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Topic: Recently diagnosed w/ CH (Read 289 times) |
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Bond007
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Recently diagnosed w/ CH
« on: Jul 27th, 2006, 10:56am » |
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I finally got into see a neurologist on 7/12 and he did indeed diagnose me with CH. By the time I'd gotten in to see him, my headaches had gotten more severe and started waking me from my sleep.
For right now, he's increased my dosage of Topamax to 200 mg a day, added Elavil at 50 mg a day, and he's given me a script for Stadol NS for pain relief. I really hate the Stadol. I don't like how it makes me feel.
I go back to see him in 2 months to see how this regimen is working. If it's not helping, then he had discussed trying steroids like Lithium or Verapamil along with Imitrex. He also suggested O2, but he says that there aren't any conclusive studies that show any positive results of O2 therapy when compared with a placebo so most insurance companies won't pay for that kind of treatment.
I will say this. After increasing the Topamax, I did see a marked improvement within a week and I was completely painfree on the 8th day. Now, I don't know if my cycle was ending or if the drug was working. Then, again, I was also on vacation in Walt Disney World at the time. The headaches returned on the 2nd leg of the flight as the captain depressurized the cabin on the approach into Little Rock this past Sunday and I've been dealing with bouts of CH's ever since. ARGH!
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Sometimes life bites you in the ass -- that's what drugs are for!!
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TxBasslady
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Re: Recently diagnosed w/ CH
« Reply #1 on: Jul 27th, 2006, 1:21pm » |
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Welcome to the board, Bond 
O2 Therapy does work....and insurance co's will/do pay for this.
I use Excedrin Migraine before I board a plane. It seems to work for me.
Good luck with your doc...let us know how you're doing.
PF vibes,
Jean
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lionsound
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Re: Recently diagnosed w/ CH
« Reply #2 on: Jul 27th, 2006, 2:03pm » |
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on Jul 27th, 2006, 10:56am, Bond007 wrote: He also suggested O2, but he says that there aren't any conclusive studies that show any positive results of O2 therapy when compared with a placebo so most insurance companies won't pay for that kind of treatment.
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Your neuro is a lazy, uninformed dough-head. LOTS of studies on O2 and insurance companies will pay for it. IT WORKS!!!
And stadol can be very addicitve so please be careful. Not the best first line abortive drug. Imitrex and/or other triptans work better...so does O2.
If possible I would suggest a new neuro or bring him some of the info from this site and ask him to update himself. You deserve better care!
PLease be well and PF,
lionsound
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Bond007
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Re: Recently diagnosed w/ CH
« Reply #3 on: Jul 27th, 2006, 3:11pm » |
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He did say that many CH sufferers will swear that O2 therapy works for them, but he hadn't found any conclusive studies on the subject. Does anyone here know where I can find any studies that will prove O2 therapy works? I'd really like to take something back to him when I see him in September. Please don't get me wrong. He's not against it. It's just been his experience with insurance carriers with his other patients that there's been problems with coverage. He is willing to work with me and try anything that will work for my headaches. Also, in the meantime, I do plan on discussing coverage of O2 with my insurance carrier to see what my options are. Does O2 work for most everyone?
As for the Stadol, my neuro did warn me excessively of the risks. He told me precisely how long he expects my current prescription to last and if he even gets a whiff that I'm abusing, he'll yank me off it without thinking twice about it. Also, he did state that this is only as an intermediate drug until we find the combo of meds that I can use for prevention, abortion, and pain relief. He doesn't expect the Stadol to be used indefinitely.
I really want to gather as much information from here as I can so that I can be as prepared as possible when I see my doc next time.
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LeLimey
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Re: Recently diagnosed w/ CH
« Reply #4 on: Jul 27th, 2006, 3:24pm » |
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Ask him to contact Professor Goadsby at the Institute of Neurology in London. He has just completed the most exhaustive and comprehensive research into O2 therapy for cluster headaches ever undertaken and the results are phenomenal. PG is one of the worlds foremost experts on CH, his data is sound
Good luck! Where are you btw? Weren't you in Europe before?
Helen
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Bond007
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Re: Recently diagnosed w/ CH
« Reply #5 on: Jul 27th, 2006, 3:33pm » |
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I live in Heber Springs, AR, about an hour due north of Little Rock. Never lived in Europe. Spent a week touring Germany, Austria, Switzerland & Lichtenstein one year, though, but that really doesn't count.....
I'll definitely have him look into Goadsby's research on O2 therapy.
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LeLimey
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Re: Recently diagnosed w/ CH
« Reply #6 on: Jul 27th, 2006, 3:41pm » |
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Wrong "Bond" 
I was talking to someone on here a while back who was living in Europe with a similar handle to yours so I'm sorry for confusing you
If you need any help getting info just ask okay?
Helen
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Bond007
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Re: Recently diagnosed w/ CH
« Reply #7 on: Jul 27th, 2006, 3:43pm » |
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No prob, Helen!
I'm usually pretty vocal!!! 
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marlinsfan
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Re: Recently diagnosed w/ CH
« Reply #8 on: Jul 27th, 2006, 4:33pm » |
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Hey Bond, this document is not a study, but it's regarded as a good one to know as it has info on all the right meds for CH, including O2 of course.
http://www.brightok.net/~mnjday/chtherapy.pdf
Your doc's job is to give you scripts for stuff that works. If insurance covers it or not should not be a factor in his prescribing it to you, cause you can always decide to pay for it yourself. Many here do have their own O2 tanks and fill it up with welder's oxygen.
Fight for your O2. It's saved my sanity, and probably my heart as I haven't needed trex since I found O2.
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| « Last Edit: Jul 27th, 2006, 4:36pm by marlinsfan » |
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Bond007
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Re: Recently diagnosed w/ CH
« Reply #9 on: Jul 27th, 2006, 5:49pm » |
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That's a great article with some really good reference materials, marilsfan! Thanks for bringing it to my attention.
And, sometimes I can be so damn dense!!! Welder's oxygen, huh? My family owns a metal stamping and fabrication company and one of our specialties is welding, not to mention we cut steel with lasers that require oxygen to create the laser beam. We've got a bulk oxygen tank on our property. DUH!
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marlinsfan
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Re: Recently diagnosed w/ CH
« Reply #10 on: Jul 27th, 2006, 8:51pm » |
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All you need then is a non-rebreather mask. The best one can be found here:
http://www.clustermasx.com
Good luck!
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Bond007
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Re: Recently diagnosed w/ CH
« Reply #11 on: Jul 31st, 2006, 9:47am » |
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on Jul 27th, 2006, 3:24pm, LeLimey wrote:| Ask him to contact Professor Goadsby at the Institute of Neurology in London. He has just completed the most exhaustive and comprehensive research into O2 therapy for cluster headaches ever undertaken and the results are phenomenal. PG is one of the worlds foremost experts on CH, his data is sound |
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I sent an email to Professor Goadsby in London which read:
"Dear Sir:
I have recently been diagnosed with Cluster Headache Syndrome. The cycle I am currently in started in mid-March and I haven't had more than 4 pain free days in a row since. I just saw a neurologist for the first time on 7/12/06 and that's when he diagnosed me with CH. He had mentioned O2 therapy, but he also said that he hadn't read any concrete studies that supported its efficacy when compared to a placebo. I've read many of your articles and some fellow CH sufferers advised me that if anyone would have the science on O2 therapy, you would. Do you have any studies proving O2 therapy does indeed work? Or, can you at least point me and my doctor in the right direction?
Any help or assistance you could provide would be greatly appreciated. I know you must a very busy man and you probably get bombarded with emails."
His response was:
"I am not in a position to provide a response
There is little published"
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starlight
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Re: Recently diagnosed w/ CH
« Reply #12 on: Jul 31st, 2006, 11:02am » |
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O2 works and it is what saved my ass. My insurance does not pay for it. I pay $150 a month for unlimited refills. If you have to pay for it it is still worth it. Believe me--it's worth it.
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starlight
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Re: Recently diagnosed w/ CH
« Reply #13 on: Jul 31st, 2006, 11:03am » |
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Ask your primary care physician to give you a prescription if your neuro won't. Or switch neuros. You might have to go through one or two people but you will get it.
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starlight
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Re: Recently diagnosed w/ CH
« Reply #14 on: Jul 31st, 2006, 11:05am » |
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O2 works and it is what saved my ass. My insurance does not pay for it. I pay $150 a month for unlimited refills. If you have to pay for it it is still worth it. Believe me--it's worth it.
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Bond007
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Re: Recently diagnosed w/ CH
« Reply #15 on: Jul 31st, 2006, 12:19pm » |
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I'm sure my neuro will give me a script if I asked for it. He's only trying to be "cost conscious", knowing him. This may have been my first visit with him, but my first experience with him. He's been my wife's neuro for almost a year a now, hence the reason why I wanted to see him. I already knew him and we'd already built a relationship. My wife and I had always gone together for her visits so I got to know him as well.
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Bond007
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Re: Recently diagnosed w/ CH
« Reply #17 on: Jul 31st, 2006, 2:36pm » |
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Called the insurance company and they said all I need from the neuro is a letter of medical need and as long it's approved, the O2 would be covered at 80/20 after my deductible under the durable medical goods portion of my medical insurance. I'm definitely talking to my neuro about O2 therapy when I see him in September. The Topamax and Elavil combo he's trying just isn't doing the trick. Yeah, the intensity has trailed off, but I only got a few days break from the frequency and duration.
I'm begining to think the only reason I haven't been waking up with these damn things earlier than I did was because of the Lunesta or Mirtzapine I would take at bedtime. Now, that I've discontinued both of those, I am waking up most nights @ midnight with an attack.
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chopmyheadoff
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Re: Recently diagnosed w/ CH
« Reply #18 on: Aug 2nd, 2006, 9:29am » |
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i cant believe that response from prof goadsby !! 
he didnt sound helpful at all, im supposed to be going to see him soon aswell !!!
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seasonalboomer
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Re: Recently diagnosed w/ CH
« Reply #19 on: Aug 2nd, 2006, 9:39am » |
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on Aug 2nd, 2006, 9:29am, chopmyheadoff wrote:i cant believe that response from prof goadsby !!
he didnt sound helpful at all, im supposed to be going to see him soon aswell !!! |
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I wouldn't read too much in to the shortly worded e-mail response. I'm sure he is quite giving to his own patients. He has certainly done more for the CH community than most - and an opportunity to see him as a patient would be a wonderful opportunity to be in contact with someone who truly knows the syndrome.
Scott
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chopmyheadoff
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Re: Recently diagnosed w/ CH
« Reply #20 on: Aug 2nd, 2006, 9:44am » |
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yes, true i suppose.
and i reckon that if your known as the world renound expert on the subject then your inbox is probly brimming every day !!
i let you all know how my visit goes.
im lucky coz my neurologist rubs shoulders with the prof and is pretty much an expert himself.
but as i am o2 naive the prof wants me to take part in some research. 
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Bond007
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Re: Recently diagnosed w/ CH
« Reply #21 on: Aug 2nd, 2006, 11:42am » |
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Yes, definitely let us know how the visit goes! I honestly didn't expect much of a response since I'm not a patient of his and I'm sure that he gets bombarded with emails.
Best of luck to ya, bro!
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TimJohnson
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Re: Recently diagnosed w/ CH
« Reply #22 on: Aug 2nd, 2006, 11:46pm » |
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What works for me is this:
Topamax that I taper up and down depending if I am in cycel or not. I am always on at least 100 mg. I will go up as high as 400 mg in cycle.
Verpamil - 360 mg that I take everyday regardless if I am in cycle or not
Depakote - that I taper between 500 and 1000 mg in cycle or not. It helps with not waking up at night with headaches at least for me).
Imitrex injections for abortives or tablets depending on severity as well as 02. My insurance will pay for both. I have had to beg borrow and steal for the Imitrex at times, but the O2 was no problem at all. I try to use that before I use any imitrex. If I am travelling for work I make sure to have at least imitrex tablets with me.
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RichardN
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Re: Recently diagnosed w/ CH
« Reply #23 on: Aug 3rd, 2006, 12:37am » |
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O2 is my only abortive . . . can't take Imitrex (high cholesterol and arterie blockage).
You need to use it as soon as you feel the attack coming on (we all know how fast and hard the beast can attack) to stop it in it's tracks. I can kill a Kip 2-3 in five min. or so. If wakened by a Kip 5-6, might take 15-20 min. . . . but I can live with the beast if I don't have to "dance" with the bastard.
Proper mask is VERY important . . .non-rebreather mask (the one with the bag), or Clustermask. At 15 lpm, my regulator will fill the bag on my mask in five seconds, then inhale while squeezing the mask flat and exhale for five seconds (while the bag refills). Since you have welding equip. available, if there's any delay in getting your script just get the correct mask and the hose end will fit neatly over a welding tip end and it would be a simple matter to figure the flo-rate to achieve the above . . .. . and if there were some unexpected delay, Jonny can fix you up with the necessary equipment to adapt to whatever you have available.
Be Safe, PFDANs
(02 lover) Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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