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Need advice regarding my preventive meds (Read 2112 times)
AfraidOfTheDark
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Need advice regarding my preventive meds
Sep 23rd, 2008 at 11:57am
 
Just a little background info..I've been episodic since 1999 with an average of one cycle a year, usually around April/May or October. I've been in remission for over a year now, with mild shadows appearing off and on over time.

Today, I have been experiencing shadows all day, and they seem much more intense than normal. Normally, my shadows are brief and few. Obviously, I won't know if I'm truly entering a cycle until I have that first CH. My question is, would it be a good idea for me to begin my preventive med - Verapamil, or should I wait until I know for sure? If I were to start the Verapamil and I'm not yet actually entering a cycle, could the meds trigger a cycle?

I don't have any insurance, nor can I afford to make an uneccessary trip to the doctor; so when I last went to the doctor and received a prescription, I filled all three refills for the Verapamil. The Verapamil has worked so far, though I'd only used it through one cycle (it was given to me after I'd reached my limit on Prednisone).

Anyway, any advice would be appreciated. I'm getting a little apprehensive, and I hate not knowing if the next cycle is lurking around the corner.  Undecided
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mandymarie96  
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Jeannie
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Re: Need advice regarding my preventive meds
Reply #1 - Sep 23rd, 2008 at 12:11pm
 
Hi!

Last spring I started Verap at the first sign of shadows.  I made it through the entire season with only shadows.  It took me a long time to wean off of it though.  Every time I tried the shadows came back then twice, in the summer, I had two hits....relatively mild though. 


I think that starting the Verap before my cycle really got started gave me a head start on getting it under control.  The year before, I started it after my cycle had been going for a while and I don't think the Verap made a bit of difference.  Hope this helps.

Jeannie
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DennisM1045
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Re: Need advice regarding my preventive meds
Reply #2 - Sep 23rd, 2008 at 12:39pm
 
If I were you I wouldn't start the verapamil until I'd had my first CH.  Instead, I'd head to the Doctor NOW and have him give me a script for a pred taper. 

That way once your cycle does start you'll have the pred to hold the beast off while the verapamil builds to its theraputic level.

I'd also suggest you ask for some Oxygen while you're in there.

In general I think spending money on a Doctor's visit when you are out of cycle to prepare for when the cycle starts is the best way to go.  Especially where you already have a good idea of what is going to work.

Good luck...

-Dennis-
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Bob Johnson
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Re: Need advice regarding my preventive meds
Reply #3 - Sep 26th, 2008 at 9:08am
 
My experience has been that once the doc has established the diagnosis to his satisfaction and has given me a Rx, I can call back and ask for a refill (office visit not needed) even if it has been a long time since he saw me.

I'm sure that there is an issue of trust having been established but it's an approach you may wish to ask about--will he respond to this approach. I expect this will work with a chronic disease where long term use of a med is the norm.

Whether Verap will trigger a cycle is not settled. I've never seen medical reports on the question. On the flip side, I've known a couple of people whose doc kept them on Verap 100% of the time with the outcome if never having an attack. There is much we don't know....
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« Last Edit: Sep 26th, 2008 at 9:09am by Bob Johnson »  

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AfraidOfTheDark
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Re: Need advice regarding my preventive meds
Reply #4 - Sep 27th, 2008 at 9:44am
 
Sorry about the late reply, I'd gotten caught up in getting things ready for a big  fire department fundraiser tonight.

I had taken one dose of Verapamil, then curiosity got the best of me, so I decided to hold off and see what the next day or so would bring. I've had little to no shadows since the other day. I don't know if an October cycle is looming, but time will tell.

I guess one thing that worries me about beginning meds before they are actually needed, is I don't know if the body will build up a resistance to the drugs over time. Does anyone know? Predisone was the first drug I was given, and it would always permanently kill my cycle. After a few years (and this is one or two Pred tapers a year), the Prednisone stopped working so well. It would dull the CHs down, but the CHs would come back with a vengeance as soon as the taper was completed. That's why I was given the Verapamil.
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mandymarie96  
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Bob Johnson
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Re: Need advice regarding my preventive meds
Reply #5 - Sep 27th, 2008 at 11:42am
 
Pred to abort & starting Verap at the same time is the current protocol which is the best approach.

I've never seen a medical literature report which talks about "resistance" developing and, while a few folks have reported such an experience, I put my focus on med reports which pool the experience of many people. Single experiences don't write laws.

Your "nom de plume": when I first moved to Rutherford County, it was so dark that the Milky Way would cast a shadow of my body when taking the evening walk. For a city boy, that was DARK!
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Tobias
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Re: Need advice regarding my preventive meds
Reply #6 - Oct 13th, 2008 at 11:48am
 
Last episode I did exactly this. I started early with the Verapamil treatment. Consequently the (very weak) attacks were gone nearly immediately. So I wasn't really sure if I was in an episode or not since not even alcohol triggered attacks. So I stopped to take Verapamil and soon I had a serious problem. The attacks were more severe than usual in the beginning of an episode and it took a long time until the Verapamil worked again. I wouldn't do that anymore...

Quote:
I've never seen a medical literature report which talks about "resistance" developing and, while a few folks have reported such an experience, I put my focus on med reports which pool the experience of many people. Single experiences don't write laws.


Never read about that either and did not experience it myself.

Tobias
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Bob Johnson
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Re: Need advice regarding my preventive meds
Reply #7 - Oct 13th, 2008 at 2:33pm
 
Since Verap. does not work quickly, the experiment of taking one day and evaluating the next won't work. Varying with the person, may take 7-14 days to be able to judge.

Whether to take depends on your judgment how much disability you experience. Some docs and patients use immediately when signs appear, other counsel that short/light cycles are not worth using preventives. (I've just started the first burst of attacks since 2005 but I'll not bother with a prevent. because the cycle will be so short.

Moses has not come off the mountain yet and I believe that the idea that Verap can trigger a cycle is not yet settled.

If nothing else, the variety which comes from living with our little friend keeps us alert!
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Bob Johnson
 
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Re: Need advice regarding my preventive meds
Reply #8 - Oct 13th, 2008 at 7:47pm
 
just the contrary about building a resistance with verp in terms of it taking it early..it takes about a week for the levels of verapamil to actual get to point to start working. if you start and stop before episode finishes it can be hard to start back up. if you feel shadows more than before and its close to "that time" than go for it. start building up the med so a ch doesnt break through. I rather be safe than sorry. IMO..
now if you always have minor shadows when your not in cycle and youve been pain free longer than usual(compared to other years) than hold off and get some o2 in case...well get the o2 no matter what. its a life saver. good luck..
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