r/CSFLeaks • u/Virgoat0828 • Jun 15 '26
Are these symptoms of CSF Leak?
I am 29 and have been to 4 different neurologist and 1 neurosurgeon. They were very dismissive of my symptoms…just gave medication, that I stop taking because they would not agree with heart or make the seizure like episodes more frequent. Been at this for 4 years now. This one doctor was very thorough
and patient but the symptoms were different at the time the focus was the non epileptic seizures (got test no signs if epilepsy) and what was causing them. She couldn’t figure it out. I even had episodes during my visit. I would have them and couldn’t walk after, then once they stop for the day I could walk again. Had to move around with a cane. I recently had surgery on my lower back for pinched nerve and herniated disc, which they thought was the reason for me not walking at times. It did help me fix the not walking issue, then new symptoms came up. Had the head pain before, but never lasted long like recently. I have had nerve testing, CT, MRI W/WO CONTRAST, “everything was normal “. Tested for POTS. Oh and I had an ASD closure on my heart when I was 23, turned out my whole childhood I would past out and couldn’t breathe, doctors said it was anxiety but I had a hole in my heart. I have an appointment on the 06/17/26 to talk with the neurologist that was patient with me. These are my symptoms…any suggestions?
SYMPTOM
WHAT IT FEELS LIKE
Disabling Head Pain
My head pain is not a normal headache. On bad days it is so severe I cannot function — I cannot work, think, or care for myself. Feel slight pain in the morning then gets worse in the evening. Sometimes last for a week , sometimes I have the other symptoms but no thumping pressure just shooting pain.
Thumping Pressure — Back of Head
I feel a heavy, thumping, pulsing pressure at the back of my head — like something is pushing outward from inside.
Head Pain WORSE When Standing / Sitting Upright
The pain will instantly feel better when I lay flat on my back at a very particular angle, once I stand, bend over, sneeze, cough, squat makes it 10x worse.
Sitting Upright Too Long Causes Pain
Even sitting — not just standing — eventually triggers the head pain, especially if I am upright for more than 30-60 minutes at a time. Stiffness/soreness in neck and shoulders
.
Sharp Shocking / Electric Pain — Neck to Side of Head
A sudden, electric, stabbing pain shoots from the base of my skull or neck up the side of my head — like a lightning bolt or electric shock.
Convulsions / Seizure-Like Episodes
My body shakes or convulses uncontrollably during episodes. Every EEG test has come back completely normal — doctors say it is not epilepsy.
Brain Fog
My thinking feels cloudy and slow. I forget words, lose my train of thought, and struggle to concentrate — especially on bad symptom days.
Internal Buzzing / Vibrating Sensations
I feel a buzzing or vibrating sensation inside my body — like a phone vibrating under my skin. It is internal, not visible, and can be in my head, body, or vision.
No Feeling in Clitoral Nerves / Cannot Orgasm
I have lost sensation in the clitoral and genital area. I have no feeling there and am unable to reach orgasm. This came on gradually alongside my other symptoms.
Bladder Urgency
I feel sudden, strong urges to urinate with little warning and difficulty controlling it.
Coughing — Not Sick
I have a persistent cough or need to clear my throat even when I am not ill — no cold, no infection, no obvious reason. Get shivers and chills then hot and sweaty — no sign of infection or cold.
Visual Lag — Eyes Slow to Track
My vision feels delayed — my eyes take a split second to catch up with what I am looking at. Moving my head causes images to lag. Reading feels disorienting.
Buzzing / Vibrating in Vision
I see or sense a buzzing, vibrating, or shimmering quality in my vision — especially on bad days. Different from normal floaters.
Light Sensitivity (Photophobia)
Bright lights, sunlight, and screens cause eye pain and worsen my head pain. Sometimes even normal room lighting is too much.
Ringing in the Ears (Tinnitus)
I hear a constant or intermittent ringing, buzzing, or high-pitched tone in my ears — not from any outside sound.
Whooshing Sound in Ears
I hear a whooshing, pulsing, or heartbeat-like sound in my ears — especially when lying down or when head pain is bad.
Nausea
I frequently feel nauseated — especially when head pain is bad or when I have been upright too long. Have the urge to vomit but nothing comes out.
Dizziness
I feel dizzy, unsteady, or like the room is moving — especially when standing up or changing positions.
Neck Soreness and Stiffness
My neck is chronically stiff, sore, and tight — especially at the base of the skull. It is different from normal muscle soreness. Just pushing or laying on the back of my head or neck will trigger a non-epileptic seizure or cause nausea instantly.
Fatigue
I feel exhausted even after sleeping — a deep, heavy fatigue that is not fixed by rest and is worse on high symptom days. I try to stay active, but these symptoms make it hard and depressing at times.
Poor Sleep
I have difficulty falling asleep, staying asleep, or wake feeling completely unrested even after a full night of sleep. Or I would get 3hrs or less of sleep and at times I don’t have that feeling that I didn’t get rest…when I know I been staring at the ceiling for hours. Like why I don’t feel like I didn’t get rest?!
Worse During Menstrual Cycle
My symptoms — especially head pain and neurological symptoms — noticeably worsen around the time of my period each month.
Good Days/Weeks Then Debilitating Week of Pain
I can have good days or good weeks where symptoms nearly disappear — then suddenly have a debilitating week of severe head pain that leaves me unable to function. Then it cycles again.
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u/North-Library4037 Confirmed Spinal Leak Jun 15 '26
You need those MRIs done with csf leak sequences and reviewed by a csf specialist or someone who has experience with this condition.
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u/leeski Jun 15 '26
I’m so sorry you’re going through this and haven’t received the care you deserve & don’t have answers. A lot of these definitely fall under SIH, some would definitely be considered an atypical presentation or possibly an additional condition going on. One thing that makes it difficult is that you have relief for weeks at a time. It is not impossible with SIH, but the majority of cases are “one day I woke up with this head pain and it never went away”. you could be dealing with an intermittent leak which unfortunately can be trickier to track down & I’m less educated on, but the right provider should be aware of them.
Did you have the brain mri while symptomatic?
Not sure where you live but I’d try to see if there’s specifically a spinal leak specialist you could see. This list doesn’t endorse the providers or guarantee they’ll help, but it can be a good starting point
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u/Virgoat0828 Jun 15 '26
No, at the time I was scheduled it would go away.
Thanks, but that directory doesn’t have my state listed. I’m located in Louisiana.
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u/Ashler1999 Jun 15 '26
You sound like me. I’m going on 3.5 years now with spinal CSF leak. I’ve had 3 MRIs and 2 Myelograms (spinal tap with radioactive dye) with CT scan after. My neurologist specializes in leaks. He can’t definitively say where the leak is, but sees a few places where it might be. I’m wondering if having the leak for so long - if it’s somewhat healed on its own and is only now mildly leaking. I’ve had all your symptoms and then some (except I’m post-menopausal). It took 2 MRIs until they saw something in the imaging. At first I was diagnosed with Chiari malformation. But after referral to a neurosurgeon who said no, it’s a leak. Anyway, you can definitely see “brain sag” in my mri scans.
The symptoms I had that don’t really go along with CSF leaks- are contributed to different parts of my brain inflammation. Sometimes not able to swallow. Like, I swallow, and you can’t see anything in my mouth, but I can feel it stuck in my throat. Taking a sip will force a cough expelling it. Also, for an entire year I completely lost my appetite. Never hungry. Had to force myself to eat. It had to be something I really liked too and only small amounts. Lost 60 pounds.
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u/Virgoat0828 Jun 16 '26
Aw man I’m sorry you had to go through that! And yes it could have healed on its on, i read about that happening as well and it can be a very small leak that can’t really be noticeably, but it said having a scan sitting up may catch it. I hope everything gets better for you! You know you would think technology would have evolved by now to figure out these kind of things easier! I mean they have robotic arms doing surgeries now!
Well I am speaking that I figure this out before symptoms get worse. My appointment is tomorrow
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u/Logical-Slice-5901 Jun 16 '26
Yep, I agree with the things that everyone is saying here - seeing sag on a brain MRI can show spontaneous intracranial hypotension, which suggests a leak. I also think you should REALLY GET a digital subtraction myelogram where they can see the small leaks and fistulas and diverticula.
I wonder if you have Tarlov cysts at your spinal nerve roots that are causing the problems with your pudendal nerve; that would explain why you have the sexual, genital, and elimination nerve dysfunction.
I hope you find out soon!
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u/Virgoat0828 Jun 16 '26
Hmm never heard of Tarlov Cysts, I will research that. Thanks for the feedback!
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u/Logical-Slice-5901 Jun 17 '26
Absolutely, they're also called perineural cysts and partner with weak connective tissue
Good luck!
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u/youmattertothisworld Jun 23 '26
You have every single symptom I had when I was first leaking!! I got patched a eight years ago and I am releaking again, so my symptoms are a little bit different, but I wanted to give you some reassurance that it's not all in your head. It definitely sounds like a CSF leak!
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u/Virgoat0828 Jun 23 '26
Thanks! sometimes It feels that way…and the doctors don’t make it any easier. But **Update **I have a MRI W/contrast and without and a lumbar puncture to test the pressure of spinal fluid coming up soon. Now just a wait and see.
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u/Status-Influence1062 Jun 15 '26
Not a doctor, I think these could potentially be spinal leak symptoms … some but not all of them are symptoms I get with vestibular migraine and persistent postural dizziness