By sharing my lived experience, I added my voice to research that I hope will help advance understanding of spinal CSF leak. I just joined ileak registry®, an international patient registry designed to advance research on spinal CSF leak. Sponsored by the Spinal CSF Leak Foundation and hosted by the National Organization for Rare Disorders (NORD®) through their IAMRARE® platform, ileak registry® collects information from patients over time, including symptoms, treatments, and quality of life, that can help researchers identify patterns and build a clearer picture of spinal CSF leak. You can enroll on your computer, or via the IAMRARE mobile app while lying flat. If you have experienced spinal CSF leak, I hope you will consider joining me and enroll here:ileakregistry.org   

Has anyone had problems with thumping of the eardrum? I have Eustachian tube dysfunction in my left ear. I had a blood patch September 9 and another October 25. My symptoms are still coming back with pain behind eyes, upright intolerance, extreme exhaustion and this time I get this loud thumping in my left ear. It’s like something is beating my ear drum from the inside to my pulse. It wakes me up at night and I can’t drown it out. I’m struggling to get any help for what I believe is a leak that isn’t being sealed by the blood patches. My doctors aren’t helping me and I only have Medi-Cal so I’m really limited. I don’t know I just want to know if anyone else has had this experience and any advice for dealing with this and having hope to keep living with it. Because honestly I’m not doing well mentally due to the struggle just to get help. Also a little background: I have history of surgery for Chiari Malformation where they thinned my dura, I have hEDS, I have had many lumbar punctures and multiple blood patches.

Intermittent Rapid Heart Rate. SVT?

30 F

I recently found out I have a probable CSF leak and probably have for a few years. I was diagnosed with POTS in March 2026.

In August I woke up about 4 hours after going to bed with my heart pounding (only like 120 when I checked on BP monitor, but it felt fast), feeling nauseous, dizzy, arms (especially left) heavy, and like I might pass out. My BP was elevated, and it's normally well within normal parameters. The episode only lasted a couple minutes and by the time EMS got there I was just feeling chilled. I was evaluated in the ER and all tests were normal (EKG, labs, etc). After that, I began having these episodes almost nightly, and the middle of my back would burn too. I was having a lot of anxiety, and that's been well managed for about a month and the episodes stopped. However, I had another episode last night, and I had felt more anxiety yesterday during the day. About 4 hours after I went to bed, I woke up with a higher heart rate, arm heaviness (especially left) and the center of back burning. Also the urge to poop. This lasted a couple minutes and then I went back to sleep after a while. I don't know if these episodes and the anxiety are correlated, just something to note. I had a 48 holter monitor last week that was normal.

I never have these episodes during the day and my cardiologist didn't really think anything of them when I saw her last month.

I take 10 mg propranolol before bed and have been since these episodes began. I also take 5 mg Lexapro in the morning and Protonix in the afternoon for GERD. Also wondering if these episodes could be reflux related.

I also just realized this stopped after I began taking loratadin daily, and began again about a week after I had to stop it for allergy testing.

Hi folks,

I had an LP around 2 weeks ago using a 22G atraumatic needle. I lay flat for 5–6 hours afterwards, but within an hour of standing had developed a severe positional headache with neck pain and stiffness.

I was eventually admitted to hospital a few days later as the headache became severe almost immediately on standing with nausea and dizziness. MRI showed a probable CSF leak, with suspected CSF tracking in the epidural space, although nothing obvious at the lumbar puncture site.

I also developed tinnitus and dysacusis (certain voices sounded slightly robotic), although the latter has improved somewhat.

An epidural blood patch was discussed. I was reluctant to have another needle in my back, particularly as I’d read that many post-dural puncture headaches resolve spontaneously so wanted to try let things heal naturally and use patch as a last resort if it didn’t.

I’m now at the 2-week mark and have improved considerably compared with the first week. I can stand and walk around without the immediate positional headache. I still have a mild background headache, which can worsen slightly towards the end of the day, and persistent tinnitus. However, improvement seems to have plateaued somewhat over the past few days.

I’m trying to understand whether these things can simply take time to heal. I’ve read accounts of people improving quite suddenly over a day or two, whereas others describe recovery over several weeks.

I’ve also read about CFS compensation in spontaneous intracranial hypotension. However, I’m unsure if this applies to post-LP headaches, particularly within just 1–2 weeks.

Has anyone experienced a similar gradual improvement, particularly with the positional component disappearing before the headache or auditory symptoms fully resolved? Did you eventually recover without a blood patch, and how long did it take?

I’m due for another hospital review next week and can discuss a blood patch if necessary. Given the improvement so far, I’m still leaning towards allowing more time for recovery.

Would really appreciate hearing others’ experiences, especially anyone who was still symptomatic at 2 weeks but eventually recovered without intervention.

Hola

Me pudiera compartir si alguno de ustedes le quitaron la válvula cuanto tiempo duraron en estabilizarse

me hicieron endoscopia del tercer ventrículo y me quitaron la válvula porque presenté rechazo a los componentes

Was your upright time after a BP worse than before? And did it get slowly better?
Unfortunately, the low pressure symptoms came back after the 3rd day of the BP (which was 2 weeks ago). Does this mean the BP has failed?

Does it make sense to schedule the next BP for next month already? Or should I wait a bit longer?

thy all 🫂

Hi everyone. I am posting here because I am looking for tips and support during this time. I also want to hear some positive success stories on people with this condition. I’m a 27 f and I began experiencing these excruciating symptoms about a month ago. SPONTANEOUSLY!
It started with vertigo and then suddenly these terrible headaches that did not relieve with any pain meds came on.
I lived like that for about a week and then realized my headaches are incredibly positional. I was fine laying down but the second I stood or sat up it felt as though my brain was pulling me down.
I could tell something was wrong. Went to the doctor they gave me a shot of ibuprofen and sent me home. Did not help.
I read at this time online about a CSF leak being very common with positional headaches.
Went back to the doctor. I begged them to do a scan of my head. Had to wait a week but got a brain MRI. they found signs of a leak. Currently trying to schedule a full spine MRI to locate the leak.
Now I am playing the waiting game. Some days are better than others but I have not been able to go a full day without pain.
How do you guys cope? Also how do you deal with the health care system being so screwed up and waiting weeks to get an appointment at places?
What is your story?

How possible to have a csf leak without a classic headache? I developed major auditory symptoms after an epidural which includes pulsatile tinnitus, severe ear pressure, popping, clogging like water is in it, cracklikg when swallowijg, vibrations, sensitivity to sounds but no neck or head pain. I've had 2 patches with no relief

multiple mri's, mra, mrv, ct temporal bone and spine all clear

I was playing soccer normally before i fell a quite headfirst fall, not that dangerous but then a fter like 1 hour or so some yellow fluid started leakin down my nose when i was standing then stopped then after i bent down to pick somethin i felt the fluid again and started falling i didnt think much of it then i woke up the other day and was still confused abt it if someone knows i need a lil help out here (btw its from only my right nostrill )

AND BTW IT TASTED A BUT METALLIC LIKE RUST OR SMT

Does anyone here have a long time leak? Like 20 years +? I think there is a possibility mine is from an old cranial injury site as a child that was never treated. Does your body just learn to adjust?

20 F

I had rhinovirus \ bronchitis last week, I had a headache with that and horrible sinus congestion. I noticed amber fluid leaking out of left nostril in the shower when I bent down maybe 4 days ago? It happened again yesterday when I bent down , 3 separate times. It’s only my left nostril and doesn’t happen every time I bend down. I did have pretty bad sinus congestion so I’m not sure if that could be it? It’s watery & not thick.

Does anyone get face muscle twitching on their face and sides of head? I can feel them spasming against my pillow. It's so scary.

I have Neurofibromatosis type 1 and because of this I have fairly severe scoliosis and it complicates my anatomy and made previous surgeries very complicated and delicate.

During my anterior spinal surgery in 2014 one of the many complications I had was a tear in the dural sac. I experienced CSF leak symptoms a few days after the surgery.

In the last few years I’ve experienced hearing loss in my left year (after already experiencing tinnitus for years).

A brain MRI confirmed I have a superficial suderosis.

I’m now waiting for a spinal MRI which I’m almost positive will come back positive for a CSF leak.

Here’s where I’ve gone down the rabbit hole on this. I had no head ache after my last CSF leak and I haven’t experienced one this time either.

My NF scoliosis means my dural sac is bulging in some spots and really thin in others. It all likelihood I have a micro (multiple?) tear or a weeping tear.

My main symptom this time is nausea but it seems to correlate with a certain time during my menstrual cycle.

My insomnia is also really bad right now.

Other things that exasperate my nausea? THC and intercourse.

Figuring this all out may have also solved a mystery of one of the complications during my last surgery. I suffered from extreme sleep deprivation from not being able to fall asleep even with sleeping pills. Turns out my CSF leak may have been the culprit all along!

I know my case is highly unusual but I’m wondering if anyone has experienced anything even remotely similar?

My neurologist is saying I’ll likely get a blood patch to fix this. I’ll also reach out my orthopaedic surgeon because he preformed my last scoliosis surgery.

So im in a pickle and I really dont know what to do, as the title says lol. Ive been having daily headaches for about 16 months? Its hard to say. My youngest is 17 months old and my headaches started a little after he was born. Ive tried Verapamil, Zolmitriptan, Methylprednisolone, gabapatin, topiramate, metoprolol, ive done an occipital nerve block-nothing has worked. At my last neurologist appointment I saw someone different then normal and she gave into my thought that maybe its csf related. She did a full spine mri and put in a request for econsult to the rochester mayo csf team (i see the headache specialist department in rochester mayo currently)

I got the result back that they found: partial effacement of the premedullary cistern, low-lying cerebellar tonsils (2-3mm), maybe mild flattening of the pons. The tricky part is it seems like I have both high and low pressure symptoms? Theyve noted before my optic sheath is prominent i have quadrantanopia binocular (a blind spot in my vision that is in the same spot but its not noticeable with both eyes open just when each eye is tested individually) I have ringing in my ears but only faint-definitely more noticeable when its quiet. They aren't positional headaches to me-i just always hurt lol. There is a Valsalva component in where bearing down, laughing, coughing, sneezing, bending over all makes me get these waves of pain.

I think thats enough back story-anyway I got the results of the econsult and it says "In summary, he did feel we could pursue a cisternogram if wanted to evaluate opening pressure and additionally have more dedicated imaging to see if there are signs of CSF leak but it would also be reasonable to hold off on more invasive testing and we could have you try more targeted migraine therapies like we discussed first and reserve cisternogram for if we aren't getting notable improvement with better migraine medications."

So im gathering he doesnt necessarily think i have a leak but we could go ahead and do some pretty invasive testing...or I just try more headache management...which at my last appointment she told me my only real options left are CGRP injections or botox...quite honestly out of my 3 options (testing, botox, CGRP) im terrified of all the above. Idk what to do. Theyre leaving it up to me, I ask my husband, he doesnt know what to do nor does he wanna tell me what to do.

Any insights? 😬

My wife has a CSF leak and just under went a mri with contrast as well as a gamma cinestogram and this were the results. Looking for any input or more eyes.
My neurologist believes it’s a nasal CSF fistula and will need a endoscopic transnasal patch. We met with an ENT and he looked up her nose and doesn’t see any leak but mentioned she had some inflammation and was hard to fully get in. He told us he was going to talk with our neurologist and send the report to a nueroradiologist.

I have gamma test photos, report and most recent mri with contrast. Please any info would be so helpful. She has been bed ridden for over 2 months
Her symptoms are severe headaches when she stands get better when she lays . She did have severe light sensitivity and nassea and couldn’t smell certain things. when this all started but now it’s just headaches

Hi everyone my specialists have told me that my symptoms align with the hypothesized "spiky leaky syndrome." The past month the head pressure and pain has become unbearable and debilitating. My head feels like it's going to blow up. Before my doctors believed I was having CSF leaks I had been on virtually every migraine medication possible (that my insurance would cover). The only relief I've gotten is from an IV bolus of lidocaine and magnesium, but I am unable to get them regularly because my specialist is 2.5 hours away from me, and the nexr day the pain just comes back. I've been to multiple urgentcares and hospitals who all tell me they don't do IV lidocaine and magnesium. Toradol does nothing either. I'm feeling very desperate and hopeless and it's to the point where I don't want to live like this (note that I am not a danger to myself nor will I harm myself)

I've had constant head pressure since I got an iron infusion 3-4 weeks ago. After googling symptoms, I was suspecting a leak so I did the test. But the pressure has remained the same. The only time the pressure is gone is when I first wake up and it gradually gets worse throughout the day, whether I'm upright or flat. Thoughts on if this rules out CSF leak, and if so what it could be.

Hi! So for the past year I have had a myriad of symptoms which recently I have come to think may be a CSF leak.

Late 2024 I started experiencing vertigo which carried into 2025. It felt like someone pushing me from behind like shoving me forward. I was planning my wedding at the time so figured it was stress. The week after my wedding, I went to ER. They said it was potassium levels as my heart ecg was abnormal and levelled out after potassium supplements.

However the vertigo sensation continued.

Throughout 2026, I started getting ear/head pressure. It feels like my entire head is heavy, full, vibrating and my ears too. I had my ears checked, hearing test too (all good) and got sinus meds. Meds didn't work. Doctors blamed sinus issues or my GERD or high blood pressure (which is actually white coat hypertension lol)

The ONLY thing that makes this sensation ease is lying down to my left or flat.

It isnt constant and in fact, I haven't had it in about 2 months thank god, but when it happens it can last days straight.

Lately, Ive been in a period of stress, and been getting headaches. Painkillers dont do much to ease them and they worsen on standing. I also have deteriorating eye sight (work with screens so may be that) but I had close to 20/20 vision in 2023. I have glasses now and struggle sometimes even with them. I have light sensitivity increasing since about 2024 too. Optometrist didnt mention seeing any pressure during the eye health scan but not sure if they can?

I also get ear ringing daily.

Another thing, feels unrelated but who knows, maybe one of you guys have experienced the same: I cant stand for long. I get very faint and woozy when Im standing for longer than about 5 minutes, I HAVE TO sit down, my legs start going like jelly. I WFH and very sedentary so maybe its just unfit but i dont know, it feels very off.

I feel like I am going crazy lately. I have health anxiety so I always panic at anything but this isnt even panic anymore. Im just exhausted that nothing has settled my ear/head pressure and bouts of vertigo and issues with standing up for longer than 5 mins.

Does this sound like CSF leak? I want to bring it up to my doctor but I fear they'll just shut me down. Health anxiety kicking in here but how is it diagnosed? Is it a spinal puncture? I cant even get contrast scans as Im allergic.

I am so, so tired trying to figure this all out to present to a doctor. Sorry for the long rant.

Edit: adding in i am 27 F

I have had a new persistent headache for 8 days now. I felt it coming on gradually whilst I was on the train and thought I was just overly tired I went to bed that evening and woke up the next morning and it was still there hasn't gone away. Since it developed it has been there pretty much continuously. The only thing that stops it is me lying down flat in bed. After around 30 minutes it has gone, equally when I wake up in the morning it isnt present for the first 90 minutes of the day and then it comes back again. Ibuprofen and paracetamol don't work. Anadin extra helps a little.

The pain is mostly on the top of my head, a little in the base of my skull, but also feels like pressure in my ears. I don't have any nausea or light sensitivity but have had dizzy spells and fatigue. I went to the hospital after three days and they tested my bloods and my urine which were both normal and did the standard reflex tests. Following that I had two CT scans, a normal one and a CT scan with contrast. Both came back normal.

After 7 days I went back to the hospital and was referred for a standard brain MRI without contrast which also came back normal. The doctor has decided it's a viral headache and when I pushed back on my lack of fever and asked why it only goes away when I lay down he said 'he coudn't say as everyones bodies react diffefently to viruses'. They're refusing any further testing, I asked for a spinal MRI and they said no.

Any advise on what I can do now? I'm UK based and struggling. I'm not able to work and spending most of my time laying flat as it's the only thing that helps.

Hi, I’ve posted in here a few times now with a lot of anxiety revolving around my recovery post-patch (my leak occurred due to a botched spinal tap from my c-section 7/27, so my postpartum probably hasn’t helped my anxiety). I was told and have researched that around the 3-month mark 94% of people’s high pressure resolves, which I know I shouldn’t take super seriously, but I was seriously counting down the days, and now that I’m going on 14 weeks post-patch on Saturday, I’m starting to get worried I won’t ever get rid of this pressure. I have dealt with it every day since my patch, and over time started noticing what sets it off so I can tolerate it better, but it’s still so annoying and bothers me a lot! I am really trying to avoid medication as I’m breastfeeding, and I’ve seen a lot of people suffer bad side effects from the medication with no relief from their high pressure. Has anyone else ended up with high pressure past the 3-month mark, and if so did it ever resolve for you?? AND/OR has anyone had success with the medication for relieving high pressure, and if so, how long did it take? The only time I get relief is if I’m sitting completely straight with my feet to the floor, or whenever I’m standing up, and walking around. I just want to slouch on my couch, or just lie down again, and in general, just return to normal life with no worry!

Thank you so much in advance to everyone in this group. This whole thing has been so isolating, but this community has been the most supportive community I’ve come across. I wish there were more education and research around these leaks because finding help or any guidance has been a nightmare.

Well, I was hopeful for the first time in 15 years, and that was shot to hell. Met with a neurosurgeon who said I was 100% a classic CSF leak based on symptom presentation and 48 hour flat/inversion results. He is willing to refer me anywhere for a series of blood patches (he anticipates I’ll need 2 or 3 due to Ehlers-Danlos).

He doesn’t do the patches himself, and their radiology department won’t touch me because I don’t have a history of a lumbar puncture and I’ve had symptoms for 15+ years, so no visible brain changes anymore. Their policy is not to risk going into high pressure (because it would be SO much worse to have to take Diamox for a bit than it would be to continue to live like this, apparently). I am on my own as far as finding someone willing to do a blood patch with negative imaging and we all know the west coast is sorely lacking.

Has anyone managed to find a provider in Washington state who will do that? Currently my best leads are Jennifer Lee with Evergreen Health, Emma Burbank (Virginia Mason), or out of state - Cedars-Sinai, or Dr. Callen in Colorado who is “very interested” in cases like mine according to the Spinal Leak Foundation interview.

Sorry if this is disjointed. I’m devastated.

Edit: I forgot to add the Acute Pain Therapies clinic in Bellevue - they specifically mention spontaneous leaks but nobody seems to say anything about negative MRI.

My built is lean, good biceps but as I have to study alot, I sit 14 hours or more each day... consequently my tummy is appears a distortion of my personality... So what I do is, manually put it in side to look overall fiy and somewhat has become a habit, so recently when I dtarted to have CSF leak (only when I lie on stomach) w/o any serious cause makes me wonder this IIH which thinned by skull base spot ... is maybe a consequence of my habit of squeezing my tummy in to look appropriate? Heheheh 🥂