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   What hell have I fallen into?
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   Author  Topic: What hell have I fallen into?  (Read 275 times)
jacjoemax
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What hell have I fallen into?
« on: Jun 14th, 2002, 7:51pm »
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I was just recently diagnosed with cluster headaches. My dr wanted me to try maxalt, prednisone, neurotin and vicodin as needed. I also suffer from migranes on occasion and pressure headaches(psuedotumor). My problem is that when I began other meds for the other conditions, I had severe side effects and am afraid to take anything else. I'm currently just taking Vicodin three x a day. I was interested in more non drug approaches to stop the pain,  how can I get O2? Go to emergency? And if this isn't long enough, where should I begin? I don't know what alot of terms mean that are used on the message boards such as shrooms and shadows....Can someone help?
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Re: What hell have I fallen into?
« Reply #1 on: Jun 14th, 2002, 8:15pm »
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Hi Jacjoemax.  You would be doing yourself a great favor by researching this site and the O.U.C.H. website and most of your questions will be answered.  Here's my best advice (brief summary... do the research):
 
1.  Research this site.
2.  Find a good neurologist who is familiar with treating cluster headaches.  Be persistent.  I have had to fire neurologists who were not knowledgeable enough.
3.  Get a preventative medication if possible, such as verapamil.
4.  Imitrex injections are effective abortive for many.  O2 is very effective for some and worth a try.  (O2 prescription should be for 8-12L/min with non-rebreather face mask... accept no other alternatives to this prescription).
 
Shrooms are psychedelic mushrooms... illegal to possess in most nations... but many clusterheads are finding that they are a very helpful treatment.
 
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Not4Hire
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Re: What hell have I fallen into?
« Reply #2 on: Jun 14th, 2002, 8:21pm »
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Hey jacjoemax....may I call you JJ?.....welcome aboard this ship...and the greeting usually is: sorry you're here...glad you found us.  Your post is a first step to dealing with the beast and you will find that the voyage will have it's ups-and-downs. I applaud your desire to find a non-drug approach...I am one of those who don't use the "menu" to deal with it. I DO use o2 and it has been my steadfast ally.  
 
Read up on ALL of the information on the buttons STAGE LEFT....being informed is the best way to deal with The Dance. To get you started: "shrooms" refers to the use of Psilocybin cubensis or "magic mushrooms" to prevent and sometimes abort clusterheadaches. "Shadows"....well, this is a term that is different for each sufferer....but for me, it's that tap on the shoulder, that black glimpse of an impending headache, the scary feeling I'm about to get "hit". You know what I mean......don't you?
 
You'll probably need a Rx from your doctor for oxygen, but "welding" o2 is a viable alternative. Read up on o2 therapy, follow the directions..and if you have ANY questions....email me at carpe_diem49@yahoo.com. I think we are on the same page as far as "Seizing The Day", no?  
 
Hang in here, JJ and I hope you find your "key"......
 
Best regards....Steve
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jacjoemax
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Re: What hell have I fallen into?
« Reply #3 on: Jun 14th, 2002, 8:35pm »
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Thank you all for your help, I really feel welcome
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Re: What hell have I fallen into?
« Reply #4 on: Jun 16th, 2002, 11:47am »
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Hi J,
 
Vicodin is an addictive pain medicine, I believe.  That's what Green Bay QB Brett Favre was addicted to.  Anyway, pain meds never really did much for mine.  Vicodin wouldn't ever touch them.
 
A good preventative to start with is verapamil, which I had virtually no side effects from.  Like someone else posted, Imitrex is an excellent abortive (has worked every time for me), although it's tough to get enough of it from your insurance company sometimes.  I'd look into getting the oxygen prescription that someone else suggested if you can't get enough imitrex.  
 
You mentioned prednisone and neurontin.  Prednisone worked great for me the first time I ever took it.  Neurontin worked as a preventative for a while, as well.  You just have to keep searching to find the right combination.  Lots of imitrex, if you can get it, sure helps while you're looking.  If you do get Imitrex, try the Imitrex tip that's on the menu on the left side of this page.  It's a LIFE SAVER.  
 
Hope you find something that helps!
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Re: What hell have I fallen into?
« Reply #5 on: Jun 17th, 2002, 11:20am »
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Hay Jac - glad you are seeking out help - you've come to the right place.  I think that most of your questions have been answered above.  It's extremely frustrating in the beginning - trying to deal with a new pain, trying to find the right doc, trying to find the right meds, etc.  Please know that we are all here for you and although we can't take the pain away, we can offer an ear to listen.
 
Good luck to you in your search....
 
NotH20
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