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New here, thanks for the info (Read 858 times)
Maaackus
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New here, thanks for the info
Oct 20th, 2013 at 6:22pm
 
I found you in the past and definitely found all of your info here extremely useful and figured I would finally join and contribute. I have been suffering from ch for about 2.5 years, diagnosed 2 yrs ago. 

I was originally misdiagnosed with MS, talk about a scary time, so having ch is actually the upside for me.   Fortunately I had problems with my neurologist and switched hospitals.  The new neurologist just happened to be one of the ch leaders in the north east, thank god.

I suffer from a mix of acute and chronic attacks.  I was getting 12-20 attacks a week for the first year, but am now down to 3-4 attacks a week regularly. With seasonal changes bringing the frequency back up to 12-20 attacks for 2-3 week spans. I have been somewhat responsive to preventative therapist.  I'm on the highest safe does of verapamil as a preventative.  But am extremely pleased with my response to sumatriptan, as 1-2 doses will ease an attack to manageable levels.  Just recently I have begun oxygen therapy and have not seen an advantage at all.   

Other than that, I try to avoid triggers, and have found some natural therapies to lower my chances of an attack when I have been exposed to my triggers. 

I look forward to my experiences helping other new sufferers.
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maz
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Re: New here, thanks for the info
Reply #1 - Oct 20th, 2013 at 7:19pm
 
Hi Maaackus   Smiley

I'm surprised that oxygen isn't helping. But it must be used in the correct way to be effective. It MUST be a flow rate of 25 ltrs per minute (to support hyperventilation) and you MUST use a non-rebreather mask.  Other types of mask, and the nose cannulas will not work. There is a tab on the left of your screen titled "oxygen info" highlighted in yellow. You'll find all you need to know there.

Also, go to the "medications, treatment and therapies" board and find a thread titled 123 days pain free and I think I know why", by Batch. It's a very long thread, about a vitamin D3 anti inflammatory regimen. IT WORKS. So read thoroughly and give it a go.

Hope this has helped. Maz.
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wimsey1
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Re: New here, thanks for the info
Reply #2 - Oct 21st, 2013 at 9:39am
 
Given the time to abort it sounds like you are using pills rather than injections. Sumatriptan injections are much faster. And what do you consider the highest effective dose of verapamil? blessings. lance
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