Side effects with combined meds: Xcopri, Lamictal, Epidiolex, Clon.

Posted by adavis27 @adavis27, Jun 23 12:18pm

Hello, I would like to ask a question about a medication, Xcopri, and how taking it may be affecting my body physically. I've had Epilepsy since 2006, and I don't want to try to count the medications I've taken that have not made me seizure free. Since I started taking Xcopri and it has increased, I have been feeling slightly dizzy, having loss of balance, and feeling stiff, mostly in the late afternoon into the evening. I don't take Xcopri until bedtime, but I also take Lamictal and Epidiolex twice during the day and Clonazepam at bedtime with Xcopri. I found information about how it may reduce the strength of Lamictal, but I need to know what to do to stop struggling so much, especially since my doctor has planned to increase it and stop taking Clonazepam. What could possibly be causing me to have so much stiffness and drowsiness?

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kb2014a | @kb2014a | Jun 23 4:43pm

This is quite a few anti epileptics. They all can have side effects like you speak of. I onky take now lamitrigine ER 100mg daily. I have been seizure free over 14 years..I really don't have the side effects you mention. I do iffen need a nap daily. I am 65 quite busy have 3 dogs.

kb2014a | @kb2014a | Jun 23 4:44pm

Can you discuss these side effects with your neirologist?

Chris Gautier, Volunteer Mentor | @santosha | 6 days ago

Hi @adavis27
Welcome to Epilepsy & Seizures on Connect!
I'm sorry you're going through this. What you're describing resonates with my own experience when Epidiolex was added to my regimen. At that time, I was on Vimpat (lacosamide), and as my Epidiolex dose was introduced little by little, my Vimpat was gradually tapered along the way. Every time my Epidiolex dose went up a bit, my Vimpat side effects got noticeably stronger — and every time my Vimpat dose was reduced, they'd ease again. My doctor at the time explained that Epidiolex can effectively amplify the strength of other AEDs in your system — and that might be what's happening to you right now. During that transition, I'd also get blood tests periodically to monitor my Vimpat levels, which really helped guide those adjustments.
Epidiolex has been the best medication in my treatment journey since it was introduced in 2021, two years after I started treatment in 2019. For me, as someone very sensitive to AEDs, it has far fewer side effects than traditional AEDs. The tapering process was hard, but worthwhile!
I'm tagging @keeg1010, whose son is also on Epidiolex, to share her experience when it was first introduced into his regimen.
How long ago was Epidiolex introduced into your regimen? And has your doctor already measured your other AEDs' blood levels since it was added? Have you been able to report these symptoms to your doctor? That conversation feels important right now.
Stay strong!
Chris

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adavis27 | @adavis27 | 6 days ago

I've been on Epidiolex and Lamictal for years, and Xcopri has just been added this year. I am going in for blood tests this Friday. Along with these side effects, I have another illness, Stiff Persons Syndrome, and I have had a Baclofen pump to treat it since 2009. Even though the catheter from the pump was accidentally detached more than a year ago, I was still able to exercise, dance, and walk until early in May. That was around the time I started Xcopri. The neurologist is saying that the stiffness and dizziness are from Stiff Persons Syndrome. I don't know what to say, think, or do. Xcopri is supposed to be increase, Clonazepam stopped, and my other medications more than likely will not be changed until the blood tests provide some valuable information.

adavis27 | @adavis27 | 6 days ago

In reply to @kb2014a "Can you discuss these side effects with your neirologist?" + (show)

@kb2014a I have mentioned these side effects to the neurologist. One thing I didn't mention to you is that I have Stiff Person's Syndrome, and I have had a Baclofen pump to treat it since 2009. Even though the catheter from the pump was accidentally detached more than a year ago, I was still able to exercise, dance, and walk until early in May. That was around the time I started Xcopri. The neurologist is saying that the stiffness and dizziness are from Stiff Persons Syndrome.

kb2014a | @kb2014a | 6 days ago

In reply to @adavis27 "@kb2014a I have mentioned these side effects to the neurologist. One thing I didn't mention to..." + (show)

@adavis27 so you have no treatment right now for your stiff person syndrome?

kb2014a | @kb2014a | 6 days ago

In reply to @kb2014a "@adavis27 so you have no treatment right now for your stiff person syndrome?" + (show)

@kb2014a if your neurologist said it was from stiff person syndrome and your pump is not delivering treatment why was there no more follow up to address this issue?

kb2014a | @kb2014a | 6 days ago

Also xcopri is a schedule 5 controlled substance and can cause fatigue dizziness etc per drugs.com. If you are having seizure activity brain damage can occur so possibly you could have as a result more neurological symptoms. I don't think you should struggle so much either. Being advocates for ourselves with our health care providers is very important so we have the best quality of life.

adavis27 | @adavis27 | 6 days ago

In reply to @kb2014a "@kb2014a if your neurologist said it was from stiff person syndrome and your pump is not..." + (show)

@kb2014a I have been taking physical therapy for my stiffness at the facility where my primary care physician, doctor to help my SPS, and all my other doctors are located.