Click this link to read a post I like on the clusterheadaches.com message board...

Timelost

CH.com Newbie

Offline

I Love CH.com!

Posts: 4

Hello... new to this site
Mar 1^st, 2009 at 5:04pm

Hi everyone, I'm 52, married with grown kids and have had Ch for 15 years, diagnosed correctly though just nine years ago. I fall into that group that has Ch year round; they started out just in the fall but about three years ago I just never hit a reprieve period. I take Verapamil along with anti depressantsand very cautiously take Stadol whern I have to keep working. This is the first time I ever joined a group online but I learn quickly. My circadian rhythm seems to be shot anymore, I will go days without sleep, get hungry at 4:00AM and I have a problem controling my bodys own heating, where I overheat most of the time. Hence the name Timelost for all of the moments in life stolen by these CH. Thanks everyone for being here!!
Rick Roll Eyes

Back to top

IP Logged

Click Here to visit the CH.com Facebook page!

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: Hello... new to this site Reply #1 - Mar 1^st, 2009 at 5:28pm Hello You should have made your name "Timesnatcher" Because thats what happens when you take one back from the beast. Thats the thought around here mostly, So get used to it. Coach Bill
Back to top	boy i cant wait till it's my turn to give him a headache. paybacks a bitch IP Logged

Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: Hello... new to this site Reply #2 - Mar 1^st, 2009 at 6:57pm Glad you found us. Anything, in particular, you need? Information....?
Back to top	Bob Johnson IP Logged

Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Hello... new to this site Reply #3 - Mar 1^st, 2009 at 6:59pm Time to get you on the oxygen regimen!! I'm 49, been battling it for about 30 years. Oxygen is still my primary and most effective abortive. Read the 02 link on the left and talk with your doc about it. Glad you found us, hang in there! Joe
Back to top	"Somebody had to say it" is usually a piss poor excuse to be mean. IP Logged

Timelost

CH.com Newbie

Offline

I Love CH.com!

Posts: 4

Re: Hello... new to this site
Reply #4 - Mar 1^st, 2009 at 7:21pm

Hi Joe,
Thanks for the feedback; I actually started out on O2 till it was no longer effective as my Ch got worse and more frequent. I did not want to have to take any drugs if possible so my Dr. and I proceeded cautiously with my treatment. I still take the Verapamil but no longer take the Imitrex. I used the stat dose just twice a week even though I was having CH everyday. I still ended up with rebound headaches that only a sufferer can know how bad that pain is. I have sleep apnea and have a CPAP that helps some, and I am going to the headache center at the Cleveland Clinic this Friday. The freeness to support and share from this site I believe will be a big help to me, just finding someone who really knows what the CH are like and that others are there to support one another is huge in fighting back.
Thanks again and take care!
Rick

Back to top

IP Logged

Marc Ex Member Gender:	Re: Hello... new to this site Reply #5 - Mar 2^nd, 2009 at 12:32am Rick, I don't want to make any assumptions, but I was a guy who said that O2 didn't really work for me - until I discovered really high flow rates. It literally changed my life. If you haven't tried O2 at 25 LPM or higher with a GOOD mask, I would urge you to revisit it. Good luck. Marc
Back to top	IP Logged

Timelost

CH.com Newbie

Offline

I Love CH.com!

Posts: 4

Re: Hello... new to this site
Reply #6 - Mar 3^rd, 2009 at 7:51pm

Hello Marc,
the one thing for sure is that with enough of us posting help & support we can definitely help one another. I did start off at 15 and work my way up; but at that time my CH went from seasonal to cronic and pretty aggressively. I'm hoping that when I go to the Dr. this friday to the CCF Headaches Center there will be more options open to me. I'll certainly post how that appointment goes, it can only get better! Thanks again for the suggestion and I'll run that by my new Dr.

Rick

Back to top

IP Logged

Linda_Howell

CH.com Moderator
CH.com Alumnus

Offline

Do not feed the Moderators

Posts: 11927
Santa Maria, Ca.
Gender: female

Re: Hello... new to this site
Reply #7 - Mar 3^rd, 2009 at 9:03pm

Hello Rick and welcome.

Go to this link, second item down and purchase it. It will be the best 28.00 dollars you ever spent.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Even WITH a high-flow regulator, you need to have the proper mask.

Sounds to me like you are chronic. I've been so almost from the start. 22 years ago. There is hope. I can control mine and you can too.

Linda

Back to top

Hurt people.....hurt people. Think about it.

IP Logged

Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Hello... new to this site Reply #8 - Mar 3^rd, 2009 at 11:45pm Be praying the appointment goes well. Good luck! Joe
Back to top	"Somebody had to say it" is usually a piss poor excuse to be mean. IP Logged

Click Here to visit the CH.com Facebook page!

Skyhawk5

CH.com Alumnus

Offline

I love YaBB 1G - SP1!

Posts: 1320
Ypsilanti, Mi. USA
Gender: male

Re: Hello... new to this site
Reply #9 - Mar 4^th, 2009 at 1:47am

Rick, Welcome to CH.com.

Are you aware of the modern use of Oxygen? From your post's it appears you may have used it before the days of 15 and above LPM regulators for CH.

For a good 70% of us Oxygen is the number one abortive tool. People like me that have tried 30+ drugs, including Stadol, find it the best abortive we have for over 90% of our hits. Have you used it with a NON-REBREATHER mask (the one with a bag)? Nasal canulas are considered worthless for CH.....

Forgive me if you are aware of this, but if not, you owe it to yourself to update your O2 knowledge. You only have pain to lose.

Don

Back to top

Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

IP Logged

	Welcome, Guest. Please Login or Register
	Search box updated Dec 3, 2011... Search ch.com with Google!