Author |
Topic: Hi - I'm new here, but have had CHs for 5 years (Read 282 times) |
|
nosleepy
CH.com Alumnus
New Board Newbie
  
Gender: 
Posts: 1
|
 |
Hi - I'm new here, but have had CHs for 5 years
« on: Jun 21st, 2007, 1:54am » |
 Quote  Modify
|
Hi everyone. I've just stumbled across this site, and WOW! Good advice all over the place!
I've been a CH sufferer for about 5 years now. I've had clusters that lasted longer than a year, and remissions that have been almost as long. In fact, I'm just coming off a 1 year+ spell where I had between 1 and 3 a day - almost every single day. Since I'm writing this at 1:50am, you might guess I just had one  .
I've tried most every possible approach to both avoid and eliminate headaches, and am having the most success with O2, Zomig NS (pills did nothing) and Stadol NS in the most severe situations. I also take Verapamil 360, but I'm not convinced it's helping prevent.
I'll try to stay connected to this group, because we all need some support to get through these little "blessings." Thank you to the person(s) responsible for this incredible site!
|
|
 IP Logged |
|
|
|
Ray
CH.com Alumnus
New Board Hall of Famer
Ray and Shade
 
Gender:
Posts: 1118
|
 |
Re: Hi - I'm new here, but have had CHs for 5 year
« Reply #1 on: Jun 21st, 2007, 2:03am » |
Quote Modify
|
Welcome to the family, I'm sorry for your pain. Read, ask, and we'll do our best to support you and answer your questions.
A note from my past experience, the Stadol NS turned me into a super grouch, and didn't really help much. Your milage may vary.
Wishing you PF days and nights,
Ray
|
|
IP Logged |
You have my prayers and compassion-I'm right there with you.
Dum tempus habemus, operemur bonum
*While we have the time, let us do good*
http://www.myspace.com/rayplace
http://www.shadesgarden.com
|
|
|
Guiseppi
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 2703
|
|
Re: Hi - I'm new here, but have had CHs for 5 year
« Reply #2 on: Jun 21st, 2007, 10:18am » |
Quote Modify
|
DJ is the saint who decided the world needed this site. If it's withn your means hit the pay pal button on the bottom and throw a few bucks his way, he runs all this out of his own pocket!
I'm with you on the oxygen route. Still my favorite, most effective abortive with almost nothing for side effects. Your dosage on verapamil is still relatively low compared to what I've seen others on the board use. I don't use it so take that opinion with a grain of salt!  Lithium is my prevent.
Welcome to your new second home, please stay in and out of cycle, we like the company.
Guiseppi
|
|
IP Logged |
Why are all sensors, seeking intelligent life, pointed AWAY from earth?
|
|
|
Rosybabe
CH.com Alumnus
New Board Hall of Famer
"Too much of a good thing can be wonderful!!
Gender: 
Posts: 3470
|
|
Re: Hi - I'm new here, but have had CHs for 5 year
« Reply #3 on: Jun 21st, 2007, 1:07pm » |
Quote Modify
|
Hi Nosleepy!
Welcome aboard!!!!
ask your Doc about a different preventative...maybe topamax or lithium could work. Melatonin and benadryl are other option for night hits.
Good luck and hope you have lots of pain free nights (PFN) and you get the sleep time you need.
|
|
IP Logged |
 Believing is just the beginning!
|
|
|
Sandy_C
CH.com Alumnus
New Board Hall of Famer
Burn that bra!
Gender:
Posts: 2585
|
|
Re: Hi - I'm new here, but have had CHs for 5 year
« Reply #4 on: Jun 21st, 2007, 1:33pm » |
Quote Modify
|
Welcome Nosleepy!
As you can probably already tell, you've stumbled upon the greatest website in the world for CH sufferers. There is more combined knowledge than you could ever believe. If you ask about a certain medication, you will receive responses from many who say it works wonderfully well, and others who say id didn't help them at all. But, this is KNOWLEDGE.
Welcome to the family. Ask questions, we're here.
Sandy
|
|
IP Logged |
Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on
|
|
|
Bob_Johnson
New Board Hall of Famer
Gender:
Posts: 1796
|
|
Re: Hi - I'm new here, but have had CHs for 5 year
« Reply #5 on: Jun 22nd, 2007, 7:49am » |
Quote Modify
|
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
----------
Stadol has virtually no application for CH. Your Verap dose is too low (see above article) and it takes a week or two to kick in and dosage adjustment often needed to find what works for you.
Please explore the buttons, left.
|
|
IP Logged |
Bob Johnson
|
|
|
sldrswyfe
CH.com Alumnus
New Board Hall of Famer
Member of O.U.C.H.
Gender:
Posts: 1015
|
|
Re: Hi - I'm new here, but have had CHs for 5 year
« Reply #6 on: Jun 26th, 2007, 7:05pm » |
Quote Modify
|
Im glad you found the site. At the very least you know you're not alone and have many others that really know exactly what you're going through.
Glad you found the site fairly early on in your diagnosis...I found at about thirteen and half years in.
Welcome... I hope you find a treatment that works well for you. Thoughtfully, Sherri
|
|
IP Logged |
"Great spirits have always found violent
opposition from the mediocrities." -Einstein
"I'll DIE on MY FEET, before I LIVE on MY KNEES"...thanks Jonny...that meant alot
"Oh, say does that star spangled banner yet wave?"....Your damn right it does.
|
|
|
Patrick_A
New Board Hall of Famer
If i could get my hands on that wascally Wabbit
Gender:
Posts: 843
|
|
Re: Hi - I'm new here, but have had CHs for 5 year
« Reply #7 on: Jul 6th, 2007, 10:06pm » |
Quote Modify
|
Welcome. It seems like you are well on your way to getting lots of good info.
Patrick_A
|
|
IP Logged |
Do you think that when they asked George Washington for his ID, that he just whipped out a One Dollar Bill?
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss