Carbetrol

Thu, 10/31/2013 - 22:54
Does anyone know how long it takes until you know Carbetrol (Brand) is really working? My son had a level taken 7 days after having had his Carbetrol dosage increased. The level is now therapeutic. His seizures have decreased after having been on this new dosage for almost two weeks, however, he still has them. Does it take longer than two weeks to totally appreciate the benefit of this medication, or any medication for that matter?

Comments

Re: Carbetrol

Submitted by GodivaGirl on Fri, 2013-11-01 - 20:54

Hi Pug,

I've dealt with 3 different neurologists in my life and they tried all kinds of medications & combinations before I decided to have my surgery.  Each doctor always told me the same thing as they changed up my meds which was basically unless the side effects were really, really brutal & making day to day life intolerable give the change about 6 months to judge if staying on what they'd given me was gonna be worth it or not.  Everytime they'd gradually take me off one med and phase in the new one - that always took at least a month, sometimes longer.  My doctor in Toronto always told me it takes time for the brain & body to get used to the new combination of meds happening.  Some of the side effects can be brutal, but my doctors in TO and in London are both right, the side effects fade in time and slowly the meds start to kind of work.  If the meds are the right match, they work really well, if not then it becomes add / subtract & sort out the best combination.  Annoying and easier said than done, but hopefully this gives ya a bit of insight. 

Happy belated Halloween & Here's to Epilepsy Awareness Month.

Godiva / Erin 

Hi Pug,

I've dealt with 3 different neurologists in my life and they tried all kinds of medications & combinations before I decided to have my surgery.  Each doctor always told me the same thing as they changed up my meds which was basically unless the side effects were really, really brutal & making day to day life intolerable give the change about 6 months to judge if staying on what they'd given me was gonna be worth it or not.  Everytime they'd gradually take me off one med and phase in the new one - that always took at least a month, sometimes longer.  My doctor in Toronto always told me it takes time for the brain & body to get used to the new combination of meds happening.  Some of the side effects can be brutal, but my doctors in TO and in London are both right, the side effects fade in time and slowly the meds start to kind of work.  If the meds are the right match, they work really well, if not then it becomes add / subtract & sort out the best combination.  Annoying and easier said than done, but hopefully this gives ya a bit of insight. 

Happy belated Halloween & Here's to Epilepsy Awareness Month.

Godiva / Erin 

Re: Carbetrol

Submitted by puglover on Sat, 2013-11-02 - 10:42
Yes, belated Happy Halloween and cheers to Epilepsy Awareness month! I hope your surgery worked for you in terms of a better quality of life. Right now the neuro is taking the slow boat to China approach; keeping all other meds as is and adding in more carbetrol. From what you've said, (it can take six months for the brain and body to adjust), living with seizures requires extreme patience and can really chip away at one's positive frame of mind to remain hopeful. I think for so many, the hope of becoming seizure free changes to the hope of seizure reduction. Thanks for sharing your experience and information; this site is so helpful and the responses are supportive.

Re: Carbetrol

Submitted by just_joe on Sat, 2013-11-02 - 08:55

Morning Puglover

I read your post and your post gives some insite which is good. You wanted to know how long it takesto know of it is working. I it shows a decrease in the number of seizures which is always a good signthen it is working. Once at theraputic level generally doctors want the body to adjust to the new dosage and in doing that most side effects will disapate. Bodies are different and some people will require less medication than others. When my dosages were changed I stayed on that level which showed it working for a month or up to 6 months. The dosage may be working and doing a good job bur adjustion the levels is not as easy as most people think. Depending or the medication and type of seizures your son has would also be what the neurologist looks at to determine whether to increase the dosage or couple another medications with the carbetol.

My neuro coupled my keppra with vimpat bcak last may. The seizures were reduced. 2 months later we increased the vimpat and the increase reduced the number of seizures even farther. I am usine the diary and writting down anything different so he can see the difference and the information also gives him information or dosage increases or other procedures that could be used to get the person under control.  I see Doc againin a couple of weeks and we may be increasing the vimpat dosage again. I can say the medications today are being created to work on types of seizures rather then the entire central nervous system which does a lot to keep people from being drugged out and walking around like a zombie.

I hope your son gets th dosage needed to get him seizure free and this eases your worries

Joe

Morning Puglover

I read your post and your post gives some insite which is good. You wanted to know how long it takesto know of it is working. I it shows a decrease in the number of seizures which is always a good signthen it is working. Once at theraputic level generally doctors want the body to adjust to the new dosage and in doing that most side effects will disapate. Bodies are different and some people will require less medication than others. When my dosages were changed I stayed on that level which showed it working for a month or up to 6 months. The dosage may be working and doing a good job bur adjustion the levels is not as easy as most people think. Depending or the medication and type of seizures your son has would also be what the neurologist looks at to determine whether to increase the dosage or couple another medications with the carbetol.

My neuro coupled my keppra with vimpat bcak last may. The seizures were reduced. 2 months later we increased the vimpat and the increase reduced the number of seizures even farther. I am usine the diary and writting down anything different so he can see the difference and the information also gives him information or dosage increases or other procedures that could be used to get the person under control.  I see Doc againin a couple of weeks and we may be increasing the vimpat dosage again. I can say the medications today are being created to work on types of seizures rather then the entire central nervous system which does a lot to keep people from being drugged out and walking around like a zombie.

I hope your son gets th dosage needed to get him seizure free and this eases your worries

Joe

Re: Carbetrol

Submitted by puglover on Sat, 2013-11-02 - 11:13
Thanks, Joe. I've been keeping a handwritten diary, but will use the one on this site. He had two weeks of significant improvement on the new addition of carbetrol, but yesterday had 7 partials without the usual triggers of forgetting meds or sleep deprivation. He did loose his job earlier in the week, which of course is a stressor. Can just anxious thoughts bring these on? The answer probably is yes! I'm happy you are experiencing improvement.

Re: Carbetrol

Submitted by just_joe on Sat, 2013-11-02 - 14:43

Pug you just hit one of the triggers most people with epilepsy have. Anxious thoughts but mainly heavy srtess can trigger seizures in many people.  I am well aware of partial seizures considering those are the majority of th seizures I have. BUt mine also are complex partial and if I feel them in my hand they could go into focal motor seizures. When those hit my hand I can not do anything with my hand for a few seconds now. Those would be the seizures that went into convulsions. Which I haven't had since 1973. If you think you are anxious welllllllll I bet he is too. I can remember some of times I would get really mad and was always saying "why me". I did get an answer once "Why not you" We are to help others and doctors were given knowledge to help us. I may not be a doctor buy If I can help some people understand some of the issues epiletics have to deal with and get them to understand that just because they have seizures does not mean they can not follow their dreams. They may have to take a few turns or different route but they can get to their dreams. O dreamed of many things but I never got to the one I really wanted but I stil have a portion that will be hitting the web again. I was being trained as a roving chef but I had to stop because working in a kitchen can and did cause seizures. Getting too hot too fast triggers somem of mine. I still love to cook and watch people eating creations I came up with or recipes I changes to suite my taste. I have been asked for recipes and had a family cookbook on the web.That is the part I will be working on when I find a different website to deal with issues. So in my dream I can't be the chef in the kitchen but I can come up with recipes. It is just a different route to that dream. I gave up on my other dream because I didn't think walking around on a scaffold board 2 stories up was a good idea. I have always loved carpentry and have built many things. Yes I have driven many nails.

Help him dream and also have him use what used to be taught. Common sense does help. But dreams can always help people move from one area into another where their dreams come true of they change it to one that can achieve better.

Joe

Pug you just hit one of the triggers most people with epilepsy have. Anxious thoughts but mainly heavy srtess can trigger seizures in many people.  I am well aware of partial seizures considering those are the majority of th seizures I have. BUt mine also are complex partial and if I feel them in my hand they could go into focal motor seizures. When those hit my hand I can not do anything with my hand for a few seconds now. Those would be the seizures that went into convulsions. Which I haven't had since 1973. If you think you are anxious welllllllll I bet he is too. I can remember some of times I would get really mad and was always saying "why me". I did get an answer once "Why not you" We are to help others and doctors were given knowledge to help us. I may not be a doctor buy If I can help some people understand some of the issues epiletics have to deal with and get them to understand that just because they have seizures does not mean they can not follow their dreams. They may have to take a few turns or different route but they can get to their dreams. O dreamed of many things but I never got to the one I really wanted but I stil have a portion that will be hitting the web again. I was being trained as a roving chef but I had to stop because working in a kitchen can and did cause seizures. Getting too hot too fast triggers somem of mine. I still love to cook and watch people eating creations I came up with or recipes I changes to suite my taste. I have been asked for recipes and had a family cookbook on the web.That is the part I will be working on when I find a different website to deal with issues. So in my dream I can't be the chef in the kitchen but I can come up with recipes. It is just a different route to that dream. I gave up on my other dream because I didn't think walking around on a scaffold board 2 stories up was a good idea. I have always loved carpentry and have built many things. Yes I have driven many nails.

Help him dream and also have him use what used to be taught. Common sense does help. But dreams can always help people move from one area into another where their dreams come true of they change it to one that can achieve better.

Joe

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