My symptoms started in January 2021 with intermittent but extreme head pressure (not pain) that would make it extremely difficult to think clearly and accomplish basic tasks in particular those with an intellectual focus. I additionally noticed muscle twitching (fascilations) in my arms and legs at around this time as well. Over the course of the following months, I started to encounter these episodes of head pressure and intermittent episodic brain fog more consistently where I was generally experiencing these “episodes” on 3-4 days out of the week with increasing intensity and persistence over time. The “episodic” nature of my illness is key here as in-between the instances of head pressure, I was able to largely regain near 100% of my baseline daily functioning for the most part. However, as time went on and I got closer and closer into Fall 2021, I started to notice that I was not making complete recoveries in-between my episodes of head pressure, and the frequency of the head pressure episodes and brain fog was increasing.
In late september 2021, I had a panic-attack like episode and migranous-like dizziness attack simultaneously about 48 hours after I went home after my repeat cerebral angiogram. During this episode, i was extremely disoriented, dizzy, hyperventilating, and confused to the point where my girlfriend had to call 911 for me. The rest of the evening is a near complete black-out memory wise for me, but after having some brain imaging done to rule-out stroke, I was diagnosed with having a migraine (despite the fact that I had no headache) due to an aura-like sensation that I had before the dizziness/panic attack where I was unable to read any kind of text or written language. After this particular episode, my brain fog and head pressure became near-daily occurrenecs and I started to notice a more consistent decline in my overall mental abilities. I additionally started having the now-chronic sensation of living in a waking dream and not really being 100% aware of everything that is going on. That’s really the only way that I can successfully describe it – I constantly feel as though I am living in a dream and my thoughts are slowly moving through molasses. I guess another way to describe it is living life on complete autopilot. I constantly find myself doing things and going through life with the sensation that I am not 100% in control and my mind wakes up in the middle of things and spontaneously becomes aware.
After this episode of dizziness and disorientation in September 2021, I started to have episodes like this happen regularly alongside intensification of my brain fog. Moving into the winter of 2021, I was no longer completely recovering between head pressure episodes, and I was really never a day without some kind of symptoms, be it dizziness or head pressure. My “dizziness” isnt actually dizziness per se, but a constant feeling as though I am not getting enough blood to my brain, and an overall woozy feeling that’s associated with that. These dizziness “episodes” come on relatively suddenly over a period of about 30 minutes to an hour and last for at least the rest of the day, or multiple days at the most. During these episodes, it is extremely difficult to do anything at all, and I really can only lay around or look at my phone while I wait for the episode to pass.
In December 2021, I started to notice my first memory disruptions, where towards the end of any given day, I found myself having a difficult time recollecting what I had done earlier in that day, or what happened in the days previously. This has continued alongside the brain fog, dizziness, fatigue and head pressure throughout 2022 while continuing to worsen.
In general, I am constantly alternating between three different states:
- Dizziness/Lightheadedness Attack: feel a funny feeling in my head building over 30 minutes of time and then dizziness and disorientation lasting for several hours to several days. During this time, it is extremely difficult for me to do anything and I have noticed speech issues during these times as well. During these episodes I am not in any pain, just the dizziness
- Headache: pounding headache that starts in the back of my head, worsens on standing up for a few seconds with my heartbeat, or stabbing headache on left side of head. I can typically at least act normally during these episodes, but I am barely functional so I am not certain whether or not they are migraines
- General fog without headache or dizziness: this is when I am at my most functional, where I am not having a dizziness/lightheadedness or headache attack, but still in considerable brain fog/having memory difficulties, feeling like everything is a dream.
Some other things that I have noticed and other symptoms:
- Extremely poor appetite. I normally have to force feed myself at various times throughout the day, because otherwise I would not have any appetite.
- GI disturbances – very difficult to flush stools, extreme bloating and gas, frequent undigested food in stool, having 3-4 bowel movements a day. I have seen a GI and had a colonoscopy and tested negative for most serious GI illnesses, including parasites. I have not followed up.
- Random pain in the right side of my chest
- Lost all my interests in doing basically anything
- Random and occasional pain in joints throughout my body. I had a negative rheum workup.
- still have a sex drive, but sex isnt as pleasurable lately and i have definitely noticed an overall reduction in drive.
Things I have tried:
- CoEnzyme Q10 – 300 mg
- Zoloft – 25 mg
- Magnesium 250 mg
- PQQ – 20 mg
- Thiamine – 2000 mg
- Riboflavin – MAKES DIZZINESS WORSE
- Methylfolate – MAKES DIZZINESS WORSE
- Vitamin B12 – no change
- Selenium, Iodine, Zinc, Copper
The combination of Zoloft, Coenzyme Q10, PQQ and Thiamine made the most significant difference for a while (worked decently and had like a 30-40% reduction in fog) but then I stopped after the zoloft caused genital numbing. Went back on and did not have the same benefit as before, despite being on for similar amounts of time.
