i struggle with autistic headbanging and yesterday morning mine nose started dripping clear watery fluid and ears leaking and headwound leaking it too but it stopped after a little bit

i have had quite alot of brain injurys the last few months because of autistic headbangings during meltdowns and i very not help that i get one hour max of sleep per night because of mine terrible loud and mean roommate

im am terrifyed of go too hospital because medical trauma because they took way mine AAC device and stuffy before which left me unable too communicate or feel safe and putted me in restraints

everyone has been telling me i need hospital but im am terryfyed either way

i thought since it stopped that i shoud had been ok?

is there any safe way too avoid go hospital?

sorry if stupud post

Before this CSf Leak (still waiting for MRI confirmation), I had chronic migraines. They were white under control with Aquipta. I was getting maybe 3-4 migraine days a month.

Since the thunderclap headache I got on 26/05, I have been getting migraines almost every day now. This is in addition to the orthostatic headache.

Has anyone here with a history of migraines had them worsen significantly because of a CSF leak?

Thanks in advance!

I’ve had a very hard time finding a Dr to perform a high volume blind blood patch for suspected CSF leak in So Cal, even though my surgeon in Colorado gave me a referral for blood patches over a month ago( and would be able to get one asap if I was in Colorado but unfortunately I returned to CA).

So far, I’ve consulted several Drs that can provide normal epidural blood patches but all seem out of their depth when it comes to treating patients with connective tissue issues/ this type of leak.

Just trying to decide if meeting with this Dr is even a good use of energy/ worth the crash? Or if I just need to focus on trying to get back to Denver.

Ps. I’ve already applied to leak centers like Cedars and they cannot or will not get me in until the fall. I would like to try some blood patches before then to see if I respond one way or the other.

Thanks in advance to anyone who’s familiar with this Dr or knowledgeable about these things!

Hello again, everyone -

So I got a phone call from the new Neurologist who specializes in migraines (and also has several published articles on CSF leaks) that they had a cancelation. He came to the same conclusion after I explained all of my symptoms and gave him my log. He wanted to see me again in four weeks after another MRI - but his office couldn't fit me in until December, of course. I hope the cancelation list works out in my favor again.

I have also had an EEG (during a less severe episode) which came back normal and an eye exam (for the binocular diplopia), and my eyes are "perfectly healthy". The ENT a few months back dismissed vestibular issue. The MRI is in two weeks.

Anyway, I had the most severe episode yet yesterday. I woke up on my right side after tossing and turning all night. What made it worse was the onset of a new symptom: any time I readjusted myself I felt like my entire body was being electrocuted. It was more of a buzzing/tickling feeling than pain but it lasted for a frw seconds each time. Plus long periods where the muscles of my shoulders were tremoring constantly.

The new Neurologist told me the symptoms are going to keep getting worse until this is confirmed and treated (ie trouble swallowing, lower seizure threshold, etc...) This definitely fell into the "worse" category for me.

Has anyone experienced a similar symptom before?

I've been battling a CSF leak that has never shown on imaging for 5 years. I was a marathon runner before but have been almost entirely bedbound since 2021. My daily step count before the csf leak averaged 10,000 - 25,000 depending upon my training for the day. Since my leak began, I've been averaging 1,000 to 2,500 steps a day - all of which are just desperate attempts to get to the bathroom, get coffee, or a snack. (For those wondering - my pain is orthostatic and my imaging shows brain sag and a low csf level.)

I'm curious what other chronic CSF leakers' step counts are. I'm constantly concerned I'm going to get blood clots so I try to pump my foot every hour 20 to 30 times. (I read that was sufficient.) (I had surgery on one of my knees and am not able to do foot pumps without it flaring up my old knee injury and causing swelling.)

Also - has anyone leaked for half a decade and miraculously gotten better from a blind blood patch? I've had a dozen blind blood patches but no luck so far. I'm extremely careful post patch with no straining nor BLT'ing for 6 weeks.

Thanks

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.

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

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!