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Topic: Finally Registered/Posting (Read 292 times) |
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KanKan
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Finally Registered/Posting
« on: Aug 24th, 2004, 7:31pm » |
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Well first let me start off by saying, that I have read these forums for about 2 years now, but just standing by reading the useful information that everyone here posts. I guess I will start by talking about me, in hopes of actually having ppl to talk back, without just "reading" these forums.
I am 26, married, with 2 kids. I started getting CH back in 2000, not knowing any clue of what it was. I was in the Air Force at the time, and didn't really take the time to go to my flight doctor, so I had always assumed that since I was in hot climate areas, i just had a really bad problem with hydrating, and was chugging water in hopes to sleep a whole night. Finally, after living with my wife, she would not let it go on. She called the doctor during one of my attacks ( i do not let anyone be in the same room as me during ), and made an appointment. After my doc trying to give me Maxalt, which had absolutely no "positive" effect on me, he reffered me to my Neurologist. The neurologist was very responsive of my pain, and wanted to do everything he could to help..... After I got a catscan, even though he said he was 100% positive of my pain. Well, about 2 days after I seen him, my cycle ended, and being the lazy person I am, i put it off, and put it off. After reading some ppls posts, I feel thankful that I only get them when I do. Well, that was about 8 months ago, and I had actually thought that I had beaten the devil we know as "CH"s, since my usual time between cycles was 3-4 months with, and 1-2 months without. It was about 2 weeks ago, I awoke with such a familar tighness in my neck, and slight pain in my eye, which turned in to one of the worst wake up calls of my life, the welcoming back of Clusters.
IF you are still reading, thank you, since I tend to make a long story longer. Ok. So after about 5 days of sleeping 1-2 hours a night, with about 2-3 episodes a night, I called my doctor. He informed me that my refferal was no longer active in my Insurance company, and that he needed to see me before he can refer me again, even knowing that its about CH's.
My apt time is tomorrow morning with my GP, and I am not sure how its gona turn out. I am thinking if he does refer me, that he better think of something to put me on, since it takes 2-3 weeks to get in to the neurologist (I am a really bad speller). I guess I will have to make sure that he knows how much life really sucks with these, and that I better have his full attention on what to do in the time it takes to get in. Ok. Im done. Those who have read this all deserve a pat on the back.
BTW - i am Brian
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Pain
People Think they know Pain
They know so little.
How can you explain Pain.
Its an Emptyness, A Hatred and Loss.
Its InDescribable.
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BobG
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Re: Finally Registered/Posting
« Reply #1 on: Aug 24th, 2004, 7:41pm » |
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Hey Brian, welcome. Glad you finally came in instead of just looking through the window.
Since you've been reading for 2 years now I assume that you already know about the information under the buttons on the left side of your screen.
You have until tomorrow morning to print the information and take it with you to the GP.
I'm done.
What are you waiting for?
Get the printer going..............now! 
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Stay stressed. Never relax. Never sleep. Ever.
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KanKan
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Re: Finally Registered/Posting
« Reply #2 on: Aug 24th, 2004, 7:45pm » |
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Usually when I read this, its when im trying to fend off a shadow or I just finished an attack, and need to relax before heading back to bed. I am not familiar with the buttons your talken about tho 
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Pain
People Think they know Pain
They know so little.
How can you explain Pain.
Its an Emptyness, A Hatred and Loss.
Its InDescribable.
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IndianaJohn
New Board Hall of Famer
Into the jaws of the Beast we ride!
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Re: Finally Registered/Posting
« Reply #3 on: Aug 24th, 2004, 8:25pm » |
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Hi Brian,
So glad you finally came in, so sorry that you have to...
The links to the left are what BobG was refering to. They contain some very good information. You might want to try to get some verapamil with a prednisone taper. That combination appears to help many of us. I am currently on them and the prednisone does make a difference, but you can't stay on it forever. Also a abortive medication should help. I personally use Imitrex nasal spray, others prefer the injections. My own GP, though well meaning is very uninformed about CH. I couldn't even get a script for O2 from him, so my appointment with a neuro is on the 31st.
I would suggest printing out the information on the oxygen and medical information found in the links to the left and bring it to your GP and neuro. That's what I am doing, so it might work for you. I have only found one physician in my life that actually new what CH was and how to treat it. And she wasn't a neuro, unfortunatley she retired, so I'm searching again.
Best of luck and I hope this has helped.
John
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Did my brains fall out or is this headache over?
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BobG
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Re: Finally Registered/Posting
« Reply #4 on: Aug 24th, 2004, 8:34pm » |
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Quote:
John...speaking of the buttons, click on the OUCH website, then click the Cluster Help button. You might find a doctor there.
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Stay stressed. Never relax. Never sleep. Ever.
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KanKan
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Re: Finally Registered/Posting
« Reply #5 on: Aug 24th, 2004, 8:43pm » |
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Thank you both for your help
Last time they mentioned the nasal spray, but then told me that they thought it was too addictive to prescribe to me. If they say that tomorrow, I will let them know EXACTLY how they make me feel, perhaps a demonstration with a hammer? J/K
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Pain
People Think they know Pain
They know so little.
How can you explain Pain.
Its an Emptyness, A Hatred and Loss.
Its InDescribable.
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IndianaJohn
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Into the jaws of the Beast we ride!
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Re: Finally Registered/Posting
« Reply #6 on: Aug 24th, 2004, 8:53pm » |
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Shit! The neuro I have an appoinment with isn't on it!
Imitrex addictive? I have NEVER experienced that and I have used it for years as an abortive. Cost to damn much to be addictive...
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Did my brains fall out or is this headache over?
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KanKan
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Re: Finally Registered/Posting
« Reply #7 on: Aug 24th, 2004, 9:33pm » |
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Not covered, or just too expensive with coverage??
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IP Logged |
Pain
People Think they know Pain
They know so little.
How can you explain Pain.
Its an Emptyness, A Hatred and Loss.
Its InDescribable.
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IndianaJohn
New Board Hall of Famer
Into the jaws of the Beast we ride!
Gender:
Posts: 643
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Re: Finally Registered/Posting
« Reply #8 on: Aug 24th, 2004, 9:46pm » |
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A box of 6 runs me about $42... with insurance
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Did my brains fall out or is this headache over?
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KanKan
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Re: Finally Registered/Posting
« Reply #9 on: Aug 24th, 2004, 10:49pm » |
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How many uses does one Hold??? dont say just one lol
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Pain
People Think they know Pain
They know so little.
How can you explain Pain.
Its an Emptyness, A Hatred and Loss.
Its InDescribable.
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KanKan
New Board Newbie
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Posts: 32
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Re: Finally Registered/Posting
« Reply #10 on: Aug 25th, 2004, 8:43pm » |
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--- update--
Well, went to my GP, and it went as I hoped it wouldn't, but as I expected. He had very little knowledge of what cluster headaches were, and refered me to my Neurologist again. He informed me of the medicine he had put me on to try last time, which was *sp* - Depakote and Naproxin (with Maxalt on side). Well, since none of them worked last cycle, he decided to try me with Metoprolol (Lopressor). I have very little faith in this meta blocker, but I will try it none the less. God that neuro better get me in quick. Fell asleep on couch for 10 mins after work, and earned 2 hours of pain afterwards, such a nice reward.
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Pain
People Think they know Pain
They know so little.
How can you explain Pain.
Its an Emptyness, A Hatred and Loss.
Its InDescribable.
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thebbz
CH.com Alumnus
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Ow,Ow,Ow
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Re: Finally Registered/Posting
« Reply #11 on: Aug 25th, 2004, 9:04pm » |
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Thats seems typical to me , I have read over and over how GP's start a drug therapy, it's so clinical it stink's, your doc is starting you on the least evasive drugs and guinea piggin ya. That is just my opinion. The same crap over and over. Hope the neuro can get to you soon. Good luck
BB
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It wasn't me I didn't do it
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Kris_in_SJ
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There's no place like home.
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Re: Finally Registered/Posting
« Reply #12 on: Aug 25th, 2004, 9:10pm » |
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Hi,
Glad you found us. Here's the best article ever on drug treatment and clusters (thanks Gator). I took this print out to my GP when my most recent cycle started. He's a believer now! (my browser is a little funky, so if this doesn't show up as a link, copy/paste it.)
http://www.future_drugs/admin/articlefile/ERN020304.PDF
Good luck. Sending many hugs,
Kris
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I'm a small woman in small town being chased by a VERY BIG BEAST!
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vig
CH.com Alumnus
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CHit Happens
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Re: Finally Registered/Posting
« Reply #14 on: Aug 25th, 2004, 9:11pm » |
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on Aug 24th, 2004, 10:49pm, KanKan wrote:| How many uses does one Hold??? dont say just one lol |
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3 if you split them...
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never, Never, NEVER quit. -Winston Churchill
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Redrum
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Doh!
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Re: Finally Registered/Posting
« Reply #16 on: Aug 26th, 2004, 10:02am » |
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Welcome KK, my advice: Oxygen, No Naps!, and don't take shit from the Doctors educate them yourself or find another.
PFDAN to all!
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It's hard to be an optimist when the glass is shattered on the floor!
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eddie
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PFDAN TO ALL
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Re: Finally Registered/Posting
« Reply #17 on: Aug 26th, 2004, 10:23am » |
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walk in with info
some dont like it but know what you want say
before you get there it helps
o2 works great but if you have it bad
you need other meds dont give up
and good luck and inform yourself
from this site it has info in bundles
not all docs are informed even neuros
my gp help me i have been chronic
for 18 to 20 yrs and im just now getting
some relief. its not thru with me i know
GOOD LUCK ED
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PFDAN TO ALL>><< http://www.putfile.com/ededearl>>><music> http://www.myspace.com/pamneddie
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