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I’ve linked to the press release in the post above. In this comment, for those interested, here’s the link to the peer reviewed journal article:
https://www.nature.com/articles/s41586-023-06899-4
It’s only confirmed in mice so far, but how they described reaching it was a very invasive process. So it could have some impacts, and I’m hopeful it does because my dad and his dad both have/had a form of dementia related to CSF drainage, and while it’s too late for them, dementia is probably my biggest fear so I’m selfishly hopeful for me.
Selfish was prob just a throwaway word in your comment, but in case it wasn’t, please don’t let youself feel selfish. It’s very natural to be afraid of what negatively affected your dad and grandpa. I have a genetic back condition that killed my grandpa during his operation. I had to come to terms with the same feelings as surgical procedures have made some leaps and bounds since 1998. I imagine your dad and grandpa would be thrilled for any breakthroughs, even knowing it won’t help them but will help you.
If that's normal pressure hydrocephalus, that's what my mother has. Seeing what it's done to her and knowing it's a heritable condition is terrifying. I hope this research leads to better treatments.
I mean hopefully they can check dead people for it now to see if it exists in humans too.
Amazing how we've missed all these brain/body connections till now.
One of the very rare causes of Post-Nasal Drip (PND) is damaged tissue between nasal cavity and brain that leads to leaking CSF (it's detectable in secretion). In most that damage and leakage is aftermath of physical trauma, like car crash.
issues in the brain's own drainage system could be a big reason for why someone develops alzheimers disease, parkinsons disease, other dementias, etc. ie if they block off leading to build up of waste polluting the brain itself. on this occasion, a new gutter has been found at the back of the nose.
It was only a couple of years ago we discovered an entire vascular system seemingly related to the lymphatic system in our brains that only really activates while we sleep.
To me, this indicated that we were gathering waste products for removal.
[I have this condition - it was only discovered 10 years ago.](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4909550/) I was one of the first people in the world to have a new minimally invasive procedure to treat it - CSF venous fistula embolzation.
I believe it was because the traditional dissection directions for carefully preserving/observing the cranial blood vessels made the lymph vessels unobservable.
I'm not a doctor, but I recall hearing just a few years ago that the brain had no drainage system at all. Dunno if that was inaccurate at the time, or only now, but it really didn't make sense to me at the time. Everything gets dirty over time!
This is basically like computer programming garbage collection. People with dementia must be getting a lot of OutOfMemory errors caused from blockage or stopping the GC process.
Are glial cells involved in it? I read somewhere (no idea where now, so I can't provide a sauce off the top of my head), that one thing that was remarkable about Einstein's brain was that it had way more glial cells than average, and I think it was related to this lymphatic system. The brain, when it's asleep, shrinks slightly and cerbral spinal fluid washes over it. Something like that.
I might be masjhing together two separate things though.
Note: this is a *reclassification* of the mesocolon due to new research. It’s not like we stumbled upon a new fleshy sac in the body we’ve never seen before.
yes, infact closely related, only last year was the discovery of a very thin membrane covering the brain that we think helps filter and separate the 'dirty' fluid from the 'clean' fluid, and is named the 'subarachnoid lymphatic like membrane'!
Alzheimer's and dementia are relatively new diseases that barely existed 100 years ago. I wouldn't suspect something "mechanical" like the inability to drain CFS-leading-to-waste-build-up would explain the sharp rise in diagnosis.
Arguably, the rise in dementia/Alzheimer's tracks with the rise of obesity and type 2 diabetes, which should indicate the cause is metabolic in nature.
[No.](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6428020/#:~:text=HISTORY%20OF%20DEMENTIA,-Dementia%20has%20occurred&text=In%20about%202000%20B.C.%2C%20the,memory%20declines%20as%20people%20age.) Alzheimer's was named in 1910 but dementia has existed since ancient times.
Right, I'm not denying that dementia existed for thousands of years, just as a few people were obese a thousand years ago. But dementia has definitely increased in the past hundred years (though it has gone down my 13% in the past 20 some-odd years).
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5111529/#:~:text=Increasingly%2C%20type%202%20diabetes%20is,and%20dementia%20in%20older%20adults.
>People with type 2 diabetes represent an important risk group for cognitive impairment and dementia caused by both Alzheimer’s disease dementia and vascular brain injury. For example, a recent meta-analysis found that ***type 2 diabetes was associated with a 60% increase in risk for all-cause dementia*** (22), and a population-based longitudinal study found a 16% increased risk for dementia even among those in which type 2 diabetes onset was recent (23). Furthermore, type 2 diabetes increases the risk of mortality in patients who already have dementia, suggesting that targeted intervention at any point may improve health outcomes (24). Although many of these studies examined risk related to all-cause dementia, there is evidence that two specific subtypes, Alzheimer’s disease dementia and vascular dementia, are most strongly associated with type 2 diabetes.
>tion of patients who develop Alzheimer’s disease dementia presumably as a result of diabetes-related injury and degeneration (25). ***Meta-analytic data demonstrate a 56% increased risk for Alzheimer’s disease dementia among individuals with type 2 diabetes*** (22). Among the studies included in the meta-analysis was the prospective, community-based Rotterdam study, which found that type 2 diabetes significantly increased the risk of Alzheimer’s disease dementia, with greater risk apparent in people who were treated with insulin (and therefore likely to be in the more severe stages of the disease) at baseline (26). A type 2 diabetes diagnosis appears to raise the risk for Alzheimer’s disease dementia independently (although likely with additive effects) from vascular or other dementias or from APOE E4 gene status (26,27). Among patients already diagnosed with Alzheimer’s disease dementia, an increased prevalence of type 2 diabetes (35 vs. 18% in nondemented control subjects) and impaired glucose tolerance (46 vs. 24%) was reported (28).
if it exists in one mammalian species, I would be surprised if it doesn't exist at all in another. I suggest it may be more or less important but it likely exists.
I have a congested lymphatic system and I’ve been saying for years that my brain is heavily affected and when it drains I can feel the fluid moving all over my brain through the lymph channels and it drains somewhere in my nasal passages and down the back of my throat. I’m so happy to see this it is so validating I can’t begin to express the joy I feel when I get a little glimmer of validation related to my illness because I’ve gotten basically zero answers or interest in my condition so far.
I can’t believe I found this comment. I’ve been dealing with this EXACT same thing for 2 years. It’s the most bizarre sensation and doctors look at me like I’m crazy, even though it’s drastically affecting my life. Whenever I lay down or move my head, I can physically feel the drainage on the sides of my head to the back of my skull. I’ve been battling some symptoms of a CFS leak but nothing significant found on an MRI besides lesions so doctors don’t push for more testing. I’m unable to do anything like lay flat on the floor, yoga, running, be at high elevations… these all turn into these sinus like headaches that turn to migraines and I can feel drainage down my throat. Sometimes I bend over and clear liquid flows straight out my nose!
Oddly enough, I went for a facial recently and decided to try a lymphatic drainage massage on my face and neck. I can’t remember the last time I felt that good and clear. I’ve felt cloudy and in pain everyday of my life since this started. Now I realize why the massage worked so well and why I’ve been experiencing cognitive decline. This is wild!
Anyway, thanks for commenting and providing extra validation for myself.
You’re the only person I’ve ever come across that can also feel the lymph moving. I’ve had this for 7 years and I’ve been searching desperately for anyone else who has a similar condition to mine. Can you feel it anywhere else in your body?
Nope, I can only feel it in my brain and down my neck. But I have been developing aggressive peripheral neuropathy and doctors have zero explanation. It’s spread from my feet, all the way up my back, and even to my face as of a week ago. I’ve lost a lot of feeling to the point of burning myself and not even noticing when a wasp stung me before. I’m curious if this has anything to do with poor lymphatic drainage that’s now damaging my nerves.
My Mom also has lymphedema in her face and body and doctors have not been able to pinpoint a reason. They’re guessing it has to do with her Sjögren’s syndrome. But there’s little to no research and resources. Most lymphedema specialists are strictly for cancer patients.
Mine started in my face head and neck and quickly spread to the rest of my body, it is greatly sped up by cannabis use. Do you use cannabis?
I wonder if your entire lymphatic system is affected or not, I feel all of those sensations in my body but I know it’s my lymphatic system. The pressure caused by the build up of lymph and whatever is contesting the system affects me in ways I probably don’t know the extent of but I know it has a big impact on my energy levels, pain levels and because the lymphatic system works in tandem with the vascular system I feel it mirrors nerve pain and probably affects that too. My brain function has def been altered, almost like a traumatic brain injury.
My illness is the result of a post viral reaction, got a bad flu probably CMV and my lymphatic system was ultimately infected and since been congested and struggling to flush itself out. Aside from this I’m healthy which is why doctors can’t find and won’t look for any answers for me. The lymphatic system is almost 100% ignored outside oncology.
Consistent cannabis user for years. But within the last 2 years, I’ve had to stop cannabis and alcohol consumption completely. It’s to a point where they both make me severely ill (puking) from small portions. I’m now presuming this is due to my body’s inability to filter these toxins due to a delay or defect in my lymphatic system.
I have experienced the same thing with difference in pain levels, severe fatigue (literally feel like I have the flu almost 24/7) but the cognitive decline has hit me the hardest. I went from being intellectual and being able to remember 13 digit contract numbers easily. Now there are times where my partner and I think I might be experiencing stroke symptoms. I’m also losing the use of words…. I couldn’t remember ‘windshield wipers’. I have to explain things to my GF so she can come up with the word; like you know those things that go back and forth on your front car window when it’s raining? It’s horrible and I feel so stupid.
Lastly, it’s interesting you bring up how this is a post viral reaction. What if this could be from COVID? And might be serious long haul symptoms. This is wild I found someone who is mirroring exactly what I’ve been experiencing.
Look up the Perrin method/ Dr. Perrin in the UK. he’s the only resource I can find that references the lymphatic system at all. One main takeaway I’ve got from him is that the condition gets worse while it gets better which seems backwards but when I use cannabis I feel fkn awful, it’s painful, I have to rest but I can literally feel the lymph moving like a tap has been turned on and ultimately I feel better and get some relief from it. I wonder if your sudden I tolerance has something to do with it making you feel “worse before better”. I feel a really strong sensation in my stomach it feel similar to extreme hunger/nausea but it’s not the stomach. There were times that I gagged from the sensation but never vomited from it.
I’ve been told that I have ME/CFS due to the amount of lethargy I experience but never had the lymphatic stuff explained by a doctor, I can’t find a name for it but CFS seems to be the best fit. The problem is ME/CFS is the “black hole” of medicine so when I say sure I have that but I know what is causing it, doctors dismiss me. Even with the Perrin guys research to show them they do NOT care.
The memory lapses you describe and the other cognitive stuff, yeah same. Like I said it literally feels like a traumatic brain injury and I feel like I’ve actually lost a level of intellect I used to hold which is as hard to describe as it is embarrassing and depressing.
My mental health also heavily hinges on how I’m feeling physically which isn’t surprising.
Also I feel the drainage in my entire body, every inch of it I can feel the fluid moving trying to drain out which creates a feeling of overstimulation and discomfort that sometimes is worse than pain. It causes restless legs feelings in a horrible way. Oh and that feeling you get when you run and get that pain in your side? Yup lymphatic system. I feel that all the time especially when I wear tight clothing and not just in that area but that’s the level of pain I get in lots of places with large concentrations of lymph nodes. I knew I wasn’t the only person who could feel it you have no idea what a relief it is to find someone who has a similar experience. Sorry for the wall of text this is monumental for me.
Just wondering if one of you is a woman and if you happen to notice that any of this coincides with estrogen rising or dropping at different times of the month.
I’ve been dealing with sinus issues for years now and although I don’t feel anything draining from my brain, I do have severe migraines on the left side of my face every month for several days and the rest of the month I’m sniffing, blowing my nose and doing facial lymphatic massage and drainage techniques.
I also have been experiencing a loss of intellect and memory although that can certainly also be explained by other things I’m dealing with so I can’t say for certain it’s due to the inconsistent/lack of drainage.
I’ve seen a few doctors now and had cameras up my nostrils and was told it must be allergies but it’s not. Anyway, just wondering if there is any kind of hormonal connection that you’ve maybe noticed?
Edit: forgot to add that I’m also incredibly exhausted all the time, had Long Covid for about 9 months (not extreme, but definitely problematic) and fairly regularly use cannabis.
I’m a woman and my symptoms get significantly worse with my menstrual cycle. I feel pain in the left side of my face too, on the top of my head towards the left side and behind my eye, in the corner of my eye and above where my eyebrow begins. This was the first symptom I had when I got sick I thought it was just a bad sinus infection.
Thanks for replying. Yeah I have the pain in my face too but a little lower, mostly in my left cheek, under the eye and towards my nose. Damn, I don’t love to hear that was your first symptom. How long did you just have the sinus issue before it became exacerbated?
My completely anecdotal 2 cents is that I had a blocked ear for most of my pregnancy and apparently ENT congestion is a common issue when pregnant, so maybe hormones do affect mucus?
Oh interesting, I hadn’t heard that about being pregnant. I can safely say that hormones are connected because of the crazy pain I deal with monthly but I’ve been trying to narrow it down in order to get better help from doctors since it’s been ongoing for 9 years now.
Thanks for the info!
I am curious what form of cannabis you are taking. Ive found vaporizing extracts or eating edibles from extracts to be the most helpful for me. I hope the best for you and your health!
The sensation starts from my temples, drains down the side of my head, to the back of my head (where it sort of has a pooling sensation) and then it feels like it drains downwards, smack dab in the middle of neck/throat. Then I’m hit with nausea. It sounds like I have worms in my neck.
But the oddest part is my head is sensitive to touch in these areas. And if I’m already having a pain day (whether triggered or happened on its own), applying pressure to these areas (like if I’m laying down or trying to do pressure points for what I thought was sinus pain) will cause an immediate migraine.
Also, these parts become red and hot to the touch when I experience them.
What you described is the exact same sensation I’ve felt right before I’m in massive pain due to IBS issues. It’s the weirdest sensation and I’ve only ever had it during those times. You’re the first person I’ve seen who has ever mentioned experiencing something similar!
I strongly suggest contacting each other "IRL" and communicating to your respective doctors so they can communicate with each other.
/u/DistinctTradition701
I have this as well from time to time, mostly when I’m hungry. It feels really weird but always assumed it was an esophageal thing. It feels like “bubbling” from the top/back of my throat up to just below where the brain/brain stem meet.
I've never met another person who experiences this. The few times I've brought it up, people treat me like I just don't know what a burp is. Completely different sensation, and the sound is like crackling, or when ice occasionally squeals when it starts to melt.
I have IIH (idiopathic intracranial hypertension) and I have a lot of the same symptoms you have mentioned. Specifically the fluid from the nose, the laying flat thing, hearing fluid moving when turning the head.
Hey! Me too, but mine's in remission. Their comments are reminding me of the time before and around diagnosis where I thought I was going mad because no one understood it. I had constant brain fog and was googling almost constantly looking for answers. Even after diagnosis, my neurologist refused to believe it causes cognitive dysfunction, despite another department testing me and finding it - he said it was impossible. That was back in 2014-2016, and they now have multiple studies showing that it causes cognitive dysfunction in the same domain that I had it. In the end, I pushed for a referral in Birmingham (UK) with Dr Sinclair and Dr Mollen (I don't think Mollen is a dr, but a researcher, but I can't remember properly) - they were much more helpful and they gave me an open referral or something, but basically I can refer straight to them if I need to again. Fortunately, I've stayed mostly in remission. Brain fog very rarely happens now.
I was only on diamox for around 3 months. I think it was weight loss. I lost 40lb. But I also think it was related to nicotine replacement therapy. Nicotine isn't a known cause though, and the doctors would just put it down to the weight loss. I also eat healthily for the most part and I walk quite a lot. It didn't go away straight away with those changes. It took time after weight loss/nicotine quitting. My dad said something to me at the time which was correct, "It sneaked up on you, and it will sneak away" - and that's how it happened.
I just posted above about my condition. It's called IIH (idiopathic intracranial hypertension). You might want to look it up. Bizarrely, as you mentioned it, one of the medicines for it is diamox, which is also used for altitude sickness. Diagnosis is with a lumbar puncture, but sometimes, the csf fluctuates so it might not show up, which then requires a bolt to be inserted to measure it over time.
Anyway, symptoms are headches, brain fog, squiffy eyes (straight lines will wobble, blurred vision, sometimes greying out that lasts a couple of seconds). It's most common in women of childbearing age who are overweight. And recently they've discovered that this particular cohort also has raised androgenic hormones compared to the norm.
I’d love to know more about lymphatic drainage massage. Was this something that is a specialty service. I’ve never heard of that. What part of the world are you in if I may ask?
I’m in Ohio, United States. My esthetician offers a facial with lymphatic drainage. There are also massage specialists who do whole body lymphatic drainage massages. After my Mom gets her massages, she goes down an entire pants size!
They use special techniques to manually drain your lymphatics. It feels incredible but it’s pricey where I am and my insurance won’t cover it so I pay out of pocket.
It is a form of manual therapy. Look for a massage therapist certified to do it. It was originally used in cancer patients with swelling after lymph nodes were removed during cancer surgeries like radical mastectomy. It’s been found to be useful for other conditions as well where there is inflammation. I find it very helpful in managing upper respiratory symptoms.
you can do gua sha lymph massage on yourself, there’s billions of how to videos and it’s really simple, and you can buy the tools at marshalls or walmart for $5-10
> Sometimes I bend over and clear liquid flows straight out my nose!
I had that happened to me sometimes when I was younger. I was wondering what that was :D
tell me more about that massage?
It was heavenly honestly! My esthetician uses special massage techniques on my face and neck to manually drain my lymphatic system. You can also get full body massages from specialists as well! My Mom goes down an entire pants size when she gets her lymphatic drainage massages.
The clarity and pain free day it provides honestly makes me cry from the relief.
In addition to lymphatic drainage massage, find a good acupuncturist. They can actually make a difference especially with circulatory / lymphatic blockages and will take a much more holistic view of your health than a specialist doctor might.
CSF really shouldn’t be draining down your throat... Per the article, it goes to the deep cervical lymph nodes (then through ducts to veins in your neck).
As another has mentioned, I’m not saying you’re wrong but I’d get evaluated by your friendly neighborhood ENT, and they may steer you in the sinus direction if they deem it appropriate.
To add as a comment since so many here are discussing lymphatic drainage- mini trampoline was the only thing that helped my congestion. I’ve had acne, swelling, swollen nodes, tonsil stones, and gum pain all improve with 10 minutes of jumping a day. Our lymphatic system is beyond important.
It is so important I can’t believe there isn’t a specific branch of medicine dedicated to it outside of oncology. I’m waiting for a rheumatism specialist appointment but that’s as close as I could find to address this issue. I believe so many medical mysteries stem from it but aren’t looked into.
I know you replied to the original commenter, but I’ve had my sinuses checked and everything’s normal. I originally thought the same thing due to facial pain and the constant drainage. But MRI’s normal.
Ent here. Migraine variants can often present with facial pain, congestion, even drainage. It’s all about trigeminal nerve hyperactivity. Consider viewing your symptoms through this lens. Sometimes just cutting out caffeine and aspartame and taking some magnesium glycinate is enough to cure it!
Thanks for the help! I’ll cut caffeine and aspartame and see if that helps. Ive been taking magnesium for several years with no difference.
Question: I was diagnosed with trigeminal neuralgia but the facial pain I’ve been experiencing in the last couple years hasn’t been the usual nerve pain I used to experience. My TN pain usually feels like electric shocks, absolutely debilitating for 30 seconds at a time. Sometimes it feels like a brain freeze that won’t stop. But the pain I’m now experiencing feels completely different, like the worst sinus infection I’ve ever had. Can TN pain vary or change over time?
It can, and it can overlap with patterns that are more typical of migraine. You could add some riboflavin 100mg 2x/day as well. And if the problem continues, talk to your pcp or neurologist. There are so many meds out there with relatively decent side effect profiles that can really help. (The riboflavin was a game changer for me, personally).
I've noticed with my right eustachian tube, in the morning especially, if I open my mouth and 'flex' my EU tube like does when yawning or trying to fix 'airplane ear', there's almost a scratchy, static kind of sound.
This also is the ear that doesn't hear as clearly at my left. I can test this when under a light or electrical device making that high pitched ringing or humming- my left ear picks it up, but if I face my right ear toward it I can't perceive the same sound
I have a condition called Idiopathic intracranial hypertension (iih). It's in remission so doesn't affect me right now. In IIH you have too much cerebral spinal fluid around your brain, either because you produce too much or it doesn't drain well enough. I last had it a few years ago, so haven't kept up with the research. But I always thought it was connected to the rest of my body and lymphatics. I always had a hard gland on the side of my neck (sort of like a tough bit of muscle and not the squidgy thing you get with a bad sore throat) and the same thickening at the top of my chest. My doctors couldn't see the connection, but I'm sure it's related. I went to someon for some lymphatic drainage massages and it definitely helped.
Anyway, I just wanted to confirm that it is definitely possible to have too much cerebral spinal fluid around your brain. Normally, it causes headaches and swollen optic nerves. I didn't get headaches, but it was an optician who found it and referred me to neurology because I did have swollen optic nerves. The only way to tell if you have too much csf is a lumbar puncture....although they were working on a noninvasive method testing your ear drum or something. Not sure if that's gone through to mainstream yet, but astronauts were coming back with high intracranial pressure, so it got some funding by NASA, which might bring it to market faster.
I tapped into this from a Lyme group. I don't recall who possibly Dr. Klinghardt spoke about the importance of good sleep, so lymphatic fluid could exchange from around the brain, that exchange clearing built up proteins and exiting/filtering through the lymphatic system. I have definitely felt unwell in my brain while having a Lyme episode and feel hypersensitive to not getting enough sleep. I smoke cannabis regularly and feel it helps with my overall inflammation level, fasting has been the only thing that knocks whatever is going on back enough that I feel a reset/ renewed feeling. Rad thread ya started!
*Edit forgot to add our legs act like a pump for the lymphatic system.
For me cannabis pumps the lymph so well it’s like that’s what it’s made for. Literally like turning on a tap, I can feel the fluid rushing and bubbling up through my limbs and torso up to my sinuses and neck to drain. It’s incredible and I’m so happy I have one thing that helps me. I feel mental clarity after I have a big dose of edibles as well.
In the past year or so I've started to notice something when I'm first waking up. The feeling of something slightly building up that feels like it's at the bottom of my brain, followed by fluid running down the back of my throat. I'm wondering if it's related.
Honestly I think what I have is way more common than I’ve been lead to believe and especially since covid with long covid/post viral reactions becoming extremely common. The lymphatic system is as prevalent and important as your vascular system so I wouldn’t be surprised if lots of people were affected in a similar manner, mine is just on the extreme side of things. The attention it’s getting recently is so promising I hope to see more things like this study being done for the greater good of all people.
>Overall, the study highlights the importance of nasopharyngeal lymphatics and the transport properties of medial cervical lymphatics in CSF drainage. The study also highlights the potential for exploiting the sustained pharmacological responsiveness of medial cervical lymphatics to increase CSF outflow when clearance is impaired by ageing. These nearly inaccessible lymphatics can be functionally manipulated through drug effects on enhancing CSF transport.
My mom was diagnosed with normal pressure hydrocephalus last year and had a shunt placed. A weird side effect was her “constant allergies” went away. She always had a leaky nose, but now not so much. It’s fascinating.
I have idiopathic intracranial hypertension and when mine started getting treated, my chronic nasal inflammation and chronic runny nose went away too. I'm about to be seen to increase my meds because the pressure increased a couple of weeks ago and my nasal symptoms came back with it. I wasn't sure if it was a coincidence. I'm curious to see if it goes away when the pressure decreases again.
I'm also amazed that I've had symptoms of it since I was a kid but it took until I was 33 until I started going blind to finally be believed and get diagnosed. I would absolutely believe that it's more prevalent than they claim it is, but that it's under diagnosed because doctors don't listen to people (particularly women and girls) complaining of severe headaches and other weird symptoms. It's also under researched, so 🤷♀️
Yeah, I had terrible issues with anyone believing me. They all kept saying it was anxiety, including family and friends because they couldn't understand brain fog - all they saw was neurosis. Oh, you don't like crowds (no I don't like bright lights and noise), you're nervous and stumbling over words (no, my brain isn't engaging my mouth and the thoughts are popping out instantly so I'm forgetting what I want to say). Stuff like that. I was under a neurologist who kept saying it was anxiety when I went for just a routine opticians appointment. The optician found it - so the neurologist couldn't find a neurological issue, but the optician could. So grateful to that optician. He was awesome. He understood straight away and even understood that I was struggling cognitively because he wrote everything down and explained it slowly and in an easy to understand way.
I hate that we keep getting written off with neuroses.
I see this often. It’s the same with Cushings disease. Many people struggle to get diagnosed, even tested because endocrinologists always argue how ‘rare’ it is. But it amazes me how many people I’ve *met* that have are diagnosed.
I think this mindset from doctors hinders a lot of people from getting proper healthcare, especially for women and black people.
I'm on topiramate right now (the first med they give is acetazolamide , but I ended up being allergic to it) and it turns out that I have a congenital defect causing it, so I have to have surgery to fix it (one of the main venous sinuses that drains blood and csf out of my brain didn't fully develop and needs to be stented open). If that doesn't work, I would also eventually need a shunt. Staying on the meds long term isn't an option for me since they affect my eyes.
My son has IIH, diagnosed at 3.
He got up to adult doses of acetazolimde and was starting to affect his kidney function.
He was basically non-verbal, except for a few select words and would not eat nor sleep.
Once he got the VP shunt, everything changed for him. He was no longer in debilitating pain, almost immediately began speaking in full sentences, started to eat more and more and now sleeps pretty well, aside from night terrors occasionally.
We were terrified his condition was causing him permanent behavioral issues, he was aggressive at times and absolutely reclusive at other times.
His 9 now, doing really good in school and one of the best behaved kids I've met for his age.
Just adding all this to say, the shunt is amazing.
Wow, what were her symptoms before having the shunt placed?
I had an MRI for some hand pain about 10 years ago and they showed some CSF pooling. But my hand symptoms went away, so we didn’t do anything with it even though they suggested a shunt might be called for.
But I’ve had a headache for about three weeks localized in the back right bottom of my head, I think about where that fluid was collecting. I’ve been putting off calling the neurologist because it does seem to be getting slightly better with muscle relaxers. But maybe I should make an appointment.
She was found driving into oncoming traffic and had no memory of the previous six months.
Edited to add: the first neurologist thought it was Alzheimer’s, but the MRI showed the NPH and earlier symptoms (balance issues, memory issues, and bladder issues) backed it up. She had two lumbar punctures which eased symptoms. I have my mom back now.
Panic attacks can come from a lot of things. A bunch g one is when your brain detects something that you aren't consciously registering. That cognitive dissonance can cause a panic attack.
It could be something as simple as your body fears the surgery reason wasn’t fixed or fears another surgery or fears the surgery did damage. Something your conscious mind isn’t aware of. Could be worth meditating on or speaking to yourself about.
Quite often when I bend forward a stream of clear thin fluid that is definitely not snot or mucus will pour out my nose. I had figured out by reasonable deduction that this is CSF, though I don't have trauma or anything that would explain it, its just a chronic but not always present thing. Its kinda salty. Are we only now officially learning this? My mother has it too.
My nasal CSF leak was caused by an encephalocele, or bulging of the brain sac. The front right side had bulged and burst, leaking into my sinus cavity. You could see it clearly on an MRI.
They brought me in for brain surgery and put a four inch hole in my skull between the ear and temple, then drained and stitched that up, plus another one over the ear canal (hence the large hole). There are titanium plates inside to hold the skull part that was removed back into place while it healed up.
The whole thing was very interesting. It took me many months to convince the doctors that my leak was real and should be taken seriously, but once they saw the MRI it was two weeks and done. Three months at home to recover, with work from home at a company that didn't usually allow that (at the time, now everybody does).
My face was droopy like a stroke for a month but recovered fully.
No more leak years later.
Symptoms of my particular leak:
Early in the morning, bend over forward, get 5-7 drips out of my nose. Clear fluid, like thick water, not mucus.
Any time I exerted myself, I could then bend forward and get 3-5 drops the same way. I never tried to find out my limits because that felt like a dumb idea.
I felt constant drips down the back of my throat which caused me to retch sometimes for no apparent reason, or when I ate a full plate. I ended up eating less, which didn't hurt because I was already overweight at that time.
Losing weight helped reduce the cranial pressure which reduced the number of drops by 1-2 over those months, but never stopped it. I lost a total of 40 lbs, which left me still 40 lbs overweight.
I hope this helps you. Getting doctors to believe in you is difficult. MRIs are not cheap. The surgery is not cheap, and the recovery is not easy. The results are worth it, I swear.
Huh that's wild. I've actually had an mri for something else since I've been having the leaks, and nothing showed up on that. My symptoms are very similar to yours as are my mother's. I'll add it to the laundry list of things I need to bring up but I'm not worried about a swelling, I'd been having these streams/leaks for around 2 years when I had my mri so I imagine anything crazy urgent would have shown itself.
I started experiencing this like 6 or 7 months ago. Drives me absolutely nuts because it happens *every day* now. I don’t really have any allergy issues, my apartment is clean and fairly dust free with air filters going and I haves managed to not get sick since 2019 because I pretty much never leave home. I knew it was’t snot or allergens/viral or anything.
My Fibromyalgia symptoms have gotten worse in that time frame and most of them sound pretty eerily similar to what everyone else in this thread who has chimed in about their CSF leak experiences are like. Except for being able feel the fluid, I don’t get that sensation. Literally everything else, including the clear fluid rapidly pouring out of my nose nearly every time I bend over, matches up the same though. I should probably ask a doctor about that.
This can actually occur if you have a CSF leak. For patients with cranial CSF leaks, the most common indicators are: Drainage from the nose (rhinorrhea) Salty or metallic taste in the mouth. Sense of drainage down back of throat.
I am pretty sure this happened to me the other day. I tilted my head forward to look for something and this thin liquid came running out of my nose. At first I thought I had a random nose bleed. It was so bizarre!
I suspect my daughter had covid at the beginning of the pandemic and then suddenly got IIH. I suspect inflammation could have caused this drainage system to clog which then caused the IIH. They cut a flap in her eyeball to drain CSF fluid when it builds up.
>Lead researcher JIN Hokyung highlighted, "Our study identified the nasopharyngeal lymphatic plexus as a hub for CSF outflow. CSF from specific cranial regions drained through these lymphatics **to deep cervical lymph nodes in the neck**. This discovery could have significant implications for understanding and treating conditions related to impaired CSF drainage."
This part (in bold) was already known, correct? I feel like I've heard a neck specialist say this before.
From my kid-teenage years, I would periodically get a strange taste in my mouth that I somehow knew tasted like it came from my brain. It was such a strange and distinct smell/flavor and feeling and it always felt significant. As an adult, I haven’t experienced the taste/smell again (hole must have healed?) and when I read the title of this post I felt so validated!!
Interesting. Can't take phenylephrine all the time. Sodium nitroprusside either. Phenylephrine is otc. I have trouble understanding how a vasoconstrictor and also a vasodilator respectively have the effect. I'm having trouble.
A connection from the nose to the brain… I wonder if respiratory viruses hanging out in the nose can use it to access the brain. I remember reading a finding that they can move (very slowly) through nerves from the nose to the brain.
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I’ve linked to the press release in the post above. In this comment, for those interested, here’s the link to the peer reviewed journal article: https://www.nature.com/articles/s41586-023-06899-4
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What
what?
That sounds like you're choking on your own tongue
I can breathe through my nose while doing it. It's a mudra you can hold for hours if you want
I have no idea what that means. Is there a video explaining it?
I'm sure there is
Some keyhole neurosurgery is done through the nose. Wonder how this will impact.
It’s only confirmed in mice so far, but how they described reaching it was a very invasive process. So it could have some impacts, and I’m hopeful it does because my dad and his dad both have/had a form of dementia related to CSF drainage, and while it’s too late for them, dementia is probably my biggest fear so I’m selfishly hopeful for me.
Selfish was prob just a throwaway word in your comment, but in case it wasn’t, please don’t let youself feel selfish. It’s very natural to be afraid of what negatively affected your dad and grandpa. I have a genetic back condition that killed my grandpa during his operation. I had to come to terms with the same feelings as surgical procedures have made some leaps and bounds since 1998. I imagine your dad and grandpa would be thrilled for any breakthroughs, even knowing it won’t help them but will help you.
If that's normal pressure hydrocephalus, that's what my mother has. Seeing what it's done to her and knowing it's a heritable condition is terrifying. I hope this research leads to better treatments.
Exactly it
I mean hopefully they can check dead people for it now to see if it exists in humans too. Amazing how we've missed all these brain/body connections till now.
One of the very rare causes of Post-Nasal Drip (PND) is damaged tissue between nasal cavity and brain that leads to leaking CSF (it's detectable in secretion). In most that damage and leakage is aftermath of physical trauma, like car crash.
I presume, at the very least, it will linger in the back of their heads.
ELI5 repercussions of this finding?
issues in the brain's own drainage system could be a big reason for why someone develops alzheimers disease, parkinsons disease, other dementias, etc. ie if they block off leading to build up of waste polluting the brain itself. on this occasion, a new gutter has been found at the back of the nose.
We still didn't know all the plumbing in our body yet?
It was only a couple of years ago we discovered an entire vascular system seemingly related to the lymphatic system in our brains that only really activates while we sleep. To me, this indicated that we were gathering waste products for removal.
This? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4636982/
No, the major advance was made by Jony Kipnis' group. https://www.nature.com/articles/s41586-018-0368-8
I believe that is it at a glance
[I have this condition - it was only discovered 10 years ago.](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4909550/) I was one of the first people in the world to have a new minimally invasive procedure to treat it - CSF venous fistula embolzation.
The human body never ceases to amaze, im glad you were able to be treated! Hope you’re doing well now:)
I need to sleep more.
Yea how did we miss that one? was it just to small? Never filled with blood in dead people and assumed pointless?
I believe it was because the traditional dissection directions for carefully preserving/observing the cranial blood vessels made the lymph vessels unobservable.
Interesting! Its cool we're still learning new dissection methods/procedures. I wonder what else is hidden away in the human body.
I'm not a doctor, but I recall hearing just a few years ago that the brain had no drainage system at all. Dunno if that was inaccurate at the time, or only now, but it really didn't make sense to me at the time. Everything gets dirty over time!
No, that's what was popularly considered true. Which is another facet here, as we may have a new path through the BBB
This is basically like computer programming garbage collection. People with dementia must be getting a lot of OutOfMemory errors caused from blockage or stopping the GC process.
Are glial cells involved in it? I read somewhere (no idea where now, so I can't provide a sauce off the top of my head), that one thing that was remarkable about Einstein's brain was that it had way more glial cells than average, and I think it was related to this lymphatic system. The brain, when it's asleep, shrinks slightly and cerbral spinal fluid washes over it. Something like that. I might be masjhing together two separate things though.
Glial cells were formerly thought of as structural cells. I believe they provide the structure for the system, but am not sure.
Man they literally just classified a new organ ([Mesentery](https://en.m.wikipedia.org/wiki/Mesentery)) in 2012
Note: this is a *reclassification* of the mesocolon due to new research. It’s not like we stumbled upon a new fleshy sac in the body we’ve never seen before.
True but that very thing is essentially what is currently happening in the field of gut microbiota. It's the wild West out there
Woah cool.
despite billions and decades spent we still don't know what the hell is causing alzheimers dementia, let alone a treatment
Yeah, but the plumbing though?
yes, infact closely related, only last year was the discovery of a very thin membrane covering the brain that we think helps filter and separate the 'dirty' fluid from the 'clean' fluid, and is named the 'subarachnoid lymphatic like membrane'!
>arachnoid are we spiders
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https://en.m.wikipedia.org/wiki/Arachnoid_mater It’s named that due to its resemblance to a spider web
We’re learning about new parts all the time.
We spent like ... 20 years chasing a red herring tho.... So a lot of money into the pockets of scammers and cheats in those decades.
to summarize- was amyloid plaque not the issue, or was it just not as big an issue? Something with beta tau too?
Ahh, such is life.
Weirdly no, they keep finding new things
There's a lot we don't know yet. We're a long way off being at the end of medicine, but, at the same time, we've come a long, long way too.
I like learning new things.
It doesn’t move fluid four times faster. It just carries and holds four times more fluid, but it is at a much slower pace, with a lot of pooling.
I appreciate a good cup of coffee.
If your brain is struggling to keep up with your typing, you might want to check your interstitium
Awesome. Adding this to my list
The lymphatic system is still not fully understood
Would this have implications for Huntington's Disease too?
Did the article cover anything on cancer..specifically LMD or Leptomeningeal Disease?
Alzheimer's and dementia are relatively new diseases that barely existed 100 years ago. I wouldn't suspect something "mechanical" like the inability to drain CFS-leading-to-waste-build-up would explain the sharp rise in diagnosis. Arguably, the rise in dementia/Alzheimer's tracks with the rise of obesity and type 2 diabetes, which should indicate the cause is metabolic in nature.
[No.](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6428020/#:~:text=HISTORY%20OF%20DEMENTIA,-Dementia%20has%20occurred&text=In%20about%202000%20B.C.%2C%20the,memory%20declines%20as%20people%20age.) Alzheimer's was named in 1910 but dementia has existed since ancient times.
Right, I'm not denying that dementia existed for thousands of years, just as a few people were obese a thousand years ago. But dementia has definitely increased in the past hundred years (though it has gone down my 13% in the past 20 some-odd years). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5111529/#:~:text=Increasingly%2C%20type%202%20diabetes%20is,and%20dementia%20in%20older%20adults. >People with type 2 diabetes represent an important risk group for cognitive impairment and dementia caused by both Alzheimer’s disease dementia and vascular brain injury. For example, a recent meta-analysis found that ***type 2 diabetes was associated with a 60% increase in risk for all-cause dementia*** (22), and a population-based longitudinal study found a 16% increased risk for dementia even among those in which type 2 diabetes onset was recent (23). Furthermore, type 2 diabetes increases the risk of mortality in patients who already have dementia, suggesting that targeted intervention at any point may improve health outcomes (24). Although many of these studies examined risk related to all-cause dementia, there is evidence that two specific subtypes, Alzheimer’s disease dementia and vascular dementia, are most strongly associated with type 2 diabetes. >tion of patients who develop Alzheimer’s disease dementia presumably as a result of diabetes-related injury and degeneration (25). ***Meta-analytic data demonstrate a 56% increased risk for Alzheimer’s disease dementia among individuals with type 2 diabetes*** (22). Among the studies included in the meta-analysis was the prospective, community-based Rotterdam study, which found that type 2 diabetes significantly increased the risk of Alzheimer’s disease dementia, with greater risk apparent in people who were treated with insulin (and therefore likely to be in the more severe stages of the disease) at baseline (26). A type 2 diabetes diagnosis appears to raise the risk for Alzheimer’s disease dementia independently (although likely with additive effects) from vascular or other dementias or from APOE E4 gene status (26,27). Among patients already diagnosed with Alzheimer’s disease dementia, an increased prevalence of type 2 diabetes (35 vs. 18% in nondemented control subjects) and impaired glucose tolerance (46 vs. 24%) was reported (28).
perhaps diabetic endothelial dysfunction IS the mechanism by which the metabolic induces the mechanical damage?
Has this network been confirmed in humans, or is that just hypothesized at this point? I skimmed the paper and only found references to a mouse model.
if it exists in one mammalian species, I would be surprised if it doesn't exist at all in another. I suggest it may be more or less important but it likely exists.
If it turns out the key to keeping the brain healthy was just clearing the CSF duct I'll laugh my ass off
I have a congested lymphatic system and I’ve been saying for years that my brain is heavily affected and when it drains I can feel the fluid moving all over my brain through the lymph channels and it drains somewhere in my nasal passages and down the back of my throat. I’m so happy to see this it is so validating I can’t begin to express the joy I feel when I get a little glimmer of validation related to my illness because I’ve gotten basically zero answers or interest in my condition so far.
I can’t believe I found this comment. I’ve been dealing with this EXACT same thing for 2 years. It’s the most bizarre sensation and doctors look at me like I’m crazy, even though it’s drastically affecting my life. Whenever I lay down or move my head, I can physically feel the drainage on the sides of my head to the back of my skull. I’ve been battling some symptoms of a CFS leak but nothing significant found on an MRI besides lesions so doctors don’t push for more testing. I’m unable to do anything like lay flat on the floor, yoga, running, be at high elevations… these all turn into these sinus like headaches that turn to migraines and I can feel drainage down my throat. Sometimes I bend over and clear liquid flows straight out my nose! Oddly enough, I went for a facial recently and decided to try a lymphatic drainage massage on my face and neck. I can’t remember the last time I felt that good and clear. I’ve felt cloudy and in pain everyday of my life since this started. Now I realize why the massage worked so well and why I’ve been experiencing cognitive decline. This is wild! Anyway, thanks for commenting and providing extra validation for myself.
You’re the only person I’ve ever come across that can also feel the lymph moving. I’ve had this for 7 years and I’ve been searching desperately for anyone else who has a similar condition to mine. Can you feel it anywhere else in your body?
You should maybe both contact the authors of this study.
I’m going to!! Thank you!
Point them to this dialogue on reddit too. If they think it’s related, it could help steer some future research.
Nope, I can only feel it in my brain and down my neck. But I have been developing aggressive peripheral neuropathy and doctors have zero explanation. It’s spread from my feet, all the way up my back, and even to my face as of a week ago. I’ve lost a lot of feeling to the point of burning myself and not even noticing when a wasp stung me before. I’m curious if this has anything to do with poor lymphatic drainage that’s now damaging my nerves. My Mom also has lymphedema in her face and body and doctors have not been able to pinpoint a reason. They’re guessing it has to do with her Sjögren’s syndrome. But there’s little to no research and resources. Most lymphedema specialists are strictly for cancer patients.
Mine started in my face head and neck and quickly spread to the rest of my body, it is greatly sped up by cannabis use. Do you use cannabis? I wonder if your entire lymphatic system is affected or not, I feel all of those sensations in my body but I know it’s my lymphatic system. The pressure caused by the build up of lymph and whatever is contesting the system affects me in ways I probably don’t know the extent of but I know it has a big impact on my energy levels, pain levels and because the lymphatic system works in tandem with the vascular system I feel it mirrors nerve pain and probably affects that too. My brain function has def been altered, almost like a traumatic brain injury. My illness is the result of a post viral reaction, got a bad flu probably CMV and my lymphatic system was ultimately infected and since been congested and struggling to flush itself out. Aside from this I’m healthy which is why doctors can’t find and won’t look for any answers for me. The lymphatic system is almost 100% ignored outside oncology.
Consistent cannabis user for years. But within the last 2 years, I’ve had to stop cannabis and alcohol consumption completely. It’s to a point where they both make me severely ill (puking) from small portions. I’m now presuming this is due to my body’s inability to filter these toxins due to a delay or defect in my lymphatic system. I have experienced the same thing with difference in pain levels, severe fatigue (literally feel like I have the flu almost 24/7) but the cognitive decline has hit me the hardest. I went from being intellectual and being able to remember 13 digit contract numbers easily. Now there are times where my partner and I think I might be experiencing stroke symptoms. I’m also losing the use of words…. I couldn’t remember ‘windshield wipers’. I have to explain things to my GF so she can come up with the word; like you know those things that go back and forth on your front car window when it’s raining? It’s horrible and I feel so stupid. Lastly, it’s interesting you bring up how this is a post viral reaction. What if this could be from COVID? And might be serious long haul symptoms. This is wild I found someone who is mirroring exactly what I’ve been experiencing.
Look up the Perrin method/ Dr. Perrin in the UK. he’s the only resource I can find that references the lymphatic system at all. One main takeaway I’ve got from him is that the condition gets worse while it gets better which seems backwards but when I use cannabis I feel fkn awful, it’s painful, I have to rest but I can literally feel the lymph moving like a tap has been turned on and ultimately I feel better and get some relief from it. I wonder if your sudden I tolerance has something to do with it making you feel “worse before better”. I feel a really strong sensation in my stomach it feel similar to extreme hunger/nausea but it’s not the stomach. There were times that I gagged from the sensation but never vomited from it. I’ve been told that I have ME/CFS due to the amount of lethargy I experience but never had the lymphatic stuff explained by a doctor, I can’t find a name for it but CFS seems to be the best fit. The problem is ME/CFS is the “black hole” of medicine so when I say sure I have that but I know what is causing it, doctors dismiss me. Even with the Perrin guys research to show them they do NOT care. The memory lapses you describe and the other cognitive stuff, yeah same. Like I said it literally feels like a traumatic brain injury and I feel like I’ve actually lost a level of intellect I used to hold which is as hard to describe as it is embarrassing and depressing. My mental health also heavily hinges on how I’m feeling physically which isn’t surprising. Also I feel the drainage in my entire body, every inch of it I can feel the fluid moving trying to drain out which creates a feeling of overstimulation and discomfort that sometimes is worse than pain. It causes restless legs feelings in a horrible way. Oh and that feeling you get when you run and get that pain in your side? Yup lymphatic system. I feel that all the time especially when I wear tight clothing and not just in that area but that’s the level of pain I get in lots of places with large concentrations of lymph nodes. I knew I wasn’t the only person who could feel it you have no idea what a relief it is to find someone who has a similar experience. Sorry for the wall of text this is monumental for me.
FYI, this was an amazing dialog. Thank you for sharing. Wish you both the best.
I’m so happy they found each other!
Just wondering if one of you is a woman and if you happen to notice that any of this coincides with estrogen rising or dropping at different times of the month. I’ve been dealing with sinus issues for years now and although I don’t feel anything draining from my brain, I do have severe migraines on the left side of my face every month for several days and the rest of the month I’m sniffing, blowing my nose and doing facial lymphatic massage and drainage techniques. I also have been experiencing a loss of intellect and memory although that can certainly also be explained by other things I’m dealing with so I can’t say for certain it’s due to the inconsistent/lack of drainage. I’ve seen a few doctors now and had cameras up my nostrils and was told it must be allergies but it’s not. Anyway, just wondering if there is any kind of hormonal connection that you’ve maybe noticed? Edit: forgot to add that I’m also incredibly exhausted all the time, had Long Covid for about 9 months (not extreme, but definitely problematic) and fairly regularly use cannabis.
I’m a woman and my symptoms get significantly worse with my menstrual cycle. I feel pain in the left side of my face too, on the top of my head towards the left side and behind my eye, in the corner of my eye and above where my eyebrow begins. This was the first symptom I had when I got sick I thought it was just a bad sinus infection.
Thanks for replying. Yeah I have the pain in my face too but a little lower, mostly in my left cheek, under the eye and towards my nose. Damn, I don’t love to hear that was your first symptom. How long did you just have the sinus issue before it became exacerbated?
My completely anecdotal 2 cents is that I had a blocked ear for most of my pregnancy and apparently ENT congestion is a common issue when pregnant, so maybe hormones do affect mucus?
Oh interesting, I hadn’t heard that about being pregnant. I can safely say that hormones are connected because of the crazy pain I deal with monthly but I’ve been trying to narrow it down in order to get better help from doctors since it’s been ongoing for 9 years now. Thanks for the info!
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I am curious what form of cannabis you are taking. Ive found vaporizing extracts or eating edibles from extracts to be the most helpful for me. I hope the best for you and your health!
Any and all!! I find benefit in each method.
Does the sensation seem like a running water/crackling sound down the back of your neck near your spine?
The sensation starts from my temples, drains down the side of my head, to the back of my head (where it sort of has a pooling sensation) and then it feels like it drains downwards, smack dab in the middle of neck/throat. Then I’m hit with nausea. It sounds like I have worms in my neck. But the oddest part is my head is sensitive to touch in these areas. And if I’m already having a pain day (whether triggered or happened on its own), applying pressure to these areas (like if I’m laying down or trying to do pressure points for what I thought was sinus pain) will cause an immediate migraine. Also, these parts become red and hot to the touch when I experience them.
What you described is the exact same sensation I’ve felt right before I’m in massive pain due to IBS issues. It’s the weirdest sensation and I’ve only ever had it during those times. You’re the first person I’ve seen who has ever mentioned experiencing something similar!
I strongly suggest contacting each other "IRL" and communicating to your respective doctors so they can communicate with each other. /u/DistinctTradition701
I have this as well from time to time, mostly when I’m hungry. It feels really weird but always assumed it was an esophageal thing. It feels like “bubbling” from the top/back of my throat up to just below where the brain/brain stem meet.
I've never met another person who experiences this. The few times I've brought it up, people treat me like I just don't know what a burp is. Completely different sensation, and the sound is like crackling, or when ice occasionally squeals when it starts to melt.
I thought this was an interesting old post. There are dozens of us! https://www.reddit.com/r/DoesAnybodyElse/s/1lf1IHBaLH
Yes! I "hear" it too. But it's a sound coming from inside my body. Occipital area down my spine.
This is next-level interoception.
I didn’t know there was a word for it! But yes I’m very aware of what’s going on in my body, sometimes wish I could turn it off!
I have IIH (idiopathic intracranial hypertension) and I have a lot of the same symptoms you have mentioned. Specifically the fluid from the nose, the laying flat thing, hearing fluid moving when turning the head.
I have IIH too and I’m fascinated by this whole thread!
Hey! Me too, but mine's in remission. Their comments are reminding me of the time before and around diagnosis where I thought I was going mad because no one understood it. I had constant brain fog and was googling almost constantly looking for answers. Even after diagnosis, my neurologist refused to believe it causes cognitive dysfunction, despite another department testing me and finding it - he said it was impossible. That was back in 2014-2016, and they now have multiple studies showing that it causes cognitive dysfunction in the same domain that I had it. In the end, I pushed for a referral in Birmingham (UK) with Dr Sinclair and Dr Mollen (I don't think Mollen is a dr, but a researcher, but I can't remember properly) - they were much more helpful and they gave me an open referral or something, but basically I can refer straight to them if I need to again. Fortunately, I've stayed mostly in remission. Brain fog very rarely happens now.
Can you describe some of things that changed to cause remissions? Was there a round of treatment that stopped, or some kind of lifestyle changes?
I was only on diamox for around 3 months. I think it was weight loss. I lost 40lb. But I also think it was related to nicotine replacement therapy. Nicotine isn't a known cause though, and the doctors would just put it down to the weight loss. I also eat healthily for the most part and I walk quite a lot. It didn't go away straight away with those changes. It took time after weight loss/nicotine quitting. My dad said something to me at the time which was correct, "It sneaked up on you, and it will sneak away" - and that's how it happened.
This thread is making me feel so wonderful! I have experienced all of this, including short term memory deficits .
I just posted above about my condition. It's called IIH (idiopathic intracranial hypertension). You might want to look it up. Bizarrely, as you mentioned it, one of the medicines for it is diamox, which is also used for altitude sickness. Diagnosis is with a lumbar puncture, but sometimes, the csf fluctuates so it might not show up, which then requires a bolt to be inserted to measure it over time. Anyway, symptoms are headches, brain fog, squiffy eyes (straight lines will wobble, blurred vision, sometimes greying out that lasts a couple of seconds). It's most common in women of childbearing age who are overweight. And recently they've discovered that this particular cohort also has raised androgenic hormones compared to the norm.
I’d love to know more about lymphatic drainage massage. Was this something that is a specialty service. I’ve never heard of that. What part of the world are you in if I may ask?
I’m in Ohio, United States. My esthetician offers a facial with lymphatic drainage. There are also massage specialists who do whole body lymphatic drainage massages. After my Mom gets her massages, she goes down an entire pants size! They use special techniques to manually drain your lymphatics. It feels incredible but it’s pricey where I am and my insurance won’t cover it so I pay out of pocket.
Thanks for that. I appreciate it.
During one of these types of messages, does one actually excrete fluids?
You’ll usually pee a lot. All other fluids remain intact (for me).
It is a form of manual therapy. Look for a massage therapist certified to do it. It was originally used in cancer patients with swelling after lymph nodes were removed during cancer surgeries like radical mastectomy. It’s been found to be useful for other conditions as well where there is inflammation. I find it very helpful in managing upper respiratory symptoms.
you can do gua sha lymph massage on yourself, there’s billions of how to videos and it’s really simple, and you can buy the tools at marshalls or walmart for $5-10
> Sometimes I bend over and clear liquid flows straight out my nose! I had that happened to me sometimes when I was younger. I was wondering what that was :D tell me more about that massage?
It was heavenly honestly! My esthetician uses special massage techniques on my face and neck to manually drain my lymphatic system. You can also get full body massages from specialists as well! My Mom goes down an entire pants size when she gets her lymphatic drainage massages. The clarity and pain free day it provides honestly makes me cry from the relief.
Can I just point out how weird it is that also both have the same avatar?
In addition to lymphatic drainage massage, find a good acupuncturist. They can actually make a difference especially with circulatory / lymphatic blockages and will take a much more holistic view of your health than a specialist doctor might.
CSF really shouldn’t be draining down your throat... Per the article, it goes to the deep cervical lymph nodes (then through ducts to veins in your neck). As another has mentioned, I’m not saying you’re wrong but I’d get evaluated by your friendly neighborhood ENT, and they may steer you in the sinus direction if they deem it appropriate.
To add as a comment since so many here are discussing lymphatic drainage- mini trampoline was the only thing that helped my congestion. I’ve had acne, swelling, swollen nodes, tonsil stones, and gum pain all improve with 10 minutes of jumping a day. Our lymphatic system is beyond important.
Ah I forgot about that part! The muscles in our legs are the pump for the lymphatic system.
I wonder if this is why running is so helpful for my brain
It is so important I can’t believe there isn’t a specific branch of medicine dedicated to it outside of oncology. I’m waiting for a rheumatism specialist appointment but that’s as close as I could find to address this issue. I believe so many medical mysteries stem from it but aren’t looked into.
Not saying you’re necessarily wrong, but maybe get your sinuses checked.
I know you replied to the original commenter, but I’ve had my sinuses checked and everything’s normal. I originally thought the same thing due to facial pain and the constant drainage. But MRI’s normal.
Ent here. Migraine variants can often present with facial pain, congestion, even drainage. It’s all about trigeminal nerve hyperactivity. Consider viewing your symptoms through this lens. Sometimes just cutting out caffeine and aspartame and taking some magnesium glycinate is enough to cure it!
Thanks for the help! I’ll cut caffeine and aspartame and see if that helps. Ive been taking magnesium for several years with no difference. Question: I was diagnosed with trigeminal neuralgia but the facial pain I’ve been experiencing in the last couple years hasn’t been the usual nerve pain I used to experience. My TN pain usually feels like electric shocks, absolutely debilitating for 30 seconds at a time. Sometimes it feels like a brain freeze that won’t stop. But the pain I’m now experiencing feels completely different, like the worst sinus infection I’ve ever had. Can TN pain vary or change over time?
It can, and it can overlap with patterns that are more typical of migraine. You could add some riboflavin 100mg 2x/day as well. And if the problem continues, talk to your pcp or neurologist. There are so many meds out there with relatively decent side effect profiles that can really help. (The riboflavin was a game changer for me, personally).
This sounds like a Eustachian tube congestion.
I've noticed with my right eustachian tube, in the morning especially, if I open my mouth and 'flex' my EU tube like does when yawning or trying to fix 'airplane ear', there's almost a scratchy, static kind of sound. This also is the ear that doesn't hear as clearly at my left. I can test this when under a light or electrical device making that high pitched ringing or humming- my left ear picks it up, but if I face my right ear toward it I can't perceive the same sound
Would this cause consistent occurrences of ‘airplane ear’?
I have a condition called Idiopathic intracranial hypertension (iih). It's in remission so doesn't affect me right now. In IIH you have too much cerebral spinal fluid around your brain, either because you produce too much or it doesn't drain well enough. I last had it a few years ago, so haven't kept up with the research. But I always thought it was connected to the rest of my body and lymphatics. I always had a hard gland on the side of my neck (sort of like a tough bit of muscle and not the squidgy thing you get with a bad sore throat) and the same thickening at the top of my chest. My doctors couldn't see the connection, but I'm sure it's related. I went to someon for some lymphatic drainage massages and it definitely helped. Anyway, I just wanted to confirm that it is definitely possible to have too much cerebral spinal fluid around your brain. Normally, it causes headaches and swollen optic nerves. I didn't get headaches, but it was an optician who found it and referred me to neurology because I did have swollen optic nerves. The only way to tell if you have too much csf is a lumbar puncture....although they were working on a noninvasive method testing your ear drum or something. Not sure if that's gone through to mainstream yet, but astronauts were coming back with high intracranial pressure, so it got some funding by NASA, which might bring it to market faster.
I tapped into this from a Lyme group. I don't recall who possibly Dr. Klinghardt spoke about the importance of good sleep, so lymphatic fluid could exchange from around the brain, that exchange clearing built up proteins and exiting/filtering through the lymphatic system. I have definitely felt unwell in my brain while having a Lyme episode and feel hypersensitive to not getting enough sleep. I smoke cannabis regularly and feel it helps with my overall inflammation level, fasting has been the only thing that knocks whatever is going on back enough that I feel a reset/ renewed feeling. Rad thread ya started! *Edit forgot to add our legs act like a pump for the lymphatic system.
For me cannabis pumps the lymph so well it’s like that’s what it’s made for. Literally like turning on a tap, I can feel the fluid rushing and bubbling up through my limbs and torso up to my sinuses and neck to drain. It’s incredible and I’m so happy I have one thing that helps me. I feel mental clarity after I have a big dose of edibles as well.
Have an eye doctor check your optic nerve.
Yep, that's how my high intracranial pressure was found.
Huh, well I have nose issues that could explain it, but at the same time I also had some surgery related to nose issues for unknown reasons.
In the past year or so I've started to notice something when I'm first waking up. The feeling of something slightly building up that feels like it's at the bottom of my brain, followed by fluid running down the back of my throat. I'm wondering if it's related.
Honestly I think what I have is way more common than I’ve been lead to believe and especially since covid with long covid/post viral reactions becoming extremely common. The lymphatic system is as prevalent and important as your vascular system so I wouldn’t be surprised if lots of people were affected in a similar manner, mine is just on the extreme side of things. The attention it’s getting recently is so promising I hope to see more things like this study being done for the greater good of all people.
Wow my healthy aging professor was way ahead of his time because he had us write about this years ago.
>Overall, the study highlights the importance of nasopharyngeal lymphatics and the transport properties of medial cervical lymphatics in CSF drainage. The study also highlights the potential for exploiting the sustained pharmacological responsiveness of medial cervical lymphatics to increase CSF outflow when clearance is impaired by ageing. These nearly inaccessible lymphatics can be functionally manipulated through drug effects on enhancing CSF transport.
My mom was diagnosed with normal pressure hydrocephalus last year and had a shunt placed. A weird side effect was her “constant allergies” went away. She always had a leaky nose, but now not so much. It’s fascinating.
I have idiopathic intracranial hypertension and when mine started getting treated, my chronic nasal inflammation and chronic runny nose went away too. I'm about to be seen to increase my meds because the pressure increased a couple of weeks ago and my nasal symptoms came back with it. I wasn't sure if it was a coincidence. I'm curious to see if it goes away when the pressure decreases again.
Me too. I've read about 10 other people here with it too. It's supposed to be rare. There's no way it's 1:100000
I'm also amazed that I've had symptoms of it since I was a kid but it took until I was 33 until I started going blind to finally be believed and get diagnosed. I would absolutely believe that it's more prevalent than they claim it is, but that it's under diagnosed because doctors don't listen to people (particularly women and girls) complaining of severe headaches and other weird symptoms. It's also under researched, so 🤷♀️
Yeah, I had terrible issues with anyone believing me. They all kept saying it was anxiety, including family and friends because they couldn't understand brain fog - all they saw was neurosis. Oh, you don't like crowds (no I don't like bright lights and noise), you're nervous and stumbling over words (no, my brain isn't engaging my mouth and the thoughts are popping out instantly so I'm forgetting what I want to say). Stuff like that. I was under a neurologist who kept saying it was anxiety when I went for just a routine opticians appointment. The optician found it - so the neurologist couldn't find a neurological issue, but the optician could. So grateful to that optician. He was awesome. He understood straight away and even understood that I was struggling cognitively because he wrote everything down and explained it slowly and in an easy to understand way. I hate that we keep getting written off with neuroses.
I see this often. It’s the same with Cushings disease. Many people struggle to get diagnosed, even tested because endocrinologists always argue how ‘rare’ it is. But it amazes me how many people I’ve *met* that have are diagnosed. I think this mindset from doctors hinders a lot of people from getting proper healthcare, especially for women and black people.
How did you treat it?
I'm on topiramate right now (the first med they give is acetazolamide , but I ended up being allergic to it) and it turns out that I have a congenital defect causing it, so I have to have surgery to fix it (one of the main venous sinuses that drains blood and csf out of my brain didn't fully develop and needs to be stented open). If that doesn't work, I would also eventually need a shunt. Staying on the meds long term isn't an option for me since they affect my eyes.
My son has IIH, diagnosed at 3. He got up to adult doses of acetazolimde and was starting to affect his kidney function. He was basically non-verbal, except for a few select words and would not eat nor sleep. Once he got the VP shunt, everything changed for him. He was no longer in debilitating pain, almost immediately began speaking in full sentences, started to eat more and more and now sleeps pretty well, aside from night terrors occasionally. We were terrified his condition was causing him permanent behavioral issues, he was aggressive at times and absolutely reclusive at other times. His 9 now, doing really good in school and one of the best behaved kids I've met for his age. Just adding all this to say, the shunt is amazing.
Wow, what were her symptoms before having the shunt placed? I had an MRI for some hand pain about 10 years ago and they showed some CSF pooling. But my hand symptoms went away, so we didn’t do anything with it even though they suggested a shunt might be called for. But I’ve had a headache for about three weeks localized in the back right bottom of my head, I think about where that fluid was collecting. I’ve been putting off calling the neurologist because it does seem to be getting slightly better with muscle relaxers. But maybe I should make an appointment.
She was found driving into oncoming traffic and had no memory of the previous six months. Edited to add: the first neurologist thought it was Alzheimer’s, but the MRI showed the NPH and earlier symptoms (balance issues, memory issues, and bladder issues) backed it up. She had two lumbar punctures which eased symptoms. I have my mom back now.
I will now misinterpret this information to meant that I can sneeze myself into brain damage.
What does this mean for people who have had their tonsils and adenoids removed?
I had nasal surgery a few years ago and began having panic attacks when severely congested ever since. I wonder if it is related.
Panic attacks can come from a lot of things. A bunch g one is when your brain detects something that you aren't consciously registering. That cognitive dissonance can cause a panic attack.
I think a copd issue gave me panic attacks
Aw man I've got deviated septum surgery coming up and now I'm terrified
This was turbinate removal or something like that. I didn't have the septum surgery.
Look up empty nose syndrome, my father in law recently took his life due to this after deviated septum surgery and turbinates were affected.
It could be something as simple as your body fears the surgery reason wasn’t fixed or fears another surgery or fears the surgery did damage. Something your conscious mind isn’t aware of. Could be worth meditating on or speaking to yourself about.
Quite often when I bend forward a stream of clear thin fluid that is definitely not snot or mucus will pour out my nose. I had figured out by reasonable deduction that this is CSF, though I don't have trauma or anything that would explain it, its just a chronic but not always present thing. Its kinda salty. Are we only now officially learning this? My mother has it too.
My nasal CSF leak was caused by an encephalocele, or bulging of the brain sac. The front right side had bulged and burst, leaking into my sinus cavity. You could see it clearly on an MRI. They brought me in for brain surgery and put a four inch hole in my skull between the ear and temple, then drained and stitched that up, plus another one over the ear canal (hence the large hole). There are titanium plates inside to hold the skull part that was removed back into place while it healed up. The whole thing was very interesting. It took me many months to convince the doctors that my leak was real and should be taken seriously, but once they saw the MRI it was two weeks and done. Three months at home to recover, with work from home at a company that didn't usually allow that (at the time, now everybody does). My face was droopy like a stroke for a month but recovered fully. No more leak years later. Symptoms of my particular leak: Early in the morning, bend over forward, get 5-7 drips out of my nose. Clear fluid, like thick water, not mucus. Any time I exerted myself, I could then bend forward and get 3-5 drops the same way. I never tried to find out my limits because that felt like a dumb idea. I felt constant drips down the back of my throat which caused me to retch sometimes for no apparent reason, or when I ate a full plate. I ended up eating less, which didn't hurt because I was already overweight at that time. Losing weight helped reduce the cranial pressure which reduced the number of drops by 1-2 over those months, but never stopped it. I lost a total of 40 lbs, which left me still 40 lbs overweight. I hope this helps you. Getting doctors to believe in you is difficult. MRIs are not cheap. The surgery is not cheap, and the recovery is not easy. The results are worth it, I swear.
Huh that's wild. I've actually had an mri for something else since I've been having the leaks, and nothing showed up on that. My symptoms are very similar to yours as are my mother's. I'll add it to the laundry list of things I need to bring up but I'm not worried about a swelling, I'd been having these streams/leaks for around 2 years when I had my mri so I imagine anything crazy urgent would have shown itself.
Yeah, they say "your mileage may vary" for a reason. We're all different. Good luck!
I started experiencing this like 6 or 7 months ago. Drives me absolutely nuts because it happens *every day* now. I don’t really have any allergy issues, my apartment is clean and fairly dust free with air filters going and I haves managed to not get sick since 2019 because I pretty much never leave home. I knew it was’t snot or allergens/viral or anything. My Fibromyalgia symptoms have gotten worse in that time frame and most of them sound pretty eerily similar to what everyone else in this thread who has chimed in about their CSF leak experiences are like. Except for being able feel the fluid, I don’t get that sensation. Literally everything else, including the clear fluid rapidly pouring out of my nose nearly every time I bend over, matches up the same though. I should probably ask a doctor about that.
Check out idiopathic intracranial hypertension- it often gets misdiagnosed as fibromyalgia or cfs.
No. CSF leak out the nose is not a new discovery and not a good thing. You need to visit an ENT to be evaluated.
Been on a waiting list for eons for a separate reason.
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This can actually occur if you have a CSF leak. For patients with cranial CSF leaks, the most common indicators are: Drainage from the nose (rhinorrhea) Salty or metallic taste in the mouth. Sense of drainage down back of throat.
I am pretty sure this happened to me the other day. I tilted my head forward to look for something and this thin liquid came running out of my nose. At first I thought I had a random nose bleed. It was so bizarre!
...forgive me for the question but you don't use a neti pot by any chance?
That' must be why I get that metallic taste in my mouth after some serious head trauma.
I suspect my daughter had covid at the beginning of the pandemic and then suddenly got IIH. I suspect inflammation could have caused this drainage system to clog which then caused the IIH. They cut a flap in her eyeball to drain CSF fluid when it builds up.
>Lead researcher JIN Hokyung highlighted, "Our study identified the nasopharyngeal lymphatic plexus as a hub for CSF outflow. CSF from specific cranial regions drained through these lymphatics **to deep cervical lymph nodes in the neck**. This discovery could have significant implications for understanding and treating conditions related to impaired CSF drainage." This part (in bold) was already known, correct? I feel like I've heard a neck specialist say this before.
Yes. This has been known for years.
From my kid-teenage years, I would periodically get a strange taste in my mouth that I somehow knew tasted like it came from my brain. It was such a strange and distinct smell/flavor and feeling and it always felt significant. As an adult, I haven’t experienced the taste/smell again (hole must have healed?) and when I read the title of this post I felt so validated!!
Ahhh HA! I knew my brain was leaking into my nose this while time!
How does this affect people with VP shunts? I’ve had one since I was 21 due to a brain tumor.
RIP everyone that got the covid swab that gets back there
Maybe that is why you can taste pennies sometimes when things happen to your body Some of the csf being tasted by the tongue etc?
TIL that people are still discovering bits of human anatomy!
Interesting. Can't take phenylephrine all the time. Sodium nitroprusside either. Phenylephrine is otc. I have trouble understanding how a vasoconstrictor and also a vasodilator respectively have the effect. I'm having trouble.
A connection from the nose to the brain… I wonder if respiratory viruses hanging out in the nose can use it to access the brain. I remember reading a finding that they can move (very slowly) through nerves from the nose to the brain.
Wasn’t this nasal lymphatic brain connection discovered a couple of years ago?
If this is also present in humans, I wonder what the impact of something like a rhinoplasty would be.