everyone my name is jeff . im not too computer savy but im learning . i have had clusters since 2001. '06 was my first full year with out pain. doc put me on verapimil 360 mg . 13 months later they're back worse than ever . my gp set me up with a neurologist 24 of this month any help with determining if this doc. is for me what do you look for, guestions i can ask. im sure after some time using this site with all of you communicating like this will be easier. my wife is robinr on supporters side if you see her say hi thanks so much for being here.
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Fr._Joe
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Re: Who is who here to the newcommers
« Reply #253 on: Jan 11th, 2007, 2:06pm » |
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Hi everyone! I am 45 today. Have been having these things since I was 17 or so. Trust me, I don't think you want t see a picture of me. Anyway, I have been lurking here for quite some time, but decided to register today. I am married with three sons BTW. and live in NJ, USA.
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robinr
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Re: Who is who here to the newcommers
« Reply #254 on: Jan 11th, 2007, 4:29pm » |
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Hi everyone. This is robinr, jeffr's wife. I just wanted to say hello since he introduced me in his first message.
It's been hard this last few weeks. Jeff's headaches were GONE until our MD here lowered his dosage, and then BANG, they have come back with fangs. BIG UGLY FANGS.
We're glad we've found this site and hope to get some insight into what questions to ask when Jeff goes to the neurologist later this month.
He's gone from zero headaches for over a year to two or three every night. And I feel so helpless when they come. It's hard to not be able to help someone you love when they are hurting so badly. The helplessness I feel is just overwhelming. Sometimes I just leave the room because I know there is nothing I can do.
Anyway, we do appreciate you being here, and I hope our posts don't get lost in this very long thread. We need your help.
Thanks,
Robin (and Jeff)
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Opus
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Re: Who is who here to the newcommers
« Reply #255 on: Jan 22nd, 2007, 8:36pm » |
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Posting for Lisa AKA swimchica623
Lisa says HI! 
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| « Last Edit: Jan 22nd, 2007, 10:50pm by Opus » |
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Zed-Zed-nine plural-Zed alpha,
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Tara Ann
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Re: Who is who here to the newcommers
« Reply #256 on: Jan 22nd, 2007, 9:01pm » |
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#1 paul thanks for putting a face to the s/n............nice to put a face to the name Lisa.......u sure are a cutie hun!!!!
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http://www.myspace.com/taraann77
 
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Brew
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Re: Who is who here to the newcommers
« Reply #257 on: Jan 23rd, 2007, 4:59pm » |
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I don't know, Lisa - Your eyebrows look pretty symmetrical to me....
on Jan 22nd, 2007, 8:36pm, Opus wrote:Posting for Lisa AKA swimchica623
Lisa says HI! |
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barrybhoy
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Re: Who is who here to the newcommers
« Reply #258 on: Jan 27th, 2007, 3:18am » |
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Y'ello!
My name is Barry; I'm from Edinburgh, in Scotland. Believe it or not, I only discovered today - after ten years - that I have been suffering from CH. What a relief it was to come across this site.
For the past decade my CH has frustrated and upset a lot of people I've lived and/ or had relationships with. Why? Because they, like me, had no idea what was wrong with me. At times, I thought I had some form of brain tumour, and even describing my symptoms to Doctors didn't help. "Take some painkillers," they'd say. "But they don't work," I'd reply back.
Now I feel a little bit better knowing exactly what it is I have and, that, there are other people out there (and hopefully nearby in the UK) willing to share their experiences and advice on combating this debiltating problem.
Over the years, the strength of my CH has forced me out of work, caused many a problem at social occasions, and resulted in whole days of my life gone missing.
Anyway, enough bleating. Hello to everyone on the board!
Cheers,
Barry
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LeLimey
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Re: Who is who here to the newcommers
« Reply #259 on: Jan 27th, 2007, 5:09am » |
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Hello Barry and welcome!
I'm sorry that you have HAD to find us but I'm glad you have.
You might want to have a look at OUCH UK as well as they have alot of sufferer's fairly close by to you. Edinburgh, Perth and Glasgow have a few friends I can think of off the top of my head and they're pretty good at getting together once in a while too
I know some things are different within the NHS in Scotland and England so they'll be alot of help with any help and advice you need too.
What meds are you using? Have you ever tried O2?
Lets see if we can't do something positivie to help you!
Regards
Helen
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LeLimey
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Re: Who is who here to the newcommers
« Reply #260 on: Jan 27th, 2007, 5:14am » |
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Hello Genss, Jeff Robin and Joe and welcome!
I'm sorry I missed seeing you get here before but I'm very glad you found us and I hope we can be of help to you.
If you'd like to post a thread of your own on the board with your experiences to date and what meds you've tried etc we can all pull together to see if we can come up with anything to help you.
Robin you are welcome to post anywhere but please bear in mind we do have a supporters board especially for any help YOU need. Its a hard job being a supporter and we value our supporters higher than rubies here so a big thank you from me too for all you do. Please don't feel you can only post there though, you're welcome EVERYWHERE!!
Tony I remember you, welcome back hon how are you doing?
Take care everyone
Helen
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barrybhoy
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Re: Who is who here to the newcommers
« Reply #261 on: Jan 27th, 2007, 3:42pm » |
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Hi Helen,
Many thanks for the warm welcome - I'll be sure to take a look at Ouch! for those close to my home. Having read your own situation with CH I must confess I feel like one of the more lucky ones who don't have it as severe. It's such a cruel, upsetting illness. I can't believe there is still no known cure for it. Am also a journalist and will be writing a feature on the subject soon. Maybe you know someone in the Scottish/ Edinburgh area that might want to take part in it?
As for O2 - where could I access/ purchase it? I've tried looking, asking, but get the usual glazed look on peoples' faces.
Again, thanks for getting back to me.
B
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duckie
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Re: Who is who here to the newcommers
« Reply #262 on: Jan 29th, 2007, 6:08am » |
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Hi everyone,
I've been diagnosed since 2001 with episodic CH combined with tension HA. Looking back though I think I may have had CH since I was about 6 with breaks for a few years in between. Since 2001 I haven't had one true PF day, however haven't had a full CH cycle since 2002.
I have the awful feeling that I'm in for another cycle, sitting here with a kip 6 and increasing. Been back to the Neuro and trying Inderal, been on it for about a week and a bit and it doesn't seem to be doing much. Got given Imigran as an abortive but in tablet form and seems like it takes too long to work. Anyone have the same problem?
I'm glad I've found this site and I hope to get to know you all.
duckie (aka Lii)
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AussieBrian
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Re: Who is who here to the newcommers
« Reply #263 on: Jan 29th, 2007, 9:10pm » |
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G'day, Ducks, and sorry you have to be here, but if you're a CHead it's the best place in the world.
Firstly, don't be surprised that the Immigran isn't effective as the tablets work far too slowly, but it's also available as a nasal spray (pretty good) and as an injection which is highly reccommended by many. Shame about the cost.
Probably the most used and successful abortive is oxygen - not that expensive and remarkable few side-effects. Check the button over on the left and also have a look at http://mushys.com/kiwi which was put together by Barry from Karatha along with Mr. Happy and outlines the Oztralyan side of things.
Otherwise, stay well and don't let anyone tell you it's all in your head.
Cheers and beers,
Brian up north.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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duckie
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Re: Who is who here to the newcommers
« Reply #264 on: Jan 30th, 2007, 2:37am » |
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Thanks mate, I'll look into the Oxygen.... anything that works!!! Duckie
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Turts
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Re: Who is who here to the newcommers
« Reply #265 on: Jan 30th, 2007, 5:36pm » |
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[img][/img]
GDay
My name is Turts, im 31yrs of age and have been a diagnosed Cher since I was 18yrs old, suffered since I was 16yrs.
Legally single by have a beautiful girlfriend and supporter by my side. Just waiting for her to make an honest man of me. 
episodic sufferer, and sorry to say have also been an episodic CH.com er, hoping to get my own computer so that I make Ch.com an honest partner aswell.
On verapmil and O2.
Tried all the rest and didnt enjoy the side effects.
As Woobie can vouch, a life ambition has become to join the family at Davcon and other Convention.
Wishing you all PFDAN.
Turts
P.S. This is the first time I have added an image (shortcutted from pahlow website. Might need some help to minimse the picture so I dont scare people to death and let them get away from the beast!
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| « Last Edit: Feb 11th, 2007, 7:03pm by Turts » |
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'I'm very brave generally,' he went on in a low voice: 'only today I happen to have a headache.' (Lewis Carroll)
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Joew
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Re: Who is who here to the newcommers
« Reply #266 on: Feb 19th, 2007, 9:34am » |
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Hey all, I'm Joe and I live in London, England. I've been having headaches since Monday last week (12th Feb 2007). I went to the doctors on Wednesday and they said that I might have Cluster Headaches. It's now been a week exactly and they haven't gone away in fact they have got a bit worse. Went to the doctors today and they gave me Sumatriptan nasal spray which seems to have taken the edge off it.
I'm still not sure if I have been properly diagnosed yet and am praying that I don't have CH. I'm also frightened as hell that they are going to get worse. I think I might be a 5 on the KIP scale but that went up to 6 today. Fortunately I only get them in the day so far and have been able to sleep without interruption which is a small mercy.
So more about me and less about CH. I am 25, single, studying to be a Barrister and thankfully nearly finished, concentrating at the moment is near impossible. Here is a picture of me on holiday and before the start of this cycle (if that is what it is):
I guess you'll be hearing more from me if my doctor's diagnosis is correct but if not (which I hope) and in any case, may I wish pain free days to everyone.
Joe xXx
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LeeS
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Re: Who is who here to the newcommers
« Reply #267 on: Feb 23rd, 2007, 12:13pm » |
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Hi Joe - pleased to meet you.
I would strongly recommend getting a referral to a neurologist to confirm your diagnosis. Have you completed the cluster quiz here on the left?
Please feel free to IM me if you'd like any details of treatment etc., in the UK (I'm just north of London btw) or just fire away with any questions or concerns you may have here on the boards.
-Lee (who's keeping an eye out for limey-bird  )
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chrisw
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Re: Who is who here to the newcommers
« Reply #268 on: Mar 1st, 2007, 1:39pm » |
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hi everyone,
Im christine, 37 yrs old, live in new jersey. I havent been here in a long time, because stupid me actually thought that I was cured. I started verapamil during my last ch bout, almost two years ago. It seemedto work so good. clusters cleared up, and i stayed on a very mild dose ever since then. I thought I would never get them again. Well they are back with a vengence and the verapamil isnt working like it did before, and Im on too many meds to list. Nobody else would ever understand except another cluster head. Sometimes it would be nice to talk to someone who knows what we go through. I have never met another person with this problem.
I have a great family, three kids and a great husband who goes through hell with my problem as well. Now I have the underlying pain that never goes away, like leftover damage or somehting. Thank god I finally found a doctor who knows what she is doing. I will go and put a smile on and stop complaining because I think everyone around me is sick of hearing that my head hurts. Maybe somebody on this site can understand when nobody else can
Chrisw
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seasonalboomer
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Re: Who is who here to the newcommers
« Reply #269 on: Mar 1st, 2007, 1:59pm » |
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chris,
welcome back, sorry for the reason.
as your present preventative is not working it may be worth considering a solid abortive approach so that the hits that do come can be managed better.
1.) have you tried O2? If not ask your doc to get you a prescription ofr home oxygen, and very importantly, 10-15 lpm regulator volume capability, and a NON-rebreather mask.
2.) have you tried injectable imitrex? it's pretty darn good for many of us. Kills a hit in less than 10 minutes --
3.) some folks have success attacking a hit with Red Bull Energy Drink or strong coffee if we can get to it in the formative moments.
If you can get some relief with the above abortives you can then get some rest and feel better about your world when you are in cycle. Think about it, if you could effectively kill 4 of 5 cluster hits in less than 10 minutes wouldn't your quality of life improve?
Scott
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chrisw
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Re: Who is who here to the newcommers
« Reply #270 on: Mar 1st, 2007, 3:10pm » |
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Scott,
Thanx for the help, Ive got a tank of O2, and a cabinet full of Imitrex shots. I try not to us e them unless im in a full blown 10 scale ha. They work really good, but I just feel like crap all the time now. I cant take imitrex all day every day I swear, one day these things will be the death of me. either i will have a heart attack from all the meds. or a stroke or suicide. im not having full blown pain its just like im always on the verge. how are you coping?
Chris
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Hikerguy
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My head hurts a little....got an aspirin?
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Re: Who is who here to the newcommers
« Reply #271 on: Mar 1st, 2007, 4:22pm » |
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Hello,everyone I'm Chris from Syracuse NY ....(go orange)
I have been episodic for 14 yrs
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thebbz
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Re: Who is who here to the newcommers
« Reply #272 on: Mar 1st, 2007, 9:08pm » |
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Hikerguy,
Welcome and post a houdy in the getting to know you section. There's a few from your area here. Stick around
jb
Go Blue!!
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rossybabe
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PFD forever ultimate wish!
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Re: Who is who here to the newcommers
« Reply #273 on: Mar 1st, 2007, 11:00pm » |
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Hello !
My name is Rosa, I am from Mexico, I have been a CH since I was 12, I am 35 now so it's like being with me forever, started chronic, then episodic, while in college back to chronic and then episodic again...right now I am in the crest of the season..hopefully one more month to go and then some relief  ..
I am happily married with a CH free man luckily (irish american) and have a beautiful 5 years old little daughter (my precious princess) who is the main reason for me looking for support and company on my horrendous days with the monster...
I found the site and read some of the posts..feels good not to be alone...even when we are talking about something so terrible as CH 
some of my relatives suffer from migraines but CH just me..thanks GOD..I would not wish for them to have one single one of mine...ever!
I will be around for sure, hope to make some friends..
Wish you all lots and lots of PF days !!!
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Thanks Lord for giving me CH so I may love and enjoy even more the days I do not have to suffer it...amen.
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chrisw
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Re: Who is who here to the newcommers
« Reply #274 on: Mar 2nd, 2007, 9:40am » |
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Rosa,
I am so sorry that you are going through this. I feel for you, and I understand because I am feeling the same pain. Where in Mexico do youlive? I just got back from a cruise, we had one day in Cozumel, and I thought that it was the most beautiful, fun place ever. I want to go back soooo badly. the people there were so nice and friendly, the beaches were beautiful. The weather was great, while the weather here is freezing and wet. Cant wait until spring.
Chris w
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