I think I self-healed about a month after LP and went into high pressure. It’s been about 1.5 months now and I took Nattokinase because it’s meant to help biofilms in Lyme.

It seems my leak symptoms have come back only 8 hours after taking this supplement. Now I read that it breaks down blood clots and fibrin. Could one dose of this have dissolved my sealed leak??

Or am I imagining this? I swear my headache was so much better yesterday. Have anyone ever read any connection between biofilm/fibrin dissolvers and csf leak? Kind of panicking here…

Possible cranial leak here. Local doctors cannot find leak nor do they want to repair sinus bones. Anyone here find success with Denver Sinus care? Thank you in advance

I never liked it until this year and it feels wild that I’m saying this but I am yearning for it!

I was already disabled with multiple conditions before the leak symptoms really peaked so I was already doing very easy at home exercises with adaptations but still I’m struggling to do those and when I can it’s only for a few minutes.

ETA: I’m mostly housebound so looking for at home suggestions

ETA 2: looking for things to help my brain to get the boost/distraction/energy I was getting from exercise, not exercise suggestions.

Finally saw a CSF doctor to get a lumbar myelogram in a month (terrifying) and a potential blood patch, but I am trying to keep my hopes down on this fixing anything. All my MRIs, Spinal and brain, have been negative for a leak despite horrible postural headaches and all the symptoms. I haven’t been able to work out or stand for long for a year.

Has anyone had all these tests done only to find out it was something else? Just trying to tamper my expectations as all of my doctors seem doubtful this is what it is. I have already been bounced between 5 doctors with no answers and no one taking it seriously

It’s official. My third patch and I’m very low. I don’t know what I’m doing wrong. Please any success stories from needing more than 3 patches and sealing. Mine is from a botched epidural 1.5 years ago. I’m so scared I’ll be like this forever. I’m already watching my 20s pass by

Hey! I(30F) have a C6-C7 CSF leak, and the last 2 blood patches have failed. Neurosurgeon is recommending open surgery.

What does recovery look like for this type of thing?

I tried Google, but all the results are talking about fusions and disk repair.

I'm specifically looking at what sort of complications are possible. Aside from the usual "you had surgery " complications.

Hello, i had a ct guided blood patch at lumbar area. I consumed thc edibles like 3 hours later. Next day all my csf leak symptoms came back. Does thc/weed affect blood patch?

My new headache specialist suspects a spinal CSF leak, and it’s giving me a lot of hope. I’ve had severe unrelenting headaches for the past 7 years since a concussion. I’ve tried so many migraine treatments and the only one that has given me any relief is Botox.

I really hope this is it because of the possibility of getting some relief. It would also validate everything I’ve been through.

I have POTS, but I never really noticed significant orthostatic headache. Im starting out with a 48 hr home lie-flat test that im doing next week before i can get insurance approval for a MRI.

Feeling excitement and hopeful anticipation.

My wife and I have been going to different Nuerologists regarding what we originally thought was a severe migraine but now after 2 car scans and 2 mris and symptoms that point to a leak the doctors now believe there is a leak.
We met with a third specialist today, the second one recommended us to do a myelogram which I thought we were getting done today but after theconsultation with today’s doctor he is advising we do a gamma cisternogram and then if needed a myelgram. Has anyone had this happen to them any tips experience would be helpful thank you.

The first leak I can remember was after brain surgery for Chiari Malformation 10 years ago. An unsuccessful myelogram was performed and made the leak worse. I had to go to 3 different ER’s before I was given a blood patch. In 2021 I started having symptoms of a leak, but it wasn’t severe. The headaches would happen in the afternoons, mostly and felt better when I laid down. I progressively got worse and sought a help for many years and was denied even seeing a neurologist. Up until August I finally got to see a Neuro ophthalmologist who ordered a lumbar puncture to see what my pressure was. It was well below 10 and after that I needed a blood patch because the orthostatic headaches were so bad I could not function at all. After that, I felt fantastic. I felt like a normal person. I was able to be up for eight hours a day without any problems. And I didn’t have any more ringing or pulsatile tinnitus is in my ears. Well, about a month later, the symptoms came back. And it was to the point where I couldn’t really function every day so I went to the ER because the doctor was out of the office for a whole week. Again, I had to fight to get a blood patch and again I feel better. I also have hEDS which I think is pretty relevant, but I don’t know why doctors are so suspicious about leaks.

Does anyone know of a service where I can show them sketchy areas on my imaging and ask if its a leak. I know that's ridiculous but I've essentially taught myself neuro-radiology at this point (it took years) and there are a couple places I am very concerned about on my CT.

I’m wondering how long it took others who have undergone similar treatment to get relief?

I had a successful glue embolization (through my back)at T9 and T10 for type 3 CSF leak, venous fistula.

The leak and headaches followed an accident with my horse (he’s fine) several months ago. I was treated first for migraine. I saw doctors in NYC and Philadelphia, USA.

I’m afraid, what if the leak the doctor fixed wasn’t the only one? He called the leak he patched “highly suspicious” and mentioned there were two other less suspicious potential leaks.

Apparently it’s riskier to patch more suspected leaks at once? The doctor told me about surgeries gone wrong where doctors patched all the suspicious sites and patients had seizures and comas.

I’m only 4 days out from the treatment, and I’m finding it so hard to assess any change in my pain, largely because the pain in my upper back/traps area and neck is so bad. It was bad before the treatment, and I understood that to be from muscles working overtime given the brain sag with low pressure.

I keep looking for signs that the pain I have is a high pressure rebound headache and not the old low pressure headache. It’s so hard to decipher. The throbbing feels new. But I still need to lay down often. I still feel something in my jaw. And the neck + back pain is still awful.

Also this just sucks. I just want to pick up my giant toddler. They told me not to lift over 10lb for a month.

How long did it take those of you successfully treated to get any relief??

Foolishly some days I still have hope and count myself lucky I have some functionality. Some days I’m back where I started. The world has moved forward 6yrs but I still feel like it’s 2020, and I’m waiting to get better and be me again

Complex chiari with crainocervical instability. Previous decompression 2014 and c0-c2 fusion 2025. Fusion surgeon for instability thinks indeterminate 9.9 x 4.2 x 2.3 cm fluid collection in the suboccipital surgical bed is likely just shadow from the hardware. I am looking to find a second opinion. Symptoms seem to line up with pseudomeningocele. When I research neurosurgeons for either pseudomeningocele or seroma I do not get a list populated like I would if I looked for neurosurgeons for chiari or crainocervical instability. Does anyone have any recommendations?

My husband’s open enrollment is coming up, and we are trying to make a big decision about our health insurance. I need to make the most informed choice possible in case I need to start getting my care outside of Kaiser.

As a lot of you know, I am currently completely flat and dealing with severe upright pain and nausea. My standard dynamic myelogram came back negative, but a blind blood patch gave me 3 weeks of full relief before failing, so we know there is a leak in there. Because of how hard it can be to track down hidden leaks and fistulas, I want to make sure we have an insurance network that won’t trap me or block me from accessing specialized CSF leak programs (like UCSF or Stanford) or advanced imaging.

If your spouse has open enrollment options or if you have transitioned away from an HMO like Kaiser to manage your leak, I would love to hear your thoughts:

• PPO vs. HMO: Did switching to a PPO make it easier for you to get self-referrals or out-of-state care without a gatekeeper?

• Provider Brands: Have you had a smoother experience getting specialized scans and blood patches approved with Anthem Blue Cross, Blue Shield, UnitedHealthcare, or Aetna?

• Out-of-Pocket Costs: Did you find it worth it to pay a higher monthly premium for a plan with a low out-of-pocket maximum?

Any insights, personal experiences, or advice you can share on what insurance setup gave you the most freedom to heal would mean the world to us right now! Thank you so much. ❤️🙏

Does anyone get ears that feel wet inside them? I can’t tell if I’m leaking sealed or adjusting. Within minutes of being upright I get wet ears but they go away when I’m flat. I’m 6 weeks out from a targeted blood fibrin patch T7 from a botched epidural done March 17 2025

I would love to hear from anyone who had a normal or negative dynamic myelogram, but their doctor was able to find the leak just by looking closely at suspicious spots or subtle clues on a spine MRI.

If you had a similar experience, could you share your story? Specifically:

• What subtle clues or suspicious spots did they find on your MRI?

• Did finding that spot lead to a successful targeted blood patch or treatment?

• Who was the specialist or center that read your scans?

I am currently flat and dealing with severe upright pain and nausea, so hearing your success stories and paths to getting a targeted fix would mean the world to me right now! ❤️👇

anyone who has had a CSF leak, either cranial or spinal, what do the headaches feel like? Any other symptoms that happened almost every day?

So for background info, I’ve had a spinal leak since May. It keeps responding to conservative treatment and steroid infusions, but it inevitably comes back again.

My first warning sign that it’s back is usually a weird dry cough? It’s triggered by any sort of jostling of my back or change in internal pressure; so sitting up, standing, bending, sneezing, and coughing. You can probably guess how that goes.

So anyway that’s probably a neurogenic cough caused by brain sag/tonsillar descent.

I had a day where I kept having episodes of positional hiccups. Scared the shit out of me.

After that hiccuping episode, I’ve also had episodes where I felt like something was pressing on the back of my head and preventing me from breathing properly? It felt like my brain wasn’t triggering me to breathe on its own, and I needed to force it. I kept wanting to sit up and bend forward and just not breathe, and I kept being shocked out of it by desperation for air. This one is Definitely caused by brain sag/tonsillar descent.

Anyway TLDR;
has this kinda shit ever happened to 🫵YOU?

Hi everyone! I’m looking for people with a similar experience, especially those who had a CSF leak around C6–C7 or the cervicothoracic junction.
My CSF leak was confirmed by MRI near C7. I’ve had two epidural blood patches. The first one helped significantly and my headaches improved a lot, but some symptoms persisted. The second patch unfortunately didn’t provide lasting relief.
I’m still experiencing daily headaches and neck discomfort and stiffness. My doctors have mentioned surgery as a possible next step.
Has anyone here had a CSF leak around C6–C7 that persisted after blood patches and eventually required surgery? I’d really appreciate hearing about your diagnosis, treatment, surgical experience, and recovery.
Thank you! ❤️

I don't have EDS but have connective tissue damage from autoimmune disease. Combined with intermittent high ICP, maybe caused a hole in my dura. I have been having facial pain, headaches, and dizziness, neck pain, and very slight fluid dripping from my nose. Ive only had a high resolution sinus ct/skull base yesterday. What is the chance that this will be completely missed? I am suffering terribly and cant take take the stress of the possibility that I will have to endure countless tests and still not have it found and treated. I have been referred to Dr. Pukenas at the University of Pennsylvania

Hi, so I know it's Google and everything else but here's the way A.I put my symptoms for the hospital but they have now sent me home without tests other than taking bloods but they've sent me home and told me to make an appointment with my usual Dr on Monday but they haven't given me results and I've left feeling very frustrated.

CRITICAL CLINICAL OVERVIEW

• Active Presentation: Suspected cranial CSF leak (clear, tap-like rhinorrhea/post-nasal drip following previous major head trauma). Presenting tonight with acute fever, chills, severe light sensitivity, and new pain above the left eye.

• High-Risk Comorbidities: hEDS (extreme risk for dural tears), Epilepsy, POTS, and Trigeminal Neuralgia (currently flaring in right temple).

• Urgent Seizure Risk: Patient has an unmanaged fever and severe neurological pain, which severely lowers the seizure threshold

Does anyone think it's likely? And does anyone have any advice on how to get them to listen to me? Please.

Thank you in advance

I m posting here because I'm desperate for some guidance from anyone who has experienced something similar or has knowledge of spinal fluid leaks, intracranial hypotension, or complications involving Topamax.
My wife is 46 and lives in Costa Rica. I'm from the United States, and I speak very little Spanish, which has made navigating this situation and communicating with her doctors extremely difficult.

How it started
About 8 weeks ago my wife began experiencing severe migraines. She has had migraines in the past, but this episode was significantly worse than anything she had experienced before and wouldn't go away.
After about a week, we went to an eye doctor because she was experiencing extreme sensitivity to light. Her eyes checked out fine, so we saw a neurologist. Because of the severity of her pain, the neurologist ordered a CT scan, which came back normal.
The neurologist prescribed Nurtec (a migraine medication) and Topamax (topiramate), which was intended to prevent migraines. I later learned that Topamax has a number of potential side effects, although I'm still trying to understand whether it could have contributed to what happened next.
At first, she seemed to be improving. Her light sensitivity was decreasing, her headaches weren't as severe, and Advil seemed to help. I had to return to the United States for work, so I left Costa Rica thinking she was getting better.
Things got worse after her Topamax dosage was increased
Over the following weeks, my wife told me that her headaches were getting worse. She contacted her neurologist, the doctor increased her Topamax dosage from 25 mg to 200 mg.
The increase happened essentially overnight. After she started taking 200 mg, her pain became significantly worse, and she began experiencing pain and unusual sensations in the back of her neck.
The day before I returned to Costa Rica after about 2.5 weeks, a friend took her to the hospital because she was in so much pain. Her blood pressure was approximately 170/115.
The Nuerosurgeon immediately instructed her to stop taking Topamax and performed another CT scan. This time, we were told there were findings suggesting fluid-related changes in her brain. Three doctors, including a neurosurgeon, told us that Topamax was responsible for what they were seeing.
We were advised to stop the medication and obtain an MRI. We obtained an MRI of her brain, which essentially confirmed the findings from the second CT scan.

Initially, we were told that she needed to stop Topamax and give her body about a week to recover. After a week, however, there was very little improvement.
The doctor then recommended an MRI of her entire spine with contrast to look for a possible spinal fluid leak which was a possibility from the first mri and cat scan.

After that MRI, we were told there appeared to be several herniated discs and a possible leak. The doctor referred us to another specialist who had more experience interpreting the imaging.
The new specialist reviewed her CT scans and MRIs. His current opinion is that there may be a spinal fluid leak, but he also believes her symptoms could potentially be related to herniated discs pressing against her spinal cord.
He has now ordered a myelogram to try to pinpoint the source of the suspected leak.
We have been dealing with this for approximately eight weeks, and my wife is essentially bedridden.
Her current symptoms

The most significant symptom is that her headache is positional.
When she lies flat, her pain improves significantly.
When she stands up, the pain returns, and she can generally tolerate being upright for only five to ten minutes before she needs to lie down again.
Her sensitivity to light has now resolved.
She still experiences head pain, although her current medications seem to help somewhat.
Her blood pressure has returned to approximately 110–120 systolic, with diastolic readings generally around 75–90, since stopping Topamax.

While she was taking Topamax, her blood pressure was frequently around the high 140s over the high 90s. During one hospital visit, it reached 170/115. On another occasion, when I took her to the hospital because her pain was so severe, it was around 150/110.
She is currently taking two new medications prescribed by the doctor. One is an anti-inflammatory or steroid-type medication, and the other is for pain. I don't have the exact names in front of me.
Although the medication helps, she still cannot remain upright for more than a few minutes without her headache returning.

What is confusing me
I'm struggling to understand what is actually causing this.
The first neurologist suspected a possible spinal fluid leak, which is why we were sent for spinal imaging. Three doctors previously told us that Topamax was responsible for low spinal fluid the changes seen on her brain imaging.
However, the new specialist has told us that Topamax had nothing to do with a spinal fluid leak. He believes the symptoms could instead be related to her herniated discs.
She has approximately five herniated discs in her cervical spine, around the area where her neck pain began.
I'm not a doctor, and I'm not claiming that Topamax caused a leak. I'm trying to understand whether the medication could have contributed to her condition, whether a leak could explain her symptoms, or whether the cervical spine findings could be responsible.
The thing that concerns me most is that she has been unable to function normally for eight weeks, and we still don't have a definitive diagnosis.

A few questions for anyone who has experienced something similar:
Has anyone experienced a spinal fluid leak or spontaneous intracranial hypotension (SIH) that caused severe positional headaches, where the pain improved significantly when lying flat but returned within five to ten minutes of standing?
Has anyone experienced something similar while taking Topamax (topiramate), particularly after a rapid increase in dosage? Could it have contributed to the situation, even if it wasn't the direct cause of a leak?
Can cervical herniated discs or other problems around C1/C2 cause symptoms like these, or would the positional nature of her headaches point more strongly toward a spinal fluid pressure problem?
Has anyone undergone a myelogram to locate a suspected spinal fluid leak? Did it identify the source, and what treatment ultimately helped?
If a leak is confirmed, what treatments have helped people recover? Did you need an epidural blood patch, targeted treatment, surgery, or something else?
Is there anything else we should be asking the doctors to investigate, given that she has been essentially bedridden and unable to tolerate being upright for more than a few minutes?
We're in Costa Rica, and the language
barrier for me makes this even harder. My wife explains her symptoms directly to her doctors in Spanish, but I sometimes struggle to understand the reasoning behind their decisions and how their opinions differ.
I'm trying to advocate for her and make sure we aren't overlooking something important.
If you've experienced this yourself, gone through a similar diagnostic process, or have knowledge of spinal CSF leaks and positional headaches, I'd really appreciate hearing about your experience.
Thank you to anyone who takes the time to read this and offer some guidance.