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Topic: Greatful new guy. (Read 277 times) |
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greatwhiteshark
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Greatful new guy.
« on: Jun 14th, 2007, 12:42pm » |
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Hi everyone, I posted for the first time yesturday,(prob in the wrong spot,, i'm not really computer savey)
I'm a 43 year old male who has been a cluster victim for 20 yrs. Up untill 3 weeks ago I have been in remission for two great years.
Before I heard the terms, I had described the pain as a rat eating throgh my eye and into my brain,, the shadows were the rat nosing around. I had thought I outgrew the clusters, but no chance,, after 2 pf years the rat came back more p.o ed than ever.
I know you guys feel my pain, (the few in the world that do) and it gives me strength to carry on. I have spent a lot of time on this site, and have learned a lot. Now if I can get in to see a nuerologist asap, i'll be laughing,, (not really). Thank you guys again for all the support, and info.
Darren
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Wayne
New Board Old Timer
RedBull Rules!!
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Re: Greatful new guy.
« Reply #1 on: Jun 14th, 2007, 1:49pm » |
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Howzit Darren
You are indeed in the right place mate, there is so much info here. I'm also new to the board and I really feel empowered from the knowledge gained here.
Sorry you have to be here but welcome anyway.
Cheers,
Wayne
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A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort.
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thebbz
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Ow,Ow,Ow
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Re: Greatful new guy.
« Reply #2 on: Jun 14th, 2007, 6:57pm » |
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Welcome and stick around. Be grateful....help someone else.
all the best and hope to hear more from you.
Kick demon a$$
jb
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It wasn't me I didn't do it
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Linda_Howell
CH.com Alumnus
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Hearing is one thing. Listening is another.
  
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Re: Greatful new guy.
« Reply #3 on: Jun 14th, 2007, 8:30pm » |
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Hi Darren,
Yes, we feel your pain but we are all here to help you any way we can too. You said you need to get into a Neurologist? Do you have a primary care Doc? If you do, he can prescribe 02 or any other abortives that are appropriate. You don't need a pricey Specialist to do that.
Let us know how we can help you. We have several Cannucks here that we have come to love. Happy to add you into that catagory. 
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Ray
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Ray and Shade
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Re: Greatful new guy.
« Reply #4 on: Jun 14th, 2007, 9:09pm » |
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Welcome, read, learn, and ask away!
Ray
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You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
http://www.myspace.com/rayplace
http://www.shadesgarden.com
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greatwhiteshark
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Re: Greatful new guy.
« Reply #5 on: Jun 15th, 2007, 2:16pm » |
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Hi Linda and everyone, my family dr is working on the oxygen, hopefully it will happen next week. She hasnt been real helpfull about other meds,, I had a list of meds I wanted to try, and she thought my blood pressure want good enough..
She did perscribe lidocaine, but after reading a lot on this great site, I havnt got it filled yet. I'm on the last few days of prednisone, and I'm starting to feel the beast coming back. Does lidocaine work?
Thanks for the support
Darren
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LeLimey
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OUCH-US - Less "ME" and more "WE"
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Re: Greatful new guy.
« Reply #6 on: Jun 15th, 2007, 2:23pm » |
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Darren taking Pred without having another preventative building up in the background is like sitting on a rice paper raft in shark infested waters - when it melts you're gonna get eaten!
Pred is a brilliant stop gap - taking it for 2-3 weeks while building up on another med such a verapamil for instance gives you a pain break that the other drugs can then carry on from (verap is probably THE front line defence against CH) Taking it without anything to back it up means at best, you get a couple of weeks pain free and then you get walloped again.
Pred is a nasty old drug and you really shouldn't use it more than once or twice a year at most as it knackers the rest of your body so when I hear of people being given it without a backup or without having it explained to them properly I'm ready to bang my head against the wall without even being in a hit!
We will help you hon, ask all the questions you want, read as much as you can and tell us about any other meds you've tried in the past and if they helped even if they stopped working. That way we have a better grounding for suggestiong things you can talk over with your docs.
Hang in there, we'll help!
Helen
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greatwhiteshark
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Re: Greatful new guy.
« Reply #8 on: Jun 15th, 2007, 6:19pm » |
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Thank you Helen and JB,
Your right,, my rice paper raft has a few holes in it. I cant make it to a dr untill tomorrow, i'll go first thing.
Some of the meds i've tried with not much success is imatrex nasal spray, and pill, zomig nasal spray, sansert, ,,,and thats about it, (besides pain killers which dont work).
I'm going to insist she try something,( verapamil, or topamax, ) I can see myself in trouble in a few days. I cant go into battle unarmed. And hopfully the oxygen by next week
Darren
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greatwhiteshark
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Re: Greatful new guy.
« Reply #9 on: Jun 15th, 2007, 6:21pm » |
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Thank you Helen and JB,
Your right,, my rice paper raft has a few holes in it. I cant make it to a dr untill tomorrow, i'll go first thing.
Some of the meds i've tried with not much success is imatrex nasal spray, and pill, zomig nasal spray, sansert, ,,,and thats about it, (besides pain killers which dont work).
I'm going to insist she try something,( verapamil, or topamax, ) I can see myself in trouble in a few days. I cant go into battle unarmed. And hopfully the oxygen by next week
Darren
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thebbz
CH.com Alumnus
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Ow,Ow,Ow
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Re: Greatful new guy.
« Reply #10 on: Jun 15th, 2007, 8:27pm » |
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Try the imitrex injections they work much better than the pills or spray.
Keep up the good fight
jb
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It wasn't me I didn't do it
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