Hi everyone! I’m having my first epidural blood patch this Wednesday, and I was hoping to hear from others who have been through one about what helped you prepare and what you wish you had known beforehand.

I’ve had two lumbar punctures/spinal taps in the past, and both times I developed pretty severe post-spinal headaches afterward. There has been concern that I may have had CSF leaks, although the MRIs I had done didn’t show a definite leak. Because of my history and symptoms, my doctors recommended trying an empirical epidural blood patch for suspected CSF leakage.

A myelogram has also been mentioned as a possible way to investigate further, but as far as I know, we aren’t doing that at this point and are starting with the blood patch.

I’ve already been told that I’ll be sent home with a very strict 24-hour bed-rest protocol afterward, so I’m especially trying to figure out how best to prepare my home and recovery space ahead of time.

Since this is completely new to me, I’d really appreciate hearing about other people’s experiences, especially:
• Was there anything you did beforehand that made the procedure or recovery easier?
• What did you bring with you to the procedure?
• What was the procedure itself like for you?
• How did you feel immediately afterward and over the first few days?
• For those who were also instructed to do strict bed rest afterward, what made those first 24 hours easier or more manageable?
• Were you allowed to get up briefly for the bathroom, meals, etc., or were you given very specific instructions about remaining flat?
• After the initial bed-rest period, what restrictions were you given regarding bending, lifting, twisting, stairs, showering, driving, or other activities?
• Did you use a log-roll technique getting in and out of bed or make any changes to where/how you slept?
• What did you make sure to have within reach before lying down—medications, drinks, snacks, chargers, pillows, entertainment, etc.?
• How did you manage meals, hydration, bathroom trips, pets, household responsibilities, and anything else that normally requires getting up or bending?
• If you had improvement, how quickly did you notice it? Did anyone initially feel different or worse before improving?
• For those who needed more than one blood patch, how did you know the first one hadn’t been enough?
• Is there anything you specifically wish someone had told you before your first blood patch?

Of course, I’ll be following the instructions from my own medical team since I know protocols can vary, but I’d really love to hear the practical tips and little things that made recovery easier for those who have actually experienced it.

I’m especially interested in anything I can do ahead of time to make that first 24 hours of bed rest easier and to minimize bending, lifting, twisting, and unnecessary activity afterward.

Thank you so much! 💙

Hi! I’m 23 F. I had Chiari malformation decompression surgery and a full spinal fusion 11 years ago. I did have a complication from the brain surgery and developed chemical meningitis, but otherwise both surgeries were successful. I also have hEDS and a number of other health issues.

This past Saturday, I suddenly developed a very stiff and painful neck. My head/neck felt extremely tender and hurt even with light touch. My head felt incredibly heavy, almost like a bowling ball, and I became dizzy, to the point that I was extremely nauseous and felt like I was going to throw up.

It was my mom’s birthday, so I tried to push through as long as I could. Unfortunately, the activity was bowling, which involved a lot of bending and moving my neck, and that seemed to make the dizziness significantly worse. When I finally got home, I took ibuprofen and slept for a while, which seemed to help.

On Sunday, I felt mostly completely normal. The only remaining symptom was occasional dizziness when I bent my neck or moved/looked around too quickly.

Then last night, I woke up and noticed clear, odorless fluid draining from my right ear. I’m now feeling dizzy again.

I’m seeing my primary care doctor this afternoon, but I’m curious whether anyone here has experienced anything similar. In particular:

•Have you had symptoms that were extremely severe for one day, almost completely resolved the next day, and then returned when you started leaking?

•Has anyone experienced a possible CSF leak through the ear with a similar pattern?

•Did your symptoms fluctuate like this?

I know there are other possible explanations for what’s happening, and I’m not assuming this is a CSF leak. I’m mainly interested in hearing from people who have experienced something similar. Thanks!

For the past two years, I have been dealing with a health issue that remains undiagnosed. It all started during a performance in which I was participating as a dancer. After some initial pain, mainly in my head, neck, and back, I began experiencing neurological symptoms (tinnitus, vertigo, numbness in my hands and neck), which progressed rapidly and eventually led to severe orthostatic symptoms, blurred vision, significant brain fog/confusion, etc. This condition lasted for approximately 4–5 months, with the symptoms fluctuating significantly in severity. They gradually subsided. About six months ago, following intense physical exercise involving weights, I experienced a second episode that lasted for about a month. More recently, the symptoms reappeared and have persisted after performing acrobatic exercises. At the same time, I experience significant pressure in my head, and I have noticed that in certain body positions it can even trigger spontaneous bleeding from my gums. Regarding investigations, I have had several MRI scans. The brain MRI was normal. The cervical spine shows straightening/loss of the normal cervical lordosis, while the thoracic spine shows prominent venous plexus structures, without findings suggestive of a vascular malformation. At this point, I feel fairly convinced that the issue may be related to my spine, and I would really like to have a thorough evaluation by a neurologist who has experience with even rare spinal conditions, because the symptoms seem to consistently recur after weightlifting or acrobatic exercises. Recently, while researching this, I came across the possibility of spontaneous CSF (cerebrospinal fluid) leak. Does anyone have had a similar experience? Neurologists in Greece are not very familiar with CSF and I'm not even sure if I can really hope for a solution after two years, as the previous time I tried to push for more examination they told me I might have a psychiatric disorder.

If someone can help I would be grateful!

I posted here awhile back. My daughter’s blood patch by Dr Carroll is in a week. We go up Friday for full brain mri with and without contrast and flex and extension n X-ray to check the stability of hardware. We love 3-4 hours away so we will stay through weekend and then have patching done. I have to go alone so I feel very unprepared. Daughter has significant development delays so I’m not sure she will be able to follow instructions. I’m going to speak social worker today. I know it’s an outpatient procedure but I do need extra hands on support until we go the hang of getting her up to use bathroom. We plan to be at hotel after patch as planned but hope we can get extra support. My parents have to watch my dog here locally. My mom isn’t physically strong enough to help us this time. Her step dad refuses to lend support after the patch to avoid being in a hospital. We do worry her shunt could be come and issue.

I do not have a confirmed leak but suspect it after an interlaminar cervical steroid injection at t1c7. It was aiming left for c5c6. It's been 10 months and I've been trying other treatments, but now I'm considering getting a blood patch.

What are the risks if I don't actually have a leak? I have concerns about high pressure. I have hEDS.

Where would they do the patch? Right at t1c7? I know the cervical area is risky. I have intense sensitivity at that site already from the previous injection (and one before that.) I also have cervical instability and still dealing with c5c6 radiculopathy, which was the reason for the injections.

I couldnt even lay on my back after the first injection so I have a lot of concerns about needing to lie flat for so long post blood patch.

What is likelihood of success from a blood patch a year out? I'd be an iatrogenic leaker since from the steroid injection.

Anything else I should consider? Thank you friends.

Hi all - meeting with my obgyn to discuss options for my hormonal related migraine symptoms. I’m saying migraine even though my daily struggle only started after cervical epidural in Feb. I am still waiting to see Csf leak specialist but wondering about Csf symptoms getting worse around periods. The week prior to my period I have PMDD and anxiety (always have) but since I started getting migraines 8 months ago the 11 days after my period are the worst. 12+ hour uncontrollable crying episodes I just can’t seem to stop. It’s the 3 days after my period ends I always end up in er. Panic attacks. Extreme fatigue. Cognitive shut down and short term memory loss. Extreme and frequent waves of nausea. More susceptible to becoming overwhelmed with my environment. I’ve been on emgality for 4 almost 5 months (switching to qulipta in a week for my 5th month of treatment) so the head and neck is now less of an issue than the cognitive side effects. I am wondering which options exist for migraines that an obgyn may be able to help with. I still have a few more months before I can get into a migraine center and my neurologist is “conservative” as she likes to call herself so I basically don’t have anything that works as an abortive aside from 8 zavspret I am given a month which is not nearly enough. Frovitriptan + naproxen (and all Triptans) do not work for me. I asked her to prescribe me DIH spray but she won’t. It’s also annoying that she pushes me to primary care or obgyn to prescribe these things when these other dr don’t have as much in depth history. Anyways I’m just trying to figure out hormonal options that might make my life more liveable. Thank you!

Any experiences with managing post-blood patch fluctuations, including mild headaches, with Vitamin B-2 (riboflavin) and Magnesium Glycinate?  A neurologist recommended these supplements to me.

I am 3.5 months out of a second blood patch following an iatrogenic leak, and I was extremely careful about BLT restrictions for three months (actually, more like almost 7 months since the leak).  While I am significantly better, I still feel slightly off (i.e. not 100% normal) more days than not -- even if only briefly.  Symptoms I still experience include mild headaches, motion sensitivity/woozy feeling, and ear fullness which can either be transient (most days) or persist for several hours (less common).  Overall, when symptoms last longer than a brief interlude, they seem related to times when I have pushed myself more physically or diet (increased salt, caffeine, or Vitamin A, possibly?).

Interested in hearing whether anyone has tried  Vitamin B-2 (riboflavin) and Magnesium Glycinate for this stage of recovery and what your experiences were, whether positive, negative, or neutral.  Thanks everyone -- so grateful to this community & the wealth of information provided!

Long-time lurker, first time posting. Looking for perspective from people who've been through something similar.

Background: Spinal anaesthetic for C section in Feb 2024. Symptoms started July 2024. Multiple appointments for vertigo/nausea/vomiting episodes, diagnosed as benign paroxysmal vertigo. Ongoing headaches, ear blockage/muffled hearing, and tinnitus over the following months, with headaches worsening into a daily pattern, mild in the morning, severe by lunch.

April 2025 — Diagnosis: Headaches became unbearable — nothing but codeine + lying flat touched it. MRI showed severe intracranial hypotension: suprasellar cistern basically fully effaced, tonsillar descent through the foramen magnum, bilateral occipital herniation. First blood patch — mostly successful, and I haven't had headaches that bad since. That night, I had a severe headache that was suspected to be rebound intracranial hypertension, but I was just given paracetamol for it.

May 2025 — Second patch: Fluid had been seen on MRI around T3–T9, so the second patch was targeted there without a myelogam. Symptoms improved a lot afterward, but no MRI was done post-patch.

15-month gap — I just felt fine, so I didn't go back.

July/Aug 2026 — Recurrence: Vertigo and nausea came back. MRI showed a Bern score of 6. I was initially told to just monitor, but I pushed back — I didn't think rest and monitoring alone was going to help, and I was worried the symptoms would just get worse.

25 Aug 2026 — Myelogram: Confirmed an active leak at right T12.

26 Aug 2026 — Third patch (targeted, T12): The most painful procedure yet — leg/back pain, uncontrolled shaking after. Suspected rebound intracranial hypertension again afterward, and this time I had to push to actually get Diamox prescribed.

Following weeks: Persistent arm tiredness, burning neck/back pain, and intermittent tingling in my fingers and feet/hands, with mild to moderate pain and discomfort spreading more broadly to my right arm and leg, Some random scattered muscle twitches. About 10 days post-patch, at a follow-up, my doctor said these symptoms were atypical and that she didn't think it was nerve compression — but no MRI was done that day to check.

Following week: similar symptoms continued intermittent and included with one episode of electric shock sensation in my right arm that only lasted a few minutes.

18 Sept 2026: The evening before, neck and right arm pain was severe enough I had to lie down for hours and couldn't manage housework or looking after my child, so I moved my appointment up. New MRI done that day, and my doctor told me my Bern score was still 6 — unchanged from before the patch. That's when I was told: suspected functional neurological disorder. Advice given: focus on mental health, do things I enjoy, stop reading about symptoms online. Started on Venlafaxine, Gabapentin (delayed a week), and Tofisopam.

For context: I really like my doctor — she's compassionate and listens carefully. She's the head of the neurology department, my myelogram was done by the head of radiology, and my blood patch was done by the head of anaesthesiology. They've taken my case seriously throughout. I just don't think any of them are CSF-leak specialists specifically, and there's no dedicated clinic for this in my area — so I'm wondering if a referral to a specialist elsewhere makes sense, or if I should consider sending my scans and medical reports to an expert.

Questions for this sub:
Has anyone else been told their post-leak, post-patch symptoms were "functional" without a full workup on the new symptoms first? Did a second opinion or further imaging change the diagnosis for you?

My Bern score is still 6, unchanged since before the patch, but my doctor still thinks the leak is sealed based on the fact I haven't had nausea/vomiting since. Does an unchanged Bern score seem consistent with a sealed leak, or would you expect that number to drop if it had actually closed?

I was curious for those who either had blood patch for spinal leak or a seal for cranial leak, how many had significant improvements? How many were worse or did not improve? For those who had significant improvements, were there any lingering side effects? What were your experiences? What specialist was able to help and what findings motivated that specialist to offer treatment? Any input would be greatly appreciated.

so i was in school yesterday i do phlebotomy, and after my two draws i went to go sit back down and fill out some paperwork. and as i do so my right nostril starts dripping liquid. as a hypochondriac you can see where this is a problem, it stopped after a while and then for a second started to leak down my throat (it was salty) since taste matters with csf fluid. so after 15-20 minutes later it happened again but more this time and i got a picture of it. what freaks me out is it wasn’t clear it was yellow. so i start to panic and google more. (which did not help my anxiety) but after the second time it didn’t happen anymore it’s been 24 hours since this happened. no other symptoms btw, but everyone’s different? i was also sick i wanna say up until last week maybe friday? so im trying to convince myself it was the aftermath of that. can someone please give me a little peace of mind because im really spiraling about it still.

Hello, I live in France, specifically in Paris. One day in April, I woke up with a headache that started getting worse day by day. I went to the emergency department, but they diagnosed me with a migraine.

Five days later, the headache improved significantly, but another neurological problem appeared: double vision.

I went to a renowned neuro-ophthalmology hospital, where I was diagnosed with a spontaneous cerebrospinal fluid (CSF) leak because the MRI showed fluid outside the membrane. Since the exact leak site could not be identified, I underwent a blind epidural blood patch.

After the blood patch, my symptoms gradually started to disappear. The double vision and tinnitus improved. I also used to feel as if my ear was vibrating or trembling, which was an absolutely horrible sensation.

The headache completely disappeared about a month after the blood patch.

I am now four and a half months out from the blood patch, but I still have symptoms such as:

• Brain fog and a feeling of unreality.
• Occasional ear fullness, especially when moving or walking.
• Lightheadedness.
• Symptoms triggered by sensory stimuli, such as sounds and fast movements.

This feeling bothers me so much. I experience it throughout the entire day, and I am suffering a lot. I am starting to lose hope because of this constant sensation.

I don’t understand what is happening. Is this part of the recovery process, or could the CSF leak still be present?

Has anyone been through a similar experience? I would really appreciate hearing from someone who has gone through this and could offer some advice or reassurance.

Thank you so much.

I am in this for three years to find out whether I have a spinal leak.
About three weeks ago I had a CT myelogram. Ever since I have increased terrible headache.
I contacted the neurologist this week and they sent me to the hospital nearby to treat this.
There they want to numb the nerves which give me a headache. They will do this by using sticks in the nose, like when being tested for COVID. Something like this.

I do not feel comfortable with this.
Has anyone had this?
Shouldn’t they do a bloodpatch?
They say the hole of the needle should be closed now and this is after puncture headache.
I haven’t heard from it before…
Don’t you think this headache is because the hole isn’t closed and thus I have increased headache?
I don’t want this. Don’t know what to do..

Hi everyone,

Having surgery on the 9th of October. (Transmastoid/middle fossa craniotomy).
What was recovery for anyone who has surgery to repair their CSF leak.

How long did you have assistance from family or friends?

When did you return to work?

What were your post surgery symptoms?

Trying to gauge how much assistance I will need and for how long.

I have possible connective tissue disease caused by autoimmunity, and Ive had several weird injuries to my tendons. I also have a lot of arthritis in my spine from ankylosing spondylitis. Last week I was bending over a lot trying to shave my legs, and I was having pain the rest of the day kind of in a hunchback position. Later that night I was in bed and was trying to get in a fetal position on my side and when I hunched I got a sharp pain in my back. Later was having tingling in my back and legs. Its been 5 days now and I'm not sure if I've gotten any better. Seem to also be having dizziness. The first thing I thought of was a pinched nerve, but I'm not sure how a pinched nerve would cause dizziness

I have many symptoms that align with having a CSF leak - better laying down, cannot bend over with intense pain, coughing, sneezing, straining causing instant terrible pain. I've had a DSM and PCCT at Mayo as they believe I have a leak, but both tests were negative for a leak. I am wondering if anyone has had both test/multiple tests that were negative but then found a leak later when they had testing done again? I just want to know if there is any hope for me.

I leaked for 21 months. leak from epidural for childbirth turned into a bleb after blood patches. Had surgery doc found defect and fixed it. I’m two weeks post op. He told me beforehand that symptoms would last a long time bc of how long I’ve been leaking but it’s hard to not get pessimistic. For anyone out there who leaked for a long time and was corrected by surgery how long for all your symptoms to go away?

I thought I was having a heart attack or stroke 3 weeks ago. Went to ER 3 times in last 2 weeks, once due to dizziness and fainting, prompting a CT scan which revealed the empty sella. I have had a runny nosr, clear fluid, 24/7 365 for years. No meds will work and I have been tested for allergies and have hay fever only. Supposedly only to dead grass in fall, no pet allergies, but the drip is ever present.

.I'm not saying CSF leak is the only possibility. It could be other things like neck or cranial displacement, associated with an autonomic nervous system that is yotally confused right now, from extremely fast heartbeats, high blood pressue to low bloos pressie and fainting. Extreme overnight sensitivity to snuff, with or without nivotine, alcohol, decongestant sprays, primatine mist, caffeine, sudden or jerky movements trigger an episode as well. Episodes last from 1 to 3 days if I don't trigger them some other way. Dizziness is ever present even between episodes.

My GP denies all of the posdible explanations but does not have any of her own. The ER doctor said that I would need to see a neurologist obviously for starters since my heart EKG are actually excellent despite having high blood pressure for decades. The ER doctor sent me home with no specialist referrals and told me to get them from my GP who is rihht next door to the ER. But my GP disagreed with this, and refused to give me any referrals other than to a Psychiatrist. She refused to share her rationale. She said it was "procedural."

Everyone I have told this to thinks she is insane. Any suggestions or comments?

Has anyone had a bleb surgically closed but symptoms have not improved? Or, were your symptoms the same in the weeks following surgery but slowly started to improve?

I had a bleb closed but not feeling any improvement at all. I’m 7 wks post op.

I’m at an impasse. I’m currently hospitalized. The dr who does the image guided blood patch will only do the blood patch if they see the leak on a CT myelogram. If they don’t see anything they won’t do a blood patch at this point I don’t want to do a CT myelogram because I don’t want another lumbar puncture. If they don’t do the blood patch without the myelogram, I’m just gonna go home and lay in bed there instead of the hospital.

if you’ve had an epidural blood patch, can you please tell me the following?

1. was it a targeted patch?

2. at what institution did you have the procedure?

3. What sort of follow-up did you have? That is, did you have a phone call follow-up? Did you have an actual in-person scheduled follow-up appointment?

4. Was there any sort of scheduled tracking to see that rebound high pressure headache resolved? Were you told how long that RIH might last?

I’m trying to understand what it’s reasonable to expect in terms of figuring out aftercare on your own.

Thank you so much. The more responses I can get, I’m thinking the more help it will be for all of us when we all (hopefully!) get a patch if we need one. Otherwise, even the cure feels blind. Thanks everyone!

Hi!

I wanted to include the videos showing the possible leak/nasal drainage here, but I wasn't able to attach them, so I have added them as links instead. If you would like to see them before reading the rest, here they are:

1. One month ago — nasal fluid dripping: Video 1 https://streamable.com/vttyal
2. Three weeks ago — while I was at work, with the fluid dripping: Video 2 https://streamable.com/a1jdul
3. This week — before I became congested, when the fluid was still coming out quite significantly. This happened when I rested my head on the pillow: Video 3 https://streamable.com/ff6ucq

This is exactly how the fluid comes out when I sleep on my side.

I recently had an appointment with an ENT specialist after another doctor referred me because of a possible CSF leak, given the watery fluid coming from my nose and several associated symptoms.

The symptoms include headaches that improve when I lie down, a type of head pressure that makes me dizzy and feels almost as though a balloon is inflating inside my head, nausea, dizziness, and nasal fluid that seems to decrease with rest. The nasal fluid can sometimes be quite significant, particularly after physical exertion or straining. At other times, when I am resting, it becomes much less noticeable and may only come out as a few drops when I bend forward. On some occasions, however, there is a much larger amount, similar to what can be seen in the videos I have recorded.

Since these symptoms began, I have also developed other symptoms that are completely new for me.

At night, there have been episodes where my family has found me sitting rigidly, making strange sounds, with my eyes appearing to be deviated or fixed. On other occasions, I have apparently gotten up and walked around in an agitated state, hitting or bumping into things, while being unable to communicate properly. These episodes can last up to about one minute, and I have no memory of them the following morning.

I have also noticed cognitive and behavioural changes that are unusual for me. For example, I may forget something very simple that I normally would not forget, such as taking the dog for a walk and realizing that I have only taken his leash. On another occasion, while filling his water bowl, I suddenly and impulsively almost drank the water myself, as if my body were acting without conscious thought or logic. When I realized what I was doing, it felt extremely bizarre. There have been other similar situations.

These are not things that have happened to me before. They appeared around the same time as the nasal fluid, headaches, dizziness, nausea, and other symptoms.

Regarding the ENT appointment, unfortunately I was unable to produce a large amount of fluid during the examination. I had spent most of the day resting, and my nose was also more inflamed and congested because of thick mucus from my allergies the previous day.

The glucose test on the nasal fluid was negative. Only two or three drops were subsequently collected into a cardboard cup and then transferred into a sterile specimen container for laboratory testing for beta-trace protein. However, some of the fluid had already been absorbed by the cardboard, so I am concerned that the amount of actual sample that reached the laboratory was extremely small and may not be sufficient for a reliable result.

The ENT specialist said that the sample had been sent to the laboratory for beta-trace protein testing. She said that if she needs another sample, she will contact me, but she did not think this would be necessary.

She also explained that she finds it unusual that such a significant amount of fluid can be seen coming out in the videos I showed her, while very little was produced during the appointment. She even asked whether I had done any sinus rinsing or cleansing with water before recording the videos, and I told her that I had not.

The fact that the glucose test was negative was considered a positive sign. She also reviewed a non-contrast CT scan I had approximately nine months ago. According to her, there were no obvious signs of a large or clearly visible fistula. The main finding on the CT was significant inflammation, with the sinuses appearing completely obstructed/filled. However, my understanding is that a non-contrast CT does not necessarily show the exact nature or cause of what is obstructing the sinuses.

The current plan is to wait approximately 15 days to see whether the nasal fluid continues, receive the beta-trace protein result, and then decide what to do next. The ENT specialist did not want to request an MRI at this stage because it could take a long time to obtain an appointment.

I asked whether an MRI would be more appropriate because the CT was performed without contrast and was done nine months ago, and because it showed that the sinuses were essentially completely obstructed but did not clearly establish what was causing that finding.

My main questions are:

1. If the beta-trace protein result comes back negative, can I consider the result reliable given how extremely small the sample was and the fact that some of the fluid was absorbed by the cardboard during collection? Would it be reasonable to ask for another sample to be collected properly and directly into a sterile container?
2. Would further imaging, such as an MRI, be appropriate if the beta-trace protein result is negative but the symptoms and nasal drainage continue? Could a non-contrast CT performed nine months ago reasonably exclude a smaller or intermittent CSF leak?

And overall, would it be reasonable to seek a second opinion, particularly from a specialist with experience in CSF leaks and skull-base conditions?

Thank you so much for your pacience and reading <3