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        New Message Board Archives >> 2004-2005 Getting to Know Ya Posts >> God does answer prayers--I found you!
        
(Message started by: Salvelinus on Aug 3^rd, 2005, 5:46pm)

Title: God does answer prayers--I found you!
Post by Salvelinus on Aug 3^rd, 2005, 5:46pm

Hi, everyone. I'm new here--been lurking for a couple weeks reading all I can. I think it is time I introduced myself.

My name is Scott, and I've had chronic cluster headaches for 18 years, with about a 5 year span of clusters and remissions. I didn't realize what I had back then, though. I just dealt with them the best I could until a couple years ago when I was finally diagnosed by a neurologist I work with (I work at a rehabilitation hospital). Even then, I really didn't understand fully what was going on. It didn't matter much, because the predisone and verapamil and imitrex were giving me some control--finally.

Until this spring. The prednisone worked for a few days, but the verapamil didn't--no matter how much I took. Even my expensive buddy Imitrex didn't work all the time anymore. I couldn't get in to see my neuro--it took literally a week to schedule an appointment a month later. I was getting desperate, and scheduled with another neurologist, who printed out the medical info from this site.

That's how I found you, and *oxygen.* For years I've prayed and prayed for this demon to be lifted from me. I've asked Him to let me find an answer. And He did. He led me here.

For the first time in 18 years, I realized that others actually were going through the same thing. I'm a physical therapist, and have tried many, many different treatments. I actually thought some of them were the answer--now I realize how foolish that was. That sounds bad, but realize that it feels like a weight has been lifted from my shoulders. How can I possibly be a good therapist when I can't even fix myself? I think some of the treatments may have helped, but none of them consistently. I'd be happy to share some of them with anyone interested, though NOTHING has worked as well as the oxygen for me.

I've used oxygen three times now when I got hit at work, and each time the headache aborted within 3-4 minutes. I couldn't believe it. Almost immediate relief, and no crappy side effects! I still get goosebumps when I think about it.

I still can't read the homepage without breaking down. I'm just amazed at how well people here have described what I have gone through--you really do understand! I've printed off the "Employer information sheet" and handed it out to everyone at work, my family, and my friends.

I've cried almost every single time I have visited here. It is both depressing and uplifting at the same time. I feel drawn here. My only hope is that I might be able to help others as much as you've helped me.

You all surely each have a special place waiting in Heaven . . . you are all angels. God bless each of you, and may he give you lots of PFDAN! ;;D

Namaste,
--Scott ><>

Title: Re: God does answer prayers--I found you!
Post by E-Double on Aug 3^rd, 2005, 5:53pm

Right on Scott!

Welcome aboard and please share all ya can.
Tons of info here as you have found.

Enjoy the O2 and enjoy the assurance knowing that you are no longer alone!

Best to ya

Eric

Title: Re: God does answer prayers--I found you!
Post by lionsound on Aug 3^rd, 2005, 7:44pm

Welcome, Scott!

So glad the O2 is working for you! :)

I just loved reading your post. it's what this place is all about. Thank you for de-lurking and sharing.

Be well and Pain Free,
lionsound

Title: Re: God does answer prayers--I found you!
Post by nani on Aug 3^rd, 2005, 7:55pm

Welcome, Scott. I'm glad you're here, grab an oar. :)

pain free wishes, nani

Title: Re: God does answer prayers--I found you!
Post by Kirk on Aug 3^rd, 2005, 10:57pm

So yer a Physical Terrorist. I always said I wouldn't wish the beast on anybody, but yer pushin the envelope pal. So watchit buster [smiley=smartass2.gif]
I'm really glad the O2 is doing the job for you. I swear by the stuff. Welcome aboard [smiley=smokin.gif]

Title: Re: God does answer prayers--I found you!
Post by jcmquix on Aug 4^th, 2005, 5:40am

Hi Scott...

Welcome... I am glad that you found this site also... I know what you mean about the start page... I first read it about 3 or 4 yrs ago, I did not log on then... My CH's went away for about 3yrs, then started this last June 1st, I returned and have been here every since.

I am sorta a newbie to the O2, but its gaining alot of my respect. I just need to build the patience to use it, hard to use it during Bad hits.

Its nice to know that you are not alone with the CH's and that you are not going crazy, thats what I thought years ago. This site in the last 2 months has given me a total different outllook on CH's & Life in general.

You can beat the BEAST & Have a Life !!!!

PFDAN's to YOU!!!!

Title: Re: God does answer prayers--I found you!
Post by marlinsfan on Aug 4^th, 2005, 7:24am

Scott, I too cried the first few times I came here, and I do my darndest to hide my pain at work, which are usuaslly just shadows as my hits come when I sleep. Here I am, though, in my cube in front of my computer, crying out of BOTH eyes after reading your post. Normally I only cry out of my right one, and that's only when the pain comes. I have no pain, just water in my eyes this morning.

Welcome. I've been here 2+ months now, and this crew has made me feel welcome and one of their own.

Jose

Title: Re: God does answer prayers--I found you!
Post by seasonalboomer on Aug 4^th, 2005, 7:38am

Scott,

From another Scott, welcome. I too found the "miracle" of oxygen finally this year. After years of acting as though I could gut it out or that I wasn't worthy of the trouble of going about getting a tank. It's been pretty effective for me as well and is uplifitng to know that I would have never got it without the info from this site and the encouragement provided by its members.

Keep your chin up and read on. Underneath the top level of much of what is shared here is the real message there is hope and strength in sharing. Even though on the surface some of it is sad and brings tears, the opportunity to share it with others who care and understand is where the seeds of hope and strength are fostered.

Best regards,

Scott

Title: Re: God does answer prayers--I found you!
Post by Sandy_C on Aug 4^th, 2005, 11:19am

Welcome Scott. You have just found an extended family here, who know exactly what you are going through. I lurked on this site for quite awhile before I finally logged in. Found a wealth of information and am making some awesome new friends. Just like your real family, some of them are a little bit "wacky" (and that's putting it mildly) ;), but each and every one of them are here for you when you need them most. I called this place a Godsend from the minute I found it too.

Sandy

Title: Re: God does answer prayers--I found you!
Post by Chillrmn1 on Aug 4^th, 2005, 5:25pm

NAMASTE My Friend!

Everyone on this thread has given you excellent advice. As others have already said, this site and forum has a treasure trove of invaluable information and support for cluster sufferers. Read, read, read, and ask, and most of your questions will be answered.

Glad you found the site,
Bob

Title: Re: God does answer prayers--I found you!
Post by Goblin on Aug 4^th, 2005, 5:44pm

I too have been lurking for a week or so. My name is Bob and been seffering since 5th 1972 grade wasnt diagnosed till 1993 been real steadt cycles until this year went into cycle and have not stopped for more than a couple days back in november. It is really hard to believe there are so many that suffer from this. well I hope to be able to stop by and say hi some more and hope when I need help there is support that I have seen so far.

Enjoy.
Bob

Title: Re: God does answer prayers--I found you!
Post by Kris_in_SJ on Aug 4^th, 2005, 7:02pm

Welcome to the family,

Glad you found the relief you've been desperately seeking. Oxygen is a savior for many here. Stick around and keep posting. The light is always on!

Hugs,

Kris

Title: Re: God does answer prayers--I found you!
Post by jcmquix on Aug 4^th, 2005, 8:57pm

on 08/04/05 at 17:44:53, Goblin wrote:

I can tell one thing, the light has always been on here for me 24/7 for over 2 months now...

Don't be a Stranger...

Pain Free Days To You !!!

Charlie

Title: Re: God does answer prayers--I found you!
Post by Salvelinus on Aug 7^th, 2005, 12:11pm

;;D

Sorry, I haven't been back here in a few days. I work pretty much every day lately (wonder why my headaches are so bad . . . ) and I've been reading the info and links here and at the OUCH site.

Thank you all so much for replying, and for making me feel so welcome. This really is a special family . . .

Kirk: Yep, that's me, but I've been called worse . . . ;) Actually, it's always been very interesting to me how everyone perceives pain differently. In my job, I ask each patient daily to rate their pain on the old "0-10" scale. I have quite a few patients laugh and tell me they're having "10/10" pain at the time. I know each of you realizes that if you can say you're having a 10, you aren't really having a 10. If you can smile and or laugh when you say it, you really don't have a clue. I really like the Kip scale here, but that's only descriptive for clusters (and very accurate, I might add). After the patient tells me their pain is a "10," I describe a "10" as needing to get to the ER immediately. They usually say "Oh, no, it's not THAT bad . . . it's more like a "9." ::)

Jose, I know what you are talking about. My desk used to be in an enclosed office with only one other person. Now I am in a larger room with about 10 others, which is also the "headquarters" area for therapy. Our schedule board is there and all our paperwork. I used to be able to just close the door for a while. Now I'm stuck. My headaches usually ramp up slowly enough that I can take my Trex and put my head on the desk or find an empty treatment room until it starts to work. A few months ago the Trex didn't work as well, and didn't work at all once. That day the CH ramped so fast I couldn't go anywhere. Within a couple minutes I was crawling and rolling on the floor, moaning and crying, with people coming and going. I couldn't stand or walk at that point. It was humiliating. All I could think about was crawling under the desk to hide, but I couldn't get my arms and legs to work right. An hour later it was finally fading a bit, and I was able to crawl onto my chair. I NEVER want that to happen again! :-[ >:(

Bob--welcome. I'm glad you joined, too! :D

Title: Re: God does answer prayers--I found you!
Post by floridian on Aug 7^th, 2005, 6:22pm

Namaste, Scott

Glad we connected and you found the oxygen treatment... read more to help yourself - there is plenty here.

Jonathan

When you are in that place in you,
and I am in that place in me,
We are One.

PS - got any ideas to share on PT for the lower neck and shoulders? I have been the Rice Krispies man this week: snap, crackle and pop (and consistent discomfort to moderate pain).