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Topic: I'm new (Read 476 times) |
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wysper
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Hi my name is Stephanie and I have been dealing with cluster headaches since I was about 14 years old. I know thats rare cause I've been doing some research (now that there actually is someting to research) and I know it most common in men ages 20 and up. None the less i have been dealing with clusters for 10 years now. I remember my first one plain as day. I woke up around 2 with the most horrible pain I have ever experienced. My clusters are always on the right side. I cried for my mother and she came running. She sat with me with a heating pad on my head for 3 hours while I rocked back and forth in the bed, wriggling my legs and crying for her to take the pain away. The episodes are pretty much the same now as they were then. I still cry for my mommy and rock back in forth and flop all over my house and bed. I started going to the ER for my episodes and foud that narcotics help but only for that specific one and I can't keep going back they will think I'm a seeker. I was given oxygen at the hospital once but it didn't seem to help much. All though at the time I was in the middle of one of my worst episodes ever and on top of that I was dealing with stupid doctors who didn't know what cluster headaches were. I hope that this cycle will be short like the last one was (only 2 weeks) They usually go about 4-6 weeks. I feel very bad for my girlfriend. We have been together for a year now but this is the first time she has ever seen me like this I feel so helpless and hate that she feels that way too. I'm very glad I found this site I don't feel so alone now.
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Kevin_M
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withered branches grow green again.
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Re: I'm new
« Reply #1 on: Sep 8th, 2006, 3:45pm » |
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on Sep 8th, 2006, 3:32pm, wysper wrote:| I was given oxygen at the hospital once but it didn't seem to help much. |
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Hi Stephanie,
It would be worthwhile to not give up on oxygen. If administered at the ER, the flow rate and mask can make a big difference. It would be worth a try if you do see a doctor again for this cycle, there can be a difference in doctors when it comes to CH.
What has helped you get through the previous cycles and up to now?
Your not alone here and help is whenever you ask anything.
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wysper
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Re: I'm new
« Reply #2 on: Sep 8th, 2006, 3:53pm » |
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I'm not opposed to taking oxygen at all, I was only offered it once and didn't know until now that it is as effective as people say it is. The only thing I've tried is what my doctors give me and that's narcotics. By the time they kick in and give me any relief I'm almost finished with my cycle. I'm in the process of finding a neuroligist that acceots my insurance, I'm on medicaid and it's hard to find a doc within 60 miles of me that accepts medicaid. Just recenty I found info about clusters so now I'm trying to soak up as much info as possible for myself and my family.
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Kevin_M
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Re: I'm new
« Reply #3 on: Sep 8th, 2006, 4:02pm » |
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on Sep 8th, 2006, 3:53pm, wysper wrote:| Just recenty I found info about clusters so now I'm trying to soak up as much info as possible for myself and my family. |
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There is family help, insurance type help and a lot of info to be found, just ask.
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Katherinecm
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Re: I'm new
« Reply #4 on: Sep 8th, 2006, 4:44pm » |
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Hi Stephanie,
Welcome to the board. I'm sorry you're having such a hard time right now. You're in the right place! As far as what drugs to try, you might want to print out this and take it to your doctor: http://www.brightok.net/~mnjday/chtherapy.pdf
An important thing to know about CH drugs is that nothing is going to work 100%, but several things in combination are going to help a lot. Narcotics only help somewhere between 12-20% of people.
The first thing to get on is a preventative. Preventatives will hopefully reduce the number of headaches you get, and make the ones that you do get less severe. The most effective one for most people is Verapamil, and that would be the one I would try first. It takes a few weeks to build up though, and because of that some people take a short course of prednisone to help in the meantime.
When you do get a headache, oxygen is effective for most people to stop it quickly. It's also cheap and won't cause rebounds, addiction, or long-term health damage the way other drugs can. You do need the right kind of mask and flow rate or it doesn't work.
If the oxygen still doesn't work, you can take an injection of imitrex. It's a kind of drug called a triptan, and it works to stop the headache completely rather than mask the pain the way narcotics do.
Anything else that comforts you, such as heat or cold applied to your head, red bull or other caffeine is worth using too.
The most important thing is to read, read, read. Learn as much as you can about this and feel free to ask questions. The things I suggested to you are the most effective things for most people with CH, but they don't work for everyone. For the most part they don't work for me. But that's still where I'd start because they seem to be the most effective for the most people. Talk to your doctor about your options, and don't be afraid to get a new doctor if you don't feel yours is helpful.
As far as your girlfriend, you might start by giving her a printout of this letter, then talking about how it's different for you: http://www.ouch-us.org/chgeneral/colleagueletter.htm
If you need anything, even if it's just to vent, feel free to contact me.
Katy
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http://www.squidoo.com/clusterheadaches/
"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin
"It is not death or pain that is to be dreaded, but the fear of pain or death." Epictetus
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Superirish2005
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whyser, good luck here. This is my 100th post and I have already been yelled at, scolded, threatend and attacked. I came her for help and feel not wanted.
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LeLimey
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OUCH-US - Less "ME" and more "WE"
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Re: I'm new
« Reply #6 on: Sep 8th, 2006, 5:50pm » |
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wysper
please ignore the post from superirish. He's pissed because he came looking for advice, disregarded it, grew pffensive when questioned as to his condition and frankly, behaved atrociously.
We WILL do all we can to help, we will ask questions so we don't give you info you already have and we will relate our experiences.. I kind of think that's why you're here though based on your first few posts!
Welcome, sit down, pull up a pew and lets see if we can't get you sorted.
Best wishes
Helen
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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kissmyglass
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Don't Mix Triptans
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Re: I'm new
« Reply #7 on: Sep 8th, 2006, 6:02pm » |
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Hi Stephanie,
Welcome.
Yes, ignore superirish, he's just an attention seeking drama queen.
There are tons of great people here to help & tons of great stuff to read. read read read this site & go to your doc armed with info.
Good Luck!
Kev
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"It does so fucking look like her" - Picasso
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BB
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I love YaBB 1G - SP1!
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Re: I'm new
« Reply #8 on: Sep 8th, 2006, 6:54pm » |
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Hi Stephanie,
Welcome and sending you good vibes and painfree wishes. 
Just a note that we extended the same welcome and help to SuperIrish but he chose not to try the various medications suggested. But thats him and it has nothing to do with you.
Please do get home oxygen with a NON REBREATHER mask and a flow rate of at least 8, preferrably 12-15 L/min. As soon as the pain starts use it and take regular deep breaths for 15-20 mins, it can stop the attack from comming and ease the pain.
Then you can look at other abortive such as strong coffee, energy drinks that contain caffeine and taurine and Imitrex injection or nasal spray. At the same time try to get on some preventives such as Prednisone which is a steroid to be used short term and Verapamil which is a medication for blood pressure which also stablelise the blood vessels in the brain.
By the time you have oxygen, caffeine, Imitrex and Prednisone/Verapamil up your sleeves you will be much more in control of the attacks and then if they have not worked perfectly, you will have time to look at what else to add on or try.
Take care and God bless. Keep us updated as to your progress.
Annette
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wysper
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I love YaBB 1G - SP1!
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Re: I'm new
« Reply #9 on: Sep 9th, 2006, 11:22am » |
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Thank you Katy for the link to the info
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The mad viking
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Always Look on The Bright Side of Life
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Re: I'm new
« Reply #10 on: Sep 9th, 2006, 11:32am » |
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Get this mask and use at least 12LPM with O2
Wish i had a pic on the clustermasc bc thats even better
Svenn
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Always Look on The Bright Side of Life
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Katherinecm
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Re: I'm new
« Reply #11 on: Sep 9th, 2006, 12:20pm » |
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You're welcome.
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http://www.squidoo.com/clusterheadaches/
"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin
"It is not death or pain that is to be dreaded, but the fear of pain or death." Epictetus
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kcakebread
New Board Newbie
Posts: 17
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Re: I'm new
« Reply #12 on: Sep 10th, 2006, 3:16pm » |
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I'm female, and I started getting headaches at 20. They were diagnosed as migraines. They may have been migraines then, but they're definitely clusters now. I think the assumption that women don't get clusters tends to skew the initial diagnosis towards migraines. I've lived with these headaches fo 20 years, so I know there are lots of options out there. Sometimes, something works for a while and then stops working. Don't get discouraged.
kfc
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