Logging here the daily gauntlet of how my symptoms present and how they progress throughout the day
Mornings
- Wake between 6.00 am - 7.30 am. Immediately upon waking my brain will feel relatively clear. However, once I've got out of bed, gone for a pee etc there is a pressure which stems from the back of the brain and extends to around the sides of the temples. Body feels weak, low motivation.
First Meal Of The Day
- Doesn't seem to matter what combo of carbs, fats or proteins I eat, almost always the same result. As I'm eating, the pressure/swelling feeling in my brain increases dramatically. I also get a very strong clouded feeling where my spatial abilities and cognition are severely impacted.
The Hour(s) Which Follows The First Meal - What I Call "The Danger Zone"
- As I finish the last bite of the meal, I just sit, sometimes with my eyes closed, and give ten minutes for digestion. During this period I have learned to avoid reading (and even listening to podcasts/radio if the pressure is really bad). The reason for avoiding these activities, is they can quite literally crash my brain. The very first time this happened was three days post cessation of taking propecia at 0.25mg for four days. It was the first time I thought something was seriously wrong from taking the drug. Prior to this, nothing like this had happened to me in 32 years of life. So, the first time it happened, I was sat eating porridge and scrolling through Twitter on my desktop computer when a feeling like my brain was being pulled out of my head happened. I couldn't read the words on the screen and I literally stood up away from the table to try to gather my bearings. Felt traumatised afterwards.
- This happened to that severity again on Monday this week (28 May). Not during eating but about ten minutes after. I stupidly was reading on my phone whilst listening to the radio. Suddenly, a VERY intense pressure swelled in my brain, I dropped my phone on the table, very nearly blacked out, screamed out "ARRRRGHH" loudly, little white specks were in my vision briefly. Scrambled to turn the radio off (was only a man talking, no music, still felt insanely stressful in that moment to hear any noise). Nearly called an ambulance. I will refer these from now on as "brain zaps", for shorthand.
- Those are the two most severe instances of post eating brain zaps. Usually, when in "The Danger Zone", it is an intensification of the symptoms listed in "The First Meal Of The Day" segment. I am at the point now where I am trying to avoid activity of any sort in the hour or two after first eating. Of course, this is severely debilitating and detrimental to my quality of life.
Mid-Morning to Early Afternoon
- As the hours pass after eating, I go on with the head pressure and startled type feeling (the longer the pfs is going on for me, the more traumatised I feel). Mercifully, I can start to read again and perhaps listen to the radio without fearing a proper brain zap. If I feel one approaching, I just close my eyes for a minute or so and maybe turn the audio down.
- In general, my brain feels mashed up. Approximately described, it feels like a severe hangover when dehydrated type feeling though this isn't really accurate. It also is what I'd imagine the brain would feel like after a physical head injury.
Late Afternoon - Early Evening
- Generally a little bit clearer, not as much head pressure. This period can be a time where the bleak, shocking depression comes in, depression unlike anything I had experienced before pfs. It is as though these is no pleasure center in my brain at all. Each minute to the next has no frame of reference, it's as though I am losing who I am, where I am. Have to take deep breaths through the nose to calm the anxiety.
- Eating in this period is better, doesn't produce as much danger as the first meal of the day does.
Late Evening
- Generally my best period of the day, generally feel the least stressed in this period. The window between around 9.00 pm - 10.00 pm I may try to play a gentle video game, though it is still difficult, head still spinning while playing and some motion sickness. Difficulty concentrating.
- Will get incredibly fatigued around 10.00 pm - 11.00 pm. This is good in that I will fall asleep within five to ten minutes. This is the opposite of before pfs, when my whole adult life, I generally found it difficult to fall asleep but would then sleep deeply once I did.
- Wake up throughout the night most nights. Sometimes only once then shortly fall back to sleep but at its worst, will wake several times and spend periods of time lying awake.
General Symptoms Which Aren't Time Of Day Specific
- Freezing cold hands and/or feet throughout most of the day.
- Nose and area around eyes feels squishy, soft.
- Tinnitus
- Vertigo to varying degrees when out and about walking. Worse in the first half of the day.
- Flaccid penis feels like rubber most of the day, glans sometimes pale yellowy or greenish colour. Can still get an erection from mental/visual arousal however, erection is same size as pre-pfs, glans sometimes feels slightly less filled with blood.
- Very sensitive to loud noises or even quiet ones which are unexpected.
- Increased light sensitivity.
- Weight loss from eating severely reduced calories again.
- Urine sometimes stuck in urethra, needs extra time to squeeze out.
- General feeling of physical weakness.
- Very low tolerance to anything remotely stressful.
- Brain that feels like it's been smashed apart then taped back together again.
- General fragility.
