ME/CFS
Severe → no benefit
ME/CFS housebound to bedbound on Klonopin and Lexapro, later anxious and light-sensitive
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- May 2026
In their words
- At worst: Severe
I have slowly been going from housebound to bedbound ... I don't go out of my room due to light sensitivity
- Now: No benefit
condition is worsening ... Given current sensitivities I'm afraid to try something like this out
Read from 6 of their posts and comments; links to the 5 this page draws on
Summary
Someone with ME/CFS slid from housebound to bedbound over two months in 2024 while on Klonopin and Lexapro, which caused akathisia they were too unstable to taper off. Later they found waking to take medication was breaking their sleep, and one clean eight-hour night made a night-and-day difference. By late 2025 a benzo taper with tolerance left them anxious, with adrenaline spikes and light sensitivity, staying in their room.
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What they tried
Also tried
Their words about each treatment
- Klonopin · Worse
Klonopin specifically taken 3 times a day to avoid interdose withdrawal
In context ↗ - lexapro · Worse
I am on medication causing me akathisia but I am so unstable I cannot even come off with a microtaper, klonopin and lexapro.
In context ↗ - LDN · Worse
I tried LDN at a very very very small dose years ago but stopped because of how off I felt.
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 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 |
|---|---|---|
| — | mostly in bed and housebound before medicationI spend most of my time to begin with in bed even before taking medicationIn context ↗ | Severe |
| 2024-07-14 | slid from housebound to bedbound; akathisia from medicationOver the past couple of months I have slowly been going from housebound to bedbound. I am on medication causing me akathisiaIn context ↗ | Severe |
| 2025-08-15 | slept eight hours without waking for meds and felt night-and-day betterBy chance I happened to sleep a clean 8 hours without waking up for meds and the difference was night and day.In context ↗ | Not stated |
| 2025-11-16 | benzo taper with tolerance, adrenaline spikes, light sensitivity, staying in roomit seems like bedbound already because I don't go out of my room due to light sensitivityIn context ↗ | Severe |
Adverse events
- Clonazepam (Klonopin)“I am on medication causing me akathisia but I am so unstable I cannot even come off with a microtaper, klonopin and lexapro.” In context ↗ Side effects
- Escitalopram (Lexapro)“I am on medication causing me akathisia but I am so unstable I cannot even come off with a microtaper, klonopin and lexapro.” In context ↗ Side effects
- Clonazepam (Klonopin)“withdrawal symptoms from previous unsucessful taper with akathisia ... When i get withdrawals from benzos I think I am just done.” Withdrawal problems
- Clonazepam (Klonopin)“I am going through a benzo taper and I have built a tolerance to it. Random adrenaline spikes and being generally anxious have been really bad” In context ↗ Withdrawal problems
- Low-dose naltrexone“I tried LDN at a very very very small dose years ago but stopped because of how off I felt.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Light & noise sensitivity
I don't go out of my room due to light sensitivity
In context ↗ - Anxiety & low mood
Random adrenaline spikes and being generally anxious have been really bad
In context ↗ - Sleep problems
I have been having the amount of hours of sleep I need, but is broken for a few seconds to wake up and take my meds
In context ↗