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        Cluster Headache Help and Support >> Cluster Headache Specific >> Advice on preventatives
        
(Message started by: Jobette on Nov 29^th, 2007, 12:56am)

Title: Advice on preventatives
Post by Jobette on Nov 29^th, 2007, 12:56am

I was just wondering how many continue to take their preventatives (Verapimil, Neurotin, etc.) after a cycle? Or are you suppose to stop and begin again when and if the cycle returns. My doctor told me that I would have to take these for the rest of my life, with the impression that it would be ALL the time. [smiley=huh.gif]

Title: Re: Advice on preventatives
Post by Kevin_M on Nov 29^th, 2007, 7:35am

on 11/29/07 at 00:56:26, Jobette wrote:

Jobette,

I personally have not continued to take an amount not needed. If you are episodic the cycle will pass, you can speak with your doctor about tapering them down after a few weeks of no breakthroughs, and follow up with telling him of continued no hits thereafter, if that is the case.
He may agree to stepping down the dosage, and later again, another decrease, but stay in touch with him about it, feedback helps and he may be ok with curtailing in time down to nothing if good results are obtained from each gradual decrease.
I've gone through the routine many times with my doctor.

Title: Re: Advice on preventatives
Post by Guiseppi on Nov 29^th, 2007, 10:25am

I'm with Kevin, I can't wait to wean off all my meds as the cycle winds down. I live for the off cycle times when I can be completely med free!!!

But as kevin said, you work with your doc to wean off the meds, some meds can mess you up if you just stop cold turkey. ;;D

Guiseppi

Title: Re: Advice on preventatives
Post by E-Double on Nov 29^th, 2007, 10:09pm

you do what is best for you and under the watch of a doctor.

MAny of the meds we take can be dangerous if not regulated.

PF wishes

Title: Re: Advice on preventatives
Post by thomas on Nov 30^th, 2007, 9:12am

the only preventives I use anymore are magnesium and melatonin, and I'm not really crazy about taking the magnesium after a cycle, but I need the melatonin to sleep.

Title: Re: Advice on preventatives
Post by brewcrew on Nov 30^th, 2007, 10:12am

I had 14 months pain free between my last cycle and my present one, and I took 300mg of lithium 3x/day during the whole 14 months. I wasn't about to mess with a good thing, considering my last cycle was 18 months long.

Title: Re: Advice on preventatives
Post by clusterwife on Nov 30^th, 2007, 10:14pm

My hubby Kevin has had wonderful results with taking 150mg Lyrica twice daily everyday. He has had 3 breakthroughs in 3 months. All meds over a period of time is harmful. You have to decide for yourself if the payoff is worth the ill effects on your body. Good luck. Leah.

Title: Re: Advice on preventatives
Post by Jobette on Dec 3^rd, 2007, 4:36pm

In September I felt as though one of my preventatives was causing my headaches to get worse and causing me troubles with my body so I tapered off all of it. I had an idea of which one it was but I wanted to be off all of it. I just continued the O2 and imitrex. After about a week I felt like I was cycling down and was doing good until Thanksgiving. I have had about 4 episodes since then but nothing major. I was wondering if I needed to start some of my preventatives again. I have talked to my pharmacist about ramping up on them to be safe, I just don't want to wait too late. :-/

Title: Re: Advice on preventatives
Post by Guiseppi on Dec 3^rd, 2007, 4:58pm

Sadly it's such an in-exact science!!!! So damned much guessing goes on trying to figure out how close he's lurking. Hoping you guess right, good luck. ;)

Guiseppi

Title: Re: Advice on preventatives
Post by Jobette on Dec 3^rd, 2007, 6:55pm

No truer words have been spoken! I figure that my guess would be better than any since I am the one dealing with it (personally). I just want to feel normal or good when I can, and I refuse to take anything that may make things any worse. :-X And I do try to do things the right way as in consulting my doctor and or pharmacist, and I do trust my pharmacist because she gives me more information that my doctor sometimes. Everything about this condition has been and is a big gamble for me, but I have been known to take a gamble or 2!!! ;)