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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Ray's introduction
        
(Message started by: Ray on May 15^th, 2007, 11:32pm)

Title: Ray's introduction
Post by Ray on May 15^th, 2007, 11:32pm

It’s hard to imagine where to begin this bio. My name is Ray, I’m 49, and have cluster headaches for 20 years. Before that, I had an occasional migraine since my childhood days.

The clusters began during a long stint with insomnia, when my Ex- was pregnant with our first born. She, the daughter of a psychiatrist, was certain I was simply jealous of “her” pregnancy. I began as primary chronic, and in recent years, I have become episodic with 2 to 3 cluster periods per year. As an aside, I don’t know which is worse, knowing that I would be whacked at least once a day, or not knowing when it will begin again.

I’d cry, pace, stamp my foot, hyperventilate, ask why me, and so forth. My family practice physician was correct in his diagnosis the first visit. He referred me to a neurologist who was absolutely useless. I searched, as if for the Holy Grail, for some relief. I went to see Dr. Seymour Diamond in Chicago, and he hospitalized me twice for histamine desensitization, to no avail. No prophylaxis treatment has ever been successful. I did learn to instill lidocaine, and a more potent topical anesthetic which worked about 1/3 of the time. The laying down, laying still position, made the cluster pain 100% worse though. I used oxygen for a long time and it was helpful about ½ the time.

I had an opportunity to work in The Netherlands for a year and sought out Dr. Ferrari in Leiden. I didn’t qualify for the protocol to use Imitrex, so I could only use oxygen. It was a steel tank, and people would say “that’s not a bomb, is it?” to me on a regular basis. I took a ferry across the North Sea to England, and sought out Dr. F. Clifford Rose. He hospitalized me briefly and was not able to accomplish much either.

After I’d returned to The States, I used Imitrex injections, dividing the ampoules in half so I could use 4 shots in 24 hours, and often this was not enough either. Over the following years, my Ex- left me, took the kids, and moved 1000 miles away. As another aside, shared parenting stinks when one party moves away.

I’ve remarried, have 2 step kids and a 9 year old who live with us, was just turned down for SSD, and will appeal, and can’t hold down regular employment for any meaningful length of time.

I’ve spared you the many things I’ve tried that didn’t work, and many more “experts in the field” that I’ve seen, called, and written to. I have a bond with you all, and hope to share with you all.

In the trenches with all of you,

Ray

Title: Re: Ray's introduction
Post by ClusterChuck on May 15^th, 2007, 11:41pm

Welcome aboard, Ray, but sorry you have to be here.

I am also very medication resistant. Oxygen is my only savior, and like you, it doesn't work many times, but I still use it, and enjoy when it does work.

Most get refused, the first time they apply for SSD ... Apply again. You may find that you need to get a lawyer who specializes in this.

Good luck!

Chuck

Title: Re: Ray's introduction
Post by Guiseppi on May 15^th, 2007, 11:44pm

Welcome to the board Ray. Sounds like you have been through the ringer. For oxygen to work it needs to be pure 02 going into your lungs. Usually accomplished using a non re breather mask at a high flow rate, up to 15 lpm. Many have used it incorrectly and had it not work, using the nasal canulas, using a rebreather mask or using a flow rate that let in too much fresh air and diluted the oxygen. Might be worth looking at.

You didn't mention a preventative while on cycle. We;re almost the same age, I'm 47, when I'm on cycle I take 1200 mg a day of lithium. (I know don't tell your friends you're on lithium they'll talk real soft around you!!!!!) It blocks 80-90% of my headaches. I use oxygen and oral cafergot for the ones that break thru, with an occasional imitrex injection when I'm really getting beat up.

Lot's more people will pipe in I'm sure, welcome to our nut house!!!

Guiseppi

Title: Re: Ray's introduction
Post by Ray on May 15^th, 2007, 11:56pm

Hello again!

I feel well met! In short, I've tried Lithium (both salts, carbonate and citrate), for extended periods of time, with the frequent blood levels associated with it. It did not work for me. It caused an odd sensation of my tongue being too big for my mouth and somewhat affected my speech.

Oxygen did not work until I got a demand regulator. This is similar to a single hose scuba regulator. When you inhale, 100% oxygen flows, when you stop, it ceases flowing. In the olden days, when I was an EMT, we had one of these regulators in the ambulance. I have 2 aluminum "E" cylinders and a carry bag. It's great when it works and no needles!

I cannot recommend Oxygen highly enough. Try to find an old time pharmacy that has a respiratory specialist who can work with you to get the right tank, regulator, carry bag, work with insurance (they never seem to want to pay for anything!)

Peace and PF days and nights to you all!

Ray

Title: Re: Ray's introduction
Post by Guiseppi on May 15^th, 2007, 11:58pm

Hooray another "demand" regulator user!!! I've been alone for sooo long! I scored an old paramedic push button and modified it. Sounds like you have it well under control!!

Guiseppi

Title: Re: Ray's introduction
Post by Ray on May 21^st, 2007, 2:25pm

Hello Everyone:

Minor update, I'm beginning a cluster period. Had 2 yesterday, moderately bad, but not extreme -- Kip scale 7s. Oddly enough, I didn't get awakened after going to sleep. The beast is playing games, but I'll overcome. I hope to avoid the grouchies to the ones I love.

I thank God for my family, who try to do their very best for me. Thank you all for being here and relating to what we all go through.

Wishing you all PF days and nights,

Ray