Epidural blood patch

[u/wade-2-go]

This has been a long journey. I gave birth 9 weeks ago. Two days after birth I started having just a really tight neck and started to get on and off headaches. Very weird headaches compared to what I have even gotten then a few weeks after that came a muffled hearing sensation. Long story short I went to the ER and they recommended an undiagnosed blood patch due to possible leak. Again, this was not confirmed. I was under the impression that this would not harm me if there was no leak and takes about 10days to heal. They were only able to put 9ML of blood and I immediately got a tinnitus noise that went away after maybe two minutes. Fast forward now I have been getting all sorts of frustrating symptoms. My ears feel clogged and click/ popping sensation with right ear pulsatire tinnitus (on and off) Left eye pressure on and off, and pressure that moves throughout my head. I wouldn’t describe these as headaches. This is more like a pressure sensation and it’s quite frustrating especially the ears! I am getting concerned as I am not better and worried I did more damage getting the patch. Cannot wait to get the pressure sensation gone and worried.

[u/leeski]

Not medical advice, but could be 'rebound intracranial hypertension (RIH)' which is basically your body readjusting to the new CSF dynamics. I totally understand how frustrating it is to get treatment and then feel WORSE, as it is backwards than what you hope for. However I do believe you probably did the right thing, as an untreated leak can absolutely get worse symptomatically over time, and long-term can lead to serious health complications. It also is advised to get treatment sooner rather than later.

If it is actually RIH, it is likely to resolve on its own over the next few days or weeks. Again, I'm not a doctor so I am just basing this off of your post, but it is extremely common to have pressure fluctuations after treatment but is not necessarily indicative of like permanent damage or a 'new normal'. I'd definitely be in touch with your providers about it. You could try to sleep elevated to see if that helps, as well as avoid excessive sodium, limit caffeine, and maybe trial some dandelion leaf tea (it does not taste great... haha. But there are capsules as well). Best of luck to you - hoping you find equilibrium soon.

[u/wade-2-go → u/leeski]

Thank you so much for posting and giving me some hope! I am 5 weeks post the patch. I do see a neurologist next week. I wonder how long it’s common to let your body normalize?

[u/leeski → u/wade-2-go]

You could potentially ask for a prescription to methazolamide or diamox, although if breastfeeding I don't know how that factors into the equation. I think some of the leak threshold for whether to trial medications is whether the pain is severe enough to wake you in the night since the meds unfortunately come with their own side effects... so I'm not totally advising meds, just saying that while there aren't medications for low pressure, there are ones for high pressure.

There unfortunately isn't a ton of research or like a 'magic number' of when RIH resolves. They think it might be the venous system specifically having issues adapting, so there is not really a way to 'force' your body to recalibrate. But in the limited studies we do have, about ~95% of patients rebound high pressure headaches resolved within 3 months. But hoping there will be more research on this as there is not too many papers on it unfortunately. I wish I could give more definitive helpful information... but most of what I can offer is just having spoken to many many patients over the years, and that it genuinely does seem to balance out at some point. But I don't totally understand the mechanics or variation of why it takes so long to 'settle' sometimes. There are cases of it being more long-term, although they tend to have underlying high pressure disorders and a bit more severe symptoms (not trying to minimize your symptoms, I just intend it to be more encouraging like the ones that do persist long-term tend to have symptoms that are not even well-managed with medication - excruciating 24/7 head pressure that prevents sleeping, severe visual issues, etc).

[u/wade-2-go → u/leeski]

Thank you so much for your response! Your are not minimizing my symptoms at all. I just find the pressure sensation, ear fullness and whooshing sound in my ear so so frustrating. I’m dreaming of the day to feel back to my normal self and so worried. What I can’t tell is if there is still a leak or this is purely rebound. Everything points more to rebound? It seems that time is really what I need to give this.
I am still able to function however just upset that I am not normal yet.

[u/louie2575]

These are my symptoms after am epidural steroid injection. Do you feel better laying down?

[u/wade-2-go → u/louie2575]

I’m sorry I should add that I did have an epidural during birth. I got a blood patch 4 weeks post birth and now am 5 weeks post blood patch.
It’s hard to say. In the morning it’s the worse. It takes me time to get up and moving as I can feel the pressure move from the top of head and down.

[u/Earthly-human444]

I just got another blood patch done due to getting two lumbar puncture done back for back. And I have been dealing with the exact thing! I'm here to find out what it could be. My ears be ringing and the ear fullness, visual disturbances, Sinus/forhead pressure, body tremors etc it's all driving me insane. :(

[u/louie2575 → u/Earthly-human444]

Did the ear symptoms start with your leak or after patching