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A MyEpilepsyTeam Member asked a question 💭
Orlando, FL

Im starting Epidiolex tomorrow and i’m wondering what side effects some of you have experienced or how well the medicine worked for you

December 17, 2024
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A MyEpilepsyTeam Member

EmilyAnne,
I have been taking mine without food. The directions say to always take with or without food. I had problems with very loose bowels. If you eat cheese or eggs, that helps. Speak to your Doctor, and read all the directions that come with it.

December 17, 2024
A MyEpilepsyTeam Member

I started Epidiolex June 1st. I'm currently on 3 mg/day (1.5 mg twice a day). All my other meds are twice/day, and in order to try and discern any immediate side effects, I take the Epidiolex on a different schedule, about 4 hours after the Lamictal and Klonopin. So far, I haven't felt any side effects at all. After my morning dose of Lamictal and Klonopin, after about an hour, they kick in and I need to nap at least an hour and then wake up in a haze for another hour. I don't feel this crush of fatigue and drunkenness after the Epidiolex. I believe the plan is to get me exclusively on the Epidiolex, that right now we're looking at how I'm going to tolerate it. I'm having zero issues so far on the low dose, but it's possible that any side effects I might have from it may be hidden beneath the heavier side effects of the Lamictal and Klonopin, or that such a low dose is currently just easier on my system. We'll see, but it's such a slow process. All of us know the impatience one would have at the prospect of finding an effective med that doesn't saddle you with the side effects of our current available options of AEDs. I'd be willing to lop off both legs at the knees to get away from these side effects, though the Lamictal and Klonopin have been effective and gentler on me than any of the other meds I was started on initially.

December 18, 2024
A MyEpilepsyTeam Member

I take Epidiolex. It can cause the runs. Just be aware. Epidiolex has been very effective for me. I am drug resistant so it makes my seizures less intense which I am grateful. Good luck and if you have any other questions please ask.

December 17, 2024
A MyEpilepsyTeam Member

I was on a very large dosage of the Epidiolex at first. I could not tolerate 4 or 5 ML all at once, so now take 2.5 ML 9 AM and 9 PM. If I watch my triggers and take meds, I am controlled.

December 25, 2024
MyEpilepsyTeam

It's great that you'll be starting Epidiolex soon. As with any new medication, side effects can vary from person to person. Some potential side effects to be aware of include tiredness, decreased appetite, diarrhea and signs of possible liver damage. However, Epidiolex was found in clinical trials to have a relatively good Show Full Answer

It's great that you'll be starting Epidiolex soon. As with any new medication, side effects can vary from person to person. Some potential side effects to be aware of include tiredness, decreased appetite, diarrhea and signs of possible liver damage. However, Epidiolex was found in clinical trials to have a relatively good side effect profile compared to other epilepsy medications. In the clinical trials, many parents actually preferred the lower 10mg dose of Epidiolex for their children as it provided most of the seizure control benefits with fewer side effects than the higher 20mg dose. It may take some time to find the right dosage that works for you. Let your doctor know if you experience any side effects so they can adjust the dosage if needed.

December 17, 2024

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