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freeordie
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I love YaBB 1G - SP1!
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should have joined you during last cycle in 2004, but it ended and never did...new current cycle inspired me again! yea.
don't know how long i've had CH's but at least since 1995. misdiagnosed as allergies, blocked sinus (had endoscopy in 2000), and migraines. have tried very few HA meds consistently. Zomig a couple times, and pill form Imitrex once. current new doctor has given me Axert, mostly effective about 20% of the time. i used to take sinus meds but it would just delay the CH and then come much more intense.
HA's my whole life of various types, but have recognized CH pattern distinctive from others. generally: 3-6 week cycles, once/year in late spring, 2am most common/most intense. Current cycle Kip 7, in the past to 9. currently typing from work at 5pm with shadow, probably headed for 9pm hit tonite.
having trouble coming to grips with the possiblity that i need to use anything non-natural and regularly to manage this.
oxygen sounds like its worth looking at seriously.
any feedback on ergotamine aerosols?
anyone recommend doctor north of Boston/southern NH?
FYI the screen name is just the NH state motto, not indicative of my state of mind re: CH (no Kip10's)!
thank you
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Guiseppi
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Re: first post
« Reply #1 on: Jul 24th, 2007, 6:13pm » |
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Oxygen should definitely be your first line abortive, for me it will abort a headache in less then 10 minutes. I've never used ergotamine aeresols, I tried the dissolve under your toungue ergotamine in the 80's but it didn't help at all.
I now use cafergot with my oxygen. If I use only the oxygen the headache comes back 20 minutes after I shut off the 02. Now when the tingle starts I pop a cafergot....it's ergotamine and caffeine...and fire off the 02. 02 knoecks it down and the cafergot buys me about 12 hours.
I know you're not wild about meds but lithium, at 1200 mg a day, has proven an awesome prevent for me. My cycles are 8-12 weeks 2X a year. Lithium will block 80% of my headaches, the cafergot and 02 handle most of the rest, on rare occasions I rsort to imitrex jabs.
Welcome to the board, you have lots of reading to do!!!!
Guiseppi
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Rosybabe
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"Too much of a good thing can be wonderful!!
 
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Re: first post
« Reply #2 on: Jul 24th, 2007, 7:50pm » |
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Welcome aboard Freeordie!!
To find a Doctor in your area you can check O.U.C.H.
http://www.ouch-us.org/chgeneral/doctors.htm
Good Luck and please stay with us, We like to know how you are doing.
Pain Free wishes for you!
Rosy.
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GrandPotentate
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mmmmmmmmmm
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Re: first post
« Reply #3 on: Jul 24th, 2007, 8:54pm » |
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Glad you found the site; sorry you had to come looking.
You're story sounds familiar. I thought I was a goner on my first hit, then it quit as suddenly (what was that?!). Then more hits. Had sinus checked, got prescription glasses, had all my wisdom teeth yanked, had all kinds of migraine dope. It took awhile before I got diagnosed. My old GP said give O2 a try and what a differenence. As natural as you can get, and relatively low-risk. Read up on it. I hope it works for you as well.
I've got no experience with any effective meds, just a long list of ones that didn't do squat.
BTW, I found myself in NH for the first time in my life last week and got to rent a car with that awesome motto on the plate. It certainly is better than "wander".
PF wishes
Jon
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Jon
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freeordie
New Board Newbie
I love YaBB 1G - SP1!
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Re: first post
« Reply #4 on: Jul 26th, 2007, 1:09pm » |
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thanks for the encouragement and advice.
PF on TU! not so last night - Kip8, 3 hours.
i do a lot of deep breathing!
in the meantime i discovered my recent tooth pain, which i attributed to side effect of CHs, turns out to be an old root canal blowing up...so i got some vicodin, doubled up the dose last night for my teeth, and the CH comes along an hour later as if the vicodin is not even there. unbelievable. plus vicodin makes me a zombie.
heading to doc tomorrow morning and will pursue a referral (thanks for the OUCH url) to the guy in Concord NH, ask for O2, and inquire about ergot options. also started my first HA diary this cycle.
lithium just brings so many bad perceptions to my mind, will start with O2 and not rule anything out yet
cannot imagine how you chronic CH's deal!!!
will keep reading, coming back, and posting.
thx again.
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lionsound
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breathe
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Re: first post
« Reply #5 on: Jul 26th, 2007, 1:21pm » |
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Howdy Neighbor!
I live in Maine.
I beileive there is a Headache center at Dartnmouth Hitchcock.The doc's name escapes me at the moment. Boston may be closer to you though.
I go to New Engand Center for Headache in Connecticut because I got tired of neurologist fishing. I live 5 hours from there, but it's worth it.
Be well and PF!
-lionsound
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Guiseppi
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Re: first post
« Reply #6 on: Jul 26th, 2007, 1:35pm » |
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Oh make no mistake, when you're on lithium you don't tell ANYBODY!!!!! Otherwise they all start talking REAL softly round you and look at you funny. On the plus side, when you go to the nurses clinic for your blood draws, when you tell them it's to check your lithium levels, they move you to the front of the line, (still talking REAL softly), you're in and out real fast!!!!
I'm in law enforcement and carry a gun. The only side effects for me are I pee a lot the first 2 weeks or so, it is a salt after all, and I feel a little lethargic. Nothing upping the coffee can't handle. As with everything else involved in this condition you pick your poison!!!! Good luck with the neuro search and hoping you have a short cycle!
Guiseppi
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DennisM1045
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Re: first post
« Reply #7 on: Jul 27th, 2007, 6:58am » |
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Hi and welcome. I'm not far from you and I've been seeing a Neurologist in Lawrence MA. He's up on CH and has helped me. We tried Gabapentin (Neurontin) + Verapamil for prevents and he perscribed O2 + Imetrix injections for abortives on my first visit. I couldn't stay with the Gabapentin, made me too fuzy so I had to drop that. PM me if you want contact info. Good luck...
-Dennis-
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freeordie
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I love YaBB 1G - SP1!
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Re: first post
« Reply #8 on: Aug 13th, 2007, 12:07pm » |
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it's been awhile since last checking in due to travel etc.
update:
doc prescribed verapamil daily for preventative (CCB), an anti-inflam for early-warning abortive, and Axert for more serious abortive. also got a referral to head HA specialist/nuerologist at Dartmouth-Hitchcock in Lebanon NH (HQ), Morris Levin - problem there is the appointment is in Jan, 2008! Asked doc about oxygen but he said he'd leave that to the neurolgist.
the meds are working, sort of: at first i followed directions, but for 3-4 nights still had Kip8s. then i started taking the anti-inflam 2x day (meaning I'm effectively on them all day), and taking Axert as preventative before bedtime. since then (Aug 1), I have had only one CH, the only night i did not take Axert. Woke up at 3am, took Axert, no effect, Kip8 until 7.30am.
anyone know Morris Levin, MD?
my current issue is when do I stop taking Axert b4 bed to test whether my episode is over, and/or the CCB is taking effect (can't take Axert daily due to side effects and cost)? still having shadows during the day but sometime I will have to goto bed without protection to check my episode status.
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DennisM1045
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Re: first post
« Reply #9 on: Aug 13th, 2007, 1:21pm » |
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Did your PCP's office schedule the appt? And they accepted January '08? If the answer to these two questions is yes then you need to find a Dr that is going to work for you. 
My next step would be to find a Neurologist that is more available and work the referral back through your PCP. Check links on www.ouch-us.org
Another option is to try calling the Dr's office and plead your case. My Mom lives up in Vermont and uses Dartmouth-Hitchcock. She's had similar scheduling problems. She's also had luck getting someone in the office on the phone and giving them some context for the issue. They might be able to get you in to see one of his associates earlier or get you put on a waiting list for openings.
In short, don't take January '08 for an answer.
I hope you get some PF time soon.
-Dennis-
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