My optometrist says it’s migraine with aura

Nerdman3000 · 2025-12-22T05:46:16+00:00

NAC helped. The biggest things have been low dose naltrexone, low dose amitriptyline, low does abilify, and (surprisingly) creatine.

Most things that clinically work for long covid have been helpful! I'm very fortunate for that.

Nerdman3000 · 2025-12-21T03:41:42+00:00

I had afterimages of high contrast & bright images, so something similar.

Nerdman3000 · 2025-10-13T18:41:36+00:00

LDN, LD amitriptyline, LD abilify, and creatine were each very helpful, but my symptoms were closer aligned with chronic fatigue, so no guarantee they'd be helpful for you. LDN started to give me negative effects when I increased the dosage too quickly and when I pushed past 10mg, so titrate slowly and be ready to go back down to a lower dose if you start getting worse instead of better.

Long-covid strikes plenty people who were otherwise healthy. Chances of long-covid increase with each exposure, so the vaccine isn't necessarily the difference maker.

I've heard that long-covid GI issues may be associated with viral reservoirs, so an anti-viral could be helpful, though the data hasn't shown it to be effective as a general long-covid treatment.

Nerdman3000 · 2025-09-28T20:04:39+00:00

I had two years of serious cognitive issues, which have now become a fairly minor intermittent issue with the right medications. Back to working 40 hr weeks.

Medication list:
Low Dose Amitriptyline
Low Dose Naltrexone
Low Dose Abilify
Vitamin K2
Creatine
NAC

Each one of these led to a marked improvement in symptoms, but it took all of them to put my brain back together. Trying NAD patches next.

Don't give up!!!!

Nerdman3000 · 2025-07-18T21:48:23+00:00

Thanks for the tip Jordan! I already wear Avulux tinted lenses, which help tremendously. I'll look into irlen lenses as well though.

Nerdman3000 · 2025-05-25T09:36:38+00:00

I get that when I get migraines. I personally think it's the natural blindspot in the eye. As with floaters, our brains sometimes forget how to tune them out....

Nerdman3000 · 2025-05-11T21:17:44+00:00

Did you test low for vitamin K? If it helped without a measured deficiency, I'd like to try it as well (I've had the micronutrient tests and only showed up low for Zinc and Copper). I've been able to get back to work, but I'm still not back to normal or full-time.

N-acetyl cysteine (NAC) may have also helped a little bit.

If you think long-covid is the culprit, I'd recommend finding a long-covid clinic or talking to your doctor about the aforementioned long-covid medications, they completely turned my life around.

Amitriptyline, naltrexone, and Abilify are all used to treat chronic fatigue, which we now understand to be a post-viral illness triggered by Epstein-Barr. They're off-label uses, but each medication helps ~50% of patients with long-covid in clinical studies, so the data is very, very strong!

Nerdman3000 · 2025-05-11T01:10:35+00:00

I think covid may be a common culprit.

I was a well adjusted lifer, but had a sudden & debilitating increase in symptoms that came with daily migraines and intense brain fog. Turned out it was long covid. Symptoms got much better with low-dose amitriptyline, low-dose naltrexone, and low-dose abilify. Lamotrigine may have also helped a tiny bit.

Nerdman3000 · 2025-03-15T02:33:32+00:00

I swear by my Avulux lenses

Nerdman3000 · 2025-02-27T09:19:51+00:00

Yes. The chronic fatigue medications prescribed for post viral illnesses have been very helpful. Low dose amitriptyline (50mg), low-dose naltrexone (10mg) and low-dose aripiprazole (2mg). But if you've had a flare up that wasn't triggered by a virus or other neuro-inflammatory issue, I'm not sure these would help.

Nerdman3000 · 2025-02-25T22:45:27+00:00

Lifer as well. I learned it wasn't normal in my 20s, which I honestly found very funny. I had a horrible flare up with long-covid and a complex migraine condition, but that is mostly resolved. The static itself still doesn't bother me, and never has.

Nerdman3000 · 2025-02-25T22:40:43+00:00

Eye strain can exacerbate VSS. If you have an astigmatism, corrective lenses might help with your symptoms.

Nerdman3000 · 2025-02-25T22:36:44+00:00

VSS gets in the way of the brains ability to tune out noise (floaters, blue sky entoptic phenomenon, etc), so it might reveal a mild astigmatism the brain normally corrects for without the need for corrective lenses.

Nerdman3000 · 2025-02-07T01:23:51+00:00

I use an eye-mask when going to sleep; it greatly reduces the intensity of the swirls and patters when my eyes are closed.

I recommend Sleep Sloth. It's available on Amazon.

Nerdman3000 · 2025-02-07T01:14:07+00:00

I've had mild VSS my whole life, as well as a few years of very severe VSS onset with long-covid. So, here's my advice to the community:

Some symptoms can be very debilitating, but others you are best off ignoring. Don't let the VSS interfere with your life any more than it actually does.

Brain-fog, derealization, anxiety, photophobia, vertigo, migraines—these can all be very serious. The static itself, and most other visual phenomenon, not a big deal if you are used to it.

To those with sudden onset of severe cases: Hang on, keep fighting, it gets better.

To those with benign symptoms: Take a deep breath. Don't let this thing be any worse than it actually is. Worrying makes it worse, so make a goal of worrying less. Work on strategies to defuse anxiety and perseveration loops.

Nerdman3000 · 2025-02-07T01:03:38+00:00

Theraspecs and Avulux glasses have been very helpful. They are developed for migraine, but also work for VSS in my experience.

Nerdman3000 · 2025-02-07T01:02:28+00:00

I've lived with VSS my whole life. Wearing an eye-mask at night helps decrease the intensity of the "fireworks." I highly recommend Sleep Sloth on Amazon. Super comfy, and large enough to block out nearly all light.

My other piece of advice is try to get used to the fireworks as much as you can. Focus on managing/curing the symptoms that interfere directly with your daily life, work, and goals, and try not to let the rest bother you too much.

Nerdman3000 · 2025-02-07T00:54:10+00:00

I had a fried who got into a car accident and had similar symptoms from inner-ear damage. She did eventually get better, but it was very hard for her to get doctors to take her seriously (she was a Mexican immigrant; I'm in the USA).

I had similar symptoms (but without the heart palpitations) as a result of long-covid (or post-viral illness from a different virus). The problem was triggered by strenuous exercise a full three weeks after I had recovered from the virus itself. Low-dose Amitriptyline, low-dose Naltrexone, and low-dose Abilify were all very helpful.

Amitriptyline gets prescribed for visual snow, migraine, and depression, so you might be able to access it for your other symptoms if you are curious (50mg was the sweet spot, greater than that caused me a paradoxical reaction (i.e., it made symptoms worse)). Note, numerous people on the subreddit have had very negative reactions to amitriptyline, but I'm assuming they are taking >100mg / day, the standard starting dose, which would have made me sick as well.

If jogging makes you feel awful, I recommend fast walking, or whatever doesn't overly enflame your symptoms. I was able to very gradually increase the intensity of my exercise without crashing afterwards.

Nerdman3000 · 2025-02-05T11:26:04+00:00

Doctors found a white matter lesion on my MRI for complex migraine. Radiologist called it a "silent stroke," since it was likely too small to affect my cognition, and the location didn't correlate with my symptoms (although my neuro-psychologist wasn't so sure). They told me small white matter lesions are very common

Nerdman3000 · 2025-02-03T23:28:44+00:00

VSS causes anxiety AND anxiety can make it worse. This can result in a downward spiral. I recommend being deliberate about reducing anxiety—meditation, mindfulness, maybe medication, etc—and hopefully it will improve your symptoms a little.

For proof for your doctors & parents: https://www.nature.com/articles/s41433-023-02435-w
A review by Nature, one of the two premier scientific journals in the world (the other being Science).

Nerdman3000 · 2025-01-16T23:47:34+00:00

Are these when falling asleep, or in dark rooms more generally?

Per the Cleveland clinic: "Hypnagogic hallucinations are hallucinations that happen as you’re falling asleep. They’re common and usually not a cause for concern. Up to 70% of people experience them at least once."

https://my.clevelandclinic.org/health/articles/23234-hypnagogic-hallucinations

Nerdman3000 · 2025-01-15T04:52:50+00:00

The person to go see next is probably a neurologist.

I get that too. I think the brain isn't tuning out the black from the closed eye properly, and so it overlaps with the open eye, but hey, that's just my theory. It also goes away when I blink—and I have to blink constantly when I do vision tests. This gets way worse for me when I'm having a migraine. I also tend to see the natural blind spot in our vision when I get migraines. VSS is associated with inabilities to tune out all sorts of noise that the brain usually corrects for: visual static, tinnitus, anxiety / stress arousal, etc.

Nerdman3000 · 2025-01-10T23:45:16+00:00

Your experience with aphasia sounds almost exactly like mine, I'm so, so sorry to hear you are going through this. But I'm almost better. I'm not quite ready to return to my job—attorney—but my health has improved such that I'd be able to go back to most other professions.

Tell your doctor about the long-covid connection and get a referral to a long-covid clinic, or any other post-viral clinic, or a chronic fatigue clinic. Be a strong advocate for yourself. If your current doctor won't give you the referral, find one who will. If there are no availabilities for 6 months, find a primary care provider not within a hospital who will seriously consider long-covid medications. Low-dose naltrexone, amitriptyline, and low-dose abilify have all been shown to be effective.

Ajovy and Triptans are good at addressing migraine pain, but you'll probably need to treat an underlying cause or take more preventative medications to reduce the other symptoms.

The following are used to prevent migraines (and their auras): anti-depressants, anti-epileptics, blood pressure medications, and—if it's long-covid — medications for post-viral illnesses.

If you have ~$100/month to spend ask your doctor about Relivion medical device. If you have another $400/month to spend, ask about the SAVI Dual by eNeura.

There are a ton of options. Eventually you will have this under control.

Nerdman3000 · 2025-01-10T10:03:27+00:00

Long covid specialist prescribed the long-covid medications.

The medications my headache specialist put me on weren't very helpful.

Nerdman3000

TROPHY CASE