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oyeks (@oyeks)

Seizures despite medication

Epilepsy & Seizures | Last Active: May 12, 2020 | Replies (15)

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@jakedduck1

@oyeks
Hello,
Yes, There are many other epilepsy drugs some are for Generalized seizures others are for focal seizures.
Do you know what type of seizures your child is having?
How long has s/he been on Tegretol?
Has the physician ever tried different medications or increasing the strength or adding additional medication to it?
How long has your s/he been having seizures?
It can take a long time to find the right medication or medication cocktail.
After 44 years my seizures stopped for whatever reason. I am currently on Tegretol & Phenobarbital. Well actually the brand I take is Carbatrol (both are Carbamazepine) which is a brand name extended release form.
One thing which is very important in people with epilepsy is that if you start on a generic you should stay on a generic and always make sure you get your medication from the exact same manufacturer. do not switch from brand generic generic to brand or between different manufacturers. Although some people are able to switch and not have seizures I’m not one of them and I know many many people who are very susceptible to the differences and have breakthrough seizures when they try to change. Hospitals always switch you to a generic so if you go to the hospital either take your own medication or demand your particular brand or manufacturer are used. they will normally confiscate your medicine and hold it in the pharmacy and dispense it that way which is fine just be sure it’s the same that you regularly take. I have known a lot of people who went to the hospital and started having seizures and when they were switched back to their usual brand or to their usual manufacture their seizures stopped.
There are over 30 different types of seizure medications, some strictly for generalized seizures some strictly for focal seizures and some for seizures within those broad categories and some for specific epilepsy syndromes.
If I were you I would ask your Neurologist for an extended release version of Tegretol and I also ask him if a second line anticonvulsant would be beneficial. i’d also ask if an increase in Tegretol is a possibility.
Is your child having the Tegretol level in her blood measured on a regular basis at the lab? If she’s not get it done. Som Neurologists think that it only needs to be done once a year, in fact I had a neurologist who said that and I said I want it checked now and he refused so I drove to my primary care doctor in a nearby city and she gave me the order however about halfway to to lab I had a focal seizure fortunately my mom was with me and she got the car off the road and stopped. But I crawled over the top of my mom and walked out onto the highway thankfully a security guard helped get me back to safety. My blood level was 2.9 it should’ve been 14. Don’t think for a second that doctor didn’t get all and more than he deserved. Doctors aren’t gods although many of them think they are. if you’re not getting adequate treatment move on and don’t look back.
I wish the very best for your child and for your family I’m sorry that s/he is going through this, i’ve had Epilepsy for 53 years.
Jake

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Replies to "@oyeks Hello, Yes, There are many other epilepsy drugs some are for Generalized seizures others are..."

Dear all,
I am truly happy connected to this great platform,all your ideas are quit encouraging and are welcome,
My child case is not a focal seizure but each time it occurs she fell down and her body became stev and she jeck say like 2-3mins after which she will fell asleep for like another 10min though our doctor did not specify the type as per say but i think going to the lab is necessary, she has been on tegretol for almost a year now,