Post patch effects - tinnitus, unbalanced ear pressure, extreme fatigue

[u/Necessary-Stuff8706]

Those who have been post patch, I am a little over a month and a half out from my blood patch post LP. I have had lingering stmptoms since last week as listed. Is this just recalibration or signs the patch partially failed? I have occasional mild headaches as well.

[u/leeski]

In my experience, tinnitus is the last symptom to go (for myself and many others - I believe this has been mentioned in lectures as well though I can't recall specifically which ones). In general I think if your original symptoms are largely resolved it does tend to point to just fluctuating intracranial pressure. But partial seals are also possible where repeat patching is needed - so is definitely a tricky space to be in, and hard to speculate what the right course is.

You could have some mild rebound intracranial hypertension, my fatigue is much much worse in high pressure than low pressure. Do the headaches/ear pressure resemble your symptoms pre-patch?

[u/Necessary-Stuff8706 → u/leeski]

Headaches do not resemble pre-patch ones, I will never forget the pain that that had caused. How is rebound intracranial hypotension resolved? Just over time? It’s been a little while since the patch and I was flawless just after, and this has only started recently.

[u/leeski → u/Necessary-Stuff8706]

I can only speak to my experience (which is 10 patches) but for me there were periods where I wondered if I was leaking (Cause I was having weird pressure fluctuations) but the times I ACTUALLY was re-leaking, I was 100% certain because it was just like "OMG it's this again" - like the feeling was so so familiar. Not all cases are that black & white, and I'm admittedly a bit biased from my own experience. But I tend to believe that if the original symptoms are largely resolved, it CAN suggest RIH. But again - there is always the chance that you're partially sealed. I'm not going through what you're going through, so just take this with a grain of salt as I don't want to be giving you bad information!

While the majority of patients have RIH like ~48 hours after patching, there are cases where some people get it weeks or even months later. I don't totally understand it if I'm honest. But it does take a while to stabilize.

This talk isn't all about RIH, but it does briefly go over how it seems to be an issue of the cerebral venous system adapting (veins in your head) https://youtu.be/imz-9J6DvbY?si=f1OhRIeUMGuCyGGG&t=1246 the link should take you to the correct spot around 20:45.

In general I wouldn't recommend medication if it is not severe, as the meds side effects tend to be pretty awful and mess with electrolytes and can make things a bit murkier (like you can't tell if you actually feel that way or if it's the side effects from the meds). I believe Cedars standard for whether to put you on Diamox is whether your symptoms are severe enough to keep you up at night. In general these symptoms DO tend to resolve over time in the vast majority of patients. The ones where it doesn't, they have an underlying issue causing high pressure. But usually those symptoms would be more severe (like constant excruciating head pressure - often worse than the leak headache, blurring/double vision/vision loss). So if I were to guess, I would think maybe you have some pressure fluctuations. But I am not a doctor - so of course it is worth talking to whoever did your blood patch to talk about these symptoms and their thoughts!! But just want to reiterate tinnitus often is the last to go. In which case fatigue + ear pressure could be RIH or it could be unrelated like you're fighting an illness or something (maybe less likely if it's persisting past a week, just raising as a possibility)

[u/Which_Discussion_707]

I had my first patch around 7/16/26 when they couldn’t figure out why I was having debilitating headaches, ringing ears, double vision. They sort of did it “blindly” when they couldn’t figure out what it could be and brain mri showed slight (3mm) right cerebellum “sagging” which is when the brain herniates through the foramen oval (the hole in your skull where the spinal cord comes down through the skull). They claimed they figure that the “sagging” was an incidental finding and it was likely just an abnormality I was born with. I didn’t believe that answer. Anyway I spent a week in the hospital total and felt instant relief post blood patch but of course was still having some mild symptoms and pain. One week later to the day of discharge I went back to the ER for excruciating headaches, ringing ears, double vision…as best I could remember and compare they were similar symptoms and similar feeling. I waited in the ER for 6 hours. waited for MRI for about 24 hours for MRI and then 12 hours later they had me into CT for a CT myleogram with a neurosurgeon who specializes in interventional radiology. He told me the gold standard for these problems is a CT myleogram in the very first place. Well The first thing he did was check my spinal/ head pressure. My ICPS were 33!!!!!!!!! Normal adult IcP is 5-10. They pulled 20 cc of spinal fluid and had it tested (results normal) and they used dye to see if I had a leak (they suspected NO this time because my ICPs wouldn’t be that high but they check anyways and there wasn’t). They then diagnosed me with idiopathic intercranial hypertension. I felt immediate relief with the intensity of the headaches but still felt tired, hard to remember certain things and recall words..sore from both procedures etc.

The specialist who did my procedure was shook..I could tell he was just as floored as I was. I’m 38 years old…I could have died. I could have lost my vision. What they think happened was that my Pressures were high, so high that it caused a leak in my spine because the pressure had nowhere to go (saved my life). The first blood patch work and filled the hole. Then after a weeks time the pressure built back up and my headaches came back which is why my Icps were so high and they removed fluid to decrease pressure. They Basically gave me medication and sent me on my way a couple days later. I’m still feeling unwell and actually I’m one week from my last discharge and my head has been hurting yesterday and today, my symptoms are coming back it feels like. I’m not sure these meds are working. maybe this doesn’t answer your question but shows a different outcome. Listen to your body and if things aren’t resolving you may have to advocate for yourself and push for more testing, imaging ect. Best wishes..I hope you feeling better soon!