I had two seizures yesterday. One lasted 20 minutes and the other almost an hour and a half. My breathing during my seizures is messed up. Im trying to catch my breathe and it feels like I’m suffocating. My partner has to rub my back and neck. That seems to help. At some point during it, I stop breathing and it’s hard to force myself to breathe. Does anyone experience this???
Recently in the last month and a half, my new neurologist mentioned that I have FND (which is the overall term and PNES falls under that.) I’ve had 13 seizures/episodes. I finally said out loud “I’m ready to heal.” It’s been better but I still have my days of random thoughts, random noises, random words trigger my anxiety and then I start to get a stomach knots. Old memories get triggered. That’s what starts my seizures/episodes for me. It’s a long process but I know with a positive mindset I can work thru it.
My partner thru all of this has been a huge help and I appreciate everything he does for me.
I started to have these weird eye rolling upwards and getting stuck episodes starting in April. I went to my primary care in May and he referred me to a neurologist. In the meantime I had an MRI done in May and it came back clear.
I wanted to get my eyes checked so in May I went to an ophthalmologist and got my eyes checked. They said my eyes are good and nothing is wrong.
I had to wait two months to see a neurologist which was July. I went in and did my initial exam. I did an EEG after the first appointment to rule out seizures and epilepsy and that came back clear. At the time I had multiple episodes.
I met with my psychiatrist in the middle of seeing my neurologist and we changed my medication to completely stopping one medication and starting another. One the medications I was on, the side effect is involuntary movement in the body. We thought that was causing my episodes. It was not.
A month and a half later I did a 3 day EEG in August, where I had to have wires taped to my head and carried a small backpack with the equipment. Everytime I had eye pressure or a migraine or any episode related symptoms, I would push a button so they know to look at that time and date to pin point what was going on. I had an episode a few days before AND after the 3 day EEG. No episodes during the EEG.
When I met with my neurologist in September for my test results on the 3 day EEG which came back clear, my neurologist and the other doctor over the clinic came to the conclusion that I have episodes due to stress and anxiety. I also have a lot of Déjà vu which was a factor to why came to that conclusion.
My neurologist wanted me to check my Lamotrigine levels since I take it. It came back good so I increased my medication from 200 mg to 400 mg. That made me irritable so we switched back to 200mg.
It took 6 months to get to that conclusion. So far I’ve had over 50+ episodes. I was having them every week during that time so I didn’t think anything of it.
I was getting episodes almost every day in December. I finally decided to go to the hospital on January 3rd. I went to the Spanish Fork Hospital. I got a CT scan without contrast then one with contrast. Both came back clear. I was then transported to Utah Valley Hospital. I stayed there for 3 days. I had a 3 day EEG done. No episode during the time at the hospital. I went home. During that time of being at the hospital, I got diagnosed with PNES (psychogenic non-epileptic seizures) which is caused by anxiety, PTSD, trauma and panic attacks. It was a very scary and hard time for me.
I’ve also been doing Botox treatments for my migraines which have helped. I go every 3 months to get that done. I’ve seen significant improvement in my migraines.
I meet with my therapist every week to every other week which has significantly helped my mental health.
I did ketamine half way thru January and all of February, every Monday for 6 weeks. It was an amazing, spiritual, special, and learning experience / journey for me. In 2 out of the 6 sessions, I almost had episodes happen to me. My psychiatrist confirmed for me that my episodes are caused by panic attacks and anxiety. I would come out of the session full of panic and almost crying because I thought I was going to have an episode.
In the middle of all of this, I had a gallbladder attack in September. It lasted 2 weeks of pain on my side where my gallbladder is and not eating or drinking. I had an ultrasound of my gallbladder and that came back clear. I eventually got better.
I increased my Lamotrigine again from 200 mg to 300 mg and that has made a huge difference. I also take Hydroxyzine as needed. I got my medical cannabis card in April and the cannabis helps my body relax so that has been a huge help.
This is before and during my episodes. Before, my eyes get really tired, pressure behind my eyes, blink a lot, migraines, headaches, upset stomach, blurry vision, intense anxiety, vertigo, panic thru out my body, racing thoughts, jaw starts to lock up, my tongue goes to the roof of my mouth, chapped lips, muscle weakness, cough and can’t breathe.
During I get hot flashes where I’m really hot or really cold and shivering, the right side of my body hurts and goes stiff, my whole body mainly my back curls upward, my right foot locks up, my eyes roll upward and my head turns to the right, my jaw hurts, my chin goes upward, I can’t breathe in or out, I make a snoring sound when I try to breathe, I can’t talk, I feel a sudden panic overcome my body mainly in my stomach, it feels like I’m going to poop or pee, intense stomach pain, my face scrunches up, mouth droops on both sides, nose flairs, ringing in my ears, deep depression/sadness, hellish/bad thoughts.
I’ve started to have dizziness real bad, numbness and tingling in my hands and fingers, very off balance, slurred speech, brain fog, a lot of disassociation, muscle weakness, and fatigue. I’ve seen my primary doctor for MS and he said I didn’t have it after reviewing my MRI and brought it up at the hospital and they said I didn’t have it, only PNES.
I am doing better, just those symptoms/side effects really take a toll on the body. My medication and everything is working too. I’ve been better at with my mental health and working so hard at it.
Some days it’s draining but I don’t want an episode to happen so I work really hard on my mental health.
Hey everyone! I'm u/SaltyyyHipsterrr, a founding moderator of r/FNDandPNES.
This is our new home for all things related to FND and PNES symptoms, venting or questions/comments. We're excited to have you join us!
What to Post
Post anything that you think the community would find interesting, helpful, or inspiring. Feel free to share your thoughts, photos, or questions about FND and PNES.
Community Vibe
We're all about being friendly, constructive, and inclusive. Let's build a space where everyone feels comfortable sharing and connecting.
How to Get Started
Thanks for being part of the very first wave. Together, let's make r/FNDandPNES amazing.