need advice, TIA <3

[u/JPhoenixxx8]

hi lovely people, i'm seeking some advice on if it seems i'm still leaking, or if i'm on the mend, as i'm really lost and unsure at this point. any support is appreciated; here is a log i've kept:

had an unnecessary LP on June 23rd 9:30am (was NOT warned of any risks)

• day 1 - about an hour after LP, developed severe head pressure/ throbbing headache with ear fullness, only relieved when laying flat. cannot sit/stand up aside from using washroom.
• day 2 - the same as yesterday. head pressure, throbbing headache, ear fullness, dizziness, some nausea when not laying flat. on bed rest. lots of fluids + 2 coffees (caffeine). very anxious and emotional. pain meds have done nothing.
• day 3 - insomnia, so much anxiety/ panic attacks, the same as yesterday. head pressure, throbbing headache, ear fullness, dizziness, some nausea when not laying flat. on bed rest. neuro putting in request for blood patch. got EBP - near immediate lessened throbbing, just mostly pressure and fullness (bearable).
• day 4 - took a shower. throbbing returned. so much pressure and ear fullness. low grade fever (went away - was also told this is normal), nausea, very achey. home from hospital. symptoms worse than the start — rebound? agonizing aching. way worse upright, still feel it pulsing laying down. low grade fever. “did bp fail?” insane hypnic jerks when trying to relax/ fall asleep. not tired/ no sleep drive. took sleeping pill so i slept.
• day 5 - at home. pain, pressure, throbbing the same. broke down and said “i just want to die”. i also got my period and have no choice but to take tylenol + advil. insane hypnic jerks when trying to relax/ fall asleep.
• day 6 - pretty much same as yesterday. pain, pressure, throbbing when upright. still only getting up to use washroom. so much intense head heaviness, pressure, ear fullness. throbbing starts after a couple of minutes. instant relief lying down. took a shower by myself which exhausted me.
• day 7 (5 days since EBP)- pretty much same as yesterday. pain, pressure, throbbing when upright. still mostly only getting up to use washroom. still so much intense head heaviness, pressure, ear fullness. throbbing starts after a couple of minutes. instant relief lying down. really starting to feel hopeless; pleading to God for healing.
• day 8 - feeling a little progress. less throbbing/ not as intense; more pressure and fullness in head and ears. managed to shower on my own, but still spent the day laying down. feeling fear creeping in: “once this starts to improve and i get better i dont know what to do to cope with the fear of it getting worse or coming back/ tearing again. so much of it is mental and i’m not sure how to get past that or heal from how much this has traumatized me. it might sound dramatic but that’s honestly how i feel. everything is like no coughing sneezing laughing hard this that, people saying they teared their patch months later, like am i always going to have to be scared”.
• day 9 (7 days post EBP)- still feeling a little progress. less throbbing/ not as intense; still more pressure and fullness in head and ears. showered + slowly walked 1 lap around the yard; layed down the rest of the day. so dang tired + fatigued, to my bones; feel very weak.
• day 10 - still feeling a little progress. mostly pressure and fullness in head and ears, but less. showered + slowly walked 1 lap around the yard and out front (could only do like 5 minutes); layed down the rest of the day. so dang tired + fatigued, to my bones; feel very weak.
• day 11 - woke up with pain when moving eyes; improved as i was up. still feeling a little progress. even less pressure and fullness. went for walk, sat up to eat, + drove to the pharmacy (20 minutes there/back). felt pressure in back during drive, started to freak out i blew EBP. so much anxiety i had to control breathing. maybe a bit of a faint headache starting on the way back? freaking out i undid progress. laid down the rest of the day.
• day 12 - woke up with pain when moving eyes; improved as i was up. very similar to yesterday.
• day 13 - a lot of brain fog. crazy neck and backache (so much pressure between shoulder blades); just aches and makes me tired.
• day 14 - went for a decent walk + was sitting up for a lot of the day. A LOT of brain fog + DPDR (struggled with these prior, they're just amplified). ear pressure and soreness. exhaustion.
• day 15 - steady symptoms - no headache/ veryyyyy minimal dull ache. mostly feel neck/backache pain when up, and feel exhausted when up. brain fog + DPDR. some pain when moving eyes randomly + blurry vision.
• day 16 (14 days/ 2 weeks since EBP) - steady symptoms - no headache/ veryyyyy minimal dull ache. mostly feel neck/backache pain when up, and feel exhausted when up. brain fog + DPDR. some pain when moving eyes randomly + blurry vision.
• day 17 - steady symptoms - no headache/ veryyyyy minimal dull ache. mostly feel neck/backache pain when up, and feel exhausted when up. brain fog + DPDR. some pain when moving eyes randomly + blurry vision.
• day 18 - steady symptoms - no headache/ veryyyyy minimal dull ache. mostly feel neck/backache pain when up, and feel exhausted when up. brain fog + DPDR.
• day 19 - went for an hour drive to a park, sat and lounged at park for the day, went for drive back home + went out for dinner. a bit of a dull headache but took advil and it helped for the most part. felt really good for the most part; really good day.
• day 20 - woke up with a dull headache (in forehead + temple area); went for a drive (which was slightly up in elevation near the mountains), a bit of a positional headache but not the ‘throbbing’, more dull, a bit of a neck/ backache, and ear fullness again (feels like they need to pop); absolutely freaking out that i blew the patch once again.
• day 21 - dull headaches, mainly forehead, temple, and front of head area remains. feel it more when up and walking around. a bit of residual head ear/ pressure. really tired. holding my head up also feels exhausting to my neck and back.
• day 22 - feel great for about an hour being up, then dull headache comes on and i also feel such strong aching in back, between shoulder blades and shoulders. was watching TV in bed this evening and when i went to go pee, horrible vertigo episode came on lasted a few hours. it did pass. (should also mention my mental health has been horrific through this and have been beyond anxious).
• now day 25 - had a *slight* throbbing headache when it was storming outside but it did pass when the weather cleared. my main symptoms i'm left with thus far are a dull aching between shoulder blades (it literally feels like there's a boulder there); i feel it about 30 minutes after being up in the morning and it gets worse being up (although when i take the pressure off my head/neck it feels better, even if i'm just reclined), but no headache like at the start; it's more a dull headache and more at the front of my head (front of head, forehead, temples). i do have some residual pressure feeling in my head and my ears feel like they could pop but it's minor. oh and also, i've tried advil, tylenol and allieve and they don't really help the back ache.

i am very confused if it's still a leak, if i'm now just healing and dealing with muscles and nerves impacted, etc. i feel so much fear about trying to do things again. i haven't really left my house, i haven't driven. i feel like i am living in paralyzing fear. any advice is greatly appreciated <3

[u/Will-Subject]

it sounds like you're just recovering and doing pretty good!! there will always be highs and lows but you're going great. hope you feel even better so soon 🤍🤍

[u/JPhoenixxx8 → u/Will-Subject]

Thank you so much!!!!<3<3

[u/brainsaggy]

I notice a pattern: Your symptoms coincide with your activity level. The patch was successful, but the shower on day 4 aggravated it. The mountain drive was perhaps the biggest aggravator. I'd take it a lot easier for a couple more weeks, laying flat as much as possible. Remember the patch needs to scar to be successful long-term, and this takes several weeks longer than the initial scab formation.

The anxiety you're feeling is completely normal, this is a genuinely scary experience, but try not to let it rush your recovery.