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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hi I m new...I was wondering about verapamil
        
(Message started by: stressedchef on Feb 22^nd, 2007, 12:11pm)

Title: Hi I m new...I was wondering about verapamil
Post by stressedchef on Feb 22^nd, 2007, 12:11pm

Hi Im new I have just been diagnoised with CH this is my second cycle I think to have had 2 yrs ago but only lasted about 2 weeks then.....Im going on 4 weeks now...but I think cycle is almost over...just got imatrex yesterday...my doctor also precribed verapamil as a preventive has anyone had experince with this.......and im trying to understand these "shadow" headaches.....I have day time headaches that are the same headache but on a low kip scale opposed to the nightime monster....and I have pain behind my eye on the affected side without headache.....if anyone can help?

Title: Re: Hi I m new...I was wondering about verapamil
Post by Mattrf on Feb 22^nd, 2007, 12:17pm

Verapamil is used by most and is one of the better preventatives for CH.
You should try and get your doctor to prescribe o2, read up on it on the left it is the best for stopping an attack in it’s tracks you may also want to slam a Redbull or like energy drink when you feel a hit coming on it also can help. Have you taken the Cluster Quiz on the left yet?
Give us more details on your symptoms, there are a lot of very smart people here that can help you.
I am very sorry you have CH but you have found the best place to come for support.

Matt

Title: Re: Hi I m new...I was wondering about verapamil
Post by stressedchef on Feb 22^nd, 2007, 12:21pm

Thanks for the quick reply.......I have taken the quiz....this website has already been a great help thanks for the info..... :)

Title: Re: Hi I m new...I was wondering about verapamil
Post by sbpolo67 on Feb 22^nd, 2007, 3:47pm

hello i am new to this web site also first of all i am very sorry that you have this devil i was diagnosed with clusters in 1996 they start out not being so painful but sorry to say they only get worse i have headaches about 6 times a day and they last for about 2 hrs. sometimes lessi take veraprimil 240 mg. 1 time a day plus oxygen at 100 percent 4 times a day . try useing a cold compress then alternate to a warm compressthat will sometimes help also rubbing back behind the ears also helps but most of the time you have to just ride out the pain but just watch out how much pain medication ytou take because you will get a rebound headache and they are just as painful well you take care and hope to talk to you later

Title: Re: Hi I m new...I was wondering about verapamil
Post by Kevin_M on Feb 22^nd, 2007, 7:32pm

on 02/22/07 at 12:11:52, stressedchef wrote:

but I think cycle is almost over...just got imatrex yesterday...my doctor also precribed verapamil as a preventive has anyone had experince with this.......

Welcome. Glad you found a doctor that seems to recognize CH. Imitrex as an abortive for ramping hits will help with those monster night ones, but comes in pill, nasal spray and injectable. The pill form would not be the way to go with CH, as you might find if prescribed when at its worse.
Verapamil at this point in a cycle will take time to be effective. It's a preventative to help stop the hits from coming through. The level can be adjusted by your doctor with your feedback as a cycle takes its turns. A script for it and the Imitrex will come in handy at the outset of another cycle.

Quote:

and im trying to understand these "shadow" headaches.....I have day time headaches that are the same headache but on a low kip scale opposed to the nightime monster....and I have pain behind my eye on the affected side without headache.....

It sounds like this cycle is passing. Most usually for me there is a weaking of the hits until they just threaten during the daytime, like you describe but don't materialize as a cycle is coming to an end. Something with caffeine can surprisingly make them subside.

Title: Re: Hi I m new...I was wondering about verapamil
Post by TomTerrific on Feb 22^nd, 2007, 11:17pm

Hello,

I'm new to the site as well, but not to CH. From the welcome I've received I think I'll be here a long time! As to your question, verapamil is my bestest friend. Everyone is different and you have to find out what works for you, but for me its lots of caffeine to stop a CH and varapamil to stop the cycle. Once I realize they're back I get a script for 120 mg extended release verap and usually within a couple of weeks I'm down to just shadows. By the end of a month the cycle is over. I take them for another month just to be sure, then quit for another year or two. From what I've read, I'm one of the lucky ones. I've lost track of the exact number but it's worked more than half a dozen times over the last 12 years since I was diagnosed.

Best wishes and pain free days

Tom

Title: Re: Hi I m new...I was wondering about verapamil
Post by RichardN on Feb 23^rd, 2007, 12:56am

Hi and Welcome to Clusterville

You need to really push your doc for a script for 02. I can't take Imitrex (have some arterie blockage), so 02 is my only abortive. Works for 60-70% of us to abort. I can kill the beast in minutes if used early-on in the attack.

You need a 15 lpm regulator (frequently, the script will specify . . . or the med equip supplier may assume . . . an 8 lpm regulator . . . not entirely useless, but not nearly as effective. You will also need a non-rebreather mask (the one with the bag) and . . . . as soon as you can, order a clustermasx . . . even more effective.

Copy the 02 links available and take to your doc. Hi-flo oxygen IS an accepted abortive for CH. AND it.

If 02 works for you, you can save the Imitrex for the attacks the 02 doesn't reach (it takes a little practice . . . . but I rarely get to the "dance" stage anymore).

Don't discount the "water X 3" therapy (link on left). I'm convinced water therapy has helped me reduce the frequency/intensity of my attacks . . . it takes a LOT of water . . . and you may want to check with your doc to make sure increased fluid intake would affect any of your meds.

Read, read, read . . . and ask any questions you may have . . . . this is a big family with countless years of first-hand experience with this monster and DJ has created a forum that I personally believe has saved many lives, countless lively-hoods and innumerable relationships . . . . THANKS AGAIN DJ!

Be Safe, PFDANs

Richard

Title: Re: Hi I m new...I was wondering about verapamil
Post by TonyG1 on Feb 24^th, 2007, 7:12pm

on 02/22/07 at 23:17:58, TomTerrific wrote:

As to your question, verapamil is my bestest friend. Everyone is different and you have to find out what works for you, but for me its lots of caffeine to stop a CH and varapamil to stop the cycle.

Best wishes and pain free days

Tom

Ditto on what Tom said, verapamil is one of my best friends as well !! It works for some and not others because the condition and treatment seems to differ slightly from person to person ... gotta find what works for you. It is worth discussion with your doc. As Tom said, I take it for about a month after my cycle seems to have ended and then I taper down off of the stuff. It is IMPORTANT to discuss tapering off of the verap with your doctor -- you should NOT just stop taking it.

Title: Re: Hi I m new...I was wondering about verapamil
Post by jlk on Feb 25^th, 2007, 11:01pm

I tend to give a new med a few weeks to see if it is effective. Verapamil didn't work for me but it might for you. Watch out for pain meds! They cause alot of trouble and nothing really touches the pain on a cluster anyway. My view is do the imitrex (or O2 if it works for you) and skip the painkiller. Also, I know this sounds ridiculous but it is very important to breathe and make your both relax. I wound up in the ER a couple times because I tensed up and paniced. After that, I really worked on relaxing my body. Not easy but much better than the ER! Good luck with your treatment!!

Title: Re: Hi I m new...I was wondering about verapamil
Post by stressedchef on Feb 27^th, 2007, 1:42am

Hi ...And thanks for all the advice this website has been soooooooooooo helpful ....I am at the end of a cycle and thankful......I will have o2 for the next one,,,what a sad thing to have to say the beast will be back I pray it wont be soon ...thank you and I have to tell you red bull did work to my amazement....i was awakend ran to ref...and slammed it .....it defentaly stopped a building K6......couldnt sleep but I was very happy never the less....thanks again.......I wish you power against the beast.......Isaac ;)

Title: Re: Hi I m new...I was wondering about verapamil
Post by TonyG1 on Feb 27^th, 2007, 7:57pm

on 02/27/07 at 01:42:41, stressedchef wrote:

....I am at the end of a cycle and thankful............I wish you power against the beast.......Isaac ;)

Hey Isaac -- Glad you're winding down on the cycle !!! http://www.websmileys.com/sm/happy/1209.gif That is great news! Wishing you much PF time !!

T.

Title: Re: Hi I m new...I was wondering about verapamil
Post by burnt-toast on Mar 7^th, 2007, 3:19pm

Here's a link that will be helpful in referencing this drug and any others that may be prescribed.

http://www.drugs.com/

Working closely with your doc. will be important to get the best results.

I take a combination of 1200mg Lithium Carbonate, and 720mg Verapamil daily with 9mg Melatonin 30-40 minutes before bed. Far from a cure but significantly reduces severity/frequency of attacks.

In my experience the most difficulty came from finding effective dosage levels while minimizing side effects and establishing a regular dosage schedule that would keep blood levels most consistent. If I miss a dose or get off schedule by an hour or more, I going to be put through hell.

Results should be expected just inside a week - building stable blood levels is important.

By experimenting (under supervision of my doc.) I found that exceeding 720mg Verapamil improved results - but caused painful leg/ankle swelling - My doc. considered this a minor side effect but it was extremely uncomfortable to walk so we backed down to 720mg.

Best wishes,

Tom