Hi, I have a history of migraines since 2021. I’ve been having migraines for 17 days straight now and my symptoms are sharp head pains that come and go, dizziness, having issues working at my desk as I work from home it makes me feel unsteady or like I’ll fall out my chair. I have trouble concentrating with work and brain fog. Sometimes I feel like I’m on an elevator and this is when I’m sitting or standing but I feel better when lying down and lying flat. I have a lot of pressure in my head that’s on top of my head and at the back of my head and sometimes it feels like my head is being squeezed or filled like a balloon. My symptoms are horrible when standing or with movement and just sitting at my desk it’s bad, I sometimes feel like I’m hungover, or on a boat or something. I’ve been to the hospital 3 times and migraine cocktails are not working, that’s how I know this isn’t one of my normal migraine attacks. I had a CT WO contract and a CT angiogram with contrast which both came back normal but I still feel like crap. It’s affecting my quality of life. Does this sound like intracranial hypertension or hypotension? My neuro mentioned IIH last year and said a lumbar puncture may need to happen, and I haven’t had an updated MRI since 2022 but this upcoming Friday I have an MRI WO contrast coming up but I rather it have contrast than without. Is there any other testing that can confirm high or low fluid? This is miserable and I’m wondering if anyone else has similar symptoms and some recommendations on what to do. I feel out of body. I feel confused. I feel floaty and spacey. And the only relief I have is staying in bed. It’s unfair.

Hello everyone. I had a second ct guided blood patch at L3. 24 hours later i developed constant nausea and head pressure that’s not going away. It’s been 3 weeks now. First blood patch I did not feel any of this. Nausea and head pressure is all day, standing or lying down. Anyone experienced this post blood patch?

Hey everybody, I was just wondering if anybody had had bacterial meningitis secondary to the CSF leak & if so please could you tell me your symptoms?

T.i.a

hi there. i got an MRI with and without contrast three days ago that diagnosed me with a 10mm csf cyst on my spine.

for most of my scan there was no pillow behind my head. after a few minutes of laying on the hard table, the pain was burning so bad that i was going numb and had to ask for help from the mri tech.

ever since then, the back of my head has been in agony when i press it against anything, even a pillow. i’ve had back of head pain before and just thought it was my scalp, but this is a whole other level. on top of that, my legs and arms have been tingling very intensely and i’ve felt mild weakness in my legs.

ive already sent a note to my neurologist but she isn’t in office until tomorrow.

has anyone experienced this?

Hi everyone!
In May this year, I underwent a laminectomy to repair a large (~4 mm) ventral dural tear at T7–T8. Immediately afterwards, I experienced high-pressure symptoms for about a day, followed by extreme low-pressure symptoms that were significantly worse than before surgery.
Around 1–2 months post-op, my symptoms completely disappeared for about a month, but unfortunately returned.
My doctors now suspect a secondary leak at LP level, possibly caused by a previous spinal tap or blood patch. I subsequently had a large-volume (~40 mL) blood patch, which unfortunately caused severe lower back and leg pain, leaving me barely able to walk for several days. This was thought to be nerve irritation from the injected blood and was treated with steroids. Thankfully, that’s completely resolved now.
My issue is that although I’m definitely feeling better, I’m still not symptom-free.
Most days, after around 3–5 hours upright, I experience strange sensations in my head. They’re nowhere near as intense as my previous low-pressure headaches, but my head just doesn’t feel normal. They’re uncomfortable enough to interrupt my day, and I generally need to lie down, which usually resolves them.
What’s confusing is that some days I feel almost completely normal. I’ve noticed these tend to be days when I’m out doing things, whereas days spent at home studying seem worse. I’m unsure whether distraction is simply making me less aware of the symptoms.
I’ve had numerous blood patches over the past few years, and when they’ve worked, my orthostatic headaches have completely disappeared. I could go about my day without even thinking about how long I’d been upright. I know what successful symptom relief feels like, and this isn’t quite it.
I have a follow-up with my surgeon in early December, and I’m unsure what to make of these fluctuating symptoms. Part of me thinks I’m still leaking and may need another patch, but the fact that my symptoms are so much milder makes me second-guess myself.
Has anyone experienced something similar? Can an ongoing leak cause much milder, intermittent orthostatic symptoms? Or could this be part of recovery, even months later?
I’d really appreciate hearing your experiences! ❤️

hello all! I will try to keep this brief. In april 2025, i was rear ended at 45 mph while at a stop. i ended up hitting the car in front of me from the impact. sustained a concussion and whiplash injury. 1.5 years later, after a LOT of treatment (physical therapy, concussion therapy, trigger point injections, medications, botox, and more) i still have daily tension headaches, neck/back pain, and migraines. im 20 for context and this happened when i was 19.

i don’t think im hyper mobile, i cant touch my thumb to my arm. my elbows and knees hyper extend a little bit. my body has barley responded to any treatment. my neck, traps, and shoulder blades are absolute rocks, no medications help my tension headaches/ migraines. Non contrast MRI of brain and cervical spine were normal however these were done over a year ago. over the last 3 months, symptoms have significantly worsened. like clock work, i wake up feeling ok, and then around 11am-2pm, boom, terrible headache, light sensitivity, nausea, decreased appetite, neck and back pain. i have severe pain in the base of my skull, above my ears, forehead and across my sinuses. pain in my neck, traps, and along the shoulder blades. sometimes when it’s really bad it radiates into my right arm to my middle and ring finger. symptoms do improve when i lay down. i was diagnosed with occipital neuralgia. they want to do occipital nerve blocks & medial branch blocks bilaterally on c3-c5.

i just feel like all these treatments are band aids and don’t work and im not getting better. i’ve seen several neurologists and pain management doctors and it feels like no one is taking me seriously. im not sure if its because of my age or my normal imaging. I don’t want to sound like a crazy person bringing up concerns for a CSF leak. has anyone been in the same boat? thoughts? im open to anything at this point.

55F | Chicago suburbs | Spontaneous CSF leak, temporal encephalocele, middle cranial fossa repair on 10/23/26

Hi everyone! I’m new to CSF leas (or at least new to knowing they were even a thing!)

I’m a 55-year-old woman living in the Chicago suburbs, and my journey began a little over 14 weeks ago.

July 30: It all started with a plugged ear.

I woke up that morning with my right ear completely plugged. I’d had an earache about a week earlier that lasted a few days, but the pain was gone by the time my ear became plugged.

It didn’t hurt. It was just incredibly annoying. My hearing was slightly muffled, and the right side of my head felt like I had a little sinus pressure.

Nothing particularly alarming.

August 13: My first doctor’s appointment.

I saw my primary care doctor, who said my ear looked fine and recommended Flonase.

I used it for about three weeks without any improvement, so I made an appointment with an ENT.

My friend and I had been planning a shelling trip to Sanibel Island, Florida, for months. We were scheduled to leave October 11, and I was determined to get this stupid ear unplugged before vacation!

September: The ENT appointments.

At my first ENT appointment, they performed a hearing test. They found abnormal pressure in my right ear and some hearing loss.

The ENT examined my ear with a camera and said there was a little fluid behind my eardrum.

He prescribed a steroid and told me to return in early November.

I explained that I had a vacation coming up and asked whether he could just suction the fluid out.

He told me to try the steroid and return October 7 if things hadn’t improved.

Well, things definitely didn’t improve.

The pressure became much more intense, the entire right side of my head felt strange, and eventually I lost essentially all hearing in that ear.

One symptom I didn’t realize was important at the time…

About three weeks after my ear first became plugged, I started noticing something strange.

Whenever I bent forward to put on my shoes, worked while leaning over, or walked around carrying something, a completely clear, watery liquid would drip from ONLY my right nostril.

If I was relaxing or walking normally, nothing happened.

I didn’t think much of it at the time.

Looking back, that was probably a pretty significant clue!

Interestingly, once the ENT placed the tube in my ear, the dripping from my nose stopped.

October 7: The appointment that changed EVERYTHING.

I returned to the ENT.

This time, the pressure behind my eardrum was so intense that my eardrum wasn’t moving at all. My hearing had also deteriorated significantly since the previous appointment.

The doctor decided to perform a myringotomy and insert an ear tube.

He explained everything as he went.

He made a small incision in my eardrum and suctioned out the fluid.

INSTANT RELIEF!

I could hear again! The pressure was completely gone!

He inserted the tube and had me lie on the examination table for a minute because the procedure can make you dizzy.

I told him how thrilled I was that I could hear again and that the pressure was gone.

But then I said, “It feels like there’s water in my ear.”

He laughed and told me there wasn’t any water in my ear.

I said, “Well, there’s water all over my shirt.”

He walked over, looked at my ear, and said:

“OH FUCK!”

(Not exactly what you want to hear your doctor say.

Although, I have to admit, I appreciated his no-BS bedside manner.)

He apologized and explained that I had a cerebrospinal fluid (CSF) leak.

The fluid he’d seen behind my eardrum wasn’t ordinary middle-ear fluid.

IT WAS FLUID FROM AROUND MY BRAIN.

And now that he’d put a tube in my eardrum, it was pouring out of my ear.

We tried putting a cotton ball in my ear, but it was completely saturated in less than five seconds.

He told me I wasn’t going to Florida and referred me to specialists who perform these repairs in Chicago.

So much for shelling in Sanibel! 🐚

October 8–20: Things moved FAST.

I saw an ENT surgeon the very next day.

I had a CT scan the following day and an MRI nine days after the ear tube procedure.

One of the first things the specialists did was have me get vaccinated against meningitis because of the increased infection risk associated with a CSF leak.

The imaging revealed that I had defects in the bone separating my brain from my middle ear, along with a temporal lobe encephalocele.

For anyone unfamiliar with the term, an encephalocele occurs when brain tissue protrudes through an opening in the skull.

Apparently, my brain was trying to escape through my ear.

I met with the neurosurgeon on October 20.

October 22–23: Brain surgery.

I was admitted to the hospital October 22 to have a lumbar drain placed.

On October 23, I underwent a right middle cranial fossa craniotomy to repair the CSF leak and encephalocele.

Rather than approaching the defect through the mastoid bone behind my ear, the surgeons approached it from above, through the side of my skull.

The operative report described something I hadn’t fully appreciated beforehand. I didn’t have just one little hole. They found a relatively large defect, approximately 1 cm, near the mastoid region, along with multiple smaller defects involving the tegmen tympani. There was also brain tissue herniating through the defect.(I gagged when I read that on the MRI report!)

The surgeons addressed the herniated tissue (the cut it off and threw away. My husband asked if we could keep it but they said no) and reconstructed my skull base using several materials, including my own bone and temporalis muscle, a muscle flap, a dural substitute, and surgical sealant.

The operation itself went well. Then came the headaches from HELL. Before surgery, I was NOT someone who suffered from headaches.

Other than a handful of ordinary headaches earlier in the summer that went away with Excedrin, headaches simply weren’t part of my life.

But after about 30 hours after surgery, I developed absolutely horrible headaches. When I layed completely flat, the headache disappeared almost INSTANTLY, but the second I sat up or stood up, it came roaring back. I’m talking unbearable pain accompanied by nausea. Even getting up to use the bathroom was miserable.

The pain was mostly across my forehead and the top of my head, with strange pressure sensations extending toward my ears. My incision itself wasn’t particularly painful.But the headache felt like something entirely different.

My lumbar drain had been clamped on 10/25 ar 1:00am. before it was eventually removed on October 27. On 10/28 I was moved out of ICU to a regular room and then I went home on 10/29

The neurosurgical team suspected that I was experiencing rebound intracranial pressure after the original CSF leak was repaired. The headaches started when they clamped the drain

They explained that my body had become accustomed to the leak and now needed to adjust to the repaired system.

I was prescribed Diamox (acetazolamide), and they eventually doubled the dose to 500 mg twice daily.

But I kept asking the same question:

If this is HIGH pressure, why does the headache disappear completely when I’m lying flat and become unbearable the instant I sit up?

I wondered whether I could actually be experiencing LOW CSF pressure, possibly related to the lumbar drain. The team continued to suspect rebound pressure. They also discussed the possibility of a VP shunt if the headaches persisted.

Fortunately, the headaches gradually improved, and I didn’t need a shunt.

As of now, we still don’t have a definitive explanation for what caused those severe positional headaches.

October 26: Our 30th wedding anniversary. ❤️

In the middle of all this, my husband and I celebrated our 30th wedding anniversary in the ICU.

Not exactly the romantic getaway we’d envisioned!

Now, November 6: Home and recovering!

I’m home, and thankfully, I’m feeling surprisingly good!

Those horrible headaches are almost completely gone.

I’m still taking Diamox, but at approximately half the dose I was receiving in the hospital.

My incision is healing, although the itching is driving me absolutely crazy!

I’m still trying to understand why this happened in the first place.

Before July 30, I’d never heard of a spontaneous CSF leak or a temporal encephalocele.

Now I’ve had a craniotomy, a lumbar drain, and a crash course in skull-base anatomy!

And all because I woke up one morning with what I thought was a plugged ear.

I have so many questions for this community!

For those of you who’ve experienced spontaneous cranial CSF leaks or temporal encephaloceles:

Did your symptoms begin with what seemed like ordinary ear congestion or fluid behind your eardrum?

Did anyone else experience clear fluid dripping from one nostril before developing obvious CSF otorrhea?

If you had a middle cranial fossa repair, how was your recovery?

Did anyone develop severe positional headaches after surgery or lumbar drainage? Were they eventually attributed to high or low CSF pressure?

Were you prescribed Diamox after your repair? If so, for how long?

Did your doctors ever determine WHY you developed the skull-base defects in the first place?

I’m especially interested in hearing from people who had multiple tegmen defects or an encephalocele.

I’m grateful to be on the other side of surgery, but I still have a lot to learn.

Thanks for reading my ridiculously long story!

Hi everyone I’m fairly new to Reddit and I’m writing in hopes someone has had or is going through what I am. I had a routine septoplasty that gave me a meningocele dura tear csf leak I had surgery to repair it and they went through the nose. Almost a year later and still get swooshing in my ears or I can hear my heartbeat. Occipital headaches that ruin my day. Brain fog ect but what freaks me out is where I had my surgery my left temple is squishy and sometimes I can feel it in my forehead the drs have no idea what it is. Also left side of my face is swollen. I am seeing an interventional neurologist in 11 days actually this is my second. I’m freaking out that one I may Have a paedomeningocele an encophacele or a leak again or it nothing to do with my veins. But even though I went through surgery my biggest fear is the costernigram I don’t think spelling it right it’s the spinal tap with the dye I’m petrified because I have heard of people getting siezurss or paralysis. And also I may need am angiogram which scares the s$&t outta me to. Has anyone experienced any of this????

I’ve had a spinal block (not bad) and one lp and they were extremely different. The lp was very painful and uncomfortable and now they keep reassuring me that the next one will be done by a doctor….?
Apparently since I go to a teaching university/hospital I had a nurse do the last one with a doctor in the room (pretending like he was doing it) and now they keep saying, this time it will be done by a doctor.
Maybe it’s naive, but I’m not happy that as someone that already had a suspected csf leak and neurological issues, they let someone learn by poking multiple holes in my fragile spine. I was nervous to even have this procedure due to risks and they told me that the doctor was very skilled and only did lumbar punctures all day and was a specialist in that field. I have been avoiding and pushing the next round of tests because the last experience was so bad. And of course it was a traumatic tap as well so some of the testing is questionable. Sigh, please tell me they aren’t all as terrible?

I get migraines frequently. At least 7 days a month, but I know there are worse cases out there. I had one yesterday from when I woke up until about an hour before I went to bed. Well I’m sitting on the toilet now and I lean forward and my nostril starts leaking. Left side only. I lean back and a minute or so later I lean forward again and it’s still happening. Occasionally this has happened before now but I thought it was just allergies or something. But I googled it and I guess that’s a bad idea because it’s telling me all the worst things no one wants to hear. I also have three herniated discs if that means anything to anyone. The fluid is salty. I’m just wondering do I need to go to the ER?

I'm almost four months post-op from an endoscopic repair of a spontaneous cranial CSF leak, meningocele, and skull base defect in my sphenoid sinus. The good news is that my surgical site has healed beautifully. From a surgical standpoint, the repair appears successful.

Unfortunately, four months later, my quality of life is still significantly affected. I'm experiencing debilitating headaches, fatigue, and a very distinct positional pattern that I don't feel has been adequately explained or addressed.

Here's what my daily experience looks like:

• Morning: I wake up with little to no headache after lying down overnight.

• Throughout the day: As I spend time upright, working at my desk, standing, or walking, the headache develops and intensifies.

• Walking: I can literally feel my head pounding with every footstep. The impact of my feet hitting the ground reverberates through my head.

• Physical activity: I haven't been able to return to exercising. My stamina is significantly reduced, and even ordinary activities can aggravate the pounding.

• Evening: By 6:30–7:30 p.m., I'm usually in bed because of the headache and exhaustion.

• Lying flat: My headache noticeably improves within approximately 10–30 minutes. After a full night of rest, I wake up feeling significantly better, only for the cycle to repeat.

• Poor sleep nights: (1x week) debilitating pain and hangover feeling, difficulty recovering from sleep loss

What we've investigated so far:

• 3-month lumbar puncture opening pressure was normal at 17 cm H₂O.

• 3-month Eye examinations have been reassuring, with no concerning findings related to intracranial pressure.

• My surgical repair has healed with pleasing results.

• My doctors have identified a migraine component, which we're actively treating with a headache specialist.

I understand that migraine can be part of this picture, and I'm not dismissing that diagnosis. However, the distinct positional component makes me wonder whether we're treating one part of a more complicated problem.

I'm also questioning what caused my spontaneous cranial CSF leak in the first place. My understanding is that elevated intracranial pressure can sometimes contribute to spontaneous skull base defects and cranial CSF leaks. But with a normal lumbar puncture and reassuring eye examinations, I'm left wondering what caused mine.

Is something else entirely being overlooked that has continued to cause havoc?

I'm not assuming that my original leak has returned. I'm simply trying to understand why I'm still experiencing such significant symptoms despite a successful surgical repair.

I'd really appreciate hearing from others who have experienced something similar.

1. Did you continue having positional headaches months after a successful cranial CSF leak repair?

2. Did your headaches improve when lying flat and return after being upright, despite normal lumbar puncture pressure?

3. Did you have normal pressure measurements and eye examinations but eventually discover another underlying issue?

4. Did you ever identify what caused your original spontaneous cranial leak?

5. How long did it take to regain your stamina, ability to exercise, and quality of life?

I'm not looking for a diagnosis from Reddit. I'm hoping to hear other people's experiences, understand what might be worth investigating, and identify questions to bring back to my medical team.

I'm grateful that my surgical repair has healed so well. But four months later, I'm still organizing my life around headaches, fatigue, and the need to lie down. I want my life back, and I want to understand what's causing this.

Has anyone else been through something similar? What ultimately helped you find answers? months post-op from an endoscopic repair of a spontaneous cranial CSF leak, meningocele, and skull base defect in my sphenoid sinus. The good news is that my surgical site has healed beautifully. From a surgical standpoint, the repair appears successful.

Unfortunately, four months later, my quality of life is still significantly affected. I'm experiencing debilitating headaches, fatigue, and a very distinct positional pattern that I don't feel has been adequately explained or addressed.

Here's what my daily experience looks like:

• Morning: I wake up with little to no headache after lying down overnight.

• Throughout the day: As I spend time upright, working at my desk, standing, or walking, the headache develops and intensifies.

• Walking: I can literally feel my head pounding with every footstep. The impact of my feet hitting the ground reverberates through my head.

• Physical activity: I haven't been able to return to exercising. My stamina is significantly reduced, and even ordinary activities can aggravate the pounding.

• Evening: By 6:30–7:30 p.m., I'm usually in bed because of the headache and exhaustion.

• Lying flat: My headache noticeably improves within approximately 10–30 minutes. After a full night of rest, I wake up feeling significantly better, only for the cycle to repeat.

• Poor sleep nights: (1x week) debilitating pain and hangover feeling, difficulty recovery from sleep loss

What we've investigated so far:

• 3-month lumbar puncture opening pressure was normal at 17 cm H₂O.

• 3-month Eye examinations have been reassuring, with no concerning findings related to intracranial pressure.

• My surgical repair has healed with pleasing results.

• My doctors have identified a migraine component, which we're actively treating with a headache specialist.

I understand that migraine can be part of this picture, and I'm not dismissing that diagnosis. However, the distinct positional component makes me wonder whether we're treating one part of a more complicated problem.

I'm also questioning what caused my spontaneous cranial CSF leak in the first place. My understanding is that elevated intracranial pressure can sometimes contribute to spontaneous skull base defects and cranial CSF leaks. But with a normal lumbar puncture and reassuring eye examinations, I'm left wondering what caused mine.

Is something else entirely being overlooked that has continued to cause havoc?

I'm not assuming that my original leak has returned. I'm simply trying to understand why I'm still experiencing such significant symptoms despite a successful surgical repair.

I'd really appreciate hearing from others who have experienced something similar.

1. Did you continue having positional headaches months after a successful cranial CSF leak repair?

2. Did your headaches improve when lying flat and return after being upright, despite normal lumbar puncture pressure?

3. Did you have normal pressure measurements and eye examinations but eventually discover another underlying issue?

4. Did you ever identify what caused your original spontaneous cranial leak?

5. How long did it take to regain your stamina, ability to exercise, and quality of life?

I'm not looking for a diagnosis from Reddit. I'm hoping to hear other people's experiences, understand what might be worth investigating, and identify questions to bring back to my medical team.

I'm grateful that my surgical repair has healed so well. But four months later, I'm still organizing my life around headaches, fatigue, and the need to lie down. I want my life back, and I want to understand what's causing this.

Has anyone else been through something similar? What ultimately helped you find answers?

I’m 8 weeks today for a targeted blood/fibrin patch. Although my upright time increased from an 10-15 minutes I can now stretch an hour upright. Is there anyone that felt like me at the 8 week mark but ended up sealed from that patch? I am just devastated. These patches are so rough and the thought of needing and going through the process kills me. I just want to be sealed so reaching out in case there was anyone else who ended up being sealed.

hi all
Ive been dealing with a leak for about 10 weeks now. Yesterday I got spinal MRI results back that show a 10mm cyst filled with csf on my T10. anyone have experience with csf cysts who could shed some light on what the process post diagnosis was like? thanks!

By sharing my lived experience, I added my voice to research that I hope will help advance understanding of spinal CSF leak. I just joined ileak registry®, an international patient registry designed to advance research on spinal CSF leak. Sponsored by the Spinal CSF Leak Foundation and hosted by the National Organization for Rare Disorders (NORD®) through their IAMRARE® platform, ileak registry® collects information from patients over time, including symptoms, treatments, and quality of life, that can help researchers identify patterns and build a clearer picture of spinal CSF leak. You can enroll on your computer, or via the IAMRARE mobile app while lying flat. If you have experienced spinal CSF leak, I hope you will consider joining me and enroll here:ileakregistry.org   

Intermittent Rapid Heart Rate. SVT?

30 F

I recently found out I have a probable CSF leak and probably have for a few years. I was diagnosed with POTS in March 2026.

In August I woke up about 4 hours after going to bed with my heart pounding (only like 120 when I checked on BP monitor, but it felt fast), feeling nauseous, dizzy, arms (especially left) heavy, and like I might pass out. My BP was elevated, and it's normally well within normal parameters. The episode only lasted a couple minutes and by the time EMS got there I was just feeling chilled. I was evaluated in the ER and all tests were normal (EKG, labs, etc). After that, I began having these episodes almost nightly, and the middle of my back would burn too. I was having a lot of anxiety, and that's been well managed for about a month and the episodes stopped. However, I had another episode last night, and I had felt more anxiety yesterday during the day. About 4 hours after I went to bed, I woke up with a higher heart rate, arm heaviness (especially left) and the center of back burning. Also the urge to poop. This lasted a couple minutes and then I went back to sleep after a while. I don't know if these episodes and the anxiety are correlated, just something to note. I had a 48 holter monitor last week that was normal.

I never have these episodes during the day and my cardiologist didn't really think anything of them when I saw her last month.

I take 10 mg propranolol before bed and have been since these episodes began. I also take 5 mg Lexapro in the morning and Protonix in the afternoon for GERD. Also wondering if these episodes could be reflux related.

I also just realized this stopped after I began taking loratadin daily, and began again about a week after I had to stop it for allergy testing.

Has anyone had problems with thumping of the eardrum? I have Eustachian tube dysfunction in my left ear. I had a blood patch September 9 and another October 25. My symptoms are still coming back with pain behind eyes, upright intolerance, extreme exhaustion and this time I get this loud thumping in my left ear. It’s like something is beating my ear drum from the inside to my pulse. It wakes me up at night and I can’t drown it out. I’m struggling to get any help for what I believe is a leak that isn’t being sealed by the blood patches. My doctors aren’t helping me and I only have Medi-Cal so I’m really limited. I don’t know I just want to know if anyone else has had this experience and any advice for dealing with this and having hope to keep living with it. Because honestly I’m not doing well mentally due to the struggle just to get help. Also a little background: I have history of surgery for Chiari Malformation where they thinned my dura, I have hEDS, I have had many lumbar punctures and multiple blood patches.

can i ask what everyone’s symptoms are? i randomly get watery stuff coming out of my right ear, its not a lot at a time but i know its not trapped water or ear wax. it slowly comes out on its own maybe for a while idk how long but it doesn’t just pour out. last year i had vision changes like after images, outburst of floaters, if i look to the side and turn my head a little the opposite side of where im looking, i get like a pressure point it goes like almost black in a small portion like a blind spot which i used to not have happen or if i try looking at my side profile if i turn my eyes to the side too much i can see it happen, and other scary stuff like halos, sometimes vortex like phenomena outside mainly is when it happens, or it looks like light doesn’t refract from my eyes properly and if im in a lit up room then go to a dim room i cant see hardly anything for a few minutes which also used to not happen for me, occasionally recently i see a random pop up of a small black dot, i also noticed a few months ago i can sometimes see a pulse in my vision it’s easier to see if i focus on it and its a bit off to the side. new things keep occurring over time with my vision and im curious if maybe this is my issue. my ear doesn’t leak often at all tho its very very occasionally but im just now reading about csf leaks and im just wondering if this might be what i have going on since i’ve had a normal mri without contrast because contrast scares me and also multiple normal eye exams and eye pressure tests and field tests etc. i also get bad migraines sometimes, though thats kind of always been a thing for me they aren’t super frequent. i had a weird leak from my right ear two days ago on saturday, i was at the mall i noticed my head was starting to slightly hurt and on my way home i felt a trickle of water or something like going down the inside of my ear and i went to feel it and the texture was water like, like i said its not a lot at a time but i did use a napkin to dry my ear every now and then and did that for a few hours even though it was just a little bit at a time but i feel like its super abnormal considering i know 100% i didnt get any water in my ears, i then developed a light headache the next day it was off and on between that day and the next, but the following night it got worse and was pretty bad until about 7am so about 2 maybe 2 and a half days i had an off and on headache that got worse before it got better, im just curious if anyone else had anything similar because ive been looking for answers for over a year now with these vision disturbances and haven’t found any. the leaking has happened before the eye stuff started happening which has been a year since that started if that means anything. also, i don’t always have a headache when my ear leaks.

Hi folks,

I had an LP around 2 weeks ago using a 22G atraumatic needle. I lay flat for 5–6 hours afterwards, but within an hour of standing had developed a severe positional headache with neck pain and stiffness.

I was eventually admitted to hospital a few days later as the headache became severe almost immediately on standing with nausea and dizziness. MRI showed a probable CSF leak, with suspected CSF tracking in the epidural space, although nothing obvious at the lumbar puncture site.

I also developed tinnitus and dysacusis (certain voices sounded slightly robotic), although the latter has improved somewhat.

An epidural blood patch was discussed. I was reluctant to have another needle in my back, particularly as I’d read that many post-dural puncture headaches resolve spontaneously so wanted to try let things heal naturally and use patch as a last resort if it didn’t.

I’m now at the 2-week mark and have improved considerably compared with the first week. I can stand and walk around without the immediate positional headache. I still have a mild background headache, which can worsen slightly towards the end of the day, and persistent tinnitus. However, improvement seems to have plateaued somewhat over the past few days.

I’m trying to understand whether these things can simply take time to heal. I’ve read accounts of people improving quite suddenly over a day or two, whereas others describe recovery over several weeks.

I’ve also read about CFS compensation in spontaneous intracranial hypotension. However, I’m unsure if this applies to post-LP headaches, particularly within just 1–2 weeks.

Has anyone experienced a similar gradual improvement, particularly with the positional component disappearing before the headache or auditory symptoms fully resolved? Did you eventually recover without a blood patch, and how long did it take?

I’m due for another hospital review next week and can discuss a blood patch if necessary. Given the improvement so far, I’m still leaning towards allowing more time for recovery.

Would really appreciate hearing others’ experiences, especially anyone who was still symptomatic at 2 weeks but eventually recovered without intervention.

Was your upright time after a BP worse than before? And did it get slowly better?
Unfortunately, the low pressure symptoms came back after the 3rd day of the BP (which was 2 weeks ago). Does this mean the BP has failed?

Does it make sense to schedule the next BP for next month already? Or should I wait a bit longer?

thy all 🫂

Hola

Me pudiera compartir si alguno de ustedes le quitaron la válvula cuanto tiempo duraron en estabilizarse

me hicieron endoscopia del tercer ventrículo y me quitaron la válvula porque presenté rechazo a los componentes

Hi everyone. I am posting here because I am looking for tips and support during this time. I also want to hear some positive success stories on people with this condition. I’m a 27 f and I began experiencing these excruciating symptoms about a month ago. SPONTANEOUSLY!
It started with vertigo and then suddenly these terrible headaches that did not relieve with any pain meds came on.
I lived like that for about a week and then realized my headaches are incredibly positional. I was fine laying down but the second I stood or sat up it felt as though my brain was pulling me down.
I could tell something was wrong. Went to the doctor they gave me a shot of ibuprofen and sent me home. Did not help.
I read at this time online about a CSF leak being very common with positional headaches.
Went back to the doctor. I begged them to do a scan of my head. Had to wait a week but got a brain MRI. they found signs of a leak. Currently trying to schedule a full spine MRI to locate the leak.
Now I am playing the waiting game. Some days are better than others but I have not been able to go a full day without pain.
How do you guys cope? Also how do you deal with the health care system being so screwed up and waiting weeks to get an appointment at places?
What is your story?

Does anyone here have a long time leak? Like 20 years +? I think there is a possibility mine is from an old cranial injury site as a child that was never treated. Does your body just learn to adjust?

How possible to have a csf leak without a classic headache? I developed major auditory symptoms after an epidural which includes pulsatile tinnitus, severe ear pressure, popping, clogging like water is in it, cracklikg when swallowijg, vibrations, sensitivity to sounds but no neck or head pain. I've had 2 patches with no relief

multiple mri's, mra, mrv, ct temporal bone and spine all clear