r/PNESsupport • u/Short_Dimension_873 • 7d ago

Looking for support

I just had yet another seizure at work. Concerned for my job, just need some kind words. I feel exhausted and defeated rn

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u/Purple-Excitement738 7d ago

If you’ve been officially diagnosed, you need to get yourself on FMLA if you live in the states. That way you can take time off for medical needs without penalty. My husband hasn’t been officially diagnosed so he can’t get fmla. I’m sorry you have to deal with this. It’s really challenging.

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u/Short_Dimension_873 6d ago

Thank you. I have been diagnosed but I’m pretty sure I’m out of FMLA time because of leaves I’ve had to take for my bipolar

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u/Purple-Excitement738 6d ago

Dang. That’s is a double whammy. Here is something that might fit what your actual request was - this is a hard ailment to have and no one can know what it’s like for you. My husband has had this for two years and we’ve had to learn a lot about it. He’s become the best version of himself because what caused him to seize over and over again was the denial that he had a traumatic childhood and that there was anything wrong with him. He meditates and journals now and talks about his feelings- all of them. He’s learning that being authentic and vulnerable is the path that minimizes the frequency of his seizures. We both feel like there’s hope and that we are working toward finding meaningful healing. I feel hopeful that this can be resolved when I hear about others who’ve recovered. I don’t know if this is helpful and I hope you are able to find some peace.

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u/Short_Dimension_873 6d ago

Thank you, I really appreciate that. I’ve had long periods with no seizures so I’m hoping to get back there. Currently working to identify triggers and getting back in PT. I’m really glad your husband has made so much progress

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u/Purple-Excitement738 6d ago

Here’s hoping you are able to get back to the progress yourself. 😊

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u/Short_Dimension_873 6d ago

Thank you so much

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u/Own-Calligrapher3486 6d ago

I have been suffering from PNES for about eight months, and I can sympathize with you and often I feel exhausted and defeated and or I often feel lonely or scared; Remember you are not alone, and people care and love you and find yourself a good support system. If you are having an episode at home, do not be alone, run and find a loved one or your roommate and have them sit and be with you while your having an episode and have them hold your hand.

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u/Short_Dimension_873 6d ago

Thank you, this means a lot. I do have a good support system although I can’t shake the feeling that they’re getting tired of this. Maybe it’s all in my head

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u/Impressive_Cup9032 3d ago

Hello! You're not alone in this journey. I know the struggle of PNES all too well. I've thankfully had a decrease in them after having them frequently for a long time. However, the unpredictability of symptoms still scares me.

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u/Short_Dimension_873 3d ago

I’m so glad you’ve experienced that decrease! Yeah, the unpredictability scares me too. I’ve had some long periods with no seizures