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Topic: Hello, I'm new. (Read 906 times) |
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8holly8
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Hello, I'm new.
« on: Aug 8th, 2005, 4:32am » |
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 Hey guys.
I had my first cluster two years ago when I was 18. My doctor gave me a funny look and some painkillers. Last week I was hit by another cluster and went to see a different doctor. He told me they were cluster headaches and sent me away with some painkillers. Great stuff, no info, no explanation just a "don't worry there's nothing wrong inside your head, they're only headaches."
ONLY HEADACHES?????????????????!!!!!!!!!!!!!!!!!!!!!!!!
I'm at Uni. and so far I've only had 2 clusters both during holidays. I really worry about what would happen if I got one during exams.
I think the people I live with think I'm making up how painful it is. They think I should lie down if they're that bad, but I pace about the house clicking my fingers to distract myself from the pain.
Still, that's enough complaining, it could be worse. I often wonder about the people in developing countries who get clusters and don't have access to doctors or painkillers.
Pleased to meet you all.
Didakoi 
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gore2424
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Re: Hello, I'm new.
« Reply #1 on: Aug 8th, 2005, 4:41am » |
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Hello sorry you too have the clusters BUT I would like to be the first to welcome you the greatest web site in the world for information and support for any suffer of clusters. The first thing you would want to do is read read read when I first found this site I read for months and months before even joining the family here I have gotten almost all of my info about clusters from meds to O2 to finding the right neuro right here and you just cant find a better bunch of people for support here there is even a yearly convention as you will find out and only six blocks from where I live in Davenport Iowa USA the last two Jan. there has been a meet and greet where poeple come for the weekend and sit around and chat and compare notes. so once again welcome and I hope this helps you in your struggle with the clusters Terry
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I said your hair looks nice Ü
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AussieBrian
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Re: Hello, I'm new.
« Reply #2 on: Aug 8th, 2005, 4:48am » |
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G'day, welcome aboard, and it's nice you're also thinking about others perhaps worse off.
Firstly, if you've got CH, you're in the right place. But please take the time to look at the Cluster Quiz on the left. There's lots of other headache types that mimic ours and it's very important that things are right from the start.
As you've already discovered, doctors aren't always as helpful as you'd hope.
Look around the board, there's lots of info here along with any number of your countryfolk, and ask all the questions you like. We're perfectly happy to help. A little more about your symtoms and the like would help, too.
All the best for the moment, but be sure to stay with us,
Brian.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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LeLimey
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Re: Hello, I'm new.
« Reply #3 on: Aug 8th, 2005, 5:13am » |
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Hiya!
I'm sorry yo have had cause to come looking but I'm very glad you've found us.
I clicked on your profile to see where you are in the UK and I see you are in Exeter.. you're in luck! I can't find the details yet, I've just been looking on OUCH UK for you and I can't find the right thread but I know I've read about a headache specialist clinic there. The extremely good news is there are a couple of nurse specialists there as well as the doctors who are extremely knowledgeable about CH so you will be in very good hands and because its in the same area as you no problems with an out of area referral either!! woo hoo!
Have a look at OUCH UK,
http://www.clusterheadaches.org.uk/home/index.cfm?address=../home/txt_we lcome.cfm&added=Dec2001&code=AD
Post a question about the Exeter Clinic on the support board there, its manned by volunteers who will get back to you ASAP and there is also a helpline 0161 2721702 which is manned by sufferers. As you've already found by finding this site, nothing beats being with people who know and actually talking to another sufferer for the first time is incredible. (Its an answerphone.. call, leave your number and someone will call you back)
Keep us updated on how you are getting on okay?
Helen
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sassy_lady
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Re: Hello, I'm new.
« Reply #4 on: Aug 8th, 2005, 6:22am » |
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Welcome,
sorry to meet you under these painful days,
read & read.. have ?'s ask them, very helpful place here..
Lots of Love & Prayers !!
Jolene
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jcmquix
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Re: Hello, I'm new.
« Reply #5 on: Aug 8th, 2005, 6:49am » |
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Hi...
Nice to meet you, sorry its under these conditions. You are in the right place for Cluster Heaaches.
Just Headaches ..??? (CH is not just a Headache)..
These are not just headaches, some of the women here on the board that have them, say they are more painful than child-birth, so its not just a Headache. Pain Pills usuall will only make CH worse.
Follow the advise that LeLimey has given you, she is very wise on CH (Cluster Headaches), Read, Read & Read.. all the info you can on this site, check out the links to the left. This site not only has the most information on CH.. It also has a wonderful Family that you can Lean on and get support from in your times of need. Someone is always here 24/7/365, the lights are always on.
If you have a question.. ask it.... If you are having a bad day.. vent it... this place saved my life & my family...
PFDAN to YOU !!!
Charlie
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
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Bob_Johnson
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Re: Hello, I'm new.
« Reply #6 on: Aug 8th, 2005, 7:40am » |
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Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
This is a good document written by one of the better headache doc in the U.S.
Look for his comments on olanzapine (Zyprexa) as an abortive. I mention this because it would be easy to carry these pills with you in case an attack hits while in class, taking a test, etc.
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Bob Johnson
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SusieWong
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Re: Hello, I'm new.
« Reply #7 on: Aug 10th, 2005, 4:25am » |
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Hi,
One of the worse things about CH (apart from the pain) is the lack of understanding of the condition. 'Headaches' - what a misnomer. Look at the UK site-Le Limey has given you the link, and print off the information there. Show it to your housemates and your personal tutor so they know what you are battling against.
You should ask for a referral to a neurologist who specialises in headaches, Le Limey has mentined the headache clinic in Exeter. Getting the the diagnosis confirmed, is the first step towards getting effective medication.
Do ask for help on the UK boards, Helen (LeLimey) is right, the people there will help you to get what you need.
Suex
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Tomorrow is another day.
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burnt-toast
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Re: Hello, I'm new.
« Reply #8 on: Aug 10th, 2005, 8:12am » |
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Welcome Abord.
A word of caution of pain killers - be careful of addiction
It may be that you do not have frequent attacks that you are finding relief with them. But most find them to be ineffective for more frequent clusters.
Gather information from the site and find options to prevent and abort clusters without pain meds. At least you'll have it if your condition changes.
Good Luck
Tom
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
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Barry_T_Coles
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Re: Hello, I'm new.
« Reply #9 on: Aug 14th, 2005, 11:43pm » |
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Hi from Australia sorry you suffer from CH but you are in the best place here for info & support, what these people dont know about CH is not worth worring about.
You say that people dont understand you and what CH is.
Try this
I found the best way to let people know what you are going through is to print off the piece that was written by Margi, it's in the window to the left under cluster traits, it explains CH very simply and saves you the extra pain of trying to get the message across.
Like everyone before me has said read-read and read again there is just so much info here that will help and ask questions ( No question is dumb, Not asking is )
Kind Regards
Barry
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Worry is like a rocking chair it gives you something to do but gets you nowhere.
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8holly8
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Thank you all
« Reply #10 on: Aug 15th, 2005, 4:30am » |
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You're all very helpful and friendly. Thank you.
 I'm now into my 3rd week of a cluster, I've only had them last for 1 week before. I'm tired and ratty, I'm sick of people asking me why my right eye's watering and damn it I keep missing parties! 
Any day soon I should get info through the post about a local CH group, I can't wait. Hopefully with some help I'll be able to get my doctor to give me some medication. I've only got a few weeks left of my holiday to spend with my boyfriend before I move 10 hours away and my only wish is that I could be free from CH nightmare.
I'm pretty new to the CH thing and I'd love to know how you guys stick it out.
PFDAN to you all.
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| « Last Edit: Aug 15th, 2005, 4:33am by 8holly8 » |
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AussieBrian
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Re: Hello, I'm new.
« Reply #11 on: Aug 15th, 2005, 5:08am » |
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How do we stick it out? What a delightful question and I haven't the first idea how to answer it.
I guess we've all learned different ways of coping, it just comes with the territory, and there's other times we don't cope at all.
I'm going to ask a few friends about this. Thank you so much for phrasing it so nicely.
Good luck and kindest regards,
Brian.
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Vulcrania horrendus - twice daily, then two at night in lieu of sleep.
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jcmquix
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Re: Thank you all
« Reply #12 on: Aug 15th, 2005, 5:37am » |
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on Aug 15th, 2005, 4:30am, 8holly8 wrote:.
I'm pretty new to the CH thing and I'd love to know how you guys stick it out.
PFDAN to you all.
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As Brian stated... this is a good Question... I can tell you its not that easy, you are always learning different ways of dealing with CH...
This site is one of the best ways that I have found to deal with CH, I am Sad to see other people with CH, but its somewhat of a comfort to know that you are not alone..
My Wife (Sassy_Lady) & Family help me to deal with this, I was about ready to give up myself, then my wife came to this site and got a true understanding of what I was going through, now we both know how to deal with the BEAST and we are beating it with Knowledge & Understanding...
The people on this site are the best people in the world, when you come here and are hurting, everyone feels for you and you know that what they say is true cause they are going though it or have been through it, its not just someone saying they understand.
You can come here for Support, You can come here and Rant & Rave, You can come here and ask Questions, or if You just need someone to talk to, someone is always here, the lights are on 24/7/365...
Support is Great, but you also need to Read, Read & Read all the information on this site, and really get to know what it is that you fighting, as I said Knowledge is one of the BEST weapons against the BEAST...
Praying & Wishing You PFDAN's !!!
Charlie
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
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