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Cluster Headache Help and Support >> Getting to Know Ya >> new to the forum http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1329259060 Message started by dennisnpr on Feb 14th, 2012 at 5:37pm |
Title: new to the forum Post by dennisnpr on Feb 14th, 2012 at 5:37pm
Hello everyone, I was recently diagnosed with CH February 9th, of this year. I started getting clusters when I was 18. I am now 37. I would have a bout of episodic headaches that lasted about a month or so, then they would disappear for months or years. I went to the local ER every time I couldn't handle the pain, and each time I was given a different diagnosis. Most recently, I was diagnosed with CH, the Doctor was very familiar with CH and gave me quite a bit of information regarding them. I was prescribed Imitrex and Midrin, which worked initially now it seems the headaches, becoming more frequent, throughout the day, do not respond to the medication as well. So needless to say I am on a quest for finding relief from these totally debilitating headaches. I work as a painter in the day, and go to school online at night. I have three kids here as well. It seems like the quality of my life is being greatly effected by these awful headaches. I am scared to go anywhere without my meds. Hopefully this cycle will end and i can go back to my normal life. :-/
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Title: Re: new to the forum Post by RichardN on Feb 15th, 2012 at 2:35pm
Hello Dennis & Welcome to Clusterville
You've landed in the right place for info/caring/sharing re CH. I'm a "head trauma" CHer. Hit my noggin 1/01, headaches started. By the time my wife found this site for me (2/02), was having 6-8 attacks daily, sometimes 3-5 at night, most Kip 5-9, 20-45 min and the occasional 1 1/2 - 2 hr+ horror. This place gave me the info to take to my doc and get started on having some control of this beast of ours. Ditto what Joe and bb posted. DEFINITELY get a script for 02 (most insurance won't cover, but 02 is cheap even if you have to pay cash - - - I pay $10 per "E" tank). Proper mask is essential. If used at the onset of attack, you can abort in minutes and avoid the "dance". By all means try the energy drinks (I like Rock Star orange). The combo of 02, Rock Star, and ice pack (some like heat) almost always aborted within minutes. I am VERY happy to report that I have been PF for three months . . . my (empty) 02 tanks are getting dusty. I'm giving credit for this to the D3 regimen ("123 days PF and counting . . .") Batch posted on the Meds/Treatments/Therapies board. The beast has been a constant companion for 11 years . . . I'm NOT missing him. Keep reading, keep asking . . . the answers/replies you will get here come from folks who truly know your pain. Be Safe, PFDANs Richard |
Title: Re: new to the forum Post by thebbz on Feb 15th, 2012 at 9:09pm
Yea Richard....you rock, now you can drink beer and smoke pot...he.he.he ;D ;D ;D ;D J/k...I am so happy for you.May it last as long as you were in pain., [smiley=headbanger.gif] [smiley=headbanger.gif] [smiley=guyflash.gif] [smiley=jammin.gif]
the bb |
Title: Re: new to the forum Post by dennisnpr on Feb 16th, 2012 at 8:46am
Thanks for the info guys...I had a rollercoaster ride of pain last night. Just about every hour I was woken up with a CH. I just hope I can hold out until the 29th. Im going to look into o2 tank today...need to get faster relief from these things!!!
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Title: Re: new to the forum Post by Guiseppi on Feb 16th, 2012 at 9:01am
If you're getting slammed all night, hoof it down to CVS and get some Melatonin, an OTC sleep aid. Start with 9 mg about 30 minutes before bedtime. It affects your REM sleep....that's where beasty strikes! Many can avoid the night time terrors with it. You'll have to play with the dosing, some go as high as 18 mg, some combine half the dose with standard release, half the dose with extended release, to get them thru the whole night.
Joe |
Title: Re: new to the forum Post by markk38 on Feb 17th, 2012 at 1:15am
I've been taking 20,000 iu D3 + Fish Oil daily and 20mg meletonin before bed. I have not had to use O2 or any other meds in about two weeks. Not sure if it is the vitamins that did the trick or not, but I have no plans on stopping. I could probably back off the doses a bit now though.
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Title: Re: new to the forum Post by Headache Boy uk on Feb 17th, 2012 at 6:25am Hi dennis You say that your headaches are more frequent during the day and that you work as a painter. There may be a link between these two because strong smells especially solvents are a well documented trigger for CH during a cycle. There are lots of comments all over this board about the importance of keeping a headache diary . Doing so ,if you don't already , would show if you are getting hit worse when you are at work or not showing if the smell of paint is a trigger for you or not . Good luck and God bless Nigel |
Title: Re: new to the forum Post by Billie on Feb 17th, 2012 at 1:02pm
It sounds like you need a prophylactic med on board. When I was finally given a prophylactic that worked for me, I could have sworn I would bite someones head off if they took it away from me; I still do.
I don't know why abortives stop working because the same thing happened to me with Fioricet. I am guessing maybe we/the clusters build up a tolerance to them after taking them for so long. |
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