Please tell me about your post-lumbar puncture experiences.
November 23, 2018 7:04 AM   Subscribe

I had a lumbar puncture on Monday (11/19), and my recovery has been . . . not great. Headaches, nausea, weakness and fatigue, clumsiness and foggy thinking, and just generally wanting to lay in bed forever. When does this end?

I was told by my doctor and the nurses that did the procedure that I would have a headache that lasted for a day or two. I definitely don't have the head-splitting migraine they warned about, but these symptoms are still pretty debilitating, and caused me to miss work (I'm at work today for the first time - Feds don't get today off). I called the hospital where they did the procedure after day 3 of suffering, and they told me to go to the ER. The ER doc told me this was pretty normal, and fixed me up with Tylenol 3 laced with caffeine, and said this could last another three to four weeks (!!). I'm seeing some slow, incremental improvement, but still feeling pretty crappy. I'm looking for your experiences, and some comfort and reassurance, if you have any to offer.
posted by backwards compatible to Health & Fitness (10 answers total)
I'm sorry that you're going through this.
I had an epidural that resulted in headaches, dizziness and wanting to sleep all day. It turned out that the "plug" wasn't done correctly. I went to ER on day three. The fix took a few minutes and all symptoms disappeared.
I hope that you get relief and are feeling better soon.
posted by jennstra at 9:16 AM on November 23, 2018 [1 favorite]

I had a spinal tap earlier this year. I only had the headaches, but I noticed they came when I was sitting upright. I couldn't last more than 45 minutes before needing to lay down again. I pretty much just forced myself to lay in bed for days, and kept testing my recovery by how long it took for the headache to appear if I decided to sit upright again.

I ended up not drinking any caffeine or taking any medicine, and in a week I felt fine. I would say that if you are seeing improvement, whatever you are doing, just keeping doing it. The most important thing is to NOT PUSH YOURSELF TOO HARD if and where you can help it. I had a friend go grocery shopping for me, for example.
posted by adelaide at 9:41 AM on November 23, 2018

First: I'm not a doctor, but I do have a medical condition for which lumbar puncture is a critical part of the diagnosis, and for a while I followed some support groups where many people discussed their LP's.

This does not sound normal to me, and I would see if you can talk to another doctor about it. I mean, the symptoms are normal, but not for them to last so long, and certainly not another 3-4 weeks. In particular, you may want to ask about whether you may have a CSF leak and whether a blood patch would be appropriate. This is a fairly standard treatment when you have symptoms like adelaide describes, which indicate a likely CSF leak (due to the puncture site not healing/closing back up completely). If lying down gives you relief from your headaches, I would pursue this.

The fact that you were physically able to go to work suggests maybe this is not what's going on with you (as the headaches from low intracranial pressure are usually excruciating), but I think it's worth discussing with a neurologist, as maybe you have low pressure but not crazy low pressure.

I was fortunate in that my lumbar puncture went very well (possibly helped by the fact that it was literally my neurosurgeon who performed it, not someone inexperienced) -- I mostly rested for a day and a half, and then I was fine afterwards.
posted by ktkt at 10:05 AM on November 23, 2018 [1 favorite]

Does your headache feel better when you lay down? If so then the problem is that the puncture in your spine didn't seal all the way. The fluid that normally keeps your brain suspended is leaking out and causing your symptoms. It's just not leaking out fast enough to be as extreme migraines you were warned about.

If you try not to move around too much and stay hydrated it should slowly get better. Otherwise the quicker solution is what's called a "blood patch" where they take some of your blood that they inject over the site of the puncture where it coagulates and helps seal the puncture while it heals. I'm not a doctor but that's what I would ask for were I in your shoes.
posted by VTX at 11:21 AM on November 23, 2018 [1 favorite]

Thanks to you all. The headache does get better when lying down, I should have mentioned that. I'll be call and talk to the doctor on Monday, but I had to leave work early because I just couldn't manage a full day. I've got a full weekend of rest ahead, at the very least. Maybe it will resolve on its own.
posted by backwards compatible at 12:42 PM on November 23, 2018

It's a spinal fluid leak and you need to stay horizontal to take the pressure off it so it can heal up. If you don't it can become chronic or you might need a blood patch, which is not without risk. Try spending 48 hours laying flat or even slightly head down except when you get up to use the bathroom. It's worth doing this to avoid the long term complications which can be really suck-y.

Call your doctor again if your'e not feeling substantially better after that.
posted by fshgrl at 2:41 PM on November 23, 2018

I had a LP in 2006 or so after being admitted to a (large teaching hospital) ER after collapsing. I think the procedure was not necessary at all and was done merely to give trainee doctors practice. I ended up spending about 4 days in the hospital afterward with splitting pain in my head and basic inability to do anything (unrelated to the reason I was in the ER in the first place). Then the site of the LP itched more or less constantly for the next, I dunno, 5 years or so. It had become such a part of my everyday life that when I finally realized that my back wasn't itching I couldn't remember when it stopped exactly. It itches intermittently if I think about it, like it suddenly started doing now as I type this, but I think that's more mental than anything.

So yeah, my experience super sucked.
posted by Hal Mumkin at 3:10 PM on November 23, 2018

That sounds eerily like what I had post surgery (1999-ish)

The great part was no one w the medical expertise seemed able to guess the issue until after dragging myself back to the hospital and having to lie down on the floor while waiting in the waiting room.
posted by disnchntd at 5:30 PM on November 25, 2018

Update: I lay in bed all weekend, and I am about 60 - 70% better. Still very weak and achy, and get nauseous easily, and curiously my back has started to hurt more than it was earlier. But the headache is gone, thank god. I am seeing slow improvement every day. Thanks to you all for your good advice and commiseration.
posted by backwards compatible at 4:35 AM on November 26, 2018

If you're still sick or having back pain you should go back to the doc and stay laying down. You don't want to get an infection or any lasting damage.
posted by fshgrl at 2:33 PM on December 1, 2018

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