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Topic: New New New (Read 289 times) |
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zombie dame
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New New New
« on: Jul 20th, 2007, 12:44pm » |
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Hey, I'm Ericka and I'm turning 20 on the 26th. I just found out this week that I have cluster headaches. I've been having the most excruciatingly painful headaches for the past three weeks now, and I've been in the dr.'s office all week. he's been trying to prescribe me everything and anything in a last ditch effort to get rid of the headaches before he has to diagnose me with cluster headaches, which he told me was the cause if this last treatment did not work by this weekend. i'm in the midst of his last attempt, percocet, which does absolutely nothing, so i have to go in next week and talk to him about what meds i'm going to be put on. it's been nothing but a nightmare looking at all the different options and all of the different things every website says about them. it's also very frustrating to know that there aren't any actual medications made for this syndrome. so, i'm pretty much all confused and quite annoyed. and when i told my mother, all she could say was "that's what you get for spending all night and day in front of a computer"... it was oh so compassionate to say the least... especially considering that i'm a computer graphics technology major and a web developer. so, hello everyone, i'm glad i've found a site that is a little bit easier to understand and get info from. if you have anything to say that will help a newbie like me, it'd be greatly appreiciated.
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Bob_Johnson
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Re: New New New
« Reply #1 on: Jul 20th, 2007, 1:15pm » |
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First of all, if pain meds is the first response from the doc, you have the wrong person. This is the least effective approach.
Finding a good doc:
1. Search the OUCH site (button on left) for a list of recommended M.D.s.
2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.
3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.
4. http://www.achenet.org/physicians/ On-line screen to find a physician.
5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder" which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
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Next, here is the latest thinking on treatments:
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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Then explore the buttons on the left and they will lead to many secondary links for information. Reading and learning will be the second best thing to do (first, being a good doc).
Stay in touch and ask. Folks here are generous to a fault!
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Bob Johnson
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seasonalboomer
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If I think hard enough maybe it'll go away.....
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Re: New New New
« Reply #2 on: Jul 20th, 2007, 1:20pm » |
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Welcome - sorry you have to be here.
There are treatment options for Cluster Headache. Don't let anyone tell you otherwise -- and if it is an MD telling you this either a.) find a new MD, or b.) quickly get a referral to a competent neurologist.
Many of us are able to manage our cluster headaches using a variety of approaches. From classic pharmaceuticals to "alternative" treatments, you will find people here that make use of different approaches. Most importantly, very few people, after having spent time here simply sit around waiting for the next CH only to lie around in pain.
I personally have great success with Oxygen (12-15 liters per minute using a non-rebreather mask). When that doesn't work I do have excellent results with Imitrex injections - they take about 4-6 minutes and then the headache is GONE.
Search this site for the links to O2 information and treatments and learn them and take the info to your doctor -- your life will be changed.
Scott
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seasonal boomer
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Guiseppi
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Re: New New New
« Reply #3 on: Jul 20th, 2007, 1:55pm » |
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Bob and Boomer have given you a great start so some generic advice after 30 years with these things. First off there is NO CURE! That's the bad news. The good news is they can be managed. It take a two pronged approach.
1: You need a good preventative medication. This is something you take that reduces the frequency and the severity of your attacks. I use lithium, other use verapamil and topomax. The bad news with this part is it's a lot of trial and error to find what works best for you.
2: You need a good abortive. Something to stop the pain when it starts. (Stay away from pain killers, they don't work against ch and will cause you amny many problems) I use oxygen and what that fails, I use the imitrex injections. You have much reading to do and you DESPERATLEY need to get to a neuro or a doc who understands CH. Welcome to the board and i hope you find releif soon. I have a daughter your age and it would be horrible to think of her hurting without any help!!!!!
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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Rosybabe
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Re: New New New
« Reply #4 on: Jul 20th, 2007, 4:27pm » |
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Hi Erika!!
Welcome aboard!! Glad you find us, not happy for the reasons.
The guys have given you good advice.
Keep reading , the more you know about CH's the better you will be prepare to fight "the beast".
We will be here , Clusterville never closes 
Rosy.
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 Believing is just the beginning!
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thebbz
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Ow,Ow,Ow
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Re: New New New
« Reply #5 on: Jul 20th, 2007, 6:36pm » |
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Your right at the age of onset. So young.
The above advice is very good, you will do well following it. Welcome and dont forget to breathe. CH will not kill you. Hurts like hell though. Study read and study. Knowledge is power against the beast.
02,02,02 first line abortive.
all the best
jb
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It wasn't me I didn't do it
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SmoothSippin
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Re: New New New
« Reply #6 on: Jul 20th, 2007, 11:40pm » |
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It is sad to see another "welcome" here. However, I was 17 when I had my first CH. I of course had no clue what they were and I was never properly diagnosed until I was 26. I am now a "tad" older than that and I still get them . Thankfully episodic. However, one thing that you may want to remember is that when you are having one to remind yourself (constantly) that it will stop soon. Also, most of us have "triggers". Alcohol is a major trigger for people. Avoid that if you do not already.
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Barry_T_Coles
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Re: New New New
« Reply #7 on: Jul 21st, 2007, 6:58am » |
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Hi Ericka 
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Worry is like a rocking chair it gives you something to do but gets you nowhere.
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zombie dame
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Re: New New New
« Reply #8 on: Jul 25th, 2007, 10:22am » |
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Thank you for all of your replies. I have an appt. with a neurologist now, so I'm hoping that I'll be able to work something out with her that will help me.
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Sandy_C
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Re: New New New
« Reply #9 on: Jul 25th, 2007, 3:21pm » |
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That's good news! Please let us know how your appointment goes. Print out the information that you've been given above and take it with you to the neuro. Oxygen has been proven a Godsend to abort a hit within minutes, so demand that your neuro prescribe it for you. If it works for you, you will never be without it. If it doesn't work for you, then you haven't lost anything (it's not that expensive, and side effects are nil).
Can't wait to hear how it goes. Best of luck.
Sandy
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Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on
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