Topamax

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Rachel.M

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Would like to hear of any experiences with topamax. I'm on 75mg at the moment but don't think I can cope with a higher dose...anyone doing well on this drug?
 
Hi Rachel.

How long have you been on Topamax for?

I was on Topamax from 2006 - 2008, I can't remember what doseage I was on but I took it with Tegretol. I didn't have many side effects while on the Topamax but it didn't help control the partial seizures so my neurologist eventually replaced it with Keppra. The only major side effect I noticed from the Topamax was that I had a lost of appetite & ended up losing about 20kg (44 lb) over the 2 years I was on it. That wasn't a bad thing for me though as before I started the Topamax I was about 90kg (198lb) but got down to approx 70kg (154lb). I am now about 75kg (165lb).
 
I'm currently taking 200 mgs. of Topomax, along with 3000 mgs. of Keppra. I once was on a much higher dosage of the drug, but lost a bunch of weight, so had to lower the dosage.
It is also know as Dopemax, as it can make memory and word finding much worse on higher dosages, but I have that problem anyway since surgery.
 
I tried Topomax twice, but I don't remember the dosage. I was told to take it at night as it would help with my insomnia. It helped with the insomnia alright - it knocked me out - but the next day I woke up with a horrible hangover. (Had I known I might have lost weight, I might have given it more of a chance!)
 
I have been on it since June and I can cope ok on 75mg, my neuro wants me on 200mg. Twice now I have tried to increase to 100mg but I have had to come back down because I get so depressed, exhausted and 'stupid'. My doctor thinks that given my size, (I am 5ft and weigh only 48kg) that there is a chance 75mg might be a high enough dose to stop my seizures. I have only ever had 2 seizures, 6 months apart so could be a long wait to see if his theory pans out!
 
I am very new here and am on topamax for extreme migraines at a 75mg right now. So far we have up'ed the dose every 3 weeks because it's not helping with the pain and then just yesterday I had a seizure (or that's what it seem like since I haven't officially been diagnosed with anything yet). But I'm supposed to increase my topamax each week for 3 weeks to see if it helps until we reach a point of answers.. If that makes any sense. Next week I go up to 125mg and hope for the best! (I have had a migraine for a year and a half straight.. no letting up.)
So yeah, I would like to say I like the stuff the stronger it gets.. :)
 
I was on it for 2 years.... I had a bad experience with it, Kidney Stones, lose of hair and it through my birth control off. I hope it does better for you, I suggest drinking a lot of water! It also changed my taste buds... so don't be alarmed if something taste bad that used to taste good.
 
What dose were you on kellert16? I am mindful of drinking lots of water, and yes everything tastes a bit blah these days! I do worry about kidney stones....they sound awful and to be avoided.
 
topamax

following are my experiences and doctors notes in my experiences with topamax and topiramate.

i did for a while but my insurance wouldn't cover it and made me switch to topiramate. eventually it quit working on me after i moved and i got even worse so now i am on lamactal xr.

topamax is a headache med but is prescribed for seizures because on occasion it CAN work but the way it works is in doses. at 75 it sounds like you are int he very early stages. if you are a bit soggy in the midsection you will need to stock up onw ater and serve yourself on a smaller plate and be very happy cause you will lose some weight!!! :) drink like a fish.

if on the other hand you cant afford to lose the weight, snack like crazy and continue to drink like a fish. if you DONT have high blood pressure you can drink stuff like gatorade. if you do, just drink lemonade with real sugar.

If birth control is ineffective, it needs to be gradually adjusted. do not decrease the amount of topamax.

topamax can have adverse affects on a preganancy so talk to your doctor BEFORE you get pregnant.

for depression you can take sertraline with a booster pill, abilify.

topamax does not work for tremors.

I was on topamax since 2007 and am about to get off it because it no longer works for me.

side effects: I experienced weight loss and frequent thirst

I did not experience kidney stones or hair loss.

topamax should be taken 2x day. it is supposed to be a brand name for topiramate, but for some reason some people respond better to topamax then topiramate. if you hapen to be one of them and insurance doesnt cover it, get your doctor to qwrite a letter to the insurance company explaining that you need topamax not topiramate and the insurance should cover it.

hope all this helps! :)
 
Newgirl- I'm on 100mg now for topamx and possibly going up. I am 5' 8 and 140 pounds. I could loose more I guess. I'm learning to drink like a fish.. but I forget to drink.. I do take topamax twice a day along with my antidepressants (once) and a few vitamins too. Thank you for all that information! So very helpful! :)
I do have some hair loss but I chalk it up to hormones and having babies and stuff.. but this makes sense too :) its not super thin or anything so I'm not worried. Nothing noticeable.

Thanks again newgirl! Hugs!
All my best,
Abi :D
 
rachel i take 400mgs daily 200 morning and night dont ever recommend im not a fan of topamax probably cause of how much weight i have lost in 6 months 50lbs groggy all the time and my kidneys hurt this is the second time they tried it.
 
Rachel.M said:
What dose were you on kellert16? I am mindful of drinking lots of water, and yes everything tastes a bit blah these days! I do worry about kidney stones....they sound awful and to be avoided.
Click to expand...

I was on 600 Mg. I drank a lot of water but still had the.... its like a. 01% will get them so who knows! Good luck!!!
 
Welcome Rachel,
Took Topiramate for almost three years, was added to my Carbamazepine after a third grand mal. Dose started low but ended up on 200 2x/day for a couple years. After a fourth grand mal neuro doubled it but that's when it became dopamax for me. I stuck with it tho with good hope and the dopey feeling wore off after about two months (doesn't for everyone tho).
After a fifth one I ended up with an epileptologist and said I wanted off it; she agreed and switched me to Lamotrigine. Not long after I was ramped off the Topamax i had another one and she 'made' me go back on it. I did not want to, but was totally lost as to wtf was happening so agreed to a small amount. Well the partials stayed just as bad on it so i just said right out, I'm done! Won't touch it again but nothing else is working anyway - working on number 8 now.
No hair loss or kidney stones, lost a few pounds but the best thing was that no matter my lifestyle my weight stayed maintained very well.
All i can say is it's so different for everyone it can't really 'hurt' to give it your best. And most importantly if your neuro tries telling YOU how it's going to be, seek another neuro. Best of luck dear!
 
I have been on it for a little over a year and a half now they have ramped it up pretty slow for me and its been a pretty dopey ride for me at first since the 25mg was the worst i have to say.... I was pretty much staring at walls at work.....people were like Tina what are you doing what did i just say??? I was pretty high as a kite. Lost about 45 lbs though which was not a bad thing in my case in a year still losing a bit due to suppressed appitie. but it did help with the seizures now that I am at a thereaputic dose I am able to cope better. I have found though that I seem to have a lost filter of frustration though a shorter fuse if you will with people. I am usuallly a very patient person not anymore. I really find I need to reign myself in. B-complex has helped with that but that might be becasue I am taking in combo with keppra as well I am taking 200mgs topomax 2x daily w 1500mgs keppra2x daily as well to keep gran mals under control so far so good none since january seems to be holding out well.

Tina
 
Thanks all for sharing your experiences, it's certainly good to know I'm not the only one who has struggled with this drug. I am going to stay on 75mg for now and see what happens, I have been on it since June and have had no more instances of De Ja Vu or seizures (I have only ever had 2 and they were 6 months apart pre medication) so even though it's early days i will hang in there and see how it goes. I have an appointment with my neuro on 20th September and I know that he is going to recommend that I change to Epilem (not sure this is called in America) but I am reluctant to change drugs and risk the side effects again now that I finally have adjusted to the Topamax and feel like my body is back in some sort of balance. Also with regards to driving, the laws here in New Zealand state that if you change your Epilepsy medication you automatically lose your license for 12 months to ensure that you will be seizure free on the new meds. Is this the case elsewhere in the world?
 
OMG no!!! There is no such law, that would be infuriating! In Canada the driving rules are centered around loss of consciousness. That said, every doc is different and some will ask that you stay off the road until your new meds have settled in and you're doing better (but it isn't a set law or period of time, it's only until both you and your doc feel comfortable that the new drug is working). I switched from topamax to lamotrigine last summer and my license wasn't even brought up. You poor thing, that SUCKS!
 
I've been on Topamax for several years - about 2 years ago was switched to the generic topiramate - and it, so far, has been the best drug at controlling my partial seizures. I did notice breakthrough seizures with the switch to the generic, but I can't afford the brand name so I'm stuck with the generic. I wish I had the weight loss issues LOL, but I haven't really noticed anything I can contribute directly to this drug. I'm also on Celexa and Abilify (until recently) for depression, but I've been depressed since I was little, so can't blame that on the Topamax. And a lot of the other physical symptoms I'm having right now (hair loss, edema, leg pain) I've just discovered were related to the Abilify. I stopped that 2 weeks ago, and those symptoms are pretty much gone. :) I currently take 200mg Topiramate in the morning and 300mg at night. I used to take a total of 700mg, again, without any major side effects.
 
I took it and it got rid of my migraines and seizures. I lost weight,,,yeah! But it gave me insomnia so I eventually went off of it.

It also affected my focus on driving which cause me to have an accident . I will never take it again.
 
Hi Rachel,ive been taking topamax since march (I'm now taking 175mg twice a day) and I'm the same size as you. At the start i rang my neurologist and told him i couldnt handle this drug but he told me to push on and it's definatley been the best one for me but it's taken months.I hope it works for you too!!!!
 
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