Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2005 Cluster Headache Specific Posts >> Just wanted to introduce myself to the club
        
(Message started by: sunil_gururaj on Jun 17^th, 2005, 10:03am)

Title: Just wanted to introduce myself to the club
Post by sunil_gururaj on Jun 17^th, 2005, 10:03am

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

Title: Re: Just wanted to introduce myself to the club
Post by floridian on Jun 17^th, 2005, 10:08am

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.

Title: Re: Just wanted to introduce myself to the club
Post by sunil_gururaj on Jun 17^th, 2005, 10:28am

Thanks mate...
do you think CH can be prevented by continuous use of verapamil?

Title: Re: Just wanted to introduce myself to the club
Post by burnt-toast on Jun 17^th, 2005, 11:25am

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

Title: Re: Just wanted to introduce myself to the club
Post by Gator on Jun 17^th, 2005, 1:44pm

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.

Title: Re: Just wanted to introduce myself to the club
Post by floridian on Jun 17^th, 2005, 9:18pm

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.

Title: Re: Just wanted to introduce myself to the club
Post by don on Jun 18^th, 2005, 7:30am

Quote:

do you think CH can be prevented by continuous use of verapamil

No.

I think the effectiveness of the verap will diminish with continuous use so when you go into cycle you are basically screwed.

Title: Re: Just wanted to introduce myself to the club
Post by Kiwiinoz58 on Jun 25^th, 2005, 7:27pm

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)

Title: Re: Just wanted to introduce myself to the club
Post by Sunil Gururaj on Jun 27^th, 2005, 3:54am

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

Title: Re: Just wanted to introduce myself to the club
Post by Kim Y. on Jun 27^th, 2005, 11:08am

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

Title: Re: Just wanted to introduce myself to the club
Post by Sunil Gururaj on Jun 28^th, 2005, 2:39am

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

Title: Re: Just wanted to introduce myself to the club
Post by marlinsfan on Jun 28^th, 2005, 7:38am

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

Title: Re: Just wanted to introduce myself to the club
Post by Kim Y. on Jun 28^th, 2005, 12:25pm

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

Title: Re: Just wanted to introduce myself to the club
Post by BMoneeTheMoneeMan on Jun 28^th, 2005, 11:50pm

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

Title: Re: Just wanted to introduce myself to the club
Post by Kevin_M on Jun 29^th, 2005, 12:07am

on 06/28/05 at 02:39:00, Sunil Gururaj wrote:

Just wanted to know if there is any way to know if the cycle is over.

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

Title: Re: Just wanted to introduce myself to the club
Post by kcopelin on Jun 29^th, 2005, 12:29am

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

Title: Re: Just wanted to introduce myself to the club
Post by Sunil Gururaj on Jun 29^th, 2005, 2:47am

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

Title: Re: Just wanted to introduce myself to the club
Post by kcopelin on Jun 29^th, 2005, 10:37am

:DOne week pain free is good!
wishes for continued PFDAN
Kathy

Title: Re: Just wanted to introduce myself to the club
Post by Kim Y. on Jun 29^th, 2005, 10:52am

[smiley=hug.gif]One week is wonderful...PF wishes and vibes that it continues............Kim