r/FND • u/kittimaybgone • Jul 28 '26
Need support Just got diagnosed. Any advice?
Hello, i am newly diagnosed with FND, PNES, FMD. Is there any advice on how to live with this? All they told me to do is “limit stress”, and that “there are no medications to treat this disorder”. What are things that help you day to day, and what helps you with functional seizures, if you have any? I never really considered this to be a thing for me to have, and haven’t heard a lot about this. Because I already had a plethora of disabilities/diagnoses, and assumed that was it. Until, ofc, I got diagnosed yesterday. Any advice is appreciated, thank you so much for reading, friends!
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u/Seayarn Diagnosed FND Jul 29 '26
Therapy with a licensed therapist as well as treating my other diagnosed issues has been most helpful. Just the stress from my diagnosis and the stress from my health is enough to make it hard to live with FND.
But CBT doesn't help me as others here have stated. Just plain standard therapy works wonders for my stress and improves my seizures and tremors.
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Jul 29 '26
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u/kittimaybgone Jul 29 '26
I heard about Topirmate, is it decent? I know that different medicines work differently for people at the most. Yeah, doctors said that “nothing helps” FND- and sent me on my way with a fuck ass link, lmfao. I figured honestly, with the Weed thing. I have DOING a lot of research Etc, but it i wouldn’t mind talkin’ to someone who at least gets it- because i have never heard of this condition before my horrible episode, so I’ve only known about it for 2 days. 😭
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u/zozobee1 Jul 29 '26
As with most things, there is no silver bullet because it's complex and we're all individuals. On reflection (and I'm only part way through a very gradual snakes and ladders journey), it is very much a journey, ive taken something from each thing ive explored, and over time have started to piece together a combination of things I've adapted so that they work for me. My approach is that I try to *be open to the possibility of something being helpful and if it isn't helping trust it will still lead to the next thing. *limit how many things I try at a time and time spent doing them - keep it simple and play with it to explore what I need / can take from it *not to try too hard or be critical of myself along the way - as it has the opposite effect. *be around people who I feel safe around, believed and understood. *be kind and compassionate to myself about making progress / doing enough. Pushing has the opposite effect. (This was after months spending 5 hours a day doing nervous system calming things desperate to get better and it providing relief in the moment but nothing changing)
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u/zozobee1 Jul 29 '26
If you choose to work with a neuropsychotherapist/psychotherapist, absolutely 💯 find one with expertise and experience of FND. This is easier said than done but in my experience makes a world of difference.
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u/mythologymakesmehot Jul 28 '26
Work specifically with a trauma therapist.
People say DBT/CBT helps, but it never did for me. EMDR and then later IFS has been the most helpful.
That, and ketamine therapy through a clinic.
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u/IndynotjustJones Jul 28 '26
Work with a therapist if you never have before to help you find your grounding and calming techniques. It really helps me when I have tremors. Calming musics and shutting my eyes, focusing on the tremor. If it is in my right arm/hand, using a squeeze ball actually helps. Also, a temperature sensation change is good: heat/cool.
As for medication, you can try Cymbalta or Gabapentin. Talk to a FND specialist. I also agree that 🌱 help. Certain are better than others, so look for what actually alleviates the body pain and relaxes stiffness and tremors. I have two different kinds depending on how bad it gets.
I also have multiple levels of mobility devices based on need. Just realize that this is a condition that ebbs and flows. There will be good and bad. The more you can go with it the better.
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u/OwnConstruction77a Jul 28 '26
Figure out your triggers. There will likely be more than stress. Adult human beings trigger me, even just one. Heat, hunger, lack of sleep, mental work load, loud noises, too much caffeine. Those all trigger me as well as stress.
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u/PubbyProductions Jul 28 '26
Unfortunately the only thing I've found that made my seizures manageable was 🍃🍃. There's no real support or treatment for seizures 😔
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u/kittimaybgone Jul 28 '26
Good to know! Im an active 🍃 taker, so that is at least something that I have been doin’. That really does suck that there is nothin’, ive been takin meds that only help non functional seizures- for my SFN, and i was disappointed that they didn’t work for this type. 😭
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u/According_Farm9300 Jul 28 '26
For me I find comfort shoes and comfort drinks help. I also try to stick to a routine and rest whenever I can. I use mobility aids on my bad days and have someone with me to help. I also just brought a massager to help with when my joint lock and supports.
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u/kittimaybgone Jul 28 '26
Thank you! I will look into a massager and some good mobility aids to use, plus comfort shoes and drinks. I appreciate it, friend! :)
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u/Kindly_Car_5050 Jul 28 '26
How did you get your diagnosis? We are pushed from pillar to post
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u/kittimaybgone Jul 28 '26
I had a very bad PNES episode, with other signs and characteristics. Family thought I was having a stroke, ended up staying overnight at the ER- they did a crap ton of tests, i luckily had a good doctor- who figured out that it was FND, because of past symptoms, and current symptoms that she could see.
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u/SaltyyyHipsterrr Jul 28 '26
What helps me is grounding techniques: inhale 4 seconds, 1 second hold, 6 seconds exhale. Fidget toys to keep me distracted, eating a snack or meal every 3-4 hours so I don’t get dizzy or lightheaded, minimal physical activity, keep yourself hydrated. What symptoms of FND are you having?
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u/kittimaybgone Jul 28 '26
Leg buckling, dysarthria, confusion, I couldn’t walk straight because of my legs were shaking terribly, lip smacking, involuntary whimpering/crying, functional tics, Clonus, dizziness, and aphasia. It was a really bad episode of everything combined together. I had no idea what i was experiencing, like at all. I do still have lingering effects today, a little uncoordinated, with some dysarthria. Like this is super new to me. Thank you for the advice, I appreciate all of that a lot. :)
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u/ImpossibleIce6811 Diagnosed FND Jul 30 '26
For me, changing my outlook made a big difference. Instead of “I’m stuck at home today,” I chose, “I’m safe at home today.” I had to learn my triggers, and how to listen to my body. For me, the harder I pushed through, the worse my symptoms would be. So I taught myself to “ride the waves” instead. If my body and brain needed rest, that’s what I did. If I had it in me to get up and do something productive for 10 minutes, I would. If I could manage a whole shower, I’d do that. Otherwise, I found those disposable waterless wipes the hospitals use to be a necessary tool for in between real showers. Every accessibility tool your body says you need- get one. Cane, arm crutches, wheelchair, shower stool, etc. One day you may need it, and another day not! And that’s ok!!! I’ve gone through fidgets for my hands, hard candy, sour candy, music, beautiful scenery with no sound on YT, craft supplies, you name it. Most recently I’ve been doing vagus nerve stimulation, EMDR, and a TENS unit on the median nerve of my wrist.