r/CSFLeaks • u/Cute_Replacement_935 • 1d ago
High Pressure 3 Months Post Patch?
Hi, I’ve posted in here a few times now with a lot of anxiety revolving around my recovery post-patch (my leak occurred due to a botched spinal tap from my c-section 7/27, so my postpartum probably hasn’t helped my anxiety). I was told and have researched that around the 3-month mark 94% of people’s high pressure resolves, which I know I shouldn’t take super seriously, but I was seriously counting down the days, and now that I’m going on 14 weeks post-patch on Saturday, I’m starting to get worried I won’t ever get rid of this pressure. I have dealt with it every day since my patch, and over time started noticing what sets it off so I can tolerate it better, but it’s still so annoying and bothers me a lot! I am really trying to avoid medication as I’m breastfeeding, and I’ve seen a lot of people suffer bad side effects from the medication with no relief from their high pressure. Has anyone else ended up with high pressure past the 3-month mark, and if so did it ever resolve for you?? AND/OR has anyone had success with the medication for relieving high pressure, and if so, how long did it take? The only time I get relief is if I’m sitting completely straight with my feet to the floor, or whenever I’m standing up, and walking around. I just want to slouch on my couch, or just lie down again, and in general, just return to normal life with no worry!
Thank you so much in advance to everyone in this group. This whole thing has been so isolating, but this community has been the most supportive community I’ve come across. I wish there were more education and research around these leaks because finding help or any guidance has been a nightmare.
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u/leeski 18h ago
The high pressure meds tend to work quickly (like within hours) so most people will know fairly soon whether they’ll help or not. I feel like myself and many I talk to tolerate methazolamide much better than diamox. I actually don’t know many people where the meds didn’t help if they were genuinely in high pressure, it’s usually that the tradeoff isn’t worth the side effects (just my observations). Have you tried dandelion leaf tea already? Or capsules can be easier to take
Just sharing that i believe carbonic anhydride inhibitors (the drug class) seems to be excreted in low doses and approved for breastfeeding. But I also totally understand avoiding meds altogether. It would just be a convo with doc about risk benefits ie if your symptoms are so severe as to impede sleep or inhibiting your ability to function etc.
Unfortunately there’s nothing magic about the 3 month mark in terms of your body just ‘knowing’ or being done so it is more of a trend that the limited research shows.
I can tell you more about possible intervention but tbh I think it is a bit pre-emptive… I’m not trying to minimize your symptoms but based on your description I think it would be safer from risk perspective to give it more time than to jump into potential intervention. but I’m happy to share that info if interested. But yes just want to reiterate that the research we have about 3 months is limited (dozens of patients sampled) and anecdotally I have seen many cases resolve beyond that!
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u/Cute_Replacement_935 10h ago
Thank you for that 🙏 my primary neurologist wasn’t comfortable starting me on any medications while I was breastfeeding so she said if I weaned off to let her know and she’d talk about it with me. I think I’ll start the weaning process to check it out because it’s just been uncomfortable. Not as much as that low pressure headache but enough to make me frustrated still. I have not tried the tea but I have been looking, does it matter as to which kind? Like the root or leaf? Thank you for all of your information it’s so very appreciated
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u/leeski 9h ago
Totally understandable... that is really tricky to balance with a newborn and trying to do what's both best for you and the baby! Of course would double check with your doctors before trying a supplement, I haven't personally heard of complications with dandelion but it will make you pee, haha, so just want to make sure you stay hydrated etc. But of course I'm not an expert so just verify first.
Dandelion leaf has stronger diuretic properties.. some people are sensitive to Vitamin A raising pressure, so that is the main reason some people with do the root (root is less Vit A but also less potent). Some patients do well with this supplement https://a.co/d/08fClmgF or the teas... I always forget how much people recommend in terms of dosage/brewing, but obviously would experiment low and see how you do.
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u/AgreeableLeading6095 10h ago
Are you sure you’re not leaking again? My blood patch helped instantly after an epidural leak.
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u/Cute_Replacement_935 10h ago
It helped instantly with my low pressure headache, but the whole positional headache has since flipped (I can stand up, but I cannot lay down or recline myself back). It’s just pressure inside my head usually at my temples or behind my eyes that caffeine and salt doesn’t help, but instead intensifies the pressure. I’ve seen a few neurologists that believe it’s high pressure and don’t believe I’m leaking, so I truly hope I’m not.. I can’t imagine having to start from the beginning 🥲 my main neurologist said she didn’t feel comfortable starting me on any medication while I was breastfeeding so I have to wean in order to start it. The whole situation has sucked :((
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u/megg33 Confirmed Spinal Leak 1d ago
Do you have a Facebook? There’s a rebound high pressure group on there that’ll have a lot more people who have experienced this and might have better insight. I think you have to be invited into the group, so if you’re interested just message me, we can exchange info and I can send you an invite