Hi everyone, I'm Paul from N/E UK.

Been suffering from Cluster Headaches for around 4 years now, only recently diagnosed.  Started out as cyclic but now chronic, I have shadows 24/7 most of the time.

My neurologist is trying me on triptans - so far up to 3 x 200mg daily, but since I have heart problems (I'm 37 and had 3 heart attacks and would honestly take the pain of a heart attack over a CH episode any day!) he is increasing the dosage very slowly as I understand triptans can be very dangerous for someone like me.

Has anyone had any success with any alternative medicines/treatments?  It seems like most of the standard CH treatments/medicines can be dangerous for someone with my heart problems.

I normally poo-poo "alternative" therapies (acupuncture, reiki etc), but I am honestly at my wits end.. I haven't slept for more than 2hrs at a time for the past year and will try anything!

The only reason I haven't become another statistic for the "suicide disease" is the effect it would have on my parents and fiance.

Hi, a couple of suggestions. Go to the meds section and read the topic "123 pain free days and I think I know why" It's a daily supplement regimen, all over the counter stuff, providing a lot of relief for many.

Are you working with a headache specialist? Does he have you on a prevent like verapamil, lithium or topomax? Triptans are effective aborts for many but you can reduce your need for them with a decent prevent.

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Go to this link. This is our sister board which goes into great depth on some of the optional treatments outside of mainstream medicine.

Welcome to the board.

Joe

Agreed that most of the standard CH treatments/medicines can be dangerous.

So this should mark a very good day in your fight against the beast - the day you started learning how to seriously turn this thing around, as has been the case with so many of us when arriving at his forum.

Guissepi/Joe is right on as usual with his comments BTW, so please consider those to be golden. 8-)

The vast vast majority of us regulars around here (including Joe!) have adopted high flow / non rebreather O2 as outlined in the oxygen info link to the left as our first line abortive, and those of us who still use imitrex as a backup tend towards injecting reduced, but still very effective doses. Here are the details about that:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

To blab on a little bit more now about clusterbusters.com, this is where many chronics have turned when the  conventional meds have failed them, only to wish they'd gone this route much sooner! It is gaining wider and wider recognition for prevention results that can exceed those of any prescription drug. Here's a Newsweek article about clusterbusters, and look for a National Geographic special about it soon too: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

While preventive meds are first line defense for Chronic, the heart issue requries some care in selection and use--we agree.
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print out the PDF file, below and, if you are willing to burn up some paper, print the Robbins manual and use both to discuss options with your doc.
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ALL NEW!! HEADACHE 2010-2011
Robbins Headache Clinic

Free, 50-page. Covers all major headache Dx and
related issues.

PDF file.

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  Hi & Welcome to Clusterville

  Stretching my memory a bit, but contact  OUCHUK.com (is that the right link guys?).  They have a hotline and you can talk to people who do understand this beast of ours. 

  Have your doctor fill out a HOOF form (Home Oxygen Order Form), and "tick" the box for Cluster Headaches.   The NHS will set you up with 02 and non-rebreather mask (the one with the bag . . . though smaller bag than the 3 litre Op2mask).  The NHS (unlike many of our med professionals) recognizes 02 as an effective abortive for CH.

  Hope this helps . ..  02 is a miracle abortive for most of us.

    Be Safe,    PFDANs

       Richard

Make that ouchuk.org

  Richard