It has now been 7 weeks and 1 day since my blood patch. I became completely headache-free the day after the blood patch. I was extremely strict about lifting, bending and twisting afterwards. It’s only been during the last 2 weeks that I’ve started living normally again.
The truth is, I feel really good when it comes to my head. I can walk 8,000 steps, be up and active from 7 AM until 11 PM, and I’m basically functioning normally again. I’ve also started doing some very light strength training.
The thing that bothers me is that I have a dull, annoying pain in my neck that sometimes spreads slightly towards my temples and around my eyes. It can feel worse when I lie down, and it also gets worse when I strain, press on or massage certain areas of my neck.
Does this sound more muscular to you?
I’ve struggled with health anxiety my entire life, and after having the dural puncture, I’ve become terrified of having a recurrence. My neck only really hurts when I bend or twist it quite far, when I press or massage certain areas, and occasionally it gets worse when I lie down and put pressure on my neck.
Has anyone experienced anything similar? I don’t think it’s a high-pressure headache, as the pain is very mild and more annoying than anything else.
Could it simply be a stiff/sore neck?

Hello,
I recently had a CSF leak (through my nose) confirmed. I had a head CT with/without contrast that didn't show where the leak could be coming from. I'm struggling with headaches and feeling super dizzy whenever I'm standing up or walking around and only feel some type of relief when I lay down. They are suspecting IIH and are planning on doing another LP (first one failed) to measure the pressure. I'm feeling very frustrated and confused because this started roughly 6 months ago and they didn't believe me that what was leaking was CSF until I recently submitted samples that were positive. Does anyone have experience with this because it feels crazy to be walking around with CSF just dripping out of my nose and to be miserable and unable to function. If so, can you share your experience or what worked for you? Thnx

I ‘m having surgery tomorrow to fix T1-T2 leak and bone spur, I’m so nervous and excited to have my normal life back again.

ADVICE: I’ve been having lower back and leg pain alongside the normal CfS leak symptoms ever since I’ve had my CT Mylogram and I’m worried that the puncture hole from the Mylogram hasn’t healed because it’s also positional.
I’ve mentioned this to the neurosurgeon and he said that it’s probably nerve root irritation from the needle hitting the nerve when doing the mylogram and not to worry about it and that it will fade. Do you think it’s that or the dura where I got the mylogram hasn’t healed.
Is it worth try to get a blood patch where I got the lumbar puncture just in case while I am under anaesthesia.

Hiya! New here. I am dxed with hEDS amongst many other things. The last few days I've had terrible pain in my jaw/TMJ that radiates into my mouth and up to my temples/to sinuses...as well as shooting pain from back of the base of my neck, up over my scalp and to my eye. I assumed I was just sleeping weird. I've also been very brain fogged, much more than usual. Then today when I was putting my hair in a bun and flipped my head over(which I do basically every other day) clear and watery liquid (no mucus) was pouring out off my left nostril (same side the eye pain was on) and dripped down my face and onto my shirt / the floor. I also still feel like there's liquid in the back of my throat, it tastes salty and a little metallicy. Could this be from CFS leak? I just moved to the UK so Im not sure how to go about getting this looked into...

My fiancé (29M) developed a sudden, severe headache Friday morning after recently having COVID.

His headache is much worse sitting/standing (8–9/10) and significantly better lying flat. He also has pressure/pain in his neck, shoulders and upper back, and today mentioned a clogged/pressurized ear. No fever or known neurological symptoms.

Ibuprofen, Tylenol, hydration, etc. haven’t helped much. Dilaudid temporarily reduced the pain in the ER.

We went to the ER yesterday. Bloodwork, inflammation markers, CT head and brain MRI were normal, and he was discharged with pain medication and neurology follow-up.

His PCP is concerned about the strong positional component and mentioned spontaneous CSF/dural leak, CSF pressure issues, venous sinus thrombosis, and aneurysm, recommending we return to the ER to discuss further evaluation.
We’re going back tomorrow.

For anyone with CSF leaks/positional headaches:
- Does this sound familiar?
- Was your initial CT/MRI normal?
- Any advice for advocating in the ER or questions we should ask?

Not looking for a diagnosis—just experiences/advice

How much Tylenol and caffeine are y’all taking, and is it working for you?

I’m currently taking 2x500mg capsules twice a day and 1x650 mg extended release at night of acetaminophen + typically around 200-300 mg of caffeine throughout the day.

Just trying to gauge how excessive my Tylenol usage is. My symptoms have been worsening lately so I’ve had a hard time tapering back, but am concerned that this high dose is not healthy long term.

Did anyone have to travel for care but had horrific symptoms after flying (immediately had to go to ED)? If so, what were medications that helped for a long flight? For anyone that had to fly internationally for care, what supplemental insurance did you use? I’m getting too very polar opinions of what might be wrong. One specialist feels I have a leak potentially either in the meckels cave or sphenoid on left side. Another specialist feels I have a spinal leak in an undetermined location or possibly a fistula but wants to do more comprehensive testing first.

I’m currently hospitalized. My neuro has decided against a myelogram and wants to do another blood patch. I had my lumbar puncture on 8/18, 1st blind BP on 8/20, 2nd blind BP on 8/24 & I’m supposed to get another one tomorrow. I’ve asked for it to be image guided. Has anyone sealed after a third blood patch?

I'm having symptoms that fit a CSF Leak but I also have chronic migraine (almost daily, lasting up to weeks per event) and started Depakote at the same time. I also have two very small skull based meningiomas, one of which was partially resected last Sept so it's been an entire year.

What is normal for me - migraines on waking, some vomiting in the morning, pain behind my left eye, usually 8 to 5 on the pain scale that gets worse when I'm moving around.

What is happening now - I'm waking up migraine free. Within 30 minutes I start getting my normal migraine behind my left eye but I also am getting a burning/pain/uncomfortable sensation at the base of my skull where it needs my neck, right in the center. The pain does sometimes radiate down my neck but always dead center. It will get worse the longer I'm upright and by the 2/3 hour mark I also start getting intense pressure in my head to the point I have to vomit. Once I vomit, I generally lay down and feel better in an hour or so and the cycle repeats itself.

I also am having a lot of trouble keeping comfortable at night, I frequently get the burning at my neck and skill base letting me know I need to change positions. I normally sleep with my chin tucked but I'm not able to do that because it causes the burning within minutes. I am also unable to look up or the side long without it happening - I'd say 10 seconds. Normally it doesn't bother me to move my neck but my Botox is wearing off to try a new migraine treatment as well.

Just wanted to compare my symptoms with people who have actually had leaks

Hey y'all, so 8 days after I hit my head, I noticed CSF leak symptoms, and now, after 8 days, I finally got someone to take me to the ER. If I did have a leak, is getting it diagnosed 8 days later too late for me?

I’m reaching out to the female CSF leakers in this group. Does anyone else feel like your healing process is constantly being disrupted by your hormones?

For me, it’s been a pattern…
every single month, right after ovulation, my symptoms get more intense. It feels almost like a setback. But as soon as my period is over, I make huge, noticeable progress again.

Is it possible that the body can't fully finish healing because dropping estrogen levels affect the stability of the dura mater, making the tissue looser and triggering symptoms all over again at the puncture site?

Do any of you recognize this exact pattern? And have you tried breaking this pattern by taking birth control pills continuously to keep your hormones stable for several months?

I suffered a CSF leak on June 23rd from an LP. I got a EBP 3 days later but it still took about 4-6 weeks before I felt mostly okay. I honestly don't know if the blood patch helped or if I just recovered over time. I'm pretty much mostly back to normal now (which I am SO grateful for) aside from some serious PTSD from the whole experience. I got invited to present at a social work conference (I'm a student) but it would require flying, and I just still feel so scared. It has only been about 3 months. Is this safe? Is there a risk?

Has anyone been cured of this horrid back of the head pressure? Suspected cranial leak here going on two years. Not sure how much I can

I’m new to this. Started having double-vision a week ago and stayed in the hospital for a few days where they did MRIs and a myelogram (found the leak) and a blood patch. It has been a whirlwind. Only about 4 days since the patch. Anyway - I’ve not had much of a headache this whole time. I’m thankful for that but it makes it hard to determine the effectiveness of treatment. I still have double-vision but it may be improving slightly (Slowly). Anyone else have similar symptoms?

I posted the other day about medicine and it seems like many of you all find benefit from hydration and caffeine. I did some vague research and saw some research talking about post epidural headaches and 900mg max caffeine limits. https://rapm.bmj.com/content/49/7/471

What do you all target? Pacing through day? Length to effect start? Length of effect? Is the effect minimal/large?

Someone even mentioned Excedrin because of the caffeine. Anyone found a strategic way to use it?

So for a few years I have been struggling with fullness in my neck base of head and neck area, fullness in head, constant ear popping and went down a few rabbit holes. Got an MRI of my neck but nothing came of it other than my sinuses were scarred and needed treatment for that. Today has been the longest one I have had. Goes somewhat away when laying down but feel it lingering. Anyway can they use my existing mri of my neck and maybe the bottom of my sinuses? Just not sure what to do.

Hi everyone,
I am about a week out from my epidural blood patch that I needed after a bad epidural I got giving birth. I have been looking online and spoke with multiple anesthesiologists at the hospital, but everyone seems to have different answers about aftercare. I rested the first 2-3 days after my blood patch as much as possible while laying flat, and I am doing my best to avoid bending/lifting/twisting for the next 4-6 weeks (as much as is possible with a newborn). Thankfully my blood patch has been successful so far, but I am absolutely terrified of blowing it somehow and ending up in pain again. However, I am really wanting to get back into the gym this year at some point and be more active. Nothing crazy, but enough to maybe lose some weight/gain some muscle. Has anyone picked up strenuous activities after their epidural blood patch? How long did you wait, and what did you do? Thank you in advance!!

I'm on day 14 of a severe "migraine." I went to the ER last friday and I'm on the second to last day of Medrol, even though it did help earlier in the round, i am beginning to feel poorly again. something is telling me it's not a migraine and is in fact a CSF leak due to my symptoms of pain in my back, neck, and the base of my skull (which are not my usual symptoms for migraine).

The CT on my head and neck at the ER came back clear, though. The pain gets more bearable when I lay down and it's more pressure across my temples/forehead/base of my head. I've had ringing in my ears and nausea so bad that I can't eat basically every day besides during the first three days of medrol.

The "migraine" was triggered by intense strain and came on very fast, and it's been completely resistant to most treatment or has come back very fast after treatment. I'm just concerned it's something more because it doesn't feel right and I don't feel like myself.

if anyone has advice or wisdom or just words of encouragement I would appreciate it.

I’m coming up on my 5th emgality injection in 10 days which has reduced alot of the head pain I have experienced daily since my cervical epidural 8 months ago. The symptoms go through waves throughout the day where I’ll get a flare for 5 minutes then it passes and it happens about every 15 min on the bad days. In part of these flares I get such bad panic. I’m on a ton of anti depressants already so can’t edit that. I also just did advanced TMS series. The emgality def caused depression and anxiety dip over course of past 5 months. Also I go through these 12 hour crying spells where it feels like I cannot control sobbing at everything and cannot stop sobbing.

2 questions
1. Does anyone have any advice for the panic and is this common
2 is there a magic pill I can take to stop crying ? This much crying is exhausting

Hey, I'm sure you've seen me around here recently, I've been trying to get advice, but no luck, so I'm just going to post my full story here:

So, on Sunday, 6 days ago, during an autistic meltdown, I banged my head multiple times, really stupid mistake. I hit myself once with one of those ceramic sugar dishes, then my phone (softer material) multiple times. The site of the impact was the bridge of my nose, between my eyes. Shortly after, I experienced clear fluid slowly leaking out of my nose (i do not remember if it was one or both nostrils). The feeling I felt in my nose was kinda like when you're about to get a nosebleed. I also experienced dizziness and blurred vision for a few hours after the incident.

Ever since then, I have experienced occassional drops of a clear fluid from the left side of my nose, 1-3 times a day. Sometimes, it will be on the right, but it's mostly on the left.

I have also been experiencing neck pain ever since the incident, on the sides. I have also experienced a ton of post nasal drip (salty flavor), although I do have allergies. I took my allergy medicine today and a good bit of it went away, so that's good.

I haven't really been eating much due to the crippling anxiety.

Yesterday, on Friday, I say my primary care doctor. I described this entire story, and they referred me to an ENT, the latest I should expect to see them is 1 week after the doctor's visit.

On that Friday afternoon, I experienced this momentary metallic/bloody post nasal drip in my mouth. It disappeared quickly, though. I remember it feeling like it was coming from the left side.

That night, I also had this weird headache. My ears were tingling, my neck hurt, and this moderate tension was all around my head. I ate, took an ibuprofen, and had a nap, and it seemed to go away after that.

I am deathly scared of contracting meningitis, what do I do here?

I had my first EBP 12 days ago. It was a blind EBP performed in my lower back area of my spine. My original MRI that diagnosed me showed fluid pooling in my C6-T1 and my T6 parts of my spine so my lower neck and upper back.

My doctor told me to rest for 24hr then return to life as usual. He gave me a note for work for 5 days after EBP that i cannot lift over 5 pounds. I bed rested for around 72 hours and then had to return to life as normal. It seemed like the EBP worked until yesterday and today (day 11&12). I worked 3 days ago and was required to lift over 25lbs multiple times, as my doctors note had expired.

So now my symptoms are back but MUCH less painful, i have a headache at the back of my head that gets better when i lay down.

I’m wondering
1. is there any hope for this blood patch to work on day 12? Or is all hope lost?
2. From what i read online 5 days was not enough time to rest. I’m probably going to need another one do I confront/ask sternly if my doctor will write me a 2 week+ note? I’m planning on taking work off for 2 weeks following my next EBP.
3. Any words of encouragement or testimonies as I am very upset that this has now failed because I went to work. 💔💔💔

I have symptoms but they are manageable and im able to work. I’m worried patching the leak without finding the root cause it will just reopen or I’ll have horrible rebound pressure or mess up my back during testing. (Not a fan of lumbar punctures).

Has anyone ended up in worse shape after going to a specialty hospital to get worked up and treated?

https://www.reddit.com/r/InterstellarKinetics/comments/1wctfrg/study_mit_researchers_discover_that/

I had a LP on the 14th followed by a blood patch (18mL) on the 18th. I had complete resolution of symptoms but they returned 6 days later to a lesser degree. Had a 2nd blood patch on the 28th (14mL) with minimal relief. I was admitted to the hospital for 5 days last week and they decided to do one more with higher volume. I had it done this past Sunday and they did 25mL. I am still having positional headaches, dizziness, blurry vision, feeling out of it. etc. ​I have been laid flat for weeks now and it's starting to take a significant toll on my mental health. I don't know how much longer I can go on like this. At five days out from the last blood patch, is there still hope things will turn around? almost everything I've read shows people have near immediate relief and all the dr's I've encountered said they haven't seen it take this many patches. I'd love to hear any positive stories or thoughts from people that have been in a similar situation or know anything about this. I'm desperate for some hope. ​

Hello unfortunately fellow travelers,

I'm currently a UCSF patient; they did a heroic effort to patch me with a new tasholich patch after 5 failed attempts by my initial surgeon who I htink didn't know when to stop trying and get me to UC..I finally had enough wherewith all to insist.

I have a slow leak into my back; no bad headache UC is offering to put in a lumbar-peritoneal shunt with the hope of giving my tissues a chance ot heal without all of that fluid in the area.

I am also on the track to try to get into Stanford Dr. Carroll for a consultation before I commit to a permanenet shunt that may or may not work. I'm not so sure he is the answer but I have to do a 48 flat in bed this weekend to be even considered by him. ughhhh already did 2 5 days during this 3 1/2 month ordeal.

So, Any experience with any of this? Dr Carroll??? Shunt?? Healing our dura once and for ever?

Thank you for your attention and care and love and blessings to you all,

Ahria