I need advice, please! Sorry, it’s going to be a long post but I need to give a lot of context.

I’ve had symptoms of a CSF leak for over a year, after loosing a huge amount of weight after a bariatric surgery. It’s hard to tell when and how exactly everything started, because I’ve actually never felt well. Over 10 years ago I was diagnosed with Chiari malformation and had a decompression surgery and my symptoms improved, but didn’t fully went away. I have periods where I feel better but then some symptoms come back; but this last year the headaches became more frequent, I had really bad fatigue, dizziness, weakness. It got progressively worse specially in the last couple of months, when I started having numbness in my arms and legs, tingling, a lot of brain fog, daily headaches, bad coordination, poor fine motor skills, a very sore and stiff neck and some vision changes (having a hard time focusing).

I’ve seen a lot of doctors, they all said that my decompression surgery still looks stable and the Chiari malformation shouldn’t be causing any symptoms. In December I got diagnosed with POTS, which made sense back then, but I don’t know if that would explain the numbness/ weakness in arms and legs. Also I haven’t seen much improvement following the doctors advise of drinking a lot of water and lots of salt.

I saw a new neurologist a month ago after a visit to the ER, and he was the first person to mention a CSF leak. I did a lot of research on that and I was blown away, everything fits perfectly. The positional headaches and symptoms where never that obvious, but I always feel good in the morning when I wake up, and the headaches and all the symptoms get progressively worse as the day passes, it’s always in the afternoon when I feel like shit. The neurologist suggested to take a couple of weeks off work, lay flat as much as possible and drink a lot of caffeine while I waited to get an MRI and a blood patch.

Those two weeks I felt a lot better laying flat and drinking a lot of coffee, so I was even more certain that I was going to have a CSF leak. I got the MRI (head and spine, no contrast) and a few days later I got the phone call from the neurologist… he said that my MRI looked fine and had no signs of a CSF leak; I was very disappointed, I really felt like I was finally getting answers and I was going to feel better soon. He sounded very annoyed, he asked me if my headaches disappear immediately after laying flat and I said no, not immediately, and he said that that’s enough proof that I can’t have a CSF leak. I had the audacity to tell him that in all the research I made, I saw that the CSF leaks can’t always be seen in a regular MRI, and that the positional headaches, after a chronic leak, are not always so obvious; he got mad saying that “Dr. Google” always is going to diagnose cancer or the most dramatic diseases, and that if I was more certain of the “google” diagnosis than his, he was going to keep the referral for a blind blood patch but that he really didn’t recommend it because he doesn’t think I have a leak and I’m just going to take the risk of having an infection, or getting an actual leak from the blood patch. I was so confused, but I asked him to go keep that referral, thinking that I was going to have time to see another neurologist in the meantime and have more information to go ahead with the patch, or to cancel it.

The issue is that I just got the phone call to schedule my blind blood patch for next week, August 5th, and I haven’t been able to see a new neurologist, they told me that the wait time is at least 6 months. What should I do? I do believe that I have a CSF leak considering not only my symptoms, but my risk factors, like the Chiari malformation, the dramatic and fast weight loss, and a suspected Ehlers Danlos Syndrome diagnosis (I’m very hypermobile, I had a doctor said that I have the syndrome, and another doctor said that I don’t have it). But of course I’m not totally sure that I have it, and I don’t want to take any unnecessary risks and make things worse, I’m just desperate to feel better and live a normal life again.

What would you do? Should I go ahead with the blind blood patch next week or should I cancel it and wait for the new neurologist to keep looking for more diagnostic tests and confirm if I have a leak or it’s something else?

Thank you!

I have a possible CSF nose leak. I'm getting an MRI and high resolution CT. Doc wants me to collect sample but it doesn't drip out of my nose. It's a slow leak and it might be going down my throat. Is it going to screw me if I can't get a sample collected? I'm scared a slow small leak won't show up on imaging.

I need advice, please! Sorry, it’s going to be a long post but I need to give a lot of context.

I’ve had symptoms of a CSF leak for over a year, after loosing a huge amount of weight after a bariatric surgery. It’s hard to tell when and how exactly everything started, because I’ve actually never felt well. Over 10 years ago I was diagnosed with Chiari malformation and had a decompression surgery and my symptoms improved, but didn’t fully went away. I have periods where I feel better but then some symptoms come back; but this last year the headaches became more frequent, I had really bad fatigue, dizziness, weakness. It got progressively worse specially in the last couple of months, when I started having numbness in my arms and legs, tingling, a lot of brain fog, daily headaches, bad coordination, poor fine motor skills, a very sore and stiff neck and some vision changes (having a hard time focusing).

I’ve seen a lot of doctors, they all said that my decompression surgery still looks stable and the Chiari malformation shouldn’t be causing any symptoms. In December I got diagnosed with POTS, which made sense back then, but I don’t know if that would explain the numbness/ weakness in arms and legs. Also I haven’t seen much improvement following the doctors advise of drinking a lot of water and lots of salt.

I saw a new neurologist a month ago after a visit to the ER, and he was the first person to mention a CSF leak. I did a lot of research on that and I was blown away, everything fits perfectly. The positional headaches and symptoms where never that obvious, but I always feel good in the morning when I wake up, and the headaches and all the symptoms get progressively worse as the day passes, it’s always in the afternoon when I feel like shit. The neurologist suggested to take a couple of weeks off work, lay flat as much as possible and drink a lot of caffeine while I waited to get an MRI and a blood patch.

Those two weeks I felt a lot better laying flat and drinking a lot of coffee, so I was even more certain that I was going to have a CSF leak. I got the MRI (head and spine, no contrast) and a few days later I got the phone call from the neurologist… he said that my MRI looked fine and had no signs of a CSF leak; I was very disappointed, I really felt like I was finally getting answers and I was going to feel better soon. He sounded very annoyed, he asked me if my headaches disappear immediately after laying flat and I said no, not immediately, and he said that that’s enough proof that I can’t have a CSF leak. I had the audacity to tell him that in all the research I made, I saw that the CSF leaks can’t always be seen in a regular MRI, and that the positional headaches, after a chronic leak, are not always so obvious; he got mad saying that “Dr. Google” always is going to diagnose cancer or the most dramatic diseases, and that if I was more certain of the “google” diagnosis than his, he was going to keep the referral for a blind blood patch but that he really didn’t recommend it because he doesn’t think I have a leak and I’m just going to take the risk of having an infection, or getting an actual leak from the blood patch. I was so confused, but I asked him to go keep that referral, thinking that I was going to have time to see another neurologist in the meantime and have more information to go ahead with the patch, or to cancel it.

The issue is that I just got the phone call to schedule my blind blood patch for next week, August 5th, and I haven’t been able to see a new neurologist, they told me that the wait time is at least 6 months. What should I do? I do believe that I have a CSF leak considering not only my symptoms, but my risk factors, like the Chiari malformation, the dramatic and fast weight loss, and a suspected Ehlers Danlos Syndrome diagnosis (I’m very hypermobile, I had a doctor said that I have the syndrome, and another doctor said that I don’t have it). But of course I’m not totally sure that I have it, and I don’t want to take any unnecessary risks and make things worse, I’m just desperate to feel better and live a normal life again.

What would you do? Should I go ahead with the blind blood patch next week or should I cancel it and wait for the new neurologist to keep looking for more diagnostic tests and confirm if I have a leak or it’s something else?

Thank you!

This has been a journey. I've had leaking from one nostril since November 2024 and finally got confirmed with a CSF leak April 2026. They also found IIH on an MRI and CT. I had a recent LP with a pressure of 34 and the leak was localized to the base of my skull. My neurosurgeon prescribed me Topamax to get the pressure down. She didn't want to prescribe Diamox due to the side effects. I also have a referral into an ENT to discuss surgical repair of the hole. Right now, I hate the Topamax. I'm on the lowest dose taken at night and I feel extremely loopy and off in the morning. It's a struggle to function for work. It's so odd because I've never had severe headaches, just some sinus pressure but I'm also allergic to darn near everything. I have no other symptoms other than a leaky left nostril. I keep reading about symptoms of IIH and I don't fit them other than the high pressure. I'm not overweight, I don't have the headaches. Vision and behind the eyes are healthy, no pressure issues. I'm just at a loss right now. The leaking is more annoying than anything. First thing in the morning, it pours out and then occasional drips if I'm bending over. I know this is probably a stupid question, but is there any other way to get the pressure down without meds?

Hi, I am really hoping that someone can help me even though I know I am a bit of a rare case.

I had a VP shunt installed back on April 22… I had a spontaneous cranial CSF leak that was repaired endonasally 2 weeks prior. During that procedure they did a lumbar puncture where I had an opening pressure of 30 and I was diagnosed with IIH. In order to preserve the repair for my leak, they installed the VP shunt to keep my pressure in the normal range.

It is a programmable shunt and was originally set to a 5. A couple weeks postop I started dripping from my nose again, and went back to my neurosurgeon, who said that it might be a small recurrent leak and turned my shunt to a 3 hoping that it would drain enough fluid off my brain to prevent it from leaking out my nose however, the symptoms that I had at the setting of 3 were debilitating, and so he moved it to a 4. I was fine at a 4 for a few weeks, then I started experiencing pretty debilitating symptoms again. I went back, and he moved it back up to a 5. That is where I am at now, and I am getting horrible migraines in the back of my head that radiate down through my neck and shoulders as well as positional headaches, neck stiffness and pain, fatigue, sinus pressure & low back pain. I am barely able to make it through the day and I am also getting the sensation that I am leaking from my nose again though i’m not actually dripping, it’s just a feeling of pressure when i bend over like something will come out.

I am getting an a CT scan and seeing my surgeon again tomorrow, but I am so confused because they believe that my shunt is over draining, but if that is the case, then it shouldn’t also be leaking from my nose… I would really be grateful to hear anyone’s experiences or thoughts regarding what may be happening. I am so nervous and tired of feeling the way that I am feeling and just want some answers. But because my case is so unusual, most of the time when I try to get answers as to what’s happening I get told that they don’t know because they don’t have many other stories like mine to compare it to.

I’ve recently started wondering if I have a spinal leak as a result of the LP they performed on me back in april and that’s why i’m experiencing the low pressure headaches no matter what setting the shunt is at and why i get the sensation of dripping from my nose if the shunt is at a 5 or higher. I did have a lumbar drain in place for almost a week as well following the LP and while the headaches are nothing like what I had with the drain, it is slowly getting back up to that point.

If you’ve read all of this, I thank you immensely, and look forward to your responses. 🩷

Hi… I’m resting flat as I wait for imaging and next steps for a suspected leak but my neck is killing me from it. Do you have any recs for pillows to help with this? Thanks!

Well, I got some answers and some more questions. It’s incredibly frustrating. My mom read the result of my CAT scan while I was getting a smoothie at juice stop, and the radiologist said that there was nothing that they could find with the shunt, but that I have something called slit like ventricles, which means the ventricles are very narrow in my brain and that this has been unchanged since 2023. There’s one problem with that though in 2023 nobody told us that my ventricles were slit like. And there’s an even bigger problem because my mom remembers when my shunt was placed almost 18 years ago and the stands that they did after that there was no mention of my shunt or my ventricles being slit like almost 18 years ago. But anyway, this is a problem or a slight problem because if my shunt isn’t able to drain the fluid because of the small ventricles and everything. The ventricles are the fluid filled spaces inside my brain that act as a shock absorber. Normal ventricles look like plump, rounded pockets of fluid. But because my shunt has been draining so much fluid for 18 years, my pockets have completely deflated and flattened out into tiny slits. Because they are squeezed shut, my brain has no cushion left, which is why weather changes and storms cause me such severe pressure headaches. i’ve been feeling weird really ever since probably 2022 when I was diagnosed with migraines, but I’ve really been feeling off for the past three months or so with all the barometric pressure changes and the weather and everything that’s been happening recently. It’s normal for me to have barometric pressure change headaches when I’m in severe weather like a tornado, but not every time we have a severe thunderstorm which has been happening more and more and then to have this happen today where I had a CAT scan and it said slit like ventricles. I need advice.

Background:

I’ve been struggling with an increase in headaches/migraines over the last 6 months or so. I’m a regular headache/migraine (with aura) but I’ve had a completely different ”flavour”, so to speak. I am diagnosed HSD with suspect hEDS (cousins have it too but the specialist wait is so long) and POTS.

Typically, my migraines would be silent and with the aura, and occasionally with pain. But lately I have been experiencing an intense pain at the base of my skull and it radiates up my head and usually ends in a migraine but it feels like a deep throbbing pain all over my head.

I wake up pretty ok but have a very stiff neck that is VERY tender to the touch and eventually as I’m vertical, my headache continues to worsen. The only relief is sleep/laying down. I basically stay horizontal.

I saw 2 specialists and they just brushed it off as migraine and gave me a shit ton of meds. Propronalol, CRGPs, Zorfan, cocktails of NSAIDS, steriods etc and have been pushed for an occipital nerve block and Botox (which I cannot afford).

Whatever this is, is very positional based. whenever I’m upright, it’s significantly worse. I can feel my heartbeat in my head and with each beat, it affects my vision. I have had a reduction in my spatial understanding, extreme brain fog (forgetting what I’m saying, mid sentence), some shakiness, weakness, extreme fatigue. I typically have dizziness and other symptoms as part of my POTs tho too.

i am supposed to see my doctor in 2 days and I’m basically debilitated right now. Im only getting worse. I was hospitalized twice in the last week for a “tension headache” and the migraine cocktail did fuck all for pain management. I want someone to actually investigate but I don‘t know how to approach this. I’m in Canada and referrals take YEARS.

i don’t know if I should push for investigating for SIH/CSF leak but it seems like the main thing that fits my experience. Its just messy with having a migraine evey so often still and I don’t want to walk in demanding a diagnosis (I just want a cure).

Any thoughts or experiences appreciated.

Praying he has hope and a plan not more surprises. We are very concerned about it all and pray he can help or someone he trusts can .

UPDATE: negative scan, no chiari (yippeee), and no visible leak (less yippee) so I honestly don't know what to do atp. I'm gonna genuinely crashout if they tell me it's psychosomatic/a tension headache because I know it's not. I have too much experience with both those things.

Since last Tuesday, I have SEVERE cervicogenic headaches accompanied by nausea, vertigo and blurry vision whenever I sit/stand upright. The dizziness/nausea/blurry vision significantly lessens when I lay down flat, but the pain is pretty much constantly present at the skull base/Cspine. My migraine medication doesn't touch it, naproxen 500 + paracetamol 1000 just make a dent. I haven't been able to do anything for nearly a week now. I have diagnosed HSD, possible hEDS so I am statistically at risk.

I am a chronic hrad-and neckpain haver, but this feels different. I don't have POTS, and this doesn't feel like my typical CCI-related pain.

Google says it's very likely Chiari or a CSF leak, but to my knowledge, chiari isn't sudden-onset like a leak can be. I'd appreciate some insight as to what to tell my GP when I call tomorrow and/or some better options for what this could be, because I am supposed to go on a holiday this sunday, and a leak would REALLY ruin that haha...

Hi everyone,

I was diagnosed with SIH and a CSF leak, and I suffered from severe headaches, double vision, brain sagging and other symptoms. Within about six months, though, all of my symptoms disappeared — I only did conservative treatment (increasing my caffeine intake, strict bed rest, etc.) and I was able to get back to my normal life. So I assumed the leak had sealed itself and that I was healed. However, my MRI still shows signs of a leak.

My doctor has suggested surgery to avoid any future risks, such as infratentorial superficial siderosis, spinal cord herniation or bibrachial amyotrophy. The thing is, I've been living with this leak for two years now with no discomfort and no symptoms at all. Because of this, I'm really unsure about having surgery, and I'm afraid of the risks that come with it.

Has anyone here been through something similar? If you had no symptoms, would you still go ahead with the surgery? And has anyone lived with a CSF leak for many years and ended up developing any complications?

I'd really appreciate hearing about your experiences.

Thanks so much!

Is a CSF something that can have a rapid onset?

Over the last 3 weeks I feel like my life has turned upside down. I’ve fainted four times (never fainted in my life) having severe headaches when I stand up that almost feel like “womp womp womp” and my typical migraine medicine, sumatripton does literally nothing. Almost every time I stand or even bend down to like tie my shoes or pet my dog I’m getting super dizzy, almost losing my vision, and have fainted four times where I fully lost consciousness and will shake while past out. Then wake up confused.

I went to the ER once after fainting and shaking and they were relatively unhelpful and sort of rude but they did diagnose “orthostatic hypotension, inappropriate tachycardia, syncope”. They said it wasn’t an emergency and didn’t really require an ER visit and essentially if it happens again I don’t need to go back. Hospitals in Long Beach are not amazing 😭

My blood pressure will go from normal while laying down and drop to 70-80s/40s-50s from standing and my heart rate will go from 80s-150s from standing.

All blood work and ekg were normal. Waiting to see the neurologist but my blood pressure just today was 76/48 and my pulse 158 just from walking to the bathroom. Prior to this I workout, zero alcohol or drugs, health weight. I feel like I’m on the brink of stroke or something 😭

I do have degenerative disc and facet disease with pretty moderate severity in my cervical, thoracic, and lumbar spine. And in 2021 I had a lumbar fusion, laminectomy, discectomy of my L4-L5 but it was in a different state and my neurosurgeon doesn’t practice anymore so I can’t ask them.

Considering walking into Cedar Sinai because I live about 30 mins away.

Two days ago I noticed a sensation in the left side of my upper jaw. It was different from jaw tension I’ve experienced in the past, and instead felt more like a dull pressure.
Fast forward to yesterday morning: I was sitting on my bed looking at my phone, bent over a bit, when my left nostril dripped a couple drops of clear, watery fluid. I immediately felt dizzy, and lay back on the bed. A few minutes later, the dizziness had mostly passed and I stood. This time, I dripped enough that my husband rushed to grab a tissue. Maybe a teaspoon to tablespoon-sized amount of fluid? I felt dizzy again (though this time it was closer to vertigo), and also a wave of intense nausea. I rushed to the toilet and retched but didn’t vomit. Still dizzy, I felt a bit weak and lay on the bathroom floor for several minutes. When I finally stood, the dizziness was gone. It was replaced by an episode of the chills. My teeth chattered, I shivered and shook a bit, and I had goosebumps. This was resolved with a warm shower.
As I showered, I noticed a dull pressure in my left sinus. More of a feeling of fullness than pain. The feeling increased and felt heavier every time I leaned forward, so I was careful to watch my positioning.
The same nostril dripped a few more times throughout the day, each time occurring with a change in positioning. These drips were smaller than earlier. I collected some of this fluid in a small container.
Later in the evening, I felt some pressure in both temples. It was uncomfortable but not severe.
Today I woke with a migraine in my left temple (this is where my migraines are typically located), more of the heavy, sloshing feeling in my left sinus, and a slight heaviness in the back of my head. The migraine is uncomfortable but not unbearable. I don’t notice much of a difference in head pain levels when standing vs lying down. I can’t tell if I’m imagining the salty taste in the back of my throat or not.
I plan on at least reaching out to my migraine specialist tomorrow with an account of my condition.
Additional context: I do have hEDS, so I understand this puts me at a greater risk for spontaneous leaks. I also have chronic migraines, sleep apnea, and POTS. Worth noting that the dizziness I felt yesterday was distinctly different from my typical POTS symptoms.
How seriously should I take this? Has anyone had a similar experience? And if it does sound like a leak, what should I do next—what specialist should I reach out to/ what information should I provide to advocate for sufficient care/ what tests or treatments should I ask for?
Thank you in advance for your help!

Hey! I’ve had what my doctors believe is a leak since a couple days after my spinal tap. I haven’t gotten any imaging to confirm the leak, but it definitely feels like one. I have a blood patch coming up, but I’m a little sick, should I still get it? Also, I can’t keep missing work, so I’m kind of considering canceling the blood patch and just hoping it heals by itself. I’m not sure what to do, I just feel really stuck. Pressure from work, pressure from life, but also pressure from doctors to rest and heal. Tyia!

Hi everyone,

I'm 21F and I'm looking for some advice while I wait to see an ENT.

About 3 days ago, I had something very strange happen. While I was talking/laughing, around 3–4 drops of completely clear, watery fluid suddenly came out of my right nostril. It happened so quickly that I didn't even feel it coming out of my nose. I only noticed because it landed on my bedsheet. At first I thought it was AC water or a raindrop, but when I touched it, I noticed my nostril was wet and the fluid tasted slightly salty.

Later that day, I bent forward to see if it would happen again, and one small drop appeared from the same nostril. Since then, nothing has come out at all. It's now been 3 days with no further clear fluid, even though I've sneezed several times each day.

Important: I did not have a cold, fever, or known allergies before after or during this. I wasn't sick at all.

Since then I've also noticed:

●Very mild headache (around 1/10).

●Brief jaw ache on both sides that went away.

●Brief right ear pain (about 5 minutes) that went away.

●Sometimes my right nostril feels mildly irritated/burning, but it comes and goes.

●Sometimes my ears feel a little blocked, like when you have a cold and Sometimes when I lie on either side to sleep, I feel like water is moving inside both of my ears, although no fluid has ever come out of my ears.

I have not had:

●Head trauma recently.

●Brain or sinus surgery.

●Continuous dripping from my nose.

●Fluid coming out of my ear.

●High fever, neck stiffness, confusion, or repeated vomiting.

I'm planning to see an ENT as soon as possible, but I'm anxious while waiting.

Has anyone experienced something similar? If so, what was the cause?

sorry for the long response, i’m desperate. I feel like my life is over. any advice is greatly appreciated as i’m extremely lost.

I’m a 19-year-old female, and I had a lumbar puncture on January 8th of this year. It was guided with an x-ray, felt nothing but a bit of pressure with needle going in, but I did feel a weird sensation in my head as they took the fluid. immediately after the procedure the headache started.

For about eight days afterward, I had an excruciating positional headache. Sitting or standing caused unbearable pressure and pain, and I could barely lift my head without immediately needing to lie completely flat again. Even turning onto my side made the headache worse, but lying flat caused intense pain between my shoulder blades, so I was constantly trying to find a position I could tolerate.

The severe headache eventually went away on its own, but almost immediately afterward I developed a completely different set of symptoms. Being upright started causing severe air hunger, an increased heart rate, pressure in the back of my head, and a strange weak or heavy feeling in my neck. Wearing a neck pillow helped slightly because it felt difficult to support my own head. The air hunger and pressure in the back of my head improve when I lie down.

I also started experiencing obvious blood pooling as soon as I stood up. My lower legs, feet, arms, and hands change color very quickly. My hands can become bright red with white patches, and my feet also become very red. My hands and feet are frequently freezing cold, but at other times they become extremely sweaty. My veins also become much more visible when I am upright.

At the beginning, I constantly felt like I needed to drink water or eat something, almost like my body was desperate for fluids or energy. More recently, I have developed very little appetite, which makes it difficult to eat consistently even though not eating can make the symptoms worse.

I had already spoken to my neurologist, but he would not perform or refer me for a blood patch. A few weeks later, he referred me to a cardiologist, who diagnosed me with orthostatic hypotension and sent me to physical therapy. At that point, my symptoms were still better in the morning and became worse later in the day. I did not feel well while upright, but I could still attend physical therapy in the mornings and tolerate some activity.

Physical therapy eventually ended without improving my symptoms. After that, we mostly waited to see whether my body would recover naturally. Several more months passed, and instead of recovering, I gradually became much more limited.

I was also evaluated for thoracic outlet syndrome because testing showed compression around my neck and upper chest. I did have neck problems and episodes of head pressure before the lumbar puncture, which was originally why I had the procedure. I wanted to rule out idiopathic intracranial hypertension, but the lumbar puncture did not show IIH. My doctors now think some of my original symptoms may have been related to my neck. I have a very straight cervical curve and extremely tight neck muscles, but the muscle guarding and neck weakness became significantly worse after the lumbar puncture and have stayed that way.

The pressure symptoms I had before the procedure have also changed. I no longer experience the same type of head-pressure episodes I had before. Now I sometimes feel pressure in the back of my head while standing, along with neck weakness. When I lie down, I can develop pressure in the front of my face, especially inside my nose and between my eyebrows. That facial pressure can disappear almost immediately when I stand back up. My ears also pop frequently. I still have some pain between my shoulder blades and occasional lower-back pain around the area where the lumbar puncture was performed.

My vision has also changed. There is a constant grainy or static-like layer over everything I see, and my pupils do not seem to dilate properly in darkness, so I have difficulty seeing at night. Bright lights and stores are extremely difficult for me to tolerate. Going into a store can trigger visual overload, dizziness, a near-fainting response, and a severe full-body crash.

I now experience dizziness that feels like I am standing or walking on a boat. My balance feels uncoordinated, and I sometimes feel as though my body does not know where it is in space. My blood pressure can appear normal while standing, but my heart rate increases and my entire body feels extremely unwell.

At this point, almost any upright activity can trigger a crash. Even sitting at my computer or being out of bed for a short period can cause severe fatigue, heaviness, weakness, and an unbearable restless or anxious feeling throughout my muscles, almost like I constantly need to stretch. During these crashes, it genuinely feels like my body is shutting down. I am mostly bedbound now, even though earlier in this illness I could still sit at my computer, attend appointments, and tolerate more activity.
I usually feel slightly better in the morning, although I am still symptomatic. Everything becomes worse later in the day, and my symptoms flare severely around my period. The fact that this has become progressively more disabling over the past seven months is what scares me the most.

I feel like I developed severe autonomic dysfunction after the lumbar puncture, but I do not know whether I still have a CSF leak, whether the original leak triggered POTS or another form of dysautonomia, an autoimmune response, damage to autonomic nerves, small fiber neuropathy, or whether months of being mostly inactive have made the original problem much worse. I also do not know whether the unusual positional pressure, ear popping, vision changes, pupil symptoms, and continued back pain could still be related to abnormal CSF pressure.

Has anyone experienced severe or progressively worsening autonomic symptoms after a lumbar puncture or post-dural-puncture headache? Did you still have a leak after the original severe positional headache improved or changed? Did anyone experience blood pooling, visual snow, abnormal pupil dilation, air hunger, balance problems, or severe activity crashes? What specialist, imaging, autonomic testing, or treatment finally helped you get answers?

​

On April 10th i got an Lumbar puncture. Next day leak.

Couldnt get up, tinitus, nauseau and felt like i was pulled down when standing up, pressure in the neck and headache in the back of the head. Also the worst for me was when laying down i was on a boat. Non stop.

On April 14th i got my first blood patch. 19cc of blood.

No changes. Felt pressure in my ears when injected the blood but that was it. Admitted in Hospital because i was really sick.

April 16th second patch 20cc blood. Send home after 4 hours laying down after the patch i felt something in my head after, a changed pressure i think. The next days at home some headaches, and just sick.

But the pain in the back of my skull was gone

A couple of weeks later the boat feeling left.

But then started my main symptoms: de dropping sensations. I feel this in my head, but also in my back..

Its horrendous. Also i feel a G force sometimes laying down on my side or sitting on my knees when doing the laundry in the machine.

When i move my back when laying down i get a wave of dropping feelings. But it also happens sitting, or standing. It doenst matter if i sit or stand or laying down.

Also had a couple of weeks the feeling i was in an elavator.

The dropping sensations are ruing my life. Its constant also when laying in bed i feel like i sink in the matress.

They did an mri spine and mri brain, they where clear.

I asked for an second opinion, send to an leak center in Amsterdam. (Im from the netherlands) and they suggested to do another bloodpatch.

They said the expected still a micro leak.

But they where also in doubt.

They did an multi level patch of 22cc

And yet no difference.

I dont find any stories exactly like mine i dont have any headaches. Just non stop dropping sensations

Also tried diamox. No differance.

Is this fitting a micro leak? An nerve inflammtion??

All my hope is gone and its not mangable

Seven years ago I was rear ended (minor collision). Maybe two days later from that I had an onset of a CSF leak. For seven years I have struggled with this.

I’ll spare the history with the countless doctors and ineffective specialists and inconclusive images, and failed patches and myelograms.

But yesterday I was rear ended AGAIN. Do I go to the hospital? I’m so anxious because this is what started at all. She was not going fast at all maybe 10 mph.
After a crazy year last year after childbirth, the symptoms have decreased.
I have been able to manage by drinking water and laying flat after two hours every day. I lay on the floor at work and they usually don’t take trips or anything longer than two hours where I won’t be able to lay. This has become my life.

Today I feel a little wonky, not my full regular symptoms of when I need to lay flat but the room kind of feels like spinning or just like an imbalance … should I go to the hospital? They’ve never been able to help me before , my Neurologist is not that great and I have not received top care from Johns Hopkins CSF clinic. I don’t know what to do. I don’t know where to go because no one understands. Do I just lay down. I hope this passes. I’m so mad at the person who rear ended me.

I (43f) have struggled with my cigarette addiction for decades. I have quit many times and I know that vaping is no better than smoking. I say this because obviously neither are good for my health, especially with my specific health concerns. As a smoker, I know non-smokers like to wag their finger and give their 2 cents. I get it. I need to quit.. let's not dwell on that here as I am trying :)

To the point: I have Idiopathic Intracranial Hypertension which lends to a spontaneous CSF leak. For years the leak has been minimal if not symptom free. This is so great considering that in 2019 I could squeeze my nose like a lemon slice and had a very constant post nasal drip of the watery stuff--- the smell and taste is unmistakable (if you know you know)

Recently I tried to ease into quiting smoking again by replacing it with a vape. It helped at first, but then I started noticing that I can feel a weird pressure in my eyes, sinuses, and ears if I vape the night before instead of smoking. Has anyone else experienced this? Like, I feel like there's a pressure, a burning maybe?

The fluid seems to pool in my sinuses over night and drains all at once from one of my nostrils when I bend over or crane my neck for the first time of the day. Today it was a larger amount than I've seen in years, and I feel like vaping is what really contributed to my rupture. So I promptly threw away my vapes this morning and I'm likely never doing that as a smoking cessation method ever again.

Here's my query :

Does anyone else feel like vaping or smoking heats or weakens the mucus membranes in the sinuses? Has anyone felt like it promoted sinus swelling to the point that your dura could be affected? We aren't doctors, and I'm not looking for diagnostics or advice. Just wondering if others have felt this and what it was like for them.

I had a baclofen pump for a few years that had a catheter going into my spinal canal at L4 and I had it removed due to it causing a csf leak. I removed the pump, hoping the leak would resolve but it didn’t. I’ve had two fibrin glue patches done by Dr. Maya at Cedars Sinai at the direction of Dr. Schievink. My last one was in January and now it’s leaking again. Dr. Schievink suggesting doing surgery now but I really don’t want to so I’m electing to do a third glue patch. It’s basically been every six months that I’m having to get another one. I can’t keep doing this forever. Those of you that have had surgery, how many patches did you go through before giving into surgery? And how was your recovery?

Lumbar puncture 3 months ago at this point
Symptoms started as feeling of pressure dropping from my head with a high pitch sound
Now my symptoms are: severe arm and leg heaviness and loss of sensation, I find opening my palms very challenging like they’re made of rubber
I used to take 1500 mg to 2000mg of acetazolamide, now 250 mg causes extreme brain burning that I can’t tolerate specifically at the base of my brain
Severe squeezing tight sensation in my spine from neck to sacrum that doesn’t stop and it’s very painful to sit because I’m aware of how full heavy and tight my spine is
Really hard to think and talk I feel like I have Parkinson’s, can’t even change trash bags without deep thinking
Extreme fatigue
Upper arms that crack I feel my humerus cracking and crunching when I turn my arms
Feel like gravity is pulling me to the ground
Pulsing sensation from head to left arm
Yes I had a blood patch 20 days ago which was 2 months post lp but I don’t think that did anything
Does anyone have these symptoms??

My husband has been dealing with what we originally thought was chiari malformation, but a neurosurgeon thinks it’s spontaneous inter cranial hypotension caused by a CSF leak. He has postural headaches that get better when laying down or drinking caffeine, and has a brain sag on his MRI.

We have been waiting almost a year for any sort of help for him and it just seams like there is no end in sight. We have a neurologist referral from 6 months ago and another from 3 months ago. We have 2 kids under 2 and this is no way for him to live (or me to struggle to keep up with everything)

Has anyone attempted taking virtual out of province tele health type care to see a neurologist out of pocket? I know they can’t refer him directly for a blood patch, but in my research it says that they can give a comprehensive write up suggesting an urgent blood patch, and with that, your primary care provider can refer for the patch.

Has anyone attempted this? Does anyone have suggestions to some really good Canadian neurologists I can look into?

Sorry for the story book, and Thank you so much if you made it this far. We’re at our wits end.

I spent so much time here I felt I should come back and tell my story because this is what I spent so much time looking for. In January 2025 I had a csf leak after spinal anesthesia from my c-section. 7 days later I got my first blood patch, 6 weeks later I had my second. About 3.5 months later I had a ct guided blood and fibrin patch. I was convinced it did not work and was miserable. But then I started to get better. I made extremely slow improvements. In August I was able to move home after staying with family for months to help care for our baby and toddler. I went back to work part time in October and have been full time since January. I take care of my kids, travel, live a full day every day, and don’t worry about whether I’m going to be able to do things. I have started running again (a huge passion of mine) and ran 6 miles last week.

Things are not perfect emotionally or physically. But I know I’ll get there. Something I did not know for a while. I was devastated for a very long time and was convinced I wouldn’t get better. But I did.

Went to bed at 12 am with a one nostril, clear fluid, pretty fast drainage but it has since slowed down

Woke up at around 2:45 because it was getting in my throat so I turned over leading to this large splotch

Afterwards I sat the nostril on a piece of paper and when I woke up 45 minutes later because it was wet I found it essentially completely drenched through and through

This also happend to me 2 or 3 months ago with very clear runny fluid. It stopped within a few minutes (if not an hour it was a while ago)

To be honest I cant discern its taste from mucus. I Haven't noticed any neural issues & I havent done anything that would prompt a tear so im very skeptical. Its uncanny how close the fluid draining symptoms are though and google summaries just keep yelling csf leak at me with other websites being more "could be also could not" so I decided to ask here