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BDinbo
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Topamax-Decreasing Dosage?
« on: May 1st, 2004, 5:23am » |
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For Anybody Whose Taking Topamax:
Is it safe to lower my dosage that I'm taking of topamax if my CH's ended about a week ago? I still have some shadows but I think the cycle is over. I had about 2 days that were completely pain free, but now back to some shadows(that I can deal with) & haven't even lowered dosage yet. These side effects are driving me crazy & I won't see my neuro for another 2 weeks.
I'm still taking 150mg/day, do you guys think I'll be in the clear to drop it to 100mg/day and then 50/mg shortly after?
Thanks-Brian
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Lizzie2
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Re: Topamax-Decreasing Dosage?
« Reply #1 on: May 1st, 2004, 9:51am » |
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Hey Brian,
I don't know anything about when you should start tapering meds after CH's end, but here is an article on proper tapering schedule:
http://headaches.about.com/cs/prevention/a/topamax_dos.htm
Best of luck!
Lizzie
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HypnoticFreddy
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Re: Topamax-Decreasing Dosage?
« Reply #2 on: May 1st, 2004, 11:20am » |
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Brian,
Topamax stopped my cycle a little over a month ago. I was up to 175 mg/day. Since then I have been tapering off. I have been reducing my dosage at 25 mg every 3-4 days. I am now down to 25 mg at night. I haven't had a shadow or a CH since one week into Topa therapy. I am lucky.
So reduce slowly. And see if it effects your CHs. If the CHs come back, increase your dosage of Topamax (that is if you can take the s/e's).
-Scott
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Edski_1
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Re: Topamax-Decreasing Dosage?
« Reply #3 on: May 1st, 2004, 4:49pm » |
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I continued to take 100 mg a day for about a month into what you describe: several completely PF days followed by what I figured were shadows.
Due to fiscal constraints I discontinued pretty much cold turkey, and have been fine for a month.
My suggestions would be this: wait a little longer until you start decreasing the dose. A week sounds too quick to delare victory. Also, from what I read, you should not do the cold turkey if your dose is more than 100-150 mg a day. What I did was probably foolish, and I got away with it. It's probably not a good model to follow.
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HypnoticFreddy
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Re: Topamax-Decreasing Dosage?
« Reply #4 on: May 1st, 2004, 7:17pm » |
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Edski is right about that. It is never good to suddenly stop taking any pyschotropic medicine period.
Yes, we have all done it here or there and some of us (me) have gotten away with it. How about the opposite?
My good friend decided to instead of taper up his dosage of Zoloft, which I believe you will usually start at 25 mg, he started taking 200 mg. A few weeks later, he was in a pysch ward. Often with manic-depressives, a sudden binge of high dosages of anti-depressants taken over a short time can send such a person in a pyschotic mania.
You always need to be careful about suddenly stopping, but also suddenly starting any pyschotropic medicine.
Take care.
-Scott
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toader
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Re: Topamax-Decreasing Dosage?
« Reply #5 on: May 2nd, 2004, 12:48pm » |
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have to agree with Edski - wait before you declare victory
I thought my cluster was over twice now in the past 2 months and got a nasty surprise when tapering off
2 weeks totally pain free is a good goal - no shadows, no nuttin
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BDinbo
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Re: Topamax-Decreasing Dosage?
« Reply #6 on: May 4th, 2004, 2:44am » |
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Thanks for all of the Suggestions!
I've tapered down to 100 mg/day for 3 days in a row now and still pain free except for about 4 hrs where it felt like CH(shadows) moved to other side of head & it freaked me out a little cuz I thought maybe a new cycle was already starting since my cycles tend to switch sides everytime but pain went away so I was very relieved.
Is 150/mg of Topa considered a high dosage or not really? My neuro acts like it's not and that I shouldn't be getting any side effects at all but I know I'm the moodiest bastard since I've been taking this med. My wife says I'm Bi-Polar now and that I'm constantly snapping at everything & that's why I'm in a rush to taper down. The problem is I know Topa was effective and it's the only thing that's worked for me in the past 6 years, & I'm afraid to be too negative about it so that the doctors won't prescribe it again for me, ya know?
Oh well, at least my pain is away for now. Two weeks ago, that's all I was asking for.
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Edski_1
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Re: Topamax-Decreasing Dosage?
« Reply #7 on: May 4th, 2004, 7:52am » |
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150 mg is not that high a dose overall, but IMO for headaches it is getting up there. From what I read and what my neuro said, 100 mg seems to be the max dose that helps headaches...but quite a few on this board report needing up to 200 mg a day.
As for no side effects, I think either the Dr is trying to placate you, or is unaware. The first time I took 25 mg of Topamax I felt it BIG TIME. And yes, my wife also thought I was moody on the stuff. So I understand 100% your wishes to decrease.
Anecdotally, the reports are you suffer the least side effects when you get to your optimal dose...whatever the heck that might be. After a while on 100 mg I didn't FEEL any side effects, but as I receed from those days I see that I certainly was. My creativity was suffering, as was my motivation for the "little" things in life.
Also, I think that sometimes Docs say some things that are NOT in a patients best interest. My neuro said that I could be on topa "forever" with no problems...I was instantly suspicious of that point of view. With the possible side effects of blood acidosis and kidney stones, why would I want to stay on this stuff "forever"?
Again, my suggestion is to stay on the 100 mg for a week or two and try to ramp down to 75 mg (assuming you have 25 mg tablets)...personally I feel that Topa will break a cycle (I seemed to do that for me), so if you have a couple more weeks with only occasional shadows (which may or may not be CH related) then you are probably getting close to the end.
Of course, your mileage may vary...  Keep us posted.
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Lizzie2
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Re: Topamax-Decreasing Dosage?
« Reply #8 on: May 4th, 2004, 9:03am » |
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Trust me when I say they go higher....
At 375mg, I couldn't remember my own name...
I know someone on over 600mg.
Sometimes I start to wonder then if the side effects of the drug are even worth putting up with!
200mg is a very common dose of topamax, but they'll often push to up to 400mg in many cases. I've seen it done many many times..
Lizzie
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BDinbo
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Re: Topamax-Decreasing Dosage?
« Reply #9 on: May 5th, 2004, 5:24am » |
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Hi Lizzie
I couldn't imagine taking 300+ mg/day of Topa. How did you live? I go to work now everyday trying to remember the stupid little things that I used to do everyday and I was only gone for a month. My short term memory is shot since I've been taking it & it's so hard to be back at work, even something simple for example like typing takes me a year now to complete something, my train of thought is gone... so that will all come back to me now of course like everyone says it will while I'll taper down. right?
Thanks, Brian
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BDinbo
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Re: Topamax-Decreasing Dosage?
« Reply #10 on: May 5th, 2004, 6:11am » |
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Edski_1
Thanks for the tips
I'll take your word for it and definitely stick w/ the 100mg/day for the next week or so and not jump down to lower dosage right away.... I do have the 25 mg pills as well so I will try to step down to 75mg at a better time so I won't rush it.
You said that I still might have the occasional shadows that may or may not be CH related.... I just want to understand what you mean...I'm just wondering...do you normally get shadows after a cycle is over with possibly from other form of headaches, migraines,etc that kind of make it hard to determine if your cycle is truly over with?
I'd say I'm definitely episodic w/ CH but I never have those pain free remission periods for weeks or months everyone talks about in between cycles. I still have regular headaches daily and migraines weekly. Is this normal with you & most clusterheads? I may have 1 day a month any part of the year w/ no headache so for me since this last CH cycle lasted over 2 mnths, it's so hard for me to determine if its kicked and these are like regular migraine pains or CH's that are being controlled by the meds that I'm taking. Does this make sense?
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Edski_1
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Re: Topamax-Decreasing Dosage?
« Reply #11 on: May 5th, 2004, 11:38am » |
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Well, it's tough for me to say for sure...I had a bout with CH in the early 90's that was initally diagnosed as such, then the neuro said "it's migraines", and then said "it's just sinuses"...
So details about that cycle are dim...I do remeber having the headaches for at least a year regularly, maybe longer. A lot of things were going on in my life then, starting a career, ending a marriage, so I'm not too sure about what really happened. I do remebr popping A LOT of ibuprofen and sudafed with little to no effect. Snd a lot of people around me saying "it's just stress"...
I sometimes get "residual pain" that will last a day or so after a major attack...not really CH trademark. Most of my other symptoms are pretty standard CH. Except I am lucky and don't get too many nocturnal attacks...but I have been woken up. It's not like they are all daytime attacks. Just far more common for me to get the headaches in the morning, afternoon, and after dinner. But I get the one-sided pain, the need to pace and/or sit rather than lie down, the one sided stuffy nose, and the typical duration (30 minutes to 3 hours) that seem to say CH more than migraine. A few people have described a "rotating" pain center durring attacks onthis site...I've had that in several major attacks.
This past cycle, freshing in my mind, started in mid-October, and really just came up with a pretty serious CH out of the blue...then as they started coming more frequently my wife and mother-in-law prompted me to go to the doctor. The doctor said my headaches were probably clusters, but had elements more common to migraines, and gave me Zomig and Cafergot...not a great combo. A few weeks later I had to go back and get a referral to a neuro. I started on topamax as a preventative in early January.
The issue I have with the "totally pain free" goal, is for me it was very elusive. I'd go a week or so with no pain in my head, then get a couple of days of slight shadows...and reset the clock trying to get that 2 weeks or a month totaly PF. A week or so later the same thing...several of these shadow episodes were days I had job interviews (been out of work for close to 4 months now)...
Which led me to believe that maybe the "shadows" were just a regular tension headache and the pain only "felt" like an on-coming CH...nerve endings "remeber" their pain, so it is not out of the question that the cycle had been long broken, and other factors were causing what I though was a CH shadow.
So I stopped the topamax...took 50 mg (about-had to cut my 100's in half) every other day for a few times...probably used 2 pills that way, and nothing really changed. No major attacks, an occasional "shadow". Had a job interview yesterday, and had that slight discomfort. Had one day last week where I felt tempted to take a Zomig...but I resisted and nothing came fromthe feelings.
So I conclude that my cycle was terminated by the Topamax, and what I occasionaly feel in my head now is just a regular HA now, and my paranoia is tricking me to think that it's a CH shadow. I suppose there's no real way to be sure, as even in the 10+ year "remission" I had, occasionaly a distinct K7-8 whopper. Again, they didn't become frequent, and I just assumed that it was "sinuses" and there was nothing that would help it (stubborn as I am with the medical industry-funny since I worked in the Dental world for 6 years and am hoping to get an IT job at a large Eye Clinic ). When I took my first Zomig it got rid of a pretty bad CH attack in about 20 minutes, and kept me PF for a couple of days...NEVER believed that anything like it existed...
So maybe it's just a case that I can tolerate more pain than a lot of folks. I dealt with the occasional CH with no treatment for so long (as have a lot of people), and I am sure my CH's are not quite as devastating as many suffer...so I guess I'm willing to deal with a K2 or K3 with little complaint, as long as they don't escalate much further.
I just don't really know beyond more than a hunch. And the fact that I have not needed a dose of Zomig since day 2 of my Topamax treatment, even now, 5 or 6 weeks after I stopped taking "el Dopa".
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