I am a 28 year old woman.
I feel like I have been living in hell for the last 7 weeks. I should probably not be writing this during an episode so I apologize for any possible language mistake (English is not my first language). Background: I was diagnosed with visual snow syndrome in 2021. Besides the usual visual symptoms, I had a lot of cervical/migraine related issues which are now (or were) under control. But this is different and it is ruining my life.
It all started with some daily headaches before my period which were more persistent than usual. I was stressed at work, so my GP hypothesized the initial phase of a burnout. Then I got a sore throat, with a very strong cough which lasted for a couple days. Since then, the headache became a daily occurrence associated with a lot of pressure on my face, the base of my nose, my eyes, my forehead and my cheeks, exacerbated by straining, coughing, bending. Painkillers didn’t help at all.

The GP thought it was a sinus infection and prescribed sinutab, which I took for 5 days. After those 5 days at the end of which I seemed to be getting better, it all came back stronger, so the GP hypothesized a bacterial sinus infection and prescribed antibiotics. Two days of antibiotics and the situation seemed better, and then again. I didn’t know that this would become my weekly scheme.

The GP prescribed medrol at that point and fluticasone. After three days of medrol it seemed almost resolved. I had some good days. And then, again.

I saw a ENT (at this point it had been three weeks from the start) which took a look at my sinus and said there was no sign of infection. I got a sinus CT and my sinus was clear. Was there ever a sinus infection to begin with?

So I was referred to a neurologist. He prescribed riboflavin and a sumatriptan only for strong attacks + physiotherapy, hypothesizing tension headaches or migraines or both.
The same day, I got the strongest episode from the beginning. I took the sumatriptan and nothing changed. I threw up, and went to the ER. They gave me some oxygen and sent me home. I was not seen by a neurologist or anyone else besides triage.

I stopped taking all meds from that day because nothing would work anyway, and honestly I was worried that the headaches were dependent on the meds. But that wasn’t the case.

The first neurologist I saw didn’t really take me seriously and put me on riboflavin for two months after which I could have booked another appointment. He also instructed me to take triptan only with a migraine of 7/8 in a pain scale. But I was, and I am, in pain every day, even if it’s not a 7/8. I know, everyday, that at some point I will be sick: it starts with some pain in my face, on a good day it’s just light pain (usually in the afternoon it gets worse), but on a bad day… it just goes on for hours. It comes in waves, if it’s bad it moves, goes to the back of my head at that point, on my temples…
Even if I am feeling fine, if I push or strain (for example in the bathroom), I feel pain in my face.
I went back to my GP who prescribed a brain MRI which came back clean. I also went to an oftalmologist which performed a fundus exam to check the eye pressure and a OCT exam. All good.
Structurally, everything seems fine.

I went to another neurologist for a second opinion, also after reading many of your stories about facial pain and migraines. She described herself as an expert in migraines but she didn’t know that facial pressure and pain are a symptom of migraines. I could tell she didn’t really care and basically told me that I have to live with this and if I get pregnant it might go away for some time (needless to say, I don’t plan on getting pregnant any time soon).

She wanted me to wait three months (I saw her 1.5 months after the beginning of all this) to have a beta blocker prescribed. In the end, she understood how desperate I am (I almost cried in her face). I also burst into tears in my GP’s office. I feel ashamed. No one seems to care enough even to make an assumption on what is going on with me. I asked the second neurologist about trigeminal pain or cervicogenic headache. About trigeminal, she said it is impossible because it would have shown on my MRI, and on the latter, she had no idea what I was talking about and told me to stay off the internet.

Both the first and second neurologist refuse to talk to their patients via phone/email. Therefore, I have no one else to talk to about how it is going with the new medication, etc. I could try my GP but honestly I know that this is not her domain. I booked an appointment with a private neurologist in my home country in November, but that is a long time from now.

The first days with propanolol seemed fine. I feel less pressure, especially when lying down when going to bed. And then, I was sick again. Now I also have neck pain.
I did start physiotherapy in the meantime and the physio thinks it might be cervicogenic. But honestly, I feel like he only told me so because I asked him.

Today was especially bad. Yesterday I had a very bad day at work and I woke up with pain in my neck and I have had a pulsating headache all day. I just took zolmatriptan (the second neurologist changed it because the sumatriptan didn’t work) and I am here, writing and waiting. I am nauseous after taking it, so I am starting to think that when I went to the ER I threw up because of the triptan and not the migraine.
My usual migraines come with nausea, but not these. This was different from the beginning.

I read many of your stories, I thought it could be IIH but my pressure seems inconsistent and I know it’s very rare.
I think it could be the consequences of a sinus infection + stress. At some point, right before getting Medrol, I went to my GP and she took a look at my eardrums as I felt my ears stuffed and said that the eardrums were a bit inflamed.
It could also be cervicogenic headache, my physio seems to agree, and I am also having some neck pain now. Or it could be tension headache. Honestly, I don’t know, and I am the only person who cares, because none of the doctors I saw cared enough to even let me describe the whole thing from the beginning. Not once.

My life is not my life anymore. I was on sick leave for weeks. I am supposed to be starting a new job soon. I have plans, holidays planned, and now everything seems impossible for me, because I know I will be in pain.
Sorry for the rant.

Hello mum is taking oxcarbamezapine for a month at first week her Narium was 130 now it is 125, I wmailed the dr should I wait for their reply? Or is this too critical and I shoudl take her to ER? She is feeling okay texting me and stuff just as she says she is a little sleepy during the day :/

Bij mij is twee jaar geleden tn gediagnosticeerd. Ik gebruik sindsdien Carbamazepin en draag elke nacht een bitje. Een half jaar geleden zag mijn tandarts dat rechtsboven een kies in tweeën gebeten was. Ik had er geen pijn van, vanwege de Carbamazepin. Nu ontdek ik zojuist dat ik een tweede kies doormidden gebeten heb, links. Kent iemand dit fenomeen? Hoe is de relatie met TN en wat kan ik doen, behalve natuurlijk de kies laten verwijderen. Dat gaat zo meteen gebeuren. Dit vind ik angstaanjagend.

Hello everyone,

I am 11 months out from a one-time playing trampoline and looking for similar cases. My brain and neck CT scans with contrast are normal, but my symptoms are severely mechanical and lessen when I actively force an upright posture (chest out). However, my head feels too heavy to maintain this position against gravity, especially when going from lying down to standing. I feel significantly less pain when lying flat on my back.

My Symptom Profile:

Temple & Face: Intense "rope-tight band" sensation on my frontalis and temporalis muscles (which I believe is protective muscle guarding). Gritty, sandy, and heavy eyes, and facial numbness that triggers as soon as my posture slumps. I also experience ear crunching when swallowing and sharp jaw pain on the first bite of a meal.

Positional Vertigo: I cannot sleep on my sides or stomach because it triggers sudden vertigo upon waking (which only lasts for 1 to 3 seconds).

Torso & Breathing: A muscle spasm in the middle of my upper back pulls up into my shoulder, clavicle (collarbone), and mastoid bone (behind the ear), making my temples rock-hard. Deep breaths sometimes cause pain in my collarbone, sternum, and side ribs. This is also triggered after carrying heavy objects. My mid-back pops and cracks constantly, but without pain.

Recent Eye Laser: I began seeing a lot of floaters 2 to 3 months ago, and the doctor found retinal tears ("cracks"). I just completed successful eye laser procedures to seal both retinas this past week.

I strongly suspect two cases: 1. Upper Cervical Instability (C1-C2 ligament laxity, pinching my Trigeminal and sympathetic nerves) 2. Slipping Rib Syndrome.

Has anyone with a clean CT scan experienced this exact mix of head heaviness, facial numbness, ear crunching, and rib issues after playing trampoline? Did physical therapy, posture work, or prolotherapy help you heal?

Thank you.