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Topic: How much Topamax is too much?? (Read 2558 times) |
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hhsams
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How much Topamax is too much??
« on: Jan 25th, 2008, 10:02am » |
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Hi Everyone,
My husband has been suffering from cluster headaches for the past 10 years. We have been seeing a local neurologist and have decided it is time to see a specialist. We are going to Emory in Atlanta on Monday.
My question is regarding the drug Topamax. My husband takes it everyday that he is in his cycle and adjusts how many he is taking based on if and when he gets a headache. He is currently taking 10-12 (25 mg) topamax pills a day along with Imitrex injections as needed. Is this normal that his current doctors ask him to up and down his topamax dosage himself? Is this an excessive number of pills to take everyday, or is it a common amount for other cluster headache sufferers? A friend of ours who is a doctor (a surgeon, not a neurologist) seems to think that is a lot to be taking.
Anyway, I’m interested to know how much Topamax any of you are on and if you know of any serious side effects from the drug. I’m particularly concerned about long term side effects.
Thanks so much for any information you can give. Also, any advice on questions to ask the specialist we are seeing on Monday would be great too!
Holly
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sandie99
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Re: How much Topamax is too much??
« Reply #1 on: Jan 25th, 2008, 10:58am » |
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Holly,
it's great to see a supporter in here! 
Topomax or dopeymax as it's also called... I recall my short topo treatment well. First of all, it made me a walking zombie; I walked, but didn't recall where I was going or forgot why I went where. Not an ideal situation for a student who is writing a disseratation...  Besides, it didn't help me with ch a bit; I got 24/7 pain at ch side (left) first and then I got lots of more hits than I got before the treatment, so naturally I went to see a GP asap and tapered topomax away.
I have been trying to recall the dose I was taking (Spring 2004), but I cannot recall it. I believe that it was very low amount.
Plenty of people in here have tried topomax in one point or another and I'm sure that they'll come to report their experiences shortly.
What comes to the appointment with the doc... my advice: know as much as you can in advance about ch and treatments, so you can tell if the doc knows enough to be able to help your husband and what other treatments your husband wants to try if the neuro mentions something else. With all the illnesses, knowledge is power!
Lots of luck with the appointment, do let us know how it went and lots of PF days to your husband!
Wishes,
Sanna
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| « Last Edit: Jan 25th, 2008, 11:37am by sandie99 » |
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turtlendog
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Re: How much Topamax is too much??
« Reply #2 on: Jan 25th, 2008, 1:09pm » |
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My experience with topamax on a dose up to 200mg is that it didn't do anything but confuse me about which were my symptoms and which were my side effects. And everything else for that matter. I take all of mine at night, and hear that some people split their dosage.
Unfortunately, though it didn't do anything for me when I started taking it, it sure doesn't want to come loose now.
I'm currently on 100 and tapering, but I seem to pay for it when I adjust my dose down.
I wish I'd never seen the stuff.
YMMV
Edit: My opinion of Topamax is somewhat different now that I suspect that B6 may have been blocking Topamax in my case. See this thread for more info: http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;a ction=display;num=1202602947
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| « Last Edit: Feb 9th, 2008, 7:27pm by turtlendog » |
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BarbaraD
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Re: How much Topamax is too much??
« Reply #3 on: Jan 25th, 2008, 2:01pm » |
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I've been on topamax since 99 and swear by it. For several years I was on 300mg a day (I took the whole dose at night before bedtime and did NOT experience the side effects so many complaine about). 400mg was a little excessive for me - I did experience some side effects from that dose and had to cut it back to 300mg.
I'm now on 100mg (maintanence dose) but adjust it to my cycles (high and low). If you take the whole amount at night, I don't think you'll experience the "dopey" feeling - at least I don't. You pretty well sleep it off.
But 300mg is, in my opinion, not excessive if you're getting hit really hard.
Hugs BD
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BaseballCoach
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Re: How much Topamax is too much??
« Reply #4 on: Jan 25th, 2008, 10:34pm » |
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I had gotten up to 300 mgs a day and never really noticed then helping but back then I really wasn't taking my meds regularly so I can't so for sure if they did or didn't help........
I will say I'm now taking 150 mgs a day (75 am/pm) along with pred/verap/and dep and I haven't had a HA in almost 2 months. Something is REALLY working...I have no idea what it is, but sooner or later I'll taper off of something and find out. I think I kind of feel dopey all the time, but I've gotten use to it, lol. If the meds start working, that "dopey feeling" sure as hell is better than those headaches....
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BarbaraD
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Re: How much Topamax is too much??
« Reply #5 on: Jan 26th, 2008, 6:24am » |
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Take the WHOLE dose of topamax at NIGHT and you'll probably lose the dopey feeling.
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coach_bill
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Re: How much Topamax is too much??
« Reply #6 on: Jan 26th, 2008, 3:33pm » |
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just on topamax, been on a week on 50mg now going up to 100mg, so i dont really know about the dopey yet. i will stay in touch with this post. i hope it works for me, i will to do anything or everything to make these headaces stop. good luck with your trip. coach bill
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boy i cant wait till it's my turn to give him a headache. paybacks a bitch
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RichardN
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Re: How much Topamax is too much??
« Reply #7 on: Jan 26th, 2008, 5:15pm » |
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If he doesn't have it already, push for a script for 02 Monday. Requires a 15 lpm regulator and a non-rebreather mask. I can abort an attack in minutes if used early-on in the attack. Works for 70% of us to abort.
02 IS a recognized therapy to abort attacks. Copy the 02 info and take to your doc (in case he's not aware). First-line abortive for most of us.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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richcurtin
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Re: How much Topamax is too much??
« Reply #8 on: Jan 26th, 2008, 10:16pm » |
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I took it for two months. I was convinced it would help by the doctors who prescribed it. It did not help at all. I seemed to get all of the side effects. It was awful! I could not remember words. I got a speech impediment. I had a fuzzy feeling in my head. I looked awful. My skin tingled. I got carpel tunnel in my wrists. I could not think clearly and it affected my work. My balance was off and I felt like I might fall. I started at 25 mg and went up to 100 mg.
I work with a woman that took it for a year for essential tremors. She was up to 400 mg. She had many of the same symptoms. She also stopped taking it.
Topamax is an anticonvulsant. It shuts down brain function. It is being pushed very hard by drug reps. It has a side effect of weight loss (in about 1/4 of subjects on topamax) and my neurologist had people claim they had migraines to try to get a prescription so they can lose weight.
I do not think Topamax should be the first drug to try for CH. due to the side effects and it helps so few CH sufferers.
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5Almigos
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Re: How much Topamax is too much??
« Reply #9 on: Feb 7th, 2008, 5:21pm » |
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Hi,
I've been having daily attacks for the last 18 months. I couldn't tolerate topamax at all. I only started with one 25 mg pill at night and got hit every 3 hours. that got a lot better, when I quit Topamax. I'm currently taking 400mg of Dilantin a day, but that leaves me a walking zombie. My motorskills absolutely suck and my speech is slurred.
I'll try O2, Verapamil and Melatonin next, since I can't take Imitrex.
Good luck to you,
Sonja
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BarbaraD
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Re: How much Topamax is too much??
« Reply #10 on: Feb 10th, 2008, 7:25am » |
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"I" decided a couple of years ago that "I" was going to get off ALL meds and go drug free with only O2 and I did. Worked out pretty well for a little while. Then all hell broke loose! And I thought I was gonna die.
Got back on the topamax (had to graduate UP again and that took time with the headaches coming fast and hard - even with the O2!).
Today, my neuro has standing orders (from ME) giving him permission to use a BASEBALL bat on me if I EVER decide to get off topamax again. During my visits he always shows me my signature on that ORDER and asks if he needs to get the baseball bat.
For those of you who have known me for a long time, you know I HATE taking meds and would give them up in a minute BUT I hate pain (I can endure anything up to about a Kip 8 - then I WANT meds!). I take my topamax without an argument and keep cafergot on hand for those 8s and above. O2, coffee and Red Bull usually work for anything else, but my advice is -- if you find a med that works - TAKE it without a fight - don't suffer needlessly!
Hugs BD
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