In bed 24 hours a day with ME/CFS, now much better after beta blockers and gabapentin
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- Not stated
- Last post
- Oct 2023
In their words
- Condition: ME/CFS
at 31 I was in bed 24 hrs a day, in a dark room, no light, sound, hardly any stimulation
In context ↗ - At worst: Very severe
at 31 I was in bed 24 hrs a day, in a dark room, no light, sound, hardly any stimulation
In context ↗ - Now: Much better
At 34, I’ve actually run through the home sometimes, I can have chats with friends, I can do small hobbies and watch tv shows and have a much better quality of life.
In context ↗
Summary
Cedar 62667 was in bed 24 hours a day in a dark room with no light or sound at age 31. At 34 they could run through the home, chat with friends, do small hobbies and watch TV shows. They credit new medications, beta blockers for dizziness and POTS and gabapentin for light and noise sensitivity, plus the family's new cat. Gabapentin also made them sleepier; they took 300 mg three times a day.
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What they tried
What they credit
Their words about each treatment
- Gabapentin · Helped
Gabapentin helped my sound & light sensitivity a lot ... However it also made me even more sleepy.
In context ↗ - beta blockers · Helped
the beta blockers helped the adrenaline feelings/dizziness & PoTS
In context ↗
Approaches: Beta-blockers · Other drugs and medicines
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| age 31 | in bed 24 hours a day in a dark room, no light or soundat 31 I was in bed 24 hrs a day, in a dark room, no light, sound, hardly any stimulationIn context ↗ | Very severe | |
| age 34 | able to run through the home, chat with friends, do small hobbies and watch TVAt 34, I’ve actually run through the home sometimes, I can have chats with friends, I can do small hobbies and watch tv showsIn context ↗ | Moderate | Beta-blockers (unspecified) |
| 2023-10-04 | much better quality of life on beta blockers and gabapentinI started some new medications - beta blockers and gabapentinIn context ↗ | Moderate |
Adverse events
- Gabapentin (Neurontin)“However it also made me even more sleepy.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Light & noise sensitivity
Gabapentin helped my sound & light sensitivity a lot
In context ↗ - POTS & dysautonomia
the beta blockers helped the adrenaline feelings/dizziness & PoTS
In context ↗
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