Change "Preventative" to "Reduction" Medications

(reposted from another thread for wider distribution)

I have changed my definition of what "works" for me. I am living proof that NO preventative medication actually PREVENTS migraine episodes. We really ought to call them "Reduction" medications instead of "preventative" medications.

All preventatives do IF they are successful at all is REDUCE the frequency and/or intensity and/or duration of migraien episodes.

So a preventative is a success if before taking it, you have intense migraine episodes four times aweek that last 4 hours each (for example) and after taking it, you have intense migraine episodes four times a week that last TWO hours each. THAT is a successful preventative by today's definition.

I ALWAYS have a headache. Every minute of every day - unless I use medical marijuana - hours only of rrelief. I have learned to function with a 2 to 4 on a 10 scale pain - I live with it. What I look for in a preventative is more good days a week - days when I don't go bonkers until after dinner. That is the BEST I have expereinced ... fewer bad days.

Lyrica and Topomax can take me from 5-7 bad days a week to 2+ bad days a week ... and that is a HUGE benefit for me. On a bad day, I can't go out, watch TV, cook ... anything! On a good day, I can often watch a DVD or drive or go out ... as long as I make no more than three stops (errands etc.)

If I make more than three stops while out, I episode. Don't know why, but that is the reality. Even on good day. My daughter and Otis have begun counting stops religiously. So if I am out and stop for gas (one), run in a 7-11 for a Coke (two) and swing by to pick up a few groceries (three) I have to go home - or I will have a migraine episode. Extending myself and enriched environments trigger episodes ... everytime.

I just think it is wise and healthy to accurately define what "works" means with our medications.

Yeah reduction medication is a much more appropriate name for the preventative meds, that is exactly what amitriptyline and a beta blocker have done for me, reduced severity and frequency but not preventated them, really valid point there Richard.

Wish I would have known that when all this started. I think I would have been less tolerant of side-effects of anything. If I have to take something else to combat the side-effects of a drug that "may" help, forget it. If the drug isn't tolerated well on it's own and isn't effective then why bother with it?

Thanks for the info though Richard.

Heelertlady - I agree. I wont' take preventatives anymore (unless they come out with something new that sounds promising--never give up). Fortunately, my abortives work. Richard is right. They reduce, not prevent migraines, so you have to weigh the pros and cons of the drug--whether it helps enough to make it worth it.

Hi Richard,
you're doing a good thing, I agree 100% with your plan!
My experience with preventatives (only anti-depressants so far) has not been successful so I agree that adding drugs to drugs is only harmless for our general health.

Take care

P.S.: I like your new picture!!!! Casey and you look WONDERFUL!!!

Absolutely right Richard. So much false hope has been given through talking about "preventatives". It's as bad as talking about cures.

I'd just like to have some reduction!
or even an effective abortive!
and what's all this talk about rescue meds?

Sorry, I'm having a really bad few days.

I agree. Nothing works 100% all of the time.

Richard, you are so spot on. "preventative" medication is a mis-leading word. I also like your philosophy about less meds is better. Today my PCP just dropped one of my meds b/c we both agreed it wasn't working so why keep it. And he said the exact same you are saying "less is better".

I have been bleating on about just this for a long time.
Guess you said it better than me Richard.
Well said....

Oh and in my experience, they dont even reduce...
Loads of side effects and no relief.
But maybe I am just really unlucky there.

what about so called rescue meds that stop working completely if used too often or only kill the migraine for 24 hours leaving you with a worse migraine when a migraine finally does break through? That's been my experience with triptans. I'd like someone to find a cure, it seems all the medicine available doesn't work that well.

I've just put this on another thread too but thought it belonged here aswell.

When drugs are tested to be migraine preventatives the outcome they look for is a 50% REDUCTION in frequency OR severity of migraine. Then the drug is considered a success. So your neuros and drs all see a success as this reduction. For patients the expectations are (unrealistically?) higher and so a lot of frustration arises.

Amy

So from what you are saying Amy, if Richard is right, they shouldn't be called Preventatives.
To prevent is to stop. Okay so they might stop some, but no wonder we have false hope.
50% is good, but not worthy of that tag. methinks.

What I don't understand is that if they can prevent 50%, why can't they prevent 100%? Why can they prevent just some of them? That is why I question how well they really work. I do know that when I have used an abortive to "prevent" they have worked 100% of the time.

I guess that's because abortives are targeted specifically for pain, or with triptans at constricting the blood vessels and thus reducing the pain. But none of the preventatives were actually intended for migraines, it just happens they've been found to reduce/prevent them in some people.

Liz

pen wrote:So from what you are saying Amy, is Richard is right, they shouldn't be called Preventatives.
To prevent is to stop. Okay so they might stop some, but no wonder we have false hope.
50% is good, but not worthy of that tag. methinks.

Well, you could look at it from the angle that they PREVENT 50% of migraines occuring or its severity, so from that angle 'preventative' works just fine. I don't think it matters so much what they are called, or which angle you take, more that people don't expect a cure or have unreasonable expectations of what is possible. What is 100% guaranteed in life itself, let alone drug treatment? (Can only think of death).

Of course 50% is just a clinical trial cut off point for a positive outcome, and many people have better success rates than that. Just as many have 0-49% effectiveness. For some 40%, for example, may be life changing. What is acceptable to the individual is what is important when deciding to stay on a preventative that works to some degree.

For me I think I would stay on a preventative with minimal side effects (to me) for a reduction in frequency or severity of about 20% - one day in five without pain or more manageable pain each day would be worth it to me. If the drug had severe side effects in me I guess it would need to be more effective for me to stay on it - maybe 50-60% reduction in frequency or severity. I guess we all set our own limits consciously or subconsciously.

Amy