ME/CFS with POTS and MCAS, now somewhat better with LDN and pacing
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I wasn't *severe*, maybe on the verge of it
In context ↗ - At worst: Moderate
I wasn't *severe*, maybe on the verge of it
In context ↗ - Now: Somewhat better
I've been doing better and have been able to wash it about once every 1-1.5 weeks
In context ↗
Read from 30 of their posts and comments; links to the 17 this page draws on
Summary
The user has ME/CFS with POTS and MCAS, and wasn't sure whether they were on the severe end of moderate or severe. Ivabradine lowered their resting heart rate and raised their baseline, and MCAS medication plus a low-histamine diet restored their mental health. Later they credited LDN, enoxaparin injections, high thiamine and 30-second pacing in the shower with fewer crashes and a better baseline, though exertion still caused crashes.
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What they tried
What they credit
Also tried
Their words about each treatment
- Prof. Simon's 30-second pacing · Helped
I actually noticed that doing it like this gave me less PEM and I think this "training" is one of the many reasons I'm doing better now
In context ↗ - yoga nidra · Helped
when I do yoga nidra on an almost daily basis, i end up seeing a noticable difference in how often/long/severe that hyperarousal happens
In context ↗ - Passion fruit flower · Helped
other helpful things: Passion fruit flower! (you can get it in capsules)
In context ↗ - Ivabradine · Helped
with ivabradine, my lying down heart rate is in the 50s-60s. it feels like my body actually gets rest and I believe that's why my baseline got higher
In context ↗ - progesterone transdermally · Helped
taking progesterone transdermally in the second half of my cycle (it was low in my bloodwork, apparently that's often the case with these symptoms) and daily 5-HTP helps me
In context ↗ - low histamine diet · Helped
I'd cut out histamine two or three months before my diagnosis and had already begun to see it helps me
In context ↗ - red light · Helped
red light, put behind my bed, is best for me when everything else hurts my eyes
In context ↗ - physio exercises · Not said
I do physio ones to gain back joint stabilising muscle. Each day I decide whether I have the safe capacity do some
In context ↗ - ASA · Helped a lot
within like two weeks I was doing so much better, especially PEM and fatigue wise ... Didn't tolerate it for more than a few weeks because of my mcas
In context ↗ - high thiamine · Helped
I'm doing high thiamine (not following any specific protocol tho) and it's definitely helped stabilise me a bit
In context ↗ - nicotine patches · Helped
Each round of nicotine patches has resulted in a slightly better baseline and nervous system for me
In context ↗ - glycolic acid · Helped
For me, 1-3 more days of my hair not feeling awful before I'm able to get my next wash in is worth it
In context ↗ - benzodiazepines · Helped
I've found relief from benzodiazepines. For the insomnia but also because they're very strong mast cell stabilisers
In context ↗ - acupressure mat · Helped
Lying on an acupressure mat sometimes manages to calm down my nervous system for a little while
In context ↗ - LDN · Helped
definitely **LDN**
In context ↗ - Enoxaparine · Helped
seemingly **Enoxaparine** (I have microclots): injecting it on a day with exertion appears to help prevent/soften the resulting PEM for me
In context ↗ - AKG (alpha-ketoglutharate) · Not said
possibly **AKG** (alpha-ketoglutharate): recently started taking it leading up to and (in a higher dose) on days with more activity
In context ↗ - Ribose · Helped
to lesser degrees: Ribose, extra electorlytes, extra H1 antihistamines, extra Ivabradine
In context ↗ - natural adrenal cortex supplement · Helped
it's supposed to do sth similar to very low dose cortisone and definitely helps me
In context ↗ - Ketotifen · Helped a lot
the first two weeks of being on it were incredible. Nothing I ever took for sleep worked that well. While that effect didn't last for me
In context ↗ - H2 antihistamine · Not said
I personally don't notice an immediate effect from taking them though, unlike with some of the H1 ones
In context ↗ - prednisone · Helped a lot
prednisone is, like, my emergency medication that makes me crash much, much less from exertion and can even help me lessen crashes that are already happening
In context ↗
Approaches: H1 antihistamines · POTS medication · Anticoagulants · Diet · Hormones & thyroid · Pacing · Supplements
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 |
|---|---|---|---|
| 2024-07 | lowest point, on the verge of severeI wasn't *severe*, maybe on the verge of itIn context ↗ | Moderate | |
| 2024-08 | resting heart rate fell and baseline rosemy resting heart rate got so much lower that I felt like my body was finally able to get some rest. which in turn helped my baselineIn context ↗ | Moderate | Ivabradine |
| 2025-08 | high-dose thiamine stabilised them a bitI'm doing high thiamine (not following any specific protocol tho) and it's definitely helped stabilise me a bitIn context ↗ | Moderate | Thiamine / benfotiamine |
| 2026-10 | still crashing from exertion, prednisone used as emergency medicationprednisone is, like, my emergency medication that makes me crash much, much less from exertionIn context ↗ | Moderate |
Adverse events
- Aspirin“Didn't tolerate it for more than a few weeks because of my mcas but there are more tolerable options out there, just fyi.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I actually noticed that doing it like this gave me less PEM
In context ↗ - POTS & dysautonomia
I also have pots, so that's what it was prescribed for
In context ↗ - Mast cell (MCAS) & allergies
once my mcas was medicated, my adhd got more managable again
In context ↗ - Anxiety & low mood
my mental health still instantly comes crashing down with a flare now
In context ↗ - Sleep problems
I've had insomnia and bad sleep my entire life
In context ↗ - Breathlessness
breathing problems that start with bloating
In context ↗ - Heart symptoms & palpitations
my resting heart rate often was in the high 80s or 90s
In context ↗ - Light & noise sensitivity
red light, put behind my bed, is best for me when everything else hurts my eyes
In context ↗
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