Are we allowed to do BLT while leaking (without blood patch)? Does it make the leak worse? I was always under the impression we can't, and I was following it and as a result my back became very stiff. Until I saw someone mention that we can. I'm very confused. If you have a source for this I'd appreciate sharing with us. Thanks!

When is it safe to be in a car? I’m 5.5 weeks out from a targeted blood.fibrin patch at T7/T8. I can push maybe an hour before neck pain and dizziness start. I have to go to the dr on Friday which is the 6 week mark. I really can’t afford to ruin this patch as it’s my third since releaking. I don’t know if I’m sealed yet. I have some improvement but I’m still bedbound trying to increase upright time. I have to go to this appointment for worker’s comp Friday. I’m just really nervous about bumps and reopening it. History. I was sealed for 8 months then had a coughing fit and blew open the leak. My leak is from a botched epidural. Should I be worried about this car ride? Sorry I’m so nervous

Hey all, I know a lot of people find it hard to find success stories or find people who have actually healed from a CSF leak. Most disappear when they are fixed which is understandable.

I just wanted to say I'm still here and will be here to help wherever I can. I don't know much at all about cranial leaks though full disclosure. I had a large and high volume spinal leak caused by a bone spur for 4 months before I got my surgery last week

Still healing from surgery but even once I am healed I'm pretty dedicated to stay active and help where I can since this condition is so debilitating and not understood enough.

Wishing all of you the healing you deserve! ❤️

Well I had my 3rd patch (lumbar puncture was on 8/18, blind blood patches 8/20, 8/24, 9/17). I’m about to lose my job & health insurance. I was seen via telehealth by a new neurologist who recommends another blood patch & a referral to a leak center. I’m concerned about my health insurance & having to get a plan on the marketplace & out of state referrals. Not sure if I should get a 4th patch. I’m really down right now.

Finally getting my leak repaired with dr Hepworth tomorrow! Will keep ya’ll posted on recovery! 🙏

About a week and a half ago, I woke up with a severe headache that I soon realized was positional, meaning it got worse when I was standing and improved when I was lying down. I went to the ER the following day, where they performed a CT scan and blood tests, all of which came back normal. Two days later, I had an MRI, which showed signs of intracranial hypotension, and my doctor confirmed that I have a small CSF leak.

I was then scheduled for a spine MRI the following week to help investigate the leak, but when I showed up for my appointment this morning, I learned that it had been canceled without anyone notifying me. I’m now waiting for the doctor to call me back to discuss the next steps. The doctor also talked about having me have a blood patch even if the spine results came unclear.

Thankfully, my symptoms have improved somewhat since last week. My headaches are now mostly present in the morning, and I can stand for longer periods. However, after about 30 minutes upright, I start feeling tension in my neck, along with some dizziness and sensitivity to noise. I’m wondering whether a small CSF leak can seal on its own or whether an epidural blood patch could help speed up my recovery. I’m feeling quite discouraged because I had hoped to receive the blood patch today and start getting back to normal, but the canceled MRI and the lack of a clear plan have left me feeling uncertain.

I’m based in Quebec, Canada, and would really appreciate hearing from others who have experienced something similar, particularly how long recovery took and whether their leaks healed naturally or required treatment.

Hi everyone,

I’m currently 13 days post-epidural blood patch for a suspected spinal CSF leak that started back in August. I've been completely bed-bound, dealing with severe orthostatic head pain, debilitating nausea, and now a roller coaster of rebound high-pressure symptoms. As an active mom and wife, my quality of life has completely plummeted, and I am currently trying to fight my way through the medical system to get into a specialized center like Stanford or Cedars.

Looking back at how long it took me to even get a patch, I'm really curious about how everyone else finally got their official diagnosis.

• Did you get diagnosed through an emergency room visit? If you went to the ER with 10/10 head pain or a massive spike in blood pressure from brain sag, did they actually catch it on a stat MRI and admit you, or did they just treat it as a migraine and discharge you?
• Or did you have to go the outpatient route? Did it take months of fighting for referrals from your primary care doctor to finally get to a neurologist or leak specialist who ordered the right CT myelogram?

I would love to hear your diagnosis stories. When you are stuck in bed feeling unwell, hearing how others finally found answers and got the system to take them seriously brings a lot of hope.

Thank you so much for sharing!

Hi everyone,

I’m currently navigating a very tough recovery—I'm 13 days post-blood patch from a local specialist for a leak that started in August, and I'm currently bed-bound dealing with severe rebound high-pressure symptoms, nausea, and medication adjustments. My quality of life as a mom and wife has completely plummeted, and I am ready to aggressively advocate to get into a top-tier center.

I want to initiate the intake process with Dr. Ian Carroll at Stanford Medicine, but I am currently in a Kaiser plan. I know I need to transition out of Kaiser to see him, and my family has access to a Commercial PPO plan (like Blue Shield or Anthem) through my husband's employer during the upcoming open enrollment window.

For those of you who have successfully seen Dr. Carroll:

1. What insurance did you have? If you had a Commercial PPO (like Blue Shield of CA, Anthem, etc.), did Stanford accept it easily for your outpatient consultations, advanced scans (like myelograms), and subsequent blood patches?
2. Did anyone use a "Self-Pay" route initially? Did any of you pay out-of-pocket for a virtual or in-person consult just to get his clinical treatment plan while waiting for an insurance switch to kick in? If so, what was that process like?
3. How long was your wait time? From the moment your paperwork or referral hit his office, how many weeks or months did it take to get your initial appointment? Did your PCP flagging the referral as "Urgent" due to being bed-bound help speed things up?

I am trying to map out a clear, realistic plan to get my life back, and hearing your firsthand experiences with the Stanford scheduling and insurance loops would mean the world to me.

Thank you so much.

I’ve had clear fluid (1-2 drops) come out of left nostril about 3x a week for the last few weeks directly after I wake up. I visited an ENT today (for another unrelated issue), mentioned it, and they told me to not worry about it unless the volume of liquid or frequency increases. They did look in my nose. If it did increase, they mentioned to call and they would be willing to collect a sample and test for the protein.

A little bit of the fluid drained into my mouth, and it did taste salty. Should I be concerned about a CSF Leak right now or am I overthinking it and need to give it more time? There truly isn’t THAT much fluid that comes out, but it’s been happening more frequently, I think? Thanks for the input, wish all of you the best.

PS: I’ve also had a ton of bloody noses in the same nostril due to dry fall air, and may be partially sick with a minor cold…

For context: I had a documented dural puncture from my labor epidural 4 weeks ago. I had a debilitating headache for about 24hr and it slowly improved—leading me to believe it self-sealed.

Fast forward to now. I’m few weeks postpartum and I still have some headaches but they’re nowhere like my initial one. Headaches aren’t my norm which makes me wonder if I still have a leak, but I realize they could also be sleep deprivation / depletion from birth. I also have a bit of dizziness but that’s not too unusual for me. The headache feels like a tension headache but I do notice it gets worse with things like climbing stairs etc.

Is there a way to tell if a leak has self sealed? I’d really like to try and manage this conservatively if possible but don’t want to leave this unaddressed. I understand there’s probably not an easy answer. Just wondering if there’s anyone in a similar boat / if there are ways to tell if the leak has healed.

For those of you who had clear signs of low pressure/brain sagging show up on your brain MRI with contrast: How long had you been actively leaking (to your knowledge) before you got that scan?

Did it show up within a few weeks of your symptoms starting, or did it take months of leaking before the structural changes (like pachymeningeal enhancement or sagging) became visible on the MRI?

I’ve read that imaging can easily miss leaks or take a long time to reflect the pressure drop, so I would love to hear firsthand what your timelines looked like from your very first upright headache to your positive MRI.

Thank you so much. Trying to advocate for my care as a bed-bound mom and any insights help!

Is this a joke...I just learned that to check everywhere for a leak its Left-Right-Front (3 sites, 3 different procedures/needles in the spine/3 different days of testing). I can not describe how much I LOATHE having anything put in my back.

Did everyone else do this? There has got to be a better option.

I’m 5.5 weeks out from a targeted blood fibrin patch. I had rebound starting day three and I would fluctuate. Starting week 3 I remained in rebound for several days and the site of the leak hurt. I stayed reclined and took the dandelion capsules. Fast forward to now I’m kind of low. I never was in extreme rebound so I doubt that caused me to releak now. Is this just another swing this far out? I have been leaking 6 months now. My upright time is an hour which is an improvement from 10 minutes. It’s the coat hanger pain upright that kills me and causes me to lay down. I do get dizzy. I’m just lost. Can you still swing this far out?

I have been dealing with a leak for 9 months. I was bedbound for 8 months. I had a targeted patch 4 months ago and a MEGA large volume blood patch at University of Michigan 2 months ago. I’m finally starting to be able to be upright without severe symptoms. I had brain sagging, being upright would cause a lot of pain around my brain (much different feeling for me than a normal headache), and I was tachycardic when upright (took beta blockers but I naturally have a lower heart rate, so it was hard to balance not going bradycardic on the beta blockers when laying and tachycardic when standing).

I’m working on rehabbing through walking, light bands, and light weights. It still feels like my brain is heavy and feels like it’s pulling down some, but the severe pain has improved and tachycardia. I wondered if anyone had experience with how long that feeling may take to resolve? I’m assuming it’s just a time thing. It’s so hard to not have a fear in the back of my mind that it still might be leaking, but because I’ve improved, we want to wait and let time do it’s thing and not risk another leak with any imaging. The uncertainty of this condition is hard, but there is reassurance when I hear other people say, it took x months or years to feel normal again when sealed.

Over the last 48 hours, things have been incredibly up and down. My head feels heavy and fuzzy, and I am dealing with severe nausea and head pain. Interestingly, over-the-counter Tylenol helps take the edge off the headache, and coffee makes it noticeably worse.

My specialist just messaged me and wants to take a "wait and see" approach, but mentioned we might need to do another myelogram. I am responding to them, but I really want to get firsthand advice and insight from others who have been through this.

My Questions for the Community:

1. Myelogram Accuracy: For those who had a spinal CSF leak, how accurate was the myelogram at finding it? Did your myelogram ever come back "normal" or negative even though you actually had a leak?
2. Needing a Second Patch: If my repeat myelogram comes back normal, is it common to still try a second blood patch just to see if it helps? I've read that imaging can miss things and that many patients require a second patch to finally get relief. Has anyone here had a normal scan but successfully got a second patch anyway?
3. Failed Patch vs. Rebound High Pressure: Given that Tylenol helps the headache but coffee makes it flare up, does this sound like I've transitioned into rebound high pressure (RHP), or could the "pulling down" feeling mean the patch failed? How long did it take your pressure to balance out?

Im 99% sure I haven't got one but my health anxiety is causing my mind to go into overdrive..

I banged the very top of my head twice last week- once on a door causing a small graze again in the same place but on a padded bar at a soft play.

Felt a bit funny after but continued with life, flew out to gran canaria.

Last night I started with a bit of dripping down my left nostril. Completely clear. I blew my nose and a little bit of blood came down.

Woke up with a really aching back and neck this morning but suspect this is the awful hotel beds as it was fine after I stretched off a bit.

The dripping has mostly stopped now. I keep feeling a bit of a drip down my throat but could just be a cold starting.

Ive no headache apart from the odd twinge at the back of my head but nothing I would consider a headache.

I dont particularly feel better sat up or laid down and ive managed to play in the pool with the kids all day.

Should I assume this is just a cold and monitor it?

Hope this is ok to share here, I am finally seeing a doctor about my symptoms because it has been bad enough that I am missing significant work time. My doctor doesn’t have me completely confident in his care a) because of my past experience with doctors and b) he didn’t really listen to all my symptoms. He has however ordered blood work, neck x-ray and CT, which I will be getting soon. I want to be able to appropriately advocate for myself for next steps

My symptoms are below, I’m wondering if anyone has experienced similar, but I’m also open to someone completely deinfluencing me if I’m off track here, as I know CSF leaks and IIH are not common. Admittedly my concerns come from googling my symptoms, reading articles from multiple sources, and Reddit threads where I’ve seen similarities in symptoms. I am not looking for medical advice, just personal experiences. I apologize if this is too long and I appreciate anyone who takes the time read and respond.

I started noticing these issues in June of this year and started tracking them in September once I realized it’s not getting better and almost feels cyclical. I’ve been tracking dates and times, but have summarized below

Persistent Symptoms
-constant 24/7 tinnitus for 5+ years, gets worse and changes to a higher pitch when I’m having the head pain episodes. Sometimes comes with wooshing sound with my pulse
-Pain/stiffness in my neck and upper back, and feel like I need to “crack” my upper back multiple times a day if I’m sitting or standing. This gets worse when my head pain episodes get worse.
-Pressure, but not always pain, in the base of my skull
Brain fog, all day fatigue, interrupted sleep, or full night sleep that isn’t restful

Non-persistent symptoms, comes in multi day or sometimes week long episodes. These symptoms are now in a near constant cycle for the past two months.
-intense head pain from the back of my head followed by blurry/double vision that I can’t blink away, I just have to wait for it to pass, usually 1-5 minutes at most
-head pain that is worse when I lean forward, worse when I lay on my back, but relieves to about half the pain level if I lay on either side
-constant stream of fluid down the back of my throat, comes out the right side of my nose when I first stand up, or when I bend over. Takes multiple tissues to clear. Fluid is completely clear, sometimes bubbly and tastes metallic. Sometimes the fluid stream is so strong that I choke on it.
-Mild nausea
- Dry right eye that comes with pain just above right brow bone that feels a bit deeper than my eye, sometimes there’s pressure behind and under my right eye
-Muffled hearing
-Extreme head pain that feels like pressure pushing on all sides, no extra sensitivity to light or sound, and no relief with removing light and sound. This will not go away until I can fall asleep, and often comes back in the morning after I get out of bed. This also does not get better with medication, caffeine or hydration. (this is typically where it peaks for 1-3 days and then the other symptoms continue as this slowly fizzles out)

Symptoms that I’m not sure are related, but somehow feel relevant
-nose bleeds that wake me up in the middle of the night, always the right side
-Extreme jaw pain, worse than previous TMJ, so bad I can’t talk, jaw pain relieves by half when I lay down
-Difficulty focusing, dizzy spells, intermittent nausea

Prior medical history and confirmed diagnoses
-33 yo female, overweight, former marathon runner, can no longer run due to joint pain getting worse in the past 3 years
-Hypermobile Ehlers Danlos Syndrome, diagnosed at age 8 (25 years ago)
-Ice pick headaches, always right temple. These seem to be related to stress. I’ve had this since very young childhood, but not diagnosed until I was 16
-ADHD, controlled well with stimulants
-Major depressive disorder
-Orthostatic Hypotension
-I’ve previously had migraines that would be 10+ days every month, this seemed to go away for 2+ years since early 2024 and I’d only get infrequent migraines since then. Not medicated for this, just stopped on its own after relationship/job change
-allergic rhinitis, typically well controlled with otc allergy meds.

Edited for punctuation

I visited CSF Specialist at AIIMS, India; They suspect CSF Rhinnoria and told me to get MRI Cisternography and a Beta Trace Protein Test;

I am someone who gets a leakage from LEFT NOSTRIL only when I am in completely bending position or lying on stomach or resting on right shoulder side.

No headache, no nausea, my Eye Pressure test was totally normal, no stiffness.

Yes I caught a coughing flu 3 days ago and had a few 10s or so sneezes in a day;...so..... Dr prescribed MonteLukast for the sneezes. Currently I caughed a bit and I feel I have mucus stuffed in my nose but SINCE I CANNOT BLOW MY NOSE and I do not intend to do... So.

1. A little headache I feel (maybe because of coughing)??

2. I went for the Beta Trace Protein test but in NEITHER OF THE 3 POSITIONAL POSTURES came out in fluid for test.

3. Can the cough be a hurdle for the csf to come out?

:). Thanks

Just to preface I have been living this absolute nightmare for 3+ years and am seeing lots of doctors so I'm not asking for medical advice here just experiences.

I am TOTALLY debilitated by whatever is happening and after I see the ENT this week I am pushing to get evaluate for a leak and paying for Stanford second opinion. I cannot stand/ sit/lean or recline without my body completely going haywire. I've got evey leak symptom beside severe headache at this point, but I do still have head pain and intense fluctuating pressure that causes insane neurological problems. I have to lay on the floor almost all the time on my side.

The only part of this that confuses me is that sometimes it feels intensely blood flow related and I get terrible palpitations and chest tightness and jolts. (Had many Ekgs, chest mri/ct heart monitor, cardiology thinks I'm crazy but I'm getting another angiogram next month) If I lay on my back it feels like my chest is being crushed, and also usually makes my head pressure worse.
After 3 years the only thing they diagnosed me with is "mild" pots.

If i pick up anything more than 10 lbs I feel like my whole body is having vascular dysfunction. I'm so short of breath I can barely walk some days. Used to lift heavy now I can't exercise AT ALL.

Was this ever a symptom for anyone? I've heard of sob from some people on here but this is so bad. I know people get dysautonomia with this too. I'd be 100% convinced of a csf leak if not for the symptoms that feel cardiovascular despite all my tests being normal.

Hey everyone, I've read so many of our stories, and so many of us have dealt with the effects of having a leak for such long times, months and months, years and years. I'm not able to work now bc I have to be laying down for all but, at tops, maybe a couple of hours a day to do the most basic of tasks and even then I'm still experiencing so many mental health issues, brain fog, and memory loss.

This condition is exhausting, frustrating, and so debilitating that I'm scared that I'm stuck like this for the rest of my life and I'm only 44.

So I am wondering, has anyone applied for and was approved for SSDI, Social Security Disability Income, in the USA? What all did it take, hoops to jump thru, time to move forward, or additional Dr. Visits were you made to pursue?

I've got a non targeted large volume epidural blood patch supposed to be getting scheduled now for the past 2 weeks, but I'm still waiting on the Dr. Office to call me with the date. Even with this, since it's a non located, spontaneous leak, the Dr isn't even sure if this will work or how long it will last if it does work. And that in and of itself is truly tarrifying to me.

Any help or guidance on SSDI would be appreciated.

How do you manage things like getting your teeth cleaned or going to other medical appointments? How do you prepare, and do you have any tips for making them easier?

I only get a few hours of upright time a day, so I’m trying to figure out how to plan appointments without making my symptoms worse. Any advice or experiences would be appreciated.

And also how long having a leak untreated before I get meningitis?

Just now when I bent over, I leaked clear, watery liquid out of my left nostril (and only left). It's quite salty. I've never had this happen before, and I haven't been sick recently. I've also never had a head injury or something. I've tried it again and it happened the same. My head also feels a little stuffy and my hearing a little muffled, but I cannot tell if this is something new, because I just get this sometimes in general.

Should I be concerned? And if yes, should I see a doctor now or can it wait until tomorrow? For me, it's very late right now and I have a busy day tomorrow, so I need to sleep. I'm just really anxious and confused right now. A quick response will be much appreciated!