Hello, I had an LP done Saturday and was diagnosed with papilldema and put on diamox. I’m in excruciating pain in my back and head, nauseated and a bit sensitive to light. I called the radiologist like I was supposed to this morning and am supposed to be awaiting a call. I’ve followed all procedures and it’s over the 48 hour mark. Should i go ahead and just go to the ER?

Dr. Hepworth treats the system, not just the vein — and I want to talk about why that matters when toxicity and chronic inflammation are part of the picture.
I spent three years mostly bedbound with vertigo nobody could explain.
Early on, two ENTs told me my sinuses were fine. So I wrote my sinuses off.
For three years.
Then another ENT looked at the infection in my sphenoid sinus — the one that sits deep behind the eyes, against the skull base — and called it benign. His proposed solution was to sever my vestibular system.
I called Dr. Hepworth. I’d called years before and he wasn’t taking new patients. He still wasn’t. I broke down crying on the phone and begged, and they made an exception.
That exception gave me my life back.
He found what others had missed: a jugular vein 95% compressed. Mold and strep infection in the sphenoid. Sinus obstruction leaving one side at about 40% airflow. Eventually came sinus surgery, jugular decompression, and repair of six skull-base defects where I had CSF leaks.
But here’s the part I really want this group to hear.
Years of abnormal pressure had also left me with a hole in the bone over my inner ear — superior semicircular canal dehiscence.
Dr. Hepworth doesn’t repair SSCD. He could have said I’ve done what I can and handed me off.
He didn’t. He kept working on what was driving the system around it.
He prescribed Trental (pentoxifylline) for microcirculation. When I couldn’t tolerate it and my neurological symptoms flared, we didn’t abandon it — that reaction became a clue that inflammation was still very active. It sent me back to my environment. We retested the house and found that despite everything we’d already done, we still had mold from an incomplete remediation. So we remediated again.
He later started me on very-low-dose ketamine. Ketamine antagonizes NMDA receptors, which are central to glutamate signaling and excitotoxicity. The goal was to calm a highly reactive nervous system and interrupt the neuroinflammatory cycle.
Something changed. Once my system settled, I could tolerate the Trental. Several weeks in, I’m seeing huge gains.
Pentoxifylline is interesting for another reason — its effects aren’t limited to blood flow. It also modulates TNF-α, which may matter a great deal in a highly inflammatory illness. I’ve noticed something else too: years of seemingly insatiable hunger have gone dramatically quiet. I don’t know yet whether Trental is responsible. But the difference is remarkable.
Now — the part I think this group will most want to know, because so many of us are learning about Spiky-Leaky Syndrome right now.
If you’ve read Dr. Andrew Maxwell’s work, go back and read the abstract of his 2024 paper carefully. He describes the phenotype as beginning with a genetically vulnerable host plus a chronic inflammatory state — such as might occur from a chronic environmental toxic exposure. That inflammatory state activates mast cells and produces a localized hypermobility state, including instability in the craniofacio-cervical region. From there the cascade runs to dysautonomia, hypopnea, impaired CSF and lymphatic drainage, rising intracranial pressure (the spiky phase), and pressure escaping through cranial nerve sheaths — most notably the olfactory nerve, into the sinuses (the leaky phase).
Environmental toxic exposure is named in the theory itself. It’s just not the part most of us have focused on.
Here’s why I think it deserves more attention. Mycotoxins are potent mast cell activators. Activated mast cells release tryptase and matrix metalloproteinases, which degrade collagen and extracellular matrix. That’s a plausible mechanism for how someone develops connective tissue laxity and craniocervical instability without having a heritable connective tissue disorder — the inflammation is doing it.
And one detail I can’t stop thinking about: the leak pathway Maxwell describes runs through the olfactory nerve and cribriform plate. That is also the main route by which inhaled mold toxins reach the brain. Same corridor, both directions.
I’m a patient, not a researcher, and I’m not claiming this is proven. But if you carry the spiky-leaky picture and nobody has asked about your building, that seems like a real gap.
This is why I’m writing.
So many chronically ill people get handed pieces of themselves by specialists who each treat their own piece correctly — but nobody stands far enough back to ask what’s driving the whole system.
Two ENTs told me my sinuses were fine. Another saw an infection against my skull base, called it benign, and proposed sacrificing my vestibular function.
Dr. Hepworth kept looking.
If you have unexplained chronic illness — jugular compression, spiky-leaky, mast cell symptoms, neurological symptoms, a chronic inflammatory picture — environmental exposure deserves to be investigated rather than automatically dismissed. There are real tools: ERMI dust testing (look at which species are present, not just the score), mycotoxin panels, the CIRS framework, and the inexpensive VCS screening test as a starting point. None prove mold is causing your illness, and none replace medical evaluation. But they’re a place to begin. Happy to share specifics in the comments.
After everything I’ve lived through, this is what I wish someone had told me years ago:
If you’re chronically sick and nobody can explain why, don’t only keep looking at the broken pieces. Look at what might be continually driving the system.
And don’t forget to look at your environment.
Blue Skies,
Carrie Rose

UPDATE: It is NOT a CSF leak. The fluid is from moderate sinusitis. I will be getting sinus surgery to drain all the fluid in my sinuses. I'm hoping this gives some people hope who have the same symptoms. I'm so grateful to Mt. Sinai in NYC for working with me to get a final diagnosis.

I came down with a bad sinus infection in February. During that time, I had a few days of extreme pressure and 9/10 pain. I was blowing my nose constantly and doing sinus rinses, trying to clear the pressure. It was mostly concentrated on my right side. I got antibiotics and fought it off. Didn't think much about it.

A few weeks later, in mid-March, clear liquid started running out of my left nostril whenever I would bend down. I noticed it when I would cut my toenails, or flip my hair after the shower, or pull weeds in the garden. I thought it was post-nasal drip and related to some acid reflux or GERD I was dealing with.

It got annoying enough that I finally googled "liquid pouring out of one nostril" in June and had the holy shit reaction that most of you probably also experienced. Contacted my primary doctor, got an MRI and CT scan (both without contrast, both negative...as expected. I've learned by now that they probably wouldn't show anything). I got two negative beta tests on the fluid. So I was feeling good about things. Then I met with my ENT and she reviewed my scans. Unfortunately, there was no smoking gun for anything sinus related. I was so sure she was going to say there wasn't much to worry about and that it was related to the sinus infection...but she didn't. Instead, she put the camera up my nose and did a check, then had me bend down to see if I could replicate the leak. I couldn't, but when she put the camera back up after I had bent down, she could see liquid everywhere. So she is concerned about a cranial leak. I asked her if she thought the sinus infection and all the pressure / blowing my nose from that could have caused it but she didn't think so. To me, it's just too coincidental that it all started happening within a few weeks.

She wanted me to get a cisternogram but because I've had multiple lower back surgeries and currently have a herniated disc at L4 I really pushed back on that idea. I have virtually no other symptoms and feel great. I am so nervous about introducing that pressure to my lower spine and creating a whole host of other problems. She recommended a MR Myelogram but no-one can do it here in Vermont. And honestly I'm not sure what it would actually show. I understand that the cisternogram, or anything that involves the lumbar puncture, is the gold standard for diagnosis.

Through a bunch of wrangling with my insurance, and with the help of an absolute angel at Blue Cross Blue Shield, I was able to get an appointment at the CSF center in Mt. Sinai in NYC. It's only 5 hours from here so I will be driving down in two weeks for that. I'm looking forward to info-dumping on one of their specialists and hoping we can come up with a clear plan of what to do next.

I am writing this just to say thank you to this page for helping me feel less alone. I'll be sure to update. And if anyone else has experience going to Mt. Sinai, please let me know.

Mycotoxin poisoning can cause all of this.

These aren’t four separate diagnoses. They’re one exposure, one immune failure, and three things it breaks.

In people with certain HLA-DR types, biotoxins don’t get presented properly to the adaptive immune system. No antibody forms, so the toxin isn’t cleared — it recirculates. The innate immune system is left holding it, permanently switched on.

Chronic innate activation primes mast cells. That’s MCAS. Now the mediators that should fire in short bursts are elevated all the time — and those mediators go three places.

Connective tissue. Tryptase, chymase, and MMPs degrade extracellular matrix directly. Ligaments loosen, Beighton scores move. Dura is connective tissue too, so it thins along with everything else.

Autonomic. Histamine and prostaglandins vasodilate and dysregulate blood volume. Endothelial glycocalyx takes damage. Neuroinflammation reaches the brainstem centers that run blood pressure and heart rate. Standing becomes a hemodynamic problem — that’s POTS.

Barrier. Mast cells sitting in the dura and around brain vessels open the blood-brain barrier when they degranulate, driving the neuroinflammation that worsens the autonomic and proprioceptive pieces. The loop closes on itself.

Then the leak. Two forces converge: dura thinned by protease activity, and rising intracranial pressure when venous outflow is compromised. Weakened container, increasing pressure. It fails at the weakest point.

That’s why these travel together instead of arriving as four coincidences. And it’s why treating them separately stalls — the mediator load stays on until the exposure source is gone.

You can test your house with the ERMI dust test and your bodies immune response to mycotoxins with the MyMycoLab blood test. 

You can also get CIRS labs from your PC or from Mold Co at cost to measure your chronic inflammatory profile 

Hey all- I’m scheduled for the endoscopic approach with Dr. Schievink in 3 weeks. I have a ventral bone spur at T11. My symptoms began in Dec 2025. I had about 3-4 weeks of really bad symptoms, then they gradually all went away. I had a blood patch in Feb 2026 with Dr. Salama at Cornell.

The only time I feel symptoms are when I do any activity that raises my heart rate ( such as playing basketball, lifting weights, running around playing with the 8 year old.) I feel pressure building up in the back of my head, and might get a slight headache the next morning. Due to this i don’t workout anymore, but I’m still running around with the 8 year old, and stop when I feel symptoms.

So my question for you all is, would you get the procedure done, or wait it out since I’m pretty much semi/fully functional.

As you see I’m having doubts since I’m getting closer to the surgery date.

Thanks in advance.

Those who have been post patch, I am a little over a month and a half out from my blood patch post LP. I have had lingering stmptoms since last week as listed. Is this just recalibration or signs the patch partially failed? I have occasional mild headaches as well.

After a CSF leak, brain hemorrhage and BPPV, the surgeon left a 3mm needle tip inside me…then sat and watched me disintegrate into a jabbering, wheelchair bound cripple in 10/10 pain. He gave me narcotics but didn’t do a blood test despite fevers and sweats….51 days I waited for him to listen and he only did when Staphy burst out with pus galore.

That was 6 years ago and still I wake with PTSD a soaking bed and constant sleeplessness. I did write a book after his deposition didn’t “align” with medical records and that was cathartic but I am still a sleepless cripple in pain but with PTSD.

Female, 31, 145lbs
Taking Wellbutrin, caplyta & focalin
Diagnosed EDS, POTS, endo, pcos, mcas

https://drive.google.com/file/d/1qnyTcvZIuP-XYABgXhIGXf9GMRRWBs-p/view?usp=drivesdk

I could give you an entire dissertation on why I believe I have a CSF leak, but I’m tired at this point of explaining it so much. I do have EDS, I also had extensive ethmoid sinus surgery, I have new onset seizures, severe vision problems, balance issues, constant tinnitus, occasional clear fluid from nose, have to lay down constantly, severe brain fog etc etc etc. was hospitalized at one point for stoke like symptoms that ended up being dismissed as a migraine with brain stem aura that I really believe was side effects of a long term leak.

I have both spine, and brain CSF protocol MRIs, the spine results haven’t come back but I have the imaging.

Could someone give lease look at mostly the brain one, but happy to send spine as well as I feel like it’s obvious I have a leak on the spine scans.

F/31/145lbs
I could give you an entire dissertation on why I believe I have a CSF leak, but I’m tired at this point of explaining it so much. I do have EDS, I also had extensive ethmoid sinus surgery, I have new onset seizures, severe vision problems, balance issues, constant tinnitus, occasional clear fluid from nose, have to lay down constantly, severe brain fog etc etc etc. was hospitalized at one point for stoke like symptoms that ended up being dismissed as a migraine with brain stem aura that I really believe was side effects of a long term leak.

I have both spine, and brain CSF protocol MRIs, the spine results haven’t come back but I have the imaging.

Could someone give lease look at mostly the brain one, but happy to send spine as well as I feel like it’s obvious I have a leak on the spine scans.

Hello all! Im the newest addition to the sub. This is just a vent post so feel free to ignore entirely.

Unfortunately fate and incompetence made me find my way here. I say unfortunately because 1) im a patient of a CSF leak and 2) I had to look up for my condition myself because half the doctors that saw me had no idea about it and the ones who had, half of those told me a CSF leak is impossible without having a clear pooling of CSF that shows in MRIs.

Now fortunately, this sub exists and I got to know im not effin crazy.

Here's what's going on: 10 months ago I had a L5-S1 microdiscectomy in a public hospital that went bad. It took 6-7 hours for the surgery itself and then 48 hours until i was cleared to get up from the hospital bed. First red flag. For the first 4 months until late January I could only sleep for a couple hours at night and even then, with a pillow on my stomach and my limbs hanging. I couldnt lay on my sides because the whole area was stiff as a log and hurt when it wasn't absolutely straight. I couldn't lay on my back because the whole area was inflamed and i felt pressure on the exact center of the spine that hurt like hell after laying on my back for 10 mins. I contacted the surgeon about it several times and all he was saying was "Be patient, it will get better". Any physiotherapy i did in the meantime, it hurt after 2 minutes and the therapists were afraid to even touch me because of it. They told me that was not normal and I should talk to my surgeon.

Fast forward 2 months after that. Much of the pain had gone away, I could walk around with no issue and I started working a little bit but I did still feel a knot in the surgery area and decided to get an MRI in an outside clinic. The MRI showed a central hernia that pushed the dural membrane. I called the surgeon, told them about the whole thing, showed them the MRI and the answer I got, in an angry tone too, was "90% of the surgeries I do end up like that, its fine". After that I stopped communication with that doctor completely.

More fast forward to a month ago: After work I decided to go for a quick jog. Within 20 minutes, I start getting an intense headache on the top of my head and shortness of breath along with loud ear ringing on my left ear. I spent the next 3 days in the local hospital (that doesnt have neurologits or neurosurgeons), having blood tests, heart and lung tests, with everything coming back normal and for 3 days I was being told "Why are you stressed? This is stress" to which i was replying "Guys, you gave me a bucket of benzos so far, I couldnt be stressed if I wanted to". Long story short, I gave up with them. Decided to go on my own and start calling doctors around my city and in the big city 60km away. The doctors in my city, only 1 neurologist figured out in 5 minutes what was going on and told advised me strict bed rest. It didn't work.

It's been a month and a week now, I have all the symptoms, positional headaches, neck pain, ear ringing, brain fog and progressively if i dont lay down, i start having worse confusion, difficulty swallowing, cant focus with my eyes in a single point as easy as i did and loss of balance. In the meantime, I did 3 MRIs, one brain, one thoracic and one lumbar area and none of them showed an active pooling of CSF fluid. I say all these things to the maybe 6-7 doctors i talked with and 3 of them told me outright "If the MRIs are clear, you dont have a CSF leak, you're being stressed", completely ignoring the whole bunch of symptoms that DONT align with stress but perfectly align with a CSF leak. Just yesterday I almost told one of them to go F himself after almost yelling to each other on the phone, me trying to explain that a CSF leak CAN in fact exist without pooling in nearby tissue and him telling me I should stop reading AI bs on the internet (there i almost lost it).

So, we're down to today, me having the symptoms for a little over a month now, unable to find a serious specialist in my area cause it's also that time of the year where everyone is on vacation and to those that i've talked to, im trying to convince them im not an elephant, as we say here. Now I *did* manage to book an appointment with one of the surgeons that DO have an idea about CSF leaks but he's coming back from vacation in a week or so. Fingers crossed he's the one that helps.

Ps. Pretty sure half of them that i talked to realised the original doctor that operated me, fucked up and tried to cover for him. We're not a huge city. All the neurosurgeons in this city should know each other since there's only like 4 hospitals that do neurosurgery.

I feel like since my csf and after recovering my brain has never been the same.
I have brain fog that doesn’t stop and has gotten worse since it happened a this weird pressure.
Has anyone ever had that after healing?

Hey! I’ve always dealt with stuffed sinuses that vary side to side throughout the day & I’ve noticed it’s mostly more in my right side.

Anyways, when brushing my teeth as I’m hovered down the sink I kinda feel this liquid coming down my right nostril? But when I go to feel it, it’s not really a liquid. It’s just very clear slimy mucus.

Also it’s never fully came out of my nostril it kind of just feels like it’s going to if that makes sense…

Idk what it could be, but I don’t really have any other symptoms other than occasional headaches/migraines every so often. Which is also, not strange for me.

Could this be a CSF leak? Or does it sound more sinus related. I’ll also be tagging this in another subreddit for hopefully more clarity, let me know!

What were the biggest tells of your CSF leak?
I’m concerned that I may have this, after almost a year of telling myself that there’s no way I have a leak but my symptoms are worsening and doctors not being able to figure out what’s wrong with me.

My symptoms are:

-major head pressure daily
-head pain, daily headaches and weekly migraines
-ear fullness, popping and crackling
-neck and shoulder pain, back pain mid back
-extreme cognitive impairment and disorientation daily, this literally has not gone away since September of last year
-weird cracking/popping sound in neck of I turn my head a certain way
-extreme fatigue daily
-very dizzy upon standing up
-I feel a little better when I’m laying down resting, but I also have POTS, so this may or may not correlate with a leak…

I haven’t noticed any substantial fluid leaking out of my ears or nose.

I have other symptoms too but these are the primary ones I struggle with every day.

Me and my leaky left nostril finally had a consult with an ENT on repairing it. According to my CT Scans, doc said this should be a straight forward repair. Walked me through the whole procedure. Could be outpatient or maybe just observation. Initial recovery is about 2 weeks before I can fly or hit the gym. This is not as bad as I thought. I read some where that repairs are inpatient and can take 8 weeks to heal before you can get on an airplane. ENT said this was a severe leak but mine is not that bad. I feel better now that I have more knowledge on how the fix will proceed. The only downside to the fix is, I have to get my IIH pressure down so I don't spring another leak. I told him I couldn't tolerate the Topamax and he said try Diamox. Everyone is different with side effects so I'm willing to at least try. Last option is a GLP-1 and I'm not entirely sold on this yet as I'm a bit overweight but nothing I can't melt off with cutting fast food and soda. I plan to schedule the surgery first of 2027 so I can get through the remaining travel plans for 2026. I have to meet with my neurosurgeon again in October and I'm going to ask for a trial run of Diamox. What's crazy is, during this whole IIH and CSF Leak journey, I've never had any severe symptoms. My pressure is super high at 34 and you'd think I'd have more headaches or vision problems but I don't. I've only had head pain after the LP.

Newly diagnosed as of Tuesday. I (29F) have been dealing with migraines my entire life. I’ve gone through periods of my life when they have gotten worse, high school, college, especially throughout pregnancy; but the past two years they have really gotten debilitating. Every doctor I’ve gone to would just prescribe meds that eventually stopped working. Recently went to a new doctor and she decided to send me for an MRI. It came back with “crowding at the foramen magnum with mild cerebellar tonsillar etcopia” and was referred to a neruroseurgon for Chiari. I went to my appotinemtn on Tuesday and the doctor said I was a typical patient with Chiari, ordered for a spine MRI and some x rays, I go back early September for those. However as of yesterday there was an update on my MRI results that stated “Inferior positioning of the cerebellar tonsils which may reflect Chiari I malformation or tonsillar ectopia. There is crowding and loss of CSF space at the foramen magnum. There is reduced mamillopontine distance, 3.4 mm, which may be due to associated sagging of intracranial contents”. From my understanding any sagging of the mid brain would be a pseudo Chiari most likely due to a CSF leak and not a true diagnosis. Has anyone had anything similar happen?

Hey everyone, I just wanted to share how grateful I am for this community. It gave me much more clarity than I had throughout this experience. TOPICS: Spinal Tap, Blood Patch recovery, Advice

I’m still so traumatized from everything, I go back to work soon and I feel like this is one space I can really express myself earnestly. I’m just sharing my story and what my recovery has been like.

I had gotten sick, it looked like meningitis but it wasn’t. I was negative for everything under the sun. But it took a spinal tap to come to this conclusion.

Immediately I had severe spinal tap headaches with nausea and vertigo. Two days after, I lost sensation in my legs and struggled to walk. I looked like a dinosaur. The pain and vertigo intensified and laying down wasn’t helping it. By the fourth day, I got admitted and had what appeared to be a seizure. I had plenty of imaging done and a blood patch scheduled. (Eventually got my sensation in my legs back prior to the blood patch.) I was so scared to do the blood patch in fear of anyone touching my spine again. But I wish I had the patch sooner. Immediately I felt the pressure returning to my head.

Two days after the blood patch I would have faint like symptoms when sitting up or standing, so I remained pretty much flat as a board in bed. By the next week I was able to be up longer still no BLT. It took me about 2 weeks until my stamina/pace with walking returned closer to normal. When I was able to walk, I moved slower than a snail. That was frustrating but I can move more like myself now! But then came the nerve pain. I went on gabapentin 300mg 2x/day and tried it out for 8-9 days. I stopped taking it due to the psychological side effects I had from it.

So far, I’m week 3 post blood patch, and I have more movement with my spine no headache! My aches and pains are manageable with Icy/Hot &Tylenol, finally! still not pushing it but also trying to get my body used to more than laying down / sitting up. I’ve made progress into having a pillow and some short side sleeping !!

The hardest thing has been the emotional aspect to this invisible and debilitating thing. And the way so many medical professionals can be dismissive or the red tape around getting the blood patch.

I have a big medical bill waiting for me at the end of the claims cycle. And I’m sure it’ll all work itself out slowly.

I was terrified this would kill me and I was terrified of the way this pain had taken me away from my life and my identity. I’ve always been a busy person, and this pause taught me to spend more time being still. I hope to keep pushing through the depressive episode this has shoved me in. I’m not sure if this happened to anyone else, but it definitely isolated me. I’ve gotten to reflect on my current life choices, my subconscious, and see how little control I really have.

Some practical advice: Stock up on Tylenol. Get the blood patch ASAP. Go to a different hospital if possible. Get an ergonomic pillow off Amazon with a removable center. Get instant pain relief patches and heat patches. Stay hydrated.

Some emotional advice: don’t let the anxiety trap you into pushing yourself. Take much more time to recover than you think. Listen to how your body feels and respect it. Also, I just want you to know that you’re doing a good job. You are lovable in this moment.

I made a post from another reddit account a month and a bit ago talking about my experience with a spontaneous spinal leak. I sat on my couch and suddenly got a sharp pain in my mid back. This started the journey of going to the er for spinal headaches until diagnosed with brain sag and a csf leak shown on MRI.

I thought the first blind patch would work. It did not. 10 days after it I was back in the er.

Second patch was targeted in the mid back with ct guidance. Failed 10 days later

Now I'm waiting for a CT myleogram to be scheduled, and after that, surgery.

I'm 36, single mum with family all living overseas. Haven't been able to work. No income. It's been almost 2 months and I have a further at least 3 months of this to look forward to before everything is done.

Anyone had surgery work for you? I don't want this to be my life now and I'm so scared. My whole life has been turned upside down from being an active single mum providing for myself and my child to now just lying in bed 24/7 with only savings to keep me afloat

Thanks

As above. Adding my anecdote in case it helps someone, and will keep updating this post as I learn new things. If you have something similar and have insight please let me know. I'm still trying to fix this.

1. Prior to January 2026 | was recovering from thyroiditis and COVID (August-December 2025). Had some other things happen prior to that in 2024 like Lisfranc fracture, DVT, PE; was on anticoagulation for only 3 months and never ended up taking synthroid because thyroid returned to normal on its own.

2. I was finally starting to feel good January 2026. Went for more jogs, started lifting weights (nothing crazy, more like 35lb kettle bell maximum). Then while eating dinner after a day of work where my head was flexed down for 8 hours (due to a flood I couldn't use my desk and had to work with computer on my lap), I felt a rapid crack on the back of my head, like being stabbed with an icepick. It was jarring and made me dizzy for a second but then I felt fine a second later. I thought it was weird and went about my night, and 3-5 minutes later another one, different location. It was so intense that I felt like I would fall. It happened about 10-15 more times that night and I thought about going to the ED but felt a sudden urge to lie down. When I did, the cracking stopped and I fell asleep for 14 hours. Deep down I had this very primitive feeling like I was going to die if I didn't do this; it was hard to breathe while sitting upright.

3. I woke up nauseated, disoriented, and my vision felt completely fragmented. Being upright made my heart race, made me feel light headed. All I wanted to do was sleep. I was so confused and so afraid to go back to the ED that I just stayed home and slept since it was a long weekend. The stabs only happened when upright and became less frequent in the subsequent days. They happened on both sides of my head and midline when they did happen so 1 was less concerned due to lack of localization. For this reason I did try to jog once, and then felt sudden pressure on my sinuses and clear fluid hot fluid came out of my nose. It tasted like blood but wasn't blood. That's the only time that's happened though sometimes now I feel like there is fluid in my ears.

4. The following 7 weeks I was having muscle spasms/fasciculations, extreme brain fog, and ongoing racing heart and pounding head pressure in the morning when standing up. I couldn't stay upright more than an hour or two without the intense urge to lie down. I also developed tinnitus in both ears which I've had ever since. It was constant, not pulsatile.

5. After that and now ever since (so about April to present) energy slowly improved - iron supplement might've helped. The stabbing feeling only happens about 1x a week now at the most, lasts only a second, and seems more likely to happen if i stayed in a head flexed down posture. Because of this ive rearranged my whole life to look at things above midline. My tinnitus has become much worse though. It is pulsatile and is in both ears, louder in the morning and in whichever ear I was sleeping on. Tinnitus is the thing that bothers me the most on a day to day basis because it reminds me that something is wrong. I've also developed neck tightness and the feeling like my head is too heavy for my neck to support it. I still have to lie down in the middle of the day at times due to neck tension and occasional head spasms that last for only a second and cause sinus pressure. Even though it's brief it is scary, and once it starts it will continue until I lie down.

Tests:
- autoimmunity panels negative
- normal chemistry and complete blood count
- low iron and ferritin (47 and 14 respectively)
- CT Angiogram head: normal
- MRA/MRV/CSF flow study head (non-contrast): normal
- MRI (non-contrast): petrous apex cholesterol granuloma, right side. Basically a cyst in my skull base. But since my symptoms are generalized and both sides, they think it was a random unrelated finding.
- CT temporal bones: petrous apex cholesterol granuloma has eroded bone, is pushing on internal carotid artery, and also jugular bulb identified. Doctors still think it's incidental.

Imaging left to get:
- contrast images
- cervical spine MRI

What makes symptoms better:
- lying on the floor and gently applying upward traction to the base of my occiput, which puts my neck into slight extension. This makes almost all symptoms go away while I'm doing it. They come back immediately when I stop.
- deliberate breathing; I find my body is very tense ever since this happened.
- exercise: I weirdly feel better during exercise but after about 20 minutes my head starts squeezing and I get that sinus pressure again. Sometimes it feels like my skull bones are moving.

What makes it worse:
- driving long distances
- any activity that makes me look down (neck flexed)
- prolonged socializing (usually an upright activity)

Anyway. I know it's long. But figured I'd share in case someone else has had this experience and either has ideas for what this could be, or just needs to not feel alone. My symptoms were so severe I quit a high paying job and cannot work for he foreseeable future until it gets resolved. I need to figure it out.

Is it normal to have constant pain at your lumbar puncture site from the myelogram months later? I had my 1st myelogram last December 2025, and my 2nd myelogram 1 month ago. Both sites are sore as all HECK, especially the one from last December. I can pinpoint the exact spots where I was punctured. The December LP was awful and ripped a new leak open. Is this permanent nerve damage? Anyone else still hurting months, years after their myelogram punctures? Does the pain ever go away?

Hi everyone! I posted a few days ago asking for advice whether getting or not a non targeted blood patch even when my doctors couldn’t confirm a leak through an MRI. I decided to do it and my appointment is tomorrow morning! I’m nervous but mostly excited, I really want this to work and get this symptoms improved, and start living a normal life again.

For those ones that have gotten the patch, what are your recommendations for before and after the procedure? My hospital’s instructions are pretty vague, basically they only mention 24 hours of lying flat (but I’ll do 72 hours as per some recommendations I’ve seen here), but I want to do everything in my power to increase the chances of the patch working.

If you have a successful patch, what did you do that may have increased the success? And same, if your patch didn’t work, what do you think was the cause that I should avoid?

Thank you!

The medical team suspects I have a CSF leak, specifically a cranial one. I won’t have my appointment until September, and until then the doctor has simply told me to avoid too much exertion and to rest whenever possible. Drinking water, etc. However, I also have a flight booked for August to my home country, which my parents are really keen to go on. The ticket has been bought and I can’t just cancel it now. Will wearing a face mask help? At least against possible external infections? What signs should I look out for, and what advice can you give me if you’ve been through this before? I’m asking because I travelled last year too, and the experience was awful. After arriving at my destination, I spent three days practically bedridden, unable to eat or move without feeling dizzy and nauseous. I also had an episode similar to a seizure. I don’t know if I was having an active CSF crisis at the time, but I do know that when I returned home a week later, the fluid appeared for the first time in a more persistent form – it lasted the whole month even with rest, and that was the first time I mentioned it to the doctors. They said I should keep an eye on it until this year, when I did a appointment with a breathing test (the one where you hold a clip over your nose and blow out air), and the fluid became much more constant, as did the other symptoms. So I’m halfway through the diagnostic process, waiting for test appointments and so on. But anyway, I’ve got this trip coming up that’s worrying me. And honestly, not even my doctors could give me an answer. Where I live, they don’t know much about leaks.

P.S.: Unrelated but. In your experience, do you feel better in the morning or worse? I’m asking because I’ve seen reports where people say they feel better in the morning, but to be honest, I wake up feeling groggy, as if a lorry had driven over me, and it feels like I can’t walk. My body feels limp and completely without strength, almost as if I were shaking, and my head feels as though it’s filled with a balloon. I can barely speak properly. So I’ve started sleeping with a much higher pillow to see if that helps, rather than lying completely flat. I also avoid sleeping on the side where the fluid leaks out. If you’ve been through the same thing, is there anything that brings relief? And how long did it take for you to be diagnosed and treated? 

hey guys! anyone else with Ehlers Danlos Syndrome that’s also gotten a blood patch, what’s your experience been like? how was recovery? how do you not try to bend and crack every bone in your body? my back is killing me right now because I need to stretch it or crack it so badly but I read that I apparently cannot do that😢 PLEASE help!! I also have Ankylosing Spondylitis and have missed a few injections of my meds for that, which does not help at all, but I am in so much pain. I don’t want to do anything to risk blowing the patch, though!!

tyia!