u/penting

Hi, looking for a bit of advice. I started LDN on 28th April this year. I have M.E., POTS, and probably MCAS as well, although trying to get that diagnosed on the NHS feels pretty pointless at this stage.

I started on 0.5mg for the first two weeks and initially had a massive increase in fatigue and pain. After about 7 days it settled down a bit, and then I actually had probably the two best days I’ve had in the last 6 months. Because of that, I increased to 1.0mg as per the titration instructions (0.5mg every 2 weeks up to 4.5mg).

Ever since increasing though, I’ve had a big flare in both fatigue and pain again. I’ve tried taking it both in the evening and in the morning, but it doesn’t seem to make any difference. I’m waking up with aches and pains that feel 10x worse than normal, sore throats, and generally feeling awful. I’m also taking paracetamol virtually every day at the moment just to cope with it.

I think I probably went into LDN hoping it would be a bit of a magic bullet like it seems to be for some people, but at this point I genuinely can’t tell whether it’s helping or making things worse.

Has anyone else experienced this when increasing doses, and did it settle with time? It’s also possible that this is just my M.E worsening, although, I’ve not done much else across the last week or so apart from lay on the sofa.

Hi everyone,

I started LDN last Saturday for ME/CFS. I also have POTS. I’m currently on 0.5mg every evening, with the plan to titrate up by 0.5mg every 2 weeks.

I felt great on Sunday and Monday, then had vivid dreams for a few days, although those have mostly settled now. Since Tuesday, though, I’ve been absolutely exhausted. Even with ME/CFS, I don’t usually nap. I normally just rest and lie down, but I’ve napped every day this week. My body pain, especially muscle and joint pain, has also been a lot worse.

I switched to taking it at night last night to see if that would help with the tiredness, but it hasn’t really made a difference, and I’m exhausted again today.

I take the drops under my tongue, so I’m currently on 1 drop a day. I’m not sure how I’d lower the dose to 0.25mg or 0.1mg if I wanted to try starting lower.

Has anyone else experienced this kind of crash or increased pain when starting LDN? Did it settle for you, or did you need to reduce the dose? Also, does anyone have advice on how to reduce the dose when using drops?

Any thoughts or experiences would be really appreciated.

Hello, I’m hoping for some UK-based advice, particularly from anyone in England who has experience with POTS referrals.

I was referred to cardiology because of suspected/diagnosed POTS. My sleeping heart rate is around 56 bpm and my resting heart rate is around 66 bpm, but when I stand it can rise to around 170 bpm. I also experience severe fatigue, and this is having a major impact on my daily life.

Unfortunately, cardiology refused my referral because my ICB area does not have a commissioned service for POTS. This means I’m currently unable to access treatment locally. My GP has said there is nothing further they can do.

Has anyone been in a similar situation, or does anyone have advice on what steps I could take next?

Any advice or experiences would be really appreciated, as this is significantly affecting my quality of life.

Hello,

I started LDN on Friday for M.E. and was wondering how long the side effects usually tend to last.

On Friday and Saturday night, I had what I’d describe as normal dreams. I say “normal” because I haven’t really dreamt, or at least remembered any dreams, since before developing M.E. around six years ago, so I actually didn’t mind that at first.

However, over the last two nights, the dreams have become very vivid, and I’ve been waking up shouting / screaming during the night. Other than that, I haven’t noticed any other side effects.

I started on 0.5 mg and take it in the morning. I’ve never been particularly sensitive to medication, although the only other one that has caused me issues was the antibiotic nitrofurantoin, which coincidentally also gave me very vivid nightmares.

I’d be grateful to hear other people’s experiences, especially how long this kind of side effect lasted for you. My titre is set at 0.5 for 2 weeks, then 1 for 2 weeks etc etc dependant on symptoms.

Thank you :)