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Thank God there are more people like me!!! (Read 769 times)
jchange79
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Thank God there are more people like me!!!
Jun 26th, 2011 at 7:38pm
 
Hello just wanted to introduce myself to this forum. I was first diagnosed with CH back in 2009 after numerous CT scans, MRI's, and xrays, and also expensive doctors bills. I am 32 years old and feel like I am 100 sometimes. I have been taking verapamil for about two years which does not seem to help much and also imitrex which just gives me the worse abdominal pain but anything is better than that pain. I've also tried oxygen but had to return because of price but  I am considering getting it again. I have been reading this forum and I notice a lot of people's episodes strike in thier sleep, I am a little different my episodes strike more around noon and its a pain in the rear when you teach students for a living!! I am finally glad to find somewhere that I can vent or even just ask questions from someone who I know Knows how it feels.
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bejeeber
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Re: Thank God there are more people like me!!!
Reply #1 - Jun 26th, 2011 at 9:00pm
 
You came to the right place!!

Sounds like you are among the countless legions who have come here who have been prescribed imitrex pills even though the inhaler and injectible forms are much faster and more effective.  Sad

A headache specialist wouldn't likely prescribe the pill form, so that'd be cool if you could get to a specialist.  Cool

When price is an issue with O2, some CH folks just get the same stuff cheaper from their local welding supply place BTW.

More and more folks who have taken verapamil etc. for years with not so great resullts have gotten fed up and tried the clusterbuster approach, only to wish they had done so much earlier. Check out the Newsweek article on clusterbusters if you haven't seen it already:Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register


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« Last Edit: Jun 26th, 2011 at 9:02pm by bejeeber »  

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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Guiseppi
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Re: Thank God there are more people like me!!!
Reply #2 - Jun 26th, 2011 at 11:12pm
 
Welccme to the board. Do look back at oxygen again, as insurance companies are now covering it, it's so much cheaper per abort then most other meds we use.

As Bejeeber said, the imitrex pills are generally worthless for CH. They just take too long to be absorbed and our attacks tend to build fast. Either injectable or nasal is the only way to go.

If verapamil is no longer helping, talk to your doc about adding lithium. Often called the "chronic cocktail" it's worked for some when neither standing alone was providing any relief.

And look at the Clusterbusters site. It's been a tremendous help to many for whom traditional meds just were not hacking it. Welcome to the board. Read like crazy, a knowledgeable CH'er hurts a lot less. Wink

joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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wimsey1
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Re: Thank God there are more people like me!!!
Reply #3 - Jun 27th, 2011 at 8:25am
 
As you can tell from the replies above, we have often heard from others that they have "tried" this or that, and it didn't work...only to discover when we hear the details that what was tried was either in too low a dose to have any real effect, or was not given with proper equipment or advice on technique, like O2, or imitrex injections rather than pills.  Please let us know what specifically was tried, in what measure and how. You are looking for an abortive, an intermediate while the preventative takes effect, and a longer term preventative. There are a lot of options out there but almost all require Rx. Once you have a handle on what you are willing to try you need to work with a good headache specialist and start experimenting. Best of luck and God bless. lance
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