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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Another Newbie

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Another Newbie (Read 1393 times)

Fred

CH.com Newbie

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I Love CH.com!

Posts: 6
Las Vegas, NV
Gender: male

Another Newbie
Dec 4^th, 2009 at 9:23pm

Hi all,
Fred is the name, have been suffering with ch for about 12yrs but just diag 3 yrs ago. MD and Neuro both concur, so am accepting it. Have tried the massive pred taper, worked 1st time but not this cycle I'm in now. O2 is the BEST, kills it in 5-10 min. Am also on Lithium, have varied from 300 to 900 mg a day, but don't see any positive's in it yet. Some jitters, lots of potty trips.
Sure am glad I found this place, I thought I really was going out of my mind before. Thanks to all of you for a great site

Mom always said life was a bowl of cherries, she didn't tell me it was the pits.

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Dallas Denny 62

CH.com Old Timer

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Semper Fi !!!!

Posts: 295
Island Bayou Mushroom Farm
Gender: male

Re: Another Newbie
Reply #1 - Dec 4^th, 2009 at 9:38pm

Welcome home Fred!! Sorry ya needed to find us though.
Sounds like you pretty much got your ducks in a row with prevents and abortives so you're a big step up on a lot of the newbies that show up on the board. Theres lots to read and a bunch of folks will be along to say hi. You have just run into the nicest group of people you could ever want to meet and EACH and everyone of them is going to know exactly what you are going thru with CH!!

Wishin you some PF time soon

Dallas Denny

I am lost and have gone to find myself....if you should see me before I get back....please ask me to wait until I return!!

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coach_bill CH.com Hall of Famer Offline "Dont expect me to lay down for this" Posts: 680 x0\|euclid\|USA\|\|0\|0\|OH,Ohio Gender:	Re: Another Newbie Reply #2 - Dec 4^th, 2009 at 10:18pm Welcome, You will learn so much here, Just take it all in. Bill
Back to top	boy i cant wait till it's my turn to give him a headache. paybacks a bitch IP Logged

Joni CH.com Old Timer Offline Knowledge is Power Posts: 476 Gender:	Re: Another Newbie Reply #3 - Dec 4^th, 2009 at 11:51pm Welcome!
Back to top	Experience: That most brutal of teachers. But you learn, my God do you learn. -C. S. Lewis IP Logged

LeLimey

Ex Member

Re: Another Newbie
Reply #4 - Dec 5^th, 2009 at 4:16am

Hi Fred - How's Wilma?!

There's always one in every family - in this one it's me!

Welcome, I'm glad you found us.

You mentioned a massive pred taper and how it didn't work. Pred is a funny beast and sometimes you need to vary the dosage or tapering rate slightly. It's a good tool but one with definite draw backs too. A real double edged sword for us ch'ers. Also, did you taper the pred while tapering off on some other drug such as the lithium or verapamil? Pred without back up is going to be of very short term help in any case.

You mention you're not too impressed with lithium too. A lot of people here have found limited effect with either verap or lithium but have found when combining the two it's immensely effective. That could be well worth it for you especially given you are already on the lithium. (Oh and as a side note - because somehow conversations ALWAYS end up here... the verap will fix those potty trips too! )

I'm glad you have O2! I consider it the best abortive possible. 5-7 minutes at 15 LPM for me.

I'm glad you finally found us! What is it with you guys sheesh?! Its so true about you lot and asking directions!

Helen

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Guiseppi

CH.com Moderator
CH.com Alumnus

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San Diego to Florida 05-16-2011

Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male

Re: Another Newbie
Reply #5 - Dec 5^th, 2009 at 11:36am

SOOOO glad you have a doctor knowledgeable enough to give you oxygen. It's been a life saver for me and many on the board. Prednisone is funny, for some it breaks a cycle for some it just works as a block as long as you're on it, but the attacks are back as soon as you go off!

Be patient with lithium. I use 1200 mg a day while on cycle, but get almost no benefit for the first 10-14 days. It seems to take almost 2 weeks for it to build up in my system and work as an effective prevent. For me it blocks about 70% of my attacks, 02 kills most of those. I assume you're getting blood work while you are figuring out the lithium doseage. And yeah, you do spend a lot of time in the "Loo" the first few weeks you're on it. That annoying side effect fades away after the first 2 weeks!

Joe

"Somebody had to say it" is usually a piss poor excuse to be mean.

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remission lover CH.com Junior Offline You're messin with the wrong girl...I'm a fighter! Posts: 57 Lansing, Michigan Gender:	Re: Another Newbie Reply #6 - Dec 5^th, 2009 at 2:57pm Just wanted to jump on the welcome wagon. Just found this place myself less than a month ago and absolutely love everyone here. Were like family already. You'll feel the same soon. More info here between the links and the people as real live trial and error than you can shake a stick at so get ready for the ride!
Back to top	Grandma always said "this too shall pass". But then again she didn't have ch so she didn't think to say "this too shall come again (and again) at the most inconvenient times". IP Logged

BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: Another Newbie Reply #7 - Dec 6^th, 2009 at 6:03am Welcome Fred.... stick around and you'll be getting some great advice... O2 is great for most of us (about 70% of us swear by it). Be sure you have the RIGHT MASK -- read the O2 info on the left and be SURE you're doing it right... Again WELCOME to Clusterville.... and to our little family... Hugs BD
Back to top	What don't kill ya, Makes ya stronger! IP Logged

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