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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> I want my cake
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Message started by shark boy on Apr 1st, 2009 at 2:09am

Title: I want my cake
Post by shark boy on Apr 1st, 2009 at 2:09am
I have been on 480mg. of Verapamil a day for many years. This is my best preventative. I Use 02 as an abortive at 20 lpm through a mask.When it would get real bad or i had to travel I would use D.H.E. The dhe would knock them out for at least 24 hours and I would get some pf zzz's. I have a great doc, but I'm my worst enemy. and that's what got me in trouble the first of the year. In December my attacks got worse so my doc put me on a program to up the dose of Verapamil. The goal was 720 mg. if I could handle it and I continued to have problems we will slowly jack it up to 960 mg. I had a real bad day and got impatient and went for the 960mg all at one time. I can tell you it was not good, no fun, plus it scared the crap out of my family.I am fine now and up to 720 mg a day. I have around 4 attacks a day and the 02 will blow them away in short minutes. Two days ago the 1:30 attack started, I went in my safe room and started sucking 02 but the dam thing got legs, it caught me off guard and it got up to a 6 or 7 so I got the D.H.E. out but by then I'm in deep trouble. I don't know about you but its real hard for me to load and inject when you are in that much pain. Well, I'm back to normal, right now normal is 4 attacks in a 24 hour period. This series started in late September of 08 and the way my life goes if I have any luck they end around 6 months. I have had a few years where they go for the whole year but mostly I'm in it for the 1/2 the year. If I remember right, when they first started 30 years ago I had a lot of years where they just lasted 3 months. That would be nice.

I'm sure a lot of you take more Verapamil than I do, I sure would like to here from you how you deal with the side affect. Besides loosing my memory, which by the way I can excuse that because I'm 63. The problem that is really bothering me the most is that I just have to fight to get any energy. I have to push myself hard to get going. I have been real active my whole life. I drink coffee plus energy drinks. My heart is back in good shape and I try to exercise, I'm not fat, I am 6'4'' and weigh 185. I am NOT going down on my meds, I just can't stand feeling so shitty.I guess I want my cake and eat it to.

Title: Re: I want my cake
Post by Charlotte on Apr 1st, 2009 at 8:52am
Hang in there, buddy.

Title: Re: I want my cake
Post by maalstroom on Apr 1st, 2009 at 11:30am
Hi.

I was on 480 mg Verap as well, and understand very well what you mean. I especially hated the ''weak'' legs it gave me, and the lessened levels of energy.
Besides that I had not much side effects.

I don't recall any memory loss, however..... (oh the irony).

Pascal.

Title: Re: I want my cake
Post by DennisM1045 on Apr 1st, 2009 at 12:40pm
I've only ever had to go up to 400mg.  Though I'm prepared go wherever I have to to get relief :-/

I found that the longer I was at the 400mg level the less drained I felt.  Over two months things got a lot better.

I'd be very careful mixing high dose Verapamil and energy drinks.  The Taurine in the energy drinks is a calcium channel blocker.  So is Verapamil.  Block too many calcium channels and you end up heart rythm problems.

Be careful...

-Dennis-

Title: Re: I want my cake
Post by mezza on Apr 1st, 2009 at 1:15pm
HI Shark

Last cycle , I took 620 mg of Verapamil.  While it sure was a life saver and I wouldn't have traded it for the world,  I can relate to the side effects .

I was absolutely exhausted all the time,  I had difficulty even walking up and down steps because I was so drained.   I also had terrible memory loss at that time and alot of difficulty getting my thoughts together to speak like I had some sense.

Happy to report though, that those effects didn't last once I tapered off the verap last june.  

Title: Re: I want my cake
Post by shark boy on Apr 1st, 2009 at 7:58pm
Hi, Better day today, no doubt I had a week moment, I think I was hoping someone would chime in with the new magic little bean pill that would make this all go away. Dennis thanks for the info on the energy drinks. I know sometimes I drink too many at a time. I'm going to hang in their. If all goes well this low life that's been renting space inside my head is due to get evicted, his 6 months are up...
Thanks for your time
Shark

Title: Re: I want my cake
Post by Dennis on Apr 1st, 2009 at 10:48pm
I've taken verapamil off and on for twenty years.  At first, even 160 mg a day would shut down the attacks, and I could taper off after a couple of months.  As Dennis noted earlier on this thread, the side effects usually lessen after a few weeks.  What's not to like?

But by around 2002, the required dosage to stop the attacks had gone up to 960 mg/day. I could still manage the minor side effects, like swelling in the ankles and some fatigue. Really, I don't think I even noticed any side effects at all this time around.

This cycle however, the attacks broke through after about 3 weeks pain free, and kept coming 6-7 times a day, in spite of 960 mg/day verapamil.   I've had two normal EKGs during my current cycle of 4+ months.

The doc then ramped me up to 1200 mg/day Lithium and maintained the 960 mg verapamil. My new O2ptimask is now collecting dust, as I've been pain free for more than a month. I do notice that, like mezza, I have some "difficulty getting my thoughts together to speak like I had some sense."

I was blaming this on the Lithium, but maybe it's the verapamil, or the combination of the two. My age-related CRS doesn't need any aggravation, that's for sure. But I would not trade the last month of having my life back again for a little more clarity of thought. And, speaking only for myself, taking verapamil was worth it every time.

Dennis

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