Any experience with the medication Trileptal?

Posted by sadeyes @sadeyes, Dec 7, 2019

Any experience with medication Trileptal? Good/bad? I am HIGHLY SENSITIVE to most side effects of almost all meds and am extremely anxious to start new med but don't know what else to do.

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@jenfossbru

Hello,
I can only speak through my son, but he takes it with no issues. Maybe a little weight gain. He is also very sensitive as well to medication & once a vaccination. He takes for seizures.
Jennifer

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Thank you. So far it is just making me really tired....I have been through worse, as far as side effects go. Hope your son is okay.

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@jakedduck1

@sadeyes
Hello,
Have you asked your doctor if pharmacogenomic testing would be beneficial in assessing your risk of potential side effects?
Jake

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I will have to look into this more. I have explored it a little. I know $$$$ is an issue. Thank you.

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I was given 600mg 3 times a day for bipolar after getting off of alcohol and adderall that I had used for years. I was experiencing mood fluctuations etc and the doctor called it bipolar and gave me the trileptal. Granted, I came to him for help and was thankful at the time.

Fast forward 5 years, I considered that maybe the side effects (tiredness, confusion, dizziness, abnormal thoughts) were not worth it. I also doubted that the doctor took into account I might have been in a normal period of weirdness after getting sober and not actually be bipolar. We tapered the medicine to 150mg 3 times a day. Much of life drastically improved for me. Interest in activities, energy, feeling normal in conversation with new relationships, etc. Note that I did go to therapy twice for 6 months at a time, and I also participate very regularly in a 12 step program and have a solid support group after years of it.

Fast forward 5 more years and I've stepped down to 75mg twice a day. Similar great improvements in life.

Long story short - My wife, therapist, and I believe I was misdiagnosed. Still, the medicine may have served a purpose for me for at that time. It is hard to say. Our 10 year conclusion is that I have ADHD and do no need the medicine. I have a family and a full time stable job etc, good relationships with friends, wake up in a good mood most days, all signs that continue to point in that direction.

Cheers! Not knocking this medicine for bipolar or anything else, just presenting my long-term experience.

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Hi @blakebb
Thank you for sharing your story with us.
Before being diagnosed with epilepsy in 2019, I also have been misdiagnosed. The doctor at that time gave me some medications that triggered a seizure I have never experienced before. Though I am not a doctor, I felt something was not right with me and with the treatment, deciding to look for a second opinion, who gave me the right diagnosis of epilepsy.
Thus, in such circumstances, I do believe it is wise to check for a second opinion.
All the best!
Santosha

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@jakedduck1

@sadeyes
Hello,
Have you asked your doctor if pharmacogenomic testing would be beneficial in assessing your risk of potential side effects?
Jake

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Jake
How do you find out where this testing is?

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@heal33
I'm not sure if it was my Neurologist or a doctor at the University of San Francisco.
A pharmacist may information about testing.
Jake

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@jakedduck1

@heal33
I'm not sure if it was my Neurologist or a doctor at the University of San Francisco.
A pharmacist may information about testing.
Jake

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Jake,
Thanks for the reply. I'm still trying to figure out a replacement for lamotrigine. I've been on it many years and my seizures haven't been under control.
The physician's assistant wanted to try Keppra but I told her I tried that before and it caused GERD. I was still on lamotrigine (650 milligrams, I am now on 250 mg, why take more when the results are the same?) I'd like to eliminate lamotrigine first and then try Keppra but don't know if doctors want you to do that.

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