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        Cluster Headache Help and Support >> Getting to Know Ya >> I feel like I have discovered gold!
        
(Message started by: chuckv on Jan 30^th, 2008, 1:16pm)

Title: I feel like I have discovered gold!
Post by chuckv on Jan 30^th, 2008, 1:16pm

I just discovered this wonderful site yesterday and spent the whole day browsing around the different topics and information. I can't believe I have found a site with so much support and information.

I will be 50 in 4 days and I have been clustering since February of 06.
I originally thought it was sever sinus headaches. (Okay, very severe)
I went to my ENT and he said my sinuses were fine but thanks to his quick thinking, he suggested it mught be cluster headaches and referred me to a wonderful Neurologist.

Although I have found nothing to prevent them, I have been able to calm the attacks down with Zomig.
I had a bad expereince with imitex that ended up in an ER visit.

I have a wonderful support person in my wife and although she doesn't fully understand the pain, she at least gives me the support I need.

She too is learning more with the information on this site.

I am already making plans for Dallas in July and look forward to a long association with the rest of my cluster heads.

Thank You!

Chuck

Title: Re: I feel like I have discovered gold!
Post by artonio7 on Jan 30^th, 2008, 1:22pm

Welcome home Chuck!

It's a kick in the ole rubber parts that you have to be here... but you found the best place to be. Soon others will be around to welcome you.

stick around... you're part of the family.

with warm regards,
Tony

Title: Re: I feel like I have discovered gold!
Post by vietvet2tours on Jan 30^th, 2008, 1:42pm

Oxygen is your friend and a mighty fine weapon.

Potter

Title: Re: I feel like I have discovered gold!
Post by DennisM1045 on Jan 30^th, 2008, 1:43pm

Welcome to the family Chuck! I'm so sorry to hear we are related.

As you've already seen, there are many helpful folks around here. I found this place last June after suffering for 12 years without even a diagnosis. You are luck to have been dx'd so quickly.

My main abortive is Oxygen with energy drinks, strong coffee and my last resort is Imitrex injections (I see they won't work for you).

Anyway, you have a lot of reading to do. So settle in and lets see if we can't help each other.

-Dennis-

Title: Re: I feel like I have discovered gold!
Post by chuckv on Jan 30^th, 2008, 1:51pm

Thanks for the warm welcome from my new family! :)

Title: Re: I feel like I have discovered gold!
Post by Guiseppi on Jan 30^th, 2008, 1:54pm

Another strong vote for oxygen here! I'm 48, about 30 years of dancing with the beast and 02 is still my first line abortive!

Welcome to the board, I hope to be at Dallas also. Meeting with a bunch of cluster nuts is an experience unlike any other. You won't find a more beautiful giving group of people in your lifetime. Welcome home!

Guiseppi

Title: Re: I feel like I have discovered gold!
Post by chuckv on Jan 30^th, 2008, 2:18pm

I am working on the script for Oxygen from mt Neurologist. He suggested it too.
I had not heard of the energy drink idea. Do you drink one when you feel it coming on?
Coffee too? I love coffee!

Title: Re: I feel like I have discovered gold!
Post by RichardN on Jan 30^th, 2008, 2:30pm

Hi Chuck . . . Welcome to Clusterville

And yup, you've hit the motherlode of CH info/caring/sharing. I'll be 61 in Mar., CH since 1/01 . . . here since 2/02 . . . . was a basket-case when I got here . . . this site and these folks gave me my life back, and why we refer to it and them as "home" and "family".

I can't use Imitrex either (some artery blockage and high cholesterol . . . . . your problem too?), so 02 is my only abortive . . . can usually kill him in minutes if used early-on in the attack. Please let us know if you have this available yet.

Also . . . advise us what other meds you are on and whether they are working for you. For me, it was Verapamil that finally gave me my first PF day in over a year . . . dosage varies for different folks.

Please read the thread started by K-MAN . . . Variation on Water Therapy . . . on the Medications/Therapies board . . . might be worth trying.

Also, if your wife would like to chat with other supporters who UNDERSTAND what she goes through . . . the Supporters Board might be very helpful for her.

Very glad you found us . . . Welcome Home

Be Safe, PFDANs

Richard

Title: Re: I feel like I have discovered gold!
Post by DennisM1045 on Jan 30^th, 2008, 2:40pm

For me O2 can knock the beast down but he doesn't always stay in his cage. Back up the O2 with an energy drink and I'm usually good to go.

You slam it down as fast as possible right before getting on the O2.

-Dennis-

Title: Re: I feel like I have discovered gold!
Post by RichardN on Jan 30^th, 2008, 2:41pm

TIME TO BUY SOME LOTTERY TICKETS!

Not only are you lucky enough to have found us, but extremely lucky to have a neuro who's suggesting 02 right away. Tell him he's welcome here too.

Do make sure your script specifies 15 lpm regulator and non-rebreather mask (the one with the bag). Let us know when you get it and we can walk you through the use of same.

Yes, definitely coffee as soon as you feel him coming. The energy drinks preferred are the ones that contain both caffeine and taurine.

Get the lottery ticket ;)

Be Safe,

Richard

Title: Re: I feel like I have discovered gold!
Post by Ray on Jan 30^th, 2008, 4:55pm

Welcome Chuck:

You've been given good advice so far! Welcome to the family.

Ray

Title: Re: I feel like I have discovered gold!
Post by chuckv on Jan 30^th, 2008, 7:01pm

Thanks for all the great advice. I am out of remission right now and had one of my worst attacks lst night.
I went out and bought a red bull to see if that works for me tonight.

I know it's coming, just don't know what time.

Title: Re: I feel like I have discovered gold!
Post by George_J on Jan 30^th, 2008, 11:49pm

Welcome, Chuck.

You've gotten some very good advice thusfar, and I really have nothing to add at this point. Just wanted to say "hello", and welcome to the nuthouse. ;)

Best wishes,

George

Title: Re: I feel like I have discovered gold!
Post by hotprestwich on Jan 31^st, 2008, 11:59am

sorry your here, but welcome to ya new home,
ts great when you know your not alone,
i use coffee and 02 they help me live sanely
how long do your cycles last?

Title: Re: I feel like I have discovered gold!
Post by billlmack on Jan 31^st, 2008, 11:22pm

welcom Clusterhead
your home

Title: Re: I feel like I have discovered gold!
Post by chuckv on Feb 1^st, 2008, 10:21am

My Oxygen is coming today!
I'm excited to get to try it.
My cycles usually last about 6 weeks but they have not been consistent lately.

Title: Re: I feel like I have discovered gold!
Post by DennisM1045 on Feb 1^st, 2008, 12:58pm

It one thing consistent about the beast is that he is inconsistent :-/

Let us know how the O2 goes.

-Dennis-

Title: Re: I feel like I have discovered gold!
Post by imfareware on Feb 1^st, 2008, 2:44pm

Hello, I hope that you know how to manage the CH's. I've had mine since 86, just about every year to the month they come. Life goes on, they dont last forever!

Title: Re: I feel like I have discovered gold!
Post by PollyPocket on Feb 1^st, 2008, 4:12pm

Hi Chuck, welcome ~~to the loonybin~~ home. Glad you found us, though sorry you had to.

I'm so happy for you that you got the o2 so quickly- sounds like you found a great neuro. Stick around and you'll be amazed at how much you'll learn (yep, the motherload of info as Richard said) and how much support you and your wife will get here.

Welcome to the family!
Jen

Title: Re: I feel like I have discovered gold!
Post by BarbaraD on Feb 2^nd, 2008, 5:32pm

Welcome Chuck

O2 is great for aborting as are the energy drinks and coffee. I've been known to try to suck O2 and drink coffee at the same time, but I'm a little weird (and no one will argue that point!)

One other thing and I don't think it's been mentioned yet is Melatonin before bed... 9-15mg before bed. It gets you thru the REM sleep and helps prevent the night hits. Some folks here say it works for them on the first dose -- took me about two weeks before it began to work, but I swear by it now. Rarely get hit at night anymore. It's OTC stuff, but I swear by it.

Sounds like your neuro knows his stuff.

I can't take trex either, but keep Cafergot for those 10s that nothing else gets rid of. It's an old vaso-consitrictor (ergotomine), but doesn't have the side effects that imitrex had (at least for me). You might mention it to your neuro and see what he thinks about that - just as a standby.

We have a great support team here (I think they get off in the corner and talk about us :D - ok, I'm joking - what they go thru they're all up for sainthood in my book.) Tell your wife to get on the board with them. Supporters need support also.

And for goodness sakes (and I didn't look at where you live) don't miss an opportunity to MEET another CHer in person. It's something that can't be explained even after you do it. But it is an experience. Afterwards, you'll know you're NOT alone ever again. My son has never understood why I'll jump in the car on a minute's notice to go meet a "stranger" for coffee or dinner. I keep telling him, "I'm not going to meet a stranger, I'm going to meet another CHer." Never met a stranger yet and the funny part is, I've never had any trouble recognizing them in a crowded room either - strange but true. If you get a chance to meet a Cher - don't hesitate - take the opportunity and meet the guy - then you'll understand what I'm saying.

Hugs BD

Title: Re: I feel like I have discovered gold!
Post by chuckv on Feb 4^th, 2008, 10:19am

Okay, so here's the deal.
I wake up to a really bad attack on Friday night and immediatley jump to my new friend, Oxygen. After about 15 minutes, I am back in bed and resting with no drugs taken!
Unfortunately, the rebound hits about an hour later.
So, shoot the Zomig up my nose and jump back on the O2.
This time, I am headache free in about 10 minutes.
I can't believe I went without the O2 this long.
This has been a lifesaver.
After the Zomig and O2 comination, no rebound and I managed to ride out the rest of the night.

I actually went headache free on Saturday and then had anothe bad one last night. I immediately jumped on the O2 and shot the Zomig. 15 minutes later I am headache free and no rebounds.

Oxygen is my new best friend, well, along with all of you.

Thanks for all the great advice!

Kansas City is a little quieter now without me screaming so long.

Title: Re: I feel like I have discovered gold!
Post by Guiseppi on Feb 4^th, 2008, 10:23am

That is awesome!!!!!!!!

I'm like you, oxygen alone will result in the headache coming back in about 10-20 minutes. Now I pop a cafergot, and crank up the 02. 02 knocks it down, cafergot keeps him running.

So glad you've got a regimen that works. It's a powerful feeling knowing you can kick his ass when he tries to bring it! Couldn't be happier for you.

Guiseppi

Title: Re: I feel like I have discovered gold!
Post by RichardN on Feb 4^th, 2008, 8:58pm

[smiley=thumbsup.gif]

Isn't it a great feeling knowing you have at least some control over the bastard?

Be Safe, PFDANs

Richard