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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> Shipwrecked on a calm sea
        
(Message started by: ex_pat_asia on Aug 10^th, 2004, 1:32pm)

Title: Shipwrecked on a calm sea
Post by ex_pat_asia on Aug 10^th, 2004, 1:32pm

The other day I posted how I had gone from 6 - 8 attackes in a 24 hr period to two and how those two were mild by comparison. I was approaching 10 weeks of the cycle I am in now.

The relief came from starting Verapimil and a betamethasone taper. The drop in attacks was almost immediate, the two milder attacks occured in the 24 hour period immediately following my first 24 hrs of taking those drugs. I was elated.
However, the Verapimil was having side effects that I found hard to deal with. They slowed my heart rate dramtically and I felt low on oxygen and listless. It is in my nature to be very active, and I travel in my business. So these concequences did not seem trivial to me, though the relief was so great. So I started screwing with the recipe. I took the Verapimil down to 240MG from 480 which I had taken in 240 dosages twice per day. That has not been a good idea. Today I have had four attacks with one of them reaching an 8 and lasting 45 minutes. Could not get it to respond to Oxygen and the immigram pills available to me take about as long as a usual attack does in me.

I went back to the 240MG dosage this evening and will continue tomorrow. I have just aborted a KIP5 with Oxygen and I'm a little leery of sleeping (its 1:30 am my time). I write this simply to state that the obvious mistake was to try to fine tune something that was working. The attacks are far worse then a little brethiness and weakness feeling. Oh well...stupid me...this is just one more testimony to "if it ain't broke don't fix it". I obviously didn't steer this ship well.
Cheers and PFDAN to all.

"Every man has his follies - and often they are the most interesting thing he has got."

Title: Re: Shipwrecked on a calm sea
Post by IndianaJohn on Aug 10^th, 2004, 1:48pm

Sorry that your not feeling well. BTDT and it sucks! I have found that it is very risky to tamper with the level of berap in cycle. Out of cycle it's ok. I plan to ween off mine as soon as this cycle breaks.

Best of luck!

John

Title: Re: Shipwrecked on a calm sea
Post by UN_SOLVED on Aug 10^th, 2004, 2:48pm

on 08/10/04 at 13:32:00, ex_pat_asia wrote:

The relief came from starting Verapimil and a betamethasone taper. The drop in attacks was almost immediate

Probably due to the steriods. Verapamil will take a little while to have an effect. The increase in attacks usually start when the dosage of steriods is dropped.

Unsolved

BTW, I agree ... if it aint broke, don't fix it !

Title: Re: Shipwrecked on a calm sea
Post by don on Aug 10^th, 2004, 3:12pm

It normally takes up to 7-14 days for verapamil to reach theraputic levels. I always try to start the verapamil before the prednisone taper.

Title: Re: Shipwrecked on a calm sea
Post by ex_pat_asia on Aug 11^th, 2004, 3:25am

on 08/10/04 at 14:48:36, UN_SOLVED wrote:

Quote:

It normally takes up to 7-14 days for verapamil to reach theraputic levels. I always try to start the verapamil before the prednisone taper. - Don

Thanks, I hadn't read that the Verapamil took that long to reach therapeutic value. I saw the neuro today...follow up...and he extended the steriod midpoint by 4 days, and agreed to the Goadsby Verapamil regime which just seems to make sense.

Today was better...shadows at wake up and a low grade 5 after lunch. Pretty sure I have this one on the run. But the lesson I outlined above was well learned.

Thanks again guys..

Title: Re: Shipwrecked on a calm sea
Post by Ronny on Aug 11^th, 2004, 3:03pm

on 08/10/04 at 13:32:00, ex_pat_asia wrote:

However, the Verapimil was having side effects that I found hard to deal with.

Hi,

I had those side effects too, but to my opinion those effects decreased after a while, after three days, my heart was beating at a rate of 55 where normally its about 85. I felt very very tired all day. I dont have these fx anymore, seems like my body compensated. I tried to cut down on vera, with the known result, Now i've decreased the dose with 1/3 and that seems to work, in a week or so i'll try to get rid of another third.

Wishing you well,

Ronny.

Title: Re: Shipwrecked on a calm sea
Post by ex_pat_asia on Aug 11^th, 2004, 11:06pm

on 08/11/04 at 15:03:59, Ronny wrote:

Hi,
I had those side effects too, but to my opinion those effects decreased after a while, after three days, my heart was beating at a rate of 55 where normally its about 85. I felt very very tired all day. I dont have these fx anymore, seems like my body compensated. I tried to cut down on vera, with the known result, Now i've decreased the dose with 1/3 and that seems to work, in a week or so i'll try to get rid of another third.

Wishing you well,

Ronny.

Many thanks Ronny-- Actually my BP and HR have risen a bit today, maybe the process you describe is already happening. In addition the restoration of the Verapamil dosage also seems to be reducing the attacks. Since yesterday I've only had some agitating shadows that I kept chasing away with Oxy. Was worried they would reappear for the usual 2:00 am full bout but they did not.

Many posts here testify to a period for the Verapamil to work and for the body to adjust to it. It may be that I have a "shorter string" in that regard...as I think I am seeing both the side effects, and possibly the intended prophylactic action, sooner then what I've read.

Cheers and PFDAN to you.

Title: Re: Shipwrecked on a calm sea
Post by IndianaJohn on Aug 11^th, 2004, 11:08pm

Glad to hear you're feeling better....

Best Wishes

John