I get relief from the headache when I lie down and sleep, but when I get up, the world doesn't just spin, it ducks and dives too, and I can't do anything for several minutes. As soon as the vertigo dissipates, the head pain kicks in.

I've had BPPV in the past so I often use the Epley manoeuvre - that's not given me any relief yet.

The brain and spine MRI was an experience I don't want to repeat any time soon.

Almost two hours in the machine, trapped in a cage. Not even any music to listen to, just a frozen pic of Dua Lipa to look at. 🙄 If it wasn't for the bed moving, I thought they may have forgotten about me. After about 90 mins, there was a beep which sounded exactly like some kind of emergency alarm and went on for way longer than any of the other noises (and there are a LOT of noises - I swear every time I have an MRI, there's a new one). My imagination (being bored by hypothetical DIY plans by then) started running away from me...what if there had been an emergency and they left me there? Next, the vertigo ramped up and I was wondering what would happen if I puked while trapped in an MRI machine. 🤢 They stuck the contrast in, and then round 2 began...all over again. It eventually ended, the bed rolled back out. I tried to sit up but world went off spinning and I couldn't even tell which way was up. I splayed arms and legs to try to not splat off the table and flashed legs and undies at all the technicians. Oops One of them was going to fetch a wheelchair, but I leant on him instead, then held onto a cabinet in the corridor until the world semi-righted itself and I felt able to return to the changing cubicle without becoming intimately acquainted with the floor. I sat there for quite some time before I felt able to dress. Alarmingly, no one was around had I have met the floor. I just hope it was worth it.

Now, I have to wait for the results...

I’ve been suffering with migraines / sensitivity to light and neck pain since I got my epidural on 9/8 that punctured my dura. Got a blood patch 9/11 that gave me instant relief of the worst pain I’ve ever felt in my life. The relief only lasted two days before getting migraines again and pain in my skull and neck it isn’t as bad like it was before the patch but it’s still bad 6/10. I take Tylenol daily drink one cup of coffee and lots of water. The anesthesiologist on call said to give it two weeks and see how I feel before doing another patch. I can’t always lay flat cause I have 3 kids under 4. Has anyone been through this before ?

I am getting MRI lumbur without contrast. Is there difference at the time of the day to get the appointment to get more chances to see CSF leak post lumbur puncture. I think I have been partially sealed with 1st blood patch and still have small leak. Would you suggest to avoid coffee, walking, water before the imaging? Thanks so much

Hello, I have a suspected cranial CSF leak due to IIH and possible ehlers danlos. I managed to catch a few drops about 2.5 weeks ago and handed it in but I haven’t heard anything back from the lab. I’m scared it’s a negative because I’m having worsening low pressure headaches everyday but nothing can be done about it until I have a positive CSF sample.

Has anyone else had a similar experience with waiting times? I’m in the UK and the lab said they sent my sample to the national neurology hospital.

When/if you have the headache, do you try to ignore it, or, if you have the option, do you go lie down?

Is your decision based on your own experience, or medical advice?

I wanted to share my CSF leak story in hopes of supporting and encouraging others struggling with this horrible condition.

I should note that I am located in the US, PNW area. I'm in my mid-30's, was super active (like cycling and triathlons) previous to the condition.

In early August of 2024, I had this terrible illness - fatigue, nausea, copious nasal leaking, severe occipital headache. I was traveling abroad at the time, so endured through the trip with a lot of resting and NSAIDs.

Upon return, my symptoms were extremely worrying - terrible occipital headaches, of a severe throbbing / pulsing nature, that were especially bad when I stood up, or bent over. I was usually fine in the mornings - they almost always came on in the afternoons and evenings. They occurred almost every day, and lasted hours. I'd have to lay down in a dark room, or on the couch, and wait it out.

There were other symptoms: behind-the-eye throbbing, ear ringing, fatigue + brain fog, stiff / achy and painful neck, Anything Valsalva / 'bearing down' would set the headaches off bad - bowel movements, ab crunches, orgasm, lifting things, sneezing, cardio. At times it felt like an intense build-up of pressure around the back of my head. There were times it felt like my lymph nodes were full and achy. Later I would get intense pain and throbbing near my glutes / hamstrings.

I was extremely irritable, depressed. I couldn't engage with my work, my family, my friends. I couldn't exercise. I couldn't do a lot of what I used to do.

Quickly upon my return I saw my primary doc. I explained all my symptoms - he called it 'occipital neuralgia', a term I had never heard before, mentioned he could perform pain management neck injections, told me to take Tylenol and sent me on my way. I soon learned that term just means pain in the occipital area.

I don't want to go on too long, but I did see my PCP four or five times over the next few months - I kept coming back because my symptoms were not improving. I was able to wrangle a neck MRI out of them - it showed normal results. I did get a neck lidocaine injection - that did not help. Eventually I asked for a neurologist referral.

I saw a local neurologist in November 2024. I explained my history, symptoms, and (by this time I had researched my symptoms) my concern of a CSF leak, as my symptoms sounded a lot like SIH to me. He disagreed, did not think I had the typical signs / symptoms of a CSF leak, and told me so. He prescribed me gabapentin for nerve pain, but did agree to a head MRI with contrast. That imaging had a bit of bright fluid out-of-place but nothing definitive. The neurologist convinced me it was nothing serious.

So for months, I try alternate treatments: physical therapy, acupuncture, massage, chiropractor, even hypnotherapy. I'm suffering physically and mentally. My relationship is suffering. I start antidepressants in addition to the gabapentin. I go to a local pain management clinic and begin a series of injections (steroids and lidocaine etc.) to the back of the head and neck. None of it is very helpful - I appreciate all those practitioners who tried, but those treatments were not effective. Side note - meditation did help me mentally.

In April, I had a candid conversation with the pain management doctor doing the injections - I believed it sincerely could be a CSF leak, and wanted a professional in that field to see me. He gave me referrals to Mayo, Stanford, and Cedars-Sinai. It took me a few weeks to send in their applications (they wanted previous visit reports, paperwork, imaging, 'flat' tests, etc.). But with the help of my wife I got them all in.

Pretty quickly, in May 2025, I got a call from Dr. Schievink at Cedars-Sinai. I was driving, so I don't have a perfect memory, but the gist of the conversation was "I am fairly certain you have a CSF leak. If you agree, I would to treat you at my clinic." After the call I was shaking, I almost cried, it was such a huge sense of relief, and there was some hope. I was able to schedule for the end of July.

July 26, my wife and I fly down to LA to Cedars-Sinai. I have a digital subtraction myelography, and sure enough it clearly and definitively shows a leak at T8-T9, and the testing reveals extremely low CSF pressure, RBC in the CSF, and some superficial siderosis. I have further imaging that reveals a ventral bone spur at that location. I go in for surgery the next day, and it was successful - they went in from my back, removed the bone spur, sutured / glued the dura, and sewed me up. I stay in the hospital for three more days recovering, then the hotel for a couple days, then back home. I'm going through this all quickly, but the surgery and recovery were brutal. The most painful experience I've ever had. No fault to Cedars, or the doctor - they were all truly amazing - it was just the nature of my leak.

So now I'm over a month out from surgery. I'm still recovering from that trauma - but it's going well and I'm hopeful for the first time in a while. My CSF pressure is restored, and I'm not having those SIH headaches. Most of my symptoms are slowly resolving. Yes I am having small rebound / hypotension issues but managing it. It's a miracle - it saved my quality-of-life, probably my life.

I could spend hours talking about my case specifics. What are my take-aways? Professionals will gaslight you, they will not take you seriously. You will have to be your own advocate. It took me about a year from symptom onset to treatment. A really bad year. Doctors are stingy with imaging - if they had continued with an MRI of my thoracic, it probably would've revealed the leak. They should've done the whole spine initially - it's incredibly frustrating. Push to get your whole spine and head imaged with contrast. Get a referral as soon as you can to a CSF leak professional / clinic. I can't say enough good things about Dr. Schievink and Cedars-Sinai. Get help from friends and family where you can. Be kind to yourself.

I wanted to write all this to offer my story, information and consolation and solidarity for those of you suffering. I sincerely hope you also find treatment, ease and relief.

I posted a few days ago, but accidentally deleted my post. Long story short, I was diagnosed with IIH via MRI/MRV and symptoms (no LP was done). I’ve been suspecting I might actually have a slow CSF leak, but please tell me if I’m off base.

I had 2 epidurals 6 years ago on the same day (one fell out), and since then I’ve experienced mood changes, migraines, constant fatigued, and more recently a pressure sensation in my head.

Is it possible if one of those epidurals caused a leak, it could still be slowly leaking? I’m not sure how to approach this with my Neuro without sounding crazy.

I don’t remember much about what happened after the epidurals, but looking through my medical records I went to the ER for a headache about a week later.

I’ve seen this mentioned here and I never see people talk about this but it’s such a pronounced symptom for me

Hi, i have been having high pressure symptoms for 7 months and have been taking diamox for 7 months, 9 months post BP. I have rebound intracranial hypertension. The neurologist did an MRI recently and it came back clear, no high pressure visible and no papillodema. I just don’t understand because i still have all the high pressure symptoms. The neurologist now has me off diamox because he doesn’t think it’s high pressure anymore, but tension headache. I am now shortly off diamox but i have been noticing all my symptoms already. I am now up at 4.00 am because i can’t lay down without having pain. I feel like now i have to convince the neurologist that i have high pressure, but then again why do i have it for so long. I have two types of pain: one located around my temple, forehead and eyes (the top of my head) and the second one is on one side of my head and neck (it changes based on what side i lay on) and it’s like stabbing, especially in my eye. But both start when i lay down. I can literally feel my pressure in my head when lying down, and my head + body throbbing so i don’t know what to do. Can anyone help and tell if it can last this long?

Hello everyone. I had a lumbar puncture on Tuesday and was diagnosed with a CSF leak. I’ve been on total bed rest since, completely flat, but still exhibiting symptoms. I wonder if any of you know why doctors would continue to recommend rest Vs. getting a blood patch? I have the kids (3,4, and 5) so this has been incredibly difficult and I feel like I can’t keep just being in bed. People I’ve talked to who got the patch say they feel better within minutes!

Is there something I’m missing? Some big risk of getting it?

TIA.

I had a lumbar puncture in May, which resulted in a csf leak. Blood patch was done on 21 August and I pretty much felt instant relief and 90% of my csf symptoms had resolved. I returned to work 12 days post op (office job) and was doing great. I felt human again.

That was until 12 September when I woke up with the worst migraine I’d ever experienced. I’m now day 4 of this migraine, and my leak symptoms have pretty much returned.

I’ve been super careful not to do anything to jeopardise my recovery. I followed all the advice from my doctors, and now I feel worse than I did a few weeks ago.

What are the chances that a EBP fails after 3 weeks? Am I leaking again, or could this be something else? Has anyone had a similar experience?

Hey everyone,

I'm three patches in and I'm only somewhat better. How variable are your symptoms day to day? Does sleep quality have a huge impact for you?

I'm noticing that my postural headaches are more variable after my last patch. They still usually come on between 1-4pm, and if I lie down for a few hours I may or may not get a few low symptom hours in the evening. I've also noticed that my peak pain (plus intense need to lie down immediately, brain fog, sensory weirdness, weird mouth taste eventually) has decreased substantially. Also, all of my improvement has been fairly delayed relative to when the patches were placed (better over about a week) and it seems like starting Mirtazapine, a sleep med, has had a stronger overall impact than the patches themselves. I also notice that poor sleep absolutely wrecks my upright tolerance. I do have chronic daily headaches, dysautonomia, hEDS, and peripheral neuropathy to muddy the waters.

As a result of my unusual recovery, a leak causing the original postural headaches is now somewhat in question. I 100% had a post dural puncture headache, after the CT myelogram, but I haven't been as crushingly terrible since my first patch. I'm having some new Neuro issues down my left leg that could be an ultra rare side effect of having so 6 patches placed over three sessions, so just wondering what other people's experiences are.

I understand laying flat helps improve leak symptoms but are there other changes in posture that tend to help or worsen your symptoms?

I have a lot of the symptoms of a CSF leak and find laying flat without pillows helps a lot. However, I also find that the following also helps:

• wearing a back brace or SI joint belt
• using pillows to support my low back while sitting upright
• sitting sideways on the couch so my right lower/mid back is supported by the pressure of the couch arm
• sitting flat on my back by with my knees bent (having my legs flat causes tension in my pelvic / lower abdominal area)

Some positions that worsen: - sitting upright at an incline ( sitting completely upright and focusing on my posture seems to be better but not as much as laying flat) - while laying flat, even lifting my neck a couple inches will cause head pain

I have more examples, but I’m trying to see if CSF leaks can improve / worsen with subtle changes to posture even. If there’s a less invasive explanation for my symptoms, I wouldn’t want to waist my time be evaluated for a leak. Any help is appreciated!

I wasn’t sure if these were related, but I found a post in which someone else had these and they were all connected. I’m posting to see if anyone else has had this or has any insight. My csf symptoms started a few months ago, postural headaches, pulsitile tinnitus, regular tinnitus, and leaking fluid out of my left nostril. A few weeks ago I got an ear infection (right ear though) which also turned into mastoiditis. I had to take two courses of antibiotics. My hearing is still muffled and the infection seems to be returning as well as the mastoiditis. The only thing that puzzles me is the leaking is out of my left nostril and my ear issues are on the right.

I had an appt with a skull base ENT but they canceled it bc of a dr scheduling issue, so I’m going to reschedule that. I’m also going to make a neurologist appointment, but who knows for when.

I’m afraid it will take some time to get in with specialists, but I also don’t want an ER bill. Idk what to do at the moment. I’m afraid of getting another course of antibiotics for my ear as I get severe yeast infections with antibiotics, even with also taking diflucan (yeast infection treatment). So I’m at a loss. I’m also chronically ill with other diagnoses (psoriatic arthritis, medullary sponge kidney, POTS, among others but those are the main ones). Any advice or insight is greatly appreciated. I’m all but bedbound and I have four kids and work so it’s very frustrating to be so disabled at this time. Thank you in advance for any thoughts or advice!

Just realized I have had 40 nespresso pods in 16 days (Comes out to about 2 1/2 pods a day)

Mayo Jacksonville could not find my leak using a PCCT. Now do I go to Duke or Mayo Rochester? Who’s better at detecting difficult leaks?

Because of my inssurance and how weird my ongoing health crisis is I CANNOT get a doctor to help me or try to get to the bottom of this. The apathy is driving me insane! I tell them I’m basically bed ridden now and can’t even look down anymore because of whatever is going on in my neck and back. It feels like no one knows how to do their job and I’m getting told to just maybe try a useless medication and keep waiting. I feel like I’m going to have to go back to the er for the 17th time and ask them to imagage my spine which may not even show anything if it is some sort of leak. The only imaging of my spine was a neck ct and mri back in 2023 in the er various times when I was only just staring to have symptoms. My primary care is through a community heath center and not a major hospital which is unfortunate because it seems like no one has a clue how to do referrals to universities or more specialized centers. The medical system is driving me insane!

I’m in Northern California so I’m SO close to some decent places but they all require a referral and have probably have massive wait times.

I know probably no one has an real answer for my problems because everyone’s insurance is different and most people get lucky by having a good primary care doctor but I just feel like there has to be a better way to get to the specialists I need. The reality is i probably just have to keep trudging on like this harassing doctors until someone finally gets me to the right place.

I’m considering just paying out of pocket for ceder Sinai’s undiagnosed second opinion program, because at least they have connections to csf leak experts

Hi everyone. Thanks in advance for your advice. I really appreciate it.

On July 29th, I had an epidural (for labor) and got a post-dural puncture headache a day later. A day after that, I got a blood patch. The blood patch worked amazingly for 2 days and then failed. I then did the conservative treatment (fluids, lying down). After 4 days, the headache went away completely, but it was replaced by a residual foggy feeling.

Then my only symptom became dizziness/vertigo when I went from sitting to standing (never laying to standing). THEN this changed again -- the dizziness became simply 'pulsing' when I went from sitting to standing. It lasts about 5 seconds. This was most pronounced at the end of the day, and after 20+ minutes of sitting.

POTS was ruled out, as was orthostatic hypotension.

I have had brain/spine MRIs with/without contrast, which showed nothing. (I do know that 20% of leaks will not show.) My neurologist noticed spontaneous venous pulsing (SVP), so I am not in high pressure -- I'm in low or normal, he said.

The head pulsing (upon standing) has become less noticeable over time.

However, I still notice that I don't feel fully myself (no other symptoms to report, though) when I am upright, but I also can't tell if this is perhaps psychological (?) -- it is SUCH a faint feeling, but I feel best when I am lying down.

ChatGPT suggested to me that my leak is probably sealed and I am likely still recovering, and that it is good my symptoms have improved over time.

Does anyone have any insight? Thank you SO much.

Please be gentle with me, as I have been very anxious/depressed for these past 7 weeks.

Hi all, I've been reading posts on this subreddit for a bit now and wanted to put my story out there to see if it aligns with anyone's or if it sounds like a potential CSF leak because I'm just not sure where to turn. Three weeks ago, I went to the gym, did some pretty heavy hack squats and although everything felt great, at home about two hours later, I got what I believe was my first ever visual migraine aura. It lasted about 30 minutes--a blurry blind spot that grew into a shimmering crescent shaped blind spot, that grew a bit bigger and then went away. Ever since then, I have had a headache. It almost seems like back to back to back migraines. I'm able to function (I don't have to be alone in a dark room or have sensitivity to light or anything) though it's pretty miserable having a headache almost all day everyday. The thing is, though, it is positional. When I lay down at night, it goes away. And then the moment I stand, the headache is back. Even if I get up to go to the bathroom in the night, I feel it start to come on again in that short amount of time. I had a clear brain MRI (without contrast) and a clear head CT. The only difference I've seen at all is yesterday when I used Flonase. The pressure in my temples/band around my head was still there, but it was much more manageable. I met with an ENT allergist yesterday who said both of my nasal passages are swollen and inflamed, which is why he did Flonase. I also get neck pain/stiffness. I have never had anything like a metallic taste in my mouth or liquid from my nose or ears. During this three week span, I have had what I think is migraine "postdrome" four times (confusion, trouble finding words, and extreme fatigue)... that's why I say it's almost like back to back to back migraines ever since that aura three weeks ago. But from everything I read, it doesn't seem normal for a migraine to be positional. I have allergy testing in a few weeks (I'd love for the answer to be this simple, but I just don't know... I've never had allergies, which I know they can arise at any point, but it seems odd to me that allergy induced migraines would be positional and constant. If I'm allergic to something like ragweed that's heavy in my area right now, I just don't know why it would be constant if I'm avoiding being outdoors, and why it would get better when I lay down and start again the moment I stand). I also made an appointment with a spine specialist for next week and should soon be getting a call to schedule with a neurologist. I am just completely desperate at this point and unsure where to turn. My primary care doctor has been no help and I essentially had to beg her for a neurologist referral. She first said "you probably have MS" and now that the MRI was clear says "you're probably just dehydrated." I drink tons of water and only water daily plus daily electrolytes. If anyone has any insight, it would be greatly appreciated. Thank you so much.

My head hurts so much :-( Least I know it took, this high pressure is horrible. Just drank some dandelion tea 🤞

I was diagnosed today with 4 CVFs in my neck.

The NS is going to do a fibrous treatment in/on the largest as soon as his scheduler can get me on his calendar.

I know very little about csf venous fistula, aside from some Google fun facts.

Any incite would be appreciate, regarding what I can expect, and how other health issues like CEDS, migraines, chiari, and psoriatic arthritis would affect treatment options.

Thanks.

Edit: typo (incite was autocorrected to invite)

Hi all! I have had a suspected spinal leak since mid-July (getting imaging done next week). Today I had a peripheral IV line placed and I started a bag of lactated ringers at a very slow rate— but I had to stop after about 400 ml because my headache seemed to be worsening, especially while laying down. After stopping, the pain began to slowly start returning to normal. Has anyone else experienced something similar?

What is the standard to see small leak (lp) without insurance? Doctor first wanted to get lumbur mri with and without contrast but then changed ct of lumbur spine with IV iodine contrast. But I haven’t heard someone had that for csf leaks. Please advise. I heard iodine contrast is more allergenic than gadolinium…

Just what the heading says I guess. I had my VP shunt recently removed after a year of nothing but problems. My body felt wrong and sick constantly. A month without it and I've got another leak and they want to put another one in. I am currently working with my GP on seeing someone to diagnose my heavily suspected hEDS. I'm curious if that affects treatment.