Switching Meds after 24 years

doickle

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Good Morning,
I have had epilepsy since I was 16. I'm now 41.
I have been on Carbamazepine from the start and everything has been pretty well controlled.
The dosage has increased and decreased a few times to help manage auras that would occur.
I have recently been trying to sort out some other health issues (Sleep Apnea, High Cholesterol, High Blood Pressure) and have decided to discuss the idea of changing meds with my neurologist.
Her initial suggestions were a possible switch to Keppra or Topamax.
I don't know much about either of these two so would like some feedback from anyone with experience on either one.
I would also like to know if anyone has made a med change after a long time on a certain med when things were actually working.
One of the drivers to change is the fact that Carbamazepine is metabolized in the liver and with my liver trying to deal with high cholesterol and statin meds it may be best to switch to something that is processed differently.
Any feedback is helpful.

Thanks
 

Porkette

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Hi doickle,

Welcome to CWE! I took Depakene for many yrs. and then I had to change meds because my body became immune to the drug. I took tegretol for many yrs. also and it worked great for absence and complex partial seizure but then right out of the blue I broke out with a rash from the drug after taking it for many yrs.
I did try Topamax but that drug wasn't strong enough for me I ended up having 23 seizures in just one month and when I tried Keppra I was on it just one month because the drug gave me such a hot temper I had to get off the drug.
If you want to find the correct drug for your seizures ask your Dr. to do a DNA test on you. They will draw a few tubes of blood and then take a Q-tip and wipe the inside of your mouth, all of that is sent to the lab where they will be able to see the amount of enzymes in your liver along with your body chemistry and by seeing all of that they can match you up to the best seizure med with the least side effects or it will show if you are drug resistant. I found out I am drug resistant to all seizure meds out on the market now so my Dr. has me on cbd oil (medical marijuana) and I am amazed at how this has decreased my seizures to the lowest since I started having seizures 45 yrs. ago. You may also want to try putting coconut oil on your skin once a day the coconut oil builds up ketones in a persons body which help reduce and in some cases stop a persons seizures.
Here's wishing you only the best of luck and May God Bless You!

Sue
 

cadsgj

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I haven't been on carbamazepine for 24 years but for sure over 15. Since I have been on it i've often had to change my secondary med. For some reason, they do not want me off it. After reading what you say about this drug and liver, I think I am going to talk with my neurologist, just curious where I am at there.

Do hope new med will get you on a great step uphill!
 

jh2

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I also have been on slow release tegretol for over 15 years and have only now been affected by it. instead of taking me off it they have introduced keppra along with it to satbilise the tegretol.
keppra depends on your dosage and according to my neurologist amplifies your natural personality eg if your naturally anxious it could amplify it. im on 1000mg of keppra and 800mg of tegretol cr and find they work well.
I would heavily advise against topomax . I found along with someone else in the forum post is its not a strong enough drug (and its side effects can be nasty). I had to be taken off it.
hope this helps.
 

Music36

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I've been on Tegretol for 27 years and Keppra for 10 years. Another thing to be concerned about with Tegretol is that it can do bone damage (osteoporosis). My epileptologist had me start having bone density tests (X-ray) when I was about 40 years old. Keppra reduced my seizures better than any med I had ever tried. I take 3,000 mg of Keppra XR and 700 mg of Tegretol XR. I no longer have complex partials thanks to surgery in 2015, but I still have occasional auras so I'm going to stay on the meds. I have thought about getting off Tegretol and replacing it with another drug, but I'm afraid to mess with it.
 

Nakamova

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Hi doickle! You've gotten some good feedback/advice above. I would just add that for many there is a connection between sleep apnea and seizures, so you may find that controlling the former helps with the latter. Have you had a sleep study done? That may shed some light. The link below will take you to CWE threads about sleep apnea that you may be interested in:

http://www.coping-with-epilepsy.com/forums/tags/sleep apnea.html
 

doickle

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Thanks for all of the great replies. I know it is a few weeks since my original post but I'm just now getting around to checking in.
As an update, I started Keppra, titrating up to 2000mg/day and at the same time weaning off the tegretol. Yesterday was my first full day with no Tegretol since I was 17.
I am definitely noticing a reduction in nighttime partials but I am also experiencing what I believe is withdrawal from the tegretol, a weird, slight tingling an my limbs and a strange heady type feeling. Definitely not the same as when I would have an aura so I don't think it is that.
Any tips from anyone on possible withdrawal symptoms from tegretol.

Thanks
 
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Like you, I've been on Tegretol for over 20 years. As it usually appears, tegretol lower your WBC and that has never been a problem. The problem now is that my sodium level has dropped to extremely low levels. I passed out and fell at a parking lot once. I had to be hospitalized for it. Right now I am in the process of weaning off Tegretol and introducing Keppra. I've started to get seizures in the process but hope that in the long run it turns out to be a good altenative.
 

doickle

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Like you, I've been on Tegretol for over 20 years. As it usually appears, tegretol lower your WBC and that has never been a problem. The problem now is that my sodium level has dropped to extremely low levels. I passed out and fell at a parking lot once. I had to be hospitalized for it. Right now I am in the process of weaning off Tegretol and introducing Keppra. I've started to get seizures in the process but hope that in the long run it turns out to be a good altenative.
It has been a few weeks since I checked up on this thread and I have learned quite a bit in the meantime and hopefully it can help you.
In my last post things seemed to be going good with Keppra and being free of Tegretol. However, after a few days I began having partial seizures, one or two at first that I passed off as some break out seizures due to the switch in meds, but they started to become more frequent both at night and during the day. I got to a point where I was having about 4 per night and 2-3 during the day.
I immediately got in contact with my neurologist and started to get back on the Tegretol and wean off the Keppra. I also found the Keppra was causing very poor sleep, I was falling asleep by 10:30 in the morning after sleeping all night.
After my first dose of tegretol everything went back to normal. I have had only one partial seizure in the 3 weeks since getting back on Tegretol.
The really interesting thing I learned is about the different channels in the brain that that can cause different types of epilepsy. Tegretol works on the sodium channels and Keppra does not.
If you Google "epilepsy and sodium channels" you will get a lot of information that has been discovered in the past 5 years regarding the genetics related to this.
It is very interesting.
What I have figured out and what I am exploring further with some of the doctors who are working on this research is that my epilepsy must be caused by misfiring on the sodium channels so tegretol/carbamazepine is actually the perfect AED for me. Keppra did not work at all for me.
Please discuss this with your neurologist and see if it helps your situation.
I am actually glad that I tried to switch meds because it led to this discovery.
Hope this helps.
 

Porkette

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Hi doickle,

Thanks for the update, i'm sorry you had to have more seizures but just like you when I was put on keppra my seizures increased like crazy so once I went off of it and went back on Diamox Sequel which is a dieuretic the seizures decreased and are a lot less than when I was on keppra. I wish you only the best of luck and May God Bless You!

Sue
 

Jeanbean

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Doickle,
I was taken off Tegretol slowly in the hospital for a video eeg and had the same side effects. The epileptologist said it's normal to have those side effects and then they increased it again and it took a few weeks to feel back to normal. Good wishes to you!! Jeanne
 

seagull

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I could not take tegratol.
So unfair in uk I want come off my lamac try cbd oil everyone seems do well on it.Look at you like junki if ask for it in uk
 
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