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ahernandez
@ahernandez

Posts: 9
Joined: Jul 09, 2017

Auto-immune Epilepsy

Posted by @ahernandez, Dec 4, 2017

Good morning,
Has anyone been diagnosed with Auto-immune Epilepsy? If so have you gone through immunotherapy treatment? I am asking because I just had my last steroid infusion 2 weeks ago. I am still on an immunosuppressant (CellCept) and my anti seizure meds (Kept and Trileptal). I am seizure free since July and have been back to driving since end of Oct. The reason I’m reaching out is every day I am in constant fear that I will have another seizure. And I think between that and all the meds I have been having really bad anxiety. I dont know what to do. I’m trying to take it one day at a time but it is hard. Everyday things/decisions are becoming difficult. People want to plan things/trips and I’m afraid to. I just thought if there was someone out there who has been through something similar it would be great to get your perspective.
Thank you
Amanda

REPLY

Hi Amanda,
I’m tagging @techi and @stayfree to join you in this discussion about autoimmune epilepsy because they have mentioned having seizures related to autoimmune disease.

Amanda, great news to hear that you’ve been seizure free since July and driving again as a result of immunotherapy treatment. I can understand your apprehension in having confidence in this new seizure-free state and making plans for trips and things. According to this study (https://www.ncbi.nlm.nih.gov/pubmed/24706013) by doctors from Mayo Clinic , most people (85%) remained seizure-free for more than six months after initiating long-term oral immunosuppression. You can read more here https://www.epilepsy.com/article/2014/6/immune-therapy-autoimmune-epilepsy

Have you thought of using non-medicine approaches to dealing with the anxiety you are experiencing, like meditation, cognitive behavior therapy or yoga?

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