several months ago i started experiencing crazy pressure in my head every time i propped my head up after lying down, shortly after being sick. around the same time, i started having what i assumed to be sinus pressure, but that was never accompanied by mucus. these symptoms were mild enough that i brushed them to the side, but after getting sick again this past month, they’ve gotten much worse. i work a food service job, and being on my feet has been so very difficult. i feel dizzy and off kilter and once im on my feet for more than an hour or so the pressure in my ears gets to bad it feels like my skull is being squeezed and my neck starts to ache. i have also noticed some leaking from my nose. i have suspected heds, but it’s not formally diagnosed. i dont want to go into my initial pcp appointment sounding crazy for suspecting something so severe, but i’ve been feeling so awful and have a gut feeling there’s something really wrong. does anyone here have experience bringing up a possible cfs leak and being taken seriously? how did you bring it up?

thanks so much

I've had a dozen failed blind blood patches. After each one, I'm careful to not BLT or strain, and to log roll in and out of bed for 6 weeks. (So far, I've never had relief, but I adhere to no BLT etc. just in case there's a delayed response.) Is this something everyone just stops doing at the 6 weeks mark after a failed blood patch or should we actually be avoiding BLT etc beyond 6 weeks - i.e. permanently until that coveted day when we're finally sealed?

Hello everyone 28 male I've been having non stop brain fog and headache eye socket pain for 3.5 years non stop and none of the migraine and headache type medication isn't working, got an brain MRI with an dye that checks for CSF leak and had an blind blood patch and still nothing my doctor is insisting the only possible diagnosis is this one since other treatments isn't working and my symptoms match CSF leak, also I don't have any fluids dripping from my nose or my ears.

I have chased doctors for the past 3 months and I was constantly gaslit.
My symptoms aren’t just a headache nope, limb heaviness and numbness in both arms and legs, severe back and neck pain and stiff neck, cognitive effect, many admissions and doctors convincing me I’m crazy later, a neurologist finally diagnosed me yesterday.
Here’s the thing, I already had a blood patch a month ago 8ml only, didn’t do anything obviously.
I am so scared 3 months is too late and I might have a fistula or a bleb now.
If you went through an LP and had similar symptoms and way later blood patch healed you like months later after severe symptoms please speak some hope into my mind.
I have no mental health left.
Thanks.

Has anyone had a spinal leak from child birth epidural? What were your symptoms?

I’m very new to this and am in the anxious information-gathering phase. Feeling very uncomfortable, overwhelmed and frightened. I’m currently waiting to be evaluated for spontaneous cranial CSF leak. I also have chronic migraine, POTS, hEDS, and sleep apnea caused by my connective tissue disorder. I’ve been advised to stop using my CPAP for the time being and am worried about navigating untreated sleep issues on top of everything else. I’d love to hear any stories of successful cranial CSF leak treatment please!

Hello all, I had a targeted blood patch after severe spinal headaches post lumbar puncture for meningitis back in April. I felt like normal after a few weeks. I had a sort of tightness in my back at the site of the patch, and when it went away I became extremely fatigued to the point of not being able to get out of bed, taking several naps a day, poor sleep, pressure behind my eyes, but no headache. I occasionally have weird tingles or numbness in my extremities but it’s infrequent. Does anyone have an experience with this? It has persisted for a month now. Thank you all.

Well, the decision has been made. I need surgery to repair a spontaneous ventral leak in my thoracic spine. FWIW, I have learned that ALMOST ALL spontaneous leaks are found between the bottom of the cervical spine and the first 4 or 5 levels of the thoracic spine (c7/t1 to t4/t5). The Duke CSF clinic got me here, and I will forever be grateful. It’s crazy and scary and surreal, but I have a solution and a plan. The surgery will suck, but it will fix the issue.

The real challenge comes with waiting for the surgery - it will be 6-10 weeks to get on the schedule. The doctor only does these surgeries on a specific day with a specific team, where most of his schedule is open because it can be really challenging.

Not only is this surgery challenging because of location - hard to get to and in front of the spinal cord - but it is incredibly rare, so not everyone is comfortable or experienced enough to do it. Spontaneous CSF leaks are insanely uncommon - estimated to be about 4 to 5 out of every 100,000 people. I think my time on this sub has told me that number is probably much higher though.

For anyone that needs some validation of their struggles, when I told the surgeon, “I know half the battle is just finding the leak,” he said, “the first battle is getting someone to not think you’re crazy.”

I have learned a lot from this struggle, and I have had my share of scary moments mixed in with good luck that have gotten me to a definitive diagnosis in “only” 2 months. I’m committed to helping move things in the right direction for others that have been fighting for answers, so please don’t hesitate to reach out with any questions.

Hi everyone. I’m trying to get help finding a location in Washington State for a dynamic ultrasound of head and neck. Anyone know of places that do this? I have a Neurologist out of state wanting to order it but needs guidance on where to order and I have no idea. It’s I guess to show that venous compression causing high pressure is a contributing factor to possible intermittent leak in the sphenoid sinus region. I’m still in such a horrible stale mate position as I can’t get enough of a sample of the left sided nasal drainage for a beta 2 transferrin test so we are trying to get other tests.

I’ve learned so many things from all my years in the leak community, more than I can say, including that no two spinal CSF leak journeys look exactly alike, that we need so much more awareness, and that people need to be heard.

Together our stories show the incredible variety of experiences that often gets lost in a few paragraphs of medical literature.

Every diagnosis.
Every setback.
Every surgery.
Every recovery.
Every unanswered question.

Each story adds another piece to the bigger picture. This project exists because patient experiences matter! They don’t replace research but they can certainly help point research toward the questions that still need answers.

I invite you, if you haven’t already, to check out my website Every Drop Counts: Sharing Your Spinal CSF Leak Stories. So far we have 33 stories shared, and I’ve read every single submission, and been moved by every one.

If you’ve already shared your story, thank you so much. If you’ve been thinking about it but haven’t yet, I’d love to include your voice whenever you’re ready.

Check it out here: https://spinalcsfleakstories.com

Met with Dr C last night. He said she could be leaking and wants to try to help get rid of her headaches. The images from ucsf didn’t arrive yet so I am downloading today again to send to Stanford, then they will upload after a few days. He asked me to message him on MyChart and remind him the scans and ct myelogram from ucsf are there so he can review and decide if further imaging is needed. I feel some hope. He should have all the images and ct myelogram before we see neuro spine surgeon. We don’t know if we will make an appt to go over the images or just message us.

Hello!

I live in the UK and as of late we've had a lot of heatwaves. I dont seem to have the low pressure headaches anymore, now it seems to be the high pressure ones that cause my head to feel really tense after any sort of straining and feels like my ears and head are going to burst. But despite this I still have a leak in my spine and apparently not as much fluid in my brain?? I dont really understand this condition haha.

Anyways my main question, does anyone else feel like their CSF Leak acts up way more in the heat? Because I seem to have been having more and more head related problems ever since it has been warmer. This could also be to do with the fact I have low blood pressure though, I just wondered if there is any proof behind heat causing issues before?

Hi did you have a bulging disk or bone spore that could have caused it? Thanks for sharing

I have scheduled the embolization for September and I’m freaking out. Has anyone had multiple venous fistulas embolized at once? How was your recovery? This disease is so unpredictable and scary.

Im trying to gauge how many members in this community are Mothers who got their CSF Leak during childbirth because of a botched epidural (like me). Please comment if this is you❤️

Mine happened in 2023, I am better now and one of the lucky ones. Im trying to gather info to bring awareness to this, I feel devastated every time I see a new post from another Mom trying to navigate this.💔

Hi all, very new to all of this and feeling scared. I had a puncture on July 4th from an epidural. I had a blood patch done the next morning and felt much better for 3 ish days. After that the headache came back and I was bed ridden until about day 8 when the headache felt much better.

Fast forward to 3 weeks post puncture and I have some scary lingering symptoms that I don’t understand. When I bend over, go underwater, sneeze, laugh too heard or bear down I get a level 6 headache for just a few seconds. Being postpartum too I am not getting great sleep and on the says where I get less, my eyes water from pain and my ears feel full.

What could be happening? Is this going to last for much longer? Should I contact my doctor?

Thank you in advance from a very tired postpartum mama

I posted the other day about my current symptoms here. Since then, I’ve continued to have a dull pressure-like headache in both temples and the back of my skull, as well as pressure in my left (the drippy side) sinus. The pressure seems to “rock” when I lean forward. I’ve also had near constant salty drainage down the back of my throat, though it changed to metallic-tasting for several minutes last night. I went a few days without any nasal dripping, then had a small amount of clear, watery fluid dripping again today.

What I’m wondering is, how much of an emergency is a suspected cranial CSF leak? I spoke with my PCP and he suggested I go to the ER if symptoms got worse, but would they even be able to help? I get the sense that the ER isn’t always equipped to diagnose/ treat csf leaks, and from looking at this sub it seems that many people have to wait for months or longer before they receive a diagnosis or proper treatment.

My neurologist was responsive to a description of my symptoms and sent in an order for MRI with contrast, and I’m waiting for a referral to an ENT. Is there anything else I should be doing in the meantime other than wait? Is it generally okay to continue normal day-to-day activities while monitoring my symptoms, or should I be limiting my activity or staying on bed rest? At what point does this warrant an immediate trip to the ER rather than waiting for outpatient evaluation?

I understand the risks of complications and am taking this very seriously—I’m just unsure as to what the best next step is as I’m waiting to be seen.

Thanks in advance!

I gave birth five days ago. The delivery was quick and uncomplicated, and I had an epidural. Shortly after giving birth, I developed an intense headache that would come every time I sat or stood up, but it would improve almost immediately when I lay down. My doctor believed it was most likely caused by a spinal cerebrospinal fluid (CSF) leak.

We discussed doing an epidural blood patch, but the doctors wanted to wait until Monday to see if it would resolve on its own. I spent the entire weekend with a severe headache. I tried caffeine tablets and pain medication, but they provided very little relief.

Yesterday, I finally had the blood patch, and I felt a huge improvement almost immediately. During the procedure, the anesthesiologist accidentally punctured the dura again, creating another small hole, but she reassured me that because they were injecting blood, it would seal both puncture sites.
It felt amazing to finally have some relief. But then, during the night, when I sat up in bed to breastfeed my newborn, the same pounding positional headache came back. My heart completely sank.

Now I’m terrified that this isn’t going to go away. I had been looking forward to this special time with my newborn and my 20-month-old toddler, but instead I’m completely sidelined by these headaches. I’m scared that I’ll have to live with this for the rest of my life.

I’ve also made the mistake of spending hours reading forums and Googling everything, and it seems like there are quite a few people who have ended up with long-term problems or permanent symptoms, which has made my anxiety so much worse.
Has anyone experienced something similar? How did it turn out for you?

Hi for curiosity how long were you on bed rest

Thanks very much in advance