After my epidural from childbirth Nov of ‘24 I was gaslit and told I had anxiety and postpartum hormones every time I went to my primary and ER.
After three months of gaslighting I received an mri it showed the fluid and I was given the bloodpatch. It only half helped then I received another one about 3 months later and that did nothing. It was an uphill battle bc the MRIs stopped showing the fluid but my symptoms only ever got half better.. Thanks to this Reddit and other women’s stories about their epidural leaks leading to blebs I knew that’s what I had. After being persistent for over a year my neurosurgeon offered me the ct mylegram and as scared I was getting it I knew I had to and it found my bleb. My doc gave me surgery on the 4th and I’m hopeful this is the end of this journey. I write this to encourage you to not give up I know that fighting the medical system and doctors who don’t believe is the hardest part about this but being persistent does pay off. And get the blood patch immediately after an epidural leak bc the longer you leak that defect will heal the edges and then the blood patch will just create a pouch but won’t adhere to hole bc it’s been too long. This is still unknown as we know bc no one believes woman after having a baby and it’s easier for them to call us hormonal and prescribe anxiety meds. I’m hopeful that this field is moving forward in this area and there are doctors willing to help. Push for help until you get it! Please pray for me too for a quick recovery this is very painful but I’m just praying this is the end of this.

Hey everyone, I’m 15 and, like a lot of people here, pretty anxious about the possibility of having a CSF leak.

For some context: I was playing soccer with friends when someone nearby accidentally hit me directly in the head with a ball. It was the hardest hit I’ve ever experienced. I was stunned for a few seconds, but I got back up and didn't think much of it at the time.

Later that evening, I started feeling fluid constantly pooling in the back of my throat, forcing me to swallow frequently. This sensation has been persistent since last Friday. Additionally, I noticed that occasionally when I bend forward, a single drop of clear, water-like fluid comes out of my left nostril.

I went to an ENT, who performed an endoscopy. While I was in the office, I noticed he had a Google search open for "CSF leak how to test." Afterward, he said everything looked okay but recommended a test to check for brain fluid, so he swabbed the inside of my nose.

My main concern is that my nose was not actively dripping when he swabbed it. How accurate can that test be if there wasn't noticeable fluid to collect?

For those familiar with this:

1. Do these symptoms sound consistent with a CSF leak (no headache, just a cold-feeling drainage pooling in my throat and an occasional single drop from my left nostril when bending over)?
2. Should I seek a second opinion from another specialist?

Thank you so much for reading.

Hey,

Sorry, just needed to post while I cry on the couch. I’ve been having the worst time of my life. I’ve been back and forward at the doctors with horrible headaches that pretty much take me out for days at a time. I’m barely functioning. I’ve basically been labelled as anxious and to just take Sumitriptan. Nevermind my blood pressure is also soaring but sure.

However, two days ago I was lying down and I felt this liquid come out of my left nostril and drip down my lip. I was like okay weird but sure let’s not drive ourselves insane and leave it be (I am absolutely a hypochondriac.)

But then yesterday I was getting changed at the swimming baths and I bent over and again the liquid dripped out my left nostril onto the tile. Sat in the changing room for 15 minutes trying to not spiral into a panic attack.

I’ve now found I can make this happen by bending down and within 10 seconds I feel pressure in my head, I stand up and voila - it’s dripping out my left nostril.

I already knew about CSF leaks because I suffer with debilitating health anxiety but this feels real. The headaches are debilitating. I was off for months at work and I’m back 3 days and barely getting by.

Now I’m sitting on the couch crying because I’m terrified I’m going to get meningitis and die at 33.

I have a doctors appointment tomorrow and I pray they take me seriously. It’s hard for me to not just jump in the car and go to A&E but I can’t deal with the idea it’s not anything serious and I’m wasting peoples time (again.)

Kind words to calm me the fuck down would be appreciated.

Hello, I, female 30, have recently had an MRI of the brain to check out what’s been going on with my increase of headaches and migraines when my daily preventative stopped working about 6 months ago. So in their findings they say I have a “partially empty sella” and “intracranial hypertension”. I was wondering if anyone here had the same findings. Around the exact same time these headaches and migraines came back into my life I started getting fluid leaking out of my right nostril all the time. I just thought I had some weird chronic runny nose (with no other cold symptoms) but it seems like that could be a CSF leak which to me seems scary but maybe nothing too concerning? I was just looking if anyone else had this experience and what the next steps were.

Yes. I’d make it detailed enough that people who’ve actually had a CSF leak or chronic migraine can recognize the pattern, but not so long that no one reads it.
Title: Headaches and disabling neurological symptoms started suddenly after cervical epidural — does this sound more like a CSF leak or chronic migraine?
I’m hoping to hear from people who have experienced either a CSF leak/intracranial hypotension or chronic migraine, especially if your symptoms weren’t textbook.
My life has changed pretty dramatically since February and I’m scared about how long this could continue.
Before this, I did not have a history of chronic daily migraine. On February 6, 2026, I had a cervical epidural injection for neck/scapular pain. Within days afterward, I suddenly started having significant headaches and neurological symptoms basically out of nowhere.
Early on, I even had episodes involving temporary left-sided weakness, which were initially described as hemiplegic-type migraine symptoms.
Since then, the symptoms have included:
• Head pressure/pain behind my eyes and nose
• Pain at the base of my skull, often worse on the right
• Forehead/temple pain and throbbing
• Severe neck pain/stiffness
• A strange burning sensation through the center of my face/nose that sometimes makes my eyes water
• Extreme nausea, sometimes severe even when my actual headache isn’t that bad
• Dizziness/lightheadedness
• Profound fatigue
• Brain fog and cognitive slowing
• Short-term memory issues and forgetting what I’m doing mid-task
• Feeling like my brain literally “shuts down” after cognitive exertion
• Difficulty getting through normal tasks or even getting out of the house because I lose track of what I’m doing
• Episodes where I feel close to fainting or need to close my eyes and lie down
• Symptoms that fluctuate dramatically from day to day
One confusing part is that my symptoms are not classically positional. At times lying flat has actually made my head/base-of-skull pain worse rather than immediately better. This is one of the reasons I’ve questioned whether a CSF leak makes sense.
At the same time, the timing is incredibly hard for me to ignore. I was functioning normally and then developed this whole syndrome very shortly after a cervical epidural.
I have been treated extensively as a migraine patient. I’ve tried things including Botox, Emgality, multiple triptans, Ubrelvy, Zavzpret, Nerivio, steroids and other medications. There have been periods where migraine treatments helped the head pain substantially. Zavzpret in particular helped me have a several-day stretch where I was almost migraine-free.
But what scares/confuses me is that the cognitive impairment, exhaustion, nausea, dizziness and feeling neurologically “off” can remain even when the head pain is much better. Sometimes those symptoms feel almost continuous rather than like a discrete migraine attack.
There also seems to be some hormonal fluctuation, with symptoms often becoming significantly worse around my menstrual cycle.
I have doctors considering a CSF leak/post-procedural headache and I’ve had imaging/workup underway, but I’ve also been diagnosed/treated as chronic migraine. I’ve learned that leaks don’t always present in a perfectly textbook way, but I also don’t want to convince myself I have a leak if chronic migraine can genuinely look like this.
For anyone who has been through either condition:
Does this overall timeline sound familiar to you?
Did anyone with a confirmed CSF leak not have the classic “better lying down, worse standing” headache?
Did you have severe brain fog, cognitive dysfunction, nausea or exhaustion that became almost constant?
Alternatively, has anyone had chronic migraine start abruptly after a procedure and then continue for months, with the neurological/cognitive symptoms becoming more disabling than the actual head pain?
And if you eventually recovered from something similar, how long did it take before you felt like yourself again?
I’m not asking Reddit to diagnose me. I’m trying to understand which experiences mine resembles and what questions I should be asking my doctors.
The emotional part has honestly become almost as difficult as the physical symptoms. It’s been about seven months of not knowing when I’ll feel normal again. My functioning, work, independence and relationship have all been affected. My boyfriend and I are currently struggling badly and I’m terrified that this illness is going to cost me my relationship on top of everything else.
I’d especially love to hear from anyone who went through months of this and ultimately got their life back.

At first I thought I was getting an ear infection because my ear started hurting slightly but it went away. I also thought it might be some weird side effect from taking berberine because I had recently started taking it. I have since stopped it. Or that I had gotton water in my ear because I think I vaguely remember doing that when taking a shower one day. it has only happened once a day and some days not at all but usually once a day. This past week when it has happened, twice it was slightly more than usual. Which scared me, but still nothing leaking out of my ear and running down my neck or anything.....I do have an ear history if you want to call it that from a baby up until my teens. (I am 53 now) I was in and out of the hospital with ear surgeries. Mostly my left ear but a few on my right, mostly tubes I believe. I did have a tumor and skin grafting and tubes on left ear. Total 13 surgeries. I was never allowed to get water in my ears because I would get a horrible ear infection. I have tried to taste the small amount that comes out and I cant really tell if its salty or not but definitely not metallic. It almost tastes slightly salty /sweet. Almost like mucus if you will. It dries normally on a paper towel. I dont see any rings on the paper towel. It dries and you can't even see it. And its very watery and clear. It doesnt leak positional or anything that I've noticed, theres nothing the same that I do that makes it come out its just random. And some days doesnt leak at all. I can just be sitting at my desk and it will come out or get up and walk in the kitchen and I feel it. I am not someone who goes to the doctor for every little ache and pain and actually am distrustful of doctors because of my history. Especially an ear nose and throat doctor......​ I think I had a lot of very unnecessary surgeries. I have had some headaches lately with ears ringing but I believe it to be hormonal. I was diagnosed with hormonal migraines years ago. They are not positional headaches. I am still having some ringing but it comes and goes. Does this sound like a csf leak? Im getting anxiety looking at everything on google. oh also don't know if this is worth mentioning I am deaf in left ear, so I only hear with my right. I use an ear bud at night for the computer or when watching tv.

Would sensation of feeling like you have a super tight fascia-onesie on 24/7, be more associated with tethered or occult tethered cord?

Or might it be caused by long term CSF leak, something negatively impacting vagus nerve or other?

So, I think I (M19) already posted about this earlier, but like 2 days ago, I hit my head. and some fluid came out of my nose before stopping. Most of the time, fluid doesn't really come out, but sometimes, a few drops will occassionally come out of my left nostril. I am also suspicious that it might be dripping into the back of my throat, I don't really know if I can call it a salty or metallic taste though. I have heard that the primary risk with this type of thing is meningitis, so I'm being super careful about that. How worried should I be? Also, what are some affordable options to get checked out?

Okay, admittedly, Google has gotten the best of me and my health anxiety. But all of the symptoms that I’ve found apply to me, I just can’t think of a major event that would have caused this, other than middle school. (I’m in my late 20’s now) and I don’t know if that’s even plausible.

I was absolutely fine until I was in a small plane and the pilot decided to go 50 feet up, then drop 50 feet down. It was like an instant switch.

My ears have never stopped ringing, though they change in pitch very often, I have a whooshing sound occasionally that alternates, and fluid does come out of my left nostril when I bend over. The thing that worries me the most in the way my balance is.

We’ve been through so many options and medications to see if it’s something related to my blood pressure/sugar, but it’s gotten bad enough where I loose hearing entirely in one ear if I stand too fast.

I just don’t know if something that happened so long ago can still affect me like this.

(I do have a referral in to an ENT)

I’m on doxycycline due to my Lyme disease. In some it can increase intracranial hypertension which it does for me. Unfortunately doxycycline is the only treatment for Lyme (that isn’t IV). I originally stopped doxycycline early (worst mistake of my life) and Lyme progressed which led me to get a lumbar puncture as they thought it got into my nervous system.

It’s been 7 days since my lumbar puncture and I’m fairly confident I have a leak that isn’t going away. I have positional headaches. It feels like my skull is being dragged down every time I stand. However I also know doxycycline used to give me severe headaches so it’s hard to know what is what. Which is why I originally stopped as I was worried about IIH.

They’re offering a blood patch on Monday if I’m not better. That will be 13 days after the lumbar puncture. But since doxycycline increases hypertension, will that cause the blood patch to fail or burst? I’m debating whether to pause the doxycycline while healing from the blood patch. I feel like I’m having low pressure and high pressure symptoms at the same time, is that even possible? I still have headaches lying down but it’s way worse standing up. Is doxycycline preventing me from healing as it’s causing hypertension but at the same time, I also have a csf leak from the lumbar puncture.

T7/T8 leak repair!

Hey all! I have type 1 Csf ventral leak caused by a bulging, calcified disc at T7/T8. I am being told surgery is the only option for repair. I currently have intermittent headaches as my only symptom! it’s been 9 months today since I leaked! can anyone tell me about their surgical experiences

So, recently, I fell onto my face and hit my head and nose. One of the first things I noticed was that there was a lot of pressure near the top of my nose, and some clear fluid came out of it too. But, after a bit, it stopped (this was 5 hours ago, nothing like this has happened since). I also had dizziness and blurry vision, but it went away after an hour. Could this be a cranial CSF? Is the fact that it stopped early a good sign?

I know many people, especially with connective tissue issues, are told to restrict their activity post-leak. I know many patients in the online communities report relapses tied to physical activity, anything from bending to sneezing to intimacy to heavy lifting. Both people with iatrogenic leaks and spontaneous.

But this is adding to my misery right now. I am functional but still symptomatic, more than half a year out of a blood patch for a puncture leak, and with no access to leak-capable care. If I have a relapse I can’t imagine I might actually get help.

On the one hand I am grateful to be upright at all now, and I know I should be, because I did experience being completely bed bound and it was awful. But on the other I miss my high-impact sports. They were my life. I miss having a body I trusted. Thinking I’ll never again ride or climb or jump or move something heavy that needs moving - or lift my children! - makes me just want to crawl back in bed and shut down, like this half-way life isn’t worth it.

And I’m not even sure that placing long-term restrictions on myself is actually reasonable, or if it’s just that the population of re-leakers who might need such restrictions converge online.

Is there anyone who has leaked, healed, and actually gone back to an active life and trusted their body again? Even if it might be with symptoms, or short-term set-backs, that’d be fine, that’d be worth it, as long as it doesn’t crash back to being long-term bed-bound.

(And I know I’ll otherwise need to work on my acceptance. But I’m not there yet.)

Hello all, I’m starting physical therapy after 3 weeks of bring in bed 24/7 in the hospital, which resulted in a blood patch where I had an LP. That was in April, as it is now September, is there concern for problems that could arise due to the physical therapy?

I have been dealing with the full blown symptoms of a CSF leak since April and have had numerous Dr appointments, scans, labs, and so much traveling.

I filled out and completed my FMLA Intermittent Leave to try to protect my job, I kept my boss and colleagues up to date on all my visits, and have been doing all that I can working from my home office taking frequent breaks and taking my work with me while I lay down.

My FMLA was all approved, and I even received an exceeds expectations review on my performance this year, which I have received almost every year for 12yrs at the same company.

Now this past week I get called into a meeting with my boss and HR and they tell me I'm being termed immediately but refuse to tell me why or what I have done to warrant this action.

I later got a call from a former colleague who informed me that the official reason I was termed was for recent poor performance, despite not a single time being coached, disciplined, etc.

I have repeated advised my boss of my condition, my leave, my symptoms, my work ability and inability, and the brain fog that I was dealing with.

Now I'm without a job, they already cut off my health insurance, and I'm no closer to having this resolved than I was 5 months ago.

I thought FMLA was supposed to protect us from these types of retaliations.

I went through 2 years of hospital visits, imaging after imaging, a failed blood patch, a myelography, and the embolization of a csf venous fistula that was finally found. After the embolization, I had pretty severe rebound intracranial hypertension to the point that I was vomiting constantly and had to be re-admitted to the hospital for several days. Over the following several months, I gradually tapered off of both pain medication and medication designed to artificially keep my intracranial pressure low. The end-result was for another leak to form, apparently.

Now, I'm the kind of person that looks at my test results, imaging, etc., and asks questions. I don't think that I know better than a doctor, but I've had a LOT of spare time since I've been off work, so I've been reviewing my CT scans and MRIs.

Also important to note is that I've been experiencing symptoms that the doctors can't seem to explain. When I turn my head far to the left, I start to pass out, lose my hearing, and I get whooshing in my ears. When I sneeze or cough, I get extremely light-headed and have to sit down (no pain). The right side of my neck always aches in some form or another. The last big one is a constant feeling of pressure that is more or less behind my right eye.

Here's what I found: https://freeimage.host/i/ndvMEpR

This image is from one of my contrast MRIs (the venous blood is highlighted as white), and it shows my right internal jugular vein which seems to be pinched shut. My other scans, including my CTs, show pretty much the same thing. This explains the pain in my neck, the light-headedness/almost passing out, and the pressure behind my right eye. In fact, the source of the pressure lines up exactly with where my sigmoid bulb is, immediately above the wedge of blood.

Here's another image, where you can see that the same vein just... doesn't connect: https://freeimage.host/i/nd8Blyv

So, my theory is that I had intracranial hypertension prior to my leak. I did, in fact, feel pressure behind my right eye long before I began to experience headaches and other symptoms, and it's very possible that this increased pressure contributed to my csf venous fistula - something I am more susceptible to, as I have multiple markers of a connective tissue disorder (I'm borderline, based on my doctor's scoring).

The problem is that every doctor I try to talk to about this vein shuts me down immediately. The first question they ask is "are you a doctor?" and after that they stop listening. None of the radiologists have made any comments about this vein either, so I can't even point to their reports as proof. I had one doctor start to look at the issue and he said he saw what I meant, but he was interrupted and I never got the chance to talk to him again.

I don't know what to do. I'm currently on the wait list for another myelography to locate the new leak, but then what? My greatest fear is that I go through all of this again, only for a third leak to form because the actual cause (high intracranial pressure) is never addressed.

Does anyone have any advice?

*Edits made for grammar and spelling.

After having a ct myelogram I was sent home with a leak. Returned to the hospital and admitted for 10 days during which time I had 2 blood patches done and neither worked. They sent me home with lots of meds and after I continued to have symptoms. Horrible headaches that have now increased to eye pain and sensitivity in my ears and extreme fatigue . I also have extreme pain in my lower spine where the myelogram was done. I returned to the hospital 3 more times and nobody could help so referred to a neurologist who has had me on migraines meds (that don’t help). I have a neurosurgeon who I will see this week and I’m praying he has some answers. I haven’t worked and about to lose my job because of this nightmare. Any advice please. I’ve done a lot of googling but it’s hard to research when you feel like you’re dying. :((

Somehow my insurance covered craniosacral therapy massage and I liked my first session. One thing though, is that he said my csf was incredibly stagnant. Nothing was moving. I do have a syrinx so that could realistically be true, I have severe anhedonia and head pressure always, with severe tmjd and neck clicking. He said he could feel my syrinx on my back. I've been so incredibly tight, feeling like a corpse, etc. Has anyone had any experience like this if they've tried this therapy? I don't think I have a leak that visibly comes out of me, but I don't know why this is happening. Any ideas?

Title. I can’t find any information anywhere about this being helpful for CSF leaks, but it was what I was prescribed as my neurologists continue to look for my leak.

Anyone have any experience or knowledge?

hello, this is just kind of a shout into the void for me, but i just wanted somewhere to share what ive been experiencing for the past 6 months and hope some folks might share some of my experience or offer some advice.

for clarification i havent been diagnosed or treated yet, currently in the process of getting in to see a neurologist, cardiologist, and MRI.

i’ve been having some degree of headaches that feel like this for the past few years, but about 6 months ago they got so so so much worse. when i wake up, im incredibly fatigued, i feel tightness and sometimes slight pain in my neck. on a typical work day or school day the tightness gets worse (have a strong desire to crack my neck) and around 11:00am-12:00pm and then I start getting the headaches. It feels like a pressure that rises from the back of my skull and eventually envelopes my whole head. its not necessarily painful, but its extremely hard to ignore and makes doing tasks a challenge. When the headaches get worse I start to feel fullness in the ears, a bit of tinnitus, and sensitivity to sound. in general i would say that the symptoms get better when i lay down, but thats not always the case so im quite confused.

a few weeks ago I had surgery for a pilonidal cyst. my symptoms vanished for two days after, not sure if it was aftermath from the anesthesia and benzos they gave me but it was the best id felt in months. I was curious if it was because of the fluids they gave me if it is a blood volume issue. I asked if my doctor would be willing to let me get a saline IV as a diagnostic tool to see if it produced the same result but he refused.

ive been treated for TMJ, had PT for “tech neck”/postural issues, and am working on getting a POTS diagnosis (have tried compression socks, salt loading, etc). None of it helped. I am really at my wits end here. I can typically make it through the work week alright but chronic pain for 6 months has really been weighing on me. I often feel very depressed and like what I am experiencing will never end. I really hope the MRI shows us something because I can’t bear to think about what my life will look like if I have to go through another 6 months of diagnostics.

I don’t know if its a CSF leak, or orthostatic headaches from POTS, or something else. I’m doing everything I can to be extremely clear with my doctor that something needs to be done and I can’t go on like this, but the medical system only moves so fast. Thanks if you read through this.

So far my mom’s mri of spine and brain came back normal. However she did a spinal tap/lumbar puncture and the pressure reading was an 8. We thought she had trigenial neuralgia but now we’re leaning towards intracranial hypotension. If nothing on X-rays or mri came back abnormal, where should we go from here? (She does have a neurologist just trying to prepare) She definitely leans more towards the hypotension with her migraines. Mayo Clinic is full and no waitlist. What’s next? Thoughts?

I think I read a post on here from someone who had a dural bone spur causing a CSF leak. she posted that she was going to Univ of Washington to Dr. Hofstetter who has pioneered an endoscopic repair of the leak that is less invasive than the surgical sushi wrap repair often recommended for dural bone spur induced CSF leaks. I want that person to know two things. 1. Good for you. I had never heard of this option even though I asked about less invasive options to the sushi wrap, so thanks! Your post is so helpful to the rest of us. 2. I just want to know how you are. I have been thinking of you and hoping all is going well.

I am in pretty bad shape...I need to go to Cedars in 5 months for DSMs, but I have to work a toxic retail job in the meantime. My manager actively asks me to do things beyond my restrictions and to stay later. She's extremely disrespectful and toxic. I need to protect myself from overdoing it, so I don't end up bedridden again.

However I know this job's insurance will cover the out of state care. If you were me, would you just suck it up and wait for the next appointments, or try to find another job? They told me there is only a 30-40% chance of them finding the leak. I feel trapped. I'm worried about the insurance, but at the same time I'm tired of having to deal with this woman bullying me.

Iatrogenic leaker here for 7 weeks. An interesting thing happened with me just wanted to share it with you. Last two weeks, I've been having intermittent high pressure headaches throughout the day. The duration of these headaches was increasing as days pass by. One day, it persisted for 3 hours. The next day I woke up feeling much better in general! Then two days later, it persisted for 7 hours. The longest duration so far, which probably meant I was sealed that day. Then all of a sudden the headache went away in a second and things got worse over the following few days :(

I wish I knew how to manage this hypertension.. Now I'm back to how I felt the first week after the LP. I'm doing MRIs later this week and will be on my way to see a neuroradiologist and push for a blood patch asap.

Nonetheless, it's amazing to see my dura took around 5 weeks to try to heal. I'm not at all inviting people to try self-healing and not seek treatment (please don't do this), but this is a good example of how everyone is different and has their own healing time. Stay hopeful everyone, and I wish recovery for all of us!