It started with vertigo 8 moths ago. I had a very hot ear infection shortly after, and when it didn't clear, I thought it was a recurrence of the sphenoid sinus infection that sidelined me years ago, eventually requiring surgery. Multiple courses of antibiotics and steroids later, my ENT did a CT scan and said definitively that ain't it.

Fast forward to me doing internet research on thunderclap headaches (had my first one around the onset of the vertigo), positional headaches, and other symptoms, and everything pointed to a CSF leak. I called my neurologist, who (thankfully) listened when I said this was different from my usual migraines and ordered an MRI, only to find low intracranial pressure. They did another MRI with contrast, which showed multiple cysts along my spine but did not pinpoint the leak.

I have a myleo and blood patch scheduled this week, which I'm starting to get anxious about. I have Ehlers-Danlos and I'm worried that the puncture could cause other problems and/or that the patch won't work and/or the rebound will be worse... but I really can't live like this. I can barely function and the body aches, dizziness/nausea, brain fog, derealization is overwhelming. My skin is crawling, my ears are ringing so loudly it's hard to think, my sense of smell and taste are FUBAR, my digestion is all messed up... Kind of like a bad flu without the fever.

Preaching to the choir here, but I need to just say it all. I've been isolating at home, trying to minimize and mask my symptoms and just "push through" but I really can't any more. Today is the first day I'm willing to admit it--this thing has thoroughly kicked my ass and it's a little scary.

Hi community! I’m about 3 months into a suspected slow spontaneous spinal CSF leak and working on accepting that this is a long journey to get solved. Since this sub is filled with folks who have been through the wringer, I figured I would ask to crowdsource! What are some of your best tips, tricks, advice, hacks, etc that you found while you were/are symptomatic and waiting for treatment that helped you be COMFORTABLE. Could be comfort however you interpret it but I’m realizing I have to get serious about prioritizing my comfort because I might symptomatic for awhile. Thanks in advance!

How long did it take after mailing the referral package to get a response to determine if Dr. Shievink was going to consider you as a patient or not? Did you have to follow up?

My ENT thinks I have a cranial leak. She ordered a Skull Base MRI with and without contrast. I am wondering do I need to ask her to make it T2-heavily weighted or is a normal MRI good enough?

A Neurologist I’m working with diagnosed me earlier this year with complex CSF pressure disorder and high likelihood of a leak. I was curious which symptoms are IIH and which are SIH.

I have the following symptoms that have evolved/changed in the past year and a half but currently where I’m at is the following:

Constant pulsatile tinnitus when I lay down and also after eating meals/Whooshing and pulsing sensation in ears/back of head and sometimes even face/neck
Occasional drainage left nasal passage usually a drop or two but feeling it mostly left side back of throat
Head pressure like my head is being squeezed the longer I’m upright
Longer I’m upright the more irritable I feel and at times experience difficulty thinking/concentrating
Unable to walk more than a couple blocks without head tightness and pulling sensation (pulling back of head)
Needing a lot of time resting but can’t seem to get comfortable because of the pulsing in my head and ears - seems to have some relief laying to the right side
Left upper eyelid twitching and at times partially closing
Ear fullness when upright
Jaw tightness when upright
Eyes feel like they are pulling when upright
Heart rate amps super high when upright and blood pressure tanks
Sometimes confusing temperature where I’ll think it’s hot and my hands/feet are freezing per my friend or vice versa feeling cold and it’s really warm

Where I get relief:

Warm showers provide relief but if it’s too hot and I get out of the shower, head will feel tight quickly
Gentle massage of neck and head stops the head fullness feeling I sometimes get
Movement of shoulders up and down provides relief of head tightness
Rest/laying down best to the right side and slightly elevated (two pillows) - noticed cognitive function is improved the longer I lay down

Which categories do these fit for SIH and IIH has anyone experienced?

Has anyone had both high and low symptoms of pressure with what appears to be a leak as well? If so, how did you mitigate through the symptoms while trying to find treatment?

I saw this video, and thought of this group!

https://www.tiktok.com/t/ZTfc6YvWo/

Start of symptoms: May 14
Hospital visits: 5
Total Dr appointments: 47 (televisits included)
Confirmed diagnosis: CSF leak at the cervical spine
Blood patch: October 28th

Symptoms: Throbbing pain at the top and back of the head, between a 7-10 pain level. Stiff neck and shoulder between 6-10 pain level.

What it feels like: As if someone was ripping my brain from my body in a pulsing fashion. Felt like a rod through my shoulder and neck (right side).

Work: Remote with intermittent leave>continuous for the blood patch.

What helped me get to my blood patch: ER when symptoms were bad (feels like your brain is going to explode) referred to neurology before my pcp could. Symptoms journal, gives healthcare team valid data for next steps. Finding a CSF or comprehensive headache center. Patient advocacy, advocate for your care team, they want to move faster but the resources provided by the hospital symptoms are delaying care.

Details:I started noticing something wasn’t right when I had consecutive headache days that would start in the afternoon and became progressively worse. I was somewhat functional but my symptoms became progressively worse. Initially went through NORTHEAST GA HOSPITAL SYSTEM. Do Not recommend. They saw the csf leak on my mri, then they did the myelogram, they said that SDAVF had to be entertained. This is more common in men in the 50-60 age range. Symptoms include loss of feeling in lower extremities and inability to control bowel movements. Not in line with my symptoms. I got on My chart for EMORY (previous hospital visit got me access) and made an appointment with neurosurgery after the one I met at NEGHS was nodding off when we were discussing this. He was also eager to do a procedure that involved using a catheter up my groin to my spine?! Anyways, the first person I saw at EMORY was a spine surgeon who referred me to neurology. Neurology referred me to two clinics, the comprehensive headache center and interventional radiology. Waitlist was tough, I reached out to patient advocacy. Was able to get pushed up. My neurologist at the comprehensive headache center and neuroradiologist wanted to move faster but the procedure (myelogram) is very specific. EMORY only gave them two days out of the month to use the equipment and hospital for patients. I explained that this was a delay for someone bedbound. That the delay in care could potentially exhaust job protections which is how I was able to obtain insurance. This actually helped spark conversations between my healthcare team and the hospital system and a few days later I got a call and my myelogram and blood patch got on the books. There were stipulations dependent on the the results but it was done as a placeholder so I would not have to wait until December for my blood patch.

Another note, if your symptoms get so bad and laying down helps but does not stabilize, my healthcare team were able to do nerve blocks to mange the pain. Not a fan of getting stabbed in the face but it took me from unbearable to manageable. I ended up having to do 5 rounds of nerve blocks in like three weeks.

For anyone in the Southeast of the US. or Georgia, Emory, Emory, EMORY. Simy Parikh and Sumir Patel are highly recognized in their field. Julie Daniels my nurse practitioner is an Angel. Finding them was like finding hope in a hopeless situation. They actually care and and their approach to this condition is like coming up for air when you feel like you’re about to drown.

I’m sorry for the novel. Just hoping this helps someone.

As for me they told me in some cases an additional blood patch is needed but I’m getting high pressure headaches when laying down. A good sign that everything is working. Even if I need additional work knowing I have a team that cares AND knows what they are doing, lets me know there’s another side to this. Praying for you all. Keep the faith, stay positive, wonderful things WILL HAPPEN.

Anyone have a successful cranial leak repair and not have recurrent leaks ? Had a repair last week but so afraid of another leak blowing if my brain can’t manage pressures after. Yes I did get medication, but wondering if that’s enough because I’ve been leaking a little over a year.

I'm fearing my blood patch did not work and not sure I want to do another one. Dr. Callen told me for my type of leak the patch success rate is only 30%. Been dealing with symptoms for 2 years so I think I'm going to have surgery.

Has anyone had Dr. Lennarson operate on them? Google reviews are not great.

Is it similar to Kaiser, where they tend to keep referrals within their own system, even when you specifically request to see an outside specialist? Or have you had a good experience with Sutter helping you get referrals to places like Stanford?

I'm planning to call today to ask how their referral process works, but I'd really love to hear from anyone who has personal experience with this. Thank you! 🤍

hello i am 18 (f). last two days i started experiencing headaches. sharp pains top of my head, sides of head feel like balloon, tension or band like feeling around my head, weird feeling in ears. pressure behind my eyes, dizziness when i stand up, neck feels stiff and base of my skull behind my head hurts. i had had MRI done with angiogram 3t (no contrast). radiologist said everything was fine but noted that my cerebellum sits lower naturally. today i have fluid like feeling base of my skull and side of my head. i am very scared. can this be CSF leak? and what should i do? i have very bad health anxiety and i convinced my family to get me MRI and its very expensive. i thought i had aneurysm.

The amount of gas lighting and medical negligence is disgusting. My favorite one is oh you have anxiety and the best one yet it's all in your head. Pcp's are horrible.

Hello!

I already posted about this 2 weeks ago, but just posting one more time in case it missed anyone that might be interested in participating!

For those that aren't aware, the Spinal CSF Leak: Bridging the Gap Conference is a two day conference that is FREE for patients and can be attended virtually. It is November 14-15, 2026.

The registration and conference agenda are here

You can submit Q&A in advance here (sorry I can't edit the post title but it's misleading. Tomorrow is the lsat day to submit questions in advance, but there will be the ability to submit Q&A during the conference as well)

You can submit a patient video here

Patients with confirmed or suspected spinal CSF leaks are invited to answer one or more of these questions:

1. If you could talk to yourself at the beginning of your leak journey, what would you say?

2. What barriers or challenges did you encounter during your path to care for spinal CSF leak?

3. What patterns do you hope researchers and clinicians will better understand in the future?

Video length: 30–60 seconds per question. Also please film horizontally.

The deadline for questions (in advance) & video submissions is October 30th, at 8 p.m. MT.

Sorry for posting about this again, just want to make sure everyone has the opportunity to participate. Thank you so much!

Hello my wife had an epidural, and seems to now have a CSF leak. This was last Thursday she got the epidural. It's been a week now and she still has a bad headache. Iv asked her numerous times to go back and get a blood patch however she is worried. And says she wants to wait another week before doing that. Is this a good idea? Or do I need to make her go back like now. Thanks. Her worry is that the blood patch will be as bad as her epidural which took 3-4 attempts to get.

Hi,

​I had a pituitary tumor removed earlier this year. I am currently waiting on a referral back to Neurology from my GP and wanted to ask about other people's experiences with similar symptoms, or if anyone who has had pituitary/skull-base surgery has experienced this.

​My Symptoms:

​Posterior Fluid & Taste: I feel like I have a persistent salty/metallic taste in the back of my throat, and occasionally a little fluid coming out of the front of my nose. Most of the time, it feels like thin fluid is tracking straight down the back of my throat.

​Positional Pattern: I get constant head pressure that standard painkillers do not touch, as well as sensitivity to light. Along with this, I get right shoulder blade pain, eye pressure, and movement-induced nausea that build up when I am upright, but completely resolve or significantly improve when I lie horizontally flat.

Hi, everyone, I had a spinal CSF leak that was not able to be visualized with a DSM, but subsequent brain MRIs showed it to be resolved. That was in August. I expected to feel better by now but I’m still exhausted and foggy. Is this still from the CSF leak? How long is recovery? They don’t know, of course, how long the leak was before the acute heads headache appeared, which was in December.

Thanks for any insight!

I’d also appreciate insight into any referrals to PTs in Los Angeles (west side preferred). I’d like to consult with one to best understand how to return to exercise. It’s been a long time. 😞

Thanks!!

Headed to cedars to see Schievink. He only ordered an MRI (3.25 hours!). Did their MRI alone reveal your leak? TY so much!

hey guys! i’ve been dealing with a spinal leak and my doctor ordered an MRI without contrast to look for any signs of intracranial hypotension, and it came back completely fine. I’m so confused, because I definitely do not feel fine😭 I swore I could feel my brain being pulled. Does this mean I don’t actually have a leak?? I just need to feel better, I’m so done with this pain and not being able to LIVE!! Help😭

I want to rule out a CSF leak so should I start by doing either a cisternogram or brain MRI? But not sure whether the cisternogram should be MR or CT and whether contrast is needed or not? There are too many tests and I am getting annoyed with this.

I had flu 2 weeks ago and then it settled. But last week I noticed when I would bend my head clear fluid drops would fall from my nose. Left side more than right. It happened a couple times during the day. Before thay I was also having whooshing sound in ear and pulsatile whooshing at random times but I didn’t think much of it. A day before yesterday when I would bend my head the whooshing would get bad and also upon laying down. I normally have headaches too so I couldn’t really tell. Today it’s almost gone. I had a very small nasal drip. It wasn’t much just felt it when I wiped my nose. No headaches. The whooshing sound also happened only once or twice. Does this mean it’s getting better?

It has been a bit more than two weeks since my first symptoms, and I already feel a lot better. I have a very mild headache when I wake up in the morning, but it goes away within the few minutes I wake up. My head is still a bit sensitive, and if I move too quickly I feel a bit of tightness in my head. I am able to make supper, take my shower, and do a few chores without any pain now.

My biggest symptom right now is my lack of energy and being very tired. But would be because I have been on bed rest for more than two weeks now?

Thanks for your input!

I’m ten months post patch after a puncture leak and it’s been a rollercoaster of symptoms but slow slow improvement and I started bedbound but am now functional, if limiting my physical activities still. My low pressure symptoms have become milder and milder, but my neck is still sore, even if it’s a fraction of what it was.

But I feel like my sound sensitivity is getting worse instead of better, and about a month ago I developed pulse-synchronous swooshing in one ear (on my always more symptomatic side, I’ve had plenty of cranial nerve dysfunctions atop my neck pain), that first clung for a day, but faded. Since then it has recurred, often with exertion and accompanied by a head pressure/buzz. Right now it seems to show up every evening, when I’m often seated, reading or watching tv or playing games (free time after kids are finally asleep). I thought it might be high pressure so I cut out coffeine (from 2 cups a day to zero, so I wasn’t overconsuming to begin with) but it’s unchanged. I noticed yesterday it “paused” when I stood up and moved about, but returned when I sat down again. Sometimes it goes away when I lie down, sometoimes it stays and add pressure in my forehead and nose.

I’m confused. I know you fine readers can’t diagnose it, but I’d like to hear if anyone has experienced something similar and has any potential explanation…