Community Forum Archive

Temperol lobe paranoia, is it a thing and can medication help / hurt?

Thu, 04/09/2020 - 08:57
(warning very long) My wife was officially diagnosed with temporal lobe epilepsy last fall. Although she showed signs of seizure activity going back a long time, albeit it got worse last year in general. Since the fall I have noticed an abnormal increase in paranoia. The problem is that some of it seemed justified in relation to work so I didn't really pay much attention to it. But lately things have gotten to the point of disturbing even though I have been trying to stay empathetic. It seems to consuming her to the point of it being the majority of our conversations. It also has spread to various things in our life and she is so confident in her ideas that if I say anything I am gas lighting her. The entire situation has been troubling, and I keep trying to stay empathetic and interject different points of view to calm things but it's just making it worse. Anyways so as I said she was noticeably getting worse seizure wise last year and as she did the paranoia increased. She finally saw a nuero and ended up on Topomax. It seemed to really help and although she was still concerned over different aspects of work she was much more clear minded once the side effects got better. (sorry this is long) So fast forward to the past few weeks. She has shown some signs of seizure activity again, it's nowhere near how it use to be but some of the zoning out aspects have returned as well as her getting "zap" type things, mostly overnight. However as mentioned it seems the paranoia has increased substantially. And it's getting hard to deal with on my end due to her getting offended and feel that I am trying to make her out to be crazy. So she met via video with her nuero a few days ago and said she has started to feel "off" again. She left out anything else as she honestly doesn't notice. He decided that she should be slowly titrated up to a higher dosage. So my questions are; does frontal lobe epilepsy cause paranoia? Once well controlled can it get better? And does Topomax cause paranoia itself, and if so can that get better as well? I am really worried as I don't know how to deal with this, I am trying to talk to her with compassion and stay away from being too abrasive. But I feel like "supporting" all of her ideas could make things worse. Thank you so much for the insight.

Comments

Hi,Thank you for posting and

Submitted by Anonymous on Thu, 2020-04-09 - 09:59
Hi,Thank you for posting and we understand your concerns. Seizures can take on many different forms and affect different people in different ways. To learn more about temporal lobe epilepsy, visit: https://www.epilepsy.com/learn/types-epilepsy-syndromes/temporal-lobe-epilepsy-aka-tle. We cannot determine if the paranoia you describe her experiencing is related to her epilepsy, her medication or if this is a separate issue, so it’s important that she’s continuing to follow-up with her healthcare team to explore this further. We are glad to hear that your wife was able to speak with her neurologist via a telemedicine appointment. You may want to ask your wife if you can join her during her appointments with her neurologist, to help ask questions, provide information about any seizures or mood or behaviors  you have witnessed and help her advocate for herself.Or you may want to reach out to her doctors to express your concerns and anything you feel she may have left out during her last appointment. It may be helpful to keep a journal or a diary to help keep track of side effects and document how she’s feeling. My Seizure Diary can be used to track seizures,organize health issues, manage medications, other therapies or personal experiences and more, which can be shared with members of her healthcare team. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . It’s common for those who are in caregiver role to feel overwhelmed. It’s important that you're making your health and overall well-being a priority as well. https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdfAdditionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, contactus@efa.org. epilepsy.com/helpline  , or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates 

Hi. I’m a licensed clinical

Submitted by Patriotrehab on Fri, 2020-04-17 - 02:26
Hi. I’m a licensed clinical social worker as well as a person with epilepsy. As ConnectHelp said, seizures can take on many different forms and a person’s response to epilepsy also varies either because of the psychological effects or the neurological aspects. Without examining her as I would a client, I couldn’t say if her paranoia is more likely related to psychological reasons or medical reasons. I can tell you that I was very suspicious of people and lacked trust when I first started having seizures nearly twenty years ago. Mine originate bilaterally from my temporal and parietal lobes. But, at first I didn’t know what was happening to me when I remained aware and nobody else knew that I was experiencing something and in the alternative other people said something happened to me and I didn’t realize that something did. Then, the doctors put me through an EEG and told me that I had a seizure disorder, gave me medication and I started having different kinds of seizures (milder seizures because I maintained awareness), so then I was paranoid because I thought the doctor made my brain do funny things with the thing (EEG) he put on my head and then the pills he gave me. My experience was hard though because I was being abused at the time and I was in the military, so I didn’t know who to trust. It wasn’t until I was able to separate myself from it all including going off the medication that I figured out what was real and what wasn’t. Your wife may need some support from others who have epilepsy. Sometimes just learning about epilepsy and sharing experiences can help. I also take Topamax and while everyone’s experience is different, I know that it’s been the most effective for me even though my doctor is adding on another medication now. Best wishes to you and your wife. 

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