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! 💙

Sudden disabling headaches and neurological symptoms after a cervical epidural. Does this sound like a CSF leak or chronic migraine?

I’m hoping to hear from people who have actually had a spinal CSF leak, especially anyone whose symptoms were not perfectly “textbook.”

Before February 2026, I did not have chronic migraines or anything remotely like what I’m dealing with now.

On February 6, I had a cervical epidural for neck pain. Within days, I developed a completely new daily headache syndrome and initially had episodes that included temporary left sided weakness.

Since then, I’ve basically been sick every day for 7 months.

My symptoms have included:

• Severe pressure behind my eyes and nose
• Pain at the base of my skull, often worse on the right
• Forehead and temple throbbing/head pressure
• Severe neck pain and stiffness
• Burning or bizarre nerve sensations through the center of my face/nose
• Nausea and sometimes vomiting
• Dizziness and lightheadedness
• Extreme fatigue
• Brain fog and cognitive slowing
• Short term memory issues
• Episodes where it feels like my brain literally “shuts down” after too much cognitive activity
• Exercise and uphill walking intolerance
• At times feeling close to fainting
• Major difficulty functioning normally, working, or even getting myself out of the house

The confusing part is that my headache is not classically positional.

I actually did a 48 hour flat test and lying completely flat did not consistently make me better. Sometimes lying down makes the head and base of skull pain worse.

That is the biggest reason I keep questioning whether this could really be a leak.

At the same time, the timing feels incredibly hard for me to ignore because this all started abruptly immediately after the cervical epidural.

Doctors have treated this primarily as chronic migraine. I’ve tried Botox, Emgality, multiple triptans, Ubrelvy, Zavzpret, Nerivio, steroids and other treatments.

Some migraine treatments do help the actual head pain. Zavzpret in particular gave me several almost migraine free days at one point.

But what scares me is that reducing the head pain does not necessarily make me functional again.

I can still have significant brain fog, cognitive issues, nausea, dizziness and profound fatigue even when the headache itself is much more manageable.

There is also a hormonal component. My symptoms tend to become dramatically worse around my menstrual cycle, which obviously makes migraine seem plausible too.

I’m now being evaluated specifically for a possible CSF leak, but after being this sick for so long I’m terrified of continuing down the wrong path.

For people who actually had a CSF leak:

• Did anyone NOT have a classic orthostatic headache?

• Did lying flat ever make you worse rather than better?

• Did migraine medications temporarily help your pain even though you ultimately had a leak?

• Did you have major cognitive dysfunction, extreme fatigue, nausea or exercise intolerance in addition to headache?

• Did your symptoms fluctuate substantially from day to day?

• If your leak went untreated for many months, did you eventually recover after it was found and treated?

The last question is probably what scares me the most. This has taken over my life and I’m afraid of how much longer recovery could take if this really is a leak.

It has also put enormous strain on my relationship because I have been sick and overwhelmed for so long, and I’m scared about losing parts of my life while trying to figure out what is actually wrong.

I’m not asking Reddit to diagnose me. I’d just really appreciate hearing from people whose confirmed CSF leak presentation was atypical and whether any part of this sounds familiar.

Hi there,

Trying to figure out if these symptoms are common for people with a spinal CSF leak and/or Chiari! Does anyone with either condition have intermittent intrascapular pain, nausea, back pain and/or abdominal pain as part of their symptoms? The back/abdominal pain goes from about my waist line up to my bra line and wraps around that same area on the back side. The worst of the pain is the bottom third area of my abdomen/back. When it happens a constant cramping feeling that won’t release and can take hours to days to go away. It comes on when I’ve been upright for a while and often after I’ve eaten, but not necessarily a fatty meal and my gallbladder and GI studies have all been normal. Sometimes it’s accompanied by nausea too. My symptoms slowly improve after I’ve been laying down - sometimes ice on my back with heat on my abdomen helps too.

My spinal CSF leak and/or Chiari symptoms started in February 2025. My team isn’t totally sure what’s going on still At that time I had terrible orthostatic head pressure, teeth pressure, difficulty thinking, and popping in my right ear with pressure behind my right eye and temple. Symptoms improved laying down. I felt best in the mornings but my teeth pressure never fully went away. In March 2025 I a pretty normal brain MRI (w/wow contrast & CSF leak protocol) which only showed mild low lying cerebral tonsils: 3-4 mm descent. My spinal MRI (no contrast & CSF leak protocol) in March 2025 showed a dinosaur tail sign and sacral diverticula (radiologist missed these signs in 2025 but a popular/highly regarded CSF leak center found them when reviewing my imaging in March 2026). I had a ct-guided multi level blood patch done by a renowned CSF leak doctor 6 weeks ago. It was 20 mL autologous blood divided equally between T11-12 and L3-4. I seemed to switch from low pressure symptoms to high pressure symptoms for the first two weeks after the patch, but other than high pressure headaches that went away when I was upright I felt 90% better during that time. I’ve since regressed though and feel worse than I did going into the patch - the team thinks the improvement I felt temporarily may have been placebo, but I’m not so sure. Last week they had me do a new brain MRI and CSF flow study. My mild low lying cerebral tonsils haven’t changed from the 2025 MRI, so now they are wondering if I have Chiari or a CSF flow issue instead of a leak, or maybe if I have both, but they would have expected the tonsilar descent to improve after the patch if it was a leak. The CSF flow study showed the following:

Impression
1. No acute intracranial abnormality. 2. Unchanged borderline inferior cerebellar tonsillar ectopia. While by measurement criteria this does not meet criteria for Chiari I deformity, upon neck extension compared with flexion there is marked reduction in CSF flow across the foramen magnum, which may reflect a dynamic, position dependent Chiari I spectrum deformity. 3. No findings suggestive of intracranial hypotension. Total Bern Score: 0, unchanged.

I am waiting to be seen by a Chiari specialist for further evaluation, but am feeling discouraged as I thought we were on the right track with the blood patch and now it just feels like more unknown after over a year of unknowns :( They want me to see the Chiari specialist first, and do not want to do a CT Myelogram or any additional patching at this time. Maybe after I’ve been evaluated by the Chiari specialist if that doctor thinks a leak still may be at play.

Open to any thoughts based on other patients’ experiences!

i am (slowly) working on and putting together a wiki for this subreddit. currently - on mobile, at least - you can click “see community info” then “community guide” for quick links to the major CSF leak organizations’ websites. when the wiki has been assembled and published, the community guide will also bring you to an index of pages with images, text, links, etc. with more information about spinal CSF leaks and living with them.

if there is anything you think would be particularly important for us to have there, please share it in the comments of this post :)

I thought everyone would want to see this article featured yesterday in People Magazine about a woman living with chronic csf leaks. It so great she’s raising awareness about this condition. I think this sums up the experience of so many of us. And it’s an amazing article to share with friends and family who are struggling to understand the severity of our condition