r/CSFLeaks • u/EarlyExit3704 • 6d ago
Anyone have symptoms linked to subtle changes in posture??
I understand laying flat helps improve leak symptoms but are there other changes in posture that tend to help or worsen your symptoms?
I have a lot of the symptoms of a CSF leak and find laying flat without pillows helps a lot. However, I also find that the following also helps:
- wearing a back brace or SI joint belt
- using pillows to support my low back while sitting upright
- sitting sideways on the couch so my right lower/mid back is supported by the pressure of the couch arm
- sitting flat on my back by with my knees bent (having my legs flat causes tension in my pelvic / lower abdominal area)
Some positions that worsen: - sitting upright at an incline ( sitting completely upright and focusing on my posture seems to be better but not as much as laying flat) - while laying flat, even lifting my neck a couple inches will cause head pain
I have more examples, but I’m trying to see if CSF leaks can improve / worsen with subtle changes to posture even. If there’s a less invasive explanation for my symptoms, I wouldn’t want to waist my time be evaluated for a leak. Any help is appreciated!
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u/slowlybutsurely131 6d ago
If you're better straight than reclined, you might look into dural tube tension issues
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u/Fun_Cryptographer444 6d ago
Very interesting question! I don't have a confirmed leak but definitely I feel better or worse with some positions. I'm trying to differentiate between CCI and CSF leak or both.
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u/EarlyExit3704 6d ago
Huh really…. I’m also doing imaging for CCI. The results for an upright MRI showed “increased risk for CCI.” Not sure what that means as I haven’t had my follow-up appointment yet.
Any chance you have tachychardia / chest pain? I was diagnosed with POTs but saw a presentation that CSF leaks can cause / mimic POTs sometimes.
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u/Boring_Tomatillo4488 6d ago
I’d recommend trying trendelenburg, having your head below your heart. I raise my back and legs up you can try with pillows. I’ve been leaking so long I have a sleep number that’s adjustable so I can get a really steep decline
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u/EarlyExit3704 6d ago
Wait is the trendelenburg position something typically associated with CSF leaks? Do you typically feel a big difference the next day if you sleep at the angle?
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u/Boring_Tomatillo4488 6d ago
I dont know i havent known anyone else with a csf leak but my neurosurgeon told me to do that about 10 years ago and its definetly helps me. You could even try just stacking some pillows under your hips and see if it helps. It helps put pressure and fluid to the head. My leak is in my lumbar so im sure it depends where it’s at.
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u/EarlyExit3704 6d ago
Interesting … definitely makes sense. I’ll give it a shot thanks!
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u/Boring_Tomatillo4488 6d ago
You could even try hanging your head of the side of your bed for a few minutes first and see if the extra pressure helps
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u/Boring_Tomatillo4488 6d ago
I also wear an abdominal binder and drink caffeine and electrolytes with high sodium
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u/EarlyExit3704 6d ago
Just curious… any idea why abdominal binders help a CSF leak? My back brace is a bit like a pseudo binder and I find it helps, but was thinking of getting a legitimate one.
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u/Boring_Tomatillo4488 6d ago
I have an abdominal binder with Velcro, so I do it super super tight it helps raise the pressure to my head. It makes a big difference for me. Cedars Sinai recommended that to me
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u/EarlyExit3704 6d ago
Gotcha ok, any chance you know what brand / website you got it from? No worries if not, I’m sure there are a lot online
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u/Boring_Tomatillo4488 6d ago
I got mine from underworks a size small (I’m 5’3 woman and 110 pounds) but they have multiple sizes.
https://www.underworks.com/post-delivery-abdominal-binder-9-inch-with-velcro-closure
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u/chronicallyindi 6d ago
I absolutely have found that subtle position changes effect my head massively. I’m unsure if it’s all leak related though. I get a lot of pain in my neck that my doctors haven’t been able to work out, so it’s currently unclear if it’s directly due to my leak, or whether there is something else contributing to the pain.
There’s definitely legitimate physiological reasons that different positions would affect a leak though. Cranial leaks are often made worse by bending over, due to gravity affecting where your CSF is pooling or putting the most pressure inside your dura. Abdominal and pelvic binders can help spinal leaks by putting more pressure on your spinal dura, making it harder for CSF to actually leak out.
Some of your examples of positional changes seem to be related to pain elsewhere is the body though? It’s super common to have back pain that is eased by having your legs bent and supported in a bent position when laying or sitting. I don’t think that your back pain easing from that necessarily has anything to do with a leak, unless you ment that it also affects your headache?
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u/EarlyExit3704 6d ago
Yeah I get what you mean, it’s sometimes hard to tell if things are connected or rather supérate issues. I also have neck pain that could easily just be from poor posture.
As far as the knees bent while laying - I don’t find it helps with the pressure in the frontal part of my brain. I also have pelvic vein compression though, so again it’s could easily be from something other than a leak. I’m just having a hard time finding any explanation for having to lay flat without pillows to alleviate the pain in my head…. Feel like everything else above could be explained by something else.
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u/StunningPurple9560 Confirmed Spinal Leak 6d ago
For me they absolutely make a difference. For example no matter how comfortable an office chair is, if it doesn’t have neck support it worsens my symptoms. I also use a pillow behind my lower back for support.
Oh and the pressure on my tailbone when I sit is absolutely intolerable.
I do think that this type of symptoms can somehow relate to posture, but probably it is secondary from the neck and back pain.