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Mike Bernardo

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Gave it the Old College Try
Oct 17^th, 2011 at 11:22am

I'm on Topiramate now, I'm up to 100 mg (50AM, 50PM). I'm already at the point of mild depression, in a stupor 24 hours a day (except for the couple hours just prior to each successive dose when the prior dose is just wearing off), terrible cramping in the feet and lower extremities, tastes changing (not a big deal), forgetting to eat (eh, could be a big deal) and other minor annoyances. I don't think I can tolerate another winter of the cramps and sadness and tiredness of this medicine, even if does help the HA. I'm considering stopping it (tapering of course). Thanks to meeting my deductibe last medical cycle, I do have 24 doses of Sumavel (woo-hoo) and about 60 doses of Cambia, which could easily help me with aborting any massive HA, as well as my usual running, O2, and Red Bull therapy. I know many of you are extremely thankful for the way the preventive meds work, but I just can't tolerate what they do to my life. I'd rather deal with some daily pain, a few bouts of extreme pain, and use some abortive methods. Is that crazy?

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anthony g

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Re: Gave it the Old College Try
Reply #1 - Oct 17^th, 2011 at 11:35am

Nah Mike that aint crazy bro! Whatever work's best for u my friend! I actually tried starting up on topomax last week and was on 25 mg for a week and felt ill effects from it. I feel flu like symtoms just not good all around. I dont know if its the topomax or not cause there is a virus going around here in NY (your in jersey right?) That being said Im gonna stop topomax and up my verapamil after my ekg tomorrow. I was gonna give topomax a shot but from what I hear alot more negative than positive Undecided

This shit suck's
Im here buddy
Anthony

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Mike Bernardo

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Re: Gave it the Old College Try
Reply #2 - Oct 17^th, 2011 at 11:40am

I have good results from it. But I have to get to 200mg
I've been living a much more active lifestyle now than I was before last year, so I'm not ready to give that up because I'm in a constant stupor. Also, it affects my work, which has become more demanding than it was last year. And it's not as if I'm sleeping better with the Topamax. Like I said, when I hit 200mg, the HA does get knocked down, and has stayed down for the duration of the cycle, but at what cost?

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Guiseppi

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Re: Gave it the Old College Try
Reply #3 - Oct 17^th, 2011 at 11:47am

I've said it before, your med choices are about as personal as it gets! Always doing the cost benefit analysis. Have you ever tried lithium? It's my prevent of choice, at 1200 mg a day it'll block 60-70% of my attacks with almost nothing in the way of side effects. Might be worth a shot. Hoping the beasty gives you a short ride this go round.

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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DennisM1045 CH.com Alumnus Offline One wave at a time! Posts: 3437 Haverhill, Massachusetts, USA Gender:	Re: Gave it the Old College Try Reply #4 - Oct 17^th, 2011 at 12:53pm Not crazy at all Mike. Like Joe says, it's an intensely personal choice. You look at the scales and decide for yourself. -Dennis-
Back to top	Where there is life, there is hope. Where there is Oxygen, you must use proper caution. So be safe, don't smoke while using O2. Kill the pain and not yourself. IP Logged

Mike Bernardo CH.com Veteran Offline I Love CH.com! Posts: 231 Chesterfield, NJ Gender:	Re: Gave it the Old College Try Reply #5 - Oct 17^th, 2011 at 1:39pm It's pretty much what I figured, but it's nice to get reinforcement from the troops.
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Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: Gave it the Old College Try Reply #6 - Oct 17^th, 2011 at 4:58pm 150mgs of Topamx here, all at night, helps with the side effects. Went up to 200mg but couldn't find the bathroom. Don
Back to top	Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not. IP Logged

anthony g CH.com Old Timer Offline I Love CH.com! Posts: 318 manhattan nyc Gender:	Re: Gave it the Old College Try Reply #7 - Oct 17^th, 2011 at 5:07pm don topomax help u?
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Skyhawk5 CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 1320 Ypsilanti, Mi. USA Gender:	Re: Gave it the Old College Try Reply #8 - Oct 17^th, 2011 at 9:23pm Anthony, the Topamax seems to be helping some but the jury is still out as to how much. Right now I'm afraid to stop taking it. Don't wish to rock my boat. It's my 1st time on it long term. Daytime hits have been minimal for me on it. Don
Back to top	Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not. IP Logged

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wimsey1

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Re: Gave it the Old College Try
Reply #9 - Oct 18^th, 2011 at 7:59am

Mike Bernardo wrote on Oct 17^th, 2011 at 1:39pm:

It's pretty much what I figured, but it's nice to get reinforcement from the troops.

Mike, I do agree with everyone so far that the meds choices we make are intensely personal and we tend to make those choices as a cost/benefit analysis, but....I would only caution you that if you have been out of the beast's crosshairs for awhile, you can tend to forget how bad the pain really is. It's what drove us to take the damn meds in the first place. Not saying you should or shouldn't drop what you're taking. I am saying when the beast comes aknockin' for real, I'm taken aback at how much I forgot how it really, really hurts. I get hit every day still but very low KIP and very manageable with Monster and O2. I'd rather not take what I take, but while I forget the pain, I remember the screaming and the darkness. Good luck and let us know how you get on. Blessings. lance

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Gave it the Old College Try Reply #10 - Oct 18^th, 2011 at 9:29am . I am saying when the beast comes aknockin' for real, I'm taken aback at how much I forgot how it really, really hurts Thems some serious words of wisdom there...... Joe
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Mike Bernardo

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Re: Gave it the Old College Try
Reply #11 - Oct 18^th, 2011 at 9:40am

Lance, thank you. I think the hard part is, I only had about 3, maybe 4 weeks off in between cycles. I postponed going back on Topamax for almost 2 months during the start up of this cycle due to how it affects me, though I've never had the painful spasms that I've experienced this time (I actually spasmed so bad last night, I fell off the couch). The extreme pain of the HA is not what gets me (and I'm not trying to sound like a tough guy), it's the accumulation of constant pain that wears me down. That's why I think I'm going to try this one cycle with the Sumavel and Cambia and other methods, just to avoid another 4 months of a drunken-like stupor, given I just came off of one. Not to be ridiculous, but I'm running my first marathon in 32 days and I don't want the Topamax to mess that up. The Beast has messed up my life enough.

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