Community Forum Archive

Husband has PNES, hoe can I still get to work?

Tue, 10/01/2019 - 11:14
My husband has had non epileptic seizures since we got married Feb 2018. They’re stress and sleep related, and in a good week he has two, bad weeks they’re daily or more. Most recent development is that saliva makes his breathing difficult. Our relationship is mostly holding up. I feel trapped and helpless though, because I feel the need to be there through a seizure in case he has trouble breathing and suffocates. Not only that, but my leaving to go to work adds to his stress and makes the seizures worse. I’ve been lucky that my jobs are basically understanding, but I’m at my wits end. He misses work due to seizures, and so do I- how are we supposed to live? Is there a nurse branch that will sit with someone having a seizure, to make sure they’re okay and allow the spouse to get to work with relatively little panic? Please say yes.

Comments

Hi Hazelesque,Thanks so much

Submitted by Anonymous on Tue, 2019-10-01 - 14:58
Hi Hazelesque,Thanks so much for sharing your experience, it sounds like you all have been through a lot. It’s important that you continue to express your concerns to your husband's healthcare team and discuss any potential changes in seizure types, frequency, side effects, behaviors and symptoms.  It is common for those who are in caretaker role to feel overwhelmed. It’s important to remember that you are not alone, and it is just as important to make sure you’re taking care of yourself as well.  https://www.epilepsy.com/sites/core/files/atoms/files/Caregivers%20factsheet.pdf A key part of managing PNES is knowing how it can affect a person's independence and day-to-day needs. Visit our independent living pages here: https://www.epilepsy.com/living-epilepsy/independent-living  to learn more about things to consider for independent living , resources that are available & when help is needed. Use a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Track his episodes, record his medical history, medications, side effects, moods,triggers, or other personal experiences. Create a seizure response or action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around your husband to understand what to do if he has an episode. Learn about potential risks and safety tips: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe For more information regarding our patient assistance programs & national & community resources, please visit: https://www.epilepsy.com/living-epilepsy/247-helpline/national-community-resourcesYour local Epilepsy Foundation: epilepsy.com/localsupport can help you find resources, support groups, events, and programs in your community. Or contact our Epilepsy &Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support. epilepsy.com/helpline

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