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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> All around newbie
        
(Message started by: Gator on Mar 23^rd, 2004, 6:17pm)

Title: All around newbie
Post by Gator on Mar 23^rd, 2004, 6:17pm

I was only recently struck (and to my amazement after reading some of your personal experiences- quickly diagnosed) with this affliction. I'm a 41 year old husband, father of 3 and was a pretty darn good computer tech until this. I was originally diagnosed with Cluster Headaches in November of 2003. They lasted for about 6 weeks and went into remission. They came back about 2 weeks later with a vengence of biblical proportion. I've been in almost constant pain ever since. I have a "background" headache most of the time, with pain ranging from ice pick to butcher knife to sledge hammer breaking in once in a while to let me know it is still there. Always on the right side of my head. I managed to work through the pain for a couple more weeks, but finally had to take a medical leave of absence while the docs get this thing figured out. (I now wonder if they ever will) The bulk of my job has me doing telephone tech support - can't have me screaming in pain in a customer's ear now, can we? The rest of my job has me entering data into the computer, since teh second wave of attacks, I usually can't spend more than 30 minutes to an hour looking at a computer screen or a television. I suspect it has something to do with glare and refresh rate of the screen. So much for the computer tech gig. I was given an MRI which, of course, showed nothing to worry about. I was then sent to a neurologist who diagnosed Paroxysmal Hemicranias. He said I'm somewhere in the spectrum between there, Hemicrania Continua and Cluster Headaches. The symptoms won't play nice and allow themselves to be pinned down to fit the exact mold of any one heading. I've been experimented on with Relpax, Fioricet, Percocet, Indomethacin, Topamax, Naxproxen and oxygen so far - most of which seems to do not much good. The Indomethacin seems to lessen the severity and frequency somewhat. The Topamax actually caused them to get worse.

I know what some of you are asking right about now - yes, my head is killing me, but this sight is so full of good information and support from others with the same problems, that I just had to put up with the pain for a little while longer to get through more and more of it.

Another Neuro appointment tomorrow. Wheee!

Title: Re: All around newbie
Post by FZfan on Mar 23^rd, 2004, 6:35pm

gator, welcome.

In addition to reading other folks experience, be sure to read all the info available on the menu to the left. Take the cluster quiz. Also, reconsider o2 if you discover you weren't using it correctly, as I did.

Good that you're seeing a neuro. But even some neuro's lack knowledge and/or experience dealing with CH. Don't be afraid to share any info you find here with him. And don't hesitate to change docs, if necessary.

As far as the computer screen refresh rates? I suppose that's possible. One of the bizarre things about CH is there seems to be no common trigger. Some folks have no triggers at all. I work at a computer terminal all day and then spend more time on it at night, have for years. In my case, it has no effect on my cycles.

Sure sorry to hear about your pain, but if you do have CH, you have come to the right place.

Dive in.

Title: Re: All around newbie
Post by Luke63 on Mar 23^rd, 2004, 6:42pm

Welcome Gator. i think we all tried things to no avail....but I might as well throw my 2 cents in ok?
Do u have high BP? I did and was placed on verapamil. Have you tried a prednisone routine yet? I just went to a neuro last week and was placed on Depakote ER..just some food for thought for ya.And as I was not a beleiver..I am now...Oxygen does have its benefits....I guess u have alot of homework to do huh? Well..PF wishes to you...and like everyone else said....you've come to the right place...and again...welcome. Luke

Title: Re: All around newbie
Post by Superpain on Mar 23^rd, 2004, 8:48pm

Get an lcd screen.
What is your O2 setup?

I also experience both ch and cph...
CPH is just annoying as hell! Talk about keeping your ass up all night!
But the ch is a whole 'nother story!

Welcome and good luck!

Title: Re: All around newbie
Post by Gator on Mar 24^th, 2004, 12:22am

Thanks for the welcomes and the heads ups. Like I said, I am still new to all this and I guess am kind of fighting it more than treating it. You know how we big cave man type just try to "ignore the pain" or "push past the pain." I've learned that you can't do that with these damned headaches. I've literally been shot, stabbed, poisoned, had broken bones, been in some knock down drag out fights and had the mother of all hang overs - nothing compares to these headaches. What's harder still is the lack of ability to interact with the wife and kids like I used to. It's hard to go from being "SuperDad" (kids are so good for your ego :D) man who can do anything, fix anything, be anything to being a man who can't make it through the day without a (sometimes several) head-banging, foot-stomping screaming and sometimes bawling fit(s). My GP and Neuro haven't had a lot of time to try everything, yet. From all that I have read here and in other places, this may take a while to nail down and longer, if ever, to resolve.

Whether the O² helps seems to depend on when I get to it. If I start it early enough, it can be almost abortive - at the very least it can lessen the severity or maybe that is just a coincidence? Sometimes, though, it seems to have no effect and others, it seems like it actually hurts more while I'm hooked up to it. Again, this all may tie into how soon I am able to get to the O² once I realize am fixing to get zapped. I guess I am still learning.

O² is just a standard portable tank, setup for a max of 8 liters per. I do realize (thanks to this website) that after using it for a little over a month, I have the wrong mask. The medical supply place the doc sent me to gave me the little tubes that stick in your nose type. I have to go get my tanks refilled tomorrow after my neuro appointment and I'll get the right mask then.

As far as my general health: I am what my doctor describes as a generally very healthy overweight person. BP 110-120/60-70; Pulse 70's-80's; Total Cholesterol: 145. Over the past few years, I have had X-Rays, Angiogram, EKG, Holter Moniter, MRI - Heart, Lungs, blood vessels, brain - no problems found. Biggest problem is weight: 390lbs on a 5'11" big boned frame. Both the GP and the Neuro agree that the weight have nothing to do with the headaches.

Stay tuned for more: "As the Stomach Churns!"

Title: Re: All around newbie
Post by pubgirl on Mar 24^th, 2004, 12:22pm

Gator

It would be a good idea maybe to read up on Goadsby's stuff on 'cluster variants' which includes diagnostics and treatments for the clusters that manifest elements of other TAC and headache types such as HC/CPH/Migraine.

http://www.clusterheadaches.org/library/general/ch_general.htm

It is towards the end of that article

Wendy

Title: Re: All around newbie
Post by Gator on Apr 1^st, 2004, 2:22pm

Thanks for the info. I have read through all the information on both sites as well as several others. At least the ones I didn't have to pay for - money grubbin' @%&*!!!

Actually, my GP gave me a printed copy of the information, although, it was from a Doctor's Website and not the OUCH site - same text though. It seems my symptoms run somewhere between CH and CPH, depending on the day and the attack. From what I've read, it is not uncommon for a person to have both CH and CPH at the same time. With the new mask, the O² seems to work much better. Sometimes even abortive if I can get to the tank soon enough.

My neuro is a young, but conscientious man who is not too proud to say, "I dunno." He has referred me to a "Headache Specialist" in Tulsa, OK (why don't I feel comforted) who I will see for the first time April 15.

I must say that this site and all the people I have encountered here are the absolute best thing a CH sufferer can ask for, besides a cure.

Thanks again!

Gator

Title: Re: All around newbie
Post by cathy on Apr 1^st, 2004, 2:57pm

Gator welcome aboard, pain is pain is pain, but CH's are something else......sorry your here but PF time vibes coming from across the pond.

Cathy

Title: Re: All around newbie
Post by Melissa on Apr 1^st, 2004, 4:37pm

on 03/24/04 at 00:22:55, Gator wrote:

O² is just a standard portable tank, setup for a max of 8 liters per. I do realize (thanks to this website) that after using it for a little over a month, I have the wrong mask. The medical supply place the doc sent me to gave me the little tubes that stick in your nose type. I have to go get my tanks refilled tomorrow after my neuro appointment and I'll get the right mask then.

Gator, not only do you need a mask instead of the tubes, but you also need a regulator that goes up to 15 liters per minute. 8 liters per minute isn't going to do it. Now that I've told ya that, welcome to the family! I'm very very sorry you have to be here :(, but this is the best place for support you'll ever find!

Take care,
:)mel

Title: Re: All around newbie
Post by TxBasslady on Apr 1^st, 2004, 9:50pm

Welcome to the board, Gator.

Have to agree with Mel. You need a regulator that goes to 15L. At 8 I can understand why it doesn't help.

Your neuro should be willing to do this for you.

Good luck with the doc's.......

PF vibes,

Jean

Title: Re: All around newbie
Post by buckeyescooter on Apr 1^st, 2004, 10:54pm

Welcome Gator...as you can see by my moniker I'm a newbie as well. If you're still not getting any relief be sure to ask yor doc about a predinsone taper....it's a nasty fuckin drug but it's also Very effective in high doses for a SHORT period of time. It also gives you a little breathing room to let the preventative drugs take hold. Get a regulator that goes to 15.....these guys know what they're talking about. Sorry you got tagged, but glad you're here. I've had these things for 20 years and this is my first week on the site. ::)