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peter K
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New to Board
« on: May 11th, 2004, 4:26pm » |
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Hi all
Clusterhead for 8 years now, started at 29 years old. Beast is here with me now. Get then twice a year,6-8 weeks a time. What can I say that you all know by now. Tried many drugs with little results. My pleasure now is topamax, verap. and imitrex nasal spray. So far, this is the best combo but still looking for better. Neur. won't give me oxygen due to me smoking but will try to convince her at next appt. Been trying to quit smoking hopefully that might change her mind.(Been on the patch for a couple of weeks) My company switched insurance company(have Tufts now) they are only giving me 6 sprays for 30 days(they said no one has that many headaches in one month) I need 1 to 2 sprays a day. I had no problems with Harvard Pilgram. My Dr. is writing a letter to them hopefully I hear from them soon. I can not afford to pay from them myself. For the first time on Saturday, I actually cried the pain was so bad I could not take it. Well my new friends, take care and wish us all luck for something to look forward to
Peter
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echo
CH.com Alumnus
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Chronic and still alive --- I Win!
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Re: New to Board
« Reply #1 on: May 11th, 2004, 4:37pm » |
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Welcome to the MB. Sorry that you needed to search us out. Hopefully the letter from the doctor will convince the ins company that you do need a larger allotment of meds to deal with the beast.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
Proud Dad of a US Marine, and a former Marine turned Police Officer.
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katethecelt
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Re: New to Board
« Reply #2 on: May 11th, 2004, 9:55pm » |
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Hi Peter,
Make sure to read all the info from the buttons on the right. I printed it out and read as I had time. I also took a copy of most of it to my doc.
I hope you share your experiences and wisdom of dealing with CH.
Sending good, pain free vibes,
Kate
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Charlie
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Happy to be here
   
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Re: New to Board
« Reply #3 on: May 12th, 2004, 6:28pm » |
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Welcome aboard and you will find lots of support and ideas for dealing with this horror.
Your neurologist won't let you have O2 because of tobacco? That's idiotic. He assumes you're an idiot about handling the stuff I guess. I'm not one of them but the thing is, there are more smokers here than anywhere I've been and lots of O2 cosumed. I hope you find a way.
Let us know how you're doing.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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buckeyescooter
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Screw Fear!
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Re: New to Board
« Reply #4 on: May 14th, 2004, 1:47am » |
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First off....Welcome!
Second...I agree with Charlie about the o2 thing. That's the dumbest goddamn thing I've ever heard. I've had several Neuro's say quitting smoking while actively in a cycle could actually make the ha's worse. Don't get me wrong, I'm not advocating smoking, even though I do it. I just don't think you need to be punished by your neuro for doing it. Hopefully you can convey this to her. O2 has been a lifesaver for a lot of people on this site
Stay in touch.............. 
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Clusterheads are a rare breed.
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Woobie
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I luv you guys!!!!!!!!
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Re: New to Board
« Reply #5 on: May 14th, 2004, 9:59am » |
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UMmmmmmmmmmm
GET SOME 02 - dont take no for an answer. You dont smoke around it - geesh!
And welcome to the board!
tina 
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TxBasslady
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Bass fishin' is a h00t It's the catchin' that sux
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Re: New to Board
« Reply #6 on: May 16th, 2004, 11:13pm » |
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Welcome to the board, PK
Have to agree with the above post's.....don't take no for an answer.
You know....you can also use welder's 02. You just need the right mask....and a regulator that goes to about 12 or 15ml.
Sorry you're having to deal with the beast. Hope you get some rest and a lot of PF time.
PF vibes,
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas! 
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Gator
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Re: New to Board
« Reply #7 on: May 18th, 2004, 1:54pm » |
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Welcome to the website. I hope your insurance company will cave with the letter from the doc. My insurance company was only gonna give me 6 Zomig Nasal Sprays a month until my neuro wrote them a "Letter of Medical Necessity." Now I get 30 per month. Good luck on that.
As far as the O2 thing, that is ridiculous. O2 is a very effective tool in fighting the beast.
Wishing you Pain Free Days and Nights (PFDAN)
Gator
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