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Day 006 of the Multiple Sklerosis Study
(Compound Day 3) Sunday on 2024-09-08
Groningen, Netherlands (GMT+1)

• BP = blood pressure
• HR = heart rate
• SB = (study bound) meal controlled for the study

07:30 Wellbeing (Pre dose)
07:45 Physician task (Neurological examination)
08:15 ECG (3x measurements])
08:15 Vital signs (BP, HR)
08:25 Blood sampling (PK: Sample 13)
08:25 Transfer bloodtubes
08:25 Cogstate (Neurocognitive Test Battery)
09:10 Breakfast (Start)
09:40 Dose (RO7268489 or placebo)
09:40 Dose check
09:40 Water fast (Start)
11:40 Water fast (Stop)
11:40 Morning snack
13:10 Lunch
13:30 Bowling
15:00 Afternoon snack
17:30 Dinner
19:00 Wellbeing
20:30 Evening snack

Water intake: 6 (two tea, two compound)
07:05 - 12:00 headache going from a 4-7
14:00 - 15:30 headache going from a 7-9
07:17 - Now stiffness / soreness in my muscles

11:46
I had a headache the entire morning. It became worse and worse. For some reason, it only stops when laying down. Maybe it's a vitamin D deficiency caused by not being outside as much? Maybe it's the air here being super sterile, with no humidity, and low tmeperature. Maybe it is my new cycle, or the stress of so many appointments in a day? However, laying down horizontally does the trick every time. Whether eyes closed or open, outside, sitting or standing, as long as I'm upwards my head hurts? Very odd!

I was also just informed that we CAN get paracetamol even during this study. Let's hope my headaches are no more!

15:30
Thanks to this nice commentator @gabriel and one observant assistant, we noticed that my headaches are most likely caused by a hole in my spine through which spinal fluid has been leaking into my back since the day of the lumbar puncture. Apparently it “sounds way worse than it is.”

Since the headaches began before I even took the compound, many passed it off as being due to the environment, stress, or even the dry air. However, checking through my own recordings and an assistant doing the same with theirs, we noticed the headaches only began on the day of the CSF sampling (lumbar puncture). That day as mild headaches, the day after as even strong headaches. Yesterday evening I think it was the strongest, where I couldn't even talk to an assistant about my wellbeing due to not being so well. The only reason I didn't ask for a painkiller was because I thought we weren't allowed to get one.

The assistant who was only supposed to watch us during bowling figured this out and explained what can be done in such a case. I'm a bit surprised none of the assistants who were doing my wellbeing and heard about or saw my symptoms didn't realize this. My headaches are getting worse each day and disappear the moment I lay down. “Textbook example of a lumbar puncture headache” The assistant who came to watch us bowling said. She jumped to the defense of all the assistants who didn't notice, however, and said that many don't know we had a lumbar puncture. She explained that there is a procedure capable of closing the hole in my spine, and that she doesn't know if it may also close itself. As the next lumbar puncture is on the 12th of September, sadly the doctors can't just use the same, apparently still open, hole. It would need to be closed either way.

To be continued...