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        Cluster Headache Help and Support >> Cluster Headache Specific >> Ok, Now What?
        
(Message started by: Chrisjg23 on Jan 11^th, 2007, 4:55pm)

Title: Ok, Now What?
Post by Chrisjg23 on Jan 11^th, 2007, 4:55pm

Hi Everyone,

I am seeking your infinite wisdom for my latest questions...First let me explain my situation:

I started with the CH's 11/21 at about 3-5 per day...not knowing what they were I went to the doctor by day 7 and he diagnosed me with CH (Thank God). I battled through the beast 2-5 times per day for the next couple weeks.

Week 3 I started on Verapamil 120 mg, then 5 days later up to 240...and then 7 days later up to 360mg per day. Which puts me at around 360 by week 5. It is now week 7 and I would say that I haven't had a serious CH (6 or higher) in about a week and a half. Any shadows or low level CHs I have aborted by chugging half a can of Monster energy drink.

So my questions...

Are they fading away or is it just the Verapamil?
How will I know?
Do I need to taper off Verapamil or can I just stop?

Thanks in advance,
Chris

P.S. I don't know what I'd have done w/out this site :o :o

Title: Re: Ok, Now What?
Post by AussieBrian on Jan 11^th, 2007, 5:01pm

DON"T STOP!!! Never change your medical regimen without discussing it first with your doctor.

Title: Re: Ok, Now What?
Post by Giovanni on Jan 11^th, 2007, 5:25pm

These things can lay around dormant (just after a cycle) waiting for you to piss it off. Don't do anything different for a period of time would be my recommendation.

John

Title: Re: Ok, Now What?
Post by JeffB on Jan 11^th, 2007, 7:31pm

Maybe your lucky and you are at the end of a cycle. Mine ususlly stick around 6-8 weeks.
do what your Doc. says tho! ;)

Title: Re: Ok, Now What?
Post by floridian on Jan 11^th, 2007, 7:34pm

Be careful mixing taurine and verapamil.

Title: Re: Ok, Now What?
Post by UN solved on Jan 11^th, 2007, 8:03pm

Just wanted to add that it's incredible that you were diagnosed on day 7. Many are undiagnosed or misdiagnosed for years before they get a correct DX.

UNsolved

Title: Re: Ok, Now What?
Post by Chrisjg23 on Jan 11^th, 2007, 8:29pm

I do feel quite lucky about the diagnosis...especially after spending some time reading this message board. I actually managed to self diagnose myself through some research, yet I still had my doubts due to the rareness of CH's. So, the doctor diagnosed and after the MRI was clear, it was all confirmed. ::)

I've read that 6-8 weeks is common for those that are episodic. But still, how do you know when they are over? I realize that this question probably does not have an answer...I also realize that "the end" is different for everyone and therefore my questions and ranting are probably just not meant to be answered...

I've read of the Verapamil + Taurine warnings, again, thanks to this board...and I have monitored my intake carefully and I haven't had any issues...

I suppose I should just feel blessed that I was diagnosed so well, Verapamil is working as a preventative, and Monster is a miracle abortive for me...I'll quit my bitchin'...but I still want to know how I'll know they are gone...until next time....

Title: Re: Ok, Now What?
Post by Guiseppi on Jan 11^th, 2007, 8:56pm

One of the cruelest cuts is never being sure! I use lithium so after 8 PF weeks I start lowering the dosage from 1200 a day to 900 to 600........when I hit 300 mg a day I know if they're gone or if they were just being masked by the lithium!

I start lowering dosage at 8 weeks pain free. If I get bit I hammer the prednisone again and ramp back up on the lithium. Then the watermark is 4 weeks PF and start down again. Last cycle went 8.5 months so I got bit a lot!!! Here's hoping you'rs is short and sweet!!!!

Guiseppi

Title: Re: Ok, Now What?
Post by TonyG1 on Jan 11^th, 2007, 9:01pm

on 01/11/07 at 20:29:31, Chrisjg23 wrote:

I've read that 6-8 weeks is common for those that are episodic. But still, how do you know when they are over? I realize that this question probably does not have an answer...

Chris - I too am episodic ... for me, everyone is different, I talk with my doc about lowering the verap dosage to start weaning off about 8 weeks in ... you'll know pretty quickly if the cycle is ended. I've had them long enough to be able to feel when its over... (sounds odd I know). Generally, my experience with the verap is that while it lowers the frequency and more importantly the intensity --- it seems to extend my cycle longer than it used to run before I was diagnosed. May be very different for others ... but as others have said -- it is VERY important to consult your physician before changing anything up ...

Title: Re: Ok, Now What?
Post by Bill_G. on Jan 11^th, 2007, 11:24pm

Chris,
Like everyone else has said wait until you talk to DR. before changing.
Last month, while still in cycle I talked to my neuro and he agreed to upping my verapimil to 400. It worked great and for a few days I was PF. Then I had to go to hospital, unrelated to ch, and when they checked my meds verapamil was only listed as 320. (Increase had been between me and Dr. on the phone and nothing was written down. As a heart med which it is primarily used for max dosage is 320.) In the hosp. within 2 days the monster came back at a fairly high rate.
Thank God I had a knowledgeable Internist, and infectious disease Drs. I talked with them and was able to get the problem resolved by and O2 non-re-breather, Imitrex, and back to normal on verapamil.

Bill,
PFDAN to all