Author |
Topic: Delurking (Read 348 times) |
|
.wink.
Guest
|
I've been lurking on these boards for about two years now. Finally decided to sign up for an account.
I've suffered from Clusters for about five years. Back then they were pretty mild--the headaches only hit every other day and the whole cluster would be over in about two weeks. I'd get two or three clusters a year and I'd treat them with Zomig.
About two years ago, my clusters started lasting a month and the headaches would hit every day. Then the interval between clusters started getting shorter.
Now each succesive cluster is worse, either in legnth, intensity, or frequency and the intervals between clusters keeps getting shorter too.
All that to say...Hi there everybody!
(Current treatments: O2, pred, Imitrex injectables, Depakote)
|
|
 IP Logged |
|
|
|
BobG
New Board Hall of Famer
Gender: 
Posts: 5747
|
 |
Re: Delurking
« Reply #1 on: Jun 27th, 2004, 3:32am » |
 Quote  Modify
|
Hello .wink. Welcome to the board. Since you lurked for 2 years you probably already know what the place is all about. Hope to see more of you.
|
|
IP Logged |
Stay stressed. Never relax. Never sleep. Ever.
|
|
|
Superpain
New Board Hall of Famer
GOT O2!?
Gender:
Posts: 1351
|
|
Re: Delurking
« Reply #2 on: Jun 27th, 2004, 4:55am » |
Quote Modify
|
The shy yet edumacated type. 
Sounds like the beast is starting to take a liking to you. 
How long on the current prevents and how are they doing?
|
|
IP Logged |
Chris
|
|
|
.wink.
Guest
|
Got an unwelcome wakeup call and am currently sucking down some O2. Sigh.
I've been using pred with each new episode for about a year now. Works pretty well for me--it reduces frequency and intensity. But I get mega-hungry and it makes my knees hurt.
I only started taking Depakote about three weeks ago. Too early to tell if it is really working. I thought that it was working as last week I was mostly PF, but that may have just been the natural course of the episode dying down. In the past four days I've gotten headaches (each day worse than the last), so I suspect that I'm heading into a new episode. (I'll be really pissed if that's the case b/c that means that I only got one weeks rest between episodes!) If that's the case, then maybe the Depakote isn't working so well for me. But it is probably too early to tell. (I'll talk to my doc about it soon.)
|
|
IP Logged |
|
|
|
Little Deb
New Board Hall of Famer
Please SPAY and NEUTER all dogs, cats and idiots!
 
Gender: 
Posts: 1346
|
|
Re: Delurking
« Reply #4 on: Jun 27th, 2004, 10:34am » |
Quote Modify
|
Welcome Wink......
Glad to have you in our company. Of course, wish it were under different circumstances.
Big Hugs...............Little Deb
|
|
IP Logged |
Adopt a shelter pet!
|
|
|
Superpain
New Board Hall of Famer
GOT O2!?
Gender:
Posts: 1351
|
|
Re: Delurking
« Reply #5 on: Jun 28th, 2004, 3:13pm » |
Quote Modify
|
So how many pred tapers have you done this year?
|
|
IP Logged |
Chris
|
|
|
Filbert
New Board Veteran
"Gravy-pure gravy and don't forget it."
Gender:
Posts: 241
|
|
Re: Delurking
« Reply #6 on: Jun 28th, 2004, 3:32pm » |
Quote Modify
|
Chris it seems Wink has returned to Lurkdom 
Filbert
|
|
IP Logged |
|
|
|
Superpain
New Board Hall of Famer
GOT O2!?
Gender:
Posts: 1351
|
|
Re: Delurking
« Reply #7 on: Jun 28th, 2004, 4:05pm » |
Quote Modify
|
Lurk on... Lurk off...
Didn't your momma tell you lurking off will make you go blind!?
|
|
IP Logged |
Chris
|
|
|
wink
New Board Newbie
;)
Posts: 15
|
|
Re: Delurking
« Reply #8 on: Jun 28th, 2004, 6:05pm » |
Quote Modify
|
I'm here, I'm here...just taking care of my 11 month old, so I can't be at the computer all the time. I love being a stay-at-home-dad, but it certainly cuts in on my surfing.
I've done three pred tapers this year. I think I'm going on my fourth episode, but I havn't gone on pred for it yet. I keep hoping that the Depakote will take care of it for me.
(I still need to talk to my Doc. Hopefully I'll get to it this afternoon.)
(Note: I got my username and name info straightened out so I don't need the periods in front of and behond my name anymore. Thank you Mr. Board Admin!)
|
|
IP Logged |
|
|
|
Superpain
New Board Hall of Famer
GOT O2!?
Gender:
Posts: 1351
|
|
Re: Delurking
« Reply #9 on: Jun 28th, 2004, 8:14pm » |
Quote Modify
|
Sounds to me like you're going chronic.
That's alot of prednisone... It can't be healthy.
Alot of chronics get relief with verapamil and lithium.
|
|
IP Logged |
Chris
|
|
|
Filbert
New Board Veteran
"Gravy-pure gravy and don't forget it."
Gender:
Posts: 241
|
|
Re: Delurking
« Reply #10 on: Jun 28th, 2004, 8:47pm » |
Quote Modify
|
Wink- sorry I thought you'd left us and good luck with your childcare. Have three youngsters myself so now how much of a juggliing act it can be, Agree with Superpain that's a lot of steroids in a one year period!
All the best Filbert.
|
|
IP Logged |
|
|
|
don
Guest
|
I'm probably the biggest advocate of the prednisone around here simply because it works pretty well for me but three times in one year would indicate to me that I should seek another route.
It does sound like your heading down Chronic Blvd and the verap. and lithium combo seems to be a God send for the chronics.
|
|
IP Logged |
|
|
|
wink
New Board Newbie
;)
Posts: 15
|
|
Re: Delurking
« Reply #12 on: Jun 29th, 2004, 1:37am » |
Quote Modify
|
Clarification: that would be three pred tapers in the past 12 months. Only two so far in the 2004 calendar year.
Yeah, it seems like a lot of pred to me to, but it largely works while I'm on it. It just doesn't last forever.
My big worry is that I'm on the road to becoming chronic. Looks like some of you have picked up on that too.
My doc wants to try a couple of other things first before verap and lithium. I'm more than happy to give whatever he suggests a try. He's been very good so far even if we haven't yet hit on the correct treatment for me.
|
|
IP Logged |
|
|
|
Woobie
CH.com Alumnus
New Board Hall of Famer
I luv you guys!!!!!!!!
Gender:
Posts: 3800
|
|
Re: Delurking
« Reply #13 on: Jul 4th, 2004, 7:36pm » |
Quote Modify
|
Hey Wink...
Nice to meet you....
Just wanted to say hi.
Tina 
|
|
IP Logged |
|
|
|
Superpain
New Board Hall of Famer
GOT O2!?
Gender:
Posts: 1351
|
|
Re: Delurking
« Reply #14 on: Jul 8th, 2004, 6:18am » |
Quote Modify
|
Well... At least you quit lurking off. 
|
|
IP Logged |
Chris
|
|
|
911please
New Board Newbie
better to be pissed off, than pissed on...I think
Gender:
Posts: 22
|
|
Re: Delurking
« Reply #15 on: Jul 9th, 2004, 4:20pm » |
Quote Modify
|
I seem to find lurking off at the end of an encouter with the beast helps me to sleep. btw the wife likes it too..
Doug..
the clusters make me blind in one eye so I have no worries.. 
|
| « Last Edit: Jul 9th, 2004, 4:21pm by 911please » |
IP Logged |
|
|
|
alleyoop
New Board Hall of Famer
Wake me up when it's all over.
Gender:
Posts: 1143
|
|
Re: Delurking
« Reply #16 on: Jul 12th, 2004, 8:41pm » |
Quote Modify
|
Hey Wink,
From one ex-lurker to another, "Welcome!"
I've got to agree with you and the rest in that it does sound like you're going chronic. I'm a diagnosed chronic, myself. But it looks like I just may fall out of that classification. If I make it through today without getting hit, it'll make 23 days PF! I have been on lithium and verapamil for several years now. But if I had to say it was one thing that contributed to my recent success, it's the fact that after going over and over these boards, I adjusted my dosages. That's about all I can say. So far, it's worked for me!
Three pred tapers in 12 mos does seem to be pushing it. Other than that, sounds like you've got a good neuro.
Good luck and hope we're wrong about you going chronic.
......................................alley
|
|
IP Logged |
I know that the Good Lord won't put any more on you than you can stand, but sometimes I wish He weren't quite so PROUD of ME!
|
|
|
Prense
CH.com Alumnus
New Board Hall of Famer
Kerry is an idiot!
Gender:
Posts: 1607
|
|
Re: Delurking
« Reply #17 on: Jul 12th, 2004, 8:53pm » |
Quote Modify
|
on Jul 12th, 2004, 8:41pm, alleyoop wrote:| I'm a diagnosed chronic, myself. But it looks like I just may fall out of that classification. If I make it through today without getting hit, it'll make 23 days PF! I have been on lithium and verapamil for several years now. |
|
You gotta be unmedicated to meet that definition I do believe. I hope like hell you are getting booted from chronic's anonymous though!
Chris
|
|
IP Logged |
Where does the white go in a snowman when the snow melts?
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
Remove
test rss