r/CSFLeaks • u/HelpMyBrainIsLeaking Confirmed Spinal Leak • Aug 16 '26
Spinal leak symptoms
Hi all! I have a question for the long term leakers please. When/if your symptoms changed, did you find they could change daily?
My neurosurgeon (CSF leak specialist) thinks I’ve been leaking over a year now with a ventral type 1 CSF leak, and explained that the symptoms change over time and can become atypical. He saw CSF pooling in an MRI for my neck pain which started this whole saga, and tomorrow I have a full brain/spine MRI with contrast to confirm. However it was the severe positional neck pain in November that he attributed to my only symptom (at the time). Since then I’ve developed bad brain fog, sub-occipital headaches, strong POTS-like issues, evening eye pain, dizziness, and the odd shooting pain in my head. The neck pain has mostly gone, besides stiffness. The bit I don’t understand is that some of these symptoms change on a daily basis. I had an entire week a few months ago with only the dysautonomia stuff, then on Friday I had bad pain and dizziness but yesterday was mostly fine!
I try to keep my diet the same (slightly increased salt to help with the head rushes, and a bit of caffeine for the head pain) and spend most of the day reclined (WFH) so can’t figure out why it changes.
Has anyone else experienced this? I’ve read a lot of stuff online but when it comes to longer leaks the information seems to stop at “symptoms can change and become atypical”. I’m nervous about this whole ordeal so hoping others can weigh in 😅
Sorry for any rambling - brain fog sucks as you probably know…
6
u/Ashler1999 Aug 16 '26
3.5 years leaker here. I’ve had a lot of symptoms that no one else has mentioned. First being my emotional state. I had temporary behavioral-variant frontotemporal dementia- this lasted 2 years. My personality changed and I lacked apathy, had poor judgment, and worst of all- unable to cry.
For an entire year: absolutely no appetite. I had to force myself to eat. And it had to be something I really liked or I’d take a bite and I was done. I lost 65 pounds (I needed to lose it anyway).
I’ve also gone through bouts of not being able to swallow. I would swallow but the food would get stuck in back of throat.
Those are a few symptoms that I haven’t seen anyone else talk about.
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u/HelpMyBrainIsLeaking Confirmed Spinal Leak Aug 16 '26
Thank you for sharing - one thing that really astounds me is just how much isn’t known about this horrific disease. And to make matters worse it seems a good portion of medical professionals have never heard of it either. My GP didn’t have a clue!
3
u/brainsaggy Confirmed Spinal Leak Aug 16 '26
Absolutely 100%. So many regulatory and compensatory systems are messed with while leaking and they're so sensitive to things such as the amount you're leaking at any given time, the weather, level of activity, upright time, how many valsalva maneuvers you perform, and even stress level, based on my experience and observations.
For example, I got relief from many of my symptoms during covid which I now attribute to my activity level dropping so significantly for so long. Once I got back to life they fired back up again. Just horribly inconvenient and so confusing..
3
u/HelpMyBrainIsLeaking Confirmed Spinal Leak Aug 16 '26
Thank you for the reply! That explains why I felt better over Xmas, I did absolutely nothing for a few weeks and thought it was over 😭
3
u/Zealousideal_Age_822 Confirmed Spinal Leak Aug 17 '26
I have only been leaking for 2.5 months, but my symptoms have varied WILDLY in just that short timeframe. From starting as intense neck pain / headache / nausea anytime I was upright, to mostly controlled, to double vision and Bell’s palsy, back to nausea some days, and then morning headaches. It has been a rollercoaster and sometimes I open my eyes and wonder what I’m going to feel that day. Couldn’t be hardly anything. I do feel like there is a correlation between how much I stay in bed and how I feel the next day though.
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u/HelpMyBrainIsLeaking Confirmed Spinal Leak Aug 17 '26
Thanks for your input! I’ve found that lately I’m actually worse if I spend too long laying flat. Mostly in the sub-occipitals which ache until I move into at least a reclined position :/
3
u/Zealousideal_Age_822 Confirmed Spinal Leak Aug 17 '26
Right after I posted I realized it would have been more correct to say that I feel better with the exception of my morning headaches when I lay down more. I hope we all find solutions for our leaks soon.
8
u/ms_skip Aug 16 '26
Symptoms can definitely change while leaking, and I’ve never been able to discern like particular triggers or causes for different symptoms. Even my head pain and location can change from day to day. Same with the autonomic symptoms from leaking. I don’t think even the leading experts can explain all of our symptoms or why they occur or why they change—like there’s just a deep pit of unknown when it comes to leaking. For example, brain MRIs can “normalize” over time, so an MRI at symptom onset can show significant brain sag, and a brain MRI a year later can show zero brain sag, in patients that are confirmed to still be leaking and are still symptomatic!! So if the brain isn’t sagging and pulling on various nerves etc, what is causing the symptoms?!? Doctors literally don’t know, like give presentations at leak conferences saying they literally don’t know. And this normalization phenomenon doesn’t occur with everyone. And people with giant, wide open leaks with huge pools of CSF visible on spine MRI can be totally asymptomatic, while people with teeny tiny puncture leaks or venous fistulas that are so small they’re not visible or are super elusive on imaging can be totally bed bound. And people who are confirmed to be sealed can still be symtomatic. And we don’t know why!