Focal seizures
I'm really struggling
10 years ago I had a bout of seizures after a few years of stress. I was diagnosed with temporal lobe epilepsy
They went away, with no sign of anything, and then 7 months ago, 10 years later, I had a couple of tonic clinic seizures. I've been on lamotrigine and it has helped - no more tonic clonic seizures - but I'm still having focal seizures. They're manageable but they knock my confidence and I get really depressed and sad after.
I feel like I'm a burden but also like I can't tell my family (some of my focal seizures happen after drinking and bad sleep and i know they'll judge me for that) so I don't get that support. My husband is incredible but we have a toddler and I don't want to be a burden to him on top of everything else.
Does anybody else have this? The seizures make me anxious, depressed and sad, even though they're just focal. Would love to hear from people who feel the same!
x
I'm so sorry to hear what you're going through. I also have temporal lobe epilepsy and went through a three year gap of seizure freedom before seizures came back much worse following a marathon. But one epileptologist suspects I might have been having non-clinical seizures all along, because when I had intracranial electrodes inserted to map my brain for surgery, the EEG caught seizures while I was just talking to the nurses and walking down the hall like usual. I also take lamotrigine as well as Vimpat. Has your doctor mentioned trying a second AED?
Also, do you have an Epilepsy Foundation chapter in your state? Many foundations have virtual connect groups, like the Epilepsy Foundation of Minnesota (EFMN), where I live. It's so great to chat with other adults and share stories and advice. EFMN also has a connect group for Parents with Epilepsy, and one for Parents/Caregivers of people with epilepsy. If your state doesn't have an Epilepsy Foundation chapter, you can join our chats! https://www.epilepsyfoundationmn.org/connect-with-others/connect-groups/
I hope things improve for you!!
Best,
Stacia (Epilepsy Moderator)I would like to connect with you. I just recently got diagnosed at 46. Had a major seizure at work feb 2023. Got diagnosed 5/8 with epilepsy after thinking alcohol may have been a reason for it. Support group recommended?
having a support system can really make a big difference. I’m glad you found our community, and I hope you will find it to be a welcoming and supportive space💙. I also thought you may find this article that offers suggestions for finding support groups in your area helpful https://epilepsydisease.com/living/support-groups. Please reach out to us anytime, we’re here for you! All my best, Julie (team member)
Hello Fiona, I have the same seizures as you. I've been living with the tonin-clonic seizures for a little over 40 years now and the focal seizures for about 10 years. I truly understand and know what you're going through. Epilepsy can be quite hard at times, but you are here for a reason. I'm a mother as well and I've had to realize that I must be strong for them. A few years ago, I started to learn about yoga and meditation. Meditation has helped me so much with my epilepsy and definitely with my duties as a mother. Honestly, I've learned about this doing an online search. Meditation helps me a lot with my anxiety and depression. Also joining support groups are great as well. Take a look at this article related to mental health. Read here: https://epilepsydisease.com/mental-health Remember, we're in this together!
Warmly, Natalie Y. B. (Epilepsy Moderator)
