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My husband was diagnosed with epilepsy in 2014 at the age of (Phone number can only be seen by MyEpilepsyTeam users), he was seizure-free. 2023-2024 he had 4 seizures. From January of this year, his seizures have been more frequent. He is using Valtoco nasal spray, but sometimes it doesn't work. He is on Keppra XR 2500MG, Vimpat 200MG. Does anyone have an issue with Valtoco not stopping seizures? Thank you
@A MyEpilepsyTeam Member I was on Depakote for probably 1.5 years, and it caused my ammonia levels to triple, which was not good for my liver. I asked about side effects, and the doctor said dementia. Then asked me - Have you been acting any more demented than normal? I mean, who would have been able to tell?!? I have been over the top all my life. I was started back on phenobarbital at the wrong dose and was a zombie with a husband who had NO sympathy. Switched to a new doctor and no problems since. Husband has become much more understanding after seeing the seizures up close and personal.
@A MyEpilepsyTeam Member , I’m 46 & have been on Depakote/Divalproex probably for close to 25 years or so, cause my Pediatric Neurologist started me on it. Then around 2015 when I began seeing one adult Neurologist he asked if I knew that long term use of Depakote could possibly cause Osteoporosis & I said no & so he did a bone density test & that showed I have Osteopenia in my left hip & he recommended Vitamin D & continued me on my Depakote & my current Neurologist still has me on Depakote & taking Vitamin D. Back in 2018 I started getting a few twitches & that night different symptoms like trouble breathing or something, I don’t remember but we went to the hospital & they claimed that I was just dehydrated but as the months progressed I got really bad shaking in both my arms & would holler “Make it stop! Make it stop! Make it stop!”. Sometimes my right leg would shake & my vision bothered me sometimes. I didn’t have any insurance at the time & was working at a fast food restaurant. Finally went to our Family clinic & the doctor saw that I hadn’t had bloodwork in almost a year, but I didn’t have any insurance, & so he did bloodwork & found that my Depakote level was at 135 & normal is between 50 to 100 & so he adjusted my dosage & months later the shaking finally stopped. I had been on the same dosage for years without any problems until then. My current Neurologist switched me from my Trileptal to Vimpat in November 2019 after doing a 5 day in hospital EEG & several months ago I asked out of curiosity why she took me off my Trileptal if I hadn’t had but one problem with it when I started crying for no reason at all & got dizzy & she said that long term use of Trileptal could harm the liver. I don’t always eat as much as I should, like if we don’t go anywhere, then I might just eat a peanut butter sandwich for lunch & dinner or if we go somewhere for either lunch or dinner then I might have a peanut butter sandwich for the other meal. So my stomach bothers me off & on & my Mom & stepdad & our friend notice it. I’m trying to take some over the counter probiotics to see if that helps. You said you had trouble going to the bathroom. Probably close to 15 years ago or so, I had surgery for an overactive bladder cause medication wasn’t helping. But I guess now maybe since I don’t eat like a normal person does, maybe my digestive system has trouble sometimes, I don’t know. But I definitely don’t have any problems with my bladder. The last visit with my Neurologist when we did bloodwork, she said things looked good, that my Vitamin D looked a little high & I told her I take a multivitamin & a Vitamin D pill & so we decided to lay off the Vitamin D pill as often, like maybe every other day or something. Thank you for sharing your experience. Your friend in Texas, Becky
@A MyEpilepsyTeam Member, be careful taking Depakote over time. Depakote will cause damage to your liver within months of use. I was taking it for 2 years when i was younger and was having issues going to the bathroom. After a blood test my doctor ordered, my liver wasn't looking normal. My doctor spoke to my neurologist and found out i was taking Depakote and asked the neurologist to take me off of it. Here is a link on the drug if you are interested. https://www.drugs.com/depakote.html
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