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Topic: Diagnosed today. (Read 427 times) |
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klingejm
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Life is pain; ya just get used to it.
  
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Diagnosed today.
« on: Dec 18th, 2007, 12:12pm » |
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I have had horrible headaches since I was ten and I have always thought they were sinus problems. Recently the headaches returned and sinus meds were not doing anything at all for me. I got on the internet and found out about CH, which matched my symptoms more closely than sinus pressure. I am Native American and therefore I had to go to a walk-in Indian clinic here in Oklahoma. I did not expect to get much help. However, the doctors called me back, discussed my symptoms with me, and are in the process of actually getting me to a neurologist. They prescribed me Cafergot, and told me to come to their ER if I feel that i need oxygen to help me get rid of a headache. I just wanted to say thank you to all the people on this board who have posted such a broad base of information, without which I might still be subjecting myself to abnormally high levels of psuedoephedrine. Because of this website, i was able to finally discover why my so-called sinus pain was worse than anyone else's. It's because it wasn't sinuses at all, but CH. Thank you again, and I will update after I see my neurologist.
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Monty
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Sounds like you are on the right track!!
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Bob_Johnson
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Re: Diagnosed today.
« Reply #2 on: Dec 18th, 2007, 12:31pm » |
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Wonderful that the health service has taken care of you so well!
I'd suggest that the Cafergot may not be the best abortive for Cluster--but continue to use until it fails. Our collective experience here is that it's often too slow acting and not strong enough.
Suggest you print out the Rozen article and explore the second site. They both list lists of current therapies which, should you need an abortive which is more rapid acting, will allow you to have the information on hand.
Also look at the list of preventive meds. Usually, we go on preventives once we understand that a cluster cycle may last more than 2-3 weeks. Again, your experience will direct you. Abortives are fine but a preventive saves pain and $ !
Explore the buttons on the left. Abundance of information.
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Bob Johnson
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George_J
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Re: Diagnosed today.
« Reply #3 on: Dec 18th, 2007, 12:32pm » |
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Welcome to Clusterville.
Sounds like you've gotten a good doctor, and are headed the right way. Let us know how your neuro visit goes.
Best wishes,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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Guiseppi
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Re: Diagnosed today.
« Reply #4 on: Dec 18th, 2007, 12:34pm » |
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Congrats on getting a diagnosis, a big first step! When you go to a neuro he's gonna put you through a lot of tests to eliminate anything else. Once he decides it is CH you'll want a 2 pronged approach to battle them
1: A preventative regimen. A medication you regularly take, which will reduce the frequency and the intensity of your attacks. I use lithium, other popular prevents are verapamil, (at fairly high dosages) and topomax.
2: an abortive regimen. The headache is starting, now what. Your first line abortive should be oxygen. It's cheap, no side effects, and can be incredibly effective. I have an over 90% success rate aborting in less then 10 minutes using oxygen, sometimes as quickly as 6 minutes. You need to get it prescribed so you have it at home as it must be started as soon as you feel the head ache coming on. By the time you drive to the ER the headache will be firmly established and the oxygen probably will not be effective.
Other aborts are imitrex injectables or nasal sprays, pills take too long to absorb ad aren't as effective for CH. For now, try slamming an energy drink containing caffeine and taurine, at the first hint of an attack. Many can baort with just that. Strong coffee also helps in a pinch.
Good luck at the neuro and welcome to theboard!
Guiseppi
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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Sandy_C
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Re: Diagnosed today.
« Reply #5 on: Dec 18th, 2007, 1:28pm » |
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Welcome to the zoo! I'm sorry you have CH, but this is the best place to be since you have it. There is more combined knowledge and experience from the people here than you will find anywhere else.
I'm glad your clinic doctors are getting you to a neuro. All of the information above about preventatives and abortives are sound, tried and true things that have worked for many here. Read everything you can on this site and on the OUCH website (see buttons to your left).
Good luck with your neuro, and let us know how it turns out.
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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BarbaraD
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Re: Diagnosed today.
« Reply #6 on: Dec 19th, 2007, 8:34am » |
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I have to disagree with Bob about the cafergot -- I've used it for years as an abort. I mostly use the pills and find that they work great and last longer than the trex with less side effects (for me). It also comes in suppositories that work faster (I'd suggest you ask for Cafergot PB because the ones without phenobarb will make you very nauseated).
Melatonin (12-15mg) at night has stopped the night hits for me and I swear by it.
Topamax has been my prevent but I take the whole dose at night to eliminate the side effects. (It has a sedative effect and gives a dopey feeling if taken during the day).
Red Bull energy drink is great if chug-a-lugged at the first sign of a headache.
O2 is still the choice of most of us as a prevent. It's harmless to your system and works most of the time for most of us if we get to it as soon as we feel the HA coming on. But it has to be on at least 15 liters a minute with a non-rebreater mask. I usually down a can of Red Bull and then hit the O2. Works most of the time.
Oh, Welcome to Clusterville. We're here for support and help. We don't always agree with each other, but we're a good bunch of people. One thing to remember - what works for one doesn't always work for another. We all have to find OUR magic bullet and sometimes that takes trial and error until we find it. All we can tell you is what works for us - then you can discuss YOUR treatment with your neuro and see what will work for you.
One other thing -- a predisone taper pack usually helps while your prevent meds are getting into your system.
Keep us up to date.
Hugs BD
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What don't kill ya, Makes ya stonger!
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Bob_Johnson
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Re: Diagnosed today.
« Reply #7 on: Dec 19th, 2007, 11:16am » |
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Forgot to post the links!
http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
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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. Written by one of the better headache docs in the U.S. (2002)
http://www.plainboard.com/ch/chtherapy.pdf
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Bob Johnson
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phil098342wq
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I love YaBB 1G - SP1!
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Re: Diagnosed today.
« Reply #8 on: Dec 19th, 2007, 6:21pm » |
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Since being diagnoised in 2004 I have found the following helpful-
Research, after all its body and we are all diffrent
Post often, we all suffer from the demon, or know someone who does
You are not alone
It may seem scary at first, it was for me, but I have been able to get a handle it for the most part
Try not to let it take over your life
Get a note from your dr, or take the one from ouch and have your dr fill something out for the ER to see and start treatment asap, even if it is o2 in the waiting room, Last Jan I went to ER and it took sooooo long for them to treat me
I was lucky that I was diagnoised during my first attack. All I had was eye pain but when everything came back normal they decided to put in an IV, then numb the eye, the pain was bad that I feel out of the chair right on the floor and it took 2 drs and a nurse to get me to the gurney. Work closely and honestly with your docs and family. Its managable. Here's to you winning over the demon.
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