Author |
Topic: Any advice for the newbie?? (Read 262 times) |
|
JayMoe
New Board Newbie
Posts: 4
|
 |
Any advice for the newbie??
« on: Jun 3rd, 2007, 8:08pm » |
 Quote  Modify
|
Hello,
I can't tell you how nice it is the know that there are others out there who can relate to what I have been going through for the last year or so.
A little about myself, I am a 26 year old female, I have had CH for over a year. I have only had the dx for about 4 months. I have tried prednizone, indomethicin, pamelor, loads of narcotics, all of the triptans, and now I am on lamictal, oxygen, and newly I have been prescribed verapamil. I am on 40mg three times a day. I am wondering if anyone has had success with this drug? When reading through several other messages, it seems like I am only at the beginning of figuring out what may help me. I have yet to have a day without pain in the last year and my spirits are falling. The oxygen helps when the pain starts but they still keep coming everyday......I need to find something..anything that may work as a preventative.....any words of wisdom or suggestions would really help. Thanks in advance, I am just glad to be here.
|
|
 IP Logged |
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
  
Gender: 
Posts: 6458
|
|
Re: Any advice for the newbie??
« Reply #1 on: Jun 3rd, 2007, 8:22pm » |
Quote Modify
|
Good luck and try to be as positive as possible!
Great to hear thatyou have O2.
As far as verapamil goes, you are on a very low dose.
Many of us have been upwards of 960.
i never went higher than 640.
Remember to breathe and keep living
E
|
|
IP Logged |
I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
|
|
|
Kris_in_SJ
New Board Hall of Famer
There's no place like home.
Gender: 
Posts: 1539
|
|
Re: Any advice for the newbie??
« Reply #2 on: Jun 3rd, 2007, 8:32pm » |
Quote Modify
|
Ditto to EE. I've never found relief until about 10 days at 480mg/day on Verapamil.
Of course, your doc needs to watch your B/P as your dosage increases - but increase it must (in my best Yoda voice).
Then, when your cycle is over, wean off it gradually. If you're an episodic, the best rule is no meds between cycles.
Hugs and Best Wishes,
Kris
|
|
IP Logged |
I'm a small woman in small town being chased by a VERY BIG BEAST!
|
|
|
mynm156
New Board Hall of Famer
hope life isn't a big joke, because I don't get it
Gender:
Posts: 1708
|
|
Re: Any advice for the newbie??
« Reply #3 on: Jun 4th, 2007, 6:36am » |
Quote Modify
|
Welcome yes as the others have said your dose of verapimil is low. I am up to 360mg twice a day. It helps me alot. without itmy head goes into attack overload! So just keep on with it and Good Vibes
MYNM156
|
|
IP Logged |
"Half of the modern drugs could well be thrown out of the window, except that the birds might eat them."
|
|
|
barry_sword
CH.com Alumnus
New Board Hall of Famer
Mountain Biking Keeps Me Sane
Gender:
Posts: 1988
|
|
Re: Any advice for the newbie??
« Reply #4 on: Jun 4th, 2007, 7:15am » |
Quote Modify
|
Hi, nice to meet you. 480mg Verap. daily seems to be my dose and my BP is very good. o2 has been a god send for me. What mask are you using? I have a Clustermasx and it works like a charm.
Hope you get some PF time.
Barry
|
|
IP Logged |
QUIT SMOKING SEPT. 03 2005,
http://barrysword.blogspot.com
|
|
|
Wayne
New Board Old Timer
RedBull Rules!!
Gender:
Posts: 299
|
|
Re: Any advice for the newbie??
« Reply #5 on: Jun 5th, 2007, 1:22am » |
Quote Modify
|
Hi and welcome
I also started on Verapamil three weeks ago, 720mg a day in three equal doses. It took a while to kick in properly but a full week pf now, not even shadowsfor the last 3 days.
I hope it works for you
|
|
IP Logged |
A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort.
|
|
|
Bob_Johnson
New Board Hall of Famer
Gender:
Posts: 1796
|
|
Re: Any advice for the newbie??
« Reply #6 on: Jun 5th, 2007, 10:19am » |
Quote Modify
|
Your low Verap dose at least suggests that your doc may not be experienced working with headache disorders. You may wish to ask about his experience and you can use this article as a way to explore both you options and his experience.
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
|
|
IP Logged |
Bob Johnson
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss