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Story about Cluster Headaches .

How CH was diagnosed ... how I manage my Episodic life

May 21, 2017

By: Mike


For years, my Intern/GP kept treating me for Sinus infections.  After a number of years, he sent me to an ENT for a CT Scan.  Everything was clear and he said, "you need to see a neurologist."  After reviewing my symptoms with the neurologist, he concluded that I was "text book" for Episodic Cluster Headaches.  That was 2006, and I had been managing these since at least 1998 ... maybe longer.

For years after being diagnosed, I resisted medicines given how quick they hit and my readings that since the duration 'could be short,' that medicine might not do much.

2013:  Medicine became acceptable, and the fight to get Oxygen started.  

I still believe in non-medicinal approaches to counter the beast:  Oxygen, Ginger (chewing on and putting a cold chunk on my eye ... the cold feels good, and the burn from the ginger sometimes tricks my CH Attack.  I also recently discovered that getting a B12 & D (Calcitriol) shot early in the cycle helps tremendously.

I am also getting better at admitting that I might be in a cycle.  If it's not too deep and the attacks are not completely debilitating, I start off small (Verapamil 120mg extended release) to see if I can calm it quickly.  It has worked the last 2 cycles.

If I wait too late, I take Prednisone (steroid) and taper down over 15 days, and in parallel, I start Verapamil 240mg extended release.

With either approach, if an attack starts to come on with a vengeance, I put Peppermint Oil in my nostrils, on my temples, and around my effected eye (eyebrown and cheek bone) and start the Oxygen ... if it does not work, I take a nasal shot of Zomig and continue with the Oxygen.  That generally works.

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