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First Post and some Success! (Read 736 times)
conway
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First Post and some Success!
Apr 25th, 2012 at 10:23pm
 
Hello All,
I've been meaning to write here for a few days, because i've had some good results with medication and maybe I can pass my luck on to you.

I'm 37 and I've had clusters for about 16 years. They used to come 3 to 4 times per year for up to 6 weeks at a time. The past 3 episodes however, have been around 2 years apart. go figure. but they always last at least 4 weeks, usually 6.

the current cycle, which i suppose i'm still in, started exactly three weeks ago, came on more suddenly than usual, got bad much more quickly, and left me with extremely sensitive scalp, face and head the whole day. One common thing in all of my cycles is that the headaches ALWAYS come at night, and this was no exception. I was getting 8-9's three times a night, consistently at 2,4,and 6 PM. so no sleep for me.

Usually, I wait too long to see a headache doctor, or can't get an appointment early enough to do much about it. Or i'm just too stubborn to go, so I've never been on any real medication for these. I've always relied on ice and willpower, but this time I decided to see a specialist within about 3 days, and 1 week after it started i had an appointment. (if you need a reference in manhattan, let me know)

Here's the good part: This is what my doctor prescribed:

first, he gave me an IV corticosteroid in his office. (cant remember the name) This was a miracle. I felt almost normal within an hour and slept like a baby two nights straight and had no headaches for 48 hours. After those 2 days of bliss, I was stupid and drank a beer, and it all came back to me

He also gave me prednisone for a week. 50mg i think. I don't know if that did much except make me feel a little bloated.

And Depakote 500mg per night.

He also gave me a scrip for sumatriptan injectors and a few samples of a fancy new needle-less shooter, which I did use and they did work extremely well within 10 minutes, but i'm positive that they guarantee another headache after 5 hours, so I'm avoiding them. I've found that Red Bull works almost as well, just keeps you up.

I think this is very important too: I told the doc that i was taking several suppliments: vitamin d, magnesium, fish oil, vitamin e,  melatonin. he said "how much melatonin and when?" i said 3mg right before bed. He said No, take 10mg 4 hours before bed. I think this has has helped me in a big way. The one night i forgot the melatonin, the headaches did come back, but were lighter. maybe the depakote too. but i have been pain free for about 4 days. (although I have the flu now! Ha, I'll take it.) anyway I hope this can help someone out there suffering.

sorry I rambled so much. i didn't want to forget any details. I'll summarize quickly:

Normal headache cycle of 4 to 6 weeks was cut to 2.5 (1.5 weeks after start of treatment) weeks with:

IV corticosteroid (one time in office)
50mg prednisone (1/day for 7days)
500mg depakote (1/day continuous until 2 weeks after last CH)
10mg melatonin 4 hrs before bed
600mg or so magnesium
900mg or so omega-3
lots of vegetables and fruits
plenty of water

red bull in the day if neessary
ice
sumatriptan last resort

Please let me know if you would like any more info, and good luck to you all.

gs
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Mike NZ
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Re: First Post and some Success!
Reply #1 - Apr 25th, 2012 at 11:35pm
 
Hi Conway

It sounds like you've got a pretty good set of measures in place to deal with your CHs.

Have you tried oxygen for aborting CHs?
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« Last Edit: Apr 26th, 2012 at 6:22pm by Mike NZ »  
 
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wimsey1
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Re: First Post and some Success!
Reply #2 - Apr 26th, 2012 at 8:47am
 
Minus the O2, it looks like you're on a fairly effective and standard routine. I found the 50mg of prednisone curious. Usually it's on a taper and not a high dose for a week which is then dropped. Be aware many of us find relief with high doses of steroids but discover the beast coming back when we taper down, or in your case, come off the med. God bless. lance
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japanzaman
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Fukuoka, JAPAN
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Re: First Post and some Success!
Reply #3 - Apr 26th, 2012 at 9:58am
 
I would also caution against going cold turkey on the prednisone. It works really well for me, but because it wrecks havoc on your natural immune system you don't want to go off it suddenly as it can leave you open to infection. The rest of the stuff you mentioned sounds like standard cluster treatment.
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Brooke
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Re: First Post and some Success!
Reply #4 - Apr 30th, 2012 at 9:35pm
 
your treatment sounds pretty similar to mine except i dont do imitrex (sumatriptan) i use DHE. goodluck with it hope it all helps Smiley
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conway
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Re: First Post and some Success!
Reply #5 - May 5th, 2012 at 9:28pm
 
hello, just an update. no I haven't tried O2. I expected to come out of the neuro's office with some tanks, but he wanted to try the meds first.

I actually think the melatonin is what is helping me most. It has been 10 days since I wrote, and I have had only one headache, (the morning after I wrote the post) but since then, I have had none. I even had a weekend of moderate beer consumption with nothing more than a light hangover type headache. i'm still taking the depakote and melatonin every night. the two nights that I forgot to take them, I woke up with the feeling that I might a CH, but after a cup of hot coffee, it never transpired, luckily.

also, about the prednisone, I did get flu-like symptoms after the prednisone was done, three nights straight, I had fever and chills. don't know If i actually caught something or if it was withdrawal or what, but it's gone now and all seems well.

I'll let you know if anything else changes.
everyone take care.
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