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Topic: What can I expect (Read 273 times) |
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argeebee
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Keep smilin'
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What can I expect
« on: May 17th, 2006, 2:16am » |
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After 10 years of ch's I was just diagnosed today. I can't believe that I have been to numerous doctors who have not picked up on the symptoms.
Even the doctor today only prescribed me pain relief without discussing possible preventative measures. He said he had only come accross one other patient with this condition and admitted he didn't know much about the condition - I still don't think he understood the extent of pain invloved with this
I went searching myself and came across this site among other articles. My first reaction is that I'm now scared shitless. My attacks are episodic on close enough to an annual basis and only last 2-3 weeks. I'm struggling just dealing with that but to see so many who have much more frequent and long lasting episodes makes me wonder what I'm complaining about - not to mention those who are chronic sufferers (how do you go on?).
Does this complaint escalate? or have people gone into permanent remission as they get older?
It seems from my limited reading that oxygen is a common remedy - can someone give me the low down on this - when do you take it? What effect does it have on the pain? etc etc
My symapathy is with all sufferers out there and my heart bleeds for those that suffer more than me.
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Kirk
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VINIMUS, VIDIMUS, DOLAVIMUS
    
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Re: What can I expect
« Reply #1 on: May 17th, 2006, 2:36am » |
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Being chronic isn't fun. You just keep on going. Nothing else you can do.
As for the O2. You need a non-rebreather Mask, and a regulator that goes to atleast 15 litres a minute (15 L/Min.). You use it at the very first sign of a CH coming on. If you're lucky it will keep you attack down to around a Kip 4. At any rate it should stop the attack in about 10 minutes for most sufferers.
There is bunches of info on the left. So read up. Which preventatives and abortives will work for you, takes a bit of experimenting.
The Triptans, like Imitrex Stat Dose injections work for a lot of people as an abortive.
Others like myself can't use them or find them of no use. Go figure.
Right now, I use 100 Mg. of Topiramate a day as a preventative and O2 for an abortive. When I'm not near my O2 for some reason, I use 5 Mg. of Olanzapine to abort an attack.
Your milage may vary.
Hopefully your cycle will not increase over time, and perhaps one day you will go into remission.
So just hang in there, maybe we can help with some advice and support.
Welcome to the maelstrom. I wish you didn't have to be here.
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AussieBrian
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Got beer?
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Re: What can I expect
« Reply #2 on: May 17th, 2006, 2:37am » |
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G'day Argy, and sorry to meet you here but it really is the best place to be. Lots of great people, good info and all questions answered as best we can.
Regarding oxygen, click here http://www.mushys.com/kiwi/
Then give me a couple of minutes while I track down another excellent that I'll send you by PM.
Cheers and beers,
Brian.
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Bob_Johnson
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Re: What can I expect
« Reply #3 on: May 17th, 2006, 10:53am » |
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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
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
And also explore the buttons on the left of this page.
Fast, sharp learning curve will be your best friend right now.
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Bob Johnson
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BobG
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Re: What can I expect
« Reply #4 on: May 17th, 2006, 9:39pm » |
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Can't add much to what has already been said. Just welcome and sorry you had reason to come looking.
We have quite a few good poeple here from down under. They're all very knowledgeable and willing to help you get through your clusters.
Quote:| I went searching myself and came across this site among other articles. My first reaction is that I'm now scared shitless. |
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This site has been here for 7 years. There is more first hand knowledge here than anywhere in the world. These people are the experts.
We all get scared. It's normal. But, there is help. Read all you can, keep in touch, and let us know how you are doing.
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argeebee
New Board Newbie
Keep smilin'
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Re: What can I expect
« Reply #5 on: May 17th, 2006, 10:02pm » |
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Wow !!
Finally some answers to what this beast is about.
Thankyou for your contributions - I have been reading just about non-stop since I found this site yesterday (should really be working but I'm afraid this takes precedence). Some fantastic information so far - some of which I have already forwarded to my doctor so he can hopefully better manage my affliction - and any other poor mongrels out there that he comes across.
Whilst I still had a visit from the beast last night I was comforted in finally knowing that there is a way forward which took the fear factor out of the equation - that scumbag pain is still there though (for now).
Thanks again.
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thebbz
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Ow,Ow,Ow
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Re: What can I expect
« Reply #6 on: May 17th, 2006, 10:22pm » |
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Glad you found the site, I would only add to the sound advice above. You were diagnosed by a GP who admittedly does not know alot about CH. He or she should refer you to a neurologist for proper diagnosis. Pain killers are useless in my opinion. More than likely will make matters worse.
Read the good stuff on the left ,keep a diary,and let us know how it develops.
all the best
jb
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