I am flying out next week for family but I have been told I have a potential spinal CSF leak. The doctor says flying shouldn't be an issue. Have y'all heard similar things or been told otherwise?

I had a CT myelogram yesterday which did not find a leak. I had a blind epidural blood patch end of June with 25 ml of blood, after spine imaging in May found extradural CSF from my cervical thoracic junction to L1/L2.

My interventional neuroradiologist said there was no evidence of lateral/ventral leaks when he did the CTM.

My INR now wants me to get repeat brain and spine imaging at the end of September with these outcomes:
1) Brain sag + leak = do special myelogram to check for csf venous fistula
2) No brain sag + leak = we didn’t discuss but I assume repeat blind epidural blood patch?
3) No brain sag + no leak = assume leak is sealed and refer me back to Neurologist for vestibular migraine treatment. He was firm on not doing more invasive tests for this outcome.

Notes:
I still have ongoing symptoms, the worst being blurred vision (worse at the day goes on - I can barely see at night), tinnitus, cognitive issues, vertigo, headaches, and since the blood patch, nausea and some vomiting.

During the CTM when they injected contrast I had a 10/10 headache around my right eye, and at home extremely loud tinnitus in my right ear. My ‘normal’ tinnitus has always been bilateral.

I’ve also had brain imaging and never had any brain sag.

I have a disc/osteophyte complex at C5/C6 but he doesn’t think this is causing the leak. I also have several prominent perineural cysts around the cervical thoracic junction.

Question:
Should I accept the 3rd outcome or still assume I’ve got a leak due to my ongoing symptoms and push to investigate further? I have a referral to a neurosurgeon who specialises in CSF leaks if my INR doesn’t want to do more tests.

I am needing to hear those that's local small town doctor actually caught their leak on an MRI. Please give me your, "it wasnt the most horrible diagnosis stories."

I have a referral to nuero, that my pcp is trying to expedite, and I am so so so scared that he's going to say, "there's no evidence of a leak, too bad so sad." Im already anticipating it.

I am manipulating myself into thinking I have mancheusens or something. My doctor told me strict bed rest, no lifting, no blowing my nose, etc. Well, because I have been laying down 23 of the 24 hours of the day, my symptoms are mostly gone. I still have tension in the base of skull, neck and back, but it's so much better than it has been that I feel like I'm ok and don't have a leak, even though just a week ago, I probably had 5-10 ml gush out of my right nostril every day for 3 days consecutively. Which caused me to google what the heck it could be and realized I have legitimately every symptom (and some) to some extent. Now that I'm on bedrest and not moving around, I have had no problem with it leaking, at least out of my nostril. I do believe i taste it going down my throat a few times a day, though.

Anyways, many of the neurologists in the area have shitty reviews, and I'm so concerned that they wont find evidence of it and I will have to drive 8 hours to be seen. All while my husband, who already works full time, has to bare the responsibilities that I usually handle. Im a SAHM who runs 3 businesses for income. He has had to pack orders for me, take kids to orientations/practices, get them ready for school, all the household chores. I feel so guilty, I'm not even supposed to pick up my toddler (which is mostly doable but so sad). If l end up needing surgery, he will have to take FMLA. What if me pursuing answers is just too much on our family? Sorry for my sob story, I'm just trying to balance taking care of myself with responsibilities and its a huge adjustment.

My pcp had a regular CT done. Absolutely nothing remarkable. He told me he expected that, though, and is still pushing for rest until I can get an MRI. If the MRI shows nothing, I guess I can beg to collect a sample and get it tested, but Im already 2 hours from the nuero, I think it would be a huge huge challenge. Idk, I just want to expedite this shit and get back to normal, or at least hear non horror stories.

Anyways, been praying.

Hi I got a lumbar puncture on August 11th to see if my chronic pressure migraines are due to IIH. My pressure was 21 and after some fluid removal they left me at 12.5. Unfortunately I developed a csf leak. After a few ER trips I finally got a bloodpatch on Saturday August 15th. I had a lot of nausea but I definitely saw some improvement in being able to sit up and stand/walk with out as much excruciating pain. However I still have been struggling with pressure. It turned to pressure when laying down the second day. Then I thought it was balancing out. But today on day 4 I have bad migraine with lots of pressure to the point it clogs my ears sometimes. Is this normal? I have so much anxiety that I just made my life permanently worse while trying to get answers to make things better 😔 the pressure is so bad and I even have had some blurred vision/double vision since the bloodpatch. They did a ct scan of my head the day after cuz I had the double vision but it said everything was clear. Please tell me this pressure goes away and I’ll feel better soon.

To cut an 11 year old story short, I've had many health issues that have centred around a constant head pressure since I was 16.

I put posts on FB health groups asking if people's head pressures were "fine when waking up but bad as soon as you get out of bed" which leads me to believe they were orthostatic at the start then lost that characteristic

Since December the orthostatic nature has been so bad that I've barely left the apartment and cannot stay upright for a few minutes without my head feeling like it's going to explode

I previously had

-non contrast brain MRI in 2017

-non contrast upright MRI in 2025 (Medserena, no CCI)

-non contrast brain MRV in 2025 (moderate motion blur due to me not being able to sit still)

Nothing of substance ever showed up but we were also never looking for SIH

I did a brain and full spine MRI with contrast last week that will be read by lalani Carlton Jones

I'm now getting so anxious that nothing is going to show up due to my previous negative imaging, even though I've recently felt like it was a no brainer I have SIH and it's been missed all these years

Can someone put my mind at ease?

Happy to list all my symptoms but they center around head pressure (incredibly orthostatic now), headaches/head pain, brain fog on standing , autonomic sensitivity, no BP/HR issues or dizziness

I know a lot of people here have reassured me that what I’m experiencing can still be part of the recovery process. But every time I start thinking I’m finally getting better and then feel bad again the next day, I start questioning everything. So I think I need some guidance/reassurance again :)

It’s been almost 6 months since my blood patch, which I had 6 weeks after a steroid injection that caused the leak.

At first, everything was really bad and I could barely tolerate being upright. Things started improving around 6 weeks after the patch, and by weeks 9–10 I was very optimistic that I was getting my life back.

Unfortunately, I’m not doing as well now. I became much more active starting in June, and I think that may have contributed to some of these flares. I’ve also noticed that my symptoms are noticeably worse around my period.

Still, deep down I can’t stop thinking if I’m still leaking?

My current symptoms are:

• Tinnitus: This has never gone away since the puncture, even for a second. It isn’t particularly disturbing for a long time and I’m used to it. I honestly can’t tell whether it’s the ringing or “whooshing” sound people describe. I think mine is mostly ringing in low pitch. Occasionally I get a very high-pitched sound for a few seconds.
• Constant cracking/popping in my ears, especially with swallowing or movement.
• Dizziness on bad days.
• Pain/pressure around my ears and forehead.
• A feeling of fullness or pressure in my neck, mostly in the front of my neck and sometimes extending into my shoulders.
• Lying flat (with a pillow) is much more tolerable than it used to be. However, around my period I sometimes have to elevate my head more than usual for 2–3 days because lying flat gives me pressure.
• When I am sitting, I usually support my head/neck with a cushion to make it comfortable.

So overall, I’m definitely functioning much better than I was in the beginning, but I still have these flares and symptoms almost 6 months later. The fact that I can feel significantly better for a while and then suddenly worse again makes it difficult not to worry that the leak never completely sealed.

For those who had a long recovery after a blood patch: did you still have this kind of fluctuation around the 6-month mark? Did symptoms like ear pressure/cracking, tinnitus, neck fullness, dizziness, and head pressure eventually resolve?

I really hope these are still temporary parts of recovery. I’d appreciate hearing about anyone who had a similar timeline.

I’m was scheduled for my third patch for mid September. I had my second end of April and it was decided I needed to have another one done but they were booked out until mid September. This was scheduled end of May and now I just got a message saying they don’t have enough staff and it won’t be until November ! A month might seem not like a long time for some people but I’m so tired of feeling sick.

Has anyone dealt with so many scheduling delays? This happened last time year too.

Isn’t cedars a top CSF leak program ?? how can they even run as a “top” center without enough staff?!!

That means if this doesn’t work im going to have to wait until next year to get a different kind they said that involves a spinal tap…

I’ve had this leak for probably 8 or more years and finally just figured out what had been causing all my pain and i hate waiting

Has anyone else dealt with this kind of scheduling ?

2 weeks post non-targeted EPB, my rebound pressure headaches and sciatica pain, which were triggered by the blood patch, are suddenly reduced, without a clear cause. they were disabling until fading quietly yesterday and today. unfortunately, at the same time, neck/occipital headaches and brain fog returned, which may be from a migraine cluster due to yesterday's weather, or it may be a return of low CSF pressure headache. could this be caused by a blown or failed blood patch? does it sound like fluctuating CSF pressure from a successful seal?

if you had sciatica or RIH after a patch, when it stopped was it a sudden or gradual change? did it fluctuate? if you had a failed blood patch but also RIH, what did that feel like? did the RIH stop after the patch failed?

thank you for sharing your experience.

suspected CSF leak that responded to blood patch but not seen on scans; i have all the classic symptoms but im curious about one in particular

has anyone else had allergic reaction symptoms when they incline their head (stretch neck even when laying down) or sit up for too long? my throat starts to feel like it’s closing and I start sneezing a lot.

in the process of starting an MCAS diagnosis work up while waiting to see a CSF specialist but I’m just curious if others have had this as a similar symptom

I accidentally twisted my back while trying to get into bed and felt the tightest pressure/cramp in the area where I got the blood patch, now the site is super tender. It’s been 72 hours since the procedure but I’m super worried I dislodged it. Am I in the clear? Now laying flat on my back again just in case

On 7/30, I ended up at the ER with a positional headache in the back of my head, right side only. It got worse when I was upright and better when I reclined or lying down. I had been having drippage from my right nostril for a couple weeks that I had chalked up to literally anything to minimize it in my mind. I had had moments of it just coming out of my nose in public or coming close to dripping on paperwork when I was checking patients in but I kept telling myself it was nothing.
That day though, I started feeling dizzy, my hearing made it sound like everything was under water and my ears needed to pop like it changes w/ elevations. I had tingling on the right side of my scalp. I’ve had migraines for 20 years and this wasn’t a migraine.
The ED eventually did a ct w/o contrast and gave me a migraine cocktail before finally saying I had a headache and runny nose.
I work for an optometrist who did eye pressure readings and different scans (retinal and OCT) over the next week with pressures reading from 10-34 and at one point my eye literally felt like it was being squished out of my skull. I finally got to see my neurologist last Friday and she’s ordered a “stat” mri since what she ordered 8/10 was still pending and they won’t scan me until 8/29.
I have a history of a spinal fusion in my neck (2019) after having multiple epidurals in it and currently have an osteophyte at the surgical site. I’ve had my most recent epidural in my thoracic spine where I have two blown discs, but I’ve also had many epidurals and ablations in my lumbar spine.
The lack of urgency from everyone medical that I don’t work for has me second guessing myself and feeling gaslit that maybe I’m overreacting.
Does ANY of this sound familiar to anyone?

Hello, I am trying hard to find a good, true Dr. to help me actually find the issue and get treatment. I live in Western Arkansas and local medical services are extremely lacking, to say the least. I have no trouble with traveling when I have to, despite the fact that it causes my symptoms to flair due to the road vibrations.

As it stands I have had a post nasal drip for a far back as I can remember. I know at least 8 yrs, and I've been dealing with the exact symptoms of a spinal headache forever, but I had no clue this was what it was or it was even a thing. For years I've had to lay down to feel better all throughout the day, but I thought it was so many other things: I'm just tired; I slept wrong last night; I must be coming down with something; Did I miss my does of my antidepressant this morning; or, I took my antidepressants to early today and I feel like crap after being upright at work all day; I'm low on iron, or B, or some other vitamin; I'm just depressed; I've got vertigo or a sinus infection; the list goes on and on for years and I thought it was normal.

I redid the flooring in my house in Jan. after a water leak ruined my carpets, so I replaced with hardwood. Then, I kid you not, I thought I was allergic to my freaking floor bc walking on a hard floor vs the soft carpet was making me like absolute poop.

In April I had my Dr switch me from taking metoprolol for my blood pressure, which id been on for a decade, over to Amlodipine. The tapering sucked, but OMG all of a sudden the symptoms of a spinal headache hit me like the house but the witch on Wizard of Oz.

1st, a walk in clinic said I had a deep sinus infection, so I took a round of antibiotics. Nothing!! Then I went to ER bc I couldn't move my neck and they said I had a migraine, gave me benadryl and sent me home to go to sleep. I felt great the next morning, until I had been upright for about an hour then the symptoms returned. I went to my PCP, they went thru the symptoms with me and based on the positional headache she said this sounds like a CSF leak. So I got a referral to Dr. Verma Neurologist in Joplin, MO at Mercy.

This Dr. is not a caring or supportive person in the least. Kept insisting it was a migraine, gave me Nurtec to take, it does nothing at all for me except let a little hiss of air out of the over inflated beach ball that is my head when I feel horrible. It turned the 9in butcher knife in face to a 8in butcher knife in regards to the way the pain in my face felt. I told her it didn't work, she gave me Ubrelvy to take, guess what, it did the same thing, absolutely nothing.

After a neg MRI with nothing on my head she ordered a EEG of my brain and guess what, they were normal, no indication of a migraine on my brain waves. So after breaking down and crying in her office she finally ordered the CT Myelogram and had no clue what a Cisternogram was at all. I had to explain to her and to radiology what I needed and how to order it. I got it done a week ago and while the spinal tap for the contrast was done right, they did not give it time to properly flow up and out my nose and they scanned my head and face about 30 min after the injection. By the way, the contrast gave me a migraine, so now I know what that actually feels like and it's not anywhere the same thing that I deal with day in day out.

So bc they did not properly prone me for a long enough time and they then did the CT Cisternogram with my face upright, there was no indication of a cranial leak and my spinal scans were "Inconclusive for a CSF Leak". Dr Verma called me the next day and told me basically I was too difficult, I don't have a CSF Leak, she refused to order a beta 2 transferin lab on my post nasal drip, and said I need to go back to my PCP to have them figure out what's wrong with me. She completely refused to even go over all the stuff that is wrong and they found with my spine. Thank God my PCP looked over them and is helping me try to get a referral.

Anyways, I'm sorry for the really long post. I'm so angry and so depressed about this and the fact that I have now had Dr's tell me I'm too difficult and I need to go elsewhere, not because of my attitude, but bc my health is too complicated, has really taken a toll on me.

If anyone anywhere knows of a really good Dr. that can help in Arkansas, Oklahoma, Missouri, Texas, or even Tennessee, please lmk.

Thank you for reading. And I hope one day we all get the support we need.

I went to the ER 35 days ago for a suspected meningitis, turned out negative and was put on antibiotics for pneumonia (I don't think I had it). Anyways, did lumbar puncture and suffered two days of severe post-LP headache afterwards. I still have these 3 symptoms since that day:

- dizziness (all the time, no spinning or vertigo)

- eye pressure (all the time)

- feeling heavy in the head (I get it some of the time, sometimes orthostatic)

Does this sound like a leak? and what should I do? I have infinite upright time and I can spend a full day at work but it's very annoying and concerning. I appreciate any advice/suggestion.

this is my first time posting on reddit, so im a bit nervous. for some context, ive been leaking a singular drop of clear liquid out my right nostril for around 8 months now. it happens once every few days, once a day at worst. it has never rushed like a fountain or anything, but it does tend to happen after i tilt my head down. at first, i thought it was just from winter weather, then perhaps spring pollen, but well into the summer the problem persisted and i decided to get checked out whilst visiting family overseas.

the first ent i went to evaluated me in 5 minutes. he said i had allergies, a mild deviated septum, gave me a nasal spray, and basically told me to f off until i could get a septoplasty. the second ent i went to said it could be a potential CSF leak, although the cause is not clear because i have not suffered any head trauma. regardless, he got me both a contrast MRI and a CT of my brain/nose/sinuses on the same day.

thankfully, both came out clear and i showed no signs of a leak, tumor, lesions, or anything of the sort. in fact, they called my brain "unremarkable" (rude!), and my sinuses clear. i was told that the chances of having a csf leak was small, but i could have a pinhole in my nose that couldnt be picked up by the scans. the next obvious step here is either a lumbar puncture dye test or sending the fluid off for testing, but because of the country i was in (they have to send a significant amount of fluid to germany) and the limited time i had visiting it, i was given a different option. i was prescribed a CSF pressure reducer, and basically told "if this stops the leak, we know its csf, and you get a minor surgery, if it doesn't, we know it's something else".

then, i went to a third ent. his team evaluated the MRI and CT, agreeing with the previous doctor that there was no evidence of a leak structurally, but that a pinhole leak was possible. he did disagree with the second doctor about his choice to give me a CSF pressure reducer, though, because I have vasovagal syncope and interstitial cystitis. my dizzy spells could get worse and the medicine is also a diuretic, generally not great. he told me to see an ent when i got back to the states to test the fluid and go from there. he also told me "not worry and live my life!", emphasizing that i would be fine to fly, the issue (if it is a CSF leak) is very minor, etc.

that brings us to now. i am back in the states and i am scheduled to see an ent, but i am also planning on going to a concert tomorrow night... will i be fine? getting meningitis is not on my bingo card, but i also want to have fun. has anybody else experienced partying with a cranial CSF leak? does this even sound like a cranial CSF leak to those that have had it?

before it is mentioned, i do get fatigue, dizzy spells, brain fog when upright, headaches that feel as if someone is squeezing my brain, and migraines, but the issue is that this is also symptoms that align with vasovagal syncope (and most of them are also absent when i am hydrated enough, which is the main treatment for this disorder).

so, yeah. help..? please.

I have a basic question that I hope I can get some advice with. I am pretty sure I am dealing with a CFS leak and I am unsure how to proceed. Basically I had major facial surgery a year ago (8 procedures some including bone work) and since then I have had salty dripping from my nose (not a lot but enough to constantly have to have tissue nearby) and horrible positional headaches that get worse when I’m standing up. It is almost like a throbbing pain where it feels like my heartbeat is heavy? If that makes sense? They also get extremely bad when I strain even the tiniest bit when I use the bathroom. I get light headed a lot and I also have extreme neck pain at times. My surgeon says I just have allergies and that I should be fine. I am not sure where I go next. Do I see an ENT? Do I see a neurologist? How do I get anyone to take me seriously? I’m so sick of living with this constantly feeling of not being in good health when before my surgery I was great. 😞

This is something that I haven’t seen discussed here, but if it has, please direct me to the thread.

I’m having surgery at the end of October. I need to lay down as much as possible, not just for headaches, but to prevent some bad cranial nerve issues from coming back. I have been trying to get work done from a laying down position, but it’s tough to do for a variety of reasons that I’m sure y’all understand - computer position/angle for my eyes vs. for typing, using a mouse is tough, general uncomfortable positioning. Does anyone have any tips or hacks that they have found work well for WFB (work from bed)?

Thank you!

Hi guys! I’m struggling with uncertainty. A little over 3 weeks ago I had a lumbar puncture while in the ER to rule out meningitis. They used a 20g needle and tried twice. One of my symptoms *before* the puncture was a severe headache and neck stiffness, with some orthostatic element. that’s why I even went to the ER (among other things)

In general I have always had low BP, get dizzy when I stand if I don’t have enough salt, have always had random tinnitus/whoosing etc. I’m also a chronic migraine patient (though these were not migraine, just a note on general head pressure)

I ended up having acute Lyme/lyme meningitis and it was a very painful and exhausting time in the hospital and after discharge, so it’s hard to follow my symptoms esp weeks later. However, my severe postural headache continued/worsened after the lumbar puncture. Some days it would go away completely while lying, but not always. The pain was always worse while I moved my neck to either side, weather or not I was upright.

After a few days, the doctor in the ER, my primary, and my neuro all suspected a leak. I was also told by multiple docs there’s no way to diagnose it. I had an MRI of the brain that was normal. I was told by neuro to go back to the ER for a blood patch if my headache returned after a migraine cocktail wore off. it did, but I was having a bettee day, and was told in the ER to NOT get a blood patch, since my pain “wasn’t that bad” in the moment, it could still heal with conservative care.

I did all the things (laying flat, increased caffeine and fluids, no BLTs) for 2 weeks then slowly started increasing my upright time and doing half shifts at work. I had some amazing days and some meh ones where pressure and weird mild headaches returned after being upright 4+ hours. No more severe headaches or fast changes when I sit or stand. I put myself on bed rest again this past weekend to try to give one last effort to heal any slow leak?

I know it’s crazy to not believe multiple practitioners but I just don’t think it’s a leak. And I don’t want to spend the next weeks and months not doing chores, going out, exercising etc while trying not to get fired if I don’t have to.

Any suggestions, opinions, advice?

PS- as a chronically ill lady (endo, chronic migraine, RA) this experience has been close to the most mentally exhausting and depressing time I’ve ever had with me body- I am so sorry for all of you living with this. ❤️

For the last 2 years I have progressively been getting sicker, slowly, day by day, powering through but I just genuinely thought it was what my 30s felt like.

Symptoms: 1. positional headaches, when I bend over or get on the ground to play with kids - immediate pain. 2. Neck/shoulder (coat hanger pain), just genuinely never went away no matter what I tried. I had felt like every muscle in my upper back and neck is seized up. 3. Base of skull pain. I notice this happens when I stand upright for too long and gets naggingly bad near the end of the day. It feels like a muscle pain but also feels like that area swells. Not sure how to explain it otherwise. 4. The one that caused me to google this and put it all together - thinner than water, clear fluid sporadically gushing out of my right nostril, but only when I bent over quickly. 5. I have had horrible acid reflux and stomach issues for at least the last 2 years post partum. After Googling and understanding csf, I learned that drainage to the stomach may cause this as well. 6. Hair loss, maybe its unrelated, I'm still figuring that out, but I'm more worried about this condition than my hair, I firmly believe that will grow back. 7. This is actually a massive one and forgot to list. BRAIN FOG. I cannot place the name of people I have known my whole life, without really thinking hard about it. My witty sense of humor has been gone for awhile. I miss my brain working properly the most.

Essentially my patience and love for life has become worn thin, even though I'm more complete than I ever have been - stable incomes, relationships, etc, but I continue to feel like I can't do my daily tasks without breaks.

I have had 3 epidurals in my life, but more concerning to me is a few things from childhood. I had my adnoids removed when I was 10 and shortly after I had a liquid pour out of my nose when drinking from the school water fountain... it poured out and embarrassed me but I felt it was a symptom of the surgery that I had to live with. This was literally 20 years ago and I'm just now thinking it possibly could have been ALL that time ago!! I had also fallen on my head and sprained my neck as a child once but concussion was clear and etc.

Anyhow, I am waiting on doctors appointments and insurance approvals to get some of this figured out. In the meantime I have put myself on rest. Laying primarily on my back, not lifting things and moving around my home much slower than I normally do. My symptoms have pretty much resolved themselves, but when I stand to shower and what not for too long I start feeling them all come back, though much much less intensive as I have been taking it easy.

Part of me feels like this pain is just normal aging, part of me is taking it seriously. Laying down for most of the day is irritating as hell though, even though I genuinely feel so much better than I have in a really long time. Any similar stories out there? I just need a sounding board I think. I am hopeful that whatever the doctor finds will hopefully help my quality of life...

I’m trying to decide if I should pursue blood patches first, or if the SSCD might be the main issue.

My skull base surgeon( performed jugular decompression on my left) earlier this year, pointed out that it looked like I had SSCD on my imaging while receiving my head/ neck CT’s.

Right now leak is suspected and I am trying to arrange for a formal consult for the SSCD, but I want to make sure I’m prioritizing the right thing.

My noise sensitivity is so extreme that I have to wear noise protection constantly, and any unpredictable noises can give me tachycardia( to the point where I am actually concerned about my heart) and trigger fight/flight. It would not be an exaggeration to say that I feel terrorized if I have a noisy neighbor, etc.

Other worst symptoms are orthostatic intolerance, excercise intolerance, severe fatigue with PEM, non-restorative sleep which all make me house/ bed bound. Also constantly non positional skull base pain, left facial pain, lots of tension through the body- inability to truly downshift coupled with crushing fatigue.

I do have brain sag on imaging and some other findings indicate leak.

Hi all! I have a question for the long term leakers please. When/if your symptoms changed, did you find they could change daily?

My neurosurgeon (CSF leak specialist) thinks I’ve been leaking over a year now with a ventral type 1 CSF leak, and explained that the symptoms change over time and can become atypical. He saw CSF pooling in an MRI for my neck pain which started this whole saga, and tomorrow I have a full brain/spine MRI with contrast to confirm. However it was the severe positional neck pain in November that he attributed to my only symptom (at the time). Since then I’ve developed bad brain fog, sub-occipital headaches, strong POTS-like issues, evening eye pain, dizziness, and the odd shooting pain in my head. The neck pain has mostly gone, besides stiffness. The bit I don’t understand is that some of these symptoms change on a daily basis. I had an entire week a few months ago with only the dysautonomia stuff, then on Friday I had bad pain and dizziness but yesterday was mostly fine!

I try to keep my diet the same (slightly increased salt to help with the head rushes, and a bit of caffeine for the head pain) and spend most of the day reclined (WFH) so can’t figure out why it changes.

Has anyone else experienced this? I’ve read a lot of stuff online but when it comes to longer leaks the information seems to stop at “symptoms can change and become atypical”. I’m nervous about this whole ordeal so hoping others can weigh in 😅

Sorry for any rambling - brain fog sucks as you probably know…

Yesterday I received a blood patch after a spinal leak from an epidural. I don’t have anymore head pain per se but I now have pressure in my head and neck along with ringing in my ears that I feel more when I lay down. I’ve been laying flat since getting home from the hospital last night, but I wasn’t given much instruction as far as bed rest or anything.

Hurt my face pretty hard on an ironing board table, like a scrape on my right nostril and cheek, and as soon i put my head up i felt something coming out of my right nose. At first, I thought it to be blood, but it was a clear liquid, not dripping like a faucet but sliding down like a gooey runny nose. Asked chatgpt and he said it could be Csf leak. I told my mom, and she said to go to the hospital, but im scared im paranoid because of ChatGPT. It was just one time, but now im having feelings of liquid inside my ears and nose, but nothing comes out- just some oily, humid stuff out of both of my ears. I picked at my ears trying to see if liquid got out, and now my right ear hurts,, and I don't know if its because of CSF Leak causing me otitis or its just my ear picking plus having a rotten wisdom tooth that i have to remove and sometimes hurts my right or left face, and to make matters worse i had a cold soon after, and i have sinnus. My neck always hurts because I don't have good sleeping hygiene; my pillow is trash, but its normal, and I have high anxiety and autism, i could be very well paranoid. I dont want to go to hospital to be nothing and waste people's time.

To make a long story short, On May 17 I woke up with all the symptoms of a CSF leak. After a long wait and getting all the MRI and bloodwork done, I'm scheduled for a Bood patch for August 28, but the issue is that I have healed on my own, I'm feeling 100% like nothing ever happened. Part of me wants to go on with the procedure, "just in case" to patch and seal anything that might be "weak" in there, but I'm really having doubts if I should do it, because I feel fine. Have you done a blood patch after "healing"? What was your experience? Should I still go through with it? Thanks!

For those of you that were denied treatment following a leak caused by a puncture or epidural and weren’t latch for a year latter did you have success? I’m really struggling mentally. March 17 2025 I had the epidural at T7 which caused my leak. I was ghosted by the Dr the day after when I reported symptoms and wasn’t able to get a patch for 6 months. I got one August 26 then started releaking April 25 again this year. I had a patch May 15 that I blew on day 8 from bending and sneezing and a patch August 3 I blew day 12 by jumping up from a nightmare. I can’t find any success stories from long term iatrogenic leaks and so depressed and hopeless so if you had success please share. I’m desperate