u/kityena

Hey! I wanted to ask if anyone ever felt worse after a blood patch? I just got mine 11 days ago, and everything has been so much worse since (minus the first few hours).

Right after the patch I felt great. I felt joy for the first time in months (after my lumbar puncture), the world felt more colorful and it was like my sense of smell was better? I did get massive pain in my lumbar region from lying flat after the procedure, but during the night it just completely disappeared.

On day two, I got a headache in my entire head while lying down (non-positional, which went away on the third day), then had a pounding headache when getting up that I've never felt before (my low pressure headaches have always felt like a pull in the back of my head).

But since day 4, my symptoms have been insane and all over the place! The low pressure headache seems to be back, but only sometimes. I also get a new, very strong burning sensation in the back of my head - sometimes it starts after being upright for a bit, (but it doesn't go away after lying down), sometimes it starts while I'm lying down. Today it even started after I woke up in the morning before I got up! Occasionally, when I get up, my head feels like it's about to float away. I have pressure in my sinuses and forehead, but it doesn't get better when I lie down, so not rebound? I get pulsatile tinnitus a lot. I feel nauseous all day long, too. My brain fog and memory have been impacted by the leak, but now they're even worse. One day I had burning + what felt like a low pressure headache, then I took a Tylenol, expecting possible relief from the burning, but the low pressure headache went away too (???). My ears pop and my tinnitus is loud, and the phonophobia I hadn't had in a while came back.

I just have NO idea what to make of all this. Before I had the blood patch, my issues were impacting my life, but not unbearable. I had brain fog and memory issue and a 3-4/10 pulling headache that was better on some days and even went away every once in a while. I occasionally took walks with minimal pain and even managed to go to a shopping center for a few hours without any pain at all. I thought the blood patch might be the final push my body would need to get back to normal.

But now I feel SO much worse, and my symptoms are extremely confusing. I can't even tell whether or not I blew my patch. I am in a very bad spot mentally, I keep crying.

Today I had a blood patch at our local clinic with a neuroradiologist, and the way it was handled completely messed with my mental.

I'd been having positional headaches (or, well, more like pulling sensations in the back of my head) since having a lumbar puncture 5 months ago, and I finally went to the radiology department of our local hospital for a BP today. I was expecting to have a conversation with the neuroradiologist about the procedure, maybe with him telling me what to expect, informing me about possible side effects, maybe a "do you have any questions"... or at least something like that.

Instead, they brought me in, the neuroradiologist literally opened with "this could make the leak bigger, this could lead to infection, this is exposure to radiation" before telling me to take off my jacket and lie down so they can take my blood. I had already been nervous before, but man, what the heck. I told him that I'm worried I might have a UTI, he said it doesn't matter, no infection risk. Let him know I'm a little worried about the radiation, since I'd already gotten a lot just last month, he completely downplayed how much radiation I had been exposed to. At that point I freaked out, he angrily asked me "do you want the patch or not?" and I asked him if I could think about it for a minute.

Doc said with my minimal symptoms and clear MRI I don't have a leak (I'm also not 100% sure, but my regular neurologist said empirical blood patches are a normal thing), and he'd advise against getting the patch... but eventually, I decided to go through with it. As I was lying there in the CT scanner with the doctor placing the needle, I asked him "so, how long do I have to lie down afterwards (here, in the hospital)" and he responds with "you don't have to lie down at all, you go home and that's it".

I legit started crying at that point. You keep hearing about non-specialists being a little too careless when it comes to after-patch care but I don't think I've ever come across a single person who had their team/doc/radiologist tell them to not lie down for a single hour after a blood patch. I think if he had said that before he placed the needle I'd have gotten up and left. He injected 15ml and immediately stopped when I said I experienced very very very mild head pressure.

After asking about lying down afterwards again I was allowed to lie on a hospital stretcher for an hour before being dismissed without any further instructions. Took the taxi home and am now lying flat with back pain.

I'm not entirely sure what the point of my post is, but I just needed to get this off my chest. I'm still extremely nervous about how this has been handled, and my health anxiety keeps telling me they might've handled everything else badly too (like, I don't know, using non-sterile needles or not disinfecting enough).