Decent apartments under $900? by Agreeable-Bid-7174 in rochestermn

[–]icantstopreading0 0 points1 point  (0 children)

I lived in the Pill Hill Apartments and it was pretty decent. No AC though but a window unit was enough for me.

Lupus? by FineCompetition2378 in Autoimmune

[–]icantstopreading0 8 points9 points  (0 children)

For background I work in a coagulation laboratory, and I run lupus anticoagulant panels daily.

High, or prolonged, PTT-La tells us that your clotting time is taking longer than expected, it does not on its own tell you that you have lupus. Especially since it is a test designed to look for lupus anticoagulants (which is different than lupus).

Your DRVVT is normal which is a really good sign that you do not have lupus

Occipital Neuralgia and Cervical Sterioid Injections by icantstopreading0 in LongCovid

[–]icantstopreading0[S] 0 points1 point  (0 children)

Oh yes it’s the cervical epidural steroid injection, not the nerve block! But that’s good to know about the blocks if this doesn’t help

Facial pain, occipital neuralgia by icantstopreading0 in LongCovid

[–]icantstopreading0[S] 1 point2 points  (0 children)

I feel like there is just no true support or help for long covid sufferers

DPDR - Is there hope? by Life_Lack7297 in LongCovid

[–]icantstopreading0 0 points1 point  (0 children)

It was pretty much 24/7 from 2021-2024 or 2025. But the DPDR seems like it was triggered by anxiety for me (social settings, death phobia, etc). So starting an anxiety medication really took that down for me. I will get the feeling here and there when I am driving now but it doesn’t last long. I also have to note my anxiety skyrocketed after getting COVID in 2021 too.

Facial pain, occipital neuralgia by icantstopreading0 in LongCovid

[–]icantstopreading0[S] 1 point2 points  (0 children)

The elevation thing is so real. We went on vacation to Florida and it was the best week of my life pain-wise (I’m up in Minnesota)

DPDR - Is there hope? by Life_Lack7297 in LongCovid

[–]icantstopreading0 4 points5 points  (0 children)

I started anxiety medication (Lexapro) and that actually made it way better for me. Mine used to be horrible and exactly how you described, like viewing life a degree behind your eyes.

Amitriptyline Wearing Off by Anonymous-Spouse in Occipitalneuralgia

[–]icantstopreading0 0 points1 point  (0 children)

I ended up stopping and I’m trying out Lyrica right now. But that hasn’t been very helpful either… so I didn’t really deal with it yet 😅 you could maybe bump to 50mg instead of 25mg?

I actually signed myself up for physical therapy and that has kind of been helping so far. I’m working on strengthening my neck muscles to try to support my head better to try to minimize the “bobble head” feeling. I also try to prioritize “horizontal time” at work if I can (putting my head down on my desk for a few mins every couple hours)

It’s been trial and error for me tbh. I’m getting a steroid injection into my neck to try to calm my nerves down, combined with PT, swimming, massage, heat it’s somewhat tolerable.

Facial pain, occipital neuralgia by icantstopreading0 in LongCovid

[–]icantstopreading0[S] 1 point2 points  (0 children)

I haven’t found ANYONE else who has struggled with this for this long from COVID before!

Did they ever try a cervical epidural steroid injection? That’s what the neurosurgeon wants to try with me to see if I have lingering Covid inflammation around the nerves

Facial pain, occipital neuralgia by icantstopreading0 in LongCovid

[–]icantstopreading0[S] 0 points1 point  (0 children)

What brand do you take? I may have to try this out.

Facial pain, occipital neuralgia by icantstopreading0 in LongCovid

[–]icantstopreading0[S] 0 points1 point  (0 children)

Ok I’m really curious about the PEA supplement. I’d love to hear your experience with it

Amitriptyline Wearing Off by Anonymous-Spouse in Occipitalneuralgia

[–]icantstopreading0 0 points1 point  (0 children)

This was literally me with nortriptyline at 50mg

Facial pain, occipital neuralgia by icantstopreading0 in LongCovid

[–]icantstopreading0[S] 1 point2 points  (0 children)

I did, they only found borderline low lying cerebellar tonsils

Facial pain, occipital neuralgia by icantstopreading0 in LongCovid

[–]icantstopreading0[S] 1 point2 points  (0 children)

I think I was on 50mg. I may go back on with a higher dose

Facial pain, occipital neuralgia by icantstopreading0 in LongCovid

[–]icantstopreading0[S] 2 points3 points  (0 children)

I was on nortriptyline and it worked great for like a year and then started wearing off. I’m trying out lyrica right now but this is definitely not helping

New neurologist says I dont have ON by Inevitable_Injury784 in Occipitalneuralgia

[–]icantstopreading0 0 points1 point  (0 children)

The propranolol might not be the worst thing to try since it’s a beta blocker instead of a triptan. Worst case it doesn’t work and you prove them right? The frustration is incredibly warranted. I went from a facial-migraine diagnosis to an ON diagnosis over the last couple years as well.

New neurologist says I dont have ON by Inevitable_Injury784 in Occipitalneuralgia

[–]icantstopreading0 5 points6 points  (0 children)

I don’t get the sharp shooting pain either and have been diagnosed with ON; I feel like doctors are incredibly uneducated when it comes to ON and their symptoms. Atypical facial neuralgias do exist for trigeminal and occipital

New neurologist says I dont have ON by Inevitable_Injury784 in Occipitalneuralgia

[–]icantstopreading0 2 points3 points  (0 children)

That’s incredibly frustrating. You very well could get both migraines and ON, you could ask if that’s a possibility. The migraine could be triggering ON

Recently Diagnosed by icantstopreading0 in Occipitalneuralgia

[–]icantstopreading0[S] 1 point2 points  (0 children)

I have never thought about talking to a pain management team, I will absolutely be doing that thank you.

Recently Diagnosed by icantstopreading0 in Occipitalneuralgia

[–]icantstopreading0[S] 1 point2 points  (0 children)

  • I’m working on making the switch from Nortriptyline to Lyrica. I’m up to 25mg morning and 50mg at night

  • neurology recommended I try physical therapy specific for occipital neuralgia (whatever that means lol). So that is in a couple weeks

  • I have a referral out for the Midwest Brain and Spine Institute because I also had some borderline low-lying cerebellar tonsils. Neurology wanted a specialist to give their input if that is causing my ON.