Topiramate anyone...

[Jop92]

Hey, so I was just wandering if anyone is on Topiramate at the moment, has been or knows someone who was/is on it?? If so, how did you find it? I may be moving onto it, but don't know much about it & sometimes what the Dr says isn't enough... Can anyone help me out?? X

[Hidden]

Hi Jop92,

Thank you for your concerns regarding Topiramate. Regarding I am not on it, but I always find Google on internet a great source for research to find out more about a drug. The doctors don't say much about the drug, but if given a new tablet to take or told they are changing me onto anything, I always do a 'hunt' on internet to find out more.

Hope this helps.

Les

[Jop92 in reply to Hidden]

Thanks for your input, I have been looking it up on Google, coz yeh I agree it's always good to check it out before you change medication.

[Hidden in reply to Jop92]

Hi,

I always do research on any drug name given to me, no matter what it is. I am currently on Carbamazepine and Phenytoin, it works like a bomb. I have been on it now for several years and am well controlled.

Good luck with the Topiramate and keep us informed.

Regards,

Les

[monaco1]

I was on it for about 15 months, and found that the side effects on me did not stabilise. Mornings I was ok but feeling heavy till about 1PM, then I started going very tipsy and dopey; the extremes were quite sudden, till I took it in the evening; then I got better within 60 - 90 minutes after taking. I just couldn't do anything in the afternoons! Seizures were still happening. It just didn't settle or stabilize with me. However, my story can't be the only one!

[Jop92 in reply to monaco1]

Thanks for your reply, it sounds like it didn't really work for you at all - I'm sorry. I'm thinking of changing coz of side effects I'm having atm, don't really want worse side effects... hmmmm, defo something to take into consideration - thank you!

[kmfrere in reply to monaco1]

Hello Monaco; May I please ask if you are taking something else that is helping with your seizures and has minimal side effects? Best Wishes to you!!

[monaco1 in reply to kmfrere]

Hi there: now I am on Keppra 1250mg AM &1000mg PM; also Eslicarbazepine / Zebinix 800mg PM. My body is a little heavy, but that heaviness eases throughout the day. I start feeling more vulnerable in the afternoon - as if something wants to happen; feel as if I have little energy left. Side effects are causing me to slow down. Slow down - less seizures; try and concentrate more and use my brain muscles more - then I provoke seizures!

[Hidden]

I was on this drug but very briefly, as it caused me hideous side effects (if they were on the "Contraindications" section of the leaflet, I had them) and did nothing to control my epilepsy. It was one of only two medications that were tried that I was forced to stop taking (on advice from my own GP) without speaking to my neurologist first and gradually "ramping down".

[Jop92 in reply to Hidden]

Aw, your story sounds like when I was on Keppra... I get that feeling of having to change and not fun at all! Thanks for your reply and I'm sorry that you had to go through that horrible time, I can imagine it was rough to say the least...

[BBerry]

Hi Jop

I've had no probs on this for some time which I hope gives you some reassurance. I know a new drug is always a leap of faith. I would say stick to one brand and keep your fluids up though.

Take care BB

[Jop92 in reply to BBerry]

Hey, thanks for your reply, I must say it does give me some reassurance, so yeh thanks.

[DarrenC]

Hi ya, I was put on toprimate back in 2006, to supress the tegretol that was ten folding my nervous system, from the stimulation as a anti depressant. I simply gave up taking it, and told neurology I wasn't going to take again. As per usual neurology didn't seem give the slightest care. Extreme ignorance toward my daily understanding I have of my epilepsy. It is a very physical condition, my heart & soul control my nerves, my muscles can give also give me restraint from heightened nerve activity. Exercise is the key to epilepsy.

[Jop92 in reply to DarrenC]

Sorry, did you give up the topiramate or the tegretol? I'm on tegretol atm and that might be 1 of the drugs I change to go onto topiramate, I'm guessing they didn't work well together if you gave one up?

[jules1973]

Hiya i was on topiramate a long time ago but i couldnt stand the side effects it was that bad i couldnt stand and was hospitalised

[Jop92 in reply to jules1973]

Oh gosh! I'm hoping those days (of being hospitalised) for me continue to not reoccur, so don't want to go on a drug that may bring them back... thank you for your input!!

[jules1973 in reply to Jop92]

I did go down the route of having a temporol lobe lobectomy in dec 2013 as all the tablets were not working turned out the epilepsy was refractory drug resistant am still on tegretol and zonisamide and have been for the last 4 or 5 yrs with no side effects or anything and hope to be off medication sometime this year brain surgery was a complete success best move i ever made 😊

[DarrenC]

I was on Tegretol, and was put on toprimate to supress the side effects of the tegretol. The side effects of the toprimate was intense, and I simply gave it up. The side effects of panic with atmosphere, destroying my social life, from the tgeretol along with intense anxiety and depression was to much. Exercise strengthened my natural highs from the endorphins in my body, relaxing the emotional stresses, that the stimulation from the tegretol was causing. I demanded that I should be taking a drug to relax my body, not a stimulant that was doing exactly what my epilepsy is doing. Strengthening my heart and soul, was taking the panic out of my mind. Strengthening my muscles was creating a positive structure, against the heightened nerve activity from my epilepsy. I understand that my body is no different to a car, my muscles control the stress in my body, my heart and soul control my emotional & logical senses (ie) my nervous system. Testosterone is the purity of man (ie) logic!! & oestrogen is the purity of woman (ie) emotions!!, the reasons we have marriage in this world. To create perfection between a man & woman, so are heavenly father blesses you in the church, creating unification between you. So a mans love for his wife creates the understanding of his emotional feelings, and a womans love for her husband creates logical confidence. Creating perfection in the raising of your children. I have gained understanding that epilepsy is a very physical condition, along with mental affliction.

[Ronamac]

I've been on topiramate for several years, along with Keppra (twice daily) & Clobizame at night. I've now been seizure free for almost 2 years. As with most medication for every positive there have been side effects. I experienced a pins and needle sensation so now I'm on a planned reduction of topiramate with the neurologist and my GP. It can also affect your mood, I've experienced this and it gives you an almost continued anxiety, as my dose has been reduced the symptoms have too. I was on 125mg twice daily & it was reduced to 100mg now it's going down to 75 at night and 100mg in the morning, with the anticipation of going to 75mg twice daily. I hope this is of some help.

[Dino]

Hi Jop92, I have been on topiramate for a number of years,150mg twice daily,along with phenytoin 200mg in the morning and 150mg at night and lyrica 200mg twice a day.I have still had the occasional seizure about 2 a year but nothing like i suffered before i was prescribed it.The only side effect i have found myself is that a couple of hours after taking it i feel very tired and want to fall asleep but this usually wears off after about an hour.

Hope it works out for you.

Dino.

[ahsmus]

Topiramate not good please use regret ol+ lobazam combination

[nicolagreves Volunteer]

I was prescribed Topiramate for about 4 years alongside Tegretol. Although I didn't have any of the side effects described here, it had very little impact on my seizures. I agreed with my neurologist that it simply wasn't worth me taking so stopped it.

Since then we've added Keppra to my Tegretol & I've been seizure free for over 4 years.

Good luck - I hope it works out better for you

[Hidden]

I'm on Topiramate and Keppra and the combination seems to be going well for me. The Keppra on it's own didn't reduce my seizures very much but since being on Topiramate too they have decreased. I've had less migraines too. But everyone's different so I've been lucky to find a combination that works for me. I hope you do too and the side effects aren't too bad!