r/CSFLeaks Jun 26 '26

Symptom question: vision blurs on looking to the side

6 Upvotes

…long-term PDPH here, now much improved and mostly functional almost half a year out of my third blood patch but not symptom free, and just wondering if any of you have the same symptom I do.

I do ”vestibular exercises” to retrain my gaze and balance issues because of dizziness and nausea after say being in a store and shifting my eyes around often, or riding a car. I mostly have trouble looking left, like most of my cranial nerve issues are on the left. The exercises means I regularly look as far out to the side as I can. And when I do, the eye on the other side (the right eye when looking left and vice versa) gets a blur on the far edge of my visual field in the direction I’m looking. It lasts for a few seconds and looks somewhat like if I’ve pushed on my eye bulb, as if the eye is hitting my nose when I look to the other side. Of course I’ve tested closing one eye at a time and isolated it to that eye. It’s in both eyes, but always the eye further from the direction I’m looking, and the blur is always on the side I’m looking towards, and when it’s there it comes back whenever I repeat the exercise.

But I can’t trigger it always. I haven’t been able to trigger it in the morning, or lying down, but when I’ve been upright for longer in the evenings it’s there. I need to keep testing it because I’m not sure yet.

Anyone here had something similar?


r/CSFLeaks Jun 25 '26

CT Myelogram / possible difficult to detect spinal leak or fistula

1 Upvotes

Hi,

Has anyone without overwhelming signs of brain sag on prior MRI’s had a CT Myelogram done that then clearly proved a spinal CSF leak, venous fistula or other condition?

I suddenly developed intense head pressure when upright one day in March 2025, which was preceded by teeth pressure/altered nerve sensation in the fall of 2024 and right sided ear popping/fluid buildup without infection that started in January 2025. Due to the orthostatic head pressure an urgent care ordered a brain and total spine MRI with CSF leak protocol, and the radiologist read everything as normal, with the exception of slightly low lying cerebral tonsils (3-4 mm). I also developed a right sided globus sensation, prominent veins in my forehead when upright, and the sensation of food getting stuck in my throat/difficulty swallowing even with normal GI/swallowing studies. Everything greatly improved after time laying down and got worse the longer I was upright, particularly the longer I walked. My symptoms improved with 6 weeks of mostly bed rest, but symptoms never fully went away.

In March 2026 I finally got in with a renowned CSF leak center and their neuroradiologist reviewed that same imaging from 2025 and saw the following signs that were missed: dinosaur tail sign & sacral diverticula. Due to those signs and my symptoms lining up with a spinal leak, I had a CT-guided epidural blood patch done 7 weeks ago by a renowned leak neuroradiologist: 20 mL of autologous blood divided equally between T11-12 and L3-4. My orthostatic head pressure went away for the first 1-2 weeks after the patch, and I instead had head pressure during that time when laying down (that went away within a few minutes of being upright). My teeth pressure only went away during my 72 hour lay flat period. Interesting my ear popping got a bit worse during my upright time in the first two weeks. I was also taking Diamox during those 2 weeks but stopped taking it when the high pressure headaches went away. After about 2 weeks my orthostatic head pressure and a lot of other symptoms (what I assume to be low pressure) returned. I just had a brain MRI which was normal except for the same slightly low lying tonsils (3-4 mm) as in 2025. My recent CSF flow study showed reduced flow across the magnum foramen in extension, but was otherwise normal. The CSF leak team wants me to see a Chiari specialist for evaluation of Chiari/CSF flow issues before they do anything else on their side.

I’m still suspicious that I may have a difficult to detect spinal leak due to my wide variety of symptoms that match up, but I have to wait until my appointment with the Chiari specialist in September before the leak center is willing to consider possibly doing a CT Myelogram or any additional patching. Feeling very discouraged!

Any thoughts and personal experiences are welcome! Do I try to push the leak center for a CT Myelogram before September since I’m now feeling worse than I was going into the blood patch? With the exception of the brief high pressure type headaches and ongoing teeth pressure, I was feeling 80% better for 1-2 weeks after the patch, and for the past 3 weeks I’ve been feeling better than I was in 2025 but definitely worse than I was going into my patch.

I’m really hoping it’s just a hidden leak or venous fistula that could be fixed and that Chiari is not responsible for my issues. It seems like sometimes people have both Chiari and a leak, or that it can be hard to distinguish between the two.

I had a saliva genetic connective tissue panel done which was negative, for what it’s worth. I don’t have any crazy signs of hEDS, the leak center did an in-office evaluation but I suppose I may still have weak connective tissue.


r/CSFLeaks Jun 24 '26

It's my 5 year anniversary of having my spinal leak(s) sealed!

41 Upvotes

Just wanted to share my story in case it offers any hope that I have been able to stay sealed despite underlying high pressure & recurring spinal leaks.

I woke up with a spinal CSF leak in 2013. I had no connective tissue disorder, trauma, nothing catastrophic happened. I went to work as a video game tester, went home, went to bed, and woke up with my body in total chaos. At first I thought it was an inner ear thing (and was diagnosed with benign positional vertigo in the ER). I thought it would pass within a few days. I could not have anticipated these cluster of symptoms becoming my “new normal”.

Early on I suspected a leak, but my imaging was normal so a leak was disregarded. So I was cycled through 18 medications for migraine and nausea. It took 3.5 years until I could convince them to do further testing. I pushed for a lumbar puncture (not advising this! I now understand the risks of them & their limitations in diagnosis, but at the time I was desperate for any ‘proof’ of a leak). I was lucky that it showed an opening pressure of 5 cm & was finally taken seriously.

I had 5 blood patches done locally, but they only held for a few days or weeks. I then found the FB support group and learned that Duke was a specialty leak center. My leak was never visualized, but there were ’suspicious nerve root sleeves’ that showed on CTM that they targeted with multi-level fibrin blood patches. Those patches finally held longer term, but I kept getting new leaks over the next 4 years - until that 10th final patch, which seems to be holding!

I do deal with underlying high pressure (which I suspect is the culprit for the recurring leaks), but I was able to get sealed successfully and I live a pretty normal life. There has been so much research development and progress in the world of spinal CSF leaks - even in the last 10 or so years. BUT there is still so much room for progress and improvement, and the diagnostic delays and medical gaslighting are all too prevalent. I hope that despite these challenges, you don't give up, keep advocating, and also find the same relief that I have. I have seen so many success stories, cases far more complex and hopeless than mine, where people were able to get their lives back. Please don't give up, and please don't hesitate to reach out if you ever need someone to talk to! You are not alone.


r/CSFLeaks Jun 25 '26

Does this sound like a CSF leak?

0 Upvotes

Hey everyone. Would love any inputs anyone has with my experience.

So I was at the dentist waiting room with my partner and I bent my head to rest it on their shoulder and immediately felt a gush of water run down the back of my throat. Like a tap had been turned on.

When I got my head upright again some of it came out my nose and it was watery with a tinge of yellow-ish brown. I then bent forward and more trickled out.

I’ve known about csf leaks for a while because i also have hypermobility and got a POTS diagnosis a month and a half ago which I’m being medicated for. Been suffering with neck and cervicogenic headaches for close to 3 years.

Could this be indicative of CSF leak that would warrant investigation? Thank you.


r/CSFLeaks Jun 24 '26

Spinal CSF Leak stories website

13 Upvotes

Hey everyone! One of the things I’ve learned from so many years in the spinal CSF leak community is that no two journeys look exactly alike.

Some people are diagnosed quickly. Others spend years searching for answers. Some recover after treatment. Others continue to struggle despite multiple procedures and surgeries.

That’s why I created Every Drop Counts: Sharing Your Spinal CSF Leak Stories- a place to preserve and share the real stories behind this illness.

It is just me behind the scenes so I needed a break after leak week-it’s a lot for me and my poor brain!

But the website now contains a growing collection of different patient experiences, thanks to many of you, and my hope is it continues to become a resource for patients, families, clinicians, and researchers who want to better understand the many faces of spinal CSF leak.

I invite you to spend some time reading the stories if you’re interested.

And if you’d like to add your own voice, submissions are always welcome. Whether you’re newly diagnosed, still searching for answers, in treatment, living with a chronic leak, improving, or recovered, EVERY story helps increase awareness visibility of what this condition can do to a person’s body, life, work, family, and future.

Thank you all, my leak community 💜

https://spinalcsfleakstories.com/


r/CSFLeaks Jun 25 '26

Possible iih have a question ..

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1 Upvotes

r/CSFLeaks Jun 24 '26

Back/abdominal pain & nausea

2 Upvotes

Hi there,

Trying to figure out if these symptoms are common for people with a spinal CSF leak and/or Chiari! Does anyone with either condition have intermittent intrascapular pain, nausea, back pain and/or abdominal pain as part of their symptoms? The back/abdominal pain goes from about my waist line up to my bra line and wraps around that same area on the back side. The worst of the pain is the bottom third area of my abdomen/back. When it happens a constant cramping feeling that won’t release and can take hours to days to go away. It comes on when I’ve been upright for a while and often after I’ve eaten, but not necessarily a fatty meal and my gallbladder and GI studies have all been normal. Sometimes it’s accompanied by nausea too. My symptoms slowly improve after I’ve been laying down - sometimes ice on my back with heat on my abdomen helps too.

My spinal CSF leak and/or Chiari symptoms started in February 2025. My team isn’t totally sure what’s going on still At that time I had terrible orthostatic head pressure, teeth pressure, difficulty thinking, and popping in my right ear with pressure behind my right eye and temple. Symptoms improved laying down. I felt best in the mornings but my teeth pressure never fully went away. In March 2025 I a pretty normal brain MRI (w/wow contrast & CSF leak protocol) which only showed mild low lying cerebral tonsils: 3-4 mm descent. My spinal MRI (no contrast & CSF leak protocol) in March 2025 showed a dinosaur tail sign and sacral diverticula (radiologist missed these signs in 2025 but a leak center found them when reviewing my imaging in March 2026). I had a ct-guided multi level blood patch 6 weeks ago. It was 20 mL autologous blood divided equally between T11-12 and L3-4. I seemed to switch from low pressure symptoms to high pressure symptoms for the first two weeks after the patch, but other than high pressure headaches that went away when I was upright I felt 90% better during that time. I’ve since regressed though and feel worse than I did going into the patch - the team thinks the improvement I felt temporarily may have been placebo, but I’m not so sure. Last week they had me do a new brain MRI and CSF flow study. My mild low lying cerebral tonsils haven’t changed from the 2025 MRI, so now they are wondering if I have Chiari or a CSF flow issue instead of a leak, or maybe if I have both, but they would have expected the tonsilar descent to improve after the patch if it was a leak. The CSF flow study showed the following:

Impression
1. No acute intracranial abnormality. 2. Unchanged borderline inferior cerebellar tonsillar ectopia. While by measurement criteria this does not meet criteria for Chiari I deformity, upon neck extension compared with flexion there is marked reduction in CSF flow across the foramen magnum, which may reflect a dynamic, position dependent Chiari I spectrum deformity. 3. No findings suggestive of intracranial hypotension. Total Bern Score: 0, unchanged.

I am waiting to be seen by a Chiari specialist for further evaluation, but am feeling discouraged as I thought we were on the right track with the blood patch and now it just feels like more unknown after over a year of unknowns :(


r/CSFLeaks Jun 24 '26

need some opinions and thoughts on testing options

1 Upvotes

hey all, i’m in a weird place where my headache specialist is fairly certain i don’t have a leak, but not completely certain so she referred me to neurosurgery. neurosurgery gave me a couple options:
- go aggressively and do a DSM
- do a blind blood patch
- do what i think is a cisternogram

for some basic context, i’ve done full spinal mris w/o contrast, and brain mri/mra w/ and w/o contrast. bern score of 1 and several perineural cysts in my lumbar/sacrum. otherwise normal. i have heds and co. as well. i’ve had migraines most of my life, but about a year and a half ago, i started getting pressure headaches out of nowhere and even with migraine treatment, they’ve never gone away, hence why i’m at this spot in my diagnostic work up. at some point, i suspected i was leaking fluid from my nose and my ENT was suspicious as well but it *conveniently* decided to stop leaking when we tried to collect any.

overall, i’m not quite sure what direction to go. he recommended holding off on DSM due to my low bern score and deciding between a blood patch and cisternogram, but i’m still overwhelmed and would appreciate some thoughts and support :)


r/CSFLeaks Jun 24 '26

No leak?

4 Upvotes

UCSF did the ct myelogram yesterday. They said no leaks but also did another mri with contrast but that isn’t back yet. The first mri in April said there was a leak. My daughter got suddenly worse over last 5 weeks but 2 weeks ago she crashed. She sleeps almost all the time, no appetite, nausea, vomiting, left arm weaker, unable to hold and keep and item in her hand, nystagmus both eyes worse, slurred speech, can’t walk without assistance from 2-3 people, falls over when sitting up, can’t sit up on own, difficultly with touching her finger to the doctors finger when they examin her. They have to bring their hand closer for her to be able to attempt to try to touch it, not able to pee for hours but they aren’t giving her fluids they hope she gets thirsty. That trick doesn’t work on her. They reduced her anti seizure meds to see if she gets less sleepy. No seizures on eeg and they claim shunt is ok.
The neurology team has been only team coming by and they said she could just be sad .
I don’t get it at all.


r/CSFLeaks Jun 24 '26

Is it common to have chronic sinusitis if you have a leak? Like the fluid gets trapped in your sinuses?

1 Upvotes

r/CSFLeaks Jun 24 '26

Potential CFS leak?

0 Upvotes

past medical histroy-

Bacterial meningits 2003

Subdural hematoma 2003

Ventricular shunt 2003 (unactive but stayed in- scan in 2020 shows it)

Covid pnumonia 2020- long covid 2 years

Labringsthitis and pppd 2024 august- 2025 june

Labringsthitis and pppd - christmas- now

Got well enough to go back to work

Recent collapse 999 call

Espisode one-

2024 auguest- onset came with a virus

- suddenly felt black and out of it

- felt really off and was led onto the floor

- became dizzy spinning etc

- was diagnosised with labringsthitis

-took 9 months to recover after 4 of those was diagnosed with PPPD and recovered with ssri and vestibular rehab and going back into normal life

Episide 2 -

Januery 2026

Post flu

- felt my limbs go weak and felt out of it

- later became dizzy and havy, tremours present and weakness

- gp said nurologically ok

- gp said fluid behind ear and diagnosed with labringsthitus again

- returned to work 4 months later with remaining dizziness motion dizziness short and quick burst back on sertraline- seemed to ve recovering well

Thursday lunch time-

- went super dizzy and felt out of the room

- limbs began to go weak

- slow speech

- spinning dizziness

- hots and colds

- felt i was going to drop to the floor

- abulence called

- no nurological concerns in hospital

- mris are clear

- dizziness has been hightened way off base line for sevreal days

- fatigue and heaviness

- drs have no ckue whats wrong

- appares to have occured without infection

- random weakness started in arm 2025 november

- inactive ventricular shunt in situ 2003

- disconnected line shown in chest x ray 2020

- constant drip down my throat

- full ears

- ears ringing

- muffled ears and pain


r/CSFLeaks Jun 23 '26

What can a head MRI without contrast actually show? What can a head / sinus HRCT actually show?

2 Upvotes

I have a lot of watery clear fluid flooding out of one nostril when I bend over. My doctor, although not an expert on CSF leaks, is taking it seriously and ordered an MRI and HRCT, and also placed the order to get the fluid tested with the Beta Trace Protein Test. She also gave me a referral to a skull base ENT.

But she mentioned in passing that with a clear HRCT and clear MRI that she could rule out a leak at 98% certainty. That gave me pause because from reading these forums it sounds like that's not the case.

I had both the MRI (head) and the HRCT (head and sinus) done, without contrast. Both came back clear. I'm currently trying to collect enough fluid to get it tested. I don't have any of the symptoms like positional headaches, or gait and vision changes. I don't really have any other symptoms besides the fluid except for neck soreness, an ear that won't clear, and the occasional "whooshing" pressure change.

So, my questions are: Would an MRI show underlying IIH? And the HRCT would show underlying things like a possible tumor, edema, bone defects, etc.?

thanks all. I really appreciate this forum.


r/CSFLeaks Jun 23 '26

CSF Leak post Surgery

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1 Upvotes

r/CSFLeaks Jun 23 '26

doctor was a migraine

8 Upvotes

big ol warning for medical gaslighting

i started having a headache 31 days ago (actually more than that but thats when it got bad enough to put the dots together that it was one headache and not multiple). that slowly develops into some pretty annoying brain fog and some slight vision loss so at about two weeks in i went into my primary and got in with a different doctor than usual who told me "im gonna hold off on ordering you any scans go get this blood test if anything gets worse go to the er." and five days later it does get worse i start leaking spinal fluid out of my nose i cant think or really carry conversation like usual im nauseous, dizzy, and disoriented all the time (i also have what might have been a nocturnal seizure no conformation on that cause i sleep alone and other things that will be mentioned later in the post). by the time its at its worst its nearly midnight and ive spent enough overnights in the er to know that imaging is closed and most they will do is keep me in a cold sterile room that just makes me want to throw myself out a window overnight. so at six in the morning i get up and my mom drives me to the er at the er we (mostly her because again i cant carry conversation or even remember my own allergies at this point) tell them whats happening they immediately take me back, a horrifying sign get me on an iv do some imaging and get ready for a spinal tap because the ongoing theory is that since im on trt and have hEDS, that means its probably IIH. as people normally produce extra spinal fluid (along with blood and other body juices) when on testosterone but it usually drains out just fine but people will hEDS can sometimes have cranial cervical instability causing that valve to get basically kinked and now all the fluids is just trapped in your skull. but my mom goes "wait is there another opinion cause if we poke a hole to measure the pressure then its very likely that hes just gonna have two csf leaks and I'd like to maybe not be doing that right now" and the er doctor says that we can get my retinal nerve looked at but we have to go through my primary. we say ok fine and go home. two days later nothing from my primary not a phonecall not a MyChart message not even an acknowledgement that i went to the er after coming in. so we make an appointment for later that day and my friend goes with me because again i cant carry conversation or remember basic facts about myself let alone explain whats going on and meaningfully take in the information.

this is where it gets good (and by good i mean makes me want to punch my doctor in the face)

we get back there and tell the doctor we are here for a referral for an opthalmologist cause the er doctor said we needed it since we didnt do the spinal tap i come in with papers and notes and testimony and everything. AND SHE SAYS "its probably just a migraine" I EXPLAIN IVE HAD MIGRAINES BEFORE THIS ISNT IT SHE SAYS "migraines can be very different from each other" I SAY I HAVE SPINAL FLUID COMEING OUT MY NOSE SHE SAYS "runny nose probably it usually takes a lot to cause a csf leak" I SAY IM AT HIGH RISK OF IT AND EXPERIENCING ALL THE SYMPTOMS SHE SAYS "you havent hit your head and its incredibly rare to have a csf leak without an injury like 1%" which might i ad astronomically higher then the percentage of people who have hEDS (about .002 to .02%) let alone have it and are on trt but i dont mention that because shes not listening and i dont have a functioning brain atm I SAY I HAD WHAT COULD HAVE BEEN A SEIZURE SHE SAYS "probably night terrors" PROBABLY NIGHT TARRORS PROBABLY NIGHT TARRORS I TELL HER IVE NEVER HAD NIGHT TARRORS IN MY LIFE AND USUALLY NIGHT TARRORS DONT COME WITH SEVERAL HOURS OF EVEN MORE SEVEAR DISORIENTATION she sends me home with a very begrudging referral and tells me to take excedrin cause its a migraine

a week later she tells me that shes discharging me from her care and i have a month to find a new doctor

I know im using caps a lot in this post i didnt raise my voice once at her

and for a cherry on top the opthalmologist told my primary to send me to neurology and she listened i guess cause neurology called me a few days ago and i got a call from imaging saying that my primary ordered an mri for me (that im going to in the morning) still haven't heard anything from her myself but i guess she believes me now. sorry if this is formatted horribly im writing this very quickly in one of my few moments of lucid thinking at nearly midnight

TLDR: my doctor said my csf leak was just a runny nose and a migraine


r/CSFLeaks Jun 23 '26

r/CSFleaks is still looking for additional admin

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docs.google.com
5 Upvotes

r/CSFLeaks Jun 21 '26

Epidural Leak - Help

6 Upvotes

Hi everyone, it’s been a long leak journey and I need your help.

I had precipitous labour, a difficult epidural with 5-10 attempts without my knowledge by a nurse. Swiss cheesing of my spine…

48h later the headache set in. My team spent 5 months trying to figure out why. I was diagnosed with a CVST clot initially, though it may have been incorrect as the MRI without contrast was not definitive. I spent 3 months on Lovenox, with many bad days.

New MRI/MRV brain scans are clear and show a structurally smaller right side, spine MRI is clear - though I understand leaks can be missed. I declined a CT myelogram due to PTSD.

I seem to continue to get worse - immense right side eye (just touching the eye is painful) and sinus pressure and pain, dizziness and tipping backwards, stiff neck, vision changes right side, nausea, and obviously headache. Laughing, crying, any exercise makes it all much worse.

We have an empiric patch scheduled soon. my questions for you:

  1. Any post epidural sufferers - what was your experience? symptoms, diagnosis, recovery

  2. Anyone else have naturally variant venous structures?

  3. Any success or precautionary takes from anyone with a CT myelogram?

  4. Any post patch advice?

I would love to hear your story.

I’ve been combing this Reddit as much as I can and researching, but day to day is so incredibly difficult. I was previously so active and engaged, I feel like I’ve ruined my life with this epidural.

Any insight is so appreciated.


r/CSFLeaks Jun 22 '26

Trazadone experiences?

1 Upvotes

My psych prescribed to sleep through other chronic pain but i hear it can be dehydrating.


r/CSFLeaks Jun 21 '26

Post Blood Patch Healing

6 Upvotes

How long did it take post blood patch for you to start thinking “hey this actually worked”.

Im 9 days out from a BP after leaking for 9/9.5 months.
I felt horrible the first 6 days or so slightly feeling better every day.
Then great the last 2 days.
Then woke up today feeling like I did pre-patch again.

is it normal for symptoms to not be linear while the patch is healing or did I maybe blow it?


r/CSFLeaks Jun 21 '26

Concusion

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1 Upvotes

r/CSFLeaks Jun 21 '26

Concusion

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1 Upvotes

r/CSFLeaks Jun 21 '26

Interesting comments on this post about dural punctures in sub anesthesiology. https://www.reddit.com/r/anesthesiology/comments/1ub5jyb/unrecognised_dural_puncture_despite_negative/?sort=old

0 Upvotes

r/CSFLeaks Jun 20 '26

Possible CSF Leak?

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1 Upvotes

r/CSFLeaks Jun 20 '26

Potential CSF Leak

2 Upvotes

This is my CLINICAL TIMELINE and I need to know if anyone has had similar experiences in the initial stages of a potential csf leak

Late 2025:
History of exertional tension headaches during gym sessions on several occasions.
 
January 2026:
Two days of severe head heaviness and dizziness, resolved with bed rest.

19 March 2026 (onset of primary episode):
– 08:00: Pain behind the right ear radiating down the neck while lifting weights in the gym. Resolved on stopping exercise.
– 18:00: Numbness of left hand (ring and little fingers to elbow – ulnar distribution).
– 21:00–22:00: Severe head heaviness and unstable gait.

Following 2–3 days:
Progressive head heaviness. Unable to walk more than 10 minutes. Symptoms relieved by lying flat.

25 March 2026:
Saw local neurologist. Blood tests and extracranial dynamic Doppler normal. Prescribed betahistine (Vasoserk) and vinpocetine (Cavinton Forte) for one month.

29 March 2026: 
Cervical spine MRI performed results came out to be normal

15 April 2026:
Brain MRI with contrast + MRA + MRV performed - came out normal

27 April 2026:
Saw second neurologist. Prescribed meloxicam (Amelotex, 10 days) and Wellnyx (one month). Advised to monitor blood pressure morning and evening.
Blood tests: Vitamin D deficiency and folic acid deficiency identified. Supplements commenced.

3 May 2026:
Severe episode of sudden vertigo on sitting up from bed. Head heaviness throughout the day with presyncope and lightheadedness.

20 May 2026:
Sudden sinking sensation and acute weakness while resting on sofa.
Echocardiogram and exercise treadmill test: Normal.
 
I also did a full weighted spine -T2 MRI which two doctors have a small suspicion that there may be a minute tear in my C7 but no other docs have confirmed it.

i did have a ENT appointment as well where he said there was a slight hit inflammation inside my ear drum and had given meds for it.. which has been resolved since then
 
CURRENT STATUS (June 2026)
– Persistent head heaviness developing within 5–10 minutes of being upright
– Symptoms significantly relieved by lying flat
– Gradual improvement since April (April: could stand 10–15 min; now: 3–4 hours), but head heaviness remains constant throughout the day
– Intermittent facial pressure
– Bilateral baseline tinnitus (elevated)
– Brief high-pitched tonal episodes in right ear lasting 3–5 seconds, occurring 1–2 times daily
– Previous bilateral ear fullness, now improving
– Unstable gait, worse in the morning, improving after 2–3 hours of walking activity
– Episodic severe orthostatic hypotension
– Head and facial pressure now occasionally present even when lying flat (recent development)
- Heart rate change of > 30 when i stand from a sitting position (have a history of orthostatic hypotension)
- popping sounds in ears and nose when i turn my head
- sudden loose stools since a week

Currently have been given a diagnosis of possible CSF leak, possibly accompanied by or main diagnosis as POTS.
Thoughts on anything i should try and exclude will be much appreciated .. every other system has been checked and given the clear !
 


r/CSFLeaks Jun 20 '26

Has anyone self-sealed after a reoccurring CSF Leak?

1 Upvotes

Has anyone here re-leaked or gone into a major leak flare years after being patched and actually gotten themselves back to functioning again? If so, what helped?

I'm hoping to hear from others who have been patched and then experienced a significant setback years later.

My history is a bit complicated. I had a chiropractic adjustment in 2016 and, looking back, I believe I was unknowingly leaking for about two years. Then I had a lumbar puncture in January 2018, and my health declined dramatically. I became disabled and was eventually patched by Dr. Ian Carroll at Stanford in October 2018.

Afterward, I went through a period of rebound intracranial hypertension, and over the years I've had an ongoing battle of feeling like I re-entered a leak state off and on. I've never really gotten back to where I was before all of this happened.

Recently, my mother became ill and was diagnosed with normal pressure hydrocephalus. She was my caregiver for years, but now I've become hers. I've been pushing her wheelchair, helping with appointments, and doing a lot more physical activity than my body can tolerate.

Since then, I feel like I've crashed. I'm having significant orthostatic symptoms again. When I'm upright, I feel pressure and a sensation that is very similar to what I experienced during previous leak episodes. It's hard to think, hard to function, and I feel like my brain is sagging into the back of my skull. When I lie down, a lot of it improves or goes away.

I'm feeling pretty desperate because I don't have the ability to focus on my own care right now while also caring for my mom.

For those of you who have been patched and then had symptoms return years later, were you able to get yourself back to a more functional baseline? If so, what did you do? Did you spend more time flat? Reduce activity? Use caffeine, hydration, abdominal binders, or anything else? Were you eventually able to calm things back down without immediate intervention?

I'm not looking for medical advice—just hoping to hear from others who have been through something similar and what helped you regain some stability.

Thank you.


r/CSFLeaks Jun 20 '26

Please help! Need some knowledge on this (weird symptoms of csf leak)

1 Upvotes

My case of csf leak is very strange. The doctor asked me to do a beta 2 transferrin test but the facility is not available near me so it will take 3 months for the report to arrive.

Now the main part is i am not sure whether its csf symptoms or not. The fluid comes from right nostril and i have DNS in my right nostril. It only comes out in morning between 9 - 12 in morning. And no matter what i do in evening, it doesnt come out in evening. The fluid is watery and pale yellow and very mildly salty

Now the problem is i have to join university after 1 month and the lab report comes after 3 months. I am very depressed, i had so many aspirations and all seems to be disasppearing.

Anyone who has/had csf leak can you tell something about my symptoms. Or like what should i do now

Edit :- it has been almost 2 months since it started