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Topic: topamax???? (Read 339 times) |
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phishphan
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topamax????
« on: Jan 30th, 2004, 12:50pm » |
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anyone have any success stories/horror stories related to this drug??
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thomas
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Works wonders for Blake - Jackie's husband. It was very bad for Unsolved.. Tiania has a thread on the med board about her personal experience with it.
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Edski_1
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Re: topamax????
« Reply #2 on: Jan 30th, 2004, 1:06pm » |
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Been working great for me. About three weeks since I've had a headache worthy of treating with a triptan.
There are side effects, and some people can't tolerate it. Ramping up the doseage properly seems to be important, and it seems that doseages above the 100-200 mg a day range and not any more effective given the potential side effects.
Those sides...some impared memory, especially with everyday speech and simple short term memory...some tingling in the extremities similar to having your hands or feet "fall asleep"...some reported mood swings and personality changes...weight loss and appetite changes...grogginess, dopeyness...change in taste and flavor, especially related to carbonation...
But especially for me, I went from having headaches every day, 1 to 3 times ranging from an hour to two, to having a single 30 minute headache 12-15 hours after taking the topamax that gradually lessened in duration, and was immediately far less severe in intensity. I'm still getting occasional shadows, a few HA's here and there...might be stress now that I'm unemployed...but it's been MUCH MUCH better...
And I have not had to touch a zomig for three weeks. A few iburofen have knocked back any minor pains. Imagin that... 
So I, for one, give Topamx a big thumbs up!!!!
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CJohnson
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Re: topamax????
« Reply #3 on: Jan 30th, 2004, 1:22pm » |
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75mg before bed works for me. After a couple of days of trouble putting names to faces, no sides that I've noticed. All but headache free. My neuro said that it seems to be either well tolerated or hardly tolerated at all.
My weight hasn't fluctuated one bit, but my dosage might be smaller than the average dosage. Haven't experienced any dopiness or euphoria or anything like that. The few breakthrough headaches I've had have been during the night, mild, and easily dispatched with squats and cold water.
It should be noted, however, that at the same time that I started topamax, I did the following:
1. prednisone every morning first 5 days
2. verapamil 120 every morning first 2 weeks
3. amerge before bed first 8 days before bed
4. frova before bed 9 days thereafter before bed
PFDANs
-Curtis
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Jackie
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Re: topamax????
« Reply #4 on: Jan 30th, 2004, 2:01pm » |
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As Thomas said Topomax has been a wonder drug for my husband, Blake. He's been chronic for years and it's the first real relief he's had. As to the side effects....he was a little 'dopey' when he first started on the drug and he has lost weight.
My take on it.....give it a try. You'll know soon enough if you can tolerate it.
Good luck,
Jacks 
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Jayne
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Re: topamax????
« Reply #5 on: Jan 30th, 2004, 2:10pm » |
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I know it helped many others, but for me it was a big old "Yuck" I felt terrible on the stuff and was still getting hit nightly. I felt really angry all the time and was quick to be aggresive. I felt really wierd on that stuff all the time, I was so glad to get it out of my system. My doc said in about 20% of patients feel "angry and aggresive" and in her experience that symptom did not go away with time.
I told her "customers will come into the store and ask me questions about a lamp and all I want to do is wrap it around their head" She started tapering me off it that day and put me on my new best friend lithium which for me has only one side affect = NO HEADACHES
whatever you decide..the best of luck to you
Jayne
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ClusterChuck
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Re: topamax????
« Reply #6 on: Jan 30th, 2004, 2:23pm » |
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Be careful about how much you take in the beginning. You have to ramp up slowly. I was in the hospital the first time i was on it, and they started me too high. When I came home, I didn't even know where my bedroom was!!! I was SO stupid (no comments needed!).
It did not work for me, but has been a life saver for many.
Chuck
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athos
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Re: topamax????
« Reply #7 on: Jan 30th, 2004, 4:11pm » |
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Tiannia
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Re: topamax????
« Reply #8 on: Jan 30th, 2004, 4:57pm » |
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For me I guess it is a little of both. I just started taking Topomax last Tuesday at 25 mgs for a week at night. Bad timing on my part got food poisoning at the same time. Ended up in Urgent care two days latter becuase I was completly dehydrated, stomach cramps and vomiting uncontrollably. Well a week later I was still getting sick all the time could only keep maybe one meal down a day but the HA where better. I was still getting woke up at 3am but it was not a K8 only about a K5-6. 20 hours after taking the topomax I was feeling better. but worse as well. I would usually get my 5pm HA - hit hard K8+. and my9pm HA. I decided to up to the 50mg like was prescribed on Wed night. And I was right back to where I was when I went to urgent care. Started vomiting again really bad. Felt like I could not breathe, stomach cramps again and such. So I called my doc and have stopped the topomax. I would rather deal with the HA then feel like this 24/7. Living with CLuster Headaches, is just that for me, living between the headaches. I refuse to live feel doped up and non functional all of the time.
Good luck to you,
PFDAN
Tiannia
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jadedgazer
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Re: topamax????
« Reply #9 on: Jan 30th, 2004, 10:16pm » |
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I had good results with it for quite a while, but the beast figured it out and I had to change drugs.
There are quite a few threads concerning Topomax over on the meds board you might want to check out.
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Jackie S.
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BarbaraD
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Re: topamax????
« Reply #10 on: Jan 31st, 2004, 6:52am » |
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It put me in (semi) remission for years (since 99). But a few months ago it quit working, so I've stopped it for now - may go back after I visit my neuro.
Side effects on me were miniminal. Some short term memory loss (but I'm OLD). I've regulated the dosage from 100mg to 400mg. On the higher dose (400mg) I got a little suicidal (bad scene), but lowered the dose and things went back in place.
It's been my "wonder" drug.
I'm with Jacks --- Give it a try.
try taking it at night instead of during the day. That way if you get sleepy with it, you're in bed anyhow. I never can take anything during the day..
Hugs BD
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brad267
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Re: topamax????
« Reply #11 on: Jan 31st, 2004, 10:11am » |
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Topomax and I did not get along.... I felt too dopey all the time, and the words I was looking for just didn't come out of my mouth fast enough...
I switched to Zonegran and Gabatril -- both from the same family. No side effects to note. Not sure why my neuro put me on both instead of one or the other, but I trust him by now... He's a good egg.
-Brad
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