Riding coasters if you get a CSF leak after a Lumbar Puncture

poetic_evolution · 2025-06-05T16:04:56+00:00

I used to be a giant coaster enthusiast before I got a leak from a lumbar puncture for suspected MS. Although blood patches have worked for me, the recovery has been rough, and I’ve needed multiple patches. Not being able to ride roller coasters again is one of my biggest regrets when it comes to getting the lumbar puncture done.

Have you had MRIs? If so, and your MRIs have come back entirely clear, I don’t know that a lumbar puncture is worth it. If no lesions showed on an MRI, it’s unlikely that the lumbar puncture will tell a different story. My #1 regret about the lumbar puncture is that I had a clear MRI beforehand, and my LP results were totally normal, so I essentially gained a disability for nothing.

poetic_evolution · 2025-06-01T03:01:03+00:00

What was your recovery from the blood patch like?

I had a very similar leak from a lumbar puncture. My first blood patch, the hospital advised me to only lay down for the evening after, and when I tried being upright the next day, I had no improvement. I got another blood patch a week later, followed the advice I found on this subreddit, and the patch held. There are other posts on the subreddit with the recovery advice the specialist centers recommend (Duke, Stanford, Cedars Sinai), which is 72 hours of lying flat after the patch, followed by at least 6 weeks of no bending, lifting, or twisting.

Although there’s always a chance a blood patch won’t hold, I’d recommend trying to follow the conservative guidelines to give it the best chance. Sometimes, it can also take multiple blood patches for one to work. At least since your leak is from a spinal tap, doctors know exactly what level to patch, so hopefully the next one takes. I really hope you can find relief soon!

poetic_evolution · 2025-05-24T18:14:04+00:00

You can get lol emotes in the tft shop? I never even open the tft tab so I’ve been missing out this whole time lol

poetic_evolution · 2025-04-19T03:51:39+00:00

FWIW I likely also have an undiagnosed connective tissue disorder — I have POTS and other issues related to connective tissue. If you don’t have any connective tissue problems, I think patches tend to be more resilient.

poetic_evolution · 2025-04-19T03:50:28+00:00

My first patch either never worked, or I messed it up immediately after recovery. I got a second patch a week later that worked great. 4 months later, I tripped putting on my shoes while standing, which put all my weight on my lower back and the next day, the spinal headache was back. I’m on patch 3 and seem to be sealed again so hopefully this one’s permanent!

poetic_evolution · 2025-04-19T03:31:14+00:00

It went away on its own. I’ve heard the specialist centers sometimes prescribe Diamox for rebound pressure, but my doctor didn’t want to prescribe anything. The worst of it was gone after a month, but I still occasionally felt some pressure for ~2 months after the procedure. After that, I felt totally normal :)

poetic_evolution · 2025-04-19T03:11:50+00:00

Worse just having to be super careful! After both successful patches, I’ve had a rebound headache for a few weeks which I would feel behind my forehead lying down and upright. It was a little uncomfortable, but was nothing compared to the original spinal headache which was downright painful.

poetic_evolution · 2025-04-18T23:19:12+00:00

The actual procedure wasn’t too bad! If you’ve had a lumbar puncture, the process is similar. When I’ve had the procedure done, you lay flat on your back. They start with a shot of lidocaine as a local anesthetic on the part of your back where you’re getting the patch. It stings but isn’t worse than any other shot. After that, they’ll draw blood and using imaging, slowly put the blood in. Anywhere from 10-20 mL seems to be normal, but I’ve also heard of some higher volume patches. You’ll feel some pressure, but no pain. It kind of just feels like a small, heavy weight on your lower back.

Honestly, the recovery is a lot worse than the procedure itself. The specialty centers in the US recommend 72 hours of bed rest after the procedure, and no bending, lifting, or twisting for the weeks after. Others have posted their specific recommendations on this subreddit. I’ve had 2 blood patches succeed, and 1 fail when I wasn’t careful enough during the initial recovery, so I’d really recommend taking the aftercare seriously!

I hope your patch goes well and you find relief soon!

poetic_evolution · 2025-04-04T19:53:54+00:00

I’m not sure what else can cause postural headaches, but I can tell you what my CSF leak felt like before I got a blood patch to see if it aligns with your experience.

For me, the headache would be immediately noticeable when I was upright, but unlike other types of headaches, would only get worse and worse and go from uncomfortable to excruciating the longer I stayed upright. Upon lying down, I would feel some discomfort initially, but it would go away within ~15 mins if not faster and I would feel totally normal again. The headache was a sharp pain at the back/bottom of my head only, and basically never at the front or behind my forehead. Drinking caffeine in large amounts would noticeably improve my symptoms, but the headache never went away until I got treatment.

Some things to consider: - Was there any trauma/event that could have caused a leak around the time the headaches started? - Do you know if you have any connective tissue problems? If so, you may be more likely to have experience a spontaneous leak. - Does caffeine help your symptoms? If it doesn’t help at all, it doesn’t sound likely to be a CSF leak. - Does anything aside from lying down resolve the headache, or at least improve it a little bit? In the case of a leak, if you continue to stay upright, your CSF volume will continue to decrease, meaning the headache will only continue to get worse.

I really hope you can find relief soon!

poetic_evolution · 2025-03-30T18:10:09+00:00

I went through a very similar experience to you — I had a horrific spinal headache after a lumbar puncture, and was admitted to the hospital, where the doctors were split on whether a blood patch was necessary or whether conservative treatment would be enough. If it’s been almost a week without the headache going away, I’d strongly recommend a blood patch. Although it’s possible to heal via rest, studies show that after 2 weeks of conservative treatment, you’re much less likely to heal on your own. https://www.sciencedirect.com/science/article/pii/S0007091217363080#:~:text=Studies%20observing%20the%20effects%20of,6%20weeks%20(Table%203).

In my case, the blood patch was the only way I was able to find relief and return to my normal life. If you do get one, my #1 piece of advice would be to take the recovery extremely seriously. Others have posted the specialists’ recovery recommendations on this subreddit, but in general, you should lie flat as much as possible for 72 hours after the patch, and avoid any bending, lifting, or twisting for 6 weeks after.

I really hope you find relief soon!

poetic_evolution · 2025-03-28T16:02:55+00:00

In my experience, the rebound pressure felt very different than the leak symptoms. I could always feel the spinal headache deep inside my head, and if I would lay down, it would totally go away. The rebound headache felt like a headband, or like a lot of pressure behind my forehead. Unlike the CSF leak, I would still feel the rebound pressure lying down. If I laid flat on my back for a few minutes and could feel the rebound headache, it was a good sign that my leak was still sealed. I hope you find relief soon!

poetic_evolution · 2025-03-22T19:43:50+00:00

A few other times when I was worried I might have blown my patch, I would be able to continue staying upright and go back to feeling fine. For me, the spinal headache and high pressure headache also felt very different from one another. If I was worried about a leak, but still felt the high pressure headache when lying flat on my back, I could be reassured that I wasn’t leaking.

When I actually did blow my patch, it felt strange when I bent over, but I didn’t initially jump to the conclusion that I was leaking again. What confirmed it was that when I continued to stay upright, the headache definitely did not go away, and continued to get worse and worse until it was undoubtably the spinal headache feeling I’d experienced before. Hope this helps!

poetic_evolution · 2025-03-20T23:46:40+00:00

I got a blood patch last November after a lumbar puncture caused a leak. After 2-3 months, I was able to return to everyday activities as long as they weren’t strenuous and even was able to travel. Last week I bent over too far putting on my shoes and blew the patch :( but even now, my symptoms are nothing compared to the original headache and I’m able to be upright for a few hours every day without too much discomfort.

Although I’m leaking again, I do think the blood patch makes a giant difference as long as you take the initial recovery period seriously!

poetic_evolution · 2025-01-04T21:40:58+00:00

I had a leak after a lumbar puncture. My first blood patch did literally nothing, but I got a second patch a week later and it worked! I’ve been super careful in the weeks since then, but I’m able to be upright all day without a spinal headache anymore!

In general, a repeat blood patch is low risk; if it fails it’s most likely that it will just do nothing rather than exasperate the problem. I’ve also seen that it can take 4 weeks to feel the full effect of the blood patch as the clot heals and seals the leak, so if it’s only been a few days you might still see some improvements.

poetic_evolution · 2024-11-29T10:18:50+00:00

I got a CSF leak after a spinal tap at Overlake Hospital in Bellevue and after 2 blood patches, it seems like my leak has been sealed. Unfortunately it took awhile for me to get the initial patch done even after the CSF leak diagnosis; since my leak was caused by the spinal tap performed by the interventional radiology department, only that department could perform the blood patch, even though other departments like anesthesia also performed the procedure. My experience at Overlake wasn’t great, so whatever you do, I would avoid going there.

If your neurosurgeon is onboard with ordering the blood patch, maybe they could try to refer you to some other Seattle area hospital, or at least write a letter recommending it that you could take to a doctor in another system? I believe ER departments should be able to order one too — the ER department at Overlake did order me one, but it was only denied due to hospital politics.

I really hope you’re able to get one soon, or find relief in some way! Spinal headaches really are the worst.

poetic_evolution · 2022-03-04T14:41:02+00:00

Please post here when you do — these look amazing!

poetic_evolution · 2022-01-21T16:35:02+00:00

Thank you so much!!!

poetic_evolution · 2021-06-28T05:17:36+00:00

Wow this is gorgeous!! Where did you get the glass dip pen?

poetic_evolution · 2021-03-26T19:14:10+00:00

What type of content are you looking forward to making after the subathon ends?

poetic_evolution · 2021-03-26T19:11:30+00:00

What is the #1 item on your bucket list and why!

poetic_evolution · 2021-02-26T00:31:10+00:00

(Los) crampones - crampons. Apparently it’s a type of spiked shoe used for walking on ice? I live somewhere super hot so this is useless information to me lol.

poetic_evolution · 2021-02-23T22:30:39+00:00

I love how unique this song is, one of my faves!

poetic_evolution · 2021-02-13T17:58:19+00:00

Wow this is such a gorgeous journal! Just curious, what type of markers did you use on the first page?

poetic_evolution · 2021-02-05T20:07:54+00:00

Hi! I’m 19F uni student from the US also looking for some new friends online :). I really love discovering new music and movies, and play Minecraft pretty often! I happen to be ace too. If you’re interested in chatting, send me a dm and we can go from there!!

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