Very severe ME/CFS, improved, then relapsed after topamax increase
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- Not stated
- Last post
- Sep 2026
In their words
- At worst: Very severe
lying in my dark room, not having enough energy to open my mouth or swallow
In context ↗ - Now: Relapsed
it was just a spontaneous remission ... my baseline is worse but I’m stable now
Read from 14 of their posts and comments; links to the 12 this page draws on
Summary
Beacon 16838 has ME/CFS and reached a very severe low around mid-2025, eating about a bite of food a day and lying in a dark room. They improved in a spontaneous remission they could not explain, then worsened after increasing topamax; in late 2025 they were unable to tolerate much light or sound, and by late 2026 they were on the severe side and housebound. Metoprolol noticeably lowered their heart rate; LDN and TMS did nothing.
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What they tried
What they credit
Also tried
Their words about each treatment
- LDN · No change
I’ve tried LDN and TMS, neither worked for me.
In context ↗ - therapy · Helped
I haven’t found anything else outside of therapy and meds that’s been significantly helpful.
In context ↗ - probiotics · No change
I’ve tried just about everything, lots of different kinds of therapy, probiotics, changing my diet, TMS, acupuncture (mostly for my chronic pain), etc.
In context ↗ - meds · Helped
if I’m not medicated, I am a wreck ... every med I’ve been on that has worked has stopped working at some point
In context ↗ - pacing · Not said
I’ve been pacing as much as I can.
In context ↗ - topamax · Worse
Also increased topamax. I think that’s the problem. ... Topamax makes it so hard to think
In context ↗ - metoprolol · Helped
Not a massive improvement, I’m on what I think is the lowest dose, but still a very noticeable improvement.
In context ↗ - fiber supplements · Not said
I was pooping once a week, even with laxatives and fiber supplements.
In context ↗ - meal replacement drinks (Ensure, premier protein, boost, Kate farms) · Worse
All the meal replacement drinks I’ve tried have started making me nauseous.
In context ↗ - manta sleep mask · Helped
I got a mask from them recently and it’s been very helpful.
In context ↗ - spontaneous remission · Helped a lot
I eventually improved, and I have no clue why, it was just a spontaneous remission that I’m so incredibly grateful for.
In context ↗
Approaches: CBT & mindset · 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 |
|---|---|---|---|
| about a year before August 2026 | lowest point: months of worsening nausea and weight loss, barely able to eat or drink, lying in a dark roomAt my worst I was eating a bite of food a day, maybe, and getting a sip of waterIn context ↗ | Very severe | |
| 2025 | spontaneous remission with no explanation; could watch videos and draw a littleI eventually improved, and I have no clue why, it was just a spontaneous remissionIn context ↗ | Severe | Time and spontaneous remission |
| 2025-11-21 | crashed after a psych/SSDI evaluation and a topamax increase, back to light and sound sensitivityNow I’m back to a place of sounds and lights being too much for me. I was doing better. Now I’m not.In context ↗ | Severe | |
| 2026-08-01 | baseline fell after months of appointments and insurance battles; housebound, only just stablemy baseline is worse but I’m stable now, and I’ve been stable for less than a monthIn context ↗ | Severe | |
| 2026-09-21 | still mostly in bed, appetite and nausea worsening againI’m more on the severe side of things.In context ↗ | Severe |
Adverse events
- Topiramate (Topamax)“Topamax makes it so hard to think, so I had to exert myself even more to get through it” In context ↗ Side effects
- Topiramate (Topamax)“Also increased topamax. I think that’s the problem. ... Now I’m back to a place of sounds and lights being too much for me.” In context ↗ Made symptoms worse
- “All the meal replacement drinks I’ve tried have started making me nauseous.” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I’ve noticed my depression gets much worse when I’m in PEM.
In context ↗ - Brain fog
Topamax makes it so hard to think
In context ↗ - POTS & dysautonomia
She knows that my hr is high and jumps with any slight exertion
In context ↗ - Gut problems
I was getting more and more nauseous, tolerating less and less food and water
In context ↗ - Light & noise sensitivity
Now I’m back to a place of sounds and lights being too much for me.
In context ↗ - Anxiety & low mood
I have depression normally but it’s manageable with meds
In context ↗
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