Community Forum Archive

I'd like to know if the weed  has helped your seizures.I am a regular user but this does not control mine, It eases my mind, helps me deal with them and sleep also,I still need my regular meds to have any control of my seizures. I have had epilepsy for 45 years since 16 yrs old. I am thankful my meds at least stave off the worst but I still have daily partials Why do want to go off Keppra if it Helps with your seizures?? I have tried all kinds of drugs- if any completely controlled mine I'd be thrilled.Bear in mind that your brain needs help to function normally. You must consult your neurologist for the best way to go off Keppra just like any other drug. Please tell me if your regular use of marijuana has helped at all. Thanx   

Hello i would like to say that i have had JME since i was 10 years old. I have been on Depakote and it has done wonders for me. I realize that it is not medical marijuana but it has served it's purpose. I will be winged off to a different medication for when I would like to be a mother. Hope it helps.

Hi Kay. My names is Brent.I was diagnosed with JME in my early twenties.I have been taking 200mg of Lamotrigine twice a day for five years now, and have recently added Med.marijuana.It took a few months to get the Lamotrigine dose right, and the side affects are minimal.The worst I experience is a migraine, and thats only after missing a few doses.Now, this is where cannabis comes in. I started smoking not as a replacement, but as a supplement, and I really enjoy smoking. So, say for whatever reason I forget my meds. For those few days cannabis acts kinda like a buffer.Once again finding the correct dose can take some time.However finding the right strain is more important then dosing. If she were an adolescent then dosing would be more critical. Knowing that she has smoked before should take a lot of the anxiety away from the subject, so I would try asking her about how to get things started.I bet she can answer just about every to question you have, and then some.I only mentioned my medication because I recommend it over everything else I've tried, so if you haven't already go talk to your neurologist about it. 

Hello, we are going to try CBD oil and valerian for our son. Can you tell me how you are doing now that it has been over 90 days?

Hi Julie. My daughter, who is 17 now is starting to be weened off Depakote and onto Keppra.  Also diagnosed with JME at 2-3 years old. Curious as to what your side effects were and if you were seizure free on Keppra.  Depakote has been good to her but her dr is concerned with its long term effects.

I take Depakote and it works 100% of the time if I’m doing my part by eating and sleeping enough. I stopped taking it for 2 months this past summer July/August medium, then high levels of cbd to at least give it a shot. I had no grand mals but experienced the same amount of micro seizures that I have experience on days when I’ve forgotten to take my depakote in the past. That’s just my experience but the average neurologist doesn’t want to see you have seizures under their care, so definitely consult with them first, a doctor that prescribes medical marijuana is usually not nearly as experienced in treating epilepsy as a neurologist. Proceed with caution, your life is not worth all the hype surrounding cbd, unfortunately there have not been nearly enough studies done with it in terms of epilepsy, and people get too excited when they see the extremely effective yet by numbers, still rare cases where mmj does work. If it were truly that effective, more doctors would be prescribing it where it’s legal at least to improve their rates of success in their personal practice, which is the whole point of what they do. 

I'm actually really curious about this myself! I was diagnosed with JME when I was 14, and started taking a low dosage of Depakote, however the weight gain I suffered from it just kept causing me to have to take more and more medication to remain stable. I'm currently taking 750mg twice a day (So 1500mg total) of the generic version of Depakote ER (Divalproex ER) to deal with my JME. It's causing my weight to get out of control and frankly I'm sick of it. I feel terrible all the time, and even now 1500mg isn't enough to keep my epilepsy in check, I have tonic clonic seizures throughout the day, and really bad headaches. I want to start lowering my medication, and maybe someday even get off of Divalproex and onto CBD or medical cannabis (Once I work at a job that is okay with me using it.) But I have no information about the safest way to do this, and my neurologist is no help on the matter either, she doesn't know anything about CBD and won't recommend it to me. If anyone has any information that could help me work on this shift, I'm going to be keeping this page favorited so I can check replies. I hope someone can help me, honestly the mood swings, the weight gain, and the damage it does to my liver, I'm unsure of how much longer I can keep doing this.

Hi Kay! My 18 year old was just diagnosed with JME and I am really concerned about the meds, and feel strongly if she watches her triggers she can control it. But there are always those times that the sleep just gets cut short and being at university, she will drink from time to time. I'd like to try options, including CBD. Did you give it a try, and how have  you found it? Alternatively, if she did go on meds, what was the outcome? I feel like no one I have found (facebook support groups, etc) really considers options besides the ready meds the doctors jump to, so I am happy to see your post (despite being quite old)