r/askneurology

I’m curious if anyone else with hemiplegic migraine has experienced something similar.
I started getting hemiplegic migraines frequently when I was in 4th grade. As I’ve gotten older, they’ve become MUCH less frequent…now I might have one once a year or even only every few years.
I do have a lot of health anxiety surrounding my migraines and sometimes worry about how HM could affect me long-term. I’ve noticed some pretty consistent triggers over the years, including intense/rigorous exercise, strong smells, and periods of significant stress.
Recently, I’ve noticed something strange around/after orgasm. I don’t get a headache, but my hearing suddenly becomes very muffled, almost like I’m underwater, and I get tingling in one hand. It’s temporary and goes away.
I’ve also experienced explosive headaches after orgasm in the past, but those were separate episodes i believe.
My biggest concern is whether orgasm/sexual activity could somehow trigger a stroke or another serious neurological event because of my hemiplegic migraines. I know migraine aura can happen without a headache, but I’m having trouble finding people with HM who experience these particular symptoms after orgasm.
Has anyone with HM experienced:
Muffled/hearing changes after orgasm?
Tingling or numbness in one hand after orgasm?
Migraine aura without the headache triggered by sex/orgasm?
Explosive headaches after orgasm?
Did you ever get an explanation or have testing done? I’m planning to talk to my neurologist, but hearing from people who have experienced something similar would really help my anxiety.

M35. About five years ago, I started experiencing something unusual. It began gradually, without any clear cause, with a strange sensation as if my brain was “shutting down” or trying to make me faint—although I never actually did.
This feeling came with strong discomfort that I can only describe as a kind of “brain nausea,” accompanied by physical nausea, chills or cold sweats, and an urgent need to use the bathroom (usually ending in a bowel movement). These episodes would last the entire day. Even trying to sleep was difficult, as the sensation would sometimes wake me up during the night.
Most of the times ending the following morning with a headache. That headache was always so good because it meant it finished.

At first, these episodes were relatively frequent, occurring over a period of about two months. Over time, they became rarer, eventually happening maybe once a year or even less.

It all started one night when I was extremely tired and couldn’t fall asleep. I became slightly panicked, and shortly after that, these sensations began. Sometimes it felt like something started in my head and then spread through my body, as if it needed to “exit” somehow.

I’ve had multiple medical checkups, but nothing abnormal was found.

Today it’s happening again, and it feels very disturbing and scary, which is why I’m asking if anyone has experienced something similar or has any idea what it might be.

​

43 year old female patient with progressive neurological symptoms since early March. Initially presented as right wrist and hand pain, an orthopedist ruled out Carpal Tunnel with a hand EMG/NCS and referred to physiatrist in the same practice as symptoms had progressed to right side C5-C6 radiculopathy. Cervical MRI without contrast was performed in April, showing reversal of lordosis, moderate foraminal stenosis at Right side C5-C6 and C6-C7 nerve root exit, central canal narrowing to 10mm, ventral cord defect without visible signal disruption, and near total disc desiccation/degeneration at C5-C7. Physiatrist recommended an epidural injection and dismissed questions about additional escalation of symptoms in the previous six weeks, so I sought second opinion from a neurosurgeon in May.

Symptom list at initial neurosurgeon appointment 5/21/2026 – radiculopathy progressed to bilateral paresthesia in all four limbs, urinary urgency, imbalance with tandem walk, 4/5 tricep and grip strength bilaterally, give away weakness in both arms and legs, loss of dexterity.

Neurosurgeon ordered a CT Myelogram, performed 6/8. Follow up appointment with Neurosurgeon on 6/21 resulted in a referral to Neurology due to progressive cervical myelopathy symptoms but no visible cord compression on any imaging. Between first appointment and Myelogram follow up, symptoms progressed to sensation loss in lower limbs, 3/5 tricep and grip strength, bilateral hyperreflexia in lower limbs, heaviness in torso, further loss of dexterity and hand function.

I am still awaiting consult with a Neurologist while symptoms are continuing to progress and function is continuing to decline. First neurology appointment scheduled for February 2027. Second referral scheduled October 9th.

Current symptoms include all from 6/21 as well as further loss of hand function and dexterity, further sensation loss in lower limbs, tripping/falling on level ground, dysphagia, facial numbness up to cheekbones on both sides, right sided numbness around back and crown of the head, and intermittent hemisensory loss on the right side. I now use adaptive utensils, a forearm crutch for walking, and can no longer sit upright at a desk while working (I have created a reclining setup in bed to adapt). Paresthesia, loss of dexterity and strength, and sensation loss are constant, but other symptoms are variable and cumulative in response to sustained activity level.

Referring neurosurgeon is unresponsive to patient messages asking for escalation of urgency with neurology referral but I am extremely concerned about waiting an additional 2 months with current rate of symptom progression and function loss.

Current medications - adzenys 15.7mg, bupropion 150mg, duloxetine 20mg, gabapentin 300mg x 3. Using CBD/CBG daily, which provides the most symptom relief but nothing really helps much.

This feels like a big deal. But doctors are acting like it's not a big deal. I don't know what to do or how to proceed when every professional I speak with agrees that my symptoms are problematic but then shrug and say they can't help me, send a referral to a different specialist, and then offers zero support for how to maintain any sort of quality of life while I am left in limbo and continuing to decline.

I am happy to provide any reports, notes, or imaging if it would be helpful. I have images from the myelogram but only the radiology report from the MRI.

What should I do here? Am I really just stuck here like this, getting worse, with no answers for months?

Had a mild concussion in late June. I'm prone to dizziness bc it's one of my pre-migraine symptoms. I rested a lot, and slowly it seemed to improve, though not completely resolve. I also spent a lot less time on my computer (which is frustrating bc I'm a writer). The dizziness has returned at almost the same post-concussion level. I've tried Dramamine in the past, which didn't help. This is the most stubborn migraine symptom because there's not much to do for dizzy. I've also had a doc try that head adjustment maneuver, which made things slightly worse. Suggestions?

Any recommendations appreciated. I need help. Last 16 months sleeping 0-3 broken sleep a night. No sleep drive at all. Cannot fall asleep for 1 second on own. Benzos only thing out of 30 drugs that can get me an hour but now they are useless. None of the z drugs or psych meds ever worked. Drs say I could have fatal insomnia. Petscan shows hypometabolism everywhere except the thalamus. Muscle spasms. Spinal tap showed elevated 14-3-3 protein levels. CBT-I did nothing. My heart rate is in 50-60’s its not anxiety related. The prior 12 months I had extremely high heart rate panic attacks; hospitalized many times with no answers. Been to various hospitals across country.

Any insight or suggestions on anything that could help is much appreciated.

heyyyy everyone. 😅🤪i’m a 28 year old woman, and i was recently diagnosed with epilepsy after 2 long years of seizure episodes and blackouts. it’s a long story why it took so long to get a diagnosis, but that’s besides the point. i’m writing because since finding out, i have been very sad. unwell:(  physically, mentally, emotionally.

 i’m soooo paranoid now that every little thing is going to cause me to have a seizure. especially because i don’t experience any auras or vibes before the seizure happens. i have not been able
to identify any triggers or anything; besides being hungover when i have an episode, or having one in my sleep.

i’ve had 2 EEGs, one a short one, one a week long one. the shorter one didn’t result in anything. lights or heavy breathing did not trigger a seizure. it didn’t for the week-long one anyone either. 

again, this has made me SOOOO uncomfortable and paranoid everytime i feel something weird or bad or anxiety inducing. i left the hospital on Friday, august 14th. and i feel like my life has changed for the worse. since the hospital visit, due to those seizures i had while checked in the hospital, my memory has gotten worse. not only that, but i struggle to find my words as well, and i have been soooo exhausted. 

i just wonder if anyone else lacks auras! or can and have been smoking marijuana with no problem. i’ve smoked often, but after the diagnosis i’m scared it’s a trigger. i’m not sure what to do. do you guys think i should cut down on/stop smoking? 

is it normal to not be affected by lights and heavy breathing during EEGs? despite being epileptic? 

any advice, words of wisdom and/or affirmation would be greatly appreciated. :)))) 

Hello everyone,
I’m curious to know if any of you experience a “Lhermitte’s sign” with FND.
An electric shock sensation/pain running along the spine that radiates into the legs (or not), occurring consistently and reproducibly every time the neck is bent forward?
Thank you for your responses.

30F 5'2" non smoker, Dx Ehlers Danlos / HSD, taking Clomipramine, Adderall, and bc pill

I have somehow, through overtensing my muscles, managed to do something to permanently numb both half of my right hand and halfway down my calf to my feet, causing foot drop. This was happening intermittently to my lower right leg (mostly from wearing sandals) but has now become permanent. In the beginning I was rolling my ankle constantly, but muscle memory seems to have allowed me to walk despite the drop. I know this is probably bad for my back because of the way I am replicating flexion of the ankle by lifting instead of striding. I am suspicious this all began when I tore my right rotator cuff a year ago. I currently do not have health insurance and am doing fine, but the only response from research I get is “go to the ER yesterday.” This has been the case for months now. Has anyone experienced this?

Hello, 23F. I’m writing because I’ve been having these ongoing flare ups for over three years and no specialist can seem to get to the bottom of it. I need the chronic illness community to help me point me and my doctors in the right direction.

My current medical history includes Endometriosis, Type One Diabetes, POTS, SVT, EPI, Gastroparesis, Narcolepsy, Sleep apnea, chronic fatigue, chronic migraines, suspected Sjogrens disease, connective tissue issues, hypotension, tachycardia, GERD, Fibromyalgia, Occipital neuralgia, Posterior tibial tendon dysfunction, pelvic dysfunction etc.

These flares first start around fall 2023, and I would have period where my cervical lymph nodes on both sides of my neck would swell. They didn’t cause any other symptoms for awhile, no pain or anything just inflamed nodes measuring up to 3cm at points showing hazy stranding indicating inflammation was present.

Fast forward a couple of months, these flares slowly started to come with more symptoms with the swolllen nodes.
Before a flare comes on, I typically notice a sore feeling in my throat (not sick sore, but like a muscle strain kind of sore), and my sweat/urine will smell slightly sweet.

Then that typically follows with severe inflammation, widespread body aches, drenching night sweats, fever, limited neck mobility, hip pain, chest pain, knee pain, constipation, shoulder pain, dizziness, debilitating fatigue, lack of appetite, nausea, sometimes a dry cough etc.

When these flares happen I have had imaging done, as well as labs. So far they have ruled out bartonella, toxoplasmosis, active EBV, all hepatitis related things, lupus, ANA was negative, spinal tap was normal, etc.

I have noticed possible triggers for these flares include, alcohol, immune support pills, mold exposure, excessive exercise or movement, stretching my neck, heat, lack of sleep, or after a sickness when my immune system is already weak.
I can’t pin it down to a single thing.

The next step is a biopsy w my ENT, but because the lymph nodes don’t stay swollen and are painful, she says it’s likely not lymphoma because it typically presents without pain and they don’t go away.

The only thing that somewhat helps during these flares is IV fluids, Torodol injection, medically administered fentanyl, or morphine. But even then, the medicine never really helps the neck pain.

Is there something my specialists could be missing? Has anyone else had these symptoms?
Could this be endometriosis effecting my lymph nodes?

I appreciate any help, at this point even if it is cancer I would just be happy and relieved to have an answer.

#endometriosis #typeonediabetes #flareups #autoimmune #lymphoma #lymphnodes #lymphaticsystem #chronicallyill #chronicillness #ent #rn #pac #moldtoxicity #heatintolerance #POTS #fibromyalgia

Hey, I could use some outside perspective because I'm stuck in an endless loop of overthinking and health anxiety.

I've had 4 convulsive episodes in my life (Nov 2018, March 2023, Jan 2024, July 2025). Every single one happened during a blood draw. Back then I used to just get vasovagal syncopes, but one day at 19 I completely seized up while feeling totally relaxed. Waking up was terrifying and super confusing (« Where am I? Who am I? Who are you (to the nurse)? »). The last time in July 2025, I bit the side of my tongue and felt like I'd hit the gym muscle-wise.

Recently, I realized that paired with my myoclonus (at rest in the evening and upon waking up), this could possibly be epilepsy. That realization sent me down a massive rabbit hole: I panicked, called the ambulance thinking I was about to seize, went to the ER for anxiety-induced vasovagal attacks, saw my GP who wrote a referral for a neurology EEG, and ended up back at the ER because I panicked and couldn't wait.

The ER docs told me it's 100% just severe vasovagal syncope because of the exact same trigger every time, and that an EEG is totally useless.

I asked some questions: they said I'm fine to drive, look at strobes videos, or go to theme parks.

Problem is, I'm convinced I described my symptoms poorly to them, and I mentioned my daily weed use (0.1g a night dry herb vape which I quit 2 days ago because myoclonus became scary for me, probably addin parano), so I feel like they dismissed it too fast.Now I dont have the referral letter anymore cause they kept it and I'm stuck looping between « I'm fine / stop worrying » and « I need to push for a neurologist », and I keep relying on AIs to answer endless questions.

Am I right to think there's really something to check here and keep pushing, or should I just take a deep breath and accept that I don't actually have a solid case for epilepsy?

Thank you for reading

Edit: forgot to add the myoclonus is sometimes only arms sometimes arms and legs, one time I recorded a video where I had 13 in 43 seconds, but could stop it by crushing a bank card in my hand.

Hi everyone,
I’m wondering if anyone here has experienced symptoms similar to mine, especially before developing any motor symptoms.
About five years ago, I started having problems with my sense of smell, blurred vision, and difficulty reading in low light. I also developed issues with the skin on my fingers, which started peeling and looked somewhat like dermatitis.
In January of this year, I developed severe constipation that hasn’t improved even with laxatives. I’m also experiencing drops in blood pressure when I stand up, a lot of sadness, and extremely vivid dreams — sometimes they feel so real that it’s almost like I’m living a parallel life while asleep.
More recently, I’ve also developed urinary incontinence and have been needing to use the bathroom approximately every 20 minutes.
I haven’t developed any motor symptoms such as tremor, rigidity, or slowness of movement, but I’m worried that these symptoms could potentially be related to Parkinson’s disease or another neurological condition.
I had anorectal manometry, which showed pelvic floor hypotonia. People have also been commenting that I look thinner, even though I haven’t been dieting or exercising.
More recently, I’ve noticed some difficulty forming certain basic sentences, which is also concerning me.
Has anyone here experienced a similar combination of symptoms before developing motor symptoms? Could these kinds of non-motor symptoms occur years before Parkinson’s becomes apparent?
I understand that these symptoms can have many different causes, and I’m not looking for a diagnosis — I’d just really appreciate hearing about other people’s experiences.
Thank you!

I (29F) have been doing the dance of seeking some sort of diagnosis for my myriad of chronic pain, fatigue, etc. physical issues that increased dramatically 1-2 years ago. Two different PCPs, 6-months of physical therapy, several rheumatology visits, multiple blood tests, ultrasounds of my joints, and X-rays of my knees layer, both rheumatology and primary care say there is “no indication of anything wrong with me”. According to my understanding of my blood results, my sed rate and CRP are elevated, but my rheumatologist insists it is “insignificant”.

So, I got back to my PCP, we go over everything again, and then just end up sort of staring at each other, as she and I both are like ??? My previous PCP suggested perhaps it’s fibro, but my current PCP isn’t so sure. My rheum refused to comment on fibro. So, current PCP asks me what I’d like to do next, and I honestly don’t know. I just keep googling about my symptoms, and sometimes I come up with diagnoses that seem to fall under neurology. The trouble is, my visits with the rheum have been so traumatic through their gaslighting of my experience that I hesitate to even ask my PCP to continue referring me to different specialties, just as it’s hard not to assume I’ll continue to hear the same things anyways.

Has anyone sought a neurologist’s (or speciality other than rheumatologist) opinion for fibro-like symptoms? Any ideas beyond this?

Any advice or insight is appreciated!

Is there anyone going through this that I can speak with?

I was referred to the ENT due to many issues including pulsatile tinnitus , sleep apnea along with many other things.

She sent me for a routine head MRI and it has come back with many signs of IIH
I got the report before the doctor called me so I spent the whole weekend with major anxiety - if you Google it, it doesn’t sound great.

She has assured me I’m safe and to carry on with my day to day routine. Has referred me back to the GP as it’s out of her area, I need to get my hormones checked and my eyes checked.
My problem is, I don’t have a regular GP I just see anyone who’s available as mine left. It’s 4 weeks if you want to see a GP or 2 weeks to see a physician associate. I’m giving my doctors 1 more chance and if they disappoint me again I will be changing doctors.

Just wondering if anyone has been through this as I’m quite worried :(

Hi I’m a 41 yo M. 5’11 225lbs.
Medication: Trazadone 150mgs at night sleep.

Symptoms that are constant:
\-Neck pain and muscle stiffness
\-Severe light sensitivity
\-My vision looks like mild TV static sort of translucent
\-Hyper sensitive nervous system (overly emotional, jump out of my skin at the smallest of sounds, panic attacks, sweaty palms and impending doom feeling.
\-Brain fog, terrible short-term memory
\-extremely sensitive to small amounts of coffee or nicotine

Symptoms that come and go:
\-Chest pain, my heart rumbles really hard sometimes, or it may just be really fast.
\-A feeling of disassociation
\-tingling in the back of the skull.
\-pressure in my skull.

Before all of this happened, I was very active. I worked out at least three times a week, lifting weights and ran on the treadmill three times a week.

About four months ago, a pain settled in the back of my neck, right below the base of my my skull. I noticed light sensitivity in the beginning and then over the course of another week. It got really bad and that’s when all of the symptoms came crashing down on me. I tried to manage at work for about six weeks and then I ended up quitting because I kept making so many mistakes and I couldn’t function. I’ve been to the ER six times I’ve been to my primary care twice. I’ve been to the urgent care twice. I have a neurology appointment the 19th. I recently saw an orthopedic they prescribed physical therapy. I’ve been doing that for about three weeks for my cervical neck area it has not helped. I’ve had CT scans of my head and neck. They were negative x-rays are negative. All bloodwork is negative. I was cleared from the ER for heart attack and stroke. EKG is normal insurance wouldn’t pay for the MRI. I had to do at least six weeks of physical therapy. Still waiting to finish.

Any help anyone can provide I would greatly greatly appreciate it. My quality of life is about zero. I have only left my house to make it to the grocery store in the past 2 1/2 months. I lay on the couch all day. I have to wear sunglasses inside of my house with the shade drawn.

I’m at my wits end.

Context: I have GAD and MDD. Anxiety had been particularly bad since April 2025 and depression since October 2025. Was improperly tapered off an SSRI I was taking (had been on it for 12 years, was told to taper off over the course of a week!) which sent me into a revolving door of psychiatric medications.

Shortly after an emotional "crash" (nonstop ugly crying and a feeling of derealization) in March, I began developing light sensitivity. At first this was triggered only by looking at screens or things that move rapidly. It was shortly after I increased the dose of the SSRI I was on at the time, Lexapro, so my psychiatrist said let's go back down and get you into see an ophthalmologist.

So I saw an ophthalmologist. Then another. Then another. Beyond checking my eyes for glaucoma and dry eye, none of them could give me an answer. I do not wear glasses and never needed them. Meanwhile, my eye strain was progressing, and it became difficult to drive without feeling some sort of pain. I invested in a heated eye mask and eye drops, but neither made much of a difference.

I switched to Trintellix. Started doing Spravato for MDD. They helped my cognitive symptoms of depression a tad but not much else. My vision really began to bother me; now my eyes are more or less hurting me all the time. My psychiatrist said serotonin can affect your vision so let's try to wean you off the Trintellix and use Rexulti as a bridge.

Results: not good. Not only are my eyes still hurting, but I occasionally have trouble seeing in the dark now. I also feel extremely sluggish, fatigued, and low; obviously could all be symptoms of depression, but I am just getting the feeling that something is "wrong." I don't know how else to describe it, but I'm suffering.

I have an awful time sleeping without trazodone and literally cannot nap. I got a sleep study done and aside from a REM latency of 11 minutes, nothing seemed out of the ordinary. I suspect this is also related to my depression.

The ONLY thing that brings any sort of relief is clonazepam, 0.5-1 mg. It temporarily takes the eye strain away. A neurologist I saw said this isn't very helpful because we don't know which aspects of the clonazepam (anti-anxiety, muscle relaxant, anti-convulsant) are working. I am acutely aware of the dangers of taking benzodiazepines for a prolonged period of time and I'm terrified that I'm going to get addicted, but my psychiatrist said if this is what's working for me then keep doing it as a bridge.

My problem is I don't know where this bridge is going. I've been in an IOP program for 5 weeks and they're all lovely people but I can't focus on the material or my peers very well because of my cognitive symptoms. I've had depression before but it did not feel like this. It just feels like something is wrong neurologically. I have a neuro-ophthalmologist appointment but that's not until October. Right now my symptoms are just feeding into my mental health in one big nasty loop.

Any suggestions, advice, or good vibes would be GREATLY appreciated...thank you.

P.S. had an MRI in June, it came back clean. I recently had a QEEG that will inform TMS treatment.

Well. Hope some peeps can help me.

Started January of 2026. Twitching in calf under skin and slight twitching in other places. and fatigue and brain fog. Went to Neuro. Did mri and eeg. All good. Twitching slowed down and maybe even went away for a while or I didn’t notice it. Now in August and the twitching under the skin of my right calf is a lot and the calf feels sore. Went to another Neuro. And did another exam and she doesn’t seem worried. But I’m now going for more mri and emg. But I am a mess. Feel it’s ALS. Any good words or facts from anyone would help. Thx.

She’s leaning towards a leak and want a brain mri w w/o contrast, possibly a lumbar puncture.
I filed a medical grievance with the hospital for the complete garbage treatment I got 7/30 for when this all started.

Question: does anyone get hits with overwhelming sudden bouts of exhaustion with no really reason?