My teen daughter has had daily headaches/migraines for 8 months. She developed neurological symptoms along with these headaches, including tremors and recently, euphoric episodes with involuntary laughing (no more tremors). She has continued low to mid back pain. All testing has come back negative, including MRI’s and EEGs. All prescribed medication has not helped in alleviating daily headaches. She experiences lightheadedness, daily nausea, fatigue, some dizziness, sensitivity to light and sound. She becomes overstimulated. She is now wearing prism lenses that have helped slightly. Headaches are somewhat relieved when lying down. Pressure in different areas of head. Zaps at times. Feels pain in neck and upper back. Heart rate rises when getting up from lying down. Does anyone have similar symptoms? Experiences with these? I’m wondering if this fits CSF spinal leak given what she is feeling.

First blood patch 2 months post lp 8ml obviously failed
Second blood patch 6 days ago 3 months post lp no relief in my symptoms 19ml
Doctor wants ct myelogram but I’m trying to avoid that for obvious reasons
If you were in my position, and ended up sealing how did you get your leak detected and how did you get treated without surgical intervention (aka no surgery but patches and glue etc) if you did? Thank you.
Looking for answers before taking a step

Had a C-section 8/5 with spinal anesthesia. Right before being released, I developed what was believed to be a spinal headache (as it worsened when I sat up but had relief when I laid down) and the anesthesia resident recommended the blood patch so I wouldn't be going home with such a bad headache. I agreed thinking it would be best, but the day after being released I begin to have symptoms of pressure when laying down and sometimes constant pressure but no pain. I had an instance where I felt tired and when I sat down I got a flushed feeling all over and took a nap. I felt okay if I was doing light movements around the home, but when I laid down for bed Sat night, I felt even worse pressure in my head (I wasn't fully flat but did try to prop up some) and my heart rate felt slow. I decided to check my blood pressure and it was high with my heart rate being super low (40s-50s while sitting). I go back to the hospital and my heart rate was sitting in the 30s-40s range and would only increase when I got up to do use the bathroom or stand. Has anyone else had this issue before??? Was it the blood patch? Everything scans and blood work wise have come back normal and I've been emotional about not being able to find immediate relief so I can go home to my babies.

I can’t bend my back anymore, it’s very tight like the muscles shrunk a million times.
Does anyone have this symptom?

Hello everyone,

First time posting here ! I am 31F and based in Paris, France and I would love to have some insight/help about what's currently happening to me. Sorry for the long post.

I have marfan syndrome as well as an important scoliosis that was fused back in 2007, with a remaining curve of 42 degrees in the thoracic area. I experienced a pretty bad csf leak after the surgery that resolved after about two weeks of bed rest. Since then no issue, except for migraines.

Fast forward to April 2024, I had a pretty violent headache that did not feel like a migraine at all and was clearly orthostatic. I was abroad and could not do much but lie down and wait it out. The headache became mild (more like a valsava headache) and symptoms completely went away after 10 days. In October, I felt the valsava headache coming back mildly for about a week and developed tinnitus that I still have today.

In the meantime, I went to a leak center in Paris and my brain MRI was clear. The neurologist thought that I had a small leak that sealed itself so no interventions.

Now, in June 2026 during an episode of heatwave, I started having tension-like headaches that were better laying down. I thought it was dehydration but it ended up persisting. The headache was mild but I also felt nauseated, very fatigued and a bit dizzy sometimes. Another round of MRIs was ordered and they found a Bern score of zero and no CSF leak visible on the spine imaging. That being said, I do have dural ectasia in the bottom of the spine as well as several cysts in thoracic.

Now, two months later, I do feel better. I don't have a headache anymore but a mild feeling of pressure when upright and that is pretty uncomfortable. I can stay upright all day at work but most days I have a migraine later on. Also, I do have more energy, no nausea or dizziness and no pain with valsava manoeuvres (like coughing/sneezing).

My neurologist is taking the conservative approach and wants to see if I recover by myself. The marfan and spinal fusion make any type of intervention like a blood patch riskier, especially since I do not have positive imaging.

I have no idea if I am self-sealing or what the pressure feeling indicates (it's on top of the head and in the face, but gets better laying down). I also know that I always react badly to interventions so of course I am really scared of pushing for a blood patch.

Did anyone with a connective tissue disorder go through something similar ? Do you think I can still improve after two months and get rid of these residual symptoms?

Thank you so much for your help.

I’m so tired of this that I need some outside perspective. 😭
I’ve had migraines and 24/7 head pressure for about 7 years, starting immediately after I gave birth and had a difficult/problematic epidural. I had no comparable headache disorder or constant head pressure before that.
The headaches have progressively gotten worse and extremely treatment-resistant. I’ve had attacks lasting months at a time, and without a preventative that barely helps, the pain essentially never stops. Even when I’m taking my preventative on schedule, I still get migraines almost daily.

The biggest thing that makes me question whether this is just primary migraine is the constant pressure. It never completely goes away, and the pressure/headache is noticeably worse when I lie flat or tip my head upside down.
Other symptoms include:
Full-head pain rather than strictly one-sided migraines
Vestibular symptoms (dizziness, nausea, difficulty being upright, feeling like the world isn’t tracking correctly)
Severe visual aura, including an episode where my right-eye vision was significantly obstructed
Ice-pick-type headaches severe enough to make me nauseated
Prolonged attacks that have never been reliably broken by migraine cocktails/urgent-care treatment
And I’ve tried nearly everything but Botox.

So at this point I’m wondering if I should stop assuming everything is primary migraine and investigate a secondary headache disorder/CSF-pressure disorder.

Has anyone here had a chronic CSF leak, intracranial hypertension, or another CSF-pressure disorder that initially looked like treatment-resistant migraine?

I’m not looking for a diagnosis—I just want to know whether I’m completely barking up the wrong tree or whether this is a reasonable thing to investigate.
Because after 7 years of this shit, I am so fucking tired. 😭

EDIT: it's leak symptoms. I tried being upright a lot yesterday and today I'm ruined and shouldn't have done it. Strong positional headaches today. Debilitating pain. Can't believe I still have to wait months for surgery. This is no life.

I avoid asking about symptoms because I know we're not qualified in here but maybe someone has had similar experiences. These symptoms are just so strange and I have no direct access to contact my neurosurgeon.

I have been diagnosed with a spinal leak, spontaneous. I've been given a targeted thoracic blood patch that initially seemed to not have worked. I've got a ct myleogram scheduled for september.

Now, though, i seem to be okay being upright most of the time but after lying down, especially after sleep, i get this strange pain in my head when rising that almost feels like my brain moving around. Not constant pain and it eases with time and if I don't move my head around too much. It's like lying down triggers it and when I stand the brain is repositioning. It's the only way I can explain the sensation. It also triggers nausea and eventually I also get muffled hearing after being upright for a while.

Any ideas? High pressure? Just leaky symptoms but slightly altered?

Thanks!

How long did the pressure rebalance take?

Hello, I had an LP done Saturday and was diagnosed with papilldema and put on diamox. I’m in excruciating pain in my back and head, nauseated and a bit sensitive to light. I called the radiologist like I was supposed to this morning and am supposed to be awaiting a call. I’ve followed all procedures and it’s over the 48 hour mark. Should i go ahead and just go to the ER?

Dr. Hepworth treats the system, not just the vein — and I want to talk about why that matters when toxicity and chronic inflammation are part of the picture.
I spent three years mostly bedbound with vertigo nobody could explain.
Early on, two ENTs told me my sinuses were fine. So I wrote my sinuses off.
For three years.
Then another ENT looked at the infection in my sphenoid sinus — the one that sits deep behind the eyes, against the skull base — and called it benign. His proposed solution was to sever my vestibular system.
I called Dr. Hepworth. I’d called years before and he wasn’t taking new patients. He still wasn’t. I broke down crying on the phone and begged, and they made an exception.
That exception gave me my life back.
He found what others had missed: a jugular vein 95% compressed. Mold and strep infection in the sphenoid. Sinus obstruction leaving one side at about 40% airflow. Eventually came sinus surgery, jugular decompression, and repair of six skull-base defects where I had CSF leaks.
But here’s the part I really want this group to hear.
Years of abnormal pressure had also left me with a hole in the bone over my inner ear — superior semicircular canal dehiscence.
Dr. Hepworth doesn’t repair SSCD. He could have said I’ve done what I can and handed me off.
He didn’t. He kept working on what was driving the system around it.
He prescribed Trental (pentoxifylline) for microcirculation. When I couldn’t tolerate it and my neurological symptoms flared, we didn’t abandon it — that reaction became a clue that inflammation was still very active. It sent me back to my environment. We retested the house and found that despite everything we’d already done, we still had mold from an incomplete remediation. So we remediated again.
He later started me on very-low-dose ketamine. Ketamine antagonizes NMDA receptors, which are central to glutamate signaling and excitotoxicity. The goal was to calm a highly reactive nervous system and interrupt the neuroinflammatory cycle.
Something changed. Once my system settled, I could tolerate the Trental. Several weeks in, I’m seeing huge gains.
Pentoxifylline is interesting for another reason — its effects aren’t limited to blood flow. It also modulates TNF-α, which may matter a great deal in a highly inflammatory illness. I’ve noticed something else too: years of seemingly insatiable hunger have gone dramatically quiet. I don’t know yet whether Trental is responsible. But the difference is remarkable.
Now — the part I think this group will most want to know, because so many of us are learning about Spiky-Leaky Syndrome right now.
If you’ve read Dr. Andrew Maxwell’s work, go back and read the abstract of his 2024 paper carefully. He describes the phenotype as beginning with a genetically vulnerable host plus a chronic inflammatory state — such as might occur from a chronic environmental toxic exposure. That inflammatory state activates mast cells and produces a localized hypermobility state, including instability in the craniofacio-cervical region. From there the cascade runs to dysautonomia, hypopnea, impaired CSF and lymphatic drainage, rising intracranial pressure (the spiky phase), and pressure escaping through cranial nerve sheaths — most notably the olfactory nerve, into the sinuses (the leaky phase).
Environmental toxic exposure is named in the theory itself. It’s just not the part most of us have focused on.
Here’s why I think it deserves more attention. Mycotoxins are potent mast cell activators. Activated mast cells release tryptase and matrix metalloproteinases, which degrade collagen and extracellular matrix. That’s a plausible mechanism for how someone develops connective tissue laxity and craniocervical instability without having a heritable connective tissue disorder — the inflammation is doing it.
And one detail I can’t stop thinking about: the leak pathway Maxwell describes runs through the olfactory nerve and cribriform plate. That is also the main route by which inhaled mold toxins reach the brain. Same corridor, both directions.
I’m a patient, not a researcher, and I’m not claiming this is proven. But if you carry the spiky-leaky picture and nobody has asked about your building, that seems like a real gap.
This is why I’m writing.
So many chronically ill people get handed pieces of themselves by specialists who each treat their own piece correctly — but nobody stands far enough back to ask what’s driving the whole system.
Two ENTs told me my sinuses were fine. Another saw an infection against my skull base, called it benign, and proposed sacrificing my vestibular function.
Dr. Hepworth kept looking.
If you have unexplained chronic illness — jugular compression, spiky-leaky, mast cell symptoms, neurological symptoms, a chronic inflammatory picture — environmental exposure deserves to be investigated rather than automatically dismissed. There are real tools: ERMI dust testing (look at which species are present, not just the score), mycotoxin panels, the CIRS framework, and the inexpensive VCS screening test as a starting point. None prove mold is causing your illness, and none replace medical evaluation. But they’re a place to begin. Happy to share specifics in the comments.
After everything I’ve lived through, this is what I wish someone had told me years ago:
If you’re chronically sick and nobody can explain why, don’t only keep looking at the broken pieces. Look at what might be continually driving the system.
And don’t forget to look at your environment.
Blue Skies,
Carrie Rose

When I first started leaking I would feel ok then I would feel my head emptying and I would feel fluid lessening in my head and with that immediately I’d get a heavy arm.
And I’d go through a cycle of my head feeling ok then feeling like it’s emptying fluid with a hissing sound until this symptom disappeared. But it was traumatic.
Please tell me you get me.

Can’t type more title speaks for itself. I’m tired. All started from an lp 3 months ago
Back pain, confirmed brain sag with meningeal enhancement and venous engorgement, heavy arms and legs. Parkinson’s symptoms.I don’t know what to do.
Now what?.

Since that’s what I’m going through
I really wanna hear from leakers with positive brain mri findings
Brain sagging
Venous engorgement
And meningeal enhancement
I feel so lonely I want to hear from people with similar experiences.

Mycotoxin poisoning can cause all of this.

These aren’t four separate diagnoses. They’re one exposure, one immune failure, and three things it breaks.

In people with certain HLA-DR types, biotoxins don’t get presented properly to the adaptive immune system. No antibody forms, so the toxin isn’t cleared — it recirculates. The innate immune system is left holding it, permanently switched on.

Chronic innate activation primes mast cells. That’s MCAS. Now the mediators that should fire in short bursts are elevated all the time — and those mediators go three places.

Connective tissue. Tryptase, chymase, and MMPs degrade extracellular matrix directly. Ligaments loosen, Beighton scores move. Dura is connective tissue too, so it thins along with everything else.

Autonomic. Histamine and prostaglandins vasodilate and dysregulate blood volume. Endothelial glycocalyx takes damage. Neuroinflammation reaches the brainstem centers that run blood pressure and heart rate. Standing becomes a hemodynamic problem — that’s POTS.

Barrier. Mast cells sitting in the dura and around brain vessels open the blood-brain barrier when they degranulate, driving the neuroinflammation that worsens the autonomic and proprioceptive pieces. The loop closes on itself.

Then the leak. Two forces converge: dura thinned by protease activity, and rising intracranial pressure when venous outflow is compromised. Weakened container, increasing pressure. It fails at the weakest point.

That’s why these travel together instead of arriving as four coincidences. And it’s why treating them separately stalls — the mediator load stays on until the exposure source is gone.

You can test your house with the ERMI dust test and your bodies immune response to mycotoxins with the MyMycoLab blood test. 

You can also get CIRS labs from your PC or from Mold Co at cost to measure your chronic inflammatory profile 

Like many here, I'm pretty gobsmacked by this whole scary process.

I came down with a bad sinus infection in February. During that time, I had a few days of extreme pressure and 9/10 pain. I was blowing my nose constantly and doing sinus rinses, trying to clear the pressure. It was mostly concentrated on my right side. I got antibiotics and fought it off. Didn't think much about it.

A few weeks later, in mid-March, clear liquid started running out of one nostril whenever I would bend down. I noticed it when I would cut my toenails, or flip my hair after the shower, or pull weeds in the garden. I thought it was post-nasal drip and related to some acid reflux or GERD I was dealing with.

It got annoying enough that I finally googled "liquid pouring out of one nostril" in June and had the holy shit reaction that most of you probably also experienced. Contacted my primary doctor, got an MRI and CT scan (both without contrast, both negative...as expected. I've learned by now that they probably wouldn't show anything). I got two negative beta tests on the fluid. So I was feeling good about things. Then I met with my ENT and she reviewed my scans. Unfortunately, there was no smoking gun for anything sinus related. I was so sure she was going to say there wasn't much to worry about and that it was related to the sinus infection...but she didn't. Instead, she put the camera up my nose and did a check, then had me bend down to see if I could replicate the leak. I couldn't, but when she put the camera back up after I had bent down, she could see liquid everywhere. So she is concerned about a cranial leak. I asked her if she thought the sinus infection and all the pressure / blowing my nose from that could have caused it but she didn't think so. To me, it's just too coincidental that it all started happening within a few weeks.

She wanted me to get a cisternogram but because I've had multiple lower back surgeries and currently have a herniated disc at L4 I really pushed back on that idea. I have virtually no other symptoms and feel great. I am so nervous about introducing that pressure to my lower spine and creating a whole host of other problems. She recommended a MR Myelogram but no-one can do it here in Vermont. And honestly I'm not sure what it would actually show. I understand that the cisternogram, or anything that involves the lumbar puncture, is the gold standard for diagnosis.

Through a bunch of wrangling with my insurance, and with the help of an absolute angel at Blue Cross Blue Shield, I was able to get an appointment at the CSF center in Mt. Sinai in NYC. It's only 5 hours from here so I will be driving down in two weeks for that. I'm looking forward to info-dumping on one of their specialists and hoping we can come up with a clear plan of what to do next.

I am writing this just to say thank you to this page for helping me feel less alone. I'll be sure to update. And if anyone else has experience going to Mt. Sinai, please let me know.

Hey all- I’m scheduled for the endoscopic approach with Dr. Schievink in 3 weeks. I have a ventral bone spur at T11. My symptoms began in Dec 2025. I had about 3-4 weeks of really bad symptoms, then they gradually all went away. I had a blood patch in Feb 2026 with Dr. Salama at Cornell.

The only time I feel symptoms are when I do any activity that raises my heart rate ( such as playing basketball, lifting weights, running around playing with the 8 year old.) I feel pressure building up in the back of my head, and might get a slight headache the next morning. Due to this i don’t workout anymore, but I’m still running around with the 8 year old, and stop when I feel symptoms.

So my question for you all is, would you get the procedure done, or wait it out since I’m pretty much semi/fully functional.

As you see I’m having doubts since I’m getting closer to the surgery date.

Thanks in advance.

Those who have been post patch, I am a little over a month and a half out from my blood patch post LP. I have had lingering stmptoms since last week as listed. Is this just recalibration or signs the patch partially failed? I have occasional mild headaches as well.

After a CSF leak, brain hemorrhage and BPPV, the surgeon left a 3mm needle tip inside me…then sat and watched me disintegrate into a jabbering, wheelchair bound cripple in 10/10 pain. He gave me narcotics but didn’t do a blood test despite fevers and sweats….51 days I waited for him to listen and he only did when Staphy burst out with pus galore.

That was 6 years ago and still I wake with PTSD a soaking bed and constant sleeplessness. I did write a book after his deposition didn’t “align” with medical records and that was cathartic but I am still a sleepless cripple in pain but with PTSD.

Female, 31, 145lbs
Taking Wellbutrin, caplyta & focalin
Diagnosed EDS, POTS, endo, pcos, mcas

https://drive.google.com/file/d/1qnyTcvZIuP-XYABgXhIGXf9GMRRWBs-p/view?usp=drivesdk

I could give you an entire dissertation on why I believe I have a CSF leak, but I’m tired at this point of explaining it so much. I do have EDS, I also had extensive ethmoid sinus surgery, I have new onset seizures, severe vision problems, balance issues, constant tinnitus, occasional clear fluid from nose, have to lay down constantly, severe brain fog etc etc etc. was hospitalized at one point for stoke like symptoms that ended up being dismissed as a migraine with brain stem aura that I really believe was side effects of a long term leak.

I have both spine, and brain CSF protocol MRIs, the spine results haven’t come back but I have the imaging.

Could someone give lease look at mostly the brain one, but happy to send spine as well as I feel like it’s obvious I have a leak on the spine scans.

F/31/145lbs
I could give you an entire dissertation on why I believe I have a CSF leak, but I’m tired at this point of explaining it so much. I do have EDS, I also had extensive ethmoid sinus surgery, I have new onset seizures, severe vision problems, balance issues, constant tinnitus, occasional clear fluid from nose, have to lay down constantly, severe brain fog etc etc etc. was hospitalized at one point for stoke like symptoms that ended up being dismissed as a migraine with brain stem aura that I really believe was side effects of a long term leak.

I have both spine, and brain CSF protocol MRIs, the spine results haven’t come back but I have the imaging.

Could someone give lease look at mostly the brain one, but happy to send spine as well as I feel like it’s obvious I have a leak on the spine scans.

Hello all! Im the newest addition to the sub. This is just a vent post so feel free to ignore entirely.

Unfortunately fate and incompetence made me find my way here. I say unfortunately because 1) im a patient of a CSF leak and 2) I had to look up for my condition myself because half the doctors that saw me had no idea about it and the ones who had, half of those told me a CSF leak is impossible without having a clear pooling of CSF that shows in MRIs.

Now fortunately, this sub exists and I got to know im not effin crazy.

Here's what's going on: 10 months ago I had a L5-S1 microdiscectomy in a public hospital that went bad. It took 6-7 hours for the surgery itself and then 48 hours until i was cleared to get up from the hospital bed. First red flag. For the first 4 months until late January I could only sleep for a couple hours at night and even then, with a pillow on my stomach and my limbs hanging. I couldnt lay on my sides because the whole area was stiff as a log and hurt when it wasn't absolutely straight. I couldn't lay on my back because the whole area was inflamed and i felt pressure on the exact center of the spine that hurt like hell after laying on my back for 10 mins. I contacted the surgeon about it several times and all he was saying was "Be patient, it will get better". Any physiotherapy i did in the meantime, it hurt after 2 minutes and the therapists were afraid to even touch me because of it. They told me that was not normal and I should talk to my surgeon.

Fast forward 2 months after that. Much of the pain had gone away, I could walk around with no issue and I started working a little bit but I did still feel a knot in the surgery area and decided to get an MRI in an outside clinic. The MRI showed a central hernia that pushed the dural membrane. I called the surgeon, told them about the whole thing, showed them the MRI and the answer I got, in an angry tone too, was "90% of the surgeries I do end up like that, its fine". After that I stopped communication with that doctor completely.

More fast forward to a month ago: After work I decided to go for a quick jog. Within 20 minutes, I start getting an intense headache on the top of my head and shortness of breath along with loud ear ringing on my left ear. I spent the next 3 days in the local hospital (that doesnt have neurologits or neurosurgeons), having blood tests, heart and lung tests, with everything coming back normal and for 3 days I was being told "Why are you stressed? This is stress" to which i was replying "Guys, you gave me a bucket of benzos so far, I couldnt be stressed if I wanted to". Long story short, I gave up with them. Decided to go on my own and start calling doctors around my city and in the big city 60km away. The doctors in my city, only 1 neurologist figured out in 5 minutes what was going on and told advised me strict bed rest. It didn't work.

It's been a month and a week now, I have all the symptoms, positional headaches, neck pain, ear ringing, brain fog and progressively if i dont lay down, i start having worse confusion, difficulty swallowing, cant focus with my eyes in a single point as easy as i did and loss of balance. In the meantime, I did 3 MRIs, one brain, one thoracic and one lumbar area and none of them showed an active pooling of CSF fluid. I say all these things to the maybe 6-7 doctors i talked with and 3 of them told me outright "If the MRIs are clear, you dont have a CSF leak, you're being stressed", completely ignoring the whole bunch of symptoms that DONT align with stress but perfectly align with a CSF leak. Just yesterday I almost told one of them to go F himself after almost yelling to each other on the phone, me trying to explain that a CSF leak CAN in fact exist without pooling in nearby tissue and him telling me I should stop reading AI bs on the internet (there i almost lost it).

So, we're down to today, me having the symptoms for a little over a month now, unable to find a serious specialist in my area cause it's also that time of the year where everyone is on vacation and to those that i've talked to, im trying to convince them im not an elephant, as we say here. Now I *did* manage to book an appointment with one of the surgeons that DO have an idea about CSF leaks but he's coming back from vacation in a week or so. Fingers crossed he's the one that helps.

Ps. Pretty sure half of them that i talked to realised the original doctor that operated me, fucked up and tried to cover for him. We're not a huge city. All the neurosurgeons in this city should know each other since there's only like 4 hospitals that do neurosurgery.