Please tell me all about Topamax

[Endless]

What can you tell me about ramping up on Topamax? How long before it starts to have a big effect?

I've been on 25 mg 2X/day for 4 days, and so far no big difference. I think. I'm not sure. It's the only AED my neuro has me on. Keppra didn't work out. (reference my rather raging prior post in another area - sorry.)

Unfortunately, right now I do feel kind of stupid, and kind of anxious. I'm having trouble sorting out what's the E, what's a side affect of the drug, and what's me just being emotional about the situation I'm in. Is it possible to have a drug side effect after only 4 days on a low dose? The fear seizures are rather obvious to me, as is the confusion after the other types of seizures. All the rest is a muddle. I have no idea what is caused by what.

How do you sort it all out? I think it matters what's what, to tell if my meds are right.

 

[Nakamova]

I haven't tried Topomax, so I can't reassure you one way or the other about the side effects. But in general AEDs are powerful meds, and can definitely have an affect fairly quickly even at low doses. And some people are sensitive even to what are considered "subtherapeutic" doses. For a lot of people there's a period of adjustment and then side effects fade. For others, of course, the side effects don't go away and/or become intolerable.

Since there are a lot of unknowns, it's a good idea to keep a detailed record of how you are feeling. Write down what time of day you take your dose, whether you take it before, during or after a meal, and when you are most aware of of the "stupid" feeling or any other potential side effects. Are there times of day when you feel better than others? Is your sleep affected? Does anything you do (like exercise for instance) make you feel better or worse? Do the effects seem to be changing from day to day?

It may be a pan, but this kind of record-keeping can make it easier to get a handle on what's going on, and can be useful for your doctor too.

 

[Zoofemme]

I just started taking topamax a month ago, primarily for headaches but the doctor wants to see how I do on it and she may try to wean me off of one of my other meds and replace it with the topamax. I would recommend doing as Nakamova has suggested; that is what my doctor is having me do since she is looking for other triggers for both my migraines and my seizures. I started noticing side-effects right away with the topamax but then I usually do with AEDs. I get the numblies, have problems with finding words, fatigue/drowsiness, and fully understand why they call it DOPAMAX. I'm also clumsier than usual which is pretty bad to begin with, lol, and have balance problems. A LOT OF FOOD TASTES HORRIBLE! The one positive is the weightloss...weight had been a constant battle for me with the other meds I'm on. So far I haven't experienced anything I haven't been able to deal with...dilantin, on the other hand, kicked off a status episode where I couldn't stop seizing and ended up in the hospital, ugh.

 

[seizingbeauty]

Here's what I can tell you so far. I'm on 50 mpg evenings since December. It took about a week before the "tingles" in my hands kicked in. The sensation goes on and off in my feet. I lost my appitite as everything tasted like metal/battery for the last couple of months. I've lost 15 pounds and been fighting to eat enough to stay healthy. My tastes are begining to finally return to normal but its slow going. Within the last 3 weeks I've had mood swings from hell but as you said don't know weither thats from the E ,
the Keppra (2000 mpg), or just life being a ...(fill in the blank)
I see my MD tomorrow and we'll see whats what then.

 

[Cint]

I take Topamax- 200 mg., along with Keppra-3000 mg. They call Topamax-Dopamax. It can have the effect of making people feel stupid, mainly because of memory loss, aphasia, etc. When I initially started taking it I had no appetite and lost 20 lbs. and I think it is the Topamax that makes me thirsty all the time.

SB- it's probably the Keppra that's causing the mood swings or Kepprage.

 

[Endless]

One thing I love about this place is it makes me feel so NORMAL.

I'm feeling better today. I feel less like my head is stuffed with cotton. The good news is the fear seizures have gone away, as have the weird smells and the blanking out, etc. I still can't think and problem solve very well. I'm having problems even managing my meds and my life, let alone thinking about going back to work, which I had hoped to do by now.

I've started keeping a diary, as suggested. Hope my Dr. doesn't think I'm a nut for doing so (read, hypochondriac <sp?>). But I think it will help me sort all this out.

Not all of this is bad. Five days on Topamax and I've lost 2 pounds. For me, this is a very good thing!

Hey... just out of curiosity; on the Keppra I had a complete loss of filters and inhibition. No filter on anger, shopping, eating, swearing, etc. I ate a lot, spent a lot (and I mean a LOT), swore a lot. On Topamax it's the opposite. I don't want or do anything. Kind of apathetic. No spending, no eating, no talking, no action, no nothing. I'm a bump on a log. Anybody else had that experience? And what's it like when you're on both??? :banana:

 

[seizingbeauty]

One thing I love about this place is it makes me feel so NORMAL.

Hey... just out of curiosity; on the Keppra I had a complete loss of filters and inhibition. No filter on anger, shopping, eating, swearing, etc. I ate a lot, spent a lot (and I mean a LOT), swore a lot. On Topamax it's the opposite. I don't want or do anything. Kind of apathetic. No spending, no eating, no talking, no action, no nothing. I'm a bump on a log. Anybody else had that experience? And what's it like when you're on both??? :banana:

I'm on both, never had the reaction to Keppra your referencing. But since starting the Topamax, apathetic is a pretty good decription. I'm either higher than high, lower than low or don't give a damb about anything...

 

[aboizd1]

I've been on Topamax a year. I take a low dose of 125mg and I get most of the side effects you can get. Over the year I have been much more tired, very slow with words, had tingles, and have lost about 35 pounds.

But..I have recently figured out that by going to bed/waking up at a decent time and taking my meds at the same time each day- i feel way better. I use to be a bit spuratic. it's also given me a better apetite. And if I feel like a nap i take it!

if all else fails -and you need some cheering up- "need up music" is a great thread in here, it will give you a smile

good luck, aboizd1

 

[tam bam]

Hi,

I am on 300 mg of topamax per day. Yes, it can cause memory loss and weight loss but it is better than seizures in my opinion so I put up with the side effects. It has helped me. I have never tried Keppra. Actually one doctor wanted me to take me off Topamax and try me on Keppra but I told him no (this was several years back). My epileptolgist told me to stay on Topamax he said it I could probably use a tweak in the dosage though. The memory problems and oh yeah as you go up it can also make you feel very tired. This you have to be willing to put up with also but all AED's are like this from what I hear. It is just something we have to deal with I guess. A lot of the side effects of Topamax go away with time though (e.g. the stupor part goes away in about a week or two or a least it did for me). Hang in there.

tam bam

 

[jackiepannell]

Topamax

I am on topamax 200mg day. My dr has changed my dose several times within three months and it has been at this does now for about a month. I do have problems with memory loss and I seem to be tired and weak all the time. I did have the tingeling in my hands, feet and lips when I was taking 300 mg a day. I was put on topamax for headaches but they did not help them and they dr has just added more meds to it. I have not experienced any weight loss yet, but I am sure it has to do with one of the other medication has a side effect of weight gain ! I must say, I do not want to eat and usually my husband has to make me. I also have to push myself with the fatigue because I am tired all the time. The part the bothers me the most is the memory loss! I have a really hard time remembering what I did the day before or what day of the week it is. This really is a trial and error, you just have to find what works best for you. It is really hard. I know, because I am still working on finding what works for me. I wish you the best. May God bless you! I will keep you in my prayers! :e:

 

[Jen]

Brother went through hell with that. I can't quite remember his top dosage, but he had no control whatsoever on it. The worse side effects were loss of hair, he got extremely dizzy and fell down when walking up the stairs, and the one he hated was when he drank cokes and such, it tasted like metal. I've heard that it works for some people, but if it really doesn't work, be sure to tell your doctor. Some meds work for others, and some don't. Its all about finding the right dosage.

 

[Endless]

Well, the topomax seems to be working, and I'm not even at full dose yet. I've only had a couple of breakthrough seizures, and I think I've identified the triggers for those.

But now my ears are ringing with a high-pitched ring almost nonstop, and it's driving me nuts. I'm sure it's got to be the topamax. Does anybody else have this problem? Is this a common side effect? My eyes also feel weird. My vision is a little bit like an impressionist painting. I think it's worth it to get rid of all the other stuff.

 

[Nakamova]

Tinnitus is a less common side effect of Topomax. Any chance you can back off on the dose slightly?

 

[Endless]

Aha! It's NOT the topamax. I figured out the trigger. It was a brain training website one of my doctors (not my neuro) suggested. It has a couple of puzzles that I thought might have triggered me, so just to test the theory I went back this morning and repeated it and sure enough, ringing ears and this time a headache thrown in for good measure. Darn it. I didn't think I was photosensitive. I guess I am. I'm definitely not going back to that site and I'm going to be more careful about flashing lights of all sorts.

 

[Endless]

After reading about everyone else's experiences with Topamax I'm finding this a bit odd. The first week it made me sleepy and dopey just like everybody else. But this week it's making me feel just like I'm on speed. I'm jumpy, hyper, shakey, etc. About 2 or 3 hours after I take the pills it feels like my body is vibrating out of my skin. I can't sleep at night, can't sit still. At the same time I'm just exhausted. If I don't get some sleep soon I feel like I'm going to drop for good. This stuff isn't supposed to do this. What's going on? !

 

[Zoofemme]

Endlesssea, yes, that edginess, fidgety thing can be a side-effect as well as insomnia. I re-read the insert when i refilled my RX a couple of days ago. I'm having issues with the "anger" one. Last night did not go well between hubby and I. I don't know whether I should try to fix it today or not or to just let it go for a day or so. I asked him this weekend if he wanted me to call the dr. and go off of it. He said to wait and see if the side-effects subside because it is doing a great job controlling my headaches which were sucking the life out of me. Also on the plus side I have lost 11 lbs that I REALLY needed to get rid of, lol.

 

[Endless]

Grrrrrrrrrr......... I went to the doc yesterday and he said that topamax doesn't do that and that it is stress and to take some melatonin to get to sleep. what a load of $@*#. Because by mistake I missed a dose of topamax and it all got noticably better. This is also now my 8th day with a headache. I've maxed out on how much imitrex I'm allowed to take. Doc told me to keep taking vicodin, which I hate to take because the possible consequences scare me. yet i've taken it for 4 days in a row now. I've laid in bed with my head and neck packed in ice on and off for 8 days. My ears won't quit ringing this LOUD high pitched ring. I've had it.

What happens if you just quit taking this stuff?

I wish Epilepsy is something you could just chuck away and laugh about later with your friends, like a bad date gone strangely and horribly wrong.

 

[seizingbeauty]

I agree that you MD is full of .... but don't just stop your meds! it has a really bad habit of making your seizures go haywire (personal experiance). I would recommend finding a new MD ASAP. I went through a bunch before finally settling in with my current Neurologist.
I went last week, told him what was going on and he immediatly switched me off of Topamax to Epival. Been weaning myself off one onto the other and the difference is amazing!
Unfortunalty this is not just going to go away like a bad date but on a bright note you can either fake your way out of the really bad date or give it a couple of days and you won't remember it anyway (sorry demented sense of humor:twisted
Cat

 

[Endless]

Thanks, Cat. I just took your advice and called three other neurologists' offices. It will take over 2 months to get in to any of them as a new patient. That's way too long. I'm going to call my family doctor and see if there is any help for me there. Also will call my current neuro again and see if I can get him to listen to me.

It is so hard to stick up for yourself when you don't feel good. I'd rather just lay down and curl up in a ball.

 

[Nakamova]

Good luck with neurologist dating process (there are a lot of bad matches, but keep at it!).