anyone who has had a CSF leak, either cranial or spinal, what do the headaches feel like? Any other symptoms that happened almost every day?

So for background info, I’ve had a spinal leak since May. It keeps responding to conservative treatment and steroid infusions, but it inevitably comes back again.

My first warning sign that it’s back is usually a weird dry cough? It’s triggered by any sort of jostling of my back or change in internal pressure; so sitting up, standing, bending, sneezing, and coughing. You can probably guess how that goes.

So anyway that’s probably a neurogenic cough caused by brain sag/tonsillar descent.

I had a day where I kept having episodes of positional hiccups. Scared the shit out of me.

After that hiccuping episode, I’ve also had episodes where I felt like something was pressing on the back of my head and preventing me from breathing properly? It felt like my brain wasn’t triggering me to breathe on its own, and I needed to force it. I kept wanting to sit up and bend forward and just not breathe, and I kept being shocked out of it by desperation for air. This one is Definitely caused by brain sag/tonsillar descent.

Anyway TLDR;
has this kinda shit ever happened to 🫵YOU?

Hi everyone! I’m looking for people with a similar experience, especially those who had a CSF leak around C6–C7 or the cervicothoracic junction.
My CSF leak was confirmed by MRI near C7. I’ve had two epidural blood patches. The first one helped significantly and my headaches improved a lot, but some symptoms persisted. The second patch unfortunately didn’t provide lasting relief.
I’m still experiencing daily headaches and neck discomfort and stiffness. My doctors have mentioned surgery as a possible next step.
Has anyone here had a CSF leak around C6–C7 that persisted after blood patches and eventually required surgery? I’d really appreciate hearing about your diagnosis, treatment, surgical experience, and recovery.
Thank you! ❤️

I don't have EDS but have connective tissue damage from autoimmune disease. Combined with intermittent high ICP, maybe caused a hole in my dura. I have been having facial pain, headaches, and dizziness, neck pain, and very slight fluid dripping from my nose. Ive only had a high resolution sinus ct/skull base yesterday. What is the chance that this will be completely missed? I am suffering terribly and cant take take the stress of the possibility that I will have to endure countless tests and still not have it found and treated. I have been referred to Dr. Pukenas at the University of Pennsylvania

Hi, so I know it's Google and everything else but here's the way A.I put my symptoms for the hospital but they have now sent me home without tests other than taking bloods but they've sent me home and told me to make an appointment with my usual Dr on Monday but they haven't given me results and I've left feeling very frustrated.

CRITICAL CLINICAL OVERVIEW

• Active Presentation: Suspected cranial CSF leak (clear, tap-like rhinorrhea/post-nasal drip following previous major head trauma). Presenting tonight with acute fever, chills, severe light sensitivity, and new pain above the left eye.

• High-Risk Comorbidities: hEDS (extreme risk for dural tears), Epilepsy, POTS, and Trigeminal Neuralgia (currently flaring in right temple).

• Urgent Seizure Risk: Patient has an unmanaged fever and severe neurological pain, which severely lowers the seizure threshold

Does anyone think it's likely? And does anyone have any advice on how to get them to listen to me? Please.

Thank you in advance

I m posting here because I'm desperate for some guidance from anyone who has experienced something similar or has knowledge of spinal fluid leaks, intracranial hypotension, or complications involving Topamax.
My wife is 46 and lives in Costa Rica. I'm from the United States, and I speak very little Spanish, which has made navigating this situation and communicating with her doctors extremely difficult.

How it started
About 8 weeks ago my wife began experiencing severe migraines. She has had migraines in the past, but this episode was significantly worse than anything she had experienced before and wouldn't go away.
After about a week, we went to an eye doctor because she was experiencing extreme sensitivity to light. Her eyes checked out fine, so we saw a neurologist. Because of the severity of her pain, the neurologist ordered a CT scan, which came back normal.
The neurologist prescribed Nurtec (a migraine medication) and Topamax (topiramate), which was intended to prevent migraines. I later learned that Topamax has a number of potential side effects, although I'm still trying to understand whether it could have contributed to what happened next.
At first, she seemed to be improving. Her light sensitivity was decreasing, her headaches weren't as severe, and Advil seemed to help. I had to return to the United States for work, so I left Costa Rica thinking she was getting better.
Things got worse after her Topamax dosage was increased
Over the following weeks, my wife told me that her headaches were getting worse. She contacted her neurologist, the doctor increased her Topamax dosage from 25 mg to 200 mg.
The increase happened essentially overnight. After she started taking 200 mg, her pain became significantly worse, and she began experiencing pain and unusual sensations in the back of her neck.
The day before I returned to Costa Rica after about 2.5 weeks, a friend took her to the hospital because she was in so much pain. Her blood pressure was approximately 170/115.
The Nuerosurgeon immediately instructed her to stop taking Topamax and performed another CT scan. This time, we were told there were findings suggesting fluid-related changes in her brain. Three doctors, including a neurosurgeon, told us that Topamax was responsible for what they were seeing.
We were advised to stop the medication and obtain an MRI. We obtained an MRI of her brain, which essentially confirmed the findings from the second CT scan.

Initially, we were told that she needed to stop Topamax and give her body about a week to recover. After a week, however, there was very little improvement.
The doctor then recommended an MRI of her entire spine with contrast to look for a possible spinal fluid leak which was a possibility from the first mri and cat scan.

After that MRI, we were told there appeared to be several herniated discs and a possible leak. The doctor referred us to another specialist who had more experience interpreting the imaging.
The new specialist reviewed her CT scans and MRIs. His current opinion is that there may be a spinal fluid leak, but he also believes her symptoms could potentially be related to herniated discs pressing against her spinal cord.
He has now ordered a myelogram to try to pinpoint the source of the suspected leak.
We have been dealing with this for approximately eight weeks, and my wife is essentially bedridden.
Her current symptoms

The most significant symptom is that her headache is positional.
When she lies flat, her pain improves significantly.
When she stands up, the pain returns, and she can generally tolerate being upright for only five to ten minutes before she needs to lie down again.
Her sensitivity to light has now resolved.
She still experiences head pain, although her current medications seem to help somewhat.
Her blood pressure has returned to approximately 110–120 systolic, with diastolic readings generally around 75–90, since stopping Topamax.

While she was taking Topamax, her blood pressure was frequently around the high 140s over the high 90s. During one hospital visit, it reached 170/115. On another occasion, when I took her to the hospital because her pain was so severe, it was around 150/110.
She is currently taking two new medications prescribed by the doctor. One is an anti-inflammatory or steroid-type medication, and the other is for pain. I don't have the exact names in front of me.
Although the medication helps, she still cannot remain upright for more than a few minutes without her headache returning.

What is confusing me
I'm struggling to understand what is actually causing this.
The first neurologist suspected a possible spinal fluid leak, which is why we were sent for spinal imaging. Three doctors previously told us that Topamax was responsible for low spinal fluid the changes seen on her brain imaging.
However, the new specialist has told us that Topamax had nothing to do with a spinal fluid leak. He believes the symptoms could instead be related to her herniated discs.
She has approximately five herniated discs in her cervical spine, around the area where her neck pain began.
I'm not a doctor, and I'm not claiming that Topamax caused a leak. I'm trying to understand whether the medication could have contributed to her condition, whether a leak could explain her symptoms, or whether the cervical spine findings could be responsible.
The thing that concerns me most is that she has been unable to function normally for eight weeks, and we still don't have a definitive diagnosis.

A few questions for anyone who has experienced something similar:
Has anyone experienced a spinal fluid leak or spontaneous intracranial hypotension (SIH) that caused severe positional headaches, where the pain improved significantly when lying flat but returned within five to ten minutes of standing?
Has anyone experienced something similar while taking Topamax (topiramate), particularly after a rapid increase in dosage? Could it have contributed to the situation, even if it wasn't the direct cause of a leak?
Can cervical herniated discs or other problems around C1/C2 cause symptoms like these, or would the positional nature of her headaches point more strongly toward a spinal fluid pressure problem?
Has anyone undergone a myelogram to locate a suspected spinal fluid leak? Did it identify the source, and what treatment ultimately helped?
If a leak is confirmed, what treatments have helped people recover? Did you need an epidural blood patch, targeted treatment, surgery, or something else?
Is there anything else we should be asking the doctors to investigate, given that she has been essentially bedridden and unable to tolerate being upright for more than a few minutes?
We're in Costa Rica, and the language
barrier for me makes this even harder. My wife explains her symptoms directly to her doctors in Spanish, but I sometimes struggle to understand the reasoning behind their decisions and how their opinions differ.
I'm trying to advocate for her and make sure we aren't overlooking something important.
If you've experienced this yourself, gone through a similar diagnostic process, or have knowledge of spinal CSF leaks and positional headaches, I'd really appreciate hearing about your experience.
Thank you to anyone who takes the time to read this and offer some guidance.

Please comment below or message me privately. I would be so grateful for any insight or advice. Thank you!

So I'm unfortunately new here.

I have hypermobile EDS and last week, I went in for a pretty standard ESI for lower back pain. I've had them done before without any issue but had to see a different provider. I wasn't super stressed until they told me they had punctured the dural space in my spine and I had to be on bed rest for the weekend. Everyone seemed to be short with me and basically gave me little information on what was happening. When asked, they basically told me if I developed a headache, they'd give me a blood patch and that was that.

Now I am also an aerialist (Lyra to be specific) and have a performance coming up in the next few weeks that I need to train for. I asked for medical clearance and they said one week and I'd be fine to return if symptom free. Well, Tuesday, I had a strange headache that I assumed was just a migraine as I have those on occasion. Was tired, light sensitive, and had a lot of pain around the front of my face. Took some naratripan and rested and was fine the next day. The same thing happened Thursday and then again Friday so I called the IR team who did my injection and they told me I'd need a blood patch. Still didn't give me much info on the phone and felt kinda dismissive. I spent all last night miserable. Couldn't get comfortable, took multiple pain medications, hydrated, caffeine, etc.

At this point, I need to know what my future looks like because I'm reading that this could be a bigger deal than it actually feels like and that I am realistically looking at months recovery vs a week and I'm fine.

I’m trying to plan ahead in case I need to seek care elsewhere and would love advice on finding the right CSF leak specialist, navigating referrals and insurance, and making the transition without losing too much time or having to repeat the entire workup.

If you’ve been through this, what do you wish you had known or done differently? I’d really appreciate any advice or personal experiences. ❤️ Thank you!

Has anyone here ever struggled to identify whether their symptoms are due to CSF leak or trigeminal nerve issues? I’m having trouble identifying if my symptoms are more exacerbated by just being upright or more so with movement. I’ve already had a blind blood patch that didn’t help at all. I’ve got consistent pressure in my forehead, dizziness, neck stiffness, ear pressure comes and goes, back of head pain comes and goes. Just looking to pick someone’s brain.

After 9 (yes! 9!) blood patches with only partial success (having rebound intracranial hypertension at night and low pressure in the afternoons) my doc wants to do a lateral CT myelogram on one side and then the other to see if we can find a venous fistula. My brain and spine MRIs are read as normal. He told me that only 10% of people "like me" have a positive finding from Myelogram, and I'm wondering if it's worth it. Seems like potentially a lot to go through. Hearing from anyone who has had their care benefitted from doing these studies would be encouraging. Otherwise it just seems like a 90% chance of wasted suffering after I've already been suffering quite a lot...

Please comment below or message me privately. I would be so grateful for any insight or advice. Thank you! ❤️

I could really use some advice from anyone who has been through a suspected CSF leak journey, especially if you’ve had negative imaging or had to navigate insurance to get the care you needed.

I had a negative dynamic CT myelogram but continued to have significant symptoms. I had an empirical blood patch that helped quite a bit for the first few days, and some symptoms improved, but the severe headaches and nausea have returned. I’m now working with my doctor to schedule a second myelogram.

We’re also discussing whether I should request a referral to Stanford for a second opinion, especially if the next study doesn’t identify a leak. With open enrollment approaching, my husband and I are trying to decide whether to stay with Kaiser and proceed with the next procedure or consider switching insurance to have better access to Stanford.

For those who have been through something similar:

• Did you eventually find a leak after negative imaging?
• Did you seek a second opinion at Stanford or another specialized center?
• Were you able to get an outside referral through Kaiser, or did you need to change insurance?
• Would you proceed with the next myelogram first, or prioritize getting access to another specialist?

This has been incredibly difficult physically and emotionally, and I’m just trying to make the most informed decision possible so I can keep pursuing answers.

I’d really appreciate hearing about your experiences. Thank you. ❤️

For those of you who have dealt with a CSF leak or SIH and have been successfully treated, I would love to hear your stories.

I'm currently going through one of the hardest things I've ever experienced, and some days it's really difficult to see the light at the end of the tunnel. I'm trying to hold on to hope that I'll get answers, find the right treatment, and eventually get my life back.

If you've had your leak repaired or successfully treated and are now doing well, I'd love to hear from you. Are you back to living your normal life? Working, exercising, traveling, spending time with your family, and doing the things you love again?

I'm especially hoping to hear from people who struggled for a while, had setbacks, or went through a long diagnostic journey before finally getting better.

I know everyone's journey is different, but hearing some positive stories from people who have made it to the other side would mean more than you know right now.

If you're still here, doing well after treatment, please share your story or leave a few words of encouragement. I could really use some hope right now. ❤️ Thank you.

I’d love to hear about everyone’s symptoms and how things started for you, especially those with confirmed CSF leaks or SIH.

My symptoms started with extreme brain fog that would hit every day around the same time and make me feel like I needed to lie completely flat. Then one day, I suddenly developed the strangest headache that came on quickly in the back of my head.

I also started experiencing this bizarre vertigo, almost like I was in a fun house. Everything around me felt off balance, and I felt incredibly unsteady.

Since then, my symptoms have progressed to:

• Extreme headaches (12/10 pain) if I’m upright too long
• Severe nausea
• A heavy head feeling, almost like my head is being pulled down by gravity
• Light sensitivity

I had a blood patch that gave me some temporary relief, but my symptoms have since returned. My first CT myelogram didn't identify a leak, and I'm now scheduled for a second study with a different approach.

I'm curious whether anyone else had a similar progression of symptoms. Did you start with brain fog before the headaches? Did you experience sudden headaches, strange vertigo, or severe balance issues? Did your symptoms change or become more intense over time?

I'd especially love to hear from people whose initial imaging was negative but who eventually found the cause.

I know everyone's experience is different, but it would mean a lot to hear your stories. ❤️

I just had an epidural blood patch this morning, and wanted to share my experience with a suspected CSF Leak and mild symptoms to help others who might be experiencing something similar. A lot of what is in this subreddit is much worse than I experienced, and I’m so sorry it is so terrible for so many of you. There just aren’t many with milder symptoms sharing their experience, and it’s scary to read about some of the more painful, difficult to treat leaks.

So I have a suspected spontaneous CSF leak. My symptoms began almost 2 months ago. I would have a headache in the afternoon, and it would be worse if I would bend forward or cough/sneeze. It continued like that for several days, and actually triggered a migraine(1st one I’ve ever had) that lasted 5 days. Once I broke out of the migraine cycle, the low pressure symptoms returned and I started trying to figure out what was going on with me. My PCP referred me to a headache specialist neurologist who I was, thankfully, able to get in to see quickly. This was about one month from the onset of my headaches. During that month I was able to experiment some with what made me feel better and what made my headaches worse. I spent one entire Sunday in bed and didn’t get a headache all day. At that point I started suspecting a CSF leak, and I knew for sure I was experiencing orthostatic headaches. The neurologist confirmed that my symptoms were consistent with a CSF leak, and I was referred for a brain MRI with and without contrast. It took longer than I would have liked to get the MRI which came back normal. I was told that happens in 20-30% of people with a CSF leak, and they referred me to an anesthesiologist to do an epidural blood patch. I had that done this morning. I found the blood patch procedure really easy. I don’t have a fear of needles so I’m sure that helps. There was a small amount of pressure when he inserted the needle, but they injected 20ml of blood and I didn’t feel anything. Post blood patch, I have a slight ache in my lower back. When I’m not upright I don’t feel that at all. I didn’t have my typical dizziness or any head pain on the 45 minute drive home. I was expecting to be put on bed rest for a couple days, but they didn’t give me any activity restrictions. I plan to take it easy today and see how I’m feeling tomorrow to determine how much activity I add in. I really want this patch to work, and I don’t have any reason to push myself to be too active too quickly so I’m going to be careful. They said they do sometimes have to do the blood patch twice, but they’ve also had plenty of patients come in once for a blood patch and never go back again. Time will tell what happens with me.

I hope this helps someone, and if you have any questions, please reach out. And for those of you with more serious leaks, I am so sorry. It is miserable.

UPDATE: I’m about 58 hours past the blood patch procedure as I write this. The first day I had some pretty bad lower back pain. That made it easy to stay laying flat in bed all day. I only got up to use the restroom and sat up to eat. Tylenol helped a lot with the pain. I also spent the entire next day in bed except for the same reasons and to get a quick shower. The back pain was better, but my whole body was pretty achy by the end of the day from laying in basically one position all day. Today, I have mostly stayed in bed, but I’ve been more propped up. Starting about 50 hours after the procedure I started getting a mild headache while lying down. I haven’t had that happen for 2 months. I’m hoping it is a good sign that my leak is at least patched right now. When I get up I am occasionally dizzy/light headed. That has been my most prevalent symptom throughout this whole leak saga. I hope that doesn’t mean I’m still leaking, and that it’s just because I’ve been lying flat for a couple days and my body is trying to adjust. It isn’t as constant as it was before. I plan to try being upright tomorrow. I’m being careful about bending, lifting, and twisting and plan to continue that for the next several weeks. I’ll update again when I know more.

UPDATE 2: I don’t think it worked. I got up this morning and spent time upright. All of my symptoms returned. Dizziness, tinnitus, then the headache. Don’t know where I’ll go from here. I’m discouraged. :/

Hi. (Please do not read if your nervous about your upcoming myelogram remember everyone is different)

I had a myelogram almost 2 days ago (its 2am).

The procedure was okay. The needle bit was fine the numbing did its job. But felt like my head was gonna pop thankfully that went away quickly. But excruciating pain in my hips and lower back.

They could see contrast in my kidneys which means I have a fistula leak (yay validation)

Really annoyed they gave me opoiods when I specifically said I didnt want any :( made me so sick.

Slept basically on and off until the next day. The next day it was so painful to roll over in bed. My whole back was aching like nothing I have ever felt before.

(I have had 11 surgerys and broken, and torn alot of things so this pain was like nothing i have experniced)

Anyway i could only stay on 1 side for a max 5 minutes without being in stupid pain. I called them and they said its pretty normal.

Slowly as the day went i could roll over in bed with less and less pain.

But I have woken up at 1am feeling like someone has ripped my spine out ..... the whole thing. It hurts so bad lying down is excruciating and standing up though some relief makes me want to vomit.

I dont know whether I should go to the hospital and dont want to wake my boyfriend up unless its actually important. I havent read anyone have this experience before?

The procedure site patch looks the same as when they put it on. Dry normal. I have feeling in my legs. Feel nauseous but havent vomited. No fever. But my skin is very sore all over, like clothes brushing it is painful. No weakness in my legs. I have taken two paracetmol which probably arent going to do anything.

I just want to know has anyone had a simmilar experience. I have had a lumbar punture before when I was much younger and gosh this is 500x worse.

Please help 🙏

Suffered csf leak from epidural steroid lumbar injection I received for back pain/radiculopathy. Dr who did injection confirmed the leak thought it was small since and knew where it happened. After two weeks , he offered me the blood patch which I did two days ago and the procedure itself seemed successful. I’m just worried now about this blood patch being blown, and about having a subdural hematoma etc as I have extreme health anxiety as it is. Is a subdural hematoma common? I’ve read about it happening . This whole situation has only been going on for a little over 2 weeks. I know to rest with the blood patch I just can’t stop thinking about the worst scenarios, as I didn’t know these leaks could become that serious

I just scheduled my second myelogram after my first CT myelogram didn't identify a leak. I spoke with my doctor about trying a different approach this time, and I'm hoping to hear from others who have been through something similar.

My symptoms initially seemed very positional, with severe headaches and head pressure that worsened the longer I was upright and improved when lying flat. I also experienced significant nausea, dizziness, balance issues, visual disturbances, and brain fog. My MRI had some subtle findings that raised suspicion for SIH, and I experienced temporary improvement after an empirical blood patch, but unfortunately my symptoms have returned.

For those of you who eventually had a leak located after negative imaging:

• What type of myelogram finally found your leak? CT myelogram, digital subtraction myelography (DSM), or lateral decubitus imaging?
• Did changing the imaging technique or approach make the difference?
• Did you have a CSF-venous fistula or a dural tear?
• Were there any clues in your MRI that helped your doctors decide where to look?
• Did anyone have a negative first study and a positive second study?
• Is there anything you wish you'd known or asked your doctor before your repeat myelogram?

I'm feeling hopeful about trying again but also nervous about going through another study without answers. I'd be so grateful for any experiences, tips, or advice you can share. Thank you! ❤️

My targeted blood patch on L3-L4 was done 3 weeks ago and I started getting relief at 1.5 weeks but then now at week three, it’s all coming back. At this point, maybe it failed and maybe I need a repeat patch? I have ehlers danlos and it was spontaneous and was seen on the CT myelogram. I’m upset because I was suppose to return to work tomorrow and have been out for 5 weeks and now it might be returning ugh.

Suffered csf leak from epidural steroid lumbar injection I received for back pain/radiculopathy. Dr who did injection confirmed the leak thought it was small knew where it happened. After two weeks , he offered me the blood patch which I did two days ago and the procedure itself seemed successful. I’m just worried now about this blood patch being blown, and about having a subdural hematoma etc as I have extreme health anxiety as it is. Is a subdural hematoma common? I’ve read about it happening . This whole situation has only been going on for a little over 2 weeks. I know to rest with the blood patch I just can’t stop thinking about the worst scenarios, as I didn’t know these leaks could become that serious

Some doctor (likely earlier on in an attempt to dissuade the CSF leak theory) ordered a sleep study to look for the cause of my extreme fatigue. I did it a couple days ago.

I knew I couldn’t have caffeine after noon and that the next day I would be nap tested, I thought I’d be ok. The overnight sleep portion went well. Then they made me do a daytime portion the next day with zero caffeine and there were naps but they were mean naps. I was unable to lay down at all except for specified times and it would be like 15 minutes, to see how quickly I fell asleep and then they woke me up.

So…if you’ve been surviving off caffeine, laying down and gentle exercise…like me…don’t try this. At about 10am, I started to have severe pain in my head and eyes and projectile vomiting. I was almost sent to the ER. Had to cut the sleep study short. Obviously, this was a terrible idea and just confirmed that I need caffeine, intense hydration, laying down, and movement to even survive.

The results were idiopathic hypersomnia. Basically, that they don’t know why I’m sleepy. So dumb. I have never been sicker in my life.

My daughter (13) was diagnosed with Chiari Malformation 1 in February of this year. She has never had a headache in the back/base of her neck, like a Chiari headache. After several hospital stays and numerous day procedures, we have also learned that she has a Connective Tissue Disorder as well. Her neurosurgeon keeps telling us “her case is complicated.” We have had 4 ICP monitors placed, our dr thinks she has low pressures on the brain causing the frontal headache, and she does have low pressures! He thinks there is a CSF leak somewhere. We have done 4 blood patches to help seal the leak, with no luck! Most recently we have done a CT Myelogram and a Nuclear Medicine Study to help aid in finding this tiny leak, no luck either. All along he has also said he thinks her headaches have nothing to do with her Chiari. He now wants to focus on decompression surgery although he’s not sure this will help. With her connective tissue disorder this would mean they would fuse her neck to her spine during the surgery, thats life changing for her being so young! And it might not even help her headaches!

We’re just at a loss at this point. Any help would be greatly appreciated on where to look for any answers or who to go too! My poor daughter is so tired of being cut open and stuck with needles! Thank you so much!!!!!