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dennisnpr
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new port richey
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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. Undecided
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Guiseppi
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Reply #1 - Feb 14th, 2012 at 9:34pm
 
Welcome to the board Dennis. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. The Midrin is a migrain med that tells me the doc isn't quite up to speed on current treatment options. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I suspect that was the hope with the Midrin. I tried it in the early 80's and it didn't help me at all. I use lithium now, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen.  Hoping it wasn't the pill form of imitrex your doc prescribed, the pain of CH tends to ramp up way too fast for the pills to really help at all.

Go to the medications section of this board and read the post "123 pain free days and i think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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thebbz
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Re: new to the forum
Reply #2 - Feb 14th, 2012 at 9:56pm
 
Oh that Joe is a tough act to follow....what he said.hhe.he.he.he
and this
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and thatMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
oh ya and this too
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Cheesy Cheesy Cheesy Cheesy Cheesy Welcome and study your condition.
all the best
the bb
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RichardN
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Reply #3 - 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
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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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thebbz
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Reply #4 - Feb 15th, 2012 at 9:09pm
 
Yea Richard....you rock, now you can drink beer and smoke pot...he.he.he Grin Grin Grin Grin J/k...I am so happy for you.May it last as long as you were in pain., Smiley Smiley Smiley Smiley
the bb
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dennisnpr
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Reply #5 - 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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Guiseppi
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Reply #6 - 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
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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markk38
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Reply #7 - 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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Headache Boy uk
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Reply #8 - 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
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You can't speak a kind word too soon, For you never know how soon it will be too late.

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Billie
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Reply #9 - 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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