The procedure was done early in the morning. The doctor told me upfront that caffeine reduces the following issues but that I’d be up on my feet after 1-3 days. And right after the procedure I felt alright. I was waiting outside, my spouse picked me up and I spent the rest of the day on the sofa. When I felt some headache coming up I just went to bed early.

The next morning was quite different though. When getting up the pain hit me so unprepared and hard, I nearly wasn’t fast enough to reach the bathroom before hugging the toilet for a while. Spouse went out to get me caffeine pills (“No need to get them right away, you likely wont need them” my doctor said) but they did nothing. Lying down was the only time I didn’t feel like my head is going to explode.
Walking bent over so my head was haning down turned out to be an acceptable way of moving. Eating was… challenging.
Within a few days, the physical stress and the caffeine pills made me sweat out all my Kalium so in addition to the pain my whole body started to shake unctonrollably. That’s when I asked my spouse to call an ambulance since I didn’t know at the time where the shaking was coming from. (And I live in a country where this whole ordeal only costs 75 €)

Because of the constant shaking the MRI wasn’t conclusive so the doctors decided to keep me in the hospital for a while and think about whether they want to give me a patch or not.
In the end they didn’t. Though they now knew I had a leak, they took so long to realize this, that it started to close on it’s own. I was then sent home. Took me another 3-4 weeks to be actually pain free.

A few things I learned:

• The intensity of the headache is related to your body type. Small, thin people are more likely to develop so called thunderclap headache (sounds a bit like your experience as well)
• If you need to combine pain medication and caffeine pills, ask your doctor about something for excess stomach acid
• If you start to get the sweats take care of your electrolytes
• If you feel lik the pain is not getting better demand a patch until they give you one. I felt so much like they really, really didn’t want to do a patch. But no amount of discomfort can make me go willingly through this amount of pain again.
• And the most important one: if there is even the possibility of you having ME / CFS don’t do it, unless it’s absolutely necessary and there’s no other way. In my case, we just could have waited a few months longer. I would have loved to know this upfront.