Author |
Topic: But It Never Worked For Me... (Read 543 times) |
|
Carl_D
Guest
|
If you are a cluster sufferer, an have tried all there is under the sun and nothing has worked...
To coin a cliche, if at first you don't succeed, try and try again.
If it has been a couple or a few years since you have tried something, TRY IT AGAIN!!! You may be surprised to find that your body chemistry may have changed, or your tolerance or dietary manner may make some change.
About 12 years ago I started using Verapamil to control my CH. It worked like a charm until I went chronic in 1998, then it lost effectiveness. I tried it again within the next 2 years of becoming chronic with no result.
Last year I was diagnosed with high blood pressure. My doc initially put me on Toprol-XL for treatment, but I suggested Verapamil, you know, for shit and grins.
Today I mark 45 days without a CH - and have been chronic since 1998!!!
Also, triptans did not work for me until about august 2003. For that I cannot explain. For the reason I am cluster free today I cannot explain. As to the cause of Cluster Headache, I cannot explain. All I know is this condition seems to mutate, which means if something didn't work for you in the past, give it a try again.
There is an end - even if it isn't quite in sight.
Carl D
PS - if you have tried everything to no avail, check out clusterbusters.com. Anything is worth some PF time.
|
| « Last Edit: Apr 1st, 2006, 1:59am by Carl_D » |
 IP Logged |
|
|
|
Richr8
New Board Hall of Famer
It's all about today...
Gender: 
Posts: 1396
|
 |
Re: But It Never Worked For Me...
« Reply #1 on: Apr 1st, 2006, 9:22am » |
 Quote  Modify
|
on Apr 1st, 2006, 1:58am, Carl_D wrote:| Today I mark 45 days without a CH - and have been chronic since 1998!!! |
|
Great news and good advice. I'm glad to hear you are getting some pf time.
Rich
|
|
IP Logged |
pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
|
|
|
sandie99
New Board Hall of Famer
Wish it, dream it, do it - inspite the pain!
Gender: 
Posts: 10429
|
|
Re: But It Never Worked For Me...
« Reply #2 on: Apr 1st, 2006, 10:11am » |
Quote Modify
|
I agree: if one med/treatment doesn't work, try another. And then another. And then another. Until one of them works. One will! NEVER GIVE UP!!!!!! 
Carl, lots of PF days for you!
Wishing PF time for all,
Sanna
|
|
IP Logged |
CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
  
Gender:
Posts: 6458
|
|
Re: But It Never Worked For Me...
« Reply #3 on: Apr 1st, 2006, 12:55pm » |
Quote Modify
|
AWESOME!
|
|
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.
|
|
|
Jonny
CH.com Alumnus
New Board Hall of Famer
Give me a shovel Ill dig my own grave!
Gender:
Posts: 26213
|
|
Re: But It Never Worked For Me...
« Reply #4 on: Apr 1st, 2006, 2:58pm » |
Quote Modify
|
on Apr 1st, 2006, 1:58am, Carl_D wrote:| For the reason I am cluster free today I cannot explain. |
|
Ditto!
After 30 chronic years the HA's just stopped and I stopped all the meds I was on.
Never give up!!!
|
|
IP Logged |
It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
|
|
|
mynm156
New Board Hall of Famer
hope life isn't a big joke, because I don't get it
Gender:
Posts: 1708
|
|
Re: But It Never Worked For Me...
« Reply #5 on: Apr 1st, 2006, 4:45pm » |
Quote Modify
|
Nice Post! Very Nice Post! Keep on Keeping on.
MYNM156
|
|
IP Logged |
"Half of the modern drugs could well be thrown out of the window, except that the birds might eat them."
|
|
|
Sandy_C
CH.com Alumnus
New Board Hall of Famer
Burn that bra!
Gender:
Posts: 2585
|
|
Re: But It Never Worked For Me...
« Reply #6 on: Apr 2nd, 2006, 4:40pm » |
Quote Modify
|
Very good advice! Thanks for reminding all of us that "things change", so something that quit working a long time ago, just might be today's ticket to being PF.
You know...if at first you don't succeed.....
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
|
|
|
Icey
New Board Newbie
I love YaBB 1G - SP1!
Gender:
Posts: 36
|
|
Re: But It Never Worked For Me...
« Reply #7 on: Apr 9th, 2006, 8:36am » |
Quote Modify
|
Hmm, Just starting to take Verapamil took 1 tab before bed and I think i'm gonna suffer side affects .I don't mind if it helps ,i'll put up with the blurred vision , n fainting feelings . I think i'm turning chronic after years of being episodic . He's started me on 40mg 3 times a day , is that strong enough I wonder 
Anyway , so glad to read something positive about it
Debbie
|
|
IP Logged |
|
|
|
NotH20
New Board Hall of Famer
Gender:
Posts: 778
|
|
Re: But It Never Worked For Me...
« Reply #8 on: Apr 10th, 2006, 12:24pm » |
Quote Modify
|
Debbie,
Sorry that your cycle has changed. Sure hope you haven't turned chronic. 
I'm currently on 960 mgs of Verap per day....I think you need to ramp up your dosage to get the full affect of this medication. If you're already feeling some of these symptoms off of one 40 mg tablet you probably need to check with your doc.
Good luck,
Mia
|
|
IP Logged |
|
|
|
Brew
CH.com Alumnus
New Board Hall of Famer
Low Four!
Gender:
Posts: 6515
|
|
Re: But It Never Worked For Me...
« Reply #9 on: Apr 10th, 2006, 12:52pm » |
Quote Modify
|
on Apr 9th, 2006, 8:36am, Icey wrote:Hmm, Just starting to take Verapamil took 1 tab before bed and I think i'm gonna suffer side affects .I don't mind if it helps ,i'll put up with the blurred vision , n fainting feelings . I think i'm turning chronic after years of being episodic . He's started me on 40mg 3 times a day , is that strong enough I wonder
Anyway , so glad to read something positive about it
Debbie |
|
This is NOT intended to be one of those macho replies, like "I have to take x times more than that," etc., etc. But I think yours is a very small dose, almost to the point of being non-theraputic.
I am currently taking 240mg twice a day (I weigh 200 lbs.), and I know there are others on this site who have taken quite a bit more than that.
You may want to talk to your doctor about upping your dosage. Obviously it's going to have more to do with how much you weigh than anything else.
|
|
IP Logged |
Always remember that you're unique, just like everyone else.
|
|
|
kcopelin
CH.com Alumnus
New Board Hall of Famer
good grief
Gender:
Posts: 536
|
|
Re: But It Never Worked For Me...
« Reply #10 on: Apr 10th, 2006, 1:13pm » |
Quote Modify
|
Right on-CH's do seem to mutate-like something from a bad science fiction movie-so what works today may not work next cycle...however, it might work the cycle after that. Never give up!
Praying for a CURE!
PFDAN to y'all,
kathy
|
|
IP Logged |
Words count, chose carefully.
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
Remove
test rss