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Topic: Just wanted to introduce myself to the club (Read 403 times) |
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Sunil Gururaj
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Just wanted to introduce myself to the club
« on: Jun 17th, 2005, 10:03am » |
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Hi friends,
I am new to this board.
I have been suffering from episodic CH from 15 years. But this was diagnosed only one year ago.
I'm now 30 yrs old.
I have a cycle once in ~2 years.
Each cycle is about 3 weeks long.
In each cycle, the frequency of attacks is one attack in 1-2 days.
Right now, I am in between a cycle.
My neuro prescribed me prednisone last year. I could not judge it's working as the diagnosis was made towards the end of the cycle itself.
This cycle, I started prednisone for the first 10 days. Today, he changed to verapamil.
Has anyone tried verapamil (isoptin). If so, how does it work.
Rgds,
Sunil Gururaj
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floridian
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Re: Just wanted to introduce myself to the club
« Reply #1 on: Jun 17th, 2005, 10:08am » |
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It is one of the better preventives - many consider it the first choice for this use. Nothing works for everyone, but verapamil works well for many of us.
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Sunil Gururaj
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Re: Just wanted to introduce myself to the club
« Reply #2 on: Jun 17th, 2005, 10:28am » |
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Thanks mate...
do you think CH can be prevented by continuous use of verapamil?
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burnt-toast
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Re: Just wanted to introduce myself to the club
« Reply #3 on: Jun 17th, 2005, 11:25am » |
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sunil_gururaj -
Welcome to the head bangers ball!
My med mix includes 720mg verapmil (240mg x 3) daily. It helps control the CHs but doesn't completely stop attacks. I haven't stopped taking Verapamil during the few breaks I have had - and at least in my case the cycles cranked back up. Others may have had different experiences.
Tom
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| « Last Edit: Jun 17th, 2005, 11:14pm by burnt-toast » |
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Gator
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Re: Just wanted to introduce myself to the club
« Reply #4 on: Jun 17th, 2005, 1:44pm » |
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Hello Sunil Gururaj! Welcome to the website.
You may not find much relief from Verapamil this go around if it has already been 10 days and your cycle is only 3 weeks long. It may not do a lot for you even if started at the beginning of your cycle as it takes a couple weeks to reach fully effective levels in the system. The proper way to administer a preventative would be to start both the prednisone and the verapamil at the same time and taper the prednisone as the verapamil builds in the system.
For people with very short cycles, it is probably more important to have an effective abortive. Oxygen is about the best if you can get it. Injectible and nasal sumatriptan, and nasal zolmitriptan are about the quickest and most effective. Some have had good results from the quick melt Zomig tabs. For the most part, pills work too slowly to be an effective abortive.
When it comes to CH, all bets are off when it comes to which treatments are best. Everyone reacts differently to the various meds. Hell even the same person can react differently to the meds from one cycle to the next.
Read everything you can in the links to the left and in the various message boards. Knowledge is power against the beast.
Again, welcome. Good luck finding the treatment that is right for you.
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floridian
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Re: Just wanted to introduce myself to the club
« Reply #5 on: Jun 17th, 2005, 9:18pm » |
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Gururaj - you are the royal teacher. It is encumbent upon you to learn all you can and help us understand and defeat this disease. And welcome.
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don
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Re: Just wanted to introduce myself to the club
« Reply #6 on: Jun 18th, 2005, 7:30am » |
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Quote:| do you think CH can be prevented by continuous use of verapamil |
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No.
I think the effectiveness of the verap will diminish with continuous use so when you go into cycle you are basically screwed.
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| « Last Edit: Jun 18th, 2005, 7:31am by don » |
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Kiwiinoz58
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Re: Just wanted to introduce myself to the club
« Reply #7 on: Jun 25th, 2005, 7:27pm » |
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Hi there,
I was put on mild dosed of Verap after 8 months of 5-6 days out of 7 with intense CH's, finally when the dose got to 480mg I had 2 1/2 months pain free. Then it started up again 4-5 days out of 7 and have had an extra 160mg added this week. Will have to wait and see if it helps.
cheers,
Jacqs(Kiwi)
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Sunil Gururaj
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Re: Just wanted to introduce myself to the club
« Reply #8 on: Jun 27th, 2005, 3:54am » |
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Hi All,
10 days of Verapamil and it seems to be working.
just 1 attack on the second day!
Does someone know how to find out if the cycle is over?
It is already 3 weeks and I dont know how long I have to continue the medication.
Rgds,
Sunil Gururaj
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KMT
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Re: Just wanted to introduce myself to the club
« Reply #9 on: Jun 27th, 2005, 11:08am » |
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Welcome to the board. Sorry you have a reason to seek us out...
What is the dose of your Verap.?
Many have great success with it but a lot of times it is in higher doses. So don't give up if in 10 days or two weeks you don't see much. Talk with the doctor and get it increased as you need. Take baby steps though.. Your doctor will know that.
PF wishes to you....................Kim
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aka...................................................... KimY
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Sunil Gururaj
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Re: Just wanted to introduce myself to the club
« Reply #10 on: Jun 28th, 2005, 2:39am » |
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Thanks Kim,
The dose is 120mg X 3 times a day.
I did not have any attack for one full week now.
Just wanted to know if there is any way to know if the cycle is over.
Usually my cycles are around 3 weeks long.
Rgds,
Sunil
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marlinsfan
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Re: Just wanted to introduce myself to the club
« Reply #11 on: Jun 28th, 2005, 7:38am » |
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Sunil,
When I asked that same question, someone suggested that to find out I should drink a couple of beers and see if that triggered a headache. I did, and it did.
Jose
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KMT
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Re: Just wanted to introduce myself to the club
« Reply #12 on: Jun 28th, 2005, 12:25pm » |
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Do you get any shadows at all?
Alcohol is a test as long as it is a trigger for you.
I would give it a few weeks before youcome off the Verap. And then slowly tapper off under doctors supervision and then if you don't get as much as a shadow then maybe it is over. That is a good way to test it.
Good luck and I hope that you are PF for another long while.............................Kim
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aka...................................................... KimY
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BMoneeTheMoneeMan
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Re: Just wanted to introduce myself to the club
« Reply #13 on: Jun 28th, 2005, 11:50pm » |
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Sorry to meet you Sunil. We all know exactly what you are going through. Read up on all that you can. Information has proven to be my best medication to date.
I took verapimil and it is possible that it broke my cycle, but i stopped taking it cause of a side effect. Oxygen is really good, and Imitrex shots have been about 99% effective for me within 15 minutes during an attack. You cant take very much Imitrex though. Its expensive and you build up tolerance to it if you arent careful, but it has a damn good track record for near-immediate relief. You can also take the same med in pill form, but it does not have nearly the same success rate.
9 to 12mg Melationin and 25 to 50 mg dyphenhydramine mixed an hour before bed is also very popular too, and has helped me tremendously.
As I said, read up. There is lots of info here. Everyone is different, so they react to the meds in different ways. what may work well for me may not help at all for someone else.
Good luck and welcome
PF wishes
BMonee
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Kevin_M
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Re: Just wanted to introduce myself to the club
« Reply #14 on: Jun 29th, 2005, 12:07am » |
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on Jun 28th, 2005, 2:39am, Sunil Gururaj wrote:| Just wanted to know if there is any way to know if the cycle is over. |
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Don't listen to me. If things are going good I must figure it's my duty screw things up. I find out by dropping 120mg after a long period of 'no hits'. Within 48 hours, I find out how dumb I can be over and over and just add it back again but like to stay close to a minimum needed dosage level. It's ok to keep being hopeful though I guess. Just one time out of ten I might not be stupid.
I keep hoping anyway, and keep the aborts real handy. 
Kevin M
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| « Last Edit: Jun 29th, 2005, 12:12am by Kevin_M » |
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kcopelin
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Re: Just wanted to introduce myself to the club
« Reply #15 on: Jun 29th, 2005, 12:29am » |
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Your cycles sound pretty predictable-and its really common to be unable to determine if a medication ended the cycle or if it was just its' time to go. I know my cycles ending when I stop having shadows-and I continue on verap (240mg) for at least 3 weeks after.
Sorry you had to find us, but glad you did.
Kathy
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Sunil Gururaj
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Re: Just wanted to introduce myself to the club
« Reply #16 on: Jun 29th, 2005, 2:47am » |
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Thank you all friends for all the suggestions/wishes.
This website is great.
Anyways, I just called up my neuro today and he suggested to continue on the same dosage for another week and reduce 120mg after that.
but the good news is I have not had a major attack since one week.
Thanks again,
Sunil Gururaj
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kcopelin
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Re: Just wanted to introduce myself to the club
« Reply #17 on: Jun 29th, 2005, 10:37am » |
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 One week pain free is good!
wishes for continued PFDAN
Kathy
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KMT
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Re: Just wanted to introduce myself to the club
« Reply #18 on: Jun 29th, 2005, 10:52am » |
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 One week is wonderful...PF wishes and vibes that it continues............Kim
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aka...................................................... KimY
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