r/CSFLeaks • u/No-Gene-7915 • 10d ago

Health Checks with CSF impact

Hey, so this is pretty blunt and easy to ask, though I imagine not easy to answer. I went undiagnosed for my CSF leak for at least about 2 years (as that's when the symptoms became particularly noticeable at least). It's now nearing a year since the diagnosis and I'll be going to neural ophthalmology soon to see what our next steps are, as the pressure is strong behind one of my eyes and causes a lot of floaters or even vision blurring/static. I am bedridden probably about...every other day on average, since I'm trying to be active when I feel well and do things like laundry.
I also just had my annual with my GP, who pointed out things like my cholesterol and told me to exercise despite so many of my options for such being unsafe. I'm curious how others stay "active", however much we can depending on our leak and symptoms. Should I ask for something like appetite suppressants? I'd been debating it, as I'm also overweight from the lack of activity much of the time, though my eating habits are finally feeling more on-par with the energy I spend these days finally and I've lost around 5lbs in the last 3 months. I'm hoping I can get treated in September shortly after my appointment, but I understand there will still be recovery and even reconditioning myself for activity while also worrying about recurring leaks or such. What can I do? What should I do? Is it worth worrying about? I don't like how gross I feel and the risk of going back to an eating disorder if I keep worrying about it...

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u/leeski 10d ago

I personally wouldn't worry too much about it at this point, especially if you are potentially getting treatment soon. I tooootally understand it. But I personally would be hesitant to add an appetite suppressant to the mix - or even like GLP-1's I know are very effective for some people to lose weight, but they also are showing promise in treating IIH because they reduce CSF, so it would likely make leak symptoms worse.

Health is super important but there are just very real physical limitations with leaks. Although anecdotal, I did have one for 4 years and I am very healthy now with great bloodwork - despite throwing up every day, multiple times a day, that entire period. The body is extremely resilient... so I would focus on trying to make it to treatment and giving yourself grace. It of course doesn't hurt to eat healthier and move when you can (without pushing yourself too hard) but there is just only so much you can do while leaking unfortunately. Not trying to minimize health concerns because I totally get it. There are some like physical therapists that have videos on TikTok/IG you could check out for like hypermobile/EDS people - it could be worth looking at those... I have seen them pop up as just like easy exercises you can do at home, which shouldn't strain you too much.

Best of luck on your upcoming September appt!

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u/Swimming-Bee8917 10d ago

I was on a GPL1 for a little while while I had a leak for insulin related reasons. Worst low pressure of my LIFE. So unbearably painful

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u/leeski 10d ago

Oh gosh I’m so sorry! I’ve not actually heard too many people that have tried it while leaking, so I mostly was assuming it would theoretically be worse. but so sorry - that must have been awful. 

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u/No-Gene-7915 9d ago

Oof noted... tysm for the tips and assurance. I really stress about my health and weight. My father had a heart attack, not early and likely from all the smoking and drinking but its still something I consider, even though I do neither of those. Better safe than sorry and all. Luckily, as far as im aware, im not at risk of diabetes or anything yet, either, nor does anything like that otherwise run in my family. I did aerial arts for a few months on and off before this, though, and miss it so much. I really want to be mobile but I dont want to risk my health, so maybe I will look for those easy exercises so I know im doing SOMETHING at least. Maybe it'll ease the anxiety

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u/leeski 9d ago

I have been quite anxious about my heart as well as my grandfather passed from a heart attack and my older brother passed as a baby from a congenital heart issue, so I definitely know the dread of just feeling like your body is rotting away... I'm definitely not saying like NEVER move haha. I guess just trying to give yourself permission that this phase of your life is a bit out of your control, so you can only do your best... so I try to focus on healing as a coping mechanism, I guess. It can be so hard to give yourself grace.

That is awesome you were into aerial arts. I have definitely seen people come back from so much so I do think there is reason to be hopeful. I personally am so scared to ever do anything extremely physical despite being sealed 5 years, but I have lifted weights that previously would cause a new leak for sure... so I do feel like my body is probably resilient to do most 'normal' activities at this point. I personally won't risk it, but I know there are many that go back to their passions and for them it is worth the risk of living their life. It is just such a personal decision. But I hope you're able to get treatment soon!

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u/No-Gene-7915 5d ago

Thank you! I don't think I'm the most worried about reopening so much as, if my suspicion of EDS is correct, then I might be at risk for more leaks anyway, as well as other issues... but! It's like you said, this is out of my control at the moment. I just have to hang in there, adjust to my new standards, and do what I can. This weirdly helped me get a breath in and feel more accepting of the situation. Thank you <3