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        New Message Board Archives >> Medications, Treatments, Therapies 2004 >> Prevent vs No-prevent
        
(Message started by: BlueMeanie on Aug 23^rd, 2004, 7:17pm)

Title: Prevent vs No-prevent
Post by BlueMeanie on Aug 23^rd, 2004, 7:17pm

I realize that there are a lot of Chronics out there that take prevents for years and years and years. I also realize that there are episodics who take prevents during their cycles and sometimes long after their cycles have ended.

If you're still getting CH's you know, or at least think, you need them because you're getting CH's. At the same time if you're getting CH's than why keep taking them ?

If you're not getting CH's how do you know the prevent is what's stopping the CH's ?

I'm episodic and quit taking prevents in or out of cycle.
I read all the meds people take and it just amazes me that some people can take that many meds day in and day out. I'm not knocking you Chronics per say because maybe I would do the same thing. I'm just curious.

Putting on my armor while waiting for replys.

PFDAN

Title: Re: Prevent vs No-prevent
Post by eyes_afire on Aug 23^rd, 2004, 7:28pm

It's a good issue that you raise.

For me: I still get some minor breakthrus even when on verapamil. Everytime I have ever tried tapering off verapamil, I get clobbered hard. So, for me, the decision is easier than some others... even though now it seems I'm chronic.

However, here's where things get confusing: I was episodic until I started taking verapamil (with 6 or 7 month cycles every 6 months). Now I can't stop taking it. I have tried tapering at various times during the year when I thought it was safe... can't do it. So, now I wonder if my CH has become acclimated to verapamil. It's a rather frightening thought. Could it be that if I would just taper and survive the clobberings for... oh .... say... maybe 2 or 3 weeks then maybe they would diminish?

I don't know. It's more than physical. CH is 'a breaking of the mind'.

--- Steve

Title: Re: Prevent vs No-prevent
Post by IndianaJohn on Aug 23^rd, 2004, 8:27pm

I have to agree with the acclimation theory. Prior to this current cycle (I'm episodic too) I went on the verap in cycle and came off it when the cycle ended. Then I listened to my well meaning, but uninformed GP who suggested that I take it year round. Now I don't beleive it's effective anymore without going to a higher dosage, which I really don't want to do since I've had trouble with my BP dropping.

The point? I guess that it may be worth it to get off the verap and suffer through the "rebound" so that it will work next time. Potentially very painful, but maybe worth it. In my case, it's someting that I am considering. Your mileage may vary...

Good thought provoking post!

Best Wishes,

John

Title: Re: Prevent vs No-prevent
Post by karma on Aug 24^th, 2004, 7:11am

Its a viciuous circle. pain= medication, more pain = more medication and so on. I am episodic and consider myself lucky after reading what others are dealing with.
This cycle is the first time that I became aware of what was available to treat the pain. I tried Zomig and saw an immediate increase in the number and severity of the hits. Instead of a two week cycle of one serious hit per day which is what I am used to I was getting hit three times a day and 5 or 6 times at nite. I quit taking the Zomig and after two days of agony went back to one hit /day. But I'm now in my fourth week but winding down.
I got started on verap at 480 mg/day for a week and had no seroius hits but heavy shadows day and nite. I'm not sure which is worse, getting hit on schedule or living in the fear of getting slammed at any moment. I have cut myself back to 240 mg/day with the intention of today being my last. This stuff makes me feel like shit.
For me the answer is pretty clear. Try and manage the pain unmedicated and get through it as fast as possible. It may be worth noting that I have an exceptionally high tolerance for pain which may be why I am able to deal with the seroius hits unmedicated except for xanax sometimes.
Like I said I consider myself lucky. For those that have to deal with this everyday I feel for you and have a new found respect because for how you guys deal with it and help others like me.
I wish you all PFDAN.

Title: Re: Prevent vs No-prevent
Post by Fatcat on Aug 24^th, 2004, 8:32am

Very interesting topic and something that is raised often on the UK OUCH message board.

I never had cycles longer than 2 weeks. When I first used Naramig, I noticed that I was in shadow-type pain all day long and my attacks worsened. The particular bout lasted 5-6 weeks and I had periods of shadowing from time to time while in remission.

Since using verapamil, I have been able to come off it for a few months at a time but I rarely feel like i'm in remission. I started taking it in March this year and have tried to come off it once already. A mild attack broke thru so I upped the dose again. Now I'm trying again, but the shadows are getting so bad that I'm increasing the dose again.

Am I going chronic? I'm pretty scared. :-/ The good thing, at least, is that I take such small amounts. I was only taking 180mg at the height of the bout.

Title: Re: Prevent vs No-prevent
Post by floridian on Aug 24^th, 2004, 8:40am

CH is more than head pain. There are metabolic problems that episodics experience year round. Melatonin is messed up year round in most of us. Lot's of us are low in magnesium even if the beast skips a year. I consider melatonin and magnesium as preventives, and take magnesium every day, melatonin whenever my sleep gets messed up. These won't help everyone, but they do help many, and they are making up deficiencies in the body.

Title: Re: Prevent vs No-prevent
Post by karma on Aug 24^th, 2004, 9:10am

I would consider taking suppliments that eliminate deficiencies as a treatment for the problem and not as a treatment for the symptoms. This makes a whole lot more sense than a continuous barrage of medications that don't address the problem.
Unlike a broken leg or a bout with the flu, the treatment for CH pain varies widely with people that suffer from it. I keep asking myself why and the best answer I can come up with is that its because we are treating the symptom and different people react differently to the pain so the treatments are different. Add the fact that most GP's are uninformed when it comes to CH and we have a problem.
I also believe that because the pain is so severe we build up a real fear of getting hit. This can allow the possibility of a serious HA to consume us making it real and more severe.

Title: Re: Prevent vs No-prevent
Post by FZfan on Aug 24^th, 2004, 5:33pm

To me, it seems there are two important questions to answer:

1. How long are your cycles?

2. How many attacks per day when in cycle?

In my case, my longest cycle has been 6 weeks.

The most attacks per day I have ever had is 4.

I made the decision a few years ago that, as long as those numbers hold up, I wasn't going to bother with prevents. This did mean a lot of suffering, but it also meant no side effects to deal with.

Now that I've got o2 working well for me, this strategy works even better. The main side effect I suffer during cycle is from lack of sleep because, even if the o2 completely aborts the 2 am wake-up, my sleep has still been disrupted. I can live with a lack of sleep for 4 to 6 weeks as long as I can abort the attacks.

But that's just my case. If my cycles were longer and the attacks more frequent, I would probably go back on the prevent wagon.

I have noticed that without meds of any kind and with o2 successfully aborting the majority of my attacks, my cycles seem easier to handle.