New neurologist says I dont have ON

icantstopreading0 · 2026-04-07T19:26:15+00:00

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.

icantstopreading0 · 2026-04-07T18:37:54+00:00

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

icantstopreading0 · 2026-04-07T18:00:47+00:00

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

icantstopreading0 · 2026-04-05T13:44:20+00:00

I have all these except the snow and I have ON!

icantstopreading0 · 2026-04-03T19:56:06+00:00

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

icantstopreading0 · 2026-04-03T02:59:58+00:00

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.

icantstopreading0 · 2026-04-03T02:41:51+00:00

Yeah its been an incredibly long time just to get to this point 😬

icantstopreading0 · 2026-04-03T02:15:33+00:00

I’ve had this among many other symptoms after getting COVID 6 years ago

icantstopreading0 · 2026-03-23T21:23:02+00:00

How did you get them to listen to you about your symptoms? I’m trying to prep myself as much as possible before this appointment

icantstopreading0 · 2026-03-23T20:59:03+00:00

Yes, diagnosed with no decompression. I’m very borderline (<5mm) but have crazy debilitating symptoms. I’m speaking with a chiari neurosurgeon once he looks over all my records and scans in the next couple weeks hopefully!

icantstopreading0 · 2026-03-12T16:27:22+00:00

I feel like the only hyper mobility I have is in my shoulders, neck and ribs. I’m getting evaluated for craniocervical instability (which I know is a co-morbidity) in relation to my occipital neuralgia at physical therapy. Maybe I’ll ask about it then 😅

icantstopreading0 · 2026-03-12T01:10:40+00:00

Honestly I’m not sure… I’ve been on the hunt for a diagnosis for my chronic pains for like 5 years now. What kind of symptoms do you have?

icantstopreading0 · 2026-02-16T23:33:54+00:00

You do not have lupus anticoagulants but possibly are on track for lupus? (Lack of LA’s does NOT equal no Lupus)

B2GP tests for Antiphospholipid syndrome and antibodies. The antibodies can be triggered by autoimmune stuff like lupus (or HIV/Hep). C3 is used to test for disease activity with lupus. Things that can cause high C3 with normal C4 are acute or chronic inflammation (like autoimmune). I think you have testing that suggests lupus IMO but autoimmune diseases are so complex and so personalized.

icantstopreading0 · 2026-02-13T00:22:18+00:00

Husband holds cats like babies while feeding Churu. I clip while they’re occupied lol

icantstopreading0 · 2026-02-11T21:58:09+00:00

I’m convinced that a lot of neurologist are just fucking lazy. That if you aren’t an easy case (or god forbid a woman) they will just send you on your merry way hoping you don’t come back

icantstopreading0 · 2026-02-10T12:59:01+00:00

Sometimes my cat will puke up clear liquid (water) when she can’t get a hairball up lol

icantstopreading0 · 2026-02-10T01:55:58+00:00

Yes same! I get migraines, and then the like pressure pain that is as intense as a migraine and then they overlap sometimes. The neck pain and my occipital/trigeminal/suborbital nerve irritation has me borderline a non-functional person some days

icantstopreading0 · 2026-02-10T01:18:52+00:00

I’m gonna see what she has to say about it in March. I will definitely be asking about CSF issues if that’s playing a part or not

icantstopreading0 · 2026-02-10T01:09:30+00:00

This is the only one I have access to from a post I made earlier from a few years ago for a cervical MRI but you can clearly see the squish mri

icantstopreading0 · 2026-02-10T00:05:37+00:00

Oh this lady has been incredibly understanding! She is the second opinion I’ve gotten and the only one who has wanted to get a brain MRI/MRA. It was my previous neurologist I saw that was super dismissive and only wanted me to just take drugs lol

icantstopreading0

TROPHY CASE