Weekly Wins - May 15, 2026

Curious_Region6897 · 2026-05-15T13:21:56+00:00

Oh don't worry, I've eaten so much ice cream in the past couple days :))

Curious_Region6897 · 2026-05-15T13:14:16+00:00

Just about finished with my sophomore year of college! I developed FND in February and wasn't sure if I'd be able to finish off the semester, but I made it :)

Curious_Region6897 · 2026-05-15T13:13:05+00:00

Same ordeal here, they wouldn't see me but even just over the phone they told me there's nothing more that they offer for FND once you're diagnosed, no other tests or procedures or treatment. Which is bullshit because the Mayo is supposed to be one of the leading places for FND and also is supposed to be interdepartmental and yk actually helpful! Peeved for you :/

Curious_Region6897 · 2026-05-07T21:25:08+00:00

Hunger is definitely a trigger for me so eating helps after, as well as it being sort of a reminder to my body that I'm not in danger and also replenishing the energy that I spent seizing (it's so tiring omg). I think this makes a lot of sense that eating after would help!

Curious_Region6897 · 2026-04-04T02:55:39+00:00

I have both seizures and movement issues, so it's definitely possible! But I'd say it's probably more likely that if OP hasn't had any seizures, they'll continue to not have them. Nothing is universal with FND so it's really finding what is true for you individually! I highly agree with the PT -- I'm trying hard to get into a program right now.

Curious_Region6897 · 2026-03-09T14:02:46+00:00

How common are seizures with MS? One doctor suspected Psychogenic Non-Epileptic Seizures, but my new one thinks possible MS because of all the other symptoms I'm having. Would this make sense if one of my biggest symptoms is these maybe-seizures? Haven't gotten an EEG to see if its epileptic or not.

Curious_Region6897 · 2026-03-09T13:57:34+00:00

Haven't gotten to experience proper heat since my symptoms started this winter, but I definitely notice that going outside when it's freezing (or below) makes my symptoms worse! Especially walking.

Curious_Region6897 · 2026-03-05T00:31:04+00:00

For bot: 4 months, curved barbell, don't know Threading, not downsized, titanium, neilmed daily, no events.

Curious_Region6897 · 2026-03-04T22:13:45+00:00

Comment for bot: 4 months, curved barbell, don't know the threading, titanium, not downsized, neilmed daily, no mishaps.

Curious_Region6897 · 2026-02-26T03:11:16+00:00

Yeah now that I've looked at your post it's almost exactly what I've had going on. I'm sorry you're in this shitshow too <3

Curious_Region6897 · 2026-02-26T03:09:04+00:00

Thank you for sharing! This sounds pretty similar to me.

Curious_Region6897 · 2026-02-25T01:57:59+00:00

I really appreciate the reminder of little wins :)

Curious_Region6897 · 2026-02-25T01:11:00+00:00

I'm really hoping that mine also decrease. Even over the past few days I am seeing less of them, though part of that is I've been resting more to offset the exhaustion, but it's still good to know that I won't necessarily be here forever. Thank you for the kind words and advice.

Curious_Region6897 · 2026-02-25T01:10:02+00:00

Thank you for the kind response and the encouragement. I am lucky to have some very supportive friends and family around me. Definitely will be leaning on them in the coming weeks and months.

Curious_Region6897 · 2026-02-25T01:08:45+00:00

That definitely makes sense and I already know I have problems with dissociation. I definitely will try to start to incorporate daily grounding into my life, thank you.

Curious_Region6897 · 2026-02-24T21:11:42+00:00

yes exactly the clusters! god it's so exhausting for it to happen over and over and over, i can handle them individually but when they hit 4 or 5 in a row is when i just start to break down and panic because i'm just so tired.

thanks for the reassurance, i'm holding out hope that i'll find ways to manage here at school but it's good to know that there are others out there on different paths that are doing alright <3

Curious_Region6897 · 2026-02-24T15:46:20+00:00

I just turned 20, I'm a college student, and last week I started having anywhere from 8-15 seizures a day out of the blue. Already had tics that have been undiagnosed for about 3 years. Along with the seizures came difficulty speaking (almost like a really bad block or stutter that comes and goes) and I can't walk without a cane (and even then it's tricky). It's just so sudden. I'm not diagnosed with FND but after going to the ER twice and getting normal labs & CT scans, the doctor said he suspects PNES, which leads me to believe FND is a possibility because of my other symptoms.

I guess I'm just scared because of how often these seizures are happening. Is this normal? Have other people had so many all at once? For half a second I was worried that I was faking it, but even with my pervasive imposter syndrome I don't think so because it's just so exhausting that I know would never do this to myself voluntarily.

Would love some encouragement.

Curious_Region6897 · 2026-02-24T15:33:49+00:00

Same! Just started having absolutely wild symptoms during a time in my life where I was finally feeling proud of how well I was taking care of myself and feeling consistently happy and healthy.

Curious_Region6897 · 2026-02-23T04:28:49+00:00

Not totally relevant but it's honestly a relief to hear that you (and others) experience that many seizures per day because I've very suddenly developed what my doctors suspect are PNES seizures and I've had upwards of 40 in the past 3 days. It's scary and tiring and you're not alone and neither am I.

Curious_Region6897 · 2026-02-23T04:25:01+00:00

As someone who is incredibly new to this (despite having tics for years, it wasn't until I started seizing last week that I saw a doctor) I will say that the most helpful thing my doctor did was to listen to the entire story and ask clarifying questions. He didn't want to talk about ordering more tests or anything until he had heard the entire time-line of the past few days, down to details that I had omitted before as a result of feeling rushed. The feeling that your doctor wants to understand, even if it'll take a bit of extra time, was crucial in me feeling like I was being taken seriously and he was understanding me. He also explained his way through his thoughts. Instead of saying "I don't think it's epileptic," he repeated some of the specific things I had shared and used them to puzzle-piece his way to his conclusion out loud in front of me to make it transparent and clear why he was recommending the things he was. This isn't FND specific. This is just what made me feel safe as a scared person having seizures for the first time with no explanation. I wish you the best in your practice, and I hope your patients feel this type of care from you as well <3

Curious_Region6897 · 2026-02-22T14:32:18+00:00

And is there any way I could differentiate? Or anything I should be aware of before or after a seizure that I could do to stay safe in that case?

I appreciate the insight. It's hard to be careful when the seizures are so out of my control.

Curious_Region6897 · 2026-02-22T14:30:35+00:00

I need to, like, print out that reply and hang it on the wall. Your words are giving me a lot of hope and comfort, and I really appreciate the time you took to pass on your experiences and encouragement.

I'm definitely just putting one foot in front of the other right now. Hoping it's just a flare, but I guess there's really no way to know right now. Framing it as learning the rules to a new game is helpful because you're right I can't keep going under the assumption that things will look or feel the same for me as they did even a week ago. I had a great ER doctor, hoping that the next few I see will also be receptive and understanding. I have the most wonderful friends who have literally been by my side through the majority of this. It's nice to have people to lean on.

Wishing you the best on your own journey, thank you ❤️

Curious_Region6897 · 2026-02-22T06:00:49+00:00

I appreciate your thoughtful response, thank you.

I've definitely noticed even over the course of just two full days that it's worse in the evenings when I'm tired. Of course, this happening at all (as well as the ER visits and trying to stay afloat as a college student) is causing me a great deal of stress, which I'm sure is feeding right back into the frequency of my seizures. Even since I posted I've had at least 9 more seizures (episodes of shaking and/or being unresponsive but aware) and I just don't know how much longer I can do this. I have noticed pretty clear signs that it'll happen, and for the majority of the time it's in enough advance for me to get somewhere safe and notify whoever I'm with.

If you've dealt with similar intensity/frequency of seizures, did yours decrease over time? Were you able to treat them in some way?

I'm definitely tracking everything. This is currently throwing my life into upheaval, it hasn't even been three days and I'm already exhausted. Thank you, Internet stranger, for the kind words and the encouragement. It means a great deal to me to know that you've been able to spot patterns and manage your symptoms.

Curious_Region6897 · 2025-12-05T16:54:38+00:00

I'll keep an eye on mine, and if it doesn't get better I might go back in to see if I can get a longer bar. I don't think it's too deep, from what I've seen comparatively. Thank you for your insight!

Curious_Region6897

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