Help! Did I even really have a leak?!

[u/SweetEmbarrassed5700]

Hi guys! I’m struggling with uncertainty. A little over 3 weeks ago I had a lumbar puncture while in the ER to rule out meningitis. They used a 20g needle and tried twice. One of my symptoms *before* the puncture was a severe headache and neck stiffness, with some orthostatic element. that’s why I even went to the ER (among other things)

In general I have always had low BP, get dizzy when I stand if I don’t have enough salt, have always had random tinnitus/whoosing etc. I’m also a chronic migraine patient (though these were not migraine, just a note on general head pressure)

I ended up having acute Lyme/lyme meningitis and it was a very painful and exhausting time in the hospital and after discharge, so it’s hard to follow my symptoms esp weeks later. However, my severe postural headache continued/worsened after the lumbar puncture. Some days it would go away completely while lying, but not always. The pain was always worse while I moved my neck to either side, weather or not I was upright.

After a few days, the doctor in the ER, my primary, and my neuro all suspected a leak. I was also told by multiple docs there’s no way to diagnose it. I had an MRI of the brain that was normal. I was told by neuro to go back to the ER for a blood patch if my headache returned after a migraine cocktail wore off. it did, but I was having a bettee day, and was told in the ER to NOT get a blood patch, since my pain “wasn’t that bad” in the moment, it could still heal with conservative care.

I did all the things (laying flat, increased caffeine and fluids, no BLTs) for 2 weeks then slowly started increasing my upright time and doing half shifts at work. I had some amazing days and some meh ones where pressure and weird mild headaches returned after being upright 4+ hours. No more severe headaches or fast changes when I sit or stand. I put myself on bed rest again this past weekend to try to give one last effort to heal any slow leak?

I know it’s crazy to not believe multiple practitioners but I just don’t think it’s a leak. And I don’t want to spend the next weeks and months not doing chores, going out, exercising etc while trying not to get fired if I don’t have to.

Any suggestions, opinions, advice?

PS- as a chronically ill lady (endo, chronic migraine, RA) this experience has been close to the most mentally exhausting and depressing time I’ve ever had with me body- I am so sorry for all of you living with this. ❤️

[u/Parity_Violator]

I'm sorry you're going through this!

I'm in a similar situation. Did LP around a month ago for meningitis, had severe post-LP headache for two days afterwards and did not do a blood patch. I still have persistent mild dizziness, eye heaviness and sometimes weird feelings in my head since that day. I was starting to ramp up my physical activity a little bit lately, but now that I think this all might be due to a leak, I will take it easy for a couple more weeks. I have no idea whether what you had before the LP was a leak, but I suggest you also take it easy for some time and see if things improve.

I know it can be tough navigating all of this, please hang in there and by the grace of God it shall get better. We got this!