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slhaas

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Topamax - Will I get used to it?
Apr 13^th, 2010 at 3:37pm

So, my latest cycle hit, and Verapamil was not helping in the slightest. O2 was lessening the pain some, but I was catching the night hits too late. The generic Imitrex wasn't working so I switched back to the brand stuff, which is actually CHEAPER with my insurance (wtf), and that works. I thought Prednisone and verapamil were doing the trick, but when I tapered off the prednisone they came back, so now I tried topamax for the 1st time.

Well, it's good and bad. Im on a small dose of 1 25mg pill 2x per day. Im wondering though if I can cut that back to 1 25mg pill at bed time only. I figured I wouldn't see the side effects with the low dose, but I was wrong. The good of it is that it started working on the headaches IMMEDIATELY. The bad is that I'm irritable, a bit of a space cadet (which isn't so good in my line of work), sensitive to smells, irritable bowel to be polite, and the most annoying thing is that things taste funny. In particular carbonated beverages are awful. Soda tastes like Im drinking car exhaust and I had a beer that tasted like liquid metal. I also felt drunk after 1 beer.

This isn't good as I am quite the fan of the frosty brew. I have a trip to Jamaica in two weeks to an all-inclusive resort and I planned on enjoying quite a few beverages while Im there. I don't want to pass on the inclusions or suffer from headaches, so I'm not sure what to do. Maybe load up on imitrex for the trip. I've read that you get used to the taste issues though. Can anyone with experience say how long it takes? How about stopping Topamax. How long until I'm back to normal? Any other suggestions? What about the interaction with alcohol. Will that change too, or will I be a lightweight when Im on topamax?

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« Last Edit: Apr 14^th, 2010 at 2:48am by slhaas »

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neuropath

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Re: Topamax - Will I get used to it?
Reply #1 - Apr 14^th, 2010 at 11:45am

You seem to be a rare case, since alcohol does not seem to be a trigger for you and since a relatively low dosage of Topamax appears to work within a very short period of time.

Some of the side effects you describe become less prominent over time. However, the fact that carbonated drinks will taste stale will not go away while you are on Topamax and the consumption of alcohol while on it is not recommended, since it can amplify some of its side-effects.

You will probably find few here with meaningful advice on how to manage alcohol consumption during CH cycles. Given that for most here it is trigger No.1, the way most people manage it is by simple not going there.

When coming off Topamax most people recommend tapering off in 25mg intervals every 5-7 days.

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neuropath

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Re: Topamax - Will I get used to it?
Reply #2 - Apr 14^th, 2010 at 11:46am

You seem to be a rare case, since alcohol does not seem to be a trigger for you and since a relatively low dosage of Topamax appears to work within a very short period of time.

Some of the side effects you describe become less prominent over time. However, the fact that carbonated drinks will taste stale will not go away while you are on Topamax and the consumption of alcohol while on it is not recommended, since it can amplify some of its side-effects.

You will probably find few here with meaningful advice on how to manage alcohol consumption during CH cycles. Given that for most here it is trigger No.1, the way most people manage it is by simple not going there.

When coming off Topamax most people recommend tapering off in 25mg intervals every 5-7 days.

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slhaas

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Re: Topamax - Will I get used to it?
Reply #3 - Apr 14^th, 2010 at 12:34pm

neuropath wrote on Apr 14^th, 2010 at 11:46am:

You seem to be a rare case, since alcohol does not seem to be a trigger for you and since a relatively low dosage of Topamax appears to work within a very short period of time.

Some of the side effects you describe become less prominent over time. However, the fact that carbonated drinks will taste stale will not go away while you are on Topamax and the consumption of alcohol while on it is not recommended, since it can amplify some of its side-effects.

You will probably find few here with meaningful advice on how to manage alcohol consumption during CH cycles. Given that for most here it is trigger No.1, the way most people manage it is by simple not going there.

When coming off Topamax most people recommend tapering off in 25mg intervals every 5-7 days.

Yeah I am a strange duck. Some alcohol can be a trigger, but it's usually managable. When Verapamil is working, for example, alcohol doesn't trigger the CHs. I cant/dont drink much because of the implicaitons of drinking while on Verapamil, but the trigger is gone. Beer hasn't been a sure trigger for me anyway... it's 50/50. Vodka on the other hand hits about 99% of the time.

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Fox

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Re: Topamax - Will I get used to it?
Reply #4 - Apr 18^th, 2010 at 2:40pm

I tried Topamax in 2006, starting at 25 mg per day. Extreme dehydration (drinking and peeing all day), lizard skin and bad taste (coffee and toothpaste were the worst for me) were annoying enough, but the stupor, stupidity and confusion were too much. I stopped after 12 days. It's hard to say if it helped at all, since my cycle ended it's typical 30 day schedule. GP wanted to ramp up Topamax to 2 x 25 mg per day after 2 weeks, but we never got there. I chose to not get used to it.

YMMV.

If having a beer or drink meant spoiling a day in paradise with a CH attack, I would pass. Easier said than done, and I'm not sitting in a chaise by the beach right now, or craving something to wash down a good, spicy jerk. Some years ago when a cycle hit while I was on vacation in New Orleans, a few beer-induced hits set me sober in a land of indulgence, with plenty left to indulge.

Be careful and enjoy your trip, PFDANS the whole time.

Fox

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JHK07 CH.com Junior Offline I Love CH.com! Posts: 98 Gender:	Re: Topamax - Will I get used to it? Reply #5 - Apr 19^th, 2010 at 1:45pm I eat 50 mg of Topamax every night. good stuff for me. stick it out for awhile if your side affects are tolerable. I enjoy a cold beer too. I have noticed on the topamax that i don't enjoy so many..... has curbed my appetite to over do it.
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kidfam CH.com Newbie Offline Posts: 5 x0\|Wetumpka\|USA\|\|0\|0\|AL,Alabama Gender:	Re: Topamax - Will I get used to it? Reply #6 - Apr 28^th, 2010 at 4:10pm Between the Topamax and the Prednisone everything tastes terrible and I have no appetite. Save for one thing Ginger Ale actualy tastes ok believe it or not. Want to loose weight? Take these damb pills. Can't say they really help my clusters
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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Topamax - Will I get used to it? Reply #7 - Apr 28^th, 2010 at 5:15pm Hmmm....the vast majority of people who take prednisone report voracious appetite and weight gain while taking it.
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Redd CH.com Sponsor Offline Posts: 8457 Stevens Point USA Wisconsin Gender:	Re: Topamax - Will I get used to it? Reply #8 - Apr 28^th, 2010 at 9:08pm Topomax is a med like any others we take. Effect us all differently. I didn't have a good experience with it, but there are some who swear by it, BarbD as a matter of fact, and she'd never go without it. Only YOU can decide if the side effects are worth it. Some get them some don't.
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Batch

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Re: Topamax - Will I get used to it?
Reply #9 - Apr 28^th, 2010 at 10:26pm

We're all wired differently when it comes to cluster headaches and what works best as a preventative...

In analyzing comments on abortives, it appears oxygen therapy and triptans are universal winners. In the case of oxygen therapy, if it's used early with the right equipment and flow rate and there are no other co-morbid conditions that lower the arterial pH, it has the highest level of effectiveness and the shortest therapeutic time to abort.

Preventatives are a horse of a different color... All preventatives carry a risk-reward ratio that needs to be understood before embarking on any one regimen of medication. In short, you need to ask yourself and your doctor, if the results of taking any one or combination cocktail of preventative medications is worth the side effects...

Make sure you get a full and complete expanation of the possible side effects before you agree to an regimen of preventatives... Ask if you'll feel better overall when not under the stress of an attack just to be free of the pain? If the answer is no... look for another regimen or a good yardstick of effectiveness.

The ongoing survey here on CH.com illustrates a very real comparison of the effectiveness of preventatives. What it lacks in my opinion, is the impact of side effects. For example, verapamil has proven to cause heart problems that require frequent EKG's if your PCP or neurologist is up on the latest clinical study results... Depakote or "dopeykote" as many of us call it... has side effects that make continued use questionable when contrasted with it's benefits...

Be critical in your analysis of what medication works and the side effects you must endure while using it...

Please believe me... I know it's hard to be analytical when you're running from pillar to post with head-banging cluster headaches... but when you take the whole situation into account, what works best with the fewest side effects is usually the best course of action..

Take care,

V/R, Batch

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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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black CH.com Old Timer Offline I Love CH.com! Posts: 347 Greece,Athens Gender:	Re: Topamax - Will I get used to it? Reply #10 - Apr 29^th, 2010 at 3:19pm Years ago when i was on trileptal or seroxat i was having a vodka in a bar with full stomach. Not feeling drunk at all and just fine,bam suddenly i passed out on the floor. what i want to say is that if meds are not supposed to be mixed with alcohol,don't get it lightly,there is a good reason for it.
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AdoreInVegas CH.com Junior Offline Posts: 51 Sin City, Baby! Gender:	Re: Topamax - Will I get used to it? Reply #11 - Apr 30^th, 2010 at 2:45pm Hubby had to stop the Topamax for the exact same reasons. He doesn't drink alcohol so can't speak about the alcohol effects. He was switched to Depakote and that seems to work well if he takes it at bedtime. During the day, yeah, Dopeykote for sure! lol.
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wimsey1

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Re: Topamax - Will I get used to it?
Reply #12 - Apr 30^th, 2010 at 4:24pm

Tope never worked for me. Ditto the voluntary alzheimer's reactions....words just slipped into the well of lost souls and I couldn't retreive them. Got frustrating. Especially when I was so frustrated and I'd say, "W@ha@t's that?"
And my wife would say, do you mean the chair?
Oh, yeah. It's called a chair. I knew that. Just couldn't retreive the word.
Anyway, if it works for you: GREATT! If it doesn't, ditch it. There's other stuff out there. Blessings!

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Mike Bernardo CH.com Veteran Offline I Love CH.com! Posts: 231 Chesterfield, NJ Gender:	Re: Topamax - Will I get used to it? Reply #13 - May 5^th, 2010 at 6:12pm OMG. I just posted this question today. I'm on week 3 of Topamax and soda tastes nasty, I gave it up. I thought it was flat. and I had beer for the first time this week (cant' drink it during a cycle) and it tasted flat. Thanks for confirming my beliefs.
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icepick

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Re: Topamax - Will I get used to it?
Reply #14 - Jun 24^th, 2010 at 4:50pm

To say I was spacey on Topamax is an understatement. Plus, lost 13 pounds in two weeks. According to my neuro, she won't even prescribe it any more b/c 95% of her patients are saying the same thing. All the side effects mentioned and typically ineffective on CH. Have you tried Lyrica? Same family, but highly effective for me. And for the abortive times -- have you tried Zomig? I found that to be far more helpful than Immitrex (which made me feel like I was having a heart attack and only delayed the CH attack for a few minutes). As for alcohol -- I like my red wine but have learned the hard way that I'll pay all night if I even lick a bottle of wine. LOL!

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jayhedges

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Re: Topamax - Will I get used to it?
Reply #15 - Jun 24^th, 2010 at 5:20pm

This is going to sound crazy but I remember telling my Primary Care about a metalic taste in my mouth for two days during my first CH two weeks ago. I wasn't on any meds but about 5 days into the fist CH everything tasted like metal. Couold it be the. Now I'm on Pred and Vera and my apetite is good with very little taste issues. o2 saved me after 10 days, including an er visit and wprking with a very helpful doc who had know idea how to treat me until "i taught her" thanks to this web site. Red Bull and o2 'til the cycle stops bring it on Beast...I'm ready for your sorry ass!

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icepick

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Re: Topamax - Will I get used to it?
Reply #16 - Jun 24^th, 2010 at 5:27pm

Are we all the same? Some variation of the name for "it." I call it the demon. After discovering this site I had to bust out laughing because I finally feel like someone understands. Don't you love when your friends say "you need a new computer chair, that's the problem. Just tension. I get a headache too sometimes when I'm working on the computer too long and don't take the time to stretch." I see that everyone experiences what I call the "fog" or the "shadow". That little whisper that lets you know the demon is there, lurking, waiting for the opportunity to spring on you. And when I was on Topa, I ha that metallic taste too. That is, when I wasn't heaving.

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RuVa

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Re: Topamax - Will I get used to it?
Reply #17 - Jun 29^th, 2010 at 7:12am

Man, the more topamax I take and the more I read up about other preventatives, the more I feel like I should quit preventatives completely Sad

I finally booked a meeting with my new neuro, but it won't be until august 17 until I see him.
Hopefully we'll be able to work out something that doesn't involve taking meds all year around...

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« Last Edit: Jun 29^th, 2010 at 7:12am by RuVa »

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