How many anti-epileptic drugs did you... - Epilepsy Research...
How many anti-epileptic drugs did you try before your seizures were controlled?
So far my son has tried Carbamazepine which altered his pitch in singing and made him hyper and agitated. He then tried Lamictal which seemed to suit him well but seizure activity returned. He may only have been on too low a dose but he was taken off medication to see whether seizures were psychogenic. He then tried Epilim and is now on a combination of Epilim and Lamictal. We are interested in trying out the Epilepsy patch.
I have tried 4 Tegretol, Lamotrigine, Epilim and Keppra from the age of 13 till 25. I am currently on Keppra & Epilim which has kept me stable for 4 years now.
My consultant tried me on about 6 different drugs. I can't remember them all but they included Keppra, and a low dosage of Lamotrigine (Lamictal) - non of which worked. Then I was fortunate enough to find anew and absolutely wonderful specialist who had infinite patience and put me on Lamotrigine. After building it up a tiny bit at a time (I am now on 200mg twice a day) I am basically seizure free. My first consultant gave up on the Lamotrigine when ti didn't work at the level of 50mg a day!!! It may be worth asking the medics if they would consider persevering with your son on Lamotrigine, Chimbellina.
He is now coming off Epilim and starting Keppra along with Lamictal. I am a bit concerned about all the changes but guess we will just have to wait and see how he adjusts. I always find that in a consultation with the neurologist, it all seems to make sense but the moment we are in the car I begin to doubt or remember what I should have asked!!
A lot! and I am still not seizure free but am now down to one every 3 months or so. I cant remember all of them but I think the figure must be up to about 8 now. They include, carbamazapine, eplilim, keppra (this was awful it made my hair fall out in big clumps!), zonisamide, lamotrigine, toprimate, clobazam. I chose to back onto a topirimate/lamotrigine mix as this controlled them the best and I would certainly echo what ecossaise says about lamotrigine. I have recently started on the new drug retigibine which has only just come on the market so fingers crossed with that one!
i was on sodium valporate 200mg and then 500mg and i was still taking seizures with those two untill i got placed onto tegratol retard 200mg x8 and i havent had any seizures since i was placed on those AED and now im on Keprra for my other epilepsy which is progressive myclonica and im taking 1000mg x2 and im still have the jerks i have with that epilepsy so i would try certain AEDs to see wht has suited you and see if its helping you or not as the doctors will try different types to find the right one.
Three: Keppra; Lamotrigine (Lamictal), which I am deathly allergic to and had to be admitted to the hospital and pumped with steroids and antihistamine to get my body to stop responding after I had a horrendous rash all over my body; and Topiramate (Topamax), which seems to be working well
I have been and still am going through a trial and error 15 years on.... I cannot remember them all, however they have included Epilium, Sodium Valproate, Tegrotol - drained me of energy, Epilum, Keppra - as with Cazza234 - it made my hair fall out too. Phenytoin, I had the rash Alergic reaction to this one. Vimpat, this has had a bad effect on my hormones and so I am now on a current arrangement of Lamotrogine, with a gradual withdrawal of Vimpat and the introduction of Rufinamide. The Rufinamide has reduced my aura's greatly, however in the last two months I have experienced two tonic-clonic after a few years without any and so who knows what my latest drugs/dosage will be. So, my advice is persevere and try to be positive... trial and error may get us there!
I was put on many in the beginning, i.e. Carbamazapine, Epilim, Epanutin, Phenytoin, and probably a few others. I eventually was put on Carbamazapine and Phenytoin and requested they leave me alone and let the drugs get into my system! I have now been on Carbamazapine and Phenytoin for many years, had epilepsy for 39 years and only now gone 13 months seizure free. Is it age, drugs, or other reasons? My mind often wonders. I had allergies to all sorts of medication, but if they stop the seizures, it's worth it!
Hi
I have tried a lot over many years (53) ie Phenobarbitone, Carbamazepine, Epanutin, Epilim, Lamotrigine and Keppra but am not seizure free. The latter 2 have been the best for myself but everyone has different reactions to the medication. Persevere and I hope you manage to find some suitable to control your epilepsy.
My seizures are drug resistant so i
Had neurosurgery in december 2013 and well they are controlled now coz the part of my brain that was causing them is in the bin lol
I have tried 4 - 6 combinations though:
1. Lamitrogine
2. Carbemazepine
3. Carbemazepine + Lamitrogine
4. Carbemazepine + topiramate
5. Keppra
6. Keppra + Carbemazepine.
Thankfully I have been seizure free for almost 3 years now! I've found the cocktail that suits me! 
I have tried nearly them all it turns out they were refactory (drug resistant) so i took a brave descision and had surgery well that was december 2013 and i havent had a seizure since the end of november how great is thet considering i had them nearly everyday
I didnt i was either allergic or they didnt work i ended up having surgery its the best should have done it years ago i am now seizure free after 14 yrs of having them everyday its brilliant not having them
Near enough them all and was allergic to most of them or could not tolerate the sideeffects so i had brain surgery for epilepsy dec 13 its worked no more seizures
I was moved from phenytoin to Tegretol & then Tegretol Retard.
The phenytoin was not completely effective in stopping episodes.
Tegretol was effective but retard is most satisfactory.
As is generally reported, am slowed and 'reduced' by the anti-convulsant.
Do drive though, with DVLA knowledge.
I had tried them all epilim clobozam keppra zonisamide tegretol and a good few others i had brain surgery in december 2013 so far i have been seizure free for 6 months its been the best thing ever well worth it
I have had epilepsy since birth - now 48! And I've been on at least 13 different meds throughout my life! It could be more! And they are still not controlled - still getting them! Just the seizures change each time the meds change! And it seem that the more I change, then the more resistant I become to change! They are seriously now looking to see if brain surgery is an option! Been on Mysoline, Tegretol, and T Retard, Epilim, Lamotrogine (16 years!) Phenobarbital, Gabapentin, Lacosomide, Phenitoine,Lyrica, Topamax, Sabril, Zonegran,; Now on Keppra and Perampanel
I don't know if they are available under the same name as they are here in Canada,, but I've tried about 15 different combinations and strengths of things. There was Tegretol, Lamictal, Keppra, Topomax, Valpro?? (can't remember the whole name), Dilantin, Fycompa, Carbamazepine and Oxcarbazepine. I finally have seizure control using Fycompa and Oxcarbazepine., but I feel very dizzy. My 1st neurologist always said if it came to a choice between seizures and side effects it was better to have seizures. I'm just now starting to appreciate the wisdom in that. I'm just now finding out about the connection between Thyroid diseases and epilepsy and the challenge that medicating both of them presents.
Just like to communicate with you on the subject of choosing between medication or seizures. For about 30yrs no combination of drug worked to control my seizures. I hated the brain fog, poor concentration, etc. so I finally decided to stop the drugs and see what would happen. I practiced yoga, tai chi & meditation instead. Now 10 years later, I'm still getting the seizures regularly, as before, but now my brain is clear, my thinking processes are more efficient and I have so much more energy and vitality, and much more in touch with myself. For me I am so pleased I made this decision. Although I may get knocked off the ladder both physically & mentally for about 2 days after each seizure, I feel I am in control for the rest of the time.
Cheers. Michele
I've tried a lot of drugs to control my epilepsy but to no avail. I take 5 drugs at present but the old ones work best for me.
I have tried a couple of tablets, and i've had some heavy response from them. That was topimax to supress the tegretol, and clonazepam to do the same. For me I started smoking cannabis when I was 11yrs old, and if I hadn't I don't think I'd be alive now. The cannabis made understand my epilepsy, and what nicotine, caffeine and alcohol were doing to me.
I have been on at least 17 different drugs and combinations throughout my whole life! Since the age of 13 I have always been on at least two drugs at one time. I am now 50. I was born with epilepsy -so was on medications from day three of my life! The problem is now that they have run out of drugs for me! I am waiting for more to come out here in the UK! I think that my body is becoming more resistant to drugs!?! I am going for my 3rd VNS op in two weeks - the Aspire SR. My seizures are still not controlled - but I think I am having more problems with long term side effects.
Hi my name is shasha-lee. I'm from South Africa. I was first diagnosed with partial epileptic seizures at the age of 16. At the age of 6 years old I had a brain operation. I was born with a malfunction. Arnold chiari malformation,due to early delivery. 7months. I've been through like thousand of anti-epileptic drugs. Like Degranol,Thegratol,Lamotragine...I can't even keep track. Because my seizures are so life threatening....I'm currently on Epilim...500mg in the morning and 600mg in the evening. But what I found out is that the Epilim is messing with my hormones...like for instance my menstruation cycle is totally thrown off 😔...and its really annoying. Thank you guys for sharing your story. Hope mine helps❤️
Between the years of 1977 - 1989, I did try all of the AED's possible, but none of them worked for me, so I ended up having brain surgery instead in 1989. This worked until I were age 22, of which my epilepsy returned, so I got put back on medication being Tegretol Retard, then went seizure free for 19 years, until Nov 2017 in which my epilepsy returned AGAIN! I were taking a total of 1400mg tegretol, so this could not be increased any further. I am now taking Keppra along with my tegretol.
It appears that I have become some what 'drug resistant' to tegretol, and if I get stressed/anxious, this is enough to tip me over the edge and have a seizure, hence now being on Keppra.
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