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Cluster Headache Help and Support >> Getting to Know Ya >> hi guys
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Message started by ed d on Sep 22nd, 2012 at 8:33pm

Title: hi guys
Post by ed d on Sep 22nd, 2012 at 8:33pm
Im a 47 yr old male, and have been living with ch since 2002. Originally misdiagnosed and then corrected in 03. I am chronic and though i did recieve a 15 month reprieve, other than 2 0r 3 floaters, they are back with a vengance. its one at 4:30, one at 6:30, 8:15 and the alarm clock. hot coffee, hot shower, imitrex injection and o2 therapy , then pass out from exhaustion. Im shadowing all day and know its immenent and thats stressful at best. Im on my 3rd day of 60mg of prednisone and still no break.I dont know if this is any help as i havent read that many post yet, but if ur doc is nailing you with high doses of imitrex, at least for me, the rebound would take me back into a ch. I went to the Headache  Wellness Center of Greensboro and learned from a Doctor there that although imitrex is used for migrane as well as ch the dosage is much less for the ch. This may seem backwards but for me it was true. I have no ins. and every dime counts. My prescription is for 6ml vials and I take between 0.5 and 1 cc in an insulin syringe at a time depending on how many min. and where my symptoms are. Furthermore the duration of the hypercardio is reduced . This was good news in this sea of bad as i feared stroke out or MI as i get older. I hope this is of some help to some of you folks and be sure to discuss it with your doc. before you change your regiment. Its nice to know your not alone! :)

Title: Re: hi guys
Post by Bob Johnson on Sep 23rd, 2012 at 2:15pm
See the "imitrex tip", left buttons.

If the Pred hasn't worked within one-day it's a good sign of the need to start over again with a higher dose. This is not unusual. Doses up to 100mg/starting is reported in the medical literature.

Are you on a preventive med? (not Pred.)

Suggest you print out the PDF article, below, and use as a tool to discuss your options with the doc. Coming in with some info on your tongue is helpful and just knowing that you have a number of options is useful.

Is this Clinic associated with Moses Cone?
http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=THERAPIES-_Headache_2011.pdf (96 KB | 16 )

Title: Re: hi guys
Post by wimsey1 on Sep 24th, 2012 at 11:31am

ed d wrote on Sep 22nd, 2012 at 8:33pm:
its one at 4:30, one at 6:30, 8:15 and the alarm clock. hot coffee, hot shower, imitrex injection and o2 therapy , then pass out from exhaustion.


I'm not sure I understand what's going on here. O2 therapy? What is that? It sounds as if you are enduring the night hits somehow, then following the above routine hoping the hits won't come back during the day. O2, imitrex, zomig, migranal, DHE 45, etc....these are all abortives and are meant to be used at the first sign of a hit. Are you indeed using the above as a preventative? Verapamil, topamax, depakote, lithium, etc....are better and more effective. Then again, it may just be me and I misunderstood completely. If so, ignore all I've said. God bless. lance

Title: Re: hi guys
Post by ttnolan on Sep 25th, 2012 at 12:42am
I echo Lance's comments:
How have you been instructed to use your meds? It sounds like the right stuff, questioning the usage.
1. Assure us you have read the oxygen info link on the left and are using your oxygen correctly. This is step one in my book.
2. Have you started any of the prevents?

Title: Re: hi guys
Post by ed d on Sep 26th, 2012 at 6:38pm
Im sorry if the terms were a bit evasive. I am use to using o2 therapy as a documentation on call sheet for EMS. I was on verapamil for yrs but got off of it as i seen no true effects. I just had blood drawn for D  levels and am going to try the D3 and fish oil. currently all my methods are for acute attacks and not preventative. TY for the support

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