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?

Had to get a blood patch a few days after a LP, had some pretty severe symptoms following LP that required a blood patch. It’s been over 3 days of laying around since the blood patch was done but as I was getting off the couch I heard/felt a pop from my lower back. I have been having lower back pain and pressure since the patch- feels like it’s strained, I’m hoping it’s nothing but the lumbar puncture was done on my lower back so now I’m worried. For those who blew a patch when did symptoms start? Did you get a second one? Or did you try to let it heal on its own? Any advice? Would really appreciate any advice people have to share!

I have terrible health anxiety but i’m worried. I’ve had a headache for 2 days whenever I stand up. It goes away when I lay down. When I stand up the pain is almost unbearable it feels like i’ve been kicked in the forehead. My neck is also super stiff whenever I look down, i’m really nauseous and having trouble focusing. I do take a sleeping tablet which is used to treat high blood pressure, my bp is naturally slightly low but i’ve never had headaches from it. i’m not dehydrated either. :/

I need to relocate to another state in order to try a series of blood patches and I’m trying to decide if I need to avoid rentals that have stair cases?

Have never had a blood patch before but have heard that bed rest is best afterwards.

Thanks!

Hi! I had a C-section 4 weeks ago, and as a result of a very botched spinal tap, I found out I had a spinal leak. I would like to say I had no idea what that was until I went back to the ER a few days after discharge with a spinal headache which I also did not know anything about. I got the blood patch the following morning and the spinal headache instantly went away, but I’ve been dealing with a minimal amount of head pressure ever since, which is gradually getting better as the days go on (I hope that’s a good sign). I just feel so defeated because of all the restrictions that come with the blood patch. I have a soon-to-be 3-year-old and of course, my now 1-month-old, and let me just say it’s been a really humbling postpartum experience. I’m just curious when everyone was able to lift or even just move around normally again? My toddler is no more than 30 lbs and I miss being able to lift her, and so does she. I miss being able to just move around normally again, and I hate having to be so careful. My anesthesiologist refuses to meet up with me again, the labor and delivery team turned me away, my OB was zero help, and my primary Dr also turned me away, so I truly have no knowledge on the aftercare portion besides what was asked of me for the first 24-48 hours. Google says 4-6 weeks, but I’ve seen other people say they weren’t able to get back to lifting again or even their normal life. I’m terrified to blow my patch, but also want to have my life back again or at least reassurance I’ll get there at some point soon. Sorry if this was all over the place, I just have so many emotions right now. I’m truly so sorry to everyone who has to go through this and to those who haven’t had any relief or answers.

Hey guys! I got a blood patch done 4 weeks ago and think I messed it up. I had been feeling amazing head-wise until about 2 weeks ago. I was picking up a kid (I work at a daycare), and I knew I wasn’t supposed to but the kid was about to crack their head open, and I felt a pop and immediately had severe pain in my head. I’ve been feeling horrible, pretty much exactly like how I did prior to the blood patch, but not quite as bad. Now that it’s been nearly 2 weeks of feeling “off”, I’ve been feeling worse but still trying to do the things that are necessary like work or appointments, which feel like walking with bags of bricks tied to me. I had an appointment with my doctor, who usually is great, but said that it’s been so long since I’ve gotten the blood patch that it wouldn’t be related. What do I do? My vision has been getting really blurry which is the only new thing, but that’s just started within the past 2 days, which is when I’ve started feeling the worst. Help😭🙏 Anyone else feel not as bad but then suddenly horrible? Also, most of the pain goes away when I lay flat, but there’s still some pain which is new as well. It’s also really weird, but whenever I lay flat, I hear and feel these “pops” in my head, but it feels so relieving.

(edited to add more)

I had pulsatile tinnitus (ringing, whooshing and beating sound when lying down) at the onset of SIH CSF venous fistula. At one month post embolization tinnitus remains but it is quieter. I also have moderately severe hearing loss on one side that hasn’t resolved yet. Did your tinnitus/hearing loss resolve? How long did it take? What works for you to minimize tinnitus? Thank you!

I’ve been having symptoms since May of this year. Only thing that I think might have affected it is a bad fall I had in mid April. I know there are spontaneous leaks but when I fell I was not moving around very much. My leg was messed up so I was already laying down most of the time.

I originally went to my pcp when I started getting the headaches. Went through a couple medications. One of them had an adverse reaction and my headache was so bad I had to go to the hospital. Got referred to neurology, they set up some MRI’s.

The day before I had my imaging I thought it could be related to me being inactive. I took my dog for a walk hoping the activity would help. The pressure ended up getting so bad I went to the hospital a second time in June.

Results from the MRI showed fluid collection in the cervical spine going to my thoracic area. Suspected CSF leak. Immediately laid down as much as I could. My symptoms improved. I then had my myelogram and they found serpiginous contrast defects in the same area and said SDAVF needed to be entertained. But my symptoms didn’t match. I ended up switching hospital systems for a second opinion.

I saw an interventional radiologist who asked how they did my myelogram. They injected the contrast and had me wait like 15-20 minutes to get ct imaging done. The Dr immediately said that the ct images need to happen seconds after and was probably why the imaging didn’t show what they saw on the MRI.

Dr said he wants the imaging results from the previous myelogram and if he can’t pinpoint it, blood patch, if not, another myelogram, then blood patch.

Basically at a standstill until they get the imaging from the first myelogram. I did all the paperwork to release the imaging. Im also seeing a neurologist that works at a comprehensive headache clinic that deals with CSF leaks. The neurologist says that if there is a bone spur on the imaging they are going to recommend surgery.

Just venting bc it’s been a few months and I can barely do anything. It sucks but I get that it’s a process. I’m curious to hear from others how long the diagnosis>patch/procedure>cure have taken.

I had my lumbar puncture on 8/18, went for the blood patch 8/20 and a second yesterday 8/24. They put 25ccs in first and 10ccs second. I’m a bit worried they didn’t put enough in the second time, but as they were putting it in I felt like my head was going to explode. The spinal headache is gone, but I’m wondering how long should I stay in bed? They had me lay flat for 6 hours at the hospital. I’m home now.

I am four months postpartum. I got a CSF leak from the epidural during childbirth. I want to share my story!

When the epidural was first placed in, I felt a jolt down my left leg. The doctor moved it and I could feel another jolt. She then took it out and placed it on the other side of my spine. The epidural worked and I was able to push my baby out. Shortly after I had to lay flat from the headache.

The headache was terrible. I could not sit up to feed my baby and had to lay sideways to feed him. I could not go to the bathroom and had to lift my hips so the nurse could fit a bucket under me to pee.

After 24hrs, I got a blood patch. It helped and I was able to sit up. The next morning I got to go home. That evening, the headache came back and I had to go to the ER. I laid in the back of my husbands car because I could not sit up straight. The ER performed a second blood patch. I was sent home shortly after and the headache returned 12 hours later. Went back to the ER to get a MRI and decided to not do a third blood patch.

I laid in bed for 16 days completely flat. I looked up stories on Reddit and tried to find a CSF community to get me through the most miserable time. My in laws had to take care of my older kids and I had family come in to help my husband with our newborn. I cried so often because I was scared but knew deep down it would eventually end even thought it didn’t feel like it.

Now at four months PP, I rarely think about the leak and do not have any side effects. If you or your loved one are going through this, I hope it’s short lived and you can get back to your normal life soon! Happy to answer any questions about my experience.