Long Term Effects of Carbamezapine

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Hey everyone, I'm a 26 year old living with epilepsy since I was 12, and I've been on carbamezapine in varying doses since then. I'm starting to really feel the long term side effects of it, and I still have around 1-2 simple partial and complex partial seizures every 2 weeks on the regular. The side effects are really starting to effect my work and day to day life, the behavioural changes, feeling sort of numb/empty, continuing headaches, clumsiness, shaking/twitching, mood swings, tiredness, inability to concentrate and focus, uncontrolled movements, terrible memory, and sometimes just a difficulty speaking. When I go out, half the time people think I'm drunk with the clumsiness and stuttering/difficult speaking. Even parts of my personality seem different, I don't feel as happy/positive/energetic as I used to be. I feel like every time I talk to my neurologist, they just either increase or decrease my dose, but I don't know if this is just what I have to deal with in order to prevent the seizures? I'm trying to deal with it but lately its just been awful and I feel like its really affecting my life. Does anyone have any advice, or maybe natural treatments I could try? I've considered trying acupuncture or seeing a naturopathic doctor too. Thanks so much, Nathalie

Comments

Welcome NathalieYour

Submitted by just_joe on Mon, 2016-11-07 - 14:38

Welcome NathalieYour neurologist has been trying to control your seizures using one medication. Which is what they should be doing. Most of the things you listed as side effects can also be in seizures. So that may be why they have increased or decreased the carbamezapine. Jazz has made good points. As has Amy Jo. If you like your neurologist fine, That is needed. Along with a good relationship with them. There are many medications ad Amy Jo posted that are mirror images of themselves. They all work.What my neurologists did was rather then treating my epilepsy with one medication alone they coupled medications together. Finding the medications and their dosages can be like finding a needle in a hay stack. But it can be done and when it is they have hit gold. As Jazz posted there are several other things that can be looked at. Different procedures and even diets can help. Always ask questions when you see or talk to your neurologist. All doctors first ask questions. Answer them truthfully. Who have you been and have you had many seizures? Welllllllll good to a point and yes I have had XX number of seizures. Which will generally let them know your seizures aren't controlled and you want better control. I've been dealing with these issues (name a few) lets the neurologist see that you know somethings not right. I want better control of my seizures but I want a better quality of time with everything. Let them know what you want and if necessary be very specific. Hey doc I don't want anymore seizures period. However another question that you could ask is. Will I ever be completely seizure free? The neurologists are to try and get just that. But they also know that there will be people that will never be completely seizure free. I am one of those people. I to have partial seizures. I know Doc worked to get me where I am today. The coupling of medications has done a great job for me. I used to have 3-5 seizures a month. Those lasted 5-8 minutes long. The post ictal time was an additional time period of 15-45 minutes. Keppra reduced them to about 4 seizures a month. Coupling vimpat with the keppra reduced the seizures to one every 8-14 days. It also shortened the seizures and post ictal time too. Now those seizures last a few seconds and nobody knows I have them. So if I can do that by working with my neurologist and looking at all procedures and other medications. You can too. Would you like to reduce your seizures to one a month that is a few seconds long?? You see you have been living and dealing with your epilepsy for 14 years. I have only been living and dealing with them for 50+ years. I have known for years as Doc did that I will never be completely seizure free.I hope this helpsJoe

Welcome NathalieYour neurologist has been trying to control your seizures using one medication. Which is what they should be doing. Most of the things you listed as side effects can also be in seizures. So that may be why they have increased or decreased the carbamezapine. Jazz has made good points. As has Amy Jo. If you like your neurologist fine, That is needed. Along with a good relationship with them. There are many medications ad Amy Jo posted that are mirror images of themselves. They all work.What my neurologists did was rather then treating my epilepsy with one medication alone they coupled medications together. Finding the medications and their dosages can be like finding a needle in a hay stack. But it can be done and when it is they have hit gold.  As Jazz posted there are several other things that can be looked at. Different procedures and even diets can help. Always ask questions when you see or talk to your neurologist. All doctors first ask questions. Answer them truthfully. Who have you been and have you had many seizures? Welllllllll good to a point and yes I have had XX number of seizures. Which will generally let them know your seizures aren't controlled and you want better control. I've been dealing with these issues (name a few) lets the neurologist see that you know somethings not right. I want better control of my seizures but I want a better quality of time with everything.  Let them know what you want and if necessary be very specific. Hey doc I don't want anymore seizures period. However another question that you could ask is. Will I ever be completely seizure free? The neurologists are to try and get just that. But they also know that there will be people that will never be completely seizure free. I am one of those people. I to have partial seizures. I know Doc worked to get me where I am today. The coupling of medications has done a great job for me. I used to have 3-5 seizures a month. Those lasted 5-8 minutes long. The post ictal time was an additional time period of 15-45 minutes. Keppra reduced them to about 4 seizures a month. Coupling vimpat with the keppra reduced the seizures to one every 8-14 days. It also shortened the seizures and post ictal time too. Now those seizures last a few seconds and nobody knows I have them. So if I can do that by working with my neurologist and looking at all procedures and other medications. You can too. Would you like to reduce your seizures to one a month that is a few seconds long?? You see you have been living and dealing with your epilepsy for 14 years. I have only been living and dealing with them for 50+ years. I have known for years as Doc did that I will never be completely seizure free.I hope this helpsJoe

Welcome NathalieYour neurologist has been trying to control your seizures using one medication. Which is what they should be doing. Most of the things you listed as side effects can also be in seizures. So that may be why they have increased or decreased the carbamezapine. Jazz has made good points. As has Amy Jo. If you like your neurologist fine, That is needed. Along with a good relationship with them. There are many medications ad Amy Jo posted that are mirror images of themselves. They all work.What my neurologists did was rather then treating my epilepsy with one medication alone they coupled medications together. Finding the medications and their dosages can be like finding a needle in a hay stack. But it can be done and when it is they have hit gold. As Jazz posted there are several other things that can be looked at. Different procedures and even diets can help. Always ask questions when you see or talk to your neurologist. All doctors first ask questions. Answer them truthfully. Who have you been and have you had many seizures? Welllllllll good to a point and yes I have had XX number of seizures. Which will generally let them know your seizures aren't controlled and you want better control. I've been dealing with these issues (name a few) lets the neurologist see that you know somethings not right. I want better control of my seizures but I want a better quality of time with everything. Let them know what you want and if necessary be very specific. Hey doc I don't want anymore seizures period. However another question that you could ask is. Will I ever be completely seizure free? The neurologists are to try and get just that. But they also know that there will be people that will never be completely seizure free. I am one of those people. I to have partial seizures. I know Doc worked to get me where I am today. The coupling of medications has done a great job for me. I used to have 3-5 seizures a month. Those lasted 5-8 minutes long. The post ictal time was an additional time period of 15-45 minutes. Keppra reduced them to about 4 seizures a month. Coupling vimpat with the keppra reduced the seizures to one every 8-14 days. It also shortened the seizures and post ictal time too. Now those seizures last a few seconds and nobody knows I have them. So if I can do that by working with my neurologist and looking at all procedures and other medications. You can too. Would you like to reduce your seizures to one a month that is a few seconds long?? You see you have been living and dealing with your epilepsy for 14 years. I have only been living and dealing with them for 50+ years. I have known for years as Doc did that I will never be completely seizure free.I hope this helpsJoe

I've been dealing with

Submitted by scaredypants19 on Sun, 2016-11-27 - 02:52

I've been dealing with similar side effects but I'm on keppra and oxtellar but even though my seizures aren't very frequent the twitching and clumsiness is more frequent Maybe we should see new doctors I myself plan on looking into alternative treatments..maybe you should too but also try a new medication altogether for your mood swings (that's something I don't have btw)

Hi Nathalie. I have been

Submitted by Kevin from Calgary on Wed, 2017-03-08 - 01:13

Hi Nathalie. I have been taking carbamazepine (or tegretol, the brand name version) for about 35 years. I have also been taking phenobarbital for 40 years. I was diagnosed at 14 but I was known as "Kevin the klutz" before then. Have you always been clumsy? I don't think I have any side effects from it. I never get headaches. I know that's surprising for a person with epilepsy. I have petit mal seizures about once a year so my meds do a great job. I do have a bad memory and always have so I saw a forensic psychologist when I was 40 for an exam of four hours each day for two days. Very in depth. He concluded that my memory is "normal". I think everyone thinks they have memory problems but I keep forgetting to google it. :) I am not tired because my seizures revolve around my sleep. If I were to stay up all night then go to work I would definitely have a seizure so I am very careful about my sleep. One thing I want to make very clear to you is that you should NEVER stop taking your meds without the advice of a DOCTOR!!!!!!!! Not a naturopathic or acupuncturist. People die doing that. Never. Very important. Do not switch dosage or meds without your neurologist or doctor's advice. One thing to keep in mind is that your life is better with meds and side effects than without meds. I wish you well. Kevin