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This works for me (Read 692 times)
toronto sufferer
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This works for me
Apr 23rd, 2012 at 1:27pm
 
I have been suffering through these horrible bouts on and off for more than 20 years now.  I am 53.  Episodes began in my late 20s.  My last bout was in 2008 (thought I beat it!). 

CH was diagnosed by a neurologist many years ago and I was prescribed high dose prednisone (50 mg tapering after a week).  I hate this drug!  The side effects are terrible but just about anything is better than a bout of CH!  I also found oxygen helpful for symptomatic relief (you can get this with a prescription from Medigas -- they deliver).  This one two punch usually did the trick, until now.  I guess a bit older, a bit heavier, the prednisone did not submerge the pain.

I am now in week three from hell but finding relief from the following:

1.  oxygene (you have to get this delivered to your home.  Ask for an M tank);

2.  Sumatriptan SUN injection (DIN 02361698).  This is a miracle drug!!!!!!!!  IT STOPS THE ATTACK COLD AND WHEN TAKEN JUST BEFORE BED ALLOWS ME TO SLEEP THROUGH THE NIGHT!!!!!    The same drug in pill or inhalant form does not do the trick for me.  This injectable works!  I know, injecting yourself does not sound appetizing.  Its really no big deal.  The kit is like an epipen.  Completely idiot proof and you just throw it away after use.  I carry it with me and I've used it when i feel an attack coming on.  Get a bunch of these and keep them around. They work.

3.  Because the prednisone didn't work this time, i am now on Verapamil tablets 160 mg three times a day). I tolerate this better than the prednisone but it has yet to kill the headaches.  I'm told it works over a few weeks.

Hope this helps someone. 

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« Last Edit: Apr 23rd, 2012 at 1:28pm by toronto sufferer »  
 
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Potter
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Re: This works for me
Reply #1 - Apr 23rd, 2012 at 1:32pm
 
Check this out.
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Callico
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Re: This works for me
Reply #2 - Apr 23rd, 2012 at 10:18pm
 
Your Verap is probably a bit low, but it will take a few weeks for it to titrate up to the level you will need.  You may need to increase your dosages, but be sure to work closely with your Dr on this.  You don't need a blood pressure drop.  Some of us have been over 1000mg a day to get relief.  Hopefully you won't be one.

Jerry

Edit to add:  What Potter said!  Check out Clusterbusters.
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« Last Edit: Apr 23rd, 2012 at 10:19pm by Callico »  

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japanzaman
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Re: This works for me
Reply #3 - Apr 25th, 2012 at 11:04am
 
You sound like a pretty typical cluster sufferer. The most important thing is that you've found a way to get the beast under control. Don't be surprised when he decides to change things up again, though.
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