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Topic: Clarification on Prevents - Please? (Read 418 times) |
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clarence
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Clarification on Prevents - Please?
« on: Oct 19th, 2004, 7:06am » |
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Just to clarify,
When you take a preventative, like Verapamil or Gabapentin, do you take it all year? Or, do you take it only at times?
I ask because, as the name suggests to me, preventative would be something that I would take always in order to PREVENT the cycle, right? But I get confused when my GP and Neuro tell me that I should only take the prevent when my cycle begins. It seems to me that it would then become an Abortive.
Are my docs confusing, or am I just dense? In other words: for how long do you take your prevents?
Thanks,
Casey
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Mr. Happy
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Re: Clarification on Prevents - Please?
« Reply #1 on: Oct 19th, 2004, 7:44am » |
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It's times like this when I hear the infamous "Ask your doctor before you take......" that make me laff my ass off. How are you supposed to make an informed decision, when even your doctors don't agree on usage or terminology?
Don't take meds any more than you have to. Take preventatives at cycle onset. Stop at cycle.....er.........offset??? These meds are supposed to prevent HA's, not cycles.
You're in the UK, right? If you want a good shot at breaking/preventing a cycle, hop on over to one of your local shoppes and try some of those Perfectly Legal fresh shrooms. May not work, but then again it might be an answer for you. Beats taking meds all year long scripted by medicos that can't agree even among themselves.
Good luck,
RJ
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Bob_Johnson
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Re: Clarification on Prevents - Please?
« Reply #2 on: Oct 19th, 2004, 8:45am » |
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It's one of those questions in medicine which has yet to be resolved--but we assume, to our frustration/anger, that medicine has an answer for every question.
One of the leading headache docs in the U.S. keeps his patients on Verap for years, even when they have not had a cycle for ages. Chicken-or-egg question until some good, long terms trials are run.
I suspect that most docs following the pattern you report: use preventives only when you start an active period.
The survival issue is: learning how to live with ambiguity! If we don't master that one, life becomes an endless burden.
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Bob Johnson
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DerbyDemon
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Re: Clarification on Prevents - Please?
« Reply #3 on: Oct 19th, 2004, 11:42am » |
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My neuro has me on Verapamil year round. I go to higher doses when I'm in cycle; lower when off cycle. The only times I've entered cycle are when I've made the mistake of letting my Verapamil script expire. I will also add that the pattern is applied to Topamax. We classify both as preventative.
Given Bob's post, I'm now hoping mine is one of the best headache docs in the country.
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don
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Re: Clarification on Prevents - Please?
« Reply #4 on: Oct 19th, 2004, 11:44am » |
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Prof. Goadsby suggests going off the verapamil when not in cycle.
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vig
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Re: Clarification on Prevents - Please?
« Reply #5 on: Oct 19th, 2004, 3:25pm » |
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My guess would be to take preventatives before an episode is sCHeduled to start.
If you expect an episode in September, start the verapamil in August.
No need to feed the Pharmaceutical beast year round, they'll survive.
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Gator
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Re: Clarification on Prevents - Please?
« Reply #6 on: Oct 22nd, 2004, 1:40am » |
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Terminology-wise: Preventatives are to (hopefully) prevent the headaches from occurring in the first place.
Abortives are to abort the ones that get through.
As far as when to take prevents, Prof. Goadsby is THE man. His word is good enough for me. As soon as I actually find a prevent that works and if this cycle ever ends (been about a year now) I'll do just that. 
Gator
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kcorrigan
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Re: Clarification on Prevents - Please?
« Reply #7 on: Oct 22nd, 2004, 3:13am » |
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I've been on Verapamil for about 7 years now and am terrified of getting off of it. If I don't take it for more than 72 hours I start getting HAs, but am able to abort the cycle after about 48 hrs after starting back on it.
Does it help? Who knows? I know that I still am seasonal. 3 years ago I had a cycle in June/July which has never happened before, also while on Verap.
Damned thing about those demons... they cannot be put into a pattern, that's for sure...
'Night.... 
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pubgirl
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Re: Clarification on Prevents - Please?
« Reply #8 on: Oct 23rd, 2004, 6:33pm » |
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Not only does the Prof G recommend that episodics should come off the Verap when they are comfortable that their cycle is over, he also recommends that chronics should take a Verap "holiday" every few years.
The increasing evidence that Verap/prevents generally may worsen our condition makes this all the more sensible in my view.
The only trouble with starting your Verap when your cycle starts Casey is that by the time you've got the dosage right and achieved the prevention, your cycle may be ending naturally anyway, depends how long your cycles are. Since mine are only a few weeks long, I personally won't touch ANY preventives. I never say never, but right now I stick with abortives only.
Just to be controversial ALL the chronics I know reckon it was preventives which made them go from episodic to chronic.
Wendy
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Kris_in_SJ
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Re: Clarification on Prevents - Please?
« Reply #9 on: Oct 23rd, 2004, 9:02pm » |
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Hi Casey,
Technically, preventative means just that, though it's certainly not as simple as that. Verapamil is a preventative for many because once the doses are high enough that it starts working, it does tend to decrease the intensity and frequency of the HA's - shortening the cycle.
I stayed on Verap at 120mg/day after my last cycle (3 yrs. ago), partly because of my hypertension. It didn't prevent my most recent cycle from happening, but the cycle was alot shorter (4 wks rather than 2 months). I got my doc to ramp me up to 480mg/day once I realized the beast was back, and it seemed to kick in pretty fast.
Kind of a "double-edged sword." This time, I'm trying to wean off Verap altogether. Mostly because I worry about building up a tolerance to it. So, we wait and see ....
Sorry no easy answers!
Kris
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clarence
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Re: Clarification on Prevents - Please?
« Reply #10 on: Oct 24th, 2004, 8:48am » |
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on Oct 22nd, 2004, 1:40am, Gator wrote:Terminology-wise: Preventatives are to (hopefully) prevent the headaches from occurring in the first place.
Abortives are to abort the ones that get through.
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I guess that this pinpoints my confusion. When we say "prevent," I had thought we were talking about "preventing" a cycle. The message I am getting now is that this is not the case. Rather, "prevents" are to prevent headaches while in cycle. Is this correct?
If this is the case, what is Pred? Is it to prevent headaches in cycle, or is it to abort a cycle? If to abort a cycle, is it an abortive, or are abortives to abort headaches, not cycles? Or is this question stupid and ignorant?
Finally, I have arrived at this state of blissful confusion because I was on Gabapentin for just over 2 years (I think), during which time I thought it was to prevent me from getting hit with a cycle. (And I beleive that it was at least somewhat effective).
<On a side note, one of my greatest frustrations in life is the fact that language is not a constant, but rather a set of symbols that point to objects or concepts beyond themselves. There is not a one-to-one correspondence between a word and that which it represents, at least when it comes to actually talking to people. For instance, two people call the same thing by 2 different words/symbols, or refer to 2 different things with the same word/symbol. This issue is often the bane of my research. Enough venting about that.>
Casey
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| « Last Edit: Oct 24th, 2004, 8:50am by clarence » |
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pubgirl
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Re: Clarification on Prevents - Please?
« Reply #11 on: Oct 24th, 2004, 8:57am » |
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I understand completely what you are saying Casey, makes loads of sense.
but I can't answer your question because I personally believe preventives (and I include steroids here although it is claimed they "break" or end cycles) actually only DELAY cycles to a later date, and abortives abort the pain for now until the attack comes back.
Just my view of course.
Wendy
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clarence
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Re: Clarification on Prevents - Please?
« Reply #12 on: Oct 24th, 2004, 3:14pm » |
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So Wendy,
Just to clarify, you only use aborts? I am sure that you have listed this before, but do you use the Imigran? The Oxygen? I am just curious, because I wonder if the sumatriptan prolongs the cycle as well. Oxygen wouldn't really, as it is totally natural.
This has probably already been discussed before. Just curious.
As for the steroids, I really don't like them. I take them, and I eat like a freaking hog, and then 10 minutes later I am still hungry. I eat more, so I gain weight while I take them. Other prevents I have taken I haven't really liked, except the gabapentin. I thought it was pretty good. The doc just had me on methysergide, and I asked to get off of it after about 3 weeks. I wasn't more hungry, or eating more, just gaining weight, and feeling all airheady and forgetful. If I am going to gain weight because of a med, it better be because I had to eat food. I hate it all. I hold out hope that something works, and that I might be able to get some combo that is right, but for now I am on no prevents, and the Imigran for an abortive. (Was on the O2 but then ran out, and my doc gave me a new Rx, and it was wrong. I will only be here for 10 days, I probably wouldn't get any O2 in time).
I am really thinking seriously about your suspicions Wendy. Especially because one of my great fears is going Chronic. And this cycle has lasted longer and been more intense than any other I have ever had (about 11 weeks now).
Thanks,
Casey
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pubgirl
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Re: Clarification on Prevents - Please?
« Reply #13 on: Oct 24th, 2004, 4:19pm » |
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Yes, I stick with 02 as my primary abortive and Imigran if it fails or when 02 isn't convenient.
I'm not sure about the 02 being better than the Imigran from the point of view of number of attacks. I prefer it because I stay mainly drug free and can use it as many times as I like, but since the mechanism of aborting the pain is the same (vasoconstriction) it possibly means that if Imigran doesn't decrease the number of attacks, just postpones them, ANY abortive including 02 possibly does as well.
My personal philosophy is very simple:
I don't want to risk worsening my condition
I don't want to take drugs
I can't cope without pain relief
Therefore I abort with 02 and take no prevents.
It IS that simple for me, but we are all very different
Wendy
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Kris_in_SJ
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Re: Clarification on Prevents - Please?
« Reply #14 on: Oct 24th, 2004, 8:20pm » |
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Sure is easy to become confused about CH terminology, isn't it?
The fact is, when most of us talk about prevents, we're talking about meds that prevent headaches while in cycle. It usually takes these drugs (like Verapamil) a few days to kick in once they're at high enough doses. For some of us, these drugs can significantly shorten cycles and make the HA's less intense.
Prednisone is pretty interesting because in some cases it can completely abort a cycle. But for many of us, it works to stop or lessen the HA's until the meds like Verapamil have a chance to work. For the most part, it is not meant to be used alone - it's only a stop gap until the other drugs work. You're still going to have those high kips (especially if you're episodic) that need O2 or Imitrex or other abortives.
Have I confused you more?
Kris
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