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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Wow I had no idea!
        
(Message started by: artemis on Nov 10^th, 2006, 1:09pm)

Title: Wow I had no idea!
Post by artemis on Nov 10^th, 2006, 1:09pm

There are so many of us! Thank God for whoever started this message board. I guess I need to tell you about me. I started having these killer headaches about 10 years ago. Doctor said it was hormones, so took me off birth control pills. Then they said it was a sinus infection, so they put me on anti-biotics. then they said it was eye problems-so i had my eyes tested-then they said it was stress so they taught me biofeedback-then they said it was migraines-but before they could give me anything the headaches stopped. Next time, about 2 years later, when the "beast" returned they sent me to a neurologist who did all sorts tests and said "classic cluster headache presentation except you're a female, and women don't usually get cluster headaches. But he gave me calan and a taper of prednisone. Soon as the prednisone stopped the headaches started again so they gave me cafergot. which didn't do anything. They kept trying to give me pain pills but they didn't work so I didn't take them.
Anyway, sorry such a long story-thanks for listening. And for being here. And I've been reading the board alot-we even have a doctor here!!!
Oh yeah, I do have oxygen but it doesn't work very good for me-I read all the tips and tried and it still works while I'm using it but the headache comes back almost right away when I stop.
pfdan
artemis

Title: Re: Wow I had no idea!
Post by echo on Nov 10^th, 2006, 5:07pm

Welcome to this family of suffers and supporters. Not surprising that you've run the gamit with the docs and neuros. Irritating as hell when a neuro says it can't be CH because you're female.

You'll find the med combo platter that works for you. Like you, O2 didn't do it for me either, and if you're like me the pred blew you up like a blow fish.

BTW: DJ is the one responsible for bringing this site to life and giving us an opportunity to gain a greater understanding of this animal, and meet others dealing iwth the same thing.

Title: Re: Wow I had no idea!
Post by tanner on Nov 10^th, 2006, 5:25pm

I will give the standard (but very true) line.

Sorry you had to join us here, but happy you found us. You seem to know some of the ropes already which is great. Keep reading and asking ?s. There are some real "rocket scientist" types here and I'm sure that more qualified heads than I will be able to point you in many helpful directions.

All the best....Tim

Title: Re: Wow I had no idea!
Post by artemis on Nov 10^th, 2006, 8:18pm

Thanks for the welcome. Ummm, :-[ I accidently wandered into the "general" area. I must be some sort of loser cause I'm having trouble keeping it all together-kids, husband, not being able to work, trying to find out about these headaches, and dealing with the pain. I don't know how you guys have time to post jokes and go to conferences and -okay for instance there's this lady who is a doctor, and her husband has really bad headaches-and alot of other stuff, and she has two kids and she still takes the time to be here alot. I must be really defective or something. But I don't think I'll go back down there anytime soon. I am awed by you guys.
Here I am dragging butt, trying to keep it together...
maybe I'll learn something huh?
artemis

Title: Re: Wow I had no idea!
Post by cynjeep89 on Nov 10^th, 2006, 9:00pm

Artemis....you are not defective! You are just trying to do your best with the worst pain so cut yourself a break and quit putting so much pressure on yourself.

Title: Re: Wow I had no idea!
Post by Bill_G. on Nov 11^th, 2006, 6:21am

You are not any kind of a fool or any thing like that. You just haven't been around here long enough to learn the tricks of the trade that work for you. Remember that you are only one person and can do only so much.
I'm sure that you will find ways to make your life easier if you just give us a chance

Wishes for PFDAN to you
Bill

Title: Re: Wow I had no idea!
Post by E-Double on Nov 11^th, 2006, 6:30am

Breathe!!!!!

once you learn to deal with the anxiety that is evoked from this disorder you will learn how to cope with the pain much better.

Honestly, the trick is pretty simple.
Find it deep w/in to live in between attacks.

Breathe!!!

Period.........end of sentence ;)

Title: Re: Wow I had no idea!
Post by LeLimey on Nov 11^th, 2006, 6:32am

Artemis some of us are chronic and we've learned that all we can do is keep going - its not easy but it becomes a habit. Others have been here longer and the support is in my opinion the greatest weapon we'll ever have. Knowing others can and do fight it gives me the strength to stick my chin out and get on with it.
You've only just got here, it takes time to benefit from all we have to offer but we can and will help you every step of the way :)

BTW BillG, I'd just like to say how impressed I am by you, a newbie yourself jumping right in and trying to help others, thats the kind of spirit I really admire and I'm very glad you're here - THANK YOU!

Helen

Title: Re: Wow I had no idea!
Post by Richr8 on Nov 11^th, 2006, 11:14am

Hi Artemis,

Welcome aboard this shipwreck.
Finding this place and being here is the only good thing that has ever come of CH for me. The rest is all trial and error with varying degrees of success. Im regards to Doctors, they don't have the answers either, but find a good neuro that is willing to listen and work with you in your quest for relief.
I personally get great relief from Oxygen and have tried most of the meds you will find discussed here, however, none that I can highly recommend. Triptans drive me into rebounds and prednisone has too many serious side effects that become worse with age, etc.
This year I have switched to an alternative approach and so far the jury is still out. I have been shadowing daily since I started, but my cycles typically start in the Sep-Nov. time frame, but so far nothing above about a Kip 3. Although i am hopeful, I'll delay any tales of success or opinions until I am well beyond the typical time period that my cycles begin.

Best of luck to you.

Title: Re: Wow I had no idea!
Post by kcopelin on Nov 11^th, 2006, 11:24am

Artemis,
I very strongly suggest that you stick with the top three areas and avoid the general area until you're firmly grounded and have a handle on your headaches. My hope for you is that you will get the information and tools you need to deal with this pain and live a fuller life-PM me anytime :D
Sorry you had to find us-glad you did.
PFDAN
kathy

Title: Re: Wow I had no idea!
Post by thebbz on Nov 11^th, 2006, 11:59am

Welcome, and like Eric said...breathe.
Read read and read some more. We like questions.
Dont be frustrated by all the drug therapies. Your going through what we all have. Soon you will be all knowing and have something that works for you. Stay away from anything that makes you drousy.(pain killers)
all the best
jb
02 02 02

Title: Re: Wow I had no idea!
Post by Kevin_M on Nov 11^th, 2006, 9:15pm

on 11/11/06 at 11:24:53, kcopelin wrote:

I very strongly suggest that you stick with the top three areas and avoid the general area until you're firmly grounded and have a handle on your headaches.

This seems a very strange piece of advice to a new sufferer. I've never seen suggested prerequisites to a sufferer for access to support on this site.

Title: Re: Wow I had no idea!
Post by Guiseppi on Nov 11^th, 2006, 9:24pm

This worked for me, hopefully you haven't thrown away your cafergot!!!!!

The cafergot pills didn't help me cuz they took too long to get into my system, the headache was already wailing me.

The oxygen worked but 10 minutes after I stopped the oxygen the pain was back.

Now as soon as the headache starts, I pop a cafergot, and start the oxygen. The oxygen stops the headache long enough for the cafergot to load up. When the oxygen stops, the cafergot keeps the beast away. Worth a shot, the cafergot makes you a little edgy and makes your mouth taste funny, but no other side affects. I really hope it helps you and welcome aboard.

Guiseppi

Title: Re: Wow I had no idea!
Post by chewy on Nov 12^th, 2006, 7:45am

Quote:

okay for instance there's this lady who is a doctor, and her husband has really bad headaches-and alot of other stuff, and she has two kids and she still takes the time to be here alot.

Awesome isn't it?

Title: Re: Wow I had no idea!
Post by kayarr on Nov 12^th, 2006, 10:50am

on 11/10/06 at 20:18:46, artemis wrote:

Heavens, keep reading.........There are plenty of examples of how human we all are around here.

My clusterhead and I have no children at home right now. (they be growed up:) At this point I make enough to get us by so he can look for something that will adapt better to his headaches w/o the stress. (he had a heart attack a couple years ago)
He gets depressed sometimes still (chronic 12 years) I feel put upon sometimes. It is all about doing the best you can with what you have. Bend with the wind man!

Kimberly

Title: Re: Wow I had no idea!
Post by artemis on Nov 12^th, 2006, 12:46pm

i tired the cafergot first then the ooxygn and it worked alot better. thanks. there's so much to learn about here. i also had prayer today at church and i think that will help. however said the lady with the kids and all that was awesome is right. and thankyou for sending me those notes, i saw i had mesages and you are really nice people.
i was talking to a freind and he told the stuff about courage and all, i dont feel very brave sometimes but this place helps. thanks for being so nice and all.
jamie

iwonderd what those buttons were for-and ilike the faces :) how i feel now :'(how i feel whenmy hed hurts now what do i do

Title: Re: Wow I had no idea!
Post by Woobie on Nov 17^th, 2006, 7:20pm

Hi Artemis........

I'm woobie.

just wanted to say hi - and to hang in there.....

it gets easier - just knowing you're not the only one helps.........

smooches :-*
woobie