I have been diagnosed with Functional Seizures (PNES) about four months ago, and a month ago I started having tics/twitches throughout the day. I was told myoclonus is a part of my FND. My back, shoulders, arms and even stomach muscles will twitch sometimes out of nowhere and other times they are triggered by noises and sensory overload.
Does anyone else have tics and twitching as part of their FND? How do you manage it? Thank you!!
I was diagnosed 2 years ago, I have myoclonus, do not have seizures. Sensory overload does seem to spark it at times, and on occasion mine also just comes out of nowhere. My arms and one leg jerk. My head will jerk to the side, and I also get the abdominal muscle contractions, I wish I had an answer for you, still trying to figure it out myself. I try not to let it interfere with my daily activities. It has slowed me down, it’s embarrassing, (the stomach contractions make me grunt) , but I made up my mind to try living as “normal” as possible. The new normal.
Yes, I can relate, and you’re right “the new normal” I know what you mean. Sometimes easier said than done. But it makes a difference. I’m still at the beginning. My neurologist told me to take it one step at a time to healing and/or being more grounded with FND.
I was diagnosed 4 years ago with these . They are much easier to manage now. I’ve learned what triggers them. I wear caps and sunglasses inside most stores and restaurants. I use AirPods Pro for noise canceling.
Magnesium and potassium are helpful in helping the muscle cramps.
Thank you, I’ve been hearing about magnesium, did it help you with your symptoms?
I think it does help with muscle soreness. It is what is in Epsom salts, the baths help because it gets absorbed through the skin. Magnesium and calcium help with sleep too.
Hi Hon,Yes I had a tick or twitch in my neck, makeing me look as if I was saying yes all the time, it was very embarrasing and bothered me no end, my hubbie told me to take no notice, and like all things attatched to FND, this is a good peice of advice, please try to pay no attention to them, so what if you have them,nobody is looking, and strangly enough this works. I am not poo pooing in any way the stress and anxiousness this must cause you, but the more you worry about it the worse it will get.
After all you are living life for you and nobody else so who cares if you have 5 arms and 2 heads, people are far more worried about themselves than to take notice of someone who has FND.
This may sound harsh and believe me I know how you feel, but try to ride with it.
Does this make sense, I hope i have helped,
I am sending a huge hug to you and wish you well, much luvxxx
Thank you! We all need a positive push sometimes for sure. I know myself and how I feel all my twitches and seizures scare people or make them uncomfortable. When someone is sitting at the next table in a cafe watching me twitch my shoulders and arms, I feel so bad for disrupting their time, which I know makes my twitching worse…it’s a cycle. Hugs of gratitude 😊
I’m a total people pleaser but working hard to undo and unlearn. I’m healing my trauma and recovering from leaving a 22 year marriage so I get it. Not wanting to bother but we are important too and we are going through something horrible our bodies are.
Hi Rebeccaofsunnybrook,Your situation sounds similar to mine. I was recently diagnosed with PNES and then FND after leaving my marriage of 30 years and uncontrolled migraines for the past 5 years. Unfortunately the neurologist told me this isn’t something they treat, “it will get better on its own” and I should find a therapist. I’m currently struggling to find any therapist not to mention one who knows anything about FND! After being told for years the migraines were due to “stress” I’m now told I have another stress related “disorder” but not being helped by the medical team. It’s very discouraging.
I have these plus, it started 10/11/2020 my speech has been affected ever since that day also, I do get a warning aura when I’m going to have big episode seizure but I’ve learned to listen to body breathe slow out, ice on my core stomach chest and neck usually helps bring me back from an episode. Stress frustration emotional upset all makes mine worse I’m on beta blockers for heart. Long road after 15 Drs finally found 1 humble Dr that will listen to me.
I hated my jerks, in public, always thought people were avoiding me, as if I was drunk. But, I was just as bad at home, so it wasn't sensory overload for me. I felt like a wound up spring, I could feel it building up. My gp put me on Levodopa, it's a Parkinsons medication, both Parkinsons and FND are low on dopamine, this medication helps. It has stopped the jerks, made my walking a bit better and helped my slow speech a bit. Don't know how long it will last, I've heard it stops working after a while. Hope you are able to cope and take one day at a time. Take care. Moni
That's how I feel as well in public, sitting in a cafe, my shoulders, arms, neck twitching, and others looking at me...which then makes me feel back for them, and I get anxious, and the twitching gets worse. I haven't tried any medication for this, but I am in a mindfulness based DBT program for FND, so hopefully that will start to help. I'm glad the medication is helping your twitching and other symptoms, that is wonderful. And worth every moment.
For example, cash register people will barely notice, but next in line will stand back. Finally got appointment with another neurologist in March. Starting my list as I forget and these appointments are so difficult to get. I do it on my phone, where I also have timeline of symptoms. Having a forgetery instead of memory it helps. I do hope your program works. Last neurologist said there wasn't any help nearby us. Take care. Moni
I have genuine epilepsy, but I’ve also experienced worsening myoclonus lately. Mine jerks happen in my trunk and legs, and I’m starting to grunt too. Very embarrassing! I haven’t been offered any medications yet, but I would love to try.
Sorry I don’t have any management advice for you. I just wanted to commiserate and let you know you aren’t alone. 😊
Yes the twitching is difficult for me to manage I get them in my legs most days but they do move around and somtimes come with parathesisa so it's painfully uncomfortable.
Since May 23 I started taking 10mg Prozac, a month of troubling health events
It has now been over a month, and though my myoclonus is still there, I am just starting to feel a bit better after some moderate side effects from SSRI that made me feel worse and some extra depression kicked off by a few health events from April-June (bad headache, blood pressure spike, pseudo seizure, detached vitreous, sadness and the seemingly inescapable myoclonus) Also I worry and believe I have developed true Health Anxiety. I resisted taking an antidepressant for years, but relented. It is a slow roll. Exercise has been good and I am at my ideal weight. My blood pressure at home is also ideal and my fast pulse has dropped into a more normal range. I have a second opinion about the pseudo seizure in the works, and my neuro says I can continue my 2mg clonazepam for the myoclonus. Part of my anxiety is wondering If this is still the best treatment for me. Some days I say hang it all and others, I want to revisit the whole thing. Meanwhile, I want to stabilize with the Prozac.
Had enough.. need to know I'm not the only one.
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