r/askneurology

I am 31, F. Almost 2 years postpartum. Last July, I began having sleep disturbances which have led me down a path of diagnostics for over a year. I have been to the hospital 3x in the last year. Last July, I woke within 30 minutes of falling asleep with a racing heart, dizziness, pulsating/vibration in my abdomen, full body shaking and feeling that I'm going to die, not just impending doom. The first time it happened, I immediately ran to the shower and jumped into it freezing cold. It increased from there, 1-2 times weekly. When Christmas rolled around, I was eating all the things and it kicked off. From there, I decided to go GF (not completely, about 95%). My issues improved, it would happen maybe once a month (maybe when i accidentally ate gluten but never paid attention). Fast forward to this summer, I end up with gastritis, esophagitis, etc. I go to GI and they want me to gluten challenge for my upcoming endoscopy (I am being check for inflammatory bowel disease and the CT w/contrast was to r/o pancreatitis/appendicitis and not related to my sleep issues). 2-3 days into the challenge, they began again. It is now nightly. I am terrified to go to sleep. I decided to see an integrative medicine doc who thinks the gluten may be triggering a parasympathetic response by inflaming the vagus nerve. I feel like an absolute nut job. Nobody but her has taken me seriously. I have been to cardiology - my heart monitor showed SVT and possibly A-tach during these episodes. I was cleared and given PRN propranolol which i will take if I can't get my HR down during an episode. I had a sleep study, showed mild sleep apnea (8 events of hypopnea per hour i believe it was). I have had every lab under the sun, all normal except elevated fecal calprotectin (288). I have had a CT w/contrast, abdominal ultrasound for the pulsating - nothing. Where do I go from here or what kind of specialist? Its ruining my life. Outside of this, I do have autoimmune symptoms, hair loss, fatigue, severe joint pain, brain fog (have been experiencing these symptoms since 2022). All labs, including thyroid appear normal. Any insight is helpful, I'm at a loss. The symptoms are same as above, racing heart, shaking, dizziness and sometimes black spots and feeling like I could pass out - always within 30 minutes of falling asleep. If I go to sleep and wake up at say 1am and go back to sleep, it doesn't happen. Just the initial. I should add that when I am falling asleep, I do have visual hallucinations sometimes but I am aware that I am awake.

Health history -

GI problems (bloating, intermittent diarrhea) had endo in 2013, PCOS (on spironolactone and metformin since 2018) - not your traditional PCOS, normal periods and got pregnant easily. High DHEA sulfate (still in the 500's despite medication).

Current meds since symptoms - histamine support, Boswellia for GI, liquid GABA/l-theanine and a natural sleep aid (neither of which are helping). The only thing that knocks me out enough to not experience and episode is wine, which obviously i'm not going to drink wine every day but it's tempting.

*another side note, I have breast implants (2020). That's the last piece I'm exploring but did consult a surgeon and got a price for a complete capsulectomy. My integrative medicine doc doesn't think it's my implants and thinks its dietary because some of my symptoms began in 2017. Not the sleep part though and that is my main concern.

2 months into bulbar symptoms which started off as slight swallowing hesitancy has now turned into nasal regurgitation, actual swallowing issues and slow moving heavy tongue With every single meal. Coughing on even just water.

I know a lot of folks here have twitching and they think they have ALS… I’d like to offer peace of mind that if twitching is your only symptom and you don’t have any other problems, you’re most likely fine. As for those of us who are actually being referred to neuromuscular specialist because of a family history of ALS and progressively worsening bulbar symptoms, luck is not much on our side.

I am extremely frustrated because I have no diagnosis. I understand it takes space and time and progression, plus EMGs, etc., but my next EMG is not until November 17th. And yes, I am on the cancellation list already.

my SLP provides tricks and techniques such as chin tucking, only taking one sip at a time, or eating smaller bites of food, but what the doctors have failed to answer is WHY am I being required to change my eating habits when I never had issues before? It’s not normal.

This is kind of just a rant. I’ve been extremely depressed, and I work a full-time job and take care of family members, so the thought of having ALS at 29 years old is really excruciating. If I had an answer, I would just quit my job and live with a relative so I can spend as much time with my family as possible, but not knowing if I do have ALS, I still have bills to pay, so I’m stuck working at this job trying to fight through each day, not being able to eat and drink like normal, Having speech difficulties and tongue/throat changes. All while still having to wait over a month for an appointment.

Most people on here seem to have limb/twitching symptoms. Is there anyone who can chat with me regarding specifically bulbar?? please come to the front! We are in this together.

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I’m (21w) trying to understand what happened with my boyfriend’s seizure and whether staying awake after taking his morning medication could have made a difference.

He (22m)has sleep-related epilepsy, so his seizures have always happened during sleep shortly before he wakes up in the morning (Around 6-7am) He takes 500mg Levetiracetam twice a day, at 7am and 7pm.

He started taking keppra mid March of 2026 and was seizure free for about 6 Months.

And about 5 weeks ago he had a cluster of 3 tonic-clonic seizures in one day. All of the seizures where really bad.. with stiffening, jerking and tongue biting. After the third one he got his rescue medication. He doesn’t remember any of the seizures.

After that he was seizure-free again for around 5 weeks.

Yesterday he woke up around 7am, taking his morning dose. I remember because i always wake up because of the alarm. Anyways, we both where really tired and since we didn't need to work, we decided to go back to sleep for another few hours.

Then at exactly 8:57 I woke up because I thought he was talking to me. I got up, looked at him, and realized that nothing sensible was coming out of his mouth. He talked as if he'd invented a new language... that lasted for about 5-10 seconds, and then he quieted down, slowly touched his chest, and I knew immediately what was going to happen next. I got up, got dressed, and when I came back, he let out a loud scream and had a grand mal seizure. The seizure ended at exactly 9 am.

Afterwards he was extremely confused. For example, he had one sock on his foot and was holding the other one in his hand, but when I asked him what he was looking for, he said “the other sock” even though he was literally holding it. He was also extremely exhausted afterwards and slept for a long time.

So now I’m wondering about the timing.

If he had stayed awake after taking his 7am medication instead of going back to sleep, could that possibly have prevented the seizure, because he only has the seizures while he's asleep or would it have made no difference and he would have had the seizure while awake?

I'm just trying to understand what's happening and how I can support him better, as I know how stressful the whole thing is.

I am grateful for any help!!

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I was trying to avoid posting lol but I’m looking for some slight insight if possible. It exhausting to run down the timeline, but since my emg, almost 1 month ago, I’ve noticed a slight change. My right calf has become weaker, that I’ve noticed. I can no longer lift off my heel to a self-weight bearing toe stand. I can try but my foot instinctively leans to my smaller toes causing a loss of balance and just not able to lift with strength. I noticed the change four days ago. Driving has become a little difficult the past few days due to that instability. My calf will begin to cramp/ache while constant movement break to gas pedal. I’ve had mris, X-rays, emg. Waiting for nerve ultrasound next week, Monday. I’m curious now if they could check behind my knee or further up my leg also to spot what could be causing this sudden change. Has anyone experienced this weird change? My emg findings are in a previous post but for summary: acute-to-subacute, non-localizable, right common peroneal neuropathy, a conclusion based on the small right superficial peroneal SNAP, relatively small right peroneal CMAPs, and EMG findings of Fibs/PSWs with minimal/no chronic neurogenic changes in the right tibialis anterior and peroneus longus. There is no focal slowing across the fibular head. Thank you in advance for any insight or similar experiences.

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Hi everyone,

I’m not sure if this is the right place for this kind of request, but I’m asking in good faith. i’ve made a post on the french equivalence of this subreddit couple of days ago but users told me i’ll get more answers on this sub because people are more active here.

I am a linguistics student working on a literature review. Since my father has MS, I chose to focus on the cognitive-linguistic impairments associated with the disease : I’ve noticed how his ability to name objects, explain things, and even his vocabulary have gradually been affected.

Surprisingly, I’ve found a wealth of resources (conferences, scientific papers and research, theses, dissertations, and articles from various MS organizations), but I haven't found a single press article about speech disorders in MS patients—and I am required to include one for my literature review.

This subject is incredibly close to my heart : it has shaped and transformed my relationship with my father since my early teens. It’s what drove me to study linguistics (with the goal of becoming a speech-language pathologist for patients with MS and other neurodegenerative diseases, and conducting research in neuropsycholinguistics). I would be so sad and disappointed if I couldn't present my end-of-semester literature review on this topic simply because I’m missing one press article.

So, if you happen to know where I could find substantial press articles covering MS and language—whether spoken, written, conceptualization, or the expression of ideas, or even somewhat simplistic or naive pieces about "solutions" (for instance, I’ve seen articles on the benefits of video games or learning foreign languages ​​for people with neurodegenerative diseases)—I would be very interested. They don't necessarily have to be from the English speaking press : any leads on where to look would be greatly appreciated.

Wishing strength to everyone fighting this disease in all the forms it can take, i spent some time reading this sub before posting this and i’ve been deeply moved by a lot of people sharing experiences, sadness, comforting things, hopes, pain, frustration and curiosity together. im glad this place exist and i wish my dad could understand english to find comfort and understanding here.

I am 24 F and normal weight, athletic build, and otherwise healthy individual. I was just discharged from the hospital for a severe migraine. Symptoms were loss of vision on one side, numbness of the right hand, pounding headache, light/ sound sensitivity, vomiting, nausea. I had a dyed CAT scan and MRI which revealed a jugular thrombus on the proximal right vein. I have no possible explanations for why it might form in that location. I was placed on a high dose of eliquis for the next week, and continuing for at least 3 months.

I was lucky the clot was in my venus and not my arteries as that could have caused a blockage to the brain. The neurologist came to the conclusion that the migraine was a separate incident irrespective of the clot and wasn't caused by a blockage of the brain.

Based on that conclusion, it seems that the clot would not have been discovered if it wasnt for the migraine. Why wouldn't I have any symptoms related to the clot? Would I know if I had another clot, since I experienced no symptoms with this one?

The doctor who first worked with me in the ER was doubtful and had to double check with the MRI staff because he didn’t believe the results at first. He said he has never seen a clot in that location before and was very surprised of the findings. Has anyone else had a clot in the same location? If so, what were your symptoms and what is your current treatment plan? Do you have proclivities to getting more clots due to genetic conditions?

Anything helps, even if you haven't had a clot in your jugular vain, if you have any piece of advice that would be reassuring I would really appreciate it.

TLDR: is this anything?

Just discussed radiology report with my neurologist, report did not mention this area on imaging (dark crescent left lateral frontal/temporal region, ~7.8mm at widest part). The report also didn’t mention a large paranasal retention cyst (~2.5cm) which I know is an incidental finding, but it made me concerned that findings may be omitted that could be relevant.

Current issue: new daily headache following procedure involving spinal anesthetic. Started as classic PDPH (positional headache, light/sound sensitivity, tinnitus, etc), attempted conservative management for 2 months (fluids,caffeine, bed rest). Headache changed somewhat in that time - along with “classic” symptoms, now experiencing some days waking up with headache (as opposed to developing through the day when upright) and headache no longer fully relieved by lying flat. Anesthesia did not want to perform blood patch due to change in symptoms, referred to neurology & imaging.

Radiology report - MRI/MRV brain & MRI spine showed no evidence of CSF leak, no pathological enhancement or evidence of prior hemorrhage. My neurologist did not review DICOM directly at appointment (or at all?). I know the spot in image is likely CSF - not enhancing on FLAIR, bright on T2, but there is a dark spot (?) on DWI. Obviously not a radiologist though!

History of migraines with aura (lifelong) and head trauma in childhood/adolescence - 2 incidents involving loss of consciousness, did not go to hospital.

Demographics: 30F, 190lb, 5’8”. Non-smoker. Meds - propranolol, rizatriptan, Cambia

Not asking for diagnosis or anything, would just like to know if this worth a second opinion? Or am I just really overthinking a benign finding?

Looking for insights - five year old child has early onset epilepsy (multifocal), tonic clonics, refractory, maxed out on clobzazam, brivaracetam, and carbamazepine. Has had ataxia and fine motor issues preceding onset of seizures. Normal MRI, GDD, etc etc.

Child crashes out for weeks AFTER an illness - mania, grabbing head and screaming (seizure? Headache?), extreme (but variable) fatigue, weakness, break through seizures. At a loss, they can’t go to school like this.

Has anyone experienced something similar? I had a reco about GLUT1, we didn’t see any variants of concern on our sequencing.com results but still possible.

No bot or AI responses.

ETA we are currently waiting on trio exome results through our health system but feeling like I can’t wait another month.

i’m 21F, 5’4, 210lbs, have PCOS and some mental illness and take the following medications: lexapro, busparone, wellbutrin, vitamin D, occasional melatonin. i came off of zepbound about 2-3 months ago, because my insurance stopped covering it (unsure if this is related).

about a month ago, my hands started becoming tingly, like they were falling asleep. this happens when i am laying down, or my hands are bent/ stationed in one place for at least 1 minute or 2. usually i just move my hands or stand up and shake them, and it goes away (sometimes quickly, but sometimes not). but it started happening while i am sleeping and am unable to move my hands, so they become really numb and tingly, to the point where i am in so much pain. it wakes me up some nights 3-5 times. i immediately just stand up, go to the restroom and shake my hands and try to wake them up as much as i can so i can go to sleep.

i had mentioned this is my psychiatrist, just because i have ocd and it was really making me anxious and i couldn’t stop worrying about what was wrong, and they recommended that i go to the er.

i went to the er about two weeks ago and they ruled out some things with some ct scans of my head and spine. they also took some blood work, which came back normal. i left with no answers after 6 hours at the er and they just told me to follow up with my PCP.

i had a regular appointment with my PCP that next week, and had mentioned it to her but she didn’t seem too concerned. she said she would call some additional bloodwork (i was worried about diabetes or something due to coming off zepbound, and my bloodwork at the er wasn’t fasted). she hasn’t called this bloodwork in yet and i’m crazy anxious about this.

the tingling keeps me up at night, makes it harder to get ready in the morning as my hands slowly adjust to being awake. it is really affecting my overall sleep and wellbeing.

i’m just looking for possible answers, maybe there is something the doctors missed?

Alongside all the other symptoms, I’ve been suffering the most gruesome one so far has been the derealization personalization with these tongue issues. I feel like my tongue is too big for my mouth and I always have excessive saliva. I’ve been tested by doctors and they say I don’t have anything, but I’m having a hard time believing it, especially when my tongue is uncomfortable every day all day.

burning skin sensations on thighs,pelvic,arms,tingling in hands. moves around from thighs to arms and fades in and out. so far blood tests normal. hve mri's coming up. anyone have this