r/askneurology

In 2020 I started having intermittent neurological issues. A flare up pattern that is seemingly triggered by getting sick or foods (histamines?). For years I feared Parkinson’s or ALS, or MS. Yet scans, tests etc all normal.

Fast forward to the last 2 years. I’ve had flares that get worse and longer each time. Before it was once every 2-3 years.. they typically lasted a month or two. Well this time I’m on 10 months of a “flare”, afraid that maybe now this is permanent.

Of course, all labs and tests seem normal outside of HS-CRP of 7.2 (about 7x normal), which is a general inflammation marker. Autoimmune labs all clear, bloodwork perfect, A1C in the 5’s… so not diabetic related.

I’m starting to lose faith I’ll heal. I’m in a vicious cycle. Doctors understandably always suspect anxiety, but it’s not (though these attacks DO generate anxiety afterwards). The symptoms are as follows:

Nerve pain that is often much worse at night. It can range from sharp pains, to numbness, to burning. It’s both sides of the body, upper and lower body. I also get HR spikes that feel like adrenaline surges randomly, but especially when standing up or eating. Luckily I’m on Metoprolol which seems to put a cap on it (before upping dose to 50 mg HR could go to 140-160 briefly, now it caps around 115-120).

Another odd thing I get is full body internal tremors. Normally that lasts a few minutes but last night it was 3-4 hours until I fell asleep. I have facial numbness sometimes, lots of headaches and fatigue. The worst symptom though is it’s nearly impossible for me to hit deep sleep. I only get 30-60 minutes deep sleep and it’s always at the beginning.

I believe due to the bad sleep and nerve stuff… I’m always sore. Full body soreness like I was in a car accident. It’s like my body can’t heal.

I’m willing to fight years if I have to, but I’m just scared if it continues down the progression path… I will end up dying from it somehow. When I plugged all symptoms into every AI they came up with two common answers.

• Post-viral dysautonomia / hyperadrenergic
• Long Covid with Small fiber neuropathy

I guess what I’m hoping to find here is people who have beaten this or have tips for me. Or which of these two conditions you guys have seen more commonly here. I would do anything for help.

On a usual day my HR resting is around 80 and without fail goes to 140 -160 upon standing, even when I’ve downed electrolytes, buckets of water and wear high waisted compression leggings & compression socks

I took a 2mg dose of psilocybin at 18:00 and according to my visible wrist band my HR was average 80-100 for around 15 hours, which included standing up dancing unaided which is unheard of in my current condition, also getting up and down a lot throughout the evening

Then average HR around 80-110 for the following 9 hours until 6pm

I also have functional left hemiparesis which practically disappeared for the first four hours. I usually can only walk with a mobility aid but I was able to move and dance without it inside the house for the first time in MONTHS. At around midnight my physical neurological symptoms started to come back.

I’m extremely interested in why this happened. I noticed it once before when I micro dosed but seeing as it’s happened twice now, I think it could prove quite interesting to understand the science behind it. I understand it can be a bit of a taboo topic so I apologise in advance if anyone is upset by this post but my intention is to explore this subject in a scientific and curious manor.

I made a comparison photo of my visible wrist band data but not sure how to upload it to here.

Thankyou in advance for your understanding

Hi there, new to this subreddit. I’ve had foot neuropathy (mostly in left foot but also at times in my right) for many years which I’m pretty sure is emanating from scoliosis and stenosis (I’ve had X-rays and MRIs but no dr. has ever been able to confirm exactly what’s causing it). I’ve been on 600 mg gabapentin for quite a while(prescribed in the U.S.) but I’m in Barcelona now and neurology Dr suggested that I up my gaba intake or try pregabalin, so I decided to try the latter, taking 50 mg morning and again at night.

I’m just wondering whether anyone else has tried both and if so what was your experience with them? Did you find one worked better than the other? Did you need to up the dosage before feeling any results?

I’m currently seeing an cardiologist and I’m waiting for my echo and heart monitor results, but I’m just wondering if anyone here is experiencing the same thing or know what It can be. I’m tired of going to the hospital and being told it’s just anxiety and that I have to see a cardiologist, ive been dealing with this for so long and no answers or help. Here’s what I’ve been experiencing:
\-Fast pounding heart beats upon standing, when awakening, after eating, or making sudden movements
\-Lightheaded upon standing, bending over or after squatting
\-Fast heart rate when walking around the house, or doing basic chores
\-Slow hard beats when startled, excited, or jump scared (Random drops in heart rate)
\-Sensation of blood rushing through my chest, up into my head when standing
\-Shortness of breath when doing anything physical
\-Tingly/hot feet when standing for long periods of time
\-Heart beats slow and fast after sitting down when having episodes of tachycardia
\-Fatigue
\-Extreme episodes of anxiety
\-Exercise intolerance
\-Depression
\-Stress
\-Sweaty hands and feet
\-Pains in chest,back, and neck that come n go
\-Feeling weak on some days
\-Recently started getting more skipped beats
\-Pressure in upper left abdomen when lifting

Hi, since March 16th I’ve been living in hell. Numerous trips to a&e, GP appointments and living through the worst thing ive ever experienced. At the end of March on my fourth trip to a&e the doctor there told me they suspected it’s a hemiplegic migraine.

I feel like I’m having a stroke every day almost. I’ve got permanent damage to my right eye. That hasn’t recovered, I wear glasses now. I didn’t before. I’ve lost myself, I barely recognise who I am anymore and I’m finding it incredibly hard mentally. Before this started I thought myself of quite intelligent (I’m a writer) and now I’ve become someone who can’t even comprehend creating something with my current brain.

It’s ruining my life. Work triggers is, walking triggers it, doing chores triggers it, going to the gym triggers it… basically being alive triggers it.

They’ve given me a neurology appointment… it’s August 25th. This has been happened every day since March 16th. So I don’t have a formal diagnosis and I’ve also had zero tests done. Not one. They just keep offering pain killers and sending me off back home even though my last attack occurred without a headache before, during or after and it was awful. I thought I was about to die. I could feel the artery or veins in my neck trying to escape out the side and my throat was so swollen I could barely swallow water.

I don’t know what to do, or how to manage this. I’ve tried desperately to get my neurology appointment brought forward but they’ve told me they can’t see me any sooner than that. I’m haemorrhaging money, I’ve got no life, I can’t work, my flats a disaster and my fitness has never been worse as I can barely get off the sofa without falling down due to the weakness in my right leg, loss of balance, dizziness etc..

So if anyone can give me some advice I’d really appreciate it as I’ve asked the hospital and my gp repeatedly for some kind of management plan or preventative medication but they’ve not offered me any help and I can’t get the preventative meds without formal diagnosis and that can’t happen until August 25th when I finally see a neurologist.

Thank you (a very scared and stressed woman who is at breaking point)

i've heard about and seen it help a lot of people with the pre and post-dromal migraine headaches and chronic headaches but, i've also read literature for and against it.

so i turn to reddit :)

has anyone gotten a daith piercing for the above-mentioned and what was your experience?

My first symptoms started 6 years ago. It started with these symptoms:

\- inner trembling in hands and wierd strong puls

\- crazy muscle twitching all over the body ( now it is just few per day)

\- tinitus,

\- full numbness in hand when I wake up

\- strong brain fog

I got all these symptoms in first 4 months and it was nighmare.

After 1 year I got new symptom: CONSTANT INTERNAL TREMORS, it started in both foots and over time it spread all over body but strongest in legs.

So for years now I have these symptoms every day:

\- constant internal tremors/vibrations full body

\- constant tingling feets( or I am just feeling internal vibrstions there)

\- muscle twitching, few daily so not crazy as when it started

\- tinitus

\- easily getting numbness in extremities after unpleasent position

\- severe brain fog, general anexity and social anxiety

\- chronic stress and rumination

\- low stamina and stiff calf after walking fast(but I am not phisically active)

Last 3 years only internal tremor is spreading, rest are the same.

So last year I had clean bloodwork, clean EMG, clean MRI of brain with contrast and clean full spine MRI..

So MS was ruled out, because after 5 years of all these crazy symptoms it must show something on MRI if it is MS, right?

Now I worrie that they maybe missed soomething, it was 1.5 tesla mri and it was just read from regular radiologist. Maybe I will send CD to some Ms specialist or to repeat tests again.

But still with all these symptoms they would esasily see something. For example for severe brain fog symptom they would see lession on the brain, right?

Not sure anymore

Hi, I am writing to try to explore treatment possibilities to discuss with the doctor of a close relative of mine who is evidently suffering from either an akinetic crisis or NMS.

Brief background— 68 m history of normal pressure hydrocephalus and possible Parkinson’s like syndrome but no clear Parkinson’s dx. Presented to ER with intractable hiccups per PC doc to rule out stroke or cardiac causes. Workup was ok. Given dose of metoclopromide to treat hiccups, which worked temporarily. Next day began experiencing severe weakness and collapsed at home several times. Returned to ER and found to have fever. Admitted with suspicion of sepsis and at some point given Thorazine.

Days 1-3 of hospital admit given high dose broad spectrum antibiotics and fever control. Fever oscillated up to 103 degrees. Patient became more rigid and unable to walk. Shunt tapped day 4 to assess for infection. Day 5 improvement and could stand and walk 10 feet with assistance.

Slowly began to lose the ability to walk, use arms or speak over the course of a few more days. Transfer scheduled to higher level hospital which took two days. At higher hospital full assessment took another couple of days. After CTs, MRI of brain and spine, EEG and PET scans, nothing remarkable (eeg showed “mild encephalopathy). Blood exams unremarkable. CSF and blood cultures with no growth and meningitis panel negative. Antibody (for autoimmune encephalitis) panel pending but PET didn’t indicate encephalitis.

At this point they believe it is Parkinsonism triggered by the acute illness at the beginning and the medication. They began dose of sinemet 25/100 three days ago with very mild improvement in alertness. Still trouble speaking but oriented x3. However dysphagia developed and the had to insert NG tube so missed day 4 of sinemet. Back on tomorrow with plan to transfer to skilled nursing in 2 days or so.

My question is: I feel like the therapeutic treatment he’s received has been feeble and I would like to know that treatment is working (confirming the suspected diagnosis) before transferring to SNF. Otherwise we still don’t know what the root cause is. What other treatments could be explored? Prior to the day he saw PC doc, he was living independently, walking with cane, climbing stairs, using phones and technology. Now physically can’t do anything. Docs have given us a hopeful prognosis but I fail to see what it is based on… please advise what I should discuss with them before we don’t have access to neurologists every day and he’s under the care of one medical director for the whole SNF.

Many thanks.

Hello all. I'm a 28F that has been dealing with migraine/cluster migraines since I was about 10. I take rizatriptan, and was on Aimovig but due to insurance issues I've had to wait for different authorizations.
I'm not sure if this some type of new side effect of migraines but I've never dealt with this before and feel like I'm going crazy.

My migraines have always been on the right side of my head (temple) and behind my right eye that is a strong throbbing/stabbing pain that is quite debilitating. Light sensitivity, noise sensitivity and nausea. I've never dealt a whole lot with strong aura, just maybe some blurry-ness in my right eye due to the pressure.

These past three weeks have been completely different. First off, I've had to take medicine almost every day until I get home from work (if I can wait) due to the triptans causing me to be a bit drowsy and I have to be absolutely focused with my job. Even more, I am constantly messing up at work and having to quickly fix it- even though it's a job I've done for years. Little things that I've never missed or forgotten before. Even my coworker has noticed, or when we're talking she will kind of laugh and ask me if I've gotten enough sleep because whatever I'm saying is not making sense. And I can feel myself struggling to try to compute what I want to say.

My sleeping has been way off. I clock in at work around 7am, and I get home at 4:30pm. Every day I've been struggling to just stay awake to make it through the day. I try not to go overboard on coffee- but even that isn't hitting. As soon as I get home I can barely change out of my work uniform before I'm already dozing off in bed. To then I will literally sleep until about 6:30am and have almost been late to work because I am sleeping so hard. And I am STILL exhausted and can barely function at work. When I am off, I am quite literally sleeping all. Day. Long. The only time I can stay awake is eating something, and then I am falling back asleep.

My dreams have been pretty bad as well. One in particular I've had something growing out of my face and I still can't get over it even though it's been days now lol. It makes me stomach turn just thinking about it 🤢

Along with that, I have been hearing and seeing things now. Not like voices or people. Shadows, light flashes, floaters etc. I can't really describe the sounds but almost like thumping or something knocking. Along with just feeling like I'm not really "here"- like some type of foggyness. I just feel so out of it and no matter what I do I can't get back to "normal". Even leaving work I made it to the car, opened the passenger door to sit my belongings in the seat and slammed my chin on top of my car door I was just so out of it going through the motions.

Yesterday morning I decided to finally go to the ER since in the middle of the night I woke up out of my sleep and I just couldn't take all of this PLUS the throbbing headache that's been there for 3+ days with no relief. I explained all of this to the doctor and nurse and told them yes I do have migraines- but this isn't my normal. As expected, I felt I wasn't taken very seriously. They gave me a shot of sumatriptan, fluids and lab testing but decided no imagining. Everything came back normal(thankfully), told me to take magnesium every night and I was sent home.

I have a good while before my next neurology appointment, however I am on the cancellation list if someone were to cancel. I just need to vent and ask has anyone dealt with this before?? I feel like I am losing my mind but just too tired to care. I feel like I can't even enjoy my hobbies like I used to because I just can't even focus, use my hands right or just so exhausted to even start.

Hello!

I'll write this as succient as possible. NOT looking for diagnosis, only advice on next step!

My symptoms started 3 years ago.

First, knee pain flare ups- which then started in both knees, and both arms. Dull aching in my arms, and bone on bone feeling in my knees.

At the same time- I started falling a LOT- falling down my steps 3 times in 3 weeks, dropping everything. My grip strength was noticeably getting weaker. My legs would give out from weakness.

Then the numbness started- in my arms, in my legs, even exactly half my face went numb at one point. Sometimes a body part would go numb for a moment, or have pins and needles, other times it would be almost 10 minutes.

I started spelling things weird- which was extremely noticeable because I've always been an excellent writer. I'm getting tremors,

First two doctors say it's neurological- I get an mri.

"Scattered tiny foci of T2 hyperintensity in the subcortical white matter predominantly in frontal lobe- approximately 20-25 lesions"

8 different doctors and nurses have all said this is neurological, and could likely be MS.

1 year later, I get sent to an MS specialist. He didn't let me explain any of my symptoms, orders another MRI.

My symptoms have progressed a lot- extreme weakness to the point of limbs giving out. Numbness, headaches, falling and getting hurt a lot. The list has grown significantly. My arm went numb and gave out while I was holding something,I dropped it on my leg and was seriously bruised.

My optometrist has suspicions of MS as well, and has asked me to keep track of my eye symptoms and he might refer me to someone too. (Nystagmus)

MRI is stable from previous. "This is not MS. End of story". No suggestions or referral to a regular neurologist. I asked about the weakness and he said "you have weakness??" He didn't listen AT all.

I've since visited a rheuomatologist to see if it's auto immune (only abnormal blood test was ANA titre 1:160)and she said it's not auto immune.

I am NOT looking for a diagnosis-

I just want to know if my symptoms "seem" neurological, and if I am silly for wanting to pursue a neurologist to give a second opinion.

I'm either told it's likely neurological, or else they tell me it's stress and anxiety. I'm so exhausted.

I am debilitated by whatever is going on, and just desperate for some advice on what to do. Please, ANY advice welcome ♡

So- is a different neurologist a reasonable next step?

Thank you for reading!!

Since August 2024, after an Upper respiratory infection I continued to clear my throat because it felt as if mucus was in my throat. I soon realized it became chronic and sensations began a few months later of a dangling sensitive feeling in the back of my throat. It felt like slight mucus was in my throat tickling me and making me clear my throat or cough. When I go to bed, I can sleep fine. No issues. My only symptoms here in May 2026 is throat clearing due to tickly mucusy sensations & recently now it feels like there a hair in my mouth but there’s nothing there.

All test came back normal (CT, MRI, Laryngoscope, etc) It’s nerves that are hypersensitive, specifically my Laryngeal or Vagus.

The doctor prescribed me 10mg Nortriptyline. I’m scared to take medicines but I’m desperate to get this hypersensitivity to stop so I can rebuild my confidence to go into public gatherings and enjoy myself again.
Is Nortriptyline a good medicine to eliminate this hypersensitivity? Anyone experience this o use low dose Nortriptyline for something like this? If so, did it work, what were the side effects and how tolerant is this drug?

I have had an insanely hard time getting into a neurologist following the incident a few times ago and have some questions that my neurosurgeon seems iffy on answering. In February I Presented with a right temporal intraparenchymal hematoma and was found to have a brain arteriovenous malformation (they call it an intracerebral hemorrhage too? Not sure the difference) Anyway I had a platinum coil embolization in late March and have a follow up angiogram to see if it was successful. I didn’t have any neurological deficits besides horrible headaches that have since gone away. I am optimistic and very hopeful I don’t have to get the vessel removed and that everything is resolved. But as a 20 year old in college I have a lot of questions regarding continuing my social life. I have honestly had an incredibly hard time changing my routine and social life because of this event. I haven’t drank since it happened because I was told it would give me a seizure. But I want to know when I will be able to drink again especially considering my 21st birthday is in June. The neurosurgeon gave me the okay to take edibles but will I be able to smoke marijuana and tobacco again soon? And I have experimented with drugs in the past and want to know if that is something that is off limits for the rest of my life. Honestly insanely tired of being the sober one at the bar or party and want to drink but am very scared of seizures or messing anything up. I obviously know that no one is gonna advise me to drink but I would love to know the realistic risks.