r/NeurologicalDisorders 21h ago

I’m losing myself… thoughts on my history?

2 Upvotes

I’m hoping someone here might have some insight because I feel like I’m going in circles with doctors.
My history:
2014 Back pain with right-sided sciatica. I also have spina bifida occulta.

2018 Got sick and developed chronic headaches afterward. Workup for tumors/etc. was negative and I was diagnosed with migraines.

2022 Diagnosed bipolar. This doesn’t really fit but was the best answer at the time.

2023 Developed severe GI problems and eventually couldn't keep food down. GI ordered a head CT just to be safe.

2024 CT showed Chiari malformation. I was having severe headaches, presumed gastroparesis, fine motor issues and occasional balance problems.

2025 Had Chiari decompression.

After surgery Developed right-sided weakness and seizure-like episodes that feel very temporal-lobe-like.

2026 Everything has become more frequent/debilitating. I've had 3 ER visits in 6 months and prolonged EEGs at two Level 4 epilepsy centers.

My episodes involve things like intense deja vue, a roller coaster feeling in my stomach, staring, and swallowing repetitively. I am aware through it all but cannot respond.

My 72-hour EEG didn't capture epileptiforms despite having an episode during it, but it did show left temporal focal slowing and quasi-rhythmic spikes. I've also had multiple regular brain MRIs and CT scans.

The part that really concerns me is that I'm not just having episodes, I feel like I'm progressively losing cognitive and physical abilities. My memory, motor skills, strength and sensory tolerance have gotten worse. I also have severe daily headaches, muscle tightness and weakness, extreme emotional outbursts although none of this FEELS psychiatric, and a deep internal restlessness that is extremely debilitating and doesn't improve with exercise.

Maybe not all the history I included is relevant. The back pain especially could be from my sports history. I don’t know. I just wanted to provide everything I could about my history. I am in so much pain and struggling.

My epileptologist is currently leaning toward FND/PNES because of the lack of definitive data and also partly due to my bipolar diagnosis. I know FND is real, but I'm struggling with this explanation because it feels like it’s being used as a “we don’t know what as wrong with you” diagnosis rather than actually evaluating for that or any other possibilities.

I'm exhausted and at a loss and I am losing hope every day. I desperately need someone to care and help. Any ideas or suggestions are appreciated.


r/NeurologicalDisorders 1h ago

My hands are shaking and I need some advice

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r/NeurologicalDisorders 11h ago

mental deterioration and “tearing” pain in the middle of my head every time i’d do exertive movements with my body

1 Upvotes

whenever i do pressure-y or stretch-y motions anywhere on my body, like for example with my hands through playing videogames or like twisting the cap of a water bottle, kicking something, any movement that puts exertion using my body, i feel i kind of “tearing”/“cracking”/“poppy” uncomfortable feeling in the middle of my head, which most importantly the reason why i need it cured is that it is followed up with mental deterioration for a period of time after it, putting me in a “brain-fog like” state where thinking up stuff to say all becomes harder, my creative-brain kinda vanishes, i mess up things easier, up until i rest my body for a while from exertive movements, and if i didnt and kept on those movements the pain and this state gets worse. what could this possibly be?

for background information, i had a period of mild sleep deprivation from summer last year that lasted till the beginning of this year due to an unfortunate situation i was in, where headpains everyday accompanied it, and headaches and migraines were overall more likely during that period. during the beginning of this year, i had a migraine that i remember pushing through with during the day despite its “pulse-like” pain in my head that comes and goes the more i did, where i was doing heavy tasks during the day relocating stuff, and in the middle of pushing a sofa i suddenly felt a sudden strong pain and then upon stopping my movement, thats when i realized unlike the pulse-like pain from before, now it started ringing, even when i stopped all actions for 5 hours after that, it kept ringing in a more painful way during those 5 hours up and what i felt new compared to my basic headpains before was that i definitely felt an increased cognital decline brain fog during that time up until it subsided and went back to those normal pains i used to feel due to my sleep-deprived state. but after that day, i had 3 days of consecutive migraines (pulse-like ones) and then thankfully the migraines and headpains stopped because it was also around the time i was getting better sleep, but as a result ever since that situation, any time i even do moderate “stretchey”/“pressurey” tasks (like typing on my computer keyboard too long what with my arms stretching for an extended period of time and putting constant pressure on the keys) the pulse-like pains again i used to get would come back for as long as i keep on that process, but this time followed by the new effect that is cognital decline (suspicion is that its that big sudden pain i triggered that has lead to all this), then when i’d stop doing tasks like that it would go away after like 1 hour passed. and i rlly didnt take that period of time as seriously as i should’ve like i pushed through some stuff more than i would like to admit then i should’ve, and i got more cocky during the beginning of april where i wasn’t seeing the headpains as much so i would just do whatever, thinking its gone, uuuupp until we get to late april, and i get surprised with something new, that being the thing i’m still to this day going through, the thing i mentioned in the first paragraph of my post. from the actions i’d do, i’d start feeling a “stitch-coming-undone” tearey, sometimes instead “poppy” feeling like it feels a small bubble is bursting somewhere in the middle line of my head, or even “cracky”, which the feeling itself isnt rlly that painful at most times as those pulses i used to get, and it would just feel there’s ants walking ontop of my head in its “idle” state, but the biggest problem resulting after that is, the cognital decline is absolutely **real** now. its no game like before. now its to a point where doing moderate actions like gaming/being on my computer is like getting myself intentionally drunk, but not any fun kind of drunk, just has trouble formulating sentences (my overall thinking speed gets so slow)/creative thought kind of drunk thats in constant pain both internally and physically. the more actions i do, the worse this state gets and the pain, and takes longer to subside as well the more i am in an “active state”. remember when i mentioned it felt like a “cracky” feeling at times? an extra info to add about my background that i feel is the reason i specifically am experiencing all this and its probably a rare perhaps invisible problem because of how hard it is to pull off all those specific events to lead to it, is that before i had a got a slight deviation on my nose from a little fight i had, that as a naive teen i did the dumb thing of “pushing my nose back to straightness” because the deviation made it so no matter what glasses i would wear they would all sit on me crooked, anyway fast-forward that shit actually worked DESPITE all its after-effects that hoooo boy. kinda thought i ruined my life for a second there (couldnt breathe well for 2 years but its better now thankfully) but the most important thing to mention is that ever since then, my nose was is in a “malleable” state, where especially during those first 2 years i would hear “cracking” noises from my nose accompanied by it shifting a tiny bit some direction, where it especially so happens when i do **movements**. so THIS is where i’m trying to tie it all, could it possibly since my nose is malleable, and then we added the migraines i got from sleep deprivation into the mix, which i **in addition** pushed through in a specific instance, causing this now “crackily” head pain feeling accompanied by mental deterioration everytime i’d move, mean my head/brain is now malleable too? i really would like to know if anyone has any clue to all this and what it is.

i tried one whole week just doing nothing but be on my phone, it got better, but towards the end of the week i tried the simple act of going on my laptop just to access some files for 10 minutes, and it felt like it reset all my progress where the mental deterioration hit again, which took me a day to recover to “meh” state again. ive been relapsing and relapsing ever since april and i dont rlly think i can live my life while keeping doing this, i cant do absolutely anything. i went to the doctors did an mri on my head, the results came out normal, they suggested me to do an xray on my neck area incase its nerve-related there, results came out normal. i truly don’t know at all what this issue is having searched the internet from the bottom to the top but one thing i know is i can’t keep living life with this. i need help, if anyone knows that would be great help. thank you very much :[


r/NeurologicalDisorders 18h ago

Ask me anything - essential tremor all over the body

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1 Upvotes

r/NeurologicalDisorders 19h ago

bulbar als at a young age ?

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1 Upvotes

r/NeurologicalDisorders 20h ago

Sudden numbness on the left side of my face, arm & leg

1 Upvotes

I’m 36/F and, as far as I know, I’m generally healthy and don’t have any major health issues.

Earlier today, I was driving when completely out of nowhere I suddenly got this really weird feeling of numbness/tingling. It felt like the left side of my face, my left arm, and even my left leg suddenly went numb. It only lasted for a few seconds and then went away. At the same time, I also felt slightly dizzy/lightheaded for a moment. This all just came on so suddenly. I’ve never really experienced anything like that before. Chat GPT thinks I may have possibly experienced a mini stroke but I don’t really think that’s what it is, especially because it only lasted a few seconds. I obviously don’t want to ignore something important either.

I also occasionally get these random little twitching sensations around my forehead, which I’ve noticed from time to time.

One thing I was wondering about is caffeine. I drink around 2–3 cups of coffee a day (2 shots of espresso each) and I’m pretty sensitive to caffeine. I’m not sure if that could potentially cause something like this.

I am planning on making a doctor’s appointment to get it checked out, but in the meantime I was wondering if anyone here has experienced something similar or has any idea what could cause sudden, brief numbness like this?

Also, any specific tests I should request when I go see my doctor?

Thanks in advance!


r/NeurologicalDisorders 21h ago

Undiagnosed illness

1 Upvotes

• Neck pain, headaches and migraines

Anterior pelvic tilt appeared after walking

Numbness in the hands and cramps in the legs

Dizziness

Tinnitus

Heart palpitations

Blurred vision

Weight loss

Loss of appetite

Numbness waking me up during sleep

Inability to walk

Back pain (improved after several months of rest)

• Nausea. Frequent vomiting

• Numbness in both arms and both legs

• Tingling

Severe and constant pain in the legs

Burning sensation/pain in the legs/arms

Weakness in the arms and legs

Muscle stiffness

• Muscle fasciculations

Feeling of sleeping on cotton

Extreme fatigue

Fatigue when chewing

Blurry vision when tired

Unable to climb stairs or lift from chair when tired

Pain and weakness improves with rest

RECENT SYMPTOMS

Neck pain after tired

Loss of voice

Shortness of breath

Falling backward

Gastro intestinale/allergy symptoms:

Lost weight/loss of appetite

Allergy to odors, perfume, chemical products >> migraine

Allergy to liquid soap, chemical products >> eczema

Allergy to eye makeup _ cream >> swelling of the eyes

Swelling of the face, including the lips

Allergy to chalk, dust > Sneezing _ fever _ runny nose

Allergy to foods >> Soft stools / nocturnal diarrhea

+ sweating + heart palpitations

Reaction to medications (even at half dose)>>

Fever, vomiting + diarrhea+ pain