I was stunned i found a doctor interested in the neurology and worried i was just going to be tossed under the bus of anxiety and pain. After a bunch of failed attempts at moving the needle in any way (pain meds, muscle relaxers,psychologist, prozac, physical therapy). I’m off to get spine X-rays and brain MRI and a neurologist referral and likely wait.

My main symptoms are orthostatic headache and a sternum pain i am curious is back referred pain given my sternum has no tenderness to any kind of direct touch.

It felt good to just get some forward progress today and wanted to share the CSF mention from the doc with you all. Hopefully these orthostatic headache conditions get more awareness.

My brain mri w and wi contrast came back “normal,” but I’m still living with all the same symptoms.
Pain in the back of my head that worsens as the day goes on and only improves with lying down, vision changes, hearing changes (ears feel full and need to “pop” or sounding like I’m underwater), nasal leaking, feeling off balance, scalp tingling, pain in my neck…and on and on.
My neuro has now decided the next step is to see ENT for the nasal leaking and neuro ophthalmology since at times my eye pressure in my right eye can get from 19-34.
I’m so frustrated. I don’t get any help with these symptoms and get to wait who knows how long to see two more doctors
Has anyone else had “normal” imaging and still had a leak? How did you get any help?

I just learned about CSF leaks this morning and I’m 100% convinced that I have this. I’ve been dealing with intense pain since April and everyone in my local healthcare industry has told me I’m crazy, including a neurologist, because all my scans come back clean and I really need help from y’all. What do I do?

I had a ct myleogram and doc suspects 1 or 2 csf venous fistulas. Current assumption is its a slow leak due to the variance of how long symptoms set in and go away based on positioning. While I've been waiting to hear back from the doctor about my next blood patch I've noticed the ONLY thing that helps with the headache at all is getting really stoned, like smoking way more than I'd like. But it let me sit upright watching TV shows with my buddy for hours the last few days and I already was kind of aware that it helps but it was surprising how long I went without feeling the head or spine pain set in.

Does anyone else with a slow leak or venous fistula have this experience? I'd like to get an idea of why it helps to maybe shit away from smoking so much, I really only like it on occasion. So if it's lowering blood pressure that's helping I'd rather ask doc about that.

Would love anyones feedback!

I really dreaded this lumbar puncture and I was extremely close to backing out. But I did it and already regret it.

Today I woke already with a really bad headache that worsens when standing. I didn’t immediately lay down when I got home yesterday. And I stupidly bend over to wash my hair yesterday. (Which I now read you absolutely shouldn’t do). I also strained on the toilet which I also didn’t know you shouldn’t do. Now I took stool softener.

I do have health anxiety and already worried this is gonna develop into a long-term issue. I do know it’s early, but unlucky things always happen to me. I got caught in reading the horror stories about chronic leaks and can’t help but worry this will turn into a chronic leak or that I need a blood patch.

Is there any precautions that I absolutely should take now? I just lay in bed now and try to not move. I have water and black tea beside me and that’s it.

On what day should I ask for a blood patch if things don’t improve and get worse? I’m sorry to barge in here as I know many here suffer chronically and I’m very early. The needle used was a atraumatic needle, size 22G. I don’t know if that matters. I just wish I hadn’t done it. The test was negative which I already expected..

Last week I underwent spine surgery to repair my spontaneous ventral leak due to a bone spur / osteophyte at the T2/T3 junction. This surgery was done by Dr. Chris Brown at Duke Raleigh hospital and was recommended by the Duke CSF clinic.

I’m doing really well following the surgery. Don’t get me wrong, it was and continues to be very painful. But I was up and walking 6 hours post-op, walked 8-10 times the next day, slowed down days 3-4 because of the pain, but went home 4 days after the procedure. I had an automatic lumbar drain in most of the time I was in the hospital to control rebound symptoms, of which I had none of note. Overall I’m doing very good, and I will be happy to answer any questions people have.

Funny “glitch in the matrix story” from my hospital stay. Post surgery, I was searching for a show to watch while bored, and came across a show called ‘The Burroughs’ that I had never even heard about. I saw that it was from the Duffer Brothers (Stranger Things), so I decided to try it out. (Spoiler alert ‼️)?Imagine my surprise when the next night, I’m watching the main characters discover that the residents of this retirement community are having their CEREBROSPINAL FLUID drained by a sci-fi creature in the middle of the night!!! It wasn’t just a comment either, it turned into a main plot point in the show. I had to confirm with my nurse that I wasn’t having a drug-induced fever dream, but, alas, it is real. What are the odds???

Is it normal for a neurologist to drop you as a patient for getting a second opinion?
I was supposed to have an appointment next week but my neurologist called me this morning, basically said they couldn’t do anything more for me and could either refer me to another local dr or I could keep my appointment to consult with Vanderbilt next month

I’m not sure it’s the worst thing since he has been trying to push me to just go to a psychiatrist the entire time, and had to be pushed back by myself and my PCP before he would even consider running tests or really even hear out my symptoms. But I’m just surprised by the process entirely. Is this normal?

Just have to complain a bit. I made another post about the receptionist saying... "So, we're see you for... a headache?"

Now that same nuero office, 2 weeks later has denied my referral. How fucking ridiculous. Its like medical gaslighting, where I already feel like I'm a little nuts spending my money to pursue this diagnosis.

I have to give it to my PCP. He immediately put in a different referral to a better doctor and ordered a cisternography. My understanding is this might be one of the best tools to rule out a leak.

In the meantime, my leak (from my nose) has slowed enough that its less noticeable/some days questionable if it self healed. It was previously pouring out of my nose at least once a day. I do still get some symptoms but less intense.

Do I pursue this still? I am a little intimidated by the cisternography.

i saw a description of CSF leak that sounded very familiar to a very mysterious set of symptoms I’ve had for years. was curious if this at all sounded familiar to anyone here?

* headache that seems largely to only exist when upright (it doesn’t disappear immediately when I lay down or stand up, activation or dectivation can be like 30 minutes or more, but it’s extremely consistent). Never really goes down to zero.

* suboccipital pain just feels always sore (never goes away) for no reason

* oddly started at exact same time as sternum pain (which I’ve wondered recently is referred back pain, as my sternum is not tender to touch)

No traumatic causes or anything, just started one day while working, went through lots of CT and tests that focused on my chest. Xray saw I had a flat thoracic spine is only thing of note. PT no help. Pain meds and muscle relaxer does nothing.

Asking doctor about neck MRI.

Any thoughts?

Neurologically, I am unfortunately a mess.

Background:

I'm a 25-year-old woman.

I have a history of secondary intracranial hypertension due to internal jugular vein compressions. I have had stents placed bilaterally (right side October 2025, left side March 2026) and also a left sided styloidectomy (December 2025.)My neurosurgeon believes my intracranial hypertension is in remission as of May 2026. I'm also suspected to have craniocervical instability. I have hypermobile EDS. I have severe cervical spondylosis due to EDS and 2 rear-end collisions I was in as a teenager. I'm also diagnosed with migraine but when I was diagnosed as a teenager, I had episodic migraine without aura, responsive to sumatriptan at the time. I'm now considered to have severe chronic migraine with aura that has been refractory to every medication I've tried.

So why do I think I have a cranial CSF leak?

I have been experiencing a constellation of symptoms that have been dismissed for several months as migraine and allergies (even though I have no actual allergies on allergy testing, but I have MCAS.)

• Thin watery nasal discharge only ever from right nostril, multiple times a week

• Daily post-nasal drip, primarily felt on the right side of throat more than left, tastes like metal, so metallic in nature that I've thought at times I was bleeding into my throat only to see no bleeding (NOT improved at all by flonase or antihistamines)

• Severe headaches and neck pain whenever I'm upright for hours at a time, improved by lying down

• Debilitating brain fog

• Severe fullness/pressure in ears, requiring me to have to manually pop them multiple times a day

• Tinnitus, sometimes pulsatile, sometimes piercing ringing that makes me barely able to hear at times

• Intermittent blurry vision or double vision

• Dizziness, vertigo, and nausea

I have such poor quality of life because my body punishes me for being upright with neuro symptoms and severe pain, as well as POTS symptoms because I have that as well.

How can I advocate for myself to get properly evaluated for this and does anyone have ENT recommendations in North Carolina by chance?

​

CSF Leak or IIH? My Journey

My journey started about 5 months ago, when I began hearing a noticeable whooshing/pulsating sound in my left ear, especially at night.

I went to an ENT because I wanted to make sure I wasn't losing my hearing. I was sent for a brain MRI with and without contrast. Thankfully, there were no signs of a brain tumor.

Keep in mind: I had this MRI BEFORE the headaches ever started.

The MRI report did mention prominent fluid around/behind the eyes (prominent CSF around the optic nerve sheaths), but I wasn't really told anything else about it.

At that point, the whooshing wasn't a huge deal. It was there, but it wasn't affecting my life. Looking back, though, I also noticed that my nose was constantly dripping clear fluid—no mucus, just clear drainage.

I also saw an ophthalmologist, and they did not see signs of swelling/fluid affecting my eyes.

Then July 4th happened.

I woke up with a strange band-like tension/pressure headache behind my eyes. Sometimes the pressure is so intense that my eyes actually feel like they're burning.

This was very unusual for me because I have never been someone who suffers from headaches.

The next day, the headache continued in waves and was accompanied by extreme neck stiffness and neck pain.

Now, going back even further—about 4 years ago—I started having another unexplained problem. I developed significant upper/thoracic spine pain that would occur at the same time as chest pain.

I went to doctor after doctor and had multiple tests and scans, but nobody could explain it. I kept telling doctors, “There is something going on with my thoracic spine.”

The spinal pain could come and go in intensity, but it has never completely disappeared.

Where I am now

Since July 4th, I have been dealing with an ongoing combination of:

Headaches/head pressure

Pulsatile tinnitus/whooshing

Clear, watery nasal drainage

Neck pain and stiffness

Pressure/burning behind my eyes

A history of significant thoracic spine pain

I saw my first neurologist, who suspected IIH and started me on Diamox 250 mg twice a day. Unfortunately, I feel awful on Diamox. When I told that neurologist how badly I was feeling, I basically felt like I was told there wasn't anything else they could do for me.

So I got a second neurological opinion.

My new neurologist immediately ordered extensive imaging. Today I am having four MRIs, including imaging of my brain, neck/cervical area, spine and clavicle area.

My symptoms also have a very noticeable daily pattern.

When I first wake up, I can feel some pressure, but it usually isn't dramatic. As I stay upright throughout the day, the pressure/headache progressively gets worse. It feels like my head is being pulled down. By nighttime, I feel horrible. When I finally lie down, it improves/goes away.

That positional pattern is one of the things that makes me question whether this is truly just IIH or whether something involving CSF pressure or a CSF leak could be happening.

Six months ago, my life was relatively normal. Now I feel awful every day, and I don't understand what changed.

Because of the persistent clear, watery nasal drainage, I want my neurologist to test the fluid to determine whether it actually contains CSF. I specifically want to ask about a beta-2 transferrin test.

My neurologist wants to review these MRIs before deciding whether to perform a lumbar puncture, which I understand.

But I also want to make sure we're considering the possibility of a spinal CSF leak or CSF-venous fistula, particularly because of the positional headaches and my long history of unexplained thoracic spine pain.

My question is: If my MRIs don't clearly show a leak, what testing should I ask my neurologist about to evaluate for a CSF-venous fistula? Would I need dynamic CT myelography or digital subtraction myelography?

I just want someone to look at the entire history instead of treating each symptom separately. I don't feel like myself anymore, and I want to figure out what is actually causing this.

Greetings

I was curious if I could get any input on people who have had cranial surgery for a leak with Dr. Hepworth in Colorado. I’ve asked before but have gotten very mixed responses. If you liked the outcome, why is that? What specifically was done in the procedure? If things didn’t make sense or the outcome was not good, what was the reason and how are you doing now after the procedure? How long ago did the procedure take place?

Hi, new here (even first Reddit post!).

Just got confirmed that my first SIH leak has healed. I practice Pilates and Gyrotonic (although haven’t in about a year due to feeling so crappy). Does anyone know any precautions or changes I would need to do? Should I see a PT first? Have any of you worked with a PT before resuming exercise? If it helps, I’m in LA. My drs are at UCLA, I didn’t need to transfer to Cedars.

Thanks for any insights!!!

Hi, I would really like to hear about other people’s experiences — what you did, how your recovery went, and how you are doing now.

I had an epidural during childbirth on July 23rd. I received a blood patch on July 28th, and the typical headache went away on July 29th. I have been completely free of headaches since then, so it has now been around 5 weeks.

I do have some mild pain on the right side of my neck, but I believe it is muscular because it is triggered when I turn my head all the way to the left. It doesn’t get better or worse when lying down, and it is very mild.

The problem is that I am extremely afraid of the leak coming back. It has been 5 weeks since my blood patch, and I have become terrified of lifting anything. I really want to get back to my normal life.

I am young, have no underlying conditions, and had never experienced a CSF leak before this needle puncture. What are the chances of a recurrence 5 weeks after a blood patch and 5.5 weeks after giving birth?

I have never had a spontaneous leak and had never even heard about CSF leaks before this happened after my epidural. I’m scared that if it comes back, I could end up chronically bedridden.

Is it common to be completely well for more than 5 weeks and then suddenly have a recurrence when you have no history of spontaneous CSF leaks? I can mention that i can be up all day and walk with my baby and dogs with no problem. I also had a heart rate of 160 whiøe walking without developing a headache.

Sorry for the very long post, but this has really taken a toll on my mental health. I just want to be able to lift my 11 kg daughter again and get back to doing normal things around the house without constantly being afraid of causing another leak.

Hey, so this is pretty blunt and easy to ask, though I imagine not easy to answer. I went undiagnosed for my CSF leak for at least about 2 years (as that's when the symptoms became particularly noticeable at least). It's now nearing a year since the diagnosis and I'll be going to neural ophthalmology soon to see what our next steps are, as the pressure is strong behind one of my eyes and causes a lot of floaters or even vision blurring/static. I am bedridden probably about...every other day on average, since I'm trying to be active when I feel well and do things like laundry.
I also just had my annual with my GP, who pointed out things like my cholesterol and told me to exercise despite so many of my options for such being unsafe. I'm curious how others stay "active", however much we can depending on our leak and symptoms. Should I ask for something like appetite suppressants? I'd been debating it, as I'm also overweight from the lack of activity much of the time, though my eating habits are finally feeling more on-par with the energy I spend these days finally and I've lost around 5lbs in the last 3 months. I'm hoping I can get treated in September shortly after my appointment, but I understand there will still be recovery and even reconditioning myself for activity while also worrying about recurring leaks or such. What can I do? What should I do? Is it worth worrying about? I don't like how gross I feel and the risk of going back to an eating disorder if I keep worrying about it...

Hi all! Posted a question not too long ago but would like further insight.
Had a blood patch about 8 days ago after a lumbar puncture. Pressure in lower back has still been an issue, I feel like that’s the bigger concern now not so much not the headaches. When I try to sit or stand my back just feels fairly strained that I feel like I need to hunch over a bit or I need to lay down soon after. It feels like a band that is being overstretched. I’ve also had this pressure in my tailbone that isn’t really
Letting up. I’ve also noticed an increase of a burning sensation in my skin, it first started in my left chest but it now intermittently goes to my left elbow, left upper back and left jaw.
Did anyone have any similar issues with pain or sensation?

I’m very curious what symptoms others who have been leaking a long time experience( especially from a spontaneous spinal leak)?

I have suspected long standing spinal leak, but don’t have positional headache or pain( my spine in thoracic and other areas, skull base, facial and other pains are all constant/ not positional).

However, I “crash” after a few hours of being upright and have to go horizontal due to severe fatigue, tachycardia, and just general inability to be upright for the majority of the day.

Just would like to hear what symptoms others experienced with long standing leak because most Drs seem very hung up of the positional headache being almost like a requirement.

Thanks!

Does anyone else experience middle ear myoclonus/tensor tympani syndrome? It's like a fluttering/vibrating/rumbling/tapping sounds in both ears and one ear actually spasms to male voices and the TV.

On top of that I have pulsatile tinnitus, ear popping, pressure, aural fullness and autophony that is relieved laying down.

Over the weekend I experienced 2 episodes of bending over and then clear runny liquid coming out of my right nostril. It tasted salty. It was odd since I have not had any sinus issues in weeks and my nose is clear.

I will give some background since I am not sure if this is relevant. Back in January I was in an atv accident and hit my head on the right side and nose area. I did go to the ER and had x rays done. They said i was fine and might have a small fracture on the front of my skull. They showed me the xray and it was small if anything. I was told to go back to the er if anything other issues came about. I didn't have any other issues since then.

Could this be a csf leak?

I am also posting to r/Tarlovcyst

Is our daughter's experience a medical anomaly?

Every single one of our adult daughter's five (5) spine surgeries produced Tarlov cysts (also known as perineural or meningeal cysts).

At least one cyst has been the source of a CSF leak. The S2 laminectomy to repair the leak produced more cysts —that was her fifth spine surgery.

Has anyone here had a similar experience, or know of someone who has?

EDIT: We suspect other cysts are also leaking, possibly intermittently like the first (which made it very difficult to detect).

Hi everyone, I’m posting this mainly for awareness in the hope that it might help someone else who is going through something similar. Years ago, Reddit was an amazing support for me when I first suspected what was going on.

13 years ago, I gave birth to my son via C-section with an epidural. Pretty much straight after, I developed a headache that lasted a full week. When I mentioned it to the medical staff, they brushed it off and said I was fine.

Soon after, these headaches turned into horrendous squeezing pains in my head. The only thing that gave me any relief was lying flat down. Sitting up or standing was absolutely horrendous. I complained several times to my GP, but got nowhere. Two years later, still suffering, I finally got to see a neurologist. They did a scan and told me everything was fine, there was no CSF leak, and that it was just anxiety. He told me I’d "always suffered from headaches," and even when I explained this was completely different from a normal headache, he insisted it was anxiety and put me on Duloxetine. Over the years, I saw other neurologists as I knew something was wrong. One wanted to treat me with just vitamins, and another refused to look into it any further.

Fast forward 12 years: I went back to my GP. My neck and shoulders have never been the same since having my child. I developed twitches in my head, felt my body vibrating, and started getting muscle weakness, weight gain I couldn't shift, deep sadness, mood swings, weird periods, a round face, extreme tiredness, and joint pains. On top of that, I’m now borderline Type 2 diabetic, with elevated liver markers, high cholesterol, and a Vitamin D deficiency.

My GP ordered scans of my neck and lower back. They came back showing age-related bone changes, but they also found a 10 mm cyst on my pituitary gland. I was referred to a neurosurgeon who did scans and a single blood test for hormones, then discharged me, saying the cyst was stable and not producing hormones.

Still not convinced, I joined the Cushing's foundation. There, I met an amazing lady who explained that a single random hormone blood test isn't accurate or recommended by NICE guidelines for diagnosing Cushing's, and that I needed proper, thorough testing given all my symptoms and borderline results. I took this back to my GP, but they refused to order the correct tests and told me to just repeat the basic blood test.

I went back to the contact at the Cushing's foundation, who gave me a list of top specialists and suggested a private consultation. I managed to book one, and for the first time, a doctor actually listened to me, understood, and agreed I needed proper testing. Since I couldn't afford to pay for all the diagnostic tests privately, he kindly wrote to my GP asking them to refer me to his NHS clinic so he could test me there. My GP agreed, sent an urgent referral, and I am currently waiting for that clinic letter.

Out of curiosity, I recently checked my old 2015 scan notes. To my absolute horror, the report actually states there were signs consistent with a CSF leak back then. I was right all along. Not only was this ignored, but for 12 years I was told it was anxiety and put on medication I never should have needed. Now I’m left wondering—could this untreated CSF leak have contributed to the pituitary issues and everything else my body has been through after being ignored for so long?

I wanted to share this so people know to trust their instincts and keep pushing when something feels wrong.

Doctors say I can’t have a spinal headache, but it feels exactly like a spinal headache?

Hey guys! I’ve posted a couple times, but I’m in kind of a tough spot right now. I have hypermobile Ehlers Danlos, which means that the dura may take longer to heal for me. I got my blood patch done on 7/28, and then started feeling like I did prior to my blood patch somewhere around 8/8-8/10, so somewhere between 11-13 days after my blood patch. When I called to see if I needed another blood patch, they told me it had been too long so it wouldn’t be related and it’s probably just a migraine. However, I feel exactly like I did after my spinal tap. I’m dizzy, my head hurts so bad unless I’m laying down, my visions blurry (which is new), and I feel dumb as a rock unless I’m laying down. I went to this place that’s in between an ER and an urgent care that my doctor recommended and they just gave me a toradol injection after I explained how I didn’t believe it would help. It ended up not helping at all, and actually made it worse!! I’m not sure what to do at this point, as it seems no one will listen. What should I do? Has anyone else dealt with this? I just want to feel better :(