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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Time For a Proper First Post & Hello
        
(Message started by: Weatherman on Jun 28^th, 2006, 10:59pm)

Title: Time For a Proper First Post & Hello
Post by Weatherman on Jun 28^th, 2006, 10:59pm

Hello Everyone,

My name is Doug.

Let me start by saying thank you to whoever started this wonderful site and thank you to all of you that make this site so wonderful. As much as I hate to see anyone suffering as I do, I'm glad I'm not alone out here. I havn't ever had anyone to talk to about this that understands so if I get long here, please forgive me.

I've been an episodic CH sufferer for 15 years now but it wasn't until a few years ago that I found a Doc. that actually knew what this was and properly diagnosed it.

Before then, I didn't know what this was either. My old Doctors would give me pain pills if I wanted them but they never worked for me. My body has never reacted well to narcotics. They make me dizzy and sick to my stomach while the pain goes on. Until I found my current Doc, my best line of attack was way too many Goody's powders. They seamed to provide a little relief. I've learned that may be because of the caffeine. At any rate, that was all I had. It was a very rough 12 years.

My first episode with the new Doc was wonderful. He believed me... He understood... He recognized it right away and knew what to try. I was the first patient he had ever had with CH's but he was ready. He imediately put me on Varapimil, Prednasone and O2. I was about 2 weeks into my episode. I was amazed at the results! Within 2 days the CH's stopped. The side effects sucked. I was edgy, irritable, anxious and I gained weight fast....but no headaches!!! As you all know, the trade off was well worth it!

2 years went by after the treatment and no headaches!! I ALWAYS got them every year. I thought it was my turn to maybe "grow out of them".

Unfortunately about a week ago I found that I wasn't so lucky and have started a new episode. I don't know if I forgot how bad it was or what but this time around, it seems worse than ever. Im getting 5 to 10 a day...4 or 5 at night. Most are Kip 7 to 9. I've become scared to go to sleep. My Doc couldn't see me until tomorrow. I'm sure we'll repeat my treatment from 2 years ago and I can't wait to get started. I have my O-2 but it doesn't seem to help as much as it used to.

While I've been waiting I found this site a few days ago. Been doing a lot of reading here! I'm now trying Kudzu and Melatonin. No good news yet but I think it's too soon.

Anyway, I told you I'd be long here...sorry. I get my prescriptions tomorrow and can only hope and pray they work as well as they did last time. They need to. My nickname is what I do for a living. Yes, I am a weatherman. Those of you from Jacksonville, FL have probably seen me on CBS47 and FOX30. Try to imagine this....you're in the middle of a major attack, you gotta do the weather. There are severe storms around. You gotta go on. Very very bright and hot lights. Your right eye is totaly bloodshot. Your eye lid is swollen and red. Tears are pouring out of the eye. Your nose is stuffed and running. All you want to do is roll on the floor and cry but thousands of people are depending on you for their weather information. You have no choice. You have to go on. You do the best you can but you know you're not 100% and you know someone out there is noticing. Sounds like fun huh? Sheesh!!!!!

Anyway, thanks again to all of you. I will be here daily. I'll let you know how the meds work and look forward to hearing more about how you all are doing.
Take Care and God Bless!!

Doug

Title: Re: Time For a Proper First Post & Hello
Post by Richr8 on Jun 29^th, 2006, 1:27am

Thanks for thr bio WM and welcome! I use the pred tapers myself and have vowed never again. The pred is too hard on my joints anrd ecovery takes months. Never mind that being an anxious type to begin with, the pred tapers make me insane. The weight gain and the sleep dep issues, fugedabouit!

You might want to share the methods here with your neuro:

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: Time For a Proper First Post & Hello
Post by dissident on Jun 29^th, 2006, 1:50am

Doug,
I admire you. Clusters are so debilitating, honestly, I don't know how you do it. There is no way I could deal with that kind of situation...and we've got a loooong hurricane season ahead of us!
The person who created this wonderful site is the one and only D.J. (Daren Johnson). He's also deals with this monster we call Cluster Headache (still don't know why they call it a headache, it's sooooo not a headache).
Prednison worked wonders for me the first time around. It completely broke my cycle. When my next cycle arrived I was confident that the Pred would work but all it did was make me bloated-looking and crazy. My poor wife...oh man what hell I put her through (mood swings).
Let's hope the Preds work for you again! Keep your head up and try not to get discouraged. As bad as it seems now...it WILL get better.

P.S.
Welcome aboard! Glad you have us...and we have you.

Title: Re: Time For a Proper First Post & Hello
Post by Jasmyn on Jun 29^th, 2006, 3:16am

Good Morning Doug and Welcome!

It is wonderful that you found us, now you have people who understand and you don't ever have to go through this alone again.

Ask your doc about Imitrex injections. They work fast to abort and is a good thing to have handy before you report the weather. There is an "imitrex tip" on the left hand side, it is well worth to read this.

You hang in there.

Title: Re: Time For a Proper First Post & Hello
Post by LeLimey on Jun 29^th, 2006, 4:21am

Hi Doug!
Nice to meet you but I'm sorry its here.

Can I ask how long you have had your tank of O2? Is it a new one or an old one? May be worth getting a refill if it's been sitting around.

I'd also recommend a new mask, you are using a non rebreather mask right aren't you? The ones with the bag that fills with air? O2 isn't nearly as effective with any other type of mask.

Getting on it at the first sign of a hit is also the best way to use O2, the longer you leave it the more entrenched the bugger gets.

I would highly recommend a clustermasx. (http://clustermasx.com) I swear by mine (but never AT it!) and I can abort in as little as 5-7 minutes with it.

Another tip is always stay on the o2 for another five minutes or so gradually reducing the LPM as this does seem to help me prevent the bugger coming back. I think it just makes the transition from pure o2 to common old air a little easier.

I hope this helps, stick around, we'll do all we can to help and support you
Helen

Title: Re: Time For a Proper First Post & Hello
Post by Weatherman on Jun 29^th, 2006, 11:22am

"Ask your doc about Imitrex injections. They work fast to abort and is a good thing to have handy before you report the weather. There is an "imitrex tip" on the left hand side, it is well worth to read this."

Thanks for the thought. Imitrex and I don't get along at all. My last Doc gave me some injection samples a few years ago. I was alone when I tried it and I thought I was going to die alone. I had a severe reaction to it. I have some heart issues but the Doc thought it would be ok. It wasn't. I was real close to a heart attack. Oh, and the CH never stopped either. I'd be way too scared to try that again.

Title: Re: Time For a Proper First Post & Hello
Post by Weatherman on Jun 29^th, 2006, 11:30am

on 06/29/06 at 04:21:47, LeLimey wrote:

Hi Doug!
"Can I ask how long you have had your tank of O2? Is it a new one or an old one? May be worth getting a refill if it's been sitting around."

"I'd also recommend a new mask, you are using a non rebreather mask right aren't you? The ones with the bag that fills with air? O2 isn't nearly as effective with any other type of mask."

It is an old tank and I don't have the right mask. I just ordered the correct one and now I'm going to call the O-2 company and get a new tank....Thanks!

Oh, by the way, I slept the whole night last night! I'm on day 3 of Kudzu and day 2 of Melatonin. I don't know if that had anything to do with it or if it was just a lucky night but HALLELUIAH!!

Thank You!
Doug

Title: Re: Time For a Proper First Post & Hello
Post by Sean_C on Jun 29^th, 2006, 4:09pm

Thats our boy on the far right ;;D

http://www.fox30online.com/images/fox_weather_mast.jpg

Welcome Doug, lots of great people here, and all know YOUR pain my friend.

I read your introduction and I don't think I could hold my composure during an attack during taping, you must be very disaplined :)

Lots of good info here and help if you need it.

Keep the faith bro,

Sean.............................

Title: Re: Time For a Proper First Post & Hello
Post by catlind on Jun 29^th, 2006, 11:32pm

Doug,

Glad you found us. You're story is much the same as the rest of us here. Sorry you had reason to seek us out, but you'll find it's an interesting family here ;)

Now, my hubby is a meteorologist, 22 years in the AF and still active duty. I am a stay at home mom and have had these horrid things in full force since 2000. 2 known episodes prior to that and was labelled chronic in 2003/2004. I am chair of the advocacy team and sitting board of director for OUCH (Organization for Understanding Cluster Headaches). Click the link on the left and check out the site. We are a non-profit dedicated to research and support for clusterheads.

Now comes the punch ;) You work for a TV station and we need media coverage. Check out the OUCH site and then email me at advocacy@ouch-us.com or use any of the emails on the OUCH site if you think you might be able to help out either with connections for media or just to volunteer to help out others. There are several sufferers in the Florida area so spend some time checking out ch.com and OUCH and hopefully you'll get to meet a few fellow clusterheads.

The annual OUCH Convention is being held in Milwaukee July 13-16. If you can make it up there it would be a great opportunity to meet other sufferers and hear some wonderful speakers that will be talking about research and what is new in the world of clusters.

Hope you find some things that help you out, this place is addicting and becomes a second family for many many people.

PFDAN (pain free days and nights)

Cat

Title: Re: Time For a Proper First Post & Hello
Post by Weatherman on Jun 30^th, 2006, 12:00am

Thanks Cat. I will check it out and get back to you. Can't make the convention unfortunately. Leaving town during hurricane season in Florida is pretty much a pipe dream.

Oh, by the way....Sean?...thanks for putting my ugly mug on the board! I sure fit the bill. Blond hair, hazel eyes, round face, ex smoker....all features I hear are common among CH sufferers.

Title: Re: Time For a Proper First Post & Hello
Post by georgej on Jun 30^th, 2006, 1:12am

Welcome, Weatherman--

Glad you've joined the site. Although I haven't been "outed" for long, I've monitored this place for six years. Best group of people you'll ever deal with, and more good information here than anywhere I've seen. It's a pleasure to make your acquaintance.

Best,

George