Severe brain fog with ME/CFS, improved with antidepressants then relapsed
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 8 years
- Last post
- Jul 2023
In their words
- Condition: ME/CFS
I am a ME/CFS patient, have had this for 8 years
In context ↗ - At worst: Mild
I am categorized as mild
In context ↗ - Now: Relapsed
By all metrics I was recovered from ME/CFS: I literally had a normal life other than intrusive thoughts. ... the last 10 weeks have been grueling.
In context ↗
Read from 8 of their posts and comments; links to the 7 this page draws on
Summary
Lynx 76235, an ME/CFS patient ill for about eight years, was severely brain-fogged at college but later worked at a top software company. They reported a four-year total recovery, and said antidepressants, meditation, a vagus nerve stimulator and self-run neurofeedback had helped them reach near-full recovery. Then a neurofeedback provider brought months of adrenaline surges, insomnia, derealisation and suicidal thinking. By mid-2023 they described themselves as mild, still foggy and lethargic.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- antidepressants (Wellbutrin/bupropion, Zoloft) · Helped
SSRIs helped me a bit more than bupropion.
In context ↗ - Vagus Nerve Stimulator · Helped
I also had a Vagus Nerve Stimulator put in last year and that helped.
In context ↗ - Focused Attention Meditation · Helped a lot
Focused Attention Meditation helped a ton
In context ↗ - Branch Chain Amino Acids · Helped a lot
Branch Chain Amino Acids also helped a ton.
In context ↗ - Low dose naltrexone · No change
Low dose naltrexone didnt really help me.
In context ↗ - Magnesium Threonate · Helped
Magnesium Threonate helped but it also gave me some issues later on.
In context ↗ - Stimulants · Much worse
Stimulants made every thing 10x worse for me down the line.
In context ↗ - rTMS · Much worse
rTMS ruined my life for a few years
In context ↗ - Ketamine · Worse
I did 3 series. Worked great for depression but destroyed my sleep and when it wore off my depression and energy was much worse.
In context ↗ - neurofeedback · Much worse
Neurofeedback helped me for years, but has also since ruined my life for the time being.
In context ↗ - benzodiazepines · Not said
Thought this would be a great time to get off the benzos I have been on for 7 months and it has made the last few days pretty interesting to say the least.
In context ↗ - walking and exercise everyday · Worse
last week I tried to walk a bunch each day and exercise everyday to escape the derealization and it led me to feel like I had the flu
In context ↗
Approaches: SSRIs · Amino acids and carnitine · Mind-body practices · Other antidepressants · Supplements · Vagus nerve stimulation
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| 2015 | ME/CFS began at college with severe brain fog and visual disturbancesWhen I first showed up to college my brain fog was so bad I couldnt remember my roommates names most of the timeIn context ↗ |
| 2022 | Recovered after self-run neurofeedback and was working at a top software companyBy all metrics I was recovered from ME/CFS: I literally had a normal life other than intrusive thoughts.In context ↗ |
| March 2023 | Provider neurofeedback (9 sessions) caused adrenaline surges, insomnia and worse intrusive thoughts; a second protocol left extreme fatigue and derealisationI started getting extreme adrenaline surges, horrible insomnia and my intrusive thoughts got 10x worse.In context ↗ |
| May 2023 | Derealisation began to ease in the third monthNow on month 3 and things have started to turn the corner.In context ↗ |
| May 2023 | Came off 7 months of benzodiazepines and daily walking and exercise left him feeling like he had fluit has made the last few days pretty interesting to say the least ... it led me to feel like I had the fluIn context ↗ |
| June 2023 | Rated himself mild, functioning as a normal person with brain fog and lethargyI have gone from mild to asymptomatic a few times for 6+ months each time.In context ↗ |
Adverse events
- Stimulants (unspecified)“Stimulants made every thing 10x worse for me down the line.” In context ↗ Made symptoms worse
- rTMS (transcranial magnetic stimulation)“rTMS ruined my life for a few years.” In context ↗ Made symptoms worse
- rTMS (transcranial magnetic stimulation)“It made me crash super hard, made Wellbutrin not work and left me much more depressed long term.” In context ↗ Mood or psychiatric effects
- Ketamine“Worked great for depression but destroyed my sleep” In context ↗ Insomnia from treatment
- Neurofeedback“I got my brain to probably a 9.5/10, but I increased my intrusive thoughts a little.” In context ↗ Mood or psychiatric effects
- Neurofeedback“I started getting extreme adrenaline surges, horrible insomnia and my intrusive thoughts got 10x worse.” In context ↗ Side effects
- Neurofeedback“I started getting extreme adrenaline surges, horrible insomnia and my intrusive thoughts got 10x worse.” In context ↗ Insomnia from treatment
- Neurofeedback“I started getting extreme adrenaline surges, horrible insomnia and my intrusive thoughts got 10x worse.” In context ↗ Mood or psychiatric effects
- Neurofeedback“I was left with extreme fatigue and horrible derealization.” In context ↗ Made symptoms worse
- Everyday exercise and activity“last week I tried to walk a bunch each day and exercise everyday to escape the derealization and it led me to feel like I had the flu.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Brain fog
having this secret of horrible brain fog and lethargy for about 90% of my me/cfs journey
In context ↗ - Vision problems
my vision would get lots of holes in it
In context ↗ - Sleep problems
I started getting extreme adrenaline surges, horrible insomnia
In context ↗ - Anxiety & low mood
Worked great for depression but destroyed my sleep and when it wore off my depression and energy was much worse.
In context ↗ - Post-exertional malaise
these drugs definitely help me worry less about crashes
In context ↗
Ask Miruvor AI
Similar stories
-
Winded after seconds of play with long COVID, now near normal with vagus nerve stimulation
A Reddit user who caught COVID in February 2020 was, after more than two years of long COVID, winded after seconds of gentle play with their daughter. Vagus nerve stimulation with a TENS unit and ear clip, an herbal SIBO protocol, miralax and a large…
-
Severe long COVID with clots, POTS and MCAS, somewhat better with pacing and antihistamines
A US virologist and infectious disease specialist got complex severe long COVID after a COVID infection in Korea in 2023, with blood clots, POTS, orthostatic hypotension, chest pain, gut problems and MCAS. Ivabradine, midodrine, apixaban, low-dose…
-
Housebound with ME/CFS, now somewhat better with pacing and radical rest
A US man who developed long COVID in early 2021 became housebound and at times largely bedbound after a third infection in December 2022. Pacing, radical rest, diet changes, leaving a mouldy flat, magnesium, nattokinase, NAC, CBD and nicotine patches brought…
-
Not enough detail to draw a path
Barely able to walk with long COVID, now improved to 60-80%
A 43-year-old Arizona man developed long COVID in 2022, about two months after a booster, and at times could barely walk, losing 40 lb, mostly muscle. Lexapro, later Wellbutrin, microbiome work, lactoferrin and nicotine patches were among his treatments; he…