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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Texas Clusterhead

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Texas Clusterhead (Read 1523 times)

Ash625ley

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Texas Clusterhead
Jan 19^th, 2015 at 6:19pm

My name is Ashley and I'm 27 years old. I've been a clusterhead since I was 23. These past 4 years have been some of the hardest years of my life. I am an episodic sufferer and the longest I've gone without an episode or attack as I like to call them, is 5 months. Most of my cycles last 2-3 weeks and are extremely debilitating. They've interrupted lots of things in my life such as vacations, and more importantly college graduation. I had to withdraw from what was supposed to by my last semester because I went into my first cycle that lasted 2 months. I graduated the next semester, but then the real trouble began. Having to find a job with a boss that would understand my condition proved to be difficult. I've felt like giving up so often. I get so much anxiety when the shadows come and I know an attack is inevitable. I am currently on a cocktail of Elavil, Propranolol, and Keppra along with imitrex injections for emergencies. I've been on this cocktail for about 1 year now and it has worked well up until now. Episodes started up on New Year's Eve (great way to start 2015), and they've stuck around until today. I'm so glad I found this forum, it can be so lonely suffering from something that no one understands. Thanks for hearing me out and I look forward to making some friends here.

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Texas Clusterhead Reply #1 - Jan 19^th, 2015 at 6:36pm Hi Ashley, and welcome, Have you tried Verapamil as a preventative ? this is the #1 treatment when it comes to keeping the at bay, also have a look at the Vitamin D3 Regime on here, it has a 60% chance of you becoming pain free. Hoppy
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Mike NZ

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Oxygen rocks! D3 too!

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Auckland, New Zealand
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Re: Texas Clusterhead
Reply #2 - Jan 19^th, 2015 at 6:54pm

Hi Ashley and welcome

Are you working with a headache specialist?

The reason I ask is that your medication, other than the imitrex injections, are not commonly used for CH. Elavil (amitriptyline) can be used as a CH preventive, however it is not normally used too frequently as there are other preventives much more effective, like verapamil, lithium and topomax. Propranolol is a good migraine preventive but it isn't too effective for CH prevention. Keppra is an anti-epileptic drug that has had some very limited results with CH.

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maz

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Hampshire, England
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Re: Texas Clusterhead
Reply #3 - Jan 19^th, 2015 at 7:27pm

Welcome Ashley
Pure oxygen delivered at a minimum of 15 litres per minute (more is better) with a non-rebreather mask is almost as good as imitrex injections. I use the oxygen at home and save the injections for when I'm out.

You can also get smaller portable oxygen tanks that you could take to work along with your injections.

Here's a tip that might help. At the very first sign of pain - don't wait till it's ramped up, chug down a red bull, really fast. It's the combination of caffiene and taurine in a sudden hit that does the trick, so any energy drink with those ingredients will do, ie: rockstar, monster etc. It doesn't work for everyone but many folk on this site swear by it.

You are not alone any more. Now, you have hundreds of us who really do understand what you go through. Keep coming back and you will learn more here than from any doctor. Let us know how you get along.
Maz.

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Ash625ley CH.com Newbie Offline I Love CH.com! Posts: 3	Re: Texas Clusterhead Reply #4 - Jan 23^rd, 2015 at 2:21pm Hi Mike, I'm currently seeing a neurologist. I haven't found a headache specialist where I live. I have an appointment this coming week and I'll ask about the meds you mentioned. I'm so glad I found this site. I'm finding so much good advice that hopefully will help me tame the beast.
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Ash625ley CH.com Newbie Offline I Love CH.com! Posts: 3	Re: Texas Clusterhead Reply #5 - Jan 23^rd, 2015 at 2:23pm Maz & Hoppy, Those are some good suggestions. Unfortunately I'm in the middle of a cycle right now so I can try them out and see how they work out for me. Thanks!
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