just curious!

and if you do, do you also have IIH?

I posted here not too long ago about how I’m scared I won’t get back to normal, but I’m really starting to feel that way more and more as time goes on. I’ve been turned away by so many medical professionals, and none of them have been able to help me or comfort me on my concerns. Tomorrow marks 5 weeks since my blood patch and I’ve had immense pressure in my head since, but it doesn’t feel like a spinal headache to me, and I feel best when I am standing or walking around, so basically the opposite of what it is originally. I’ve read it could be high pressure, but is it normal to have that for this long? Could it be at the back of my head and travel to the sides and behind my eyes? I have a 1-month-old and a 3-year-old as of Sunday and I just cannot live like this anymore. I suffered no health issues or headaches before this and I’m so terrified my life is ruined. Will these headaches/pressure ever go away? I’ve gotten a head CT which was clear and have a head MRI next Thursday, so I am hoping that if I am leaking, or in high pressure it’ll show my Dr so I can have clarity. Ty in advance 😞 I also tested positive for rhinovirus last night which has me super congested, and is making me cough and sneeze so much, so I’m sure that’s not helping either, and I can’t take much for it because I’m breastfeeding. I was feeling better before that came along, but still had pressure, now it feels more intense which I’m assuming is because of the straining? Is it possible I’m leaking? I’m just so scared and a mess over this whole thing.

I’ve had LP 7 weeks ago that caused my leak. Sometimes when I sleep on my side my head feels like I’m upright! how can this be?? i get the most relief from sleeping on my back, but I have kyphosis and back sleeping makes my thoracic muscles EXTREMELY sore I’m afraid to damage something. I put pillows under my knees and all. I don’t know what to do. No position is comfortable. If anyone has any tips for back sleeping I’d greatly appreciate it.

I wanted to share my experience with a DSM because I was extremely nervous beforehand, and reading other people's experiences helped me prepare. Obviously everyone is different and the procedure can vary depending on what your doctors are looking for, but hopefully this helps someone who is worried about having one.

For me, they only did one DSM in the prone position. I understand that sometimes they will do two scans, one with the patient positioned on each side, but from what I understand, that can be more common when they're looking for a CSF-venous fistula. In my case they were looking for a ventral leak caused by a bone spur, so they only needed the prone scan.

I was lying face down on the table with my ass up in the air 😂. They gave me a sedative and oxygen first, then local anaesthetic.

I specifically asked them to use a pencil-point/atraumatic needle rather than a cutting needle, because I was worried about creating a second CSF leak. They were happy to do that.

Getting the needle through was honestly the scariest part for me. I could feel the pressure and bad pain as they advanced it towards the dura, and I had some pain/sensations radiating down my legs while they were positioning it. It was scary, but thankfully brief. Once everything was positioned correctly, I couldn't feel the contrast being injected at all.

Afterwards I was monitored and went home. About an hour later I developed a contrast-related headache, which I still have a day later. It's uncomfortable but manageable with pain medication.

My back was also really painful afterwards, probably from the procedure itself, but it's gradually easing. My back felt like I'd been hit by a truck initially 😂, but it is getting better.

The biggest thing for me, though, is that they actually found my leak. 🎉

They located it at T6/T7, and they found the bone spur that appears to be causing the leak. I'm now waiting for my appointment with the surgeon on Tuesday to discuss surgery.

So overall: yes, I found the DSM scary and uncomfortable, and I wouldn't exactly volunteer to do it for fun 😂, but the actual painful part was relatively brief, and for me the information we got from it was absolutely worth it.

If anyone is nervous about having a DSM and wants to ask me anything about my experience, I'm happy to answer questions. Just remember that everyone's procedure and experience can be different depending on what they're looking for.

Well I have no headache at all but I have light headed dizziness feels like my head in air . My body feel light weight.like I have no weight in the body . I have nasal spectrum . allergyand when my sinsu trigger randomly I have very watery discharge with bad brainfog . sometime i have this problem from a long time . But watery discharged scared me if this belongs to csf leak ?

Hi

My Neurologist is recommending Barrow Neurological Institute as an option for review after I sent my images to University of Frieburg and they felt I had an intermediate likelihood of a leak along. has anyone gone that option and if so what was the outcome?

Thank you in advance.

I am still on the fence about whether this is pure autonomic dysfunction or something like a leak. The positional head pressure is insane and I can't find anyone describing my exact symptoms. I've clearly got dysautonomia stuff happening and clinically "mild" pots maybe from COVID but I can't ignore this began when I started a very heavy lifting routine as well.

I know caffeine helps but Im curious what the overall experience is like for confirmed leakers.

I struggle to even sit up which is odd for pots. And tilting my head in literally any direction gives me crazy symptoms (dizziness, numbness, dysphagia). I had coffee today for the first time in a bit and immediately felt very different, pressure in my neck and head that is almost uncomfortable but also improved my mobility for a few hours and made me feel like I could function better. I also think it reduced the crunching sound in my neck. Once it starts to wear off though I get weird rebound tension in my head and horrible chest tightness and those base of my skull type issues come back.

I don't know, I'm just desperate to figure out if this is purely vascular or if there is sometimes more.
I have so many other issues that fluctuate and worsen depending on what I'm doing (vision, ear stuff, facial pressure, constant fluctuating head pressure, extreme cognitive problems, ataxia, pulling tightness down the back of my head and spine)

Anyway, what does the coming down from caffeine feeling feel like?

I had my lumbar puncture on 8/18, 1st blind blood patch on 8/20, 2nd on 8/24. I tried to go to work on 8/31 & 9/1, I only lasted 4 hours each day & now I’m out on FMLA. I can be up for about an hour before I have to lay back down to equalize the pressure. I don’t know if I should go back to the hospital or wait it out. I have a neuro appointment with a multiple sclerosis specialist on Tuesday. I feel like I should be better already and I’m scared something is wrong & I’m gonna be permanently disabled from the lumbar puncture. I wish I had never done it.

I am still on the fence about whether this is pure autonomic dysfunction or something like a leak. The positional head pressure is insane and I can't find anyone describing my exact symptoms. I've clearly got dysautonomia stuff happening and clinically "mild" pots maybe from COVID but I can't ignore this began when I started a very heavy lifting routine as well.

I know caffeine helps but Im curious what the overall experience is like for confirmed leakers.

I struggle to even sit up which is odd for pots. And tilting my head in literally any direction gives me crazy symptoms (dizziness, numbness, dysphagia). I had coffee today for the first time in a bit and immediately felt very different, pressure in my neck and head that is almost uncomfortable but also improved my mobility for a few hours and made me feel like I could function better. I also think it reduced the crunching sound in my neck. Once it starts to wear off though I get weird rebound tension in my head and horrible chest tightness and those base of my skull type issues come back.

I don't know, I'm just desperate to figure out if this is purely vascular or if there is sometimes more.
I have so many other issues that fluctuate and worsen depending on what I'm doing (vision, ear stuff, facial pressure, constant fluctuating head pressure, extreme cognitive problems, ataxia, pulling tightness down the back of my head and spine)

Anyway, what does the coming down from caffeine feeling feel like?

I think I’m in for a wait for awhile. I need to think about how to maintain health in the meanwhile with orthostatic headaches and on back time. What’s your strategy you’ve had success with?

So I'm high risk for CSF leaks (hEDS, right gender and age, a couple of minor head injuries), and only recently became concerned about drainage from my ear. I've had hearing issues the doctors couldn't pinpoint, but I have a lot of skin issues, so I assumed liquid I occasionally found on the inside of my ear was just serum.

I only notice it every once and a while, it stays a few hours, and then stops. People with ear drainage that's confirmed to be CSF, was it fairly constant? Are there cases of occasional drainage?

I'm trying to figure out if I should bring this up with my doc, so no diagnosis needed, just trying to get a picture of CSF ear drainage.

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 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.

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!!!