r/CSFLeaks

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On April 10th i got an Lumbar puncture. Next day leak.

Couldnt get up, tinitus, nauseau and felt like i was pulled down when standing up, pressure in the neck and headache in the back of the head. Also the worst for me was when laying down i was on a boat. Non stop.

On April 14th i got my first blood patch. 19cc of blood.

No changes. Felt pressure in my ears when injected the blood but that was it. Admitted in Hospital because i was really sick.

April 16th second patch 20cc blood. Send home after 4 hours laying down after the patch i felt something in my head after, a changed pressure i think. The next days at home some headaches, and just sick.

But the pain in the back of my skull was gone

A couple of weeks later the boat feeling left.

But then started my main symptoms: de dropping sensations. I feel this in my head, but also in my back..

Its horrendous. Also i feel a G force sometimes laying down on my side or sitting on my knees when doing the laundry in the machine.

When i move my back when laying down i get a wave of dropping feelings. But it also happens sitting, or standing. It doenst matter if i sit or stand or laying down.

Also had a couple of weeks the feeling i was in an elavator.

The dropping sensations are ruing my life. Its constant also when laying in bed i feel like i sink in the matress.

They did an mri spine and mri brain, they where clear.

I asked for an second opinion, send to an leak center in Amsterdam. (Im from the netherlands) and they suggested to do another bloodpatch.

They said the expected still a micro leak.

But they where also in doubt.

They did an multi level patch of 22cc

And yet no difference.

I dont find any stories exactly like mine i dont have any headaches. Just non stop dropping sensations

Also tried diamox. No differance.

Is this fitting a micro leak? An nerve inflammtion??

All my hope is gone and its not mangable

sorry for the long response, i’m desperate. I feel like my life is over. any advice is greatly appreciated as i’m extremely lost.

I’m a 19-year-old female, and I had a lumbar puncture on January 8th of this year. It was guided with an x-ray, felt nothing but a bit of pressure with needle going in, but I did feel a weird sensation in my head as they took the fluid. immediately after the procedure the headache started.

For about eight days afterward, I had an excruciating positional headache. Sitting or standing caused unbearable pressure and pain, and I could barely lift my head without immediately needing to lie completely flat again. Even turning onto my side made the headache worse, but lying flat caused intense pain between my shoulder blades, so I was constantly trying to find a position I could tolerate.

The severe headache eventually went away on its own, but almost immediately afterward I developed a completely different set of symptoms. Being upright started causing severe air hunger, an increased heart rate, pressure in the back of my head, and a strange weak or heavy feeling in my neck. Wearing a neck pillow helped slightly because it felt difficult to support my own head. The air hunger and pressure in the back of my head improve when I lie down.

I also started experiencing obvious blood pooling as soon as I stood up. My lower legs, feet, arms, and hands change color very quickly. My hands can become bright red with white patches, and my feet also become very red. My hands and feet are frequently freezing cold, but at other times they become extremely sweaty. My veins also become much more visible when I am upright.

At the beginning, I constantly felt like I needed to drink water or eat something, almost like my body was desperate for fluids or energy. More recently, I have developed very little appetite, which makes it difficult to eat consistently even though not eating can make the symptoms worse.

I had already spoken to my neurologist, but he would not perform or refer me for a blood patch. A few weeks later, he referred me to a cardiologist, who diagnosed me with orthostatic hypotension and sent me to physical therapy. At that point, my symptoms were still better in the morning and became worse later in the day. I did not feel well while upright, but I could still attend physical therapy in the mornings and tolerate some activity.

Physical therapy eventually ended without improving my symptoms. After that, we mostly waited to see whether my body would recover naturally. Several more months passed, and instead of recovering, I gradually became much more limited.

I was also evaluated for thoracic outlet syndrome because testing showed compression around my neck and upper chest. I did have neck problems and episodes of head pressure before the lumbar puncture, which was originally why I had the procedure. I wanted to rule out idiopathic intracranial hypertension, but the lumbar puncture did not show IIH. My doctors now think some of my original symptoms may have been related to my neck. I have a very straight cervical curve and extremely tight neck muscles, but the muscle guarding and neck weakness became significantly worse after the lumbar puncture and have stayed that way.

The pressure symptoms I had before the procedure have also changed. I no longer experience the same type of head-pressure episodes I had before. Now I sometimes feel pressure in the back of my head while standing, along with neck weakness. When I lie down, I can develop pressure in the front of my face, especially inside my nose and between my eyebrows. That facial pressure can disappear almost immediately when I stand back up. My ears also pop frequently. I still have some pain between my shoulder blades and occasional lower-back pain around the area where the lumbar puncture was performed.

My vision has also changed. There is a constant grainy or static-like layer over everything I see, and my pupils do not seem to dilate properly in darkness, so I have difficulty seeing at night. Bright lights and stores are extremely difficult for me to tolerate. Going into a store can trigger visual overload, dizziness, a near-fainting response, and a severe full-body crash.

I now experience dizziness that feels like I am standing or walking on a boat. My balance feels uncoordinated, and I sometimes feel as though my body does not know where it is in space. My blood pressure can appear normal while standing, but my heart rate increases and my entire body feels extremely unwell.

At this point, almost any upright activity can trigger a crash. Even sitting at my computer or being out of bed for a short period can cause severe fatigue, heaviness, weakness, and an unbearable restless or anxious feeling throughout my muscles, almost like I constantly need to stretch. During these crashes, it genuinely feels like my body is shutting down. I am mostly bedbound now, even though earlier in this illness I could still sit at my computer, attend appointments, and tolerate more activity.
I usually feel slightly better in the morning, although I am still symptomatic. Everything becomes worse later in the day, and my symptoms flare severely around my period. The fact that this has become progressively more disabling over the past seven months is what scares me the most.

I feel like I developed severe autonomic dysfunction after the lumbar puncture, but I do not know whether I still have a CSF leak, whether the original leak triggered POTS or another form of dysautonomia, an autoimmune response, damage to autonomic nerves, small fiber neuropathy, or whether months of being mostly inactive have made the original problem much worse. I also do not know whether the unusual positional pressure, ear popping, vision changes, pupil symptoms, and continued back pain could still be related to abnormal CSF pressure.

Has anyone experienced severe or progressively worsening autonomic symptoms after a lumbar puncture or post-dural-puncture headache? Did you still have a leak after the original severe positional headache improved or changed? Did anyone experience blood pooling, visual snow, abnormal pupil dilation, air hunger, balance problems, or severe activity crashes? What specialist, imaging, autonomic testing, or treatment finally helped you get answers?

Seven years ago I was rear ended (minor collision). Maybe two days later from that I had an onset of a CSF leak. For seven years I have struggled with this.

I’ll spare the history with the countless doctors and ineffective specialists and inconclusive images, and failed patches and myelograms.

But yesterday I was rear ended AGAIN. Do I go to the hospital? I’m so anxious because this is what started at all. She was not going fast at all maybe 10 mph.
After a crazy year last year after childbirth, the symptoms have decreased.
I have been able to manage by drinking water and laying flat after two hours every day. I lay on the floor at work and they usually don’t take trips or anything longer than two hours where I won’t be able to lay. This has become my life.

Today I feel a little wonky, not my full regular symptoms of when I need to lay flat but the room kind of feels like spinning or just like an imbalance … should I go to the hospital? They’ve never been able to help me before , my Neurologist is not that great and I have not received top care from Johns Hopkins CSF clinic. I don’t know what to do. I don’t know where to go because no one understands. Do I just lay down. I hope this passes. I’m so mad at the person who rear ended me.

Lumbar puncture 3 months ago at this point
Symptoms started as feeling of pressure dropping from my head with a high pitch sound
Now my symptoms are: severe arm and leg heaviness and loss of sensation, I find opening my palms very challenging like they’re made of rubber
I used to take 1500 mg to 2000mg of acetazolamide, now 250 mg causes extreme brain burning that I can’t tolerate specifically at the base of my brain
Severe squeezing tight sensation in my spine from neck to sacrum that doesn’t stop and it’s very painful to sit because I’m aware of how full heavy and tight my spine is
Really hard to think and talk I feel like I have Parkinson’s, can’t even change trash bags without deep thinking
Extreme fatigue
Upper arms that crack I feel my humerus cracking and crunching when I turn my arms
Feel like gravity is pulling me to the ground
Pulsing sensation from head to left arm
Yes I had a blood patch 20 days ago which was 2 months post lp but I don’t think that did anything
Does anyone have these symptoms??

I had a baclofen pump for a few years that had a catheter going into my spinal canal at L4 and I had it removed due to it causing a csf leak. I removed the pump, hoping the leak would resolve but it didn’t. I’ve had two fibrin glue patches done by Dr. Maya at Cedars Sinai at the direction of Dr. Schievink. My last one was in January and now it’s leaking again. Dr. Schievink suggesting doing surgery now but I really don’t want to so I’m electing to do a third glue patch. It’s basically been every six months that I’m having to get another one. I can’t keep doing this forever. Those of you that have had surgery, how many patches did you go through before giving into surgery? And how was your recovery?

I had an epidural 19 months ago. Leak confirmed on mri 3 months later after a lot of gaslighting. Since my patch I developed floaters and visual snow. Got a second patch no change. I have head pressure in temples and back of head intermittently. All MRIs show resolution. Spine and brain. But my symptoms are head/ face pressure. Intermittent occipital pressure. Tinnitus visual snow and afterimage. I’m begging for a third patch but neuro radiology is declining bc they want a ct myelogram first but I know iatrogenic leaks don’t show on ct myelogram and I’ve been fighting my neurosurgeon on that and me not wanting to create another leak from it

I spent so much time here I felt I should come back and tell my story because this is what I spent so much time looking for. In January 2025 I had a csf leak after spinal anesthesia from my c-section. 7 days later I got my first blood patch, 6 weeks later I had my second. About 3.5 months later I had a ct guided blood and fibrin patch. I was convinced it did not work and was miserable. But then I started to get better. I made extremely slow improvements. In August I was able to move home after staying with family for months to help care for our baby and toddler. I went back to work part time in October and have been full time since January. I take care of my kids, travel, live a full day every day, and don’t worry about whether I’m going to be able to do things. I have started running again (a huge passion of mine) and ran 6 miles last week.

Things are not perfect emotionally or physically. But I know I’ll get there. Something I did not know for a while. I was devastated for a very long time and was convinced I wouldn’t get better. But I did.

I have confirmed csf leak from venous fistula with major brain sag. I've had the orthostatic head pain for two years but recently I started getting numbness.....right side numbness in leg, shoulder, and head. I was wondering if anyone has dealt with similar. I also get blurry vision and "weird feelings" in lower right leg and right forearm. My hands and feet also get really cold and my whole body shakes but maybe that's from my Hashimoto's.

Hi everyone,

I have a CSF leak from an epidural I received when my son was born 18 months ago. It took 17 months to get a proper diagnosis after being dismissed over and over. I told the midwives where I delivered that I was having severe positional headaches shortly after birth. They checked my blood pressure, said I was fine, and sent me on my way. My husband figured out I had a leak using AI, which picked up signs of SIH before my neurologist did.

I had my first blood patch a few weeks ago, and it worked for 10 days. Then it failed, and all of my symptoms came back. I have my second patch scheduled soon, and if that doesn’t work, my doctors think I may need surgery.

I’m really needing some encouragement right now. I have a toddler to parent, a life I want to get back to, and I’m struggling. If you’ve been through this and come out the other side, I would love to hear your story. Success stories or words of hope would mean so much to me. Maybe this thread can also help someone else who needs a little encouragement too.
Thank you!

How long can a csf leak from an epidural last for?

I’ve been leaking for about 3 months now and have been very lucky to have found great doctors who have listened and have expedited consults and procedures for me. I’m going in for my first blind blood patch tomorrow and was just curious about a realistic timeline for returning to work? I work as an RN in the CVICU so have a very physically demanding job. We’ve arranged for me to be put on modified duties (paperwork/desk job, then eventually working on the unit but no patient assignment). I was just curious if it would be reasonable to be back working a desk job 4 days after the procedure? I’ve read that recommendations and people’s experiences vary so much so it’s hard to judge what my recovery will look like. I’m an active runner, biker, and gym-goer at baseline so would love to get back to that eventually. Any insight would be really appreciated!

I suffered from headaches almost my entire life(43). When I was younger, there was really no discernible pattern. They just happened. As I got older, maybe early 20s, I noticed they would be after straining myself or physical exertion, but it would be hours later. As time went on, the headaches would happen soon after exertion or instantly. Then it got to the point I could only be upright a few hours before my head started to hurt. This is when I noticed if I would lie flat, the pounding at the base of my skull would stop instantly. It should be noted over these years I had about 5 MRIs of the brain that showed no issues.

Over the last year I really focused of trying to figure out what was going on. At first, one neurologist tried to tell me it was exertional migraines. I really didn’t believe that because, why would my headache stop instantly when I laid flat if it was a migraine? So I found a new neurologist and he decided to get some new brain images. That’s when it showed my brain sagging. It’s interesting that even after almost 2 decades of progressing symptoms, nothing showed up on the previous MRIs(they checked).
So after researching, I asked for a referral to Duke and went in Nov of last year. They found a venous fistula at T5. I scheduled my embolization in January.

After the procedure, it was a little rough. Not from the procedure itself but the rebound pressure and recalibration. I had constant ear popping, autophony, and intense rebound pressure. At first I wasn’t sure it worked only because I felt so miserable. Slowly but surely everything is starting to even out. I don’t have any of those symptoms anymore. It’s been 6 months and I feel great. I can run, lift weights, play golf with no issues. I haven’t had a headache of any kind in 4 months.
I write this to those who feel like there is no hope. I was like you for about 20 years. Thinking there were no answers. That I was destined to suffer constantly. That is not the case. In my case, for almost 20 years, nobody could give me an answer. Then one day, the imaging showed otherwise. I’m not saying everyone on here who thinks they have a leak does, but I encourage you to advocate for yourself.

Hello there!

My doctor suspects a CSF leak for sudden onset headaches that I've had since April following a suspected stroke incident. While no blood clots or stroke were found, we haven't been able to find any CSF leaks so far either. My symptoms greatly improve when laying down, so it's his top culprit at the moment. I am waiting on a blood patch currently and in the mean time, he has asked me to try caffeine pills to see if they give me any relief.

From my testing, they do, but it's not what I expected. When I have visual symptoms/disorientation/headaches coming on, I'll take 200mg. For the next 2 hours, maybe a little more, I actually feel like crap with headache and then feel amazing for the couple hours following. Well, amazing will be strong, but I can tell a difference. It then tapers off and fades if I don't take any more.

Has anyone else had a reaction to the caffeine like that? I don't feel hyper or energized, just very normal - more normal than before the pill. How do the pills positively help you? I've just never had a reaction like this to coffee or anything else, so curious!

This is my 7th day after doing lumbar puncture. First two days were awful, with a very severe headache that kept me lying horizontally. 3rd things improved and I could sit down and walk, with headaches taking longer to appear and less in intensity. Now on the 7th day I can sit for hours, but I still get that pressure feeling in my head. Like someone pressing hard on my head, or a 3/10 headache.

It seems it's improving slowly. But I was wondering if anyone had a slow recovery like this? What was it like? And can it take that much time to improve? I've been anxious about this for some time, so any hope is appreciated. I'd ask you if you have had really bad experience to please not post them here, I've read enough of these. Thanks!

Hi everyone. My neurologist recently brought up the possibility of a spontaneous CSF leak, and I’m feeling overwhelmed. I’m not looking for a diagnosis, just wondering if anyone with a confirmed leak had a similar experience.

For about a year now, I’ve had what I describe as a daily tension-type headache. I usually wake up without a headache, and then it gradually builds throughout the day, becoming its worst around 5 PM. The pain is mainly in my temples, the base of my skull/occipital area, and my neck (traps and levator scapula area).

When this first started in Aug 2026, I also experienced fatigue, dizziness, lightheadedness, and ears ringing frequently. Since I started taking an SSRI, these symptoms have mostly subsided (I’m still fatigued). Occasionally I also have migraine attacks with visual aura and light/sound sensitivity, so I’ve been diagnosed with chronic migraine as well.

One thing that confuses me is that certain positions seem to trigger or worsen my headache. Looking down at my phone for too long, watching TV with my chin tucked, or bending over (like organizing things on the floor for a few minutes) can bring one on or make it much worse.

So far I’ve tried:

Managing stress (SSRI, and talk therapy)
Brain MRI with and without contrast (normal)
Cervical MRI (only minor disc bulges)
2 rounds of migraine botox
Occipital nerve block
Trigger point injections
Migraine medications (amitriptyline, topamax, propranolol, sumatriptan, rizatriptan, ubrelvy, Emgality)
Physical therapy
Dry needling
Massage therapy
Chiropractic care

The Botox and occipital nerve block helped somewhat, but nothing has stopped the daily headache.

I also have some signs of generalized joint hypermobility (thumbs to forearms, pinkies bend past 90°, knees lock back, history of multiple ankle sprains/fractures).

After hearing my history, my neurologist recommended a repeat brain MRI, a myelogram, and possibly an epidural blood patch because she suspects spontaneous intracranial hypotension.

For those of you with a confirmed CSF leak:

Does this sound similar to how your symptoms started?

Were your headaches worsened by bending over or neck position?

Would you get a second opinion before a myelogram/blood patch? If so, what type of specialist would you recommend?

Thanks so much. I’m feeling pretty anxious about moving forward with invasive testing and would really appreciate hearing your experiences.

I presented myself to the hospital ER with a splitting headache, sore neck, nausea and vomiting when upright. The doctors did a series of test including CT scan, MRI and ct mylogram and they detected a CFS leak on my T1-T2 due to a bone spur (worried there might another tear due to ct mylogram). I’ve been in out of hospital since then and have been treated as an outpatient but I feel like the neurosurgeon at Royal Melbourne Hospital aren’t taking my symptoms seriously as they said they they wanted to do a blood patch but it has been 2 weeks since said that and I have heard nothing, it’s been so tedious calling the hospital trying to find out when my next appointments is or what to do next but they keep transferring me to another department because they don’t know, I’ve also talked to my GP and he said this beyond pay grade. I’ve been feeling overwhelmed and anxious and I to know if anyone know a neurosurgeon in Melbourne, Australia who specialise in CFS leaks.

I am interested to know the timeline of events after being referred to a specialty hospital like Mayo for a CSF Leak. How long did most people wait to get into these clinics after being referred by a physician? How long was your stay there for diagnosis? Did you have to book a second stay for the surgery and how long was that and the recovery?

Looking at some future planning. Thanks in advance.

Hey y’all. I’ve been dealing with some symptoms that suggest I may have a spinal csf leak, and I have a neurology appointment tomorrow. I’m at a place where I can’t be upright for more than 5 minutes without feeling truly awful, and if it takes weeks before I can get an MRI… how will I live like this? I doubt they’d be able to send me for one same day. Right? This feels so scary. I’m nauseous. There’s so much pressure in my head when I stand up. My ears are ringing. My walk is weird. The lights are too bright. I’m freaked out. I’m a 35 year old mother to 3. They need me. Can someone offer some reassurance, please? I know no one can give me medical advice etc but I’m alone and could use some supportive words from people who might understand.

I know it's still early but I'm on day 5 post blood patch and feel zero difference in symptoms just like with my first patch.

Timeline:

Epidural steroid injection L5/S1 July 9, 2025

Developed leak symptoms with 1 week of injection.

Pulsatile tinnitus, severe ear pressure, ear popping, ear drum spasms, head vibrations when upright.

Gaslit for 5 months then had a targeted l5 transforaminal blood patch 10 mls. No change in symptoms.

Now 1 year after symptoms started I had my 2nd patch same as before, 10 mls transforaminal approach and nothing, no type of change at all.

I'm feeling defeated, depressed and scared. I'm thinking I may have a bleb and that is why I have no improvement with patches?!

Hi have hEDS and I was in the shower today, blew my nose and bright yellow fluid came out of my nose (a little bit thick in some parts) but in general it was runny. Transparent too, like transparent highlighter yellow. Anyways, it only happened when I blew my nose, and when I blew everything out it eventually stopped. When I tilt my head nothing happens, there’s no odd taste or smell, nothing. I have had no injury or traumatic event happen, no headache, no anything. All I have is chronic sinus inflammation bcz of my allergies. Anyways, called an advice nurse line and they told me I was fine, but given the fact I have EDS, I’m just worried. Are csf leaks always clear? When are they yellow? I’m afraid of it being a leak and developing meningitis or something. Anyone been thru this?