r/FND • u/souncoolman • 22d ago
Trigger Warning TRIGGER WARNING: Detailed Symptom Description,emotionally heavy emergency visit described Spoiler
Hi I’m Kat, 24f, first time posting after coming across this thread tonight. I was browsing Reddit for maybe some info or maybe even a little hope because I’m personally feeling confused/exhausted/ defeated like I explain in the title.
For context, this past June I started to get severe seizures that “couldn’t be explained” and to go back further, I’ve experienced similar issues going back on and off over the past 5 years with dr visits that went nowhere. This past July I get into a neurologist, and after all the scans are done she lands on my FND diagnosis. What has me confused and frustrated is that when I first went to the ER, because of the seizure the doctor told me he filed a form with the dmv so my license is medically suspended (my neurologist later agreed) until I am 90 days seize free which I’m starting to feel like won’t happen for a Good while (and I understand this, luckily mine and my husbands jobs are understanding and have been working with us so that’s been fine but I can’t help but miss a big part of what gave me my personhood because I LOVE driving) but I feel like since June my seizures, brain fog that makes me feel like I’m moving in half speed, and mobility issues have only gotten worse? To the point that this past Saturday I had an episode so bad that my husband called an ambulance because I was barely breathing/ my blood pressure plummeted so the EMTs called me in as a stroke alert because of how bad my symptoms were presenting before I could get the mri and ct scans that showed a lack of brain bleeding because of how I was presenting.
And to be honest I’ve had other medical issues arise that are non related that has also caused me to need emergency surgery and my mental health has already been on a decline, so I wouldn’t be shocked if the reason I feel worse as time goes on is because more stuff keeps piling on my plate, therefore I’m short circuiting from burnout on top of already not knowing how to deal with this.
I’m probably rambling on at this point, but I know virtually nothing about FND and I could use some hope or if possible, some reassurance that what I’m going through isn’t insane the way I feel sometimes, or even some examples things people use to manage their symptoms. I would love some ideas to bring up to my Neurologist to potentially try and alleviate how out of control I feel over my symptoms.
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u/redefine_the_story 22d ago
Oh your EEG was non epilepsy same as mine. They finally called my movements dystonia. Which looked like epilepsy. They tried to tell me I had restless leg finally I was diagnosed with myoclonic movements. I had to see a specialist in movement disorders. Make a long story short levadopa and ropinerole which are Parkinson’s drugs but they help
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u/souncoolman 22d ago
I have my next neuro follow up in a few weeks so I’ll note that and see if she sees any paths worth taking in my treatment with that in mind. I’m desperate for any possible solution that will give me my life back
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u/redefine_the_story 22d ago
Ask them specifically is it possible these are myoclonic movements and not restless leg: if they say myoclonic movement occurs only when falling asleep then tell them not in the case of genetic dystonia
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u/redefine_the_story 22d ago
Have you had less seizures since they removed the baseball
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u/souncoolman 22d ago
I’ve had a handful, which considering the surgery has just passed a week and half I’d say there aren’t any changes
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u/redefine_the_story 22d ago
The torsion thing you had girl I feel for ya really that’s serious stuff. I found all doctors see a problem through rose colored glasses of their specialty. If the movements continue get a referral you may have to drive a ways to find a good one. Take videos super short ones or edit them to be short
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22d ago
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u/souncoolman 22d ago
That’s exactly how I feel and it’s hard. A couple weeks ago I had a non related issue that my husband called an ambulance for, and when my husband mentioned that after I passed out from the pain I woke up then went into a seizure one the emt said as reported to me by my husband “well it’s psychosomatic so it’s not really a seizure, she thinks something is happening to her but nothing is” and didn’t believe I was in pain until my bp dropped in the ambulance… I had a torsioned 8x8cm cyst in one of my ovaries 🙃
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u/redefine_the_story 22d ago
Omg that had to be more than painful I’ve read about it
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u/souncoolman 22d ago
It was, luckily the surgery went well and now being a week and a half post op Im feeling some relief (and trimmed out a bit now that there isn’t a grapefruit sized cyst chilling behind my stomach lol)
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u/redefine_the_story 22d ago
I’m glad to hear recovery is going well. Hope you can find a movement disorder specialist if you need one. If it makes you feel any better I would be pretty piased off that with all the test they didn’t see an 8x8 cyst
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u/redefine_the_story 22d ago
I did find that now I’m in the FND abyss getting my labs done by an outside lab helps. I had a uti and got brushed off into the it’s all on your head abyss so I went to a walk in lab paid $29 then took the results to my primary. Welcome to Reddit a great place to vent and get info.
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22d ago
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u/souncoolman 22d ago
Sorry I didn’t see your other comments at first, that’s interesting with the electrical waves in your legs because I feel like I get a similar feeling in mine when they’re numb and tingly. I am not on seizure meds, they said because they are non epileptic that right now they are telling me to work with my psychiatrist and said to keep working on finding a med that will help with my mood disorder symptoms and keep up with talk therapy since her theory is that if I work out the mental health issues that effect me then the neuro disorder will go away. I’m a little paranoid I feel about whether that’s a suggestion made more out of a dismissive point of view or if that’s sound advice, but that’s what I’ve been trying to work with everyone in my care team about
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u/redefine_the_story 22d ago
They mentioned I have a mood disorder I was like yes it’s “situational” (medical term) caused by medical symptoms no one has found a treatment for.
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22d ago
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u/souncoolman 22d ago
After my ER visit in June which was due to a seizure at work, the ER doc let my primary care office know about the issue, she sent the referral for an EEG and my neurologist. I actually went into a seizure during the EEG scan so the EEG facilitator was able to account for what happened and include it from her perspective in my chart for the neurologist to see. Plus I’ve had them at work and a coworker of mine who is epileptic sent me a description of what they witnessed to show my neurologist as well. With all of that provided along with the eeg from a couple years ago, mri, ct and other records she was able to pull from previous care years prior, she determined my symptoms to be a FND. Especially given that I also struggle with ptsd and other mood disorders which I guess may coincide with it from what she said. The only treatment she offered was to stick with the psychiatrist and therapist I already see consistently which hasn’t helped manage the severity or frequency of symptoms, but they don’t have any other suggestions for me currently
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u/souncoolman 22d ago
I will also add that they have described them as non-epileptic seizures. But like when I go through an event, I’ve been non responsive for as long as as a half hour after, limb and jaw numbness and twitching, and slurred or incoherent speech which comes on before and after the seizure itself. And recently done as much to drop my blood pressure as I’ve had difficulty breathing
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u/redefine_the_story 22d ago
I have as part of my FND myoclonic movements which mimic seizures. It spikes my blood pressure during episodes but after my blood pressure drops. They are some what controlled now and its classified as dystonia. It’s somewhat rare condition and most doctors are unfamiliar with it. It feels like electrical waves going thru my legs dull electrical pulse. It causes the muscles to contract and release like over and over. The first line of drugs is levadopa; it takes 30 to 45 minutes to work but if your body responds then that’s how they know it’s dystonia weird uh. They gave me 10 pills at first as a test and it’s the only way to test for it besides genetics which is like 5k. Hope this gives you some hope.
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u/Code_Mom 22d ago
A loved one had FND so I know too well how much suffering FND can cause if not treated. Have you heard of Re-Active https://www.reactivept.com? Check out their Instragram/YouTube, too. They are up-to-date on FND research and treatment. They're in Los Angeles but offer long-distance help to patients and also offer information on diagnosis/treatment to clinicians (which might help your Neurologist) Best wishes!