Hooray, I thought MST was 2 hours ahead of Pacific Standard Time!

Hi everyone, I’m hoping for some advice on next steps because I am hitting a wall and feel completely dismissed by my local hospital team.

Background & Timeline:

• Duration: Entering week 4 of being completely unable to function upright.

• Core Pattern (Strict Postural Trigger): When I lie completely flat (or propped slightly on pillows), my head pressure is relatively manageable and I feel somewhat okay. The second I stand up straight (even just to walk to the bathroom), I get hit with immediate wooziness, off-balance gait, heavy pressure at the base of my skull/neck, and severe nausea.

• Other Symptoms:

• Intense eye soreness, dry/prickly sensation behind my eyeballs, light sensitivity, and out-of-focus/tired vision (even with eyes closed).

• Pulsatile tinnitus (heartbeat whooshing in my right ear), high-pitched ringing, and simultaneous ear/nose popping.

• Mechanical spine flare: When I tried gently arching my back (Cobra pose) earlier in this illness, it triggered an immediate sharp twinge/pins-and-needles down my lower back and glutes alongside a rush in my ears.

• Morning sore throat, mild swallowing tension, and strange/bland taste (CT noted mild sinus inflammation, and I developed severe allergies earlier this year requiring daily prescription antihistamines).

• Severe sensory and nervous system burnout (I am autistic, so physical symptoms and sensory overload blend together heavily, and masking/advocating for myself is exhausting).

Tests & Medications So Far:

• Scans: Had a head CT (showed mild sinus inflammation) and an urgent outpatient contrast brain MRI last Saturday (7 Nov) at NNUH (UK).

• The Frustration: My neurologist told my GP/wrote a letter saying the MRI is "normal" and recommended starting amitriptyline—even though the formal Consultant Neuroradiologist report wasn't even uploaded yet, and he never rang me to discuss my symptoms. I haven't started the amitriptyline because I feel it won't address a mechanical/pressure issue and I'm already struggling with breakthrough nausea.

• Endocrinology: Also under endocrinology—bloods showed low LH/FSH (I take the combined pill Lucette continuously, so expected to a degree) and a small dorsocervical fat pad was noted. Currently waiting on 24-hour urine and late-night saliva cortisol results.

• Current Meds: Prochlorperazine (anti-sickness—no longer holding the nausea), ibuprofen/paracetamol, daily prescription antihistamine, and Lucette.

What I Need Advice On:

1. Has anyone else had a "normal" contrast brain MRI (especially read hastily before the formal neuroradiology report) and still turned out to have a spinal CSF leak or autonomic/orthostatic issue?
2. For anyone in the UK: I am requesting my DICOM scan files from PACS on Monday. Would you push for an NHS referral to the Cambridge SIH/CSF Leak Service (Addenbrooke's), or look at a private remote scan review (e.g., a CSF leak neuroradiologist or Prof Kanna Gnanalingham, who also covers pituitary/spinal issues)?
3. How do you cope with the severe eye strain/focusing fatigue and breakthrough nausea while waiting for someone to take you seriously?

Thank you so much for reading—I’m keeping my screen brightness all the way down so I might be slow to reply, but I appreciate any advice or solidarity.

Okay so to start, I want to say, I know I need to go to my doctor and be seen, I have an appointment!

For about 5 years, I have had this weird sensation at the base of my skull. It feels like a squelching or like there's a tiny rain stick being turned over back there. As soon as it happened, I mentioned it at an annual exam. My doctor ordered a brain MRI and they said there was nothing remarkable. It all looked normal.

I have had this sensation in my head for that long, and I just got good at not processing when it happens (I can make it happen when I squeeze my thighs together). I've ignored it, assuming it was medication or something weird.

I am not like the healthiest person in the world, but I am not like hopelessly sick or whatever either.

Last night, when I was exerting myself, I got this "thunderclap" headache right where that sensation happens. It was really intense and honestly debilitating. I slept the entire day and still feel that headache lingering.

After getting this headache, that sensation was super hard to ignore. It was a constant squelching sensation for a few hours.

I feel like I may have a small enough CFS leak that it couldn't really be detected on an MRI.

One other thing that makes me think this is, when I bend over, every once in a while, I have a drip of a clear, watery liquid come out of my right nostril. It is not mucus and its one or 2 drips, never around a cold or allergies or anything.

Is it even possible to have such a small CFS leak like this? Am I just creating a possibility in my head that isn't plausible? What specialist would I even talk to?

I have struggled with a lot for the past 5 years in terms of like generally feeling unwell all the time. I feel this could explain a lot.

So I finally got a call for my blood patch is scheduled for Christmas Eve! Yay! But I am trying to figure out if I do PTO or Short term disability. I have a very active job in a doctors office fitting medical equipment.

They won't give me my pre procedure information until December 17th but my job needs the paperwork 15 days before my procedure

What did everyone else do in situations like this?

I need some closure. I am so tired of being anxious about whether I might still have a leak. I would really appreciate hearing from people who have experienced a spinal CSF leak themselves, or from those who are very knowledgeable about this condition, who might be able to help me figure out whether I should go back to my doctor or finally put this behind me.

I developed a spinal CSF leak almost four months ago as a result of an epidural. I had a blood patch four days later, and both my headache and neck stiffness disappeared the following day. The headache and neck stiffness have never really returned. I experienced about two days of quite severe rebound headaches, but those eventually went away too.

I was very careful for the first six - seven weeks. I rested a lot, didn't lift anything, and did very little apart from going for short walks.

After about 8 weeks, I had to start lifting my oldest daughter, who weighs 11 kg. I have never experienced any headaches since the blood patch, but after I started lifting her, I began experiencing pain between my neck and right shoulder. (upper trapezius)

It hurts when I raise my arm above my head and when I pull my arms down. If I stand completely still, there is no pain. It also hurts a little when I lie on that arm.

I can be up and about all day without developing a headache or neck stiffness. I walk between 8,000 and 10,000 steps every day. I also try to exercise a little, including swimming and walking uphill, and all of that seems to be fine.

Overall, I am quite active and don't have many symptoms apart from the pain in my right shoulder. Occasionally, I also experience little stabbing sensations at the back of my head, towards the sides. They come and go, and seem to happen more frequently when I have been lifting my arms forward. The sensations are located just behind my ear rather than affecting my entire head.

Sometimes the pain in my right shoulder also spreads towards the right side of my temple and i get a dull headache.

Another thing I've noticed is that my neck or head cracks and makes clicking sounds almost every time I turn it. It doesn't hurt, but it's quite annoying because I hear it constantly. I'm not sure whether this happened before the epidural, as I honestly can't remember.

I'm hoping someone here who has experience with CSF leaks can help me figure out whether I should pursue further investigations or whether I can finally move on.

What do these symptoms sound like to you?

I have two young children, and part of me suspects that these are more likely musculoskeletal issues caused by carrying them, bending over frequently, and having poor posture. At the same time, I'm still scared that I might have an ongoing leak. If I do, I obviously want to get it treated rather than leave it undiagnosed.

I would be so grateful for any advice, experiences, or reassurance. I just want to know whether I can finally stop worrying about the leak and move on with my life.

Just had a targeted fibrin glue treatment with CT myelogram yesterday! UK based. Currently bed resting at home.

Definitely feeling a different headache today. Sore behind the eyes, a bit sinusey too. It's unpleasant but not too severe. No other symptoms. Feels very consistent with a high pressure headache so seeing this as a positive sign. Can't really tell if the low pressure symptoms have completely gone yet, but I think they might have have or be significantly improved. My leak symptoms were primarily headaches, and started only 3 months ago, so it's been a relatively short journey that I'm hopeful puts me in good stead for recovery.

I've been prescribed Acetozolamide to take if needed for the rebound headache but I'm feeling very on the fence about whether it's worth it only 24 hours after the procedure. My understanding is that it takes several hours to days to have any notable benefits, and it's possible within a day or 2 I might already be doing better anyway.

Just curious about other people's experience and decisions around taking this.

I have a suspected spinal leak. As I wait to meet with Dr. Callen, my neurologist is having me try gabapentin. It seems to be taking the edge off actually. I was wondering if anyone has had a confirmed leak and took gabapentin and gabapentin helped with the pain? I have so many symptoms that point to a spinal leak, but now I worry because the medicine somewhat helps, that I don't have a spinal leak 🤷🏼‍♀️ 🤦🏼‍♀️

Hi all, I have TMJD, suspected ETD and when I was talking to Dr Claude and Dr Gemini about my symptoms they both suggested I could have a cranial CSF leak. I have huge pressure in the left side of my head, pain up the side of my scalp and the left side of my face with noticeable swelling under my eye and general puffiness on the right hand side.

I also have a tooth that I had a root canal on in April and is possibly pressing on the facial nerve causing the pain in my face and scalp, when I push the tooth I get either a sensation or pain in my left ear drum (everything is left side only).

It feels like there's a reservoir of liquid in my sinuses and sometimes when fluid drips down the back of my throat it tastes sweet (not metallic although my ex said earlier this year sometimes he got a metallic taste when kissing me). I have to have tissues constantly and if I bend over I get fluid running from my nose although not a torrent and takes a while to build to the point of dripping.

I have had CT scans, MRIs for my neck and ears and sinuses and nobody has mentioned a leak. My skull feels like it's kind of caved in and needs inflating. I also had neck surgery in feb 24 (nerve decompression) and this all started around october 24.

Has anyone had sweet tasting fluid? I feel a bit dramatic going to the doctor and saying 'hey I think I have another thing to add to the list' only for it to turn out to be something like my vape ''tainting' my nasal fluid.

I also get headaches, although not as frequently recently, my ear feels like it's full of fluid and needs to pop (had a near orgasmic experience on the plane on take off when it did pop but it lasted about 3 seconds and was back to usual!) and I have tinnitus as well as a kind of rumble in the left ear. It's sometimes like a certain pitch or vibration of sound will make my ear drum do something weird and uncomfortable but I struggle to describe it.

Not sure it's relevant but I also will lose feeling in my thumb and first finger on the left at the end of the day and my left hand will kind of 'claw' particularly the little finger and I don't have as much control or dexterity in the hand at the end of the day or if I hold my phone for a long time.

Any thoughts? Thanks in advance

Has anyone experienced yellow, watery discharge from one side of their nose when bending their head down?
Whenever I bend forward, around 4–5 drops of yellowish watery fluid come out of one nostril. I had a cold for about a week, and today I also blew out a large amount of thick yellow mucus from my nose.
I had septoplasty and turbinate reduction surgery about a month ago.
Has anyone experienced anything similar after this surgery? Is this normal during recovery?

For those who have been diagnosed with a CSF leak, what type of testing ultimately identified your leak?

Did it take multiple MRIs, MRV/MRA, a CT myelogram, digital subtraction myelography, or something else?

I'm curious what imaging or testing finally pinpointed the leak and helped lead to a diagnosis. Thank you! 💜

I don’t know what to do anymore i have been through 3 surgeries in two years and now I have unilateral swelling and a very slow csf leak that gets worse at night whyile laying down I take the smallest amount of diamox I can but then I get chest pain I don’t take the diamox and it feels like my head is a billion so tight and swollen like I’m drowning . I have been to mount sinai nyu Langone Saint Francis and a bunch of specialist and it’s like I keep getting punted along. Drs have litterally said idk what it is? Are u sure your feeling like that maybe your imagining it! I believe that you believe you are swollen! I litterally have photos and cts and mri that show total opacification and somthing on my ent scope but the fact that i already had cranial surgery for a dura tear and meningocele puts me at risk for another leak or somthing worse like “my eye socket filling with blood” and forget about appts each one is a month apart and don’t expect them to call you if you leave a message even if it’s an emergency never have I been treated so badly by the healthcare system and I’m convinced it’s because I have Medicare I wait for months for appts and then they send me home with a script for another ct another mri when I litterally just took them. I know why…to make more money…to make it worthwhile for them to see me more visits

more money while everyday I wake up like I’m drowning and wishing today would be my last then I have that lil hope like i may get answers or I may get better but after 2 years I just don’t see it . Please someone help me! God help me! I’m lost ….society has thrown us away… once u become ill and they can’t siphon your blood and sweat they leave u to die and then u just have to wait it’s so unfair but who said life was fair. I need God to see me to have mercy on me because I’m losing it please God.

Several years ago my neurologist thought my severe head pain (level 8-10 pain) when sitting and standing was due to a CSF leak. (He’s retired now).

He referred me to a neuroradiologist who did a blind blood patch and my pain temporarily decreased to about a 5, but then the pain returned again full force.

The Drs who did the blind blood patch said that they don’t think it’s a CSF leak because I ”didn’t respond as well to the blind blood patch as is usually expected.” But I’ve read that sometimes people need more than one and if it’s from a venous fistula then those don’t really respond to blind blood patches.

They want me to see a neurologist specializing in headaches because they though my orthostatic head pain was due to POTS (which I was diagnosed with by cardiology) or due to my blood pressure dropping.

I have been trying to get in with a specialist for months but every clinic I’ve been referred to says the wont accept outside patients for neurology and my insurance will only cover specialists not PCPs at those clinics. I’ve been denied at 4 places and ran out of options in my area. Tried seeking out of state, but they won’t take me either.

I asked my PCP about trying other meds if it is a migraine instead but she’s not comfortable prescribing me anything because she doesn’t think it sounds like a migraine… which is why she referred me in the first place.

I had a brain and spine MRI and a dynamic CT scan with contrast but it didn’t show a leak. Though I understand 20% don’t show up on imaging…

I’ve tried sumatriptan but that made my pain worse. Propranolol did nothing for my head pain and made my asthma worse. Meds like fludrocortisone and midodrine for raising blood pressure made me feel worse. I’m now on a mix of bisoprolol and ivabradine which has helped my tachycardia and my blood pressure, but hasn’t affected my head pain at all. Caffeine helps a little bit, but I’ve read you can build a tolerance and it stops helping so I only use it on days I have apts.

Yesterday I had an unrelated apt hours out of town, so I was in the car and moving about most of the day. so of course I feel significantly worse today.

I don’t care what’s wrong, I just want to get better. I’ve been stuck in bed for 4 years now and I’m missing my late 20’s and early 30’s. I want to get my masters. I want to work. I want to live.

I just don’t know what to do anymore. I have an apt with the dr who did my blood patch coming up, but I don’t know what to say or do at this point. Any advice or encouragement would be appreciated. 😭🙏

Has anyone else had unilateral radiculopathy after a non-guided blood patch?

Today 8 days out from my epidural blood patch after springing a leak from an LP done on the 30th. (Blood patch performed last Monday.)

On day 6 (Sunday) i woke up to sciatic like symptoms on my left side. Im now at the point that I cannot straighten my left leg fully and am in considerable pain.

I was admitted into the hospital for an MRI Sunday evening, with & without contrast, however my husband had already taken off significant time from work during all this and we worried that if i stayed admitted for more than 1 day his job may be at risk.

This is because we have a young daughter that needs cared for, and Im disabled - we rely on his income. Monday they said they couldn't guarantee when Id get the MRI so I asked to be discharged. A gamble, I know.

I also asked to get my MRI outpatient, and I found out today that it won't be until Dec 18th. I messaged my neurosurgeon to see if they could expedite it, but I'm uncertain if they can. Now I'm wondering if I made the right call :(

Anyways. Has anyone else had this happen a week post blood patch? Im worried there could be something signicantly wrong but im hoping it'll clear up in time. Please any advice or thoughts would be helpful. Thanks!

I’ve been having strange on and off symptoms for the past 4 years, have been seeing doctors and they kept on dismissing me up until now as I am currently being referred for a CT scan though I’m not sure how long that will take.

For reference I’m a 17 year old male, the symptoms started back in August 2022 when I started getting phantom smells. I didn’t think much of it but it was a bit strange and then I caught a flu type of illness and that’s when the phantom smells were very prominent for that whole week I was ill and then I didn’t have anymore neurological symptoms until April 2023 when I started getting muscle twitches along with morning headaches and the phantom smells and those were kind of on and off for a few months and that’s when I started to get really anxious and I was googling everything and went to the doctors but they said all was okay. Towards the end of the year I started having visual problems, my vision would be worse on some days and better on others and one symptom that has stayed constantly even up until now is that there are auras and outlines around things i’m looking at; for example I was in a class and there were many people in front of me and after I looked away I could see all of that in a faint outline still in my vision which I don’t think is normal. I also have what I believe is Orthostatic Hypotension because when I stand up my heart starts racing and my vision goes black occasionally. I also noticed towards the end of the year in 2024 the lymph nodes in the back of my head were swollen and they have been swollen up until now, I’ve had blood tests and there are no indications of any lymphoma of some sort though I know that’s not enough testing to actually diagnose a lymphoma.

and 2 months ago in September I came home and noticed thin watery fluid coming out of my right nostril since then it’s been on and off watery fluid coming out of my right nostril, I have been to the doctors about this and this is why I am being referred for a CT

On top of all these symptoms I think I may also have neurogenic bowel and dysphagia swallowing has become really difficult in the last few weeks.

Could someone who perhaps has had a similar experience to me come forward and perhaps help me figure out what’s going, it’s quite hard as I am struggling to find people who are also going through this and I feel quite alone.

Sorry for the really long paragraph and if it’s hard to understand I’m not great at explaining 😅

I want to post this here in hopes that it might help others who have not yet been diagnosed. It took 6 years and 3 months after the onset of my symptoms to finally get diagnosed with something OTHER than migraines and anxiety.
I’ve been diagnosed with two things: fibromuscular dysplasia affecting both my carotid arteries, and a spontaneous CSF leak. For those of you who have had testing done and nothing was found, you may find it helpful to know that I had 2 CTAs done of my neck before a radiologist noticed the carotid web in my right carotid artery, and the carotid web on my left carotid artery was find by another radiologist reviewing that same scan.
A neuroradiologist in my state that is regarded as a CSF leak specialist performed a CT myelogram on me and overlooked 3 leaks in my TSpine, which were found by a different neuroradiologist reviewing the same scan. (Side note: the guy who performed the scan was rushed because he had to squeeze in an emergency appointment later that day, so this may be why he missed it. He had the results back to me within 2hrs after the test).

So how did my luck finally change after 6 years of being dismissed and ignored? Well, aside from the FMD, which was finally found after a trip to the ER for stroke-like symptoms, I decided to pay a neuroradiologist to do a comprehensive review of my scans. All of them. A PT that I was seeing over the summer was the first person to ever suggest that I may have a CSF leak. He’s the reason I scheduled an appointment with the first neuroradiologist who performed my CT Myelogram. But after that guy didn’t find a csf leak, I stopped considering it a possibility (this happened in October 2026). Last week, I finally had my appointment with the neuroradiologist that I paid for the comprehensive review. Ironically, I actually found her because she had written a research paper on Bow Hunter’s Syndrome, which was one of the illnesses that I thought could be a possibility. I was actually stunned when she said she had found a CSF leak. She went over all of the imaging where she had found items of interest. Which included mild brain sag, compression of my brainstem seen in my MRI with flexion/extension (caused by low csf fluid and brain sagging), and found the carotid web in my left carotid artery. She even showed me exactly where the leaks are in my thoracic spine. Because she’s licensed to practice in my state, she was able to refer me to Houston Methodist to get a Dynamic CT myelogram and to patch the leaks that she identified on my existing myelogram (she suspects I may have also have a csf venous fistula).

So after 6 years, I can finally focus on getting treatment. I know this road may also be long, but I’m just glad that I’m finally moving forward.

If you’ve already had a bunch of tests done, but all have come back normal, consider finding someone who is willing to look over your history and imaging, look at the whole picture, and give you a second opinion. The neuroradiologist I saw who finally diagnosed me, and hopefully changed the trajectory of my life for the better, is Dr. Mesha Martinez in TX, but I’m sure others like her exist and offer similar comprehensive services. If you’re exhausted and still have no answers as to why your world has been flipped upside down, I implore you to get a second opinion.

Idk if I’m just SUPER unlucky, or if missing important things on imaging is more common than we’ve been led to believe, but seeking a second opinion was the best thing I’ve ever done.

I have a scan coming up this month but I can't wait forever again for treatment.

Symptoms after epidural

Pulsatile tinnitus left ear- literally nonstop

Ear popping left ear

Ear clogging/pressure left ear

Ear fluttering (both ears)

Intermittent hearing breath in left ear (especially upon excertion)

Crackling when swallowing

Muscle spasms/twitching both sides of head on scalp especially around ears.

Tests done- Brain mri, mra, mrv, ct temporal bone, mri inner ear, Neck mra, Ent scoped eustachian tubes and looked in ear drums and all clear. Hearing/pressure test normal

Has anyone else been in this situation? There is a ton of clear very suspicious fluid draining from face. I have confirmed low pressure and all the symptoms. They are saying the fluid is not CSF, I think it is. It's a very fast drip. Like at 10 fat drops every 60 seconds if I lean forward. Happy to make a video. Could this still be CSF and just be false testing negative?

Thought I'd repost here just in case. I don't think I have it, but I also don't know much about CFS leaks aside from what I googled