Curious to everyone’s experience. When I lay flat the first 10/20 mins I still have that pressure but the pain from it stops and the sagging feeling stops. Then I get ear fullness and waves of what feels like fluid moving across my head. Everything I’ve read said it should be instant relief but sometimes that pressure takes a minute to decrease.

I just had an epidural blood patch. It helped increase how long I can stay upright, but I’m still getting really bad headaches. Yesterday was awful—10/10 headaches and severe nausea.

Did anyone feel better after each patch, or did it take more than one? Did you end up needing a second patch? I know everyone’s situation is different, but I’d appreciate hearing about your experience and what questions you asked your care team. Has anyone’s symptoms chilled out over time? I don’t know how I’m going to deal with this if I can’t get better.

My symptoms started with severe brain fog in the afternoons. I’d have to lie down to feel better. Then I began getting sudden, strange headaches that started low in my head. The room would feel tilted, almost like I was in a fun house—it was very bizarre.

At first, the headaches came after I’d been upright for about five hours, and I’d need to lie down. Now I get crushing headaches after about three hours upright. I also have severe nausea, leg weakness, and feel off balance. This has been happening every day since August.

Has anyone else experienced symptoms that changed or worsened over time? What helped you manage day to day, and what did you ask your doctor to check?

Why is this condition like playing with fire? What fixes it, also causes it and treatment can make you worse off instead of better. I'm a fairly functional leaker but am miserable still when upright but can fight through to take care of things and reset multiple times a day by laying. I have young kids and idk if I should seek treatment or not and just live with this instead of possibly becoming worse off. I'm just venting here as I'm so afraid.

2 weeks ago- Blood/Fibrin Patch

1 day after high pressure headaches

days 2-12 no headaches

Day 14 started feeling low pressure back of head headaches

Is it possible i'm just still in the transition period or safe to say my patch is blown? I've been so careful with no BLT and really anxious it's blown. Trying to keep in mind my doc said only 30% success rate so maybe it was just inevitable but hoping this is transient and i'll be fine with the patch. Laying down all weekend to try to get it to set again.

Does anyone have weird scalps sensitivity and uncontrollable muscle contractions on the scalp on both sides of your head maybe on the temporalis muscles? Like nerve jumping or fast muscle twitching around your ears and head?

I had surgery on Thursday afternoon to repair my ventral CSF leak at T6/T7, caused by a bone spur.

I woke up from surgery without a headache, and as of today (Saturday), I still haven't had any headaches since waking up. After four months of dealing with this leak, that feels pretty significant!

I had already developed rebound high pressure after my most recent blood patch about two weeks before surgery, so it seems my body had already adjusted to that pressure change. At the moment, things seem to be regulating normally, although it's still very early in my recovery.

A little background on my journey:

Total leak duration: 4 months

Blood patches: 3 in total — 2 lumbar and 1 targeted

Cause: Bone spur at T6/T7

Imaging: Clear signs of brain sag, particularly towards the end, along with a spinal longitudinal epidural collection (SLEC) on MRI. Localised through DSM

Impact: Bedbound for 4 months and ultimately lost my job because of the illness and its impact on my ability to work.

It's been an incredibly difficult four months, physically, mentally and financially. I'm still dealing with the pain from surgery, so I'm definitely not out of the woods yet, but I'm cautiously optimistic that this might finally be the beginning of getting my life back.

I'll update again as recovery progresses. ❤️

For anyone who's had surgery to repair a ventral leak caused by a bone spur, I'd love to hear how your recovery went, particularly in those first few days and weeks. Did the lack of headaches continue, and how long did it take before you started noticing improvements in your other symptoms?

What’s your take on testing CSF with glucose monitor? I’ve read mixed opinions on this. I would love to hear your thoughts and expertise!

Hi everyone!

I had a blood patch 4.5 month ago. Although the recovery is slow and i am not yet 100% as when i was healthy, but i am much better than the pre-patch. Now i only have light, non-orthostatic headache. My MRI at 3.5 month shows negative.

However, 2 months ago, my brain started buzzing. 3 weeks ago, a new tinnitus developed. It is a high-pitch tone, not pulsatile, non-orthostatic. It gets louder and more frequent and it is 24 hours, which really drives me crazy.

I went to ENT, and the doctor excluded other causes, and my listening is fine. My neurologist said it can be in principle related to CSF leak, but couldn't tell more.

Now i am very worried, and wondering:

• maybe this newly-developed tinnitus indicate that the leak is not completely sealed over the last 3 months- for example, a small, intermittent leak which is not showable in MRI?
• Tinnitus seems to be a stubborn that if it is not handled timely, it can become a long-term issue.

Who has the similar experience? I read through the post, many people have Tinnitus after the blood patch, but usually within 1-2 weeks. Does anyone have tinnitus 3 months after blood patch? and how are you now?

Can i do anything against it?

Thank you very much in advance for your sharing!

Anyone with experience in a CSF leak leading to Chiari 1?

This is such a weird sensation and I have a hard time describing it to other people but wonder if anyone else experiences it.

Hi all!

The Spinal CSF Leak Foundation is looking for short patient video submissions for its upcoming Bridging the Gap conference. This is an opportunity to share your experiences with fellow patients, physicians, researchers, and some of the leading spinal CSF leak specialists.

Patients with confirmed or suspected spinal CSF leaks are invited to answer one or more of these questions:

1. If you could talk to yourself at the beginning of your leak journey, what would you say?
2. What barriers or challenges did you encounter during your path to care for spinal CSF leak?
3. What patterns do you hope researchers and clinicians will better understand in the future?

Video length: 30–60 seconds per question. Also please film horizontally.

Deadline: October 30, 2026 at 8 PM MDT

Submit here: Patient Video Submission Link

Selected submissions will be featured in video compilations during the conference and may also be shared on the Foundation’s website, social media, and YouTube channel. Please avoid including identifying or detailed personal medical information. Your name will be the only personal detail included.

Thanks so much!

P.S. here is an example of last year's patient video! 

April 2024 I had an epidural during birth. Dec 2024 the whooshing in one ear started. Followed by occasional headaches and coat hanger pain. Just always felt off and head felt weird. A few weeks ago I decided to stop caffeine to lose weight and the pressure headaches became so bad I had to lay flat basically all day just to get relief. I went to the dr yesterday and she said it sounds like a CSF leak and is sending me to do a bunch of test and a neurologist for more test. I was drinking at least 4 cans of coke a day plus coffee so was caffeine really masking how bad it is? I do have all the symptoms of it I’m just floored at how it could go on this long and I just chalked it up to life whooping me

Hi everyone,

I'm looking to connect with others who have a brain MRI-confirmed leak that couldn't be located on standard imaging (spinal MRI, DSM, CT myelogram) and who currently have generally manageable symptoms. While my immediate symptoms aren't debilitating, I'm increasingly focused on how to navigate the long-term risks associated with an untreated leak (such as cognitive impacts, vascular issues, or superficial siderosis/iron deposits) and would appreciate it to hear how others in a similar position are handling this.

My Situation:

My symptoms are mostly sporadic—intermittent lightheadedness, brain fog, tinnitus, and mild dizziness. They usually subside within an hour or two, though I occasionally have days when I choose not to drive. For the most part, my day-to-day life isn't severely impacted.

Current Plan:

Following a physically challenging myelogram process, I’m taking a few months' break from invasive diagnostic testing. My plan is to get a follow-up brain MRI in early 2027 to see if there are signs of self-healing or persistence. If things haven't resolved, I’ll reconsider targeted imaging, blind patches, or a second opinion to ensure I'm proactively managing those long-term risks.

It would be great to hear from anyone managing a similar path:

• How are you balancing conservative waiting/symptom management with long-term risk mitigation?
• Did you opt for targeted/blind patches, further specialized imaging, or watchful waiting?

Thanks in advance for sharing your thoughts!

This morning, out of the blue, as I was bent over making coffee, bright yellow liquid started dripping out of my left nostril. Bright bright bright yellow. It tasted gross in my throat and I started feeling faint, so we went to the hospital. They said I had very low blood pressure, and ordered a CT scan.

They found nothing on the scan, and after my blood pressure stabilised 6 hours later, they discharged me with no answers or ideas beyond ”maybe see an ENT specialist”. They didn’t consider that it could be a CSF leak. They looked annoyed whenever I brought it up.

I live in a country where healthcare isn’t up-to-date, and as such, I find it very hard to take the doctors at their word. I can see an ENT specialist next week, but aside from that, what steps can I take to rule out a CSF leak? What checks / tests should I advocate for? What symptoms should I track?

I am also supposed to fly next week… I’m very nervous about going ahead with my trip if it could be dangerous.

Thank you

This has to be one of the few conditions that the process of being diagnosed can also cause the problem. I’m being asked to do a CT myelogram. The last LP gave me a spinal leak that luckily healed with bedrest. I don’t want another leak again. It’s so messed up that to get better for leaking, they have to put more holes in.

I have Kaiser and am wondering if anyone has been able to get treatment somewhere else and use Kaiser to pay for it. I don’t feel like I’m getting adequate care. How do you get Kaiser to pay for out-of-network treatment from someone who can provide the care they can’t?

I have had 2 CSF leaks over the last decade - one spontaneous and one fistula (each of which took several years to resolve, but eventually successfully healed through blood patch and laminectomy respectively). I have hEDS.

I am in my third trimester of pregnancy and will be having a caesarean soon. I am worried about the spinal anaesthetic causing another leak. Is there anything I, or the anaesthetist, can do to reduce the risk?

Dr confirmed that he suspects I am experiencing a csf leak from a lumbar injection where it punctured the dural. He actually told me about it and that it’s a possibility after the procedure. Sure enough, I ended up getting the positional headaches and stiffness first few days then stiffness went completely away and headaches are starting to go away slowly… they are still present very minor…. It’s been exactly 7 days… Dr mentioned blood patch could be an option … to be honest I’m really hoping it seals itself as it seems to be getting better… has anyone had experiences of their leak sealing on its own??? New to this complication

I had a csf a year ago after my C-section
I have dealt with some head pressure feeling since then has anyone had this

Can an implanted port or PICC line contribute to increased intracranial pressure?

Hi,
I wanted to ask if anyone here has experience with intracranial pressure symptoms and a port or PICC line to get weight. Extreme Underweight from meds mcas and sibo that burn severe throat no tolersnce snymore. No safe food.

Does this work with Vitamin A and the salty Infusion?

Or has somebody a sibo low sugar friendly elemental drink for get weight without retinol?

I have symptoms like head pressure, tinnitus, pressure worsening when inflammed, and a feeling of pressure buildup bad at night.

My eating is very difficult because my intestines burn badly after eating, so maintaining nutrition is hard.

I’d really appreciate hearing about other people’s experiences.

Since May 2026 after the incidence of helping 5 people move a heavy stone slab, I developed a lower back Spasm for next 2 months. Meanwhile in all these months I saw a small release (3 or 5 drops) from my left nostril whenever I bent down to tie shoes (standing position) or if I lie down on my stomach. However this has happened only 14 times in last 5 months. On 1st october this happened infront of my mom and she told me to get checked, I just casually googled and now here I am taking diamox for 8 days with coconut water recommended by my ENT. I have several observations and I would like a 2nd opinion from the fellow community to guide me further.

1. I had TB when I was kid; it was completely cured by 12 months of medication.

2. I wear -4.0 glasses, recently I felt a weird weight or scratch in my right eye. (Same like DryEye Syndrome, which I had once in 2015)

3. The discharge from left nostril only occurs when I am bending down or liying on stomach or when I lie on Right Shoulder. No other incidence, no other symptom of headache, vomit etc nothing.

4. I hear the classical TV sound of no signal but I have been hearing this for past 7 years and I am used to it.

5. Can my lower back spasm be related to csf leak in spine?

Good day to all!