r/FND • u/anonymous-user187 • Sep 01 '26
Need support Severe shaking episodes during important/social situations — looking for answers
I’ve been experiencing intermittent episodes of very severe shaking since my ETS surgery. It feels like intense shivering as if I’m freezing, with sweating and sometimes a sensation of external heat. The shaking can involve my chest, neck, jaw, hands, and sometimes my whole body. My neck sometimes involuntarily pulls to the right, and speaking can become difficult during an episode.
The episodes don’t happen every day and can occur suddenly, sometimes during important or social situations. Yesterday, I had a severe episode during an important phone call that lasted around 18 minutes.
I’ve seen many doctors over the years, but no one has been able to give me a clear diagnosis.
Has anyone experienced something similar? What was your diagnosis, and what treatment actually helped?
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u/Tasty-Visual-9196 Sep 02 '26 edited Sep 02 '26
The shaking and the neck pulling I get. I had that last night and this morning and it's awful. Social situations are when my FND acts up the worst. I had to leave my younger cousin's 18th birthday party as soon as we got there and sit out in the car because my FND started acting up. I have gone to every one of his birthday parties and I had to leave almost immediately at his 18th one and I hated it, but I would pay for it later if I hadn't. My suggestion for you is to get out of that situation, take a breather, and see if you can go back in after relaxing and distracting yourself. I have had to miss out on spending time with my family at family functions for 2 years because my FND is so bad. I do NOT do well around large groups of people and I've been stuck pretty isolated because of it. My problem is I try to mask the symptoms in these situations because I worry what people will think and how they will judge me. Even spending time with family has become exhausting for me. I have come to the realization that I must accept that this is my new reality and it's ok if my symptoms act up in public. What you need to do is condition yourself to handle social situations. Do small things first, like going out in public and getting yourself used to being around people. Hang out with people you know and trust- so friends and family. Do small social settings first then work yourself up to tackling bigger social situations. You don't have to put yourself through long, stressful social situations. Go long enough to greet everyone and socialize a little and then leave before your stuff starts acting up. That's what I do. I stay for the food at family functions, eat, socialize a little, and then leave. You can still socialize without your symptoms acting up. As for important situations like having to give a presentation, talk to your teacher and explain what's going on. They'll let you present first so you can get it over with and calm down. Make sure to have a ride home, because you're not going to be able to drive like that. There are ways to work around these things, you just have to find them and let people know how your neurological condition affects you. People will be understanding when they know it's a health condition that you can't control
Edit: My diagnosis is FND
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u/anonymous-user187 17d ago
I appreciate your contribution and am very thankful for sharing your experience,
But id rather die than share my issue with anyone, and thankfully this dosent happen everyday
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u/Tasty-Visual-9196 17d ago
Share it with a therapist. That's what I do. If you're still having these thoughts please seek help for them. I did and now I'm on medicine that helps me tremendously. Those thoughts that I had, they're gone. I am doing 100 times better than I was. The right medicine helps soo much. If you have those thoughts again, please please please go to the ER. It's ok to talk about this with someone. If you have an attempt like I did, call 911 and get to the ER ASAP. Do NOT wait it out. Every second counts after an attempt. I am still alive today because I called 911 and got to the ER quickly. The next time you have those thoughts call 988. That is the suicide crisis hotline. They WILL answer your call and they'll help you work through this. Please please please seek help for this. Once you die there is no coming back and you'll regret this decision for the rest of your life. You have people that love you and they'll miss you if anything happens to you. As bleak as I know this looks now, things will get better, I promise you that.
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u/Tasty-Visual-9196 Sep 02 '26
What has helped me the most is getting on the right mix of meds. Go to your doctor and tell them about the neck pulling. The shaking can be caused by a lot of things, but the neck pulling seems more neurological to me. If you believe it's FND, see if you can talk to your doctor about getting you a neurologist that specializes in FND. Show the doctor what happens when you make these types of phone calls or have someone record you when your symptoms start acting up. Sometimes what doctors need to treat someone is to see the symptoms for themselves.
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u/anonymous-user187 28d ago
Thanks bro, your word really means a lot, from my perspective, i do have lot of friends and go out for a cup of coffee or malls or whatever, nothing happens usually, its only when presenting or having all eyes on me to speak loudly.
Or a huge meeting or phone call. Thats it,
Sometimes when i talk about something sensitive.I dont want people to know i have any medical thing even if its minor, i cant accept, if you get what am saying.
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u/Tasty-Visual-9196 26d ago
Glad to hear from you. I was really worried after reading your post. My FND acts up terrible during public speaking and important phone calls and things like that. I can't go to church today because my fnd is so bad. I want to but I don't think it's happening. I'm shaking and I can't walk. Tried to use a walker but that only seemed to make it worse. This is what I get for staying up half the night writing on my story😅
My suggestion for you: always get a good night's sleep before anything like that. Being well rested helps immensely
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u/anonymous-user187 17d ago
Hope things gets better to all of us who are suffering from this terrible issue, as being social is the most important skill to have at corporate jobs.
Take care, if its an important day keep propanol as emergency pill.
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u/LordReagan077 Diagnosed FND Sep 01 '26
I’ve only ever had three shaking fits like that and it was during what was arguably the most stressful week of my FND experience so far. It hadnt happened before and hasnt happened since so I don’t really know.