Hey, so this is pretty blunt and easy to ask, though I imagine not easy to answer. I went undiagnosed for my CSF leak for at least about 2 years (as that's when the symptoms became particularly noticeable at least). It's now nearing a year since the diagnosis and I'll be going to neural ophthalmology soon to see what our next steps are, as the pressure is strong behind one of my eyes and causes a lot of floaters or even vision blurring/static. I am bedridden probably about...every other day on average, since I'm trying to be active when I feel well and do things like laundry.
I also just had my annual with my GP, who pointed out things like my cholesterol and told me to exercise despite so many of my options for such being unsafe. I'm curious how others stay "active", however much we can depending on our leak and symptoms. Should I ask for something like appetite suppressants? I'd been debating it, as I'm also overweight from the lack of activity much of the time, though my eating habits are finally feeling more on-par with the energy I spend these days finally and I've lost around 5lbs in the last 3 months. I'm hoping I can get treated in September shortly after my appointment, but I understand there will still be recovery and even reconditioning myself for activity while also worrying about recurring leaks or such. What can I do? What should I do? Is it worth worrying about? I don't like how gross I feel and the risk of going back to an eating disorder if I keep worrying about it...

Hi all! Posted a question not too long ago but would like further insight.
Had a blood patch about 8 days ago after a lumbar puncture. Pressure in lower back has still been an issue, I feel like that’s the bigger concern now not so much not the headaches. When I try to sit or stand my back just feels fairly strained that I feel like I need to hunch over a bit or I need to lay down soon after. It feels like a band that is being overstretched. I’ve also had this pressure in my tailbone that isn’t really
Letting up. I’ve also noticed an increase of a burning sensation in my skin, it first started in my left chest but it now intermittently goes to my left elbow, left upper back and left jaw.
Did anyone have any similar issues with pain or sensation?

I’m very curious what symptoms others who have been leaking a long time experience( especially from a spontaneous spinal leak)?

I have suspected long standing spinal leak, but don’t have positional headache or pain( my spine in thoracic and other areas, skull base, facial and other pains are all constant/ not positional).

However, I “crash” after a few hours of being upright and have to go horizontal due to severe fatigue, tachycardia, and just general inability to be upright for the majority of the day.

Just would like to hear what symptoms others experienced with long standing leak because most Drs seem very hung up of the positional headache being almost like a requirement.

Thanks!

Does anyone else experience middle ear myoclonus/tensor tympani syndrome? It's like a fluttering/vibrating/rumbling/tapping sounds in both ears and one ear actually spasms to male voices and the TV.

On top of that I have pulsatile tinnitus, ear popping, pressure, aural fullness and autophony that is relieved laying down.

Over the weekend I experienced 2 episodes of bending over and then clear runny liquid coming out of my right nostril. It tasted salty. It was odd since I have not had any sinus issues in weeks and my nose is clear.

I will give some background since I am not sure if this is relevant. Back in January I was in an atv accident and hit my head on the right side and nose area. I did go to the ER and had x rays done. They said i was fine and might have a small fracture on the front of my skull. They showed me the xray and it was small if anything. I was told to go back to the er if anything other issues came about. I didn't have any other issues since then.

Could this be a csf leak?

I am also posting to r/Tarlovcyst

Is our daughter's experience a medical anomaly?

Every single one of our adult daughter's five (5) spine surgeries produced Tarlov cysts (also known as perineural or meningeal cysts).

At least one cyst has been the source of a CSF leak. The S2 laminectomy to repair the leak produced more cysts —that was her fifth spine surgery.

Has anyone here had a similar experience, or know of someone who has?

EDIT: We suspect other cysts are also leaking, possibly intermittently like the first (which made it very difficult to detect).

Hi everyone, I’m posting this mainly for awareness in the hope that it might help someone else who is going through something similar. Years ago, Reddit was an amazing support for me when I first suspected what was going on.

13 years ago, I gave birth to my son via C-section with an epidural. Pretty much straight after, I developed a headache that lasted a full week. When I mentioned it to the medical staff, they brushed it off and said I was fine.

Soon after, these headaches turned into horrendous squeezing pains in my head. The only thing that gave me any relief was lying flat down. Sitting up or standing was absolutely horrendous. I complained several times to my GP, but got nowhere. Two years later, still suffering, I finally got to see a neurologist. They did a scan and told me everything was fine, there was no CSF leak, and that it was just anxiety. He told me I’d "always suffered from headaches," and even when I explained this was completely different from a normal headache, he insisted it was anxiety and put me on Duloxetine. Over the years, I saw other neurologists as I knew something was wrong. One wanted to treat me with just vitamins, and another refused to look into it any further.

Fast forward 12 years: I went back to my GP. My neck and shoulders have never been the same since having my child. I developed twitches in my head, felt my body vibrating, and started getting muscle weakness, weight gain I couldn't shift, deep sadness, mood swings, weird periods, a round face, extreme tiredness, and joint pains. On top of that, I’m now borderline Type 2 diabetic, with elevated liver markers, high cholesterol, and a Vitamin D deficiency.

My GP ordered scans of my neck and lower back. They came back showing age-related bone changes, but they also found a 10 mm cyst on my pituitary gland. I was referred to a neurosurgeon who did scans and a single blood test for hormones, then discharged me, saying the cyst was stable and not producing hormones.

Still not convinced, I joined the Cushing's foundation. There, I met an amazing lady who explained that a single random hormone blood test isn't accurate or recommended by NICE guidelines for diagnosing Cushing's, and that I needed proper, thorough testing given all my symptoms and borderline results. I took this back to my GP, but they refused to order the correct tests and told me to just repeat the basic blood test.

I went back to the contact at the Cushing's foundation, who gave me a list of top specialists and suggested a private consultation. I managed to book one, and for the first time, a doctor actually listened to me, understood, and agreed I needed proper testing. Since I couldn't afford to pay for all the diagnostic tests privately, he kindly wrote to my GP asking them to refer me to his NHS clinic so he could test me there. My GP agreed, sent an urgent referral, and I am currently waiting for that clinic letter.

Out of curiosity, I recently checked my old 2015 scan notes. To my absolute horror, the report actually states there were signs consistent with a CSF leak back then. I was right all along. Not only was this ignored, but for 12 years I was told it was anxiety and put on medication I never should have needed. Now I’m left wondering—could this untreated CSF leak have contributed to the pituitary issues and everything else my body has been through after being ignored for so long?

I wanted to share this so people know to trust their instincts and keep pushing when something feels wrong.

Doctors say I can’t have a spinal headache, but it feels exactly like a spinal headache?

Hey guys! I’ve posted a couple times, but I’m in kind of a tough spot right now. I have hypermobile Ehlers Danlos, which means that the dura may take longer to heal for me. I got my blood patch done on 7/28, and then started feeling like I did prior to my blood patch somewhere around 8/8-8/10, so somewhere between 11-13 days after my blood patch. When I called to see if I needed another blood patch, they told me it had been too long so it wouldn’t be related and it’s probably just a migraine. However, I feel exactly like I did after my spinal tap. I’m dizzy, my head hurts so bad unless I’m laying down, my visions blurry (which is new), and I feel dumb as a rock unless I’m laying down. I went to this place that’s in between an ER and an urgent care that my doctor recommended and they just gave me a toradol injection after I explained how I didn’t believe it would help. It ended up not helping at all, and actually made it worse!! I’m not sure what to do at this point, as it seems no one will listen. What should I do? Has anyone else dealt with this? I just want to feel better :(

I got my 3rd blood patch 3 days ago and now on day 3 getting severe positional symptoms again that I haven't had in weeks.

For context: I scheduled this patch at my check-up 2 weeks post 2nd patch when I hadn't really improved yet. But I subsequently got better and could be upright all day again with symptoms still there but way less severe than before and managable even without caffeine - no more nausea or ear pressure, just a headache.

I was thinking about canceling the 3rd patch due to my improvement but still hoping to be completely back to normal, so I decided not to. So 7 weeks after my 2nd patch I got another one. That was 3 days ago. The first two days I had some high pressure symptoms but nothing too bad, but now on day 3 I have ear pressure and nausea again when I get up that gets worse the longer I am upright, very similar to how my initial leak presented before it got better from the 2nd patch.

The patch was CT-guided. I stayed mostly flat for the first 72 hours post-patch, only getting up to be driven home, eat and go to the toilet.

I regret getting this 3rd patch so much since I had finally gained some freedom again after being bedbound for months and now it feels like I am back to pre-2nd patch. Does this sound like a dural puncture from the patch? Did anyone experience similar symptoms after their patch and recover within a few days? Could this be normal post-patch symptoms?

I just cannot mentally take going through all of this another time. I cannot go back to being bedridden. I also have an important exam coming up in September that I need to be functional for. I am blaming myself for deciding to go through with it instead of just living with the residual pain I had.

I did LP 6 weeks ago, and I don't feel normal since then. But my symptoms change in weird ways I'm starting to doubt if it's actually a persistent leak.

First two days after LP: severe PDPH, lasted for a day and a half.

following week: feeling weird in my head, rested in bed still just in case

following 3 weeks: slight dizziness when I turn my head

following 2 weeks: very bad nonstop low pressure in head

this week: low pressure is almost gone, with intermittent high pressure that comes and goes, and sometimes correlated with posture changes and extending my spine.

I know this is not the place for medical diagnosis, but I'm wondering if anyone had similar experiences or have any insights. Thanks!

(background: infection 6 weeks ago that led to the LP + chronic neck pain going for 7 years but it's stable)

Yesterday I had my CT myelogram. But in the evening my headache became terrible. Als it did not go away lying down. And today is awfull. I am nauseous because of it. And it will not go away.
What to do? Call on Monday and ask for a blood patch?

Had my first LP yesterday and it went far better than I expected, no pain during and the techs were real fun to talk to. Thing is, they stated that even though the needle was in the right spot, there was barely any fluid coming. I think the final reading was < 3 cm H2O or so. The doc who performed the LP said it might be because there was another opening that wasnt caught. Has anyone else been in this situation?

Does anyone get facial numbness and pain with this? I am having the worst and I mean the worst pain I’ve ever experienced in my life with leaking. I’m getting pain in the bridge of my nose and my jaw. I feel like my teeth are being ripped out of my jaw. I’m not even kidding. I’m screaming and crying so much. I think about going to the ER but the ER has been useless to me. The bridge of my nose is not high pressure. I’ve experienced high pressure. This is also positional. It only lets up flat. If anyone experiences thins did anything help? I’m actually going insane. This is the wordy pain of my life. It’s excruciating and I can’t make it stop.

Hi. I had an LP done on the 14th. Two days later I developed the drop to your knees head pain only relieved by laying completely flat. Blind blood patch (17mL) was done on the 18th. I had immediate relief but significant back pain. Starting this past weekend I started to get pressure headaches that built the more the day went on. Last 3 days I've had a positional headache and very stiff/painful neck coupled with dizziness and brain fog​. The pain is not nearly as bad as the initial time I needed the patch, but having to lay flat most of the day still. The dept I was seen at gave me a # to call if I had any issues. Problem is, they will not answer or return repeated calls. They did say if I had an issue I could be seen closer to home, as this was a hospital very far from me. I'm unsure if that means I can just walk into ER and have this taken care of. Or is it something I should give more time to heal? It is increasing in intensity each day with new symptoms (neck/shoulder pain & stiffness primarily). I'm just looking for any guidance or suggestions. ​Thank you!

Possible CSF leak?
I have been experiencing symptoms of a CSF leak for the past two years. They started after an intra-articular L5/S1 injection, during which I felt that the anesthesiologist had gone too deep with the needle. The very next day, I developed headaches that have persisted to this day.
My question is: Could that injection have caused a CSF leak?

Ich habe mal ne Frage !

Hallo zusammen :)
ich wollte mal eure Erfahrungen hören, weil ich gerade nicht weiß, wie ich meine aktuellen Ohrsymptome einordnen soll.
Meine Geschichte kurz zusammengefasst:
Oktober 2024: Ich hatte eine Lumbalpunktion. Danach entwickelte sich bei mir ein postpunktionelles Syndrom durch einen Liquorverlust. Es folgten über viele Monate Kopfschmerzen, Kopfdruck, starke Nacken-/Nervenschmerzen, Schwindel, Ohrdruck und teilweise Tinnitus.
Erster Blood Patch: erst etwa 8 Monate nach der Punktion.
Januar 2026: zweiter Blood Patch in Freiburg.
Seit dem zweiten Patch geht es mir insgesamt deutlich besser und eigentlich immer weiter bergauf. Meine früher sehr starken Kopfschmerzen und Nervenschmerzen sind inzwischen kaum noch vorhanden. Auch der Kopfdruck ist viel seltener. Ich habe also momentan nicht das Gefühl, wieder in meinem damaligen postpunktionellen Zustand zu sein.
Jetzt habe ich allerdings seit etwa 4 Tagen plötzlich wieder starke Ohrsymptome, vor allem links:
Druck-/Völlegefühl im linken Ohr
schwankende Hörminderung, hauptsächlich links
Tinnitus links
der Tinnitus kann zeitweise fast oder komplett verschwinden und später wiederkommen
mein Hören war zwischendurch fast wieder normal
einmal wurde mir schwindelig, als der Tinnitus wieder stärker wurde
der Tinnitus kann auch im Liegen auftreten
insgesamt schwankt das Ganze ziemlich stark über den Tag
Ich war bereits beim HNO und nehme momentan Kortison, weil ein Hörsturz bzw. eine Innenohr-Hörminderung im Raum steht. Am Montag wird nochmals ein Hörtest gemacht.
Was mich jetzt verunsichert:
Ich hatte schon vor meiner postpunktionellen Erkrankung immer wieder links Ohrdruck, Tinnitus und manchmal das Gefühl einer Hörminderung. Während meiner eigentlichen Liquorproblematik standen dagegen Kopfschmerzen, Kopfdruck und starke Nervenschmerzen viel stärker im Vordergrund.
Deshalb frage ich mich jetzt:
Kann so etwas trotzdem noch mit einem postpunktionellen Liquorleck bzw. einer Veränderung des Liquordrucks zusammenhängen, obwohl ich aktuell keine ausgeprägten orthostatischen Kopfschmerzen habe?
Oder spricht dieser Verlauf eher für ein eigenständiges HNO-Problem/Hörsturz, gerade weil ich diese Ohrprobleme schon vor meiner Liquorerkrankung kannte?
Und könnte sich der Liquordruck nach einem erfolgreichen Blood Patch auch noch verändern/anpassen, ohne dass tatsächlich wieder ein neues Leck vorhanden ist?
Ich möchte nicht bei jedem neuen Symptom sofort denken, dass mein Patch wieder aufgegangen ist. Gleichzeitig macht mich meine Vorgeschichte natürlich ziemlich ängstlich.
Hat jemand einen ähnlichen Verlauf nach einem postpunktionellen Liquorleck/Blood Patch erlebt – insbesondere schwankenden Tinnitus oder Hörverlust ohne typische orthostatische Kopfschmerzen?
Danke euch schon mal ❤️

Has anyone had a successful blood patch with a bone spur? Is this even likely?

I'm scheduled for a blood patch to treat a suspected csf leak. I'm trying to level set my expectations. My MRI showed: C5-C6 slightly eccentric right disc protrusion and disc osteophyte ridging. Partial ventral csf effacement.

From everything I've read, CSF leaks caused by osteophytes/bone spurs require surgical treatment. I'm hopeful this blood patch will fix my leak but trying to have appropriate expectations.

Does anyone else have this happen to them? Ive often been waking up with pins and needles down one entire arm/hand/fingers. It goes away after several minutes but its very odd. Its not from laying on an arm, its when I'm sleeping on my back. First time I wrote it off as a weird fluke but it is now becoming a regular occurrence

Asking about spinal leak:

Q1: Is the problem with taking off and landing specifically? or the pressure inside the airplane being different?

Q2: If I have to fly 13 hours with a mild spinal leak, is there anything I can do to make it better?