Cyclic crashes with ME/CFS; improved on vitamin D and LDN, then worse after an overdose
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 6 years
- Last post
- Oct 2023
In their words
- Condition: ME/CFS
I have what I consider "moderate" ME/CFS.
In context ↗ - At worst: Moderate
I would characterize my ME/CFS as moderate--life-changing for sure, but not totally debilitating
In context ↗ - Now: Relapsed
I can function somewhat, but all my CFS symptoms are worse than they were before the overdose.
In context ↗ - Began after: glandular fever or EBV
Mono was my apparent trigger
Read from 12 of their posts and comments; links to the 12 this page draws on
Summary
Bluebell 55979 fell ill after mononucleosis in August 2017, mid-PhD, and crashed cyclically for years. Vitamin D and sun exposure lifted their energy to about 80% of normal, and Vyvanse helped for six months until escalating misuse and a 2020 overdose put them in hospital and left all their symptoms worse. Low-dose naltrexone brought a modest, persistent gain, but by October 2023 they could still only function somewhat.
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What they tried
What they credit
Also tried
Their words about each treatment
- caffeine · Not said
I compensate with heavy caffeine use, and on many days even that is not enough.
In context ↗ - vitamin D supplement and more sun · Helped
I do notice a significant uptick in my energy levels
In context ↗ - marijuana (pot) · Helped
I would smoke pot, and it felt like my brain reconnected to the damaged part of my brain
In context ↗ - Vyvanse · Helped a lot
For a time, Vyvanse was a great solution. I got a solid six months of functionality and enjoying life again before my tolerance built up
In context ↗ - antidepressants · Worse
psychoactive medications like antidepressants seem to have only adverse effects on me
In context ↗ - low-dose naltrexone · Helped
I noticed a definite, persistent, if modest improvement with the LDN
In context ↗ - NAC · No change
I had already taken NAC before with no real noticeable harm or benefit
In context ↗ - Guanfacine · Worse
a few weeks after using it, I began to feel bad symptoms that have come and gone since the overdose, but they were particularly severe
In context ↗ - rest / pacing · No change
I've been resting a few days and my symptoms are not getting better
In context ↗
Approaches: Stimulants · Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. The chart starts 3 months after onset: the story doesn’t say how ill they were before that. 1 step has no time and sits in story order between the steps around it. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| August 2017 | mononucleosis (mono)Got mono back in August, recovered for two months, then crashed hard in NovemberIn context ↗ | Not stated | |
| November 2017 | crashed hard and began cyclical crashingcrashed hard in November, and have been cyclically crashing ever sinceIn context ↗ | Mild | |
| May 2018 | vitamin D supplement and more sun; crashes less severeI do notice a significant uptick in my energy levelsIn context ↗ | Mild | Vitamin D and sun exposure |
| 2019-2020, before the pandemic | six months of functionality on Vyvanse before tolerance builtI got a solid six months of functionality and enjoying life againIn context ↗ | Mild | Lisdexamfetamine (Vyvanse, Elvanse) |
| early 2020 | pandemic stress and his cat dying led to round-the-clock Vyvanse and marijuana useI was high on Vyvanse and marijuana around the clockIn context ↗ | Mild | |
| mid-2020 | Vyvanse overdose and hospitalisation; all symptoms worse sinceEventually, as you might guess, I did land myself in the hospitalIn context ↗ | Moderate | |
| December 2022 | modest, persistent improvement on low-dose naltrexone; head pressure milderI noticed a definite, persistent, if modest improvement with the LDNIn context ↗ | Moderate | Low-dose naltrexone |
| March 2023 | one of his worst crashes after a demanding teaching quarterI am having one of the worst crashes I've ever hadIn context ↗ | Moderate | |
| October 2023 | still functioning only somewhat, with symptoms worse than before the overdoseI can function somewhat, but all my CFS symptoms are worse than they were before the overdoseIn context ↗ | Moderate |
Adverse events
- Cannabis (THC, marijuana)“one time when I tried, I got some symptoms of psychosis” In context ↗ Mood or psychiatric effects
- Lisdexamfetamine (Vyvanse, Elvanse)“I became very easily addicted to Vyvanse, since it seemed to supply something my brain no longer made for itself” In context ↗ Other
- Lisdexamfetamine (Vyvanse, Elvanse)“Eventually, as you might guess, I did land myself in the hospital.” In context ↗ ER visit
- Lisdexamfetamine (Vyvanse, Elvanse)“I was arguably mild-moderate before I overdosed on Vyvanse, which seems to have worsened all my symptoms significantly.” In context ↗ Made symptoms worse
- Guanfacine“a few weeks after using it, I began to feel bad symptoms that have come and gone since the overdose, but they were particularly severe” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“Ever since the overdose, psychoactive medications like antidepressants seem to have only adverse effects on me” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
It triggered my post-exertional malaise without a doubt.
In context ↗ - Brain fog
I got the Vyvanse prescription to combat the fatigue and brain fog associated with ME/CFS
In context ↗ - Sleep problems
My sleep rarely feels restorative, I compensate with heavy caffeine use
In context ↗ - Headaches & migraine
the head pressure sounds very familiar
In context ↗ - Anxiety & low mood
my mood is on the floor
In context ↗ - Flu-like symptoms
within a few months I had my first instance of the mono feeling like it came back
In context ↗ - Vision problems
my vision blackened, I couldn't think right, and I haven't been the same since
In context ↗
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