u/translucent__

Hey everyone!

I figured I'd share what happened with my salivary gland. Last Sept (2025), my neck swelled up like I had a golfball on the side of my neck. Excruciating pain, trouble speaking, trouble swallowing. Went to ER, they told me salivary gland and laughed. I ended up going through the gauntlet of doctors until I found an ENT that specialized in salivary glands here in LA.

Fast foward to Feb 2026, I had a saliendoscopy with a stent placed in my mouth. Under my tongue had become so discolored and tall that I accidentally bit it a few times just chewing gum. Following surgery, zero stones were found! On top of that, the portion under my tongue was pure fibrosis. They had to cut that entire visible part out to even find normal ducting again. I had never heard of Sjogren's at this time and assumed I would be fine.

My surgery site ended up getting infected and towards the end of my antibiotics, I started developing visual phenomena that I was told was visual snow. It was driving me insane. My body also entered fight or flight mode and would NOT chill. We had to stop all SSRIs that I was on for years just to get my body to chill out - out of nowhere. Even my ADHD meds.

Fast forward to April 18, I went to the hospital with suspected stroke. All labs and imaging came back normal, but I had all symptoms of stroke. I've had persistent headaches, visual issues, dizziness, disorientation, tinnitus, you name it since then. Worst of all, my left salivary gland started acting up AGAIN. While it doesn't swell as large this time, I get pain that radiates up into my tongue, floor of my mouth, cheek, and in my neck. I went back to ENT and we were potentially fully going to remove it, but after doing a soft tissue CT, they said they were not able to continue care as the imaging came back normal other than swollen/inflamed/aggravated lymphnodes right next to the salivary gland. They also noted the salivary gland to be swollen, but normal looking tissue. I was at a loss.\

While I'm going down the rabbit hole with Neurology, my PCP asked me to go see Rheumatology. After telling the Rheumatologist everything, she ordered a billion tests (ok not that many, but 14 vials worth of blood work), urinalysis, requested all records from other offices, scheduled me with head & neck surgery, is going to have me do an ultrasound in 2 weeks, perform all physical Sjogren's tests, and most likely wants a biopsy. Most of my bloodwork is coming back clean, but as I have horrific issues with dryness in my sinuses, skin, and my eyes will randomly burn horrifically out of nowhere - as you guessed, we talked a lot about Sjogren's! I'm not sure what to come of it, but I see a lot of folks posting normal salivary glands across reddit or stones and I wanted to share what it looked like when mine messed up without stones haha. You definitely do not want a horn under your tongue. I hope all of you struggling find your answer and get some relief! I hate to think that anyone else has had to suffer like this and I just want my life back, which I also want for all of you. Fingers crossed and curious to see if anyone has had a similar story! I can also share a medication breakdown and testing breakdown.

ALSO, I know it's bad facial hair. Hahaha I wanted to experiment with what it looked like if I grew it out and my wife almost killed me hahaha. Sorry in advance.

https://preview.redd.it/wnntug9f3peh1.jpg?width=1397&format=pjpg&auto=webp&s=360f3d54c5833ffb5c5abcdb08a75bf5d2c77a2f

https://preview.redd.it/lwlvqc0g3peh1.jpg?width=2316&format=pjpg&auto=webp&s=de3978735a104131b6560d7eda3b7dca208b9cc5

https://preview.redd.it/9liuvzjg3peh1.png?width=1145&format=png&auto=webp&s=59f33c6081d1dbd54591ddaaa07f38af4dec03b2

Hello there!

My doctor suspects a CSF leak for sudden onset headaches that I've had since April following a suspected stroke incident. While no blood clots or stroke were found, we haven't been able to find any CSF leaks so far either. My symptoms greatly improve when laying down, so it's his top culprit at the moment. I am waiting on a blood patch currently and in the mean time, he has asked me to try caffeine pills to see if they give me any relief.

From my testing, they do, but it's not what I expected. When I have visual symptoms/disorientation/headaches coming on, I'll take 200mg. For the next 2 hours, maybe a little more, I actually feel like crap with headache and then feel amazing for the couple hours following. Well, amazing will be strong, but I can tell a difference. It then tapers off and fades if I don't take any more.

Has anyone else had a reaction to the caffeine like that? I don't feel hyper or energized, just very normal - more normal than before the pill. How do the pills positively help you? I've just never had a reaction like this to coffee or anything else, so curious!

I am hoping someone has some guidance or a similar story. Not looking for genuine medical advice (I saw the rules), but just want to know if I'm alone in having these issues like this. I do not know if I have migraines - neither do my neurologists. Everyone seems to be at a total loss.

In late Feb, I had a simple salivary gland procedure to fix some bad ducting. No biggie, no issues reported in surgery. During recovery, I got an infection in the gland and took antibiotics - again, no biggie. During the end of the round of antibiotics, I started noticing visual issues. Seeing a little more black, some blurriness, and lots of trouble reading my monitors at work. I then started getting tons of anxiety from the persistent visual symptoms. Went to the ER not understanding what's wrong, told all was fine, given Vistaril. These visual symptoms continued for the rest of March and into April.

April 18, while out to the movies with friends, started feeling very disoriented and dizzy, with a heavy, buzzing pressure at the very top of my head. Remarked to my wife that I felt weird during the movie, but wanted to stay out with friends. Later after the movie, started having trouble finding words and speaking. Had a mild headache, tbh which felt normal. Started feeling off-balance and had to sit down when talking to folks. Flash forward about an hour, I lost all color in my face, felt nauseous, lost balance & had to have help walking, entire left side of my body went numb, and then got the worst headache of my life. Headache came out of nowhere and felt like a railroad tie in my head. We rushed to the hospital and they put me in stroke protocol. All CTs and non-contrast MRI came back clean. Echocardiogram, x-rays, everything else came back clean. I was discharged a day later and referred to neurology. They had assumed it was TIA, but neurology told me the next week they did not believe it was TIA as I have continuing symptoms. Got gaslit by a doctor at a post-discharge clinic telling me that my lamictal (which taken for anxiety for years) was causing this. I had no changes to medication or lifestyle. I exercise regularly, eat mostly vegan at home (wife is vegan), get plenty of rest, and am 34 years old. I had piercing headaches for the first 4 days following my event that led my to the hospital and then smaller ones for the next two weeks after, but otherwise haven't had any again other than very slight, tiny aches that are hardly noticeable.

However....

Since then, I have had DAILY, CONSTANT disorientation, visual snow, BRAIN FOG, dull headaches, balance issues, random chills, blurry vision, and have documented to have lost parts of my upper peripheral vision. I can't focus, I end up in tears because I just legit cannot think. I am struggling at work (they've been so kind and a godsend) and I struggle to drive sometimes. I am getting immensely depressed, as I feel like I will never get a full day with relief. I have never had chronic health issues before and feel like I'm being held prisoner. I also never had headaches or migraines. I had some sinus issues over the years, but never anything like this and they were always resolved with sinus/allergy medications. I have also had ADHD since I was a child, but that lack of concentration is nothing like this. I know that one fully well, but this is next level.

Instead of any typical headache, I get a tingling immense pressure at the top of my head. Almost always at the top of my head, sometimes it spreads to the crown of my head, but 99% of the time it is at the exact top of my head. It feels like something is pushing down on my brain and almost makes me feel like I'm cross-eyed. The disorientation and brainfog are the worst parts. They feel like they hold me back from doing anything. I get so confused so easily and just end up in tears. I'm not a person to cry often and I feel like I can't stop these days. I don't understand what's happening and it's so defeating to have doctors tell me they don't know what's going on. One of my primary care doctors mentioned that it could be hemiplegic migraines, which would explain my stroke symptoms. I just don't get why I don't get any relief, any day. Some days are lighter than others, but I will still say that at max, I only see a 50% reduction. I never have a full good day. I never feel like myself. For the first 1.5 months following the event, I also had very sharp pains at the back right lower part of my skull. It's still a little tender, but mostly resolved at this point.

I have seen:

- General hospital doctors

- Two neurologists (waiting on seeing two more)

- Two ophthalmologists

- Two optometrists

- Three general practicioners

- TMJ/Headache Specialist

Waiting on seeing:

- CSF Specialist (potentially)

- East West medicine clinic at UCLA

- Neuro Ophthamalolgist

- Rheumatologist

All of my blood work has continued to come back normal. All of my MRIs (Brain, Head, Neck, Spine) all have come back normal, as well as CT. I have a perineural cyst (0.8 cm at T-9), but otherwise totally healthy. My eyes have always checked out perfectly well at every doctor I go to, with 20/20 or 20/25 vision on my tests. I've been checked out for binocular vision, uneven eyes, you name it - all normal.

Medications/Tests tried with little to no effect:

- Sumatriptan (no effect)

- Naproxen (no effect)

- Rizatriptan (sometimes slight effect, but generally no effect)

- Amitriptyline (felt some slight improvement over the course of the first week/1.5 weeks, then stopped working)

- Tizanidine (helped my TMJ aching, but no other effect)

- Round of Prednisone (helped with headaches a little, but no general effect)

- Dexamethasone (gave me horrific headaches and dizziness, plus could not sleep at all)

- Magnesium Glycinate (helped with sleep, but no other effect)

- Cortisol Control Blend (L-theanine, magnolia bark, etc) (no effect noticed)

- Holter Monitor (all normal, although while resting at home heart rate spiked to 155 a couple times)

- Echocardiogram (all normal)

- Cold/hot compresses (no effect)

- Laying in dark rooms (no effect)

- Migraine glasses (no effect)

I do not have piercing headaches, pain behind the eyes, sensitivity to light, or sensitivity to sound. My symptoms are also largely positional. When I lay down, I often get relief for everything aside from the visual stuff in 15-45 minutes and symptoms will start again after 10-30 minutes upright. All imaging showed nothing for CSF leaks (I know that 20% of people have normal imaging). I get short term memory issues half of the time and can't recall many days apart. I don't have times where I feel any sort of episode coming on, I don't have crazy visual aura other than the visual snow symptoms, so I feel like I have no idea what's going on. Migraine medications don't seem to make a dent. Doctors keep throwing migraine at me and then telling me to come back in 3-6 months or legit telling me they don't know what's wrong with me to my face. I feel like I'm in a nightmare. Is anyone else like this? Anyone else have these symptoms that largely don't fit into migraines? Does this sound like migraines to you? One neurologist was going to do a lumbar puncture before they suddenly canceled care because they stopped taking Blue Cross insurance (lol). I don't know what to do and would greatly appreciate any insight that anyone has.

I am hoping someone has some guidance or a similar story. Not looking for genuine medical advice (I saw the rules), but just want to know if I'm alone in having these issues like this. I do not know if I have migraines - neither do my neurologists. Everyone seems to be at a total loss.

In late Feb, I had a simple salivary gland procedure to fix some bad ducting. No biggie, no issues reported in surgery. During recovery, I got an infection in the gland and took antibiotics - again, no biggie. During the end of the round of antibiotics, I started noticing visual issues. Seeing a little more black, some blurriness, and lots of trouble reading my monitors at work. I then started getting tons of anxiety from the persistent visual symptoms. Went to the ER not understanding what's wrong, told all was fine, given Vistaril. These visual symptoms continued for the rest of March and into April.

April 18, while out to the movies with friends, started feeling very disoriented and dizzy, with a heavy, buzzing pressure at the very top of my head. Remarked to my wife that I felt weird during the movie, but wanted to stay out with friends. Later after the movie, started having trouble finding words and speaking. Had a mild headache, tbh which felt normal. Started feeling off-balance and had to sit down when talking to folks. Flash forward about an hour, I lost all color in my face, felt nauseous, lost balance & had to have help walking, entire left side of my body went numb, and then got the worst headache of my life. Headache came out of nowhere and felt like a railroad tie in my head. We rushed to the hospital and they put me in stroke protocol. All CTs and non-contrast MRI came back clean. Echocardiogram, x-rays, everything else came back clean. I was discharged a day later and referred to neurology. They had assumed it was TIA, but neurology told me the next week they did not believe it was TIA as I have continuing symptoms. Got gaslit by a doctor at a post-discharge clinic telling me that my lamictal (which taken for anxiety for years) was causing this. I had no changes to medication or lifestyle. I exercise regularly, eat mostly vegan at home (wife is vegan), get plenty of rest, and am 34 years old. I had piercing headaches for the first 4 days following my event that led my to the hospital and then smaller ones for the next two weeks after, but otherwise haven't had any again other than very slight, tiny aches that are hardly noticeable.

However....

Since then, I have had DAILY, CONSTANT disorientation, visual snow, BRAIN FOG, dull headaches, balance issues, random chills, blurry vision, and have documented to have lost parts of my upper peripheral vision. I can't focus, I end up in tears because I just legit cannot think. I am struggling at work (they've been so kind and a godsend) and I struggle to drive sometimes. I am getting immensely depressed, as I feel like I will never get a full day with relief. I have never had chronic health issues before and feel like I'm being held prisoner. I also never had headaches or migraines. I had some sinus issues over the years, but never anything like this and they were always resolved with sinus/allergy medications. I have also had ADHD since I was a child, but that lack of concentration is nothing like this. I know that one fully well, but this is next level.

Instead of any typical headache, I get a tingling immense pressure at the top of my head. Almost always at the top of my head, sometimes it spreads to the crown of my head, but 99% of the time it is at the exact top of my head. It feels like something is pushing down on my brain and almost makes me feel like I'm cross-eyed. The disorientation and brainfog are the worst parts. They feel like they hold me back from doing anything. I get so confused so easily and just end up in tears. I'm not a person to cry often and I feel like I can't stop these days. I don't understand what's happening and it's so defeating to have doctors tell me they don't know what's going on. One of my primary care doctors mentioned that it could be hemiplegic migraines, which would explain my stroke symptoms. I just don't get why I don't get any relief, any day. Some days are lighter than others, but I will still say that at max, I only see a 50% reduction. I never have a full good day. I never feel like myself. For the first 1.5 months following the event, I also had very sharp pains at the back right lower part of my skull. It's still a little tender, but mostly resolved at this point.

I have seen:

- General hospital doctors

- Two neurologists (waiting on seeing two more)

- Two ophthalmologists

- Two optometrists

- Three general practicioners

- TMJ/Headache Specialist

Waiting on seeing:

- CSF Specialist (potentially)

- East West medicine clinic at UCLA

- Neuro Ophthamalolgist

- Rheumatologist

All of my blood work has continued to come back normal. All of my MRIs (Brain, Head, Neck, Spine) all have come back normal, as well as CT. I have a perineural cyst (0.8 cm at T-9), but otherwise totally healthy. My eyes have always checked out perfectly well at every doctor I go to, with 20/20 or 20/25 vision on my tests. I've been checked out for binocular vision, uneven eyes, you name it - all normal.

Medications/Tests tried with little to no effect:

- Sumatriptan (no effect)

- Naproxen (no effect)

- Rizatriptan (sometimes slight effect, but generally no effect)

- Amitriptyline (felt some slight improvement over the course of the first week/1.5 weeks, then stopped working)

- Tizanidine (helped my TMJ aching, but no other effect)

- Round of Prednisone (helped with headaches a little, but no general effect)

- Dexamethasone (gave me horrific headaches and dizziness, plus could not sleep at all)

- Magnesium Glycinate (helped with sleep, but no other effect)

- Cortisol Control Blend (L-theanine, magnolia bark, etc) (no effect noticed)

- Holter Monitor (all normal, although while resting at home heart rate spiked to 155 a couple times)

- Echocardiogram (all normal)

- Cold/hot compresses (no effect)

- Laying in dark rooms (no effect)

- Migraine glasses (no effect)

I do not have piercing headaches, pain behind the eyes, sensitivity to light, or sensitivity to sound. My symptoms are also largely positional. When I lay down, I often get relief for everything aside from the visual stuff in 15-45 minutes and symptoms will start again after 10-30 minutes upright. All imaging showed nothing for CSF leaks (I know that 20% of people have normal imaging). I get short term memory issues half of the time and can't recall many days apart. I don't have times where I feel any sort of episode coming on, I don't have crazy visual aura other than the visual snow symptoms, so I feel like I have no idea what's going on. Migraine medications don't seem to make a dent. Doctors keep throwing migraine at me and then telling me to come back in 3-6 months or legit telling me they don't know what's wrong with me to my face. I feel like I'm in a nightmare. Is anyone else like this? Anyone else have these symptoms that largely don't fit into migraines? Does this sound like migraines to you? One neurologist was going to do a lumbar puncture before they suddenly canceled care because they stopped taking Blue Cross insurance (lol). I don't know what to do and would greatly appreciate any insight that anyone has.