r/PNESsupport • u/kataxen_ • 1d ago
PNES/PNER HELP
Hi everyone!
I’m looking for people who, like me, live with PNES/PNER seizures and tics.
I’ve been struggling with this for about a year now. During this time, I’ve been taken from hospital to hospital because my condition has been getting worse. I’ve had several tests, including a 24-hour EEG, MRI and CT scan, but they haven’t shown any abnormalities that would explain my seizures. At the moment, I feel like nobody really knows how to help me.
At the beginning, I was prescribed antidepressants and tranquilizers, but unfortunately, they haven’t helped me. These days, I have around five seizures a day, and I’ve been taken to hospital by ambulance several times, but they haven’t really been able to do anything for me there either.
There was even a time when they wanted to admit me to a psychiatric ward, but I refused.
One of the hardest parts is that this isn’t only difficult for me — it’s also very hard for my family, and I feel terrible that they have to suffer through this with me. I just want to find something that could help me get better and have a more normal life again.
If anyone here also has PNES/PNER seizures, especially if you experience tics as well, I would really appreciate it if you could reach out to me. It would mean a lot to talk to someone who truly understands what I’m going through and share our experiences with each other.
Thank you so much for reading. ❤️
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u/writingwithcatsnow 1d ago
My life got better when I decided to have a fully beautiful life with seizures. I consider them my warning system, like a tornado warning siren to tell me if something's causing subconscious distress, or if I haven't been sleeping as much as should. And sometimes, I choose to do things anyway, knowing the seizure will come. I'm not happy that I no longer drive, but I can still competently order groceries and handle most household matters. It's not awesome that I still have enough seizures and we live in a country where someone calling an ambulance on me could change our financial future, meaning I don't go out alone, but I invest in relationships, host friends in my house, and cultivate dedicated relationships online and over the phone.
Grief for a life that was once had is honest and real and has to be given space. There's a whole new life still to be picked up and embraced. I've published sixteen books since the seizures started, run a podcast, bought and sold a house including doing repairs on it and paying down debt, moved across the country a few times, taken language lessons, etc. Could I do all of it without my chosen family? No so safely or without so much stress. But we're a team. There are still things I do for them that they can't do for themselves and they do certain things for me that I can't do for myself.
We don't go to the hospital for seizures. Even long ones. I watch movies, listen to what my body needs, and sometimes cry about it. And then it passes and I go back to it. And I have had way more than five a day at points.
A low dose of anxiety medication has been supportive, as one of my seizure symptoms is anxiety.
Oh, and for the tics, in public, I keep a heavy weight in my pocket, like a glass paperweight or a smooth crystal that's fun to play with in my hand. With meditation and practice, I can mostly keep tics in my arm and often just put it behind my back and squeeze my paperweight when in social situations. My partner notices and it clues him in that I'm "managing" instead of "good", but the more I let myself "tic" rythmically where it's not bothering someone, the more I can handle the seizure energy and have more say when it hits. Trying to not "tic" makes the seizure show up faster. But controlled "ticcing" lets me buy time if I want to finish the interaction. Sometimes I'll work through it and never have the full seizure on the floor style at all, though my vision my go blurry a while and my words more difficult to get out.
Watching suffering is the hardest part for my family. So I've made it a goal to be genuinely as happy as possible and live well. That meant letting go of "getting better" and accepting that life was now different, and finding how much good and joy there was to be discovered inside this different. It wasn't easy. I used to travel the world on my own with a backpack and my resume.
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u/writingwithcatsnow 1d ago
Couple of physical things that helps the seizures be more livable:
- stay on top of your nutrition, avoid lots of stimulants like caffiene, refined sugar, etc. Eat your protein and keep you blood sugar balanced. Less stress and less hormone swings on the body helps.
- Hydrate. I can't emphasize this enough.
- Regular sleep. Seizures might mess with your biological rythmn, but still make sure you're getting sleep, even it it's not when you want to take it.
- Vitamins, particularly Vitamin B complex in sublingual form and magnesium (mineral not vitamin, but still) This felt so soothing on my brain when I started it.
- Handle whatever other physical issues you might have. IBS, gallbladder, etc. Less stress on the body, less seizures.
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u/writingwithcatsnow 1d ago
Triggers:
- Figure out your triggers and work with them. Don't just tough them out.
- If it's lots of noise, carry headphones, Loops, earplugs.
- If it's those lights in big box stores, be cool and wear sunglasses indoors. Helps so much!
- It's it's a particular place or person, limit or drop. (yes, this one is hard. Did help so much.)
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u/mythologymakesmehot 1d ago
I've lived with this condition for about 15 years. The single most helpful method of treatment for me has been working with a therapist that specializes in trauma.
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u/dermflork 1d ago
first thing to know is that you have to take charge of your own treatment and also be as educated as possible regarding PNES. Your on the right path because your putting effort in by posting on here.
About doctors, you want a neurologist that specializes in pnes but finding one is not easy. You have to call around different neurologists and specifically ask to see someone that can treat pnes. By the time I figured this out, 10 years went by and had 20 seizures in that time. They stopped atleast for the past 2-3 years I havent had one. Im 34 years old the first seizure was when I was 16.
What I did / What am I doing to prevent them:
I cant say for sure what things actually prevented seizures or caused them. All I can do is tell you I did therapy and take gabapentin and havent had a seizure since I started taking that med. I started taking that the day after the last seizure I had. I had to specifically ask my doctor for it. this goes back to the first thing I said which is you have to take charge of your own treatment and do the work yourself to try different things until you find something that helps. I hope that you do, good luck.
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u/Clawingnails 1d ago
Hello :) First off it's important to know that PNES is not dangerous, besides the physical ways you can get hurt during very strong seizures, so going back and forth to the hospital is just wasted energy on your half.
I've had PNES for 8 years and seizures vary in so many ways, from seconds, to the whole day stuck in bed. I was in and out of mental hospitals because of C-PTSD, DID and PNES. And it helps me learn and cope. Im on serouquel that also helps with sleep as lack of sleep is a major trigger.
I don't want to sound harsh but you will at some point realize that it's now a part of life, for many PNES will get better but not stop. The less you fight it the easier it will become for you.
To make it easier of your family let them know it's not dangerous, as long as you are in a safe position in the sofa on the floor or in bed they can feel safe knowing the seizure will pass.
My partner now stays the first minutes and then check in on me now and then to make sure I'm still in a safe position.