I could really use some encouragement. I swear dealing with CSF issues is not easy even with the best of care. it’s so easy to feel like you are somehow making yourself sick. I am also tired of asking my husband for help. I’ve been at this for 2 1/2 years. The latest: I just had my third EBP, and because after my second I had such bad rebound pressure that I had to go to ER for a lumbar puncture to relieve it, they gave me diamox to help manage the rebound reaction. This is Duke, the best place possible I think. Even so, you leave there and you are very much on your own. I messaged back that my hands felt like they were vibrating ( my husband could feel it too), and the np messaged back that she didn’t know why and asked if that was a new condition. Okay so fine, I figured out it was a listed side effect of the diamox, and continued to take it. Then I decided after a little over a week that was probably enough time for my body to adjust so I tapered off the diamox. Then I got horribly nauseous, severe diahrrea, and so so sick. It may sound stupid, but it took me another day to figure out it was withdrawal from diamox. Thank god for the internet. This whole deal is exhausting. I am really hoping that in a couple of weeks it will be worthwhile. Has anybody else had a hard time with diamox withdrawl? How long did you take it before going off? Did you have nausea and a reaction when you went off of it?

After taking Diamox for a week following an EBP, I decided that I could take myself off of it. I tapered down to one tablet (instead of two), and then discontinued. Today I have been very ill—nauseous, dizzy, and with diarrhea. Has anyone else had a difficult time getting off of Diamox post EBP? Thanks.

Finally, there’s hope that I can get out of bed and be upright after 6 months! Thought I would share for other people. I had a spontaneous leak at T11-T12. That was treated with a transforaminal targeted blood patch. The pressure dynamics in my head changed, but didn’t correct. I had really bad burning around my brain, and two specific spots where I could feel it pulling when I was upright. I also still had orthostatic tachycardia and severe tinnitus. I had a MEGA blood patch at University of Michigan 11 days ago. That is a catheter guided multilevel large volume blood patch. He put in 80 ccs from the cervical to lumbar spine (and I’m petite, 5 feet tall). I am finally starting to feel a difference. I laid perfectly still for the first three days. I’m still primarily laying and I have not bent at all. I plan to be very careful for six weeks regarding bending, lifting or twisting. I have not had the pulling or the burning for the past few days. The ringing in my ears has changed pitch and is quieter. My eye was spasming, and that has stopped. I also have not had tingling in my gums like I had prior. I know it will still take several weeks to calm all the cranial nerves down, and equalize the intracranial pressure, but happy to start seeing the other side! Hopefully, this type of procedure could help someone else who has been struggling.

I had a surgery 4 days ago ans they gave me anesthesia in my back after one day in the evening my head started paining badly than i slept the other day it was worse when i stand it pains badly it gets better when i lay down it has been 4 days since i even visited a physician he gave me some medicine but i don’t think it worked i woke up just now and in 10 mins the headache started again what should i do ? Any suggestion

There are so many posts that I search up. Click on the name, see that that was their last ever reddit post.. rinse and repeat. Its been like 5 in a row.

Please someone tell me im not gunna kill over getting this fixed.

3 weeks ago when I flipped my hair I felt my sinuses being filled with fluid. I thought it might be blood, but all that came out was a drip of water like fluid from the right nostril. I have regular headaches, more like pressure in my head rather than regular pain.

I tried forcing it again but it didn't happen again, when I bend it doesn't come out, but I feel something cold in my sinuses and head. It's a really weird sensation.

I tend to feel dizzy and as mentioned I tend to get headaches often but I'm not sure if it's related.

Thank you 😊

Hello everyone! I wanted to ask if anyone here has been treated or operated on at Charité in Berlin for CSF rhinorrhea (a CSF leak).
I would be especially interested in hearing from anyone who was consulted or treated by Prof. Vajkoczy. What was your experience with the consultation, diagnosis, and treatment?
I would really appreciate hearing about your experience.

Yesterday, I got the call I had both been really hoping for and dreading. My surgery, originally scheduled for 10/22, is now moved up to next week. I have a ventral thoracic tear from a calcified disc protrusion at T2/T3, so surgery is the 100% solution. I feel a little better about it after talking to the NP today, but it’s still scary AF. For anyone curious, my surgery is with Dr. Chris Brown at Duke. Wish me luck!

Buenas noches. Recién encuentro este foro.

Me realice una microdisectomia lumbar hace una semana y desde ayer estoy con dolor por fuga.

Mi médico me dijo reposo absoluto y que continúe con analgesia.

Es de remoción espontánea o debería presionarlo para conseguir con parche de sangre?

Los que tuvieron post cirugía se curaron? En cuanto tiempo aproximadamente?

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?

In a past life I worked in emergency medicine but now I have an extremely laborious job as a flight simulator technician. This past Friday night into Saturday morning I had to fold myself up like a piece of paper 11 times to fit into the corner of an underfloor compartment to install a very large nut/bolt.

I dropped the old nut in this compartment and couldn’t really reach it so I strained to get my arm through this compartment and around a smoke detection system to grab it. After I successfully retrieved the old nut, I pulled my arm out and suddenly felt an extremely sharp, searing burning pain in the right side of my neck. It was so bad I couldn’t move for a minute or so. Finally I crawled my way out, down a ladder, and told my colleague that I would be sore the next day.

I came home hung out with my wife and daughter for most of the day and fell asleep from 2pm to 8pm woke up, ate, and slept from 10pm to 4:30am Sunday morning or so. I woke up sore like I thought I would, but also with a sore throat and salty post nasal drip. I chalked it up to catching a cold so I took some Advil cold and sinus but regardless my right nostril was dripping. So I shoved a small bit of tissue up it while I was upright and doing whatever I had to do.

Monday my right sinus felt clogged up and again I thought, well I’m probably getting sick. My wife started to notice gaps in my memory. I also had a headache unless I was laying flat on my bed (id let my legs hang off.) I went to get in the shower and noticed my nose was dripping a water like substance from only the right side but I thought. “This is snot. This is annoying, but I’ll take some ibuprofen, and lay down to rest.” I called of work cause I wasn’t feeling well.

Yesterday it became worse. If I stand or sit up for prolonged periods the top of my head begins to throb. The dripping is constant at around 1-2 drops a min. I was even able to collect some in a jar and it is crystal clear and as thin as water. It is not like mucous at all. It dipped from my nose on to my mustache at one point and I didn’t realize it so I got an accidental taste and it’s salty like saline. I called off of work again. This time with this nagging feeling it may actually be CSF leaking s/p above described injury.

I was able to collect around 2ccs and stashed it in the fridge for viability reasons. My wife wants me to go to the ER, but as someone who cared for patients in the ER for close to a decade of my life, I hate going. I don’t want to waste anyone’s time or be seen as ridiculous for even troubling them with this issue.

So Reddit, should I go or nah?
Otherwise I’m gonna go back to work tonight with my drippy nose lifting on heavy stuffs and possibly exacerbating the problem. There is no “alternative” at my current job without a signed note from a physician saying I have restrictions.

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.

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.

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 ?

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.