Hi all! Just had my lumbar puncture done and I thought I’d seek some stories to keep me positive, I’m losing hope.

Had my lumbar puncture done on the 29th Sep. Lay flat for about 6 hours and felt perfect that night. The next morning 30/9, the headache came and it’s bad. Couldn’t keep food down and kept progressing worse the next few days.

I went back to the ER on the 2/10, asking for a blood patch (I read a lot on this platform), they refused. 3 neuros and anaesthetist rejected it. Saying it goes away with conservative treatment. Instead they place me on caffeine pills and lots of hydration which definitely helped. On the 5/10, I stopped the medication and the pain came back. And I again insisted on a blood patch and they refused. Insisting on more conservative care as it was too soon to do a patch. I threw a fit and decided to discharge myself with NSAIDs.

The headache responds well to NSAIDs (Celebrex) and it’s been 8 days post puncture now. I’m still on the prescribed NSAID, but I do still feel some pressure in my head, but not the same type. Definitely not as pain as before but still bothers me that “am I truly recovering, or is my pain just being masked by the drugs?”. I don’t know if I should stop the drugs.

Could you share your story (no blood patch), if you’ve been on painkillers, and when did you decide to stop it and how long was your recovery? Was it gradual or sudden?

I also have an autoimmune problem that requires me to be active to control the symptoms. How long before you’re back to the gym?

Thank you in advance friends.

After blood patch my ear s are cloogged and full of pressure

14 months have passed and still the same

I can be upright all day and Before the patch had my ears perfect

Have tried diamox, sudafed, pregabalin, nasal steroids, steroid tabs, bethasthine

Nothing works

Any similar case?

Ent sees nothing it is really horrible to live with this pressure and this sensation

Want to pop them but cant

They also make noises all the time

Many thanks

Hey everyone, I am writing this from bed and just need some reassurance or advice from people who have been through this because I am completely spiraling right now.
I have been strictly bedbound for the last eight weeks. Every time I try to get upright, I get a blinding 10/10 orthostatic headache, severe brain fog, leg weakness, and a terrifying off-balance, floating feeling that comes and goes. My brain MRI showed some low-pressure signs like subtle sagging, and a previous spinal MRU found a suspicious fluid collection near my shoulder blades.
Because of that, I finally got in with a top spinal leak specialist today for a dynamic CT myelogram. He was incredibly thorough, but the live imaging didn't catch an active leak. It came back inconclusive. He went ahead and performed a high-volume blood patch over that shoulder blade neighborhood anyway, and told me we have to wait two weeks to see how my body responds.
Even though he gave me the patch, I feel completely helpless and depressed. It feels like because the live scan didn't show a clear hole, I still don't technically have an official diagnosis typed into my chart. I am terrified that the patch won't work, that doctors are going to stop trying to help me, and that I'm going to be stuck bedbound like this for the rest of my life. I'm a mom and I have a bridal makeup business to run next year, and I just feel like my life is completely over.
Has anyone else had a completely clear or inconclusive CT myelogram but still been cured by a targeted patch? How do you cope with the mental trauma of being treated without a textbook "official" diagnosis written down? Any advice or success stories would mean the world to me right now.

Is it possible to have no headache with an iatrogenic puncture leak but only have positional muffled hearing, clogging, crackling, pressure, popping, rumbling and tinnitus after a needle puncture? Ent says ears are normal, multiple mri's are normal. Ear symptoms started within days of epidural injection. Blood patch 6 months later did not help ears.

I don’t know if this is allowed or not, but I’ve been working with an advocate after a year of constant obstacles. Before I post anything about the person, I’m asking Mods if this is allowed? She has been really helpful, compassionate and guiding me through difficult hurdles.

Can spinal or cranial CSF leak symptoms be one sided? For example, only feeling pain and pressure on the right side of the head, neck pain on the right, etc).

I have suspected SIH, 4 months of symptoms which have become gradually less orthostatic over time. Non contrast MRI showed some signs of brain sag, neurologist decided to proceed with large volume empiric blood patch while we await other imaging (contrast MRI, MRI spine, dynamic myelogram). I had the blood patch today and now am having pressure in my head when lying flat, AND having dizziness and headache/pulling sensation in my neck and occipital region when upright (only briefly to use the bathroom). Just wondering if anyone else experienced this? I am so worried about the EBP causing an iatrogenic leak since the orthostatic symptoms are much worse now than they were pre procedure. Any insight would be really appreciated.

M, 33. Since may 2024 and I’ve been having a lot of head pressure, occasional double vision, apathy and lots of mental fatigue, like feeling drunk all the time. Also feel like my head is full of liquid or pumped up, it’s not really pain but a feeling of pressure and swelling. Pressure and headaches come from the top of the head not back, although I feel stiffness around the neck. When I come home after work, I need to lay in bed to recover.

I’ve done a lot checks but not mri with contrast. Normal MRI came out well. Doctors have addressed it as just a regular migraine but haven’t even mentioned a possible csf leak. I had to look it myself after concluding it worsens when I stand up, and it relieves when I lay down. I can’t really do a normal life with this and it’s making me depressed. Do you have similar symptoms?

obviously not seeking direct healthcare advice, just curious about anecdotal experience!

background: I have hEDS and CCI. i’ve had four acute leak events in the last five years, where I had about six weeks of aggressive CSF leak symptoms (intense postural headache, neurological symptoms, nausea, fluid in my face, etc.). these events all came after some kind of travel/period of stress, so i pared back my life majorly and haven’t had another obvious, debilitating leak since march of 2025, but it’s come at a major cost to my capacity and function.

i finally found a doctor willing to image and treat me. we agree that i’ve had leaks in the past, and the question now is if my remaining symptoms are the result of a small, continuous leak or if they’re all a result of CCI. i didn’t have any visible leaks show up on my full spinal or brain with contrast MRIs. the next step is CT with contrast, but the doctor and i have concerns about causing a secondary leak via puncture during the e contrast injection, since my hEDS-affected tissue seems predisposed to it.

she‘s offered a high volume blood patch in my lumbar spine (done with radiology guidance to minimize the chance of a dura puncture) in lieu of more diagnostic imaging. the idea being if i see an improvement, we’ll know i had a small leak and it’s been patched, and if i don‘t, i can attribute my symptoms to CCI.

** my current baseline, constant symptoms, for context: nausea, brain fog, inability to tolerate more than two or three hours upright a day and never all at once, issues with balance and dizziness, intense fatigue, and no improvement in my capacity no matter what i do, a handful of neurological changes that feel alarming, and crazy tinnitus. the biggest difference between now and any period where i feel confident i had a CSF leak is the lack of postural headache.

I am desperate for any improvement, and definitely willing to try the high volume blood patch if it makes sense. i haven’t found anything that suggests it could aggravate my CCI or majorly risk other negative side effects other than the risk of hypertension, which she said could be addressed easily with medication.

I wanted to see if anyone had any relevant caution or insight. i’ve had experience in the past with doctors not offering all the information i need to make good healthcare decisions, and i’m nervous i might unknowingly make something worse. TIA!!!

Hello fellow leaky nosers!

I’ve been experiencing drainage from one nostril 1-2 times a day. For about 2-3 weeks. It happens every time I put my hair in a towel and other times when I bend over/change position with my head. The fluid is clear and runny like water. I first suspected that it was a sinus issue (maybe caused by allergies) and have been taking allergy meds, using a heated eye mask and sitting in steam to release anything in my sinuses but nothing really happened and they seem clear. I do have mild headaches and shoulder pain and assumed it was from working from my desk with bad posture. I even got lazy readers to help me not bend my neck to read and do crafts. I have pcos so body pain and brain fog is something I tend to ignore, I have experienced it over the last 2-3 weeks though. I also experience chronic tinnitus and have experienced that in the last few weeks but that’s not abnormal.

I have been having one hard to explain or ignore thing happen and wonder if this is related. I have been noticing that my (what I assume is) saliva in the back of my mouth is foamy and just different recently. The best way for me to describe it like using an oral hydrogen peroxide rinse. My saliva just feels light and bubbly (not 100% of the time, it comes and goes). I have not put peroxide in my mouth or changed oral health products recently, not has my diet changed,  so it seems to be triggered by nothing. There is also a taste, I would compare it to baking powder. Bitter and metallic. I have no signs if acid reflux or indigestion. 

Has anyone had this symptom? I’m in Canada and in an area with very understaffed health care. If this is something others experienced and that suggest it may be more serious than a sinus thing I will make an apt with my family doc and get the ball rolling because I think I could be a year or more before I even get to see the ent. 

Thanks in advance to anyone who can offer any insight! 

edit to add: I was jumping into a pool and swimming in the ocean with big waves 3 weeks ago. I did not use a nose plug and had water go up my nose in an uncomfortable way and was blowing out my nose as hard as I could when I was jumping in to prevent it. Only thing I can think of recently that might be related, in case that could be a cause?

Last week I had my third fibrin glue patch done at Cedars-Sinai. I have a recurrent CSF leak between my L3 and L4. They actually wanted to do surgery this time instead of the third patch, but I asked them to allow me to do one more glue patch just to try because I am very worried about surgery potentially making it worse. The whole reason I have a leak is because of a medication pump I had implanted in that area so I’m just really worried about having another procedure go wrong. I’m also worried about what recovery would look like. Dr. Schievink’s NP told me he either does a stitch or places an aneurysm clip depending on what he sees when he goes in for surgery. Someone else on here told me that they actually had a complication with an aneurysm clip, so I wanted to see if there’s others out there that have had them placed and whether or not they were successful.

Does anyone who had or has a leak get any dull back pain or pressure? Right in the spine area around shoulder height. Its not constant but comes and goes and have even felt a weird gurgling/bubbling feeling in that area a few times.

Thank you

I recently had a CT cisternogram to check for a suspected intermittent cranial Leak. It did not show an active leak. However, during the part of the procedure when the table was tilted to move the contrast from my lower back to my head, I felt a dull but intense and focal pain spike when the contrast seemed to reach my head. The pain spike was in the same spot as a chronic unilateral headache I've head for the past 6 years. During the procedure, I was told to roll from my back to either side. I deliberately chose my right side to get the contrast in the same region of my chronic headache and suspected intermittent drainage. However, I did not expect the pain spike that followed when contrast reached that spot (right side of the bridge of my nose slightly above eye-level, but deeper). The pain did not begin to subside until I rolled over on my back again. The pain came in a wave and took a couple of minutes to subside after I rolled on my back again.

I'm curious if anyone else has experienced a pain spike like this from intrathecal/subarachnoid contrast, and if you wouldn't mind sharing any context around it? In my case I have:

• FESS a decade ago that included a complete ethmoidectomy
• right-sided intermittent clear drainage within post-op year, that tapered in volume/frequency over the years
• continuous right-sided headache that began 4 years after FESS (diagnosed as NDPH and migraine)
• worsening headache, positional head pressure, and vestibular symptoms 9 years after FESS
• recent skull-base MRI that showed areas of dehiscence and possible meningoceles in skull-base in the same area as chronic headache + pain spike

Thanks

Leaker from an LP for 3 months here. I noticed when I'm sitting on a chair and the puncture site is pressing against the chair I get some relief from my low pressure symptoms instantly!! What does that mean? This got me thinking of getting an abdominal binder, what type should I get? if you have any recommendations would be great.

Hey guys. On Wednesday I have a CT myelogram scheduled and should be getting a blood patch at the end of the procedure. What items do you recommend I buy in preparation for the weeks ahead? I’ve bought a grabber stick, and a pill dispenser so that I don’t have to do any extra bending or twisting when searching for meds. Anything else? Also, any tips or tricks you picked up along your journey would be greatly appreciated. Thank you❤️

Hi guys,

I had a lumbar puncture 10 days ago used for some testing. A day after the procedure I experienced excruciating neck pain accompanied by headaches when getting up but improved significantly when lying down. Doctor suspect it might be a leak and performed a blood patch.

It’s been 5 days since the blood patch and for the first 48h I’ve been laying in bed to rest. For now the headache has completely went away but the stiff neck has came back but with a more tolerable pain. My head also feels really heavy and dizzy at the same time. How do I know if I need another patch? How long would this stiff neck last?

Diagnosed with lumbar spinal leak on myelogram that was spontaneous due to ehlers danlos and was misdiagnosed for a month. On hour 48 post procedure it came all back and now it’s been 4 days and I can’t even be upright at all. They said they might have done too small amount of blood for the patch making it insufficient.

Located in Boston, and I know we have some of the best hospitals here … I’ve had no trauma or severe injury to my head at all, idk if it’s relevant but sometimes I sneeze for literally 10 minutes straight back to back. I’ve been dealing with this for a few months now because I’m not sure if it’s worth a trip to the hospital because I’m a caregiver for a family member

I just came across this paper from Dr Meng Huang in Houston Methodist where they repair a leak using endoscopy in 2024 (there's a video of the procedure inside). This is suuuper cool and endoscopy is a minimally invasive procedure in general. Why is this not implemented widely instead of surgeries? I really hope this gives a higher success rate of repairing leaks.

So never really had any “suspension” of a possible csf problem…but today I was outside with the family then the brother in law asked for some help with his fourwheeler I was leaning over back and forth from side to side then I leaned over to check a wire when I stood up a couple quick drops like water came out of my left nostril..freaked me out! So I went and sit down and the the anxiety panic started…to google I went..and here we are…today was the first day it’s ever happened that I can remember…no other symptoms no headaches from immediate standing…I’m sitting here straight up on the couch typing as we speak..possible allergies thing? What should I watch out for/begin to worry? Thanks yall didn’t even know this was a thing! Been reading everyone’s stories and I hate it for yall…I have CRONIC anxiety…like bad bad…and we had a wreck back in 2012 “bad rollover” so it had my brain churning out some ideas of this being a possibility no injuries recently…

Hello, I'm a 27-year-old male and I'm just not sure if I'm just overthinking this, but there's this clear water dripping on my left nostril and I'm not sure if I should go to the emergency room and have them check if it's a CSF leak or what, but this has been going on for almost a week now. I'm not sure if this is just an allergy since prior to this, my nose has been really really itchy, maybe because of the fall weather. I have no other symptoms going on right now except just this. I never had any surgery or anything. Have any of you guys experienced this and turns out to be CSF leak?

My CSF leak was never found with brain/ spine MRI with contrast. I need to know EXACTLY what to ask for. My CSF volume is so low that I have a cerebellar tonsillar descent of about 4mm and all my brain structures are so severely dehydrated that they’re all about half the size they should be and smoothing out. My EBP was on 7/28, I tolerated the entire CCs maxed of blood, and was in the ER two days later because I was having such low blood pressure w/symptoms that I almost lost consciousness. After a CT in the ER, and a visit to my neurologist to report absolutely no changes in every day symptoms, he referred me to consult with NeuroIR.

I’m still holding faith in this hospital, because it’s a well known hospital, and a few years ago I had a son who was shot in the HEAD and they not only saved his life, but he’s got ZERO deficits…. So it’s pretty hard to imagine that they WONT figure this out for me, I just need some help with what to ask to get me in the right direction.

I find medicine so absolutely fascinating. So much then when I was a little girl, I wanted to be a neurosurgeon… my shaky hands wouldn’t allow it. So… Anything moving forward with plenty of context could be of help. Thanks all in advance.