Severe LDN side effects continuing even after stopping the medication?

[YippeeKi YOW !!]

OK. Here's how to do quotes.

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There. That's the whole secrret ....

 

[linusbert]

btw, who is they? are multiple people involved? am a bit confused.

 

[L'engle]

btw, who is they? are multiple people involved? am a bit confused.

If I understand correctly 'they' are one (1) non-binary person. English doesn't have a singular non-gendered pronoun so the use of 'they' has become standard practice.

 

[L'engle]

They're obviously very hurt that they've put their trust in me, and I was careless and rushed their dose increase and caused this.

You are not careless. Avoiding side effects is virtually impossible. You aren't the cause of any of this.

 

[SpinachHands]

If I understand correctly 'they' are one (1) non-binary person. English doesn't have a singular non-gendered pronoun so the use of 'they' has become standard practice.

Correct 👍 Me and my partner both use they/them pronouns (have had to explain to more than one confused doctor that I'm not caring for multiple people with the same illness 😅)

 

[Viala]

They're obviously very hurt that they've put their trust in me, and I was careless and rushed their dose increase and caused this.

In CFS severe side effects can happen literary with everything, any food, medicine and supplement. It can also change in time, one week someone will be tolerant and another the dose will be too high. This disease is very unpredictable.

It is better to start with very low doses, but some medicines and supplements are not good at any dose, it is possible that LDN would cause issues no matter the dose. Maybe it's even better now because with lower dose side effects could creep in slowly and it would be more difficult to find the culprit and what started it. It won't change what happened but at least you will not beat yourselves up, it's not worth of emotional turmoil, you'll both need peace of mind to make all of this as comfortable as possible.

 

[linusbert]

Correct 👍 Me and my partner both use they/them pronouns (have had to explain to more than one confused doctor that I'm not caring for multiple people with the same illness 😅)

If I understand correctly 'they' are one (1) non-binary person. English doesn't have a singular non-gendered pronoun so the use of 'they' has become standard practice.

ok, but why not invent a new pronoun for it then? double using words is a bad practice. its not possible to distinguish between "they" referring to a group of folks or "they" referring to a singular person.
especially in that case because you have to have deep context and knowledge about the person. its not possible to read a whole generalized text like a press article and know its meant to be singular or plural.
i am a IT guy, double meaning of operator especially when its used for opposites is bad. not only in IT i guess ^^

 

[SpinachHands]

ok, but why not invent a new pronoun for it then? double using words is a bad practice. its not possible to distinguish between "they" referring to a group of folks or "they" referring to a singular person.
especially in that case because you have to have deep context and knowledge about the person. its not possible to read a whole generalized text like a press article and know its meant to be singular or plural.
i am a IT guy, double meaning of operator especially when its used for opposites is bad. not only in IT i guess ^^

I'd really rather not get into this on a post about my partner's health. The singular they has always existed in the English language and picking up from context is how you differentiate. There are lots of words in English that are spelt the same but have various meanings. Why complicate things by trying to make up a new word, when I already have enough trouble with getting people to understand the use of a word that's existed for hundreds of years?

 

[linusbert]

The singular they has always existed in the English language and picking up from context is how you differentiate

Why complicate things by trying to make up a new word, when I already have enough trouble with getting people to understand the use of a word that's existed for hundreds of years?

like the generic he?
people nowadays repurpose language all the time. whats been used hundred years ago isnt whats used today. sometimes old worlds are used again, and sometimes new words are forbidden. and these changes happen now like every year. its so confusing its hard to keep up anymore.

i am no native english speaker btw, i do not know whats been used in english language a few hundred years ago. also american language did divert from british english so there are multiple flavors of english around at the same time.
i just want to be able to communicate and understand and be understood by other folks.

I'd really rather not get into this on a post about my partner's health.

i understand that. but if you use language which isnt commonly used or understood, people will be confused and ask.
but i understand now, that "they" is the word you use to talk about your one and only partner. at first i thought you had multiple sick partners. fine for me.

 

[SpinachHands]

Aftrr this iincrediibly long rrely, judging y the number of things I quoted, I'll post a seaprate reply giving you easy-peasy directions on how to quote. You;ll be amazed at how simpple it is once you get the hang .

Thanks for the instructions! Think I've got the hang of it...

No choice. Sleep is critical to theirr recovery from this, and insomnia is another layer of hell they dpn;t need right now. I speak from sad experience here ....

Thankfully they slept 12 hours last night, hope their body managed to do some catch up recovery, and they have another good night tonight.

I don;;t thib it's iflammation. Itt's a posssibility, but my instinct is that you're dealing with badly destabilizeed neuro issues.... unfortnately,, the meds that you need to use to stabilize them right now will cause additional problems, but in comparison they'll be small. nd you have no choice .....

Are you thinking of any particular meds that would stabilise their neuro issues? Or is that re. the GABA, etc you mentioned?

Many, but not all .... again, it;s entirely possible, but I don;t think that;s the case .... get a thyrroid panel rrun up just in case, T3, T4,, freeT3, etc etc ...

I've got an at home blood test from medichecks so will try that as soon as they're up to it!

Yeah. No. They;re probbly low on B vits due to the LDN and everything they;re going thru .... stress of any sort burns tthru B's pretty fast ....

Ahh, I didn't know that, very good to know!

Muscle tremors, spasms, etc are classic signs of a samaged, over-stimulated nervous system response, and of withdrawaal, whichbis what I think theylre goig thru. I know that 3 weeeks doesnlt seem like long enough to produce a withdrrawal response, but honestly,, it really is. Some really unlucky patients can go thru withdrawl after just a few days on a pysch med .... other more fortunate souls have no issuess at all after years ....

I read that LDN isn't supposed to have withdrawal, since it's an opiate antagonist? But who knows, I know psych meds are a nightmare from personal experience, so trying to avoid using those.

 

[SpinachHands]

As hapl808 pointed out, ME is about individual responses. LDN works really well for some people, and I think negative effects are relatively rare, so I think it's a good gamble. It worked really well for me, with no negative effects. Pretty much everything, even normal foods, have some risk of negative responses for PWME. Pretty much everything also has a chance of beneficial effects. We have to do our own risk/benefit analysis. The benefits I've gotten from trying everything I did try has been well worth the minor inconveniences I've suffered from them.

I do suggest looking for other diseases that LDN--and full dosage naltrexone--are prescribed for and checking their forums. Maybe it's a known response that tends to pass after a few days. There might even be some recommended measures to take. Just don't fall for silly "This worked for me!!!" treatments, like wearing a chicken on your head. I'm pretty sure a search would turn up some nonsense treatments.

Yeah I think it was definitely worth the risk, especially hearing how much it's helped other people. Maybe they'll give it another try once they've stabilised a bit more too. Any medicine is a gamble, especially where they are so reactive, so it's about picking carefully, and avoiding anything too risky with too low a reward.
I did ask on the LDN Reddit who were fairly helpful, although many had never even heard of someone taking below 0.5mg, and some suggested massively increasing their dose all at once to "push through" the reaction.....so taking all advice from non-ME people with a big pinch of salt. (That being said, I suppose we haven't tried chicken on the head yet, you never know 🤔😅)

 

[SpinachHands]

Your partner sounds highly agitated and I'm wondering if the doctor could prescribe something for anxiety/panic attacks? Sometimes we aren't even aware of what's going on, and he may fight it BUT the fact is that he sounds like a person who needs this medication.

Luckily they have some diazepam prescribed for that already, once I explained the damage a panic attack could do she was thankfully understanding. And when I asked for a renewal along with the zopiclone she hesitated, but then said "actually with how cautious you are with everything, I'm sure they're the opposite of a pill popper! I'm happy giving you more"

Specifically ask for a pharmacist and confirm it with them once you've reached one. Most are as knowledgeable as doctors, will give advice and know the human body very well. They're also good if asking about vitamins, etc.,

Yes, any time I have mentioned supplements or vitamins to a doctor they act like I've said I'm performing healing crystal rituals. But the first time I spoke to this pharmacist, she recommended CoQ10 right off the bat, made me immediately feel at ease knowing that she'd even heard of that

 

[SpinachHands]

i understand that. but if you use language which isnt commonly used or understood, people will be confused and ask.
but i understand now, that "they" is the word you use to talk about your one and only partner. at first i thought you had multiple sick partners. fine for me.

Sorry if I was snappy there, you were only asking a question, thanks for understanding. I'm very used to having to defend myself from less kind people who are not willing to learn or listen or respect me, which is why my guard goes up.

 

[Wishful]

although many had never even heard of someone taking below 0.5mg, and some suggested massively increasing their dose all at once to "push through" the reaction

LDN is a bit tricky, since instead of a straight dose-dependent action, it has a peak optimum dosage. I started with the standard prescribed 4.5 mg and that worked great--for me--with no problems. I experimented with dosage, and found that it had full effects at (IIRC) 2.25 mg, but practically ineffective at 2.1 mg. Somewhere past 5 mg it also lost effectiveness. I never tried below 2 mg, because that level had no effect for me. Other people claim effects with microdoses. We're all different. LDN totally blocked the muscle aches I'd been suffering from, but had no other effects on my ME, while others had completely different effects.

Given a severe bad reaction, I'd be reluctant to experiment further. However, there's the possibility that it has positive effects at a different dosage or with a different filler (mine used lactose). Since it is one of the few drugs that works for a significant number of PWME, maybe instead of putting it in the "never again" category, put it in the "desperate and out of other things to try" category. Factor in how long it takes to recover from the first experiment.

 

[L'engle]

i am a IT guy, double meaning of operator especially when its used for opposites is bad. not only in IT i guess ^^

Operator overloading has its uses, in IT and elsewhere. This is off-topic, and not something we're going to solve here.

 

[linusbert]

Operator overloading has its uses, in IT and elsewhere. This is off-topic, and not something we're going to solve here.

if this is off topic you shouldnt have wrote this after we actually resolved this side topic

Spoiler

it never is good practice to overload operators in a way they are contrary to the original meaning, the Principle Of Least Surprise is to be applied. in general operator overloading is controversial and by some considered to be bad practice, and also has very limited use cases.
many big programming languages like java or golang do not even support it.

 

[SpinachHands]

Update: yesterday was a little better, today is worse again. They have said the hardest thing is finding a way to mentally cope. Before, they could just rest and wait, understanding they were at the whims of their illness, believing with time that improvement would come. But now they feel, since they blame me for not being more careful with the LDN dosing, that they're at my whims, and what before what was an uncontrollable force is now an active force hurting them, accidentally or not. They can't find a way to not blame me or forgive me, and they have lost the one comfort they had. I'm trying all I can, but this is a fear I can't help them with.

I've ordered the pharmaGABA and Taurine that @YippeeKi YOW !! recommended, and I pray it does something to help. We're trying diazepam, CBD oil, antihistamines, increasing their B12 and vitamin D, adding a B-complex, but nothing is changing it so far.

All they want is something to fix this, or to even know when it will end, or some way to cope through it, but I can't give them any of that when they don't trust me, and I don't have any certainty of what's wrong or when it will stop. They've said if this causes another crash, or they don't recover in a few weeks they want me to put them out if their misery and that it will be my fault. This is not the first time they've asked me this, or given me a deadline or ultimatum, but it is the first time they've blamed me.

I know everyone here has tried their best too, to provide some help or answers. I can't give them any more than I already have, I can't give them a way to cope. I know this is down to them, and their own mental strength, but they're approaching their limit. They're scared that they're going to crash themselves by trying to get out of bed just to escape this feeling (I've promised to pin them down if it gets to that point).

I'm sorry this is miserable, and I know none of you, let alone me, can reach inside my partner's head and find a way for them to cope or be comforted. I can't use magic vision to look inside their body and see exactly what's wrong and how long it will last or how to fix it. I wish all these things were possible, as I imagine many of you have wished along your journeys. I pray that they're not in their right mind, and when they recover from this... dysautonomia? Nervous system overload? Herx reaction?....that they can find comfort and a way to cope, even to stop hating me or trust me again.

 

[Scarlett*54]

I need some urgent help and advice. I have spoken to 111 and a clinician is calling me back within a few hours but I'm not hopeful that they'll be knowledgeable enough to help. I will also call the prescriber when they open in 3 hours.

My partner started on 0.1mg LDN 3 weeks ago, and increased to 0.5mg. the side effects were usually going after a few days, but at 0.5 they continued persistently for 5 days and so we stopped. It's been two days since their last dose but the side effects are still very severe and preventing them from sleeping. They have intense pain all over, head pain, squeezing feeling of head, bad brain fog, they can barely think or speak, they are breathing faster than normal with an increased heart rate, plus some muscle spasms/contractions and massive emotional changes (extreme upset, fear, anger). The main issue right now is they can't sleep through this. The first day off 0.5 they were awake for 24hours. Managed to sleep for about 8 hours after that, but now it's been nearly 22 hours awake again. All they have for sleeping is antihistamines, which they can't take more of due to tolerance, and melatonin, which hasn't worked. I can ask the GP for an emergency prescription of zopiclone when they open in 4 hours. The side effects seemed to be going away today but the moment they were trying to sleep they came back full force. The LDN should be out of their system by now, so I don't understand why it's still affecting them. I've asked if it could be something else but they've said it's very distinctly what they felt from LDN and I trust them to know their body.
Sorry this is rambling, I'm also on barely any sleep and they have been begging me to help, and blaming me for increasing the dose too quickly, which I admit and realise. I just don't know how to fix this, or why they are still reacting so severely.

Hello - I just wanted to let you know that I had the same side effects (severe insomnia & anxiety) while taking a 1/4 - 1/2 mg. of LDN. Since I stopped taking it, I have slept well every night. Actually, this happens to roughly 3% of us who take it & my doctor is not sure why. I really wish I could have continued taking it as it helped me a lot with fibromyalgia, CFS, & long covid. But the lack of sleep was much worse on my general well-being & physical health.

 

[SpinachHands]

Hello - I just wanted to let you know that I had the same side effects (severe insomnia & anxiety) while taking a 1/4 - 1/2 mg. of LDN. Since I stopped taking it, I have slept well every night. Actually, this happens to roughly 3% of us who take it & my doctor is not sure why. I really wish I could have continued taking it as it helped me a lot with fibromyalgia, CFS, & long covid. But the lack of sleep was much worse on my general well-being & physical health.

That's good to know you had a similar experience, at a similar dose too! I'm pretty sure at this point it's their nervous system on overdrive- antinflammatories haven't helped, immune system boosting hasn't helped, but CBD and a cold flannel on the vagus nerve has! Hoping if we can get their ANS calmed down, the rest of their body will follow, and realise it hasn't had LDN in nearly a week now 🤞

 

[hapl808]

But now they feel, since they blame me for not being more careful with the LDN dosing, that they're at my whims, and what before what was an uncontrollable force is now an active force hurting them, accidentally or not. They can't find a way to not blame me or forgive me, and they have lost the one comfort they had. I'm trying all I can, but this is a fear I can't help them with.

I understand that people in pain lash out, but I'm very sorry you're dealing with that because in my view, it's ridiculous. This is an impossible illness, and you're doing everything you can. Many of us (myself included), have had experiences where loved ones or doctors actively and permanently harmed us - not accidental or trying to do well, but by people who disbelieved us and pushed us to do things we warned them about or exposed us to things we knew would harm us, etc. Partners who never supported us, those who specifically tried to 'harm' us to prove we were being hypochondriacs.

I recently took lemon balm - maybe 10% of a pill first to see how I react. Then half a pill. This is not some crazy careless dosing. We have to be exceedingly careful, and even then we still don't always end up with good outcomes.

So again, I know they're just being irrational and looking for someone or something to blame - I hope you can remember that as well. You could be an MD/PhD/RN with a lifetime of experience in MECFS and do no better than you've done - and likely worse, because you're being exceedingly conscientious and thoughtful, and 'professionals' tend to do whatever they want and disbelieve you if you say it made you worse.

This isn't a dig at your partner - but probably a bit of jealousy on my part, as I've never had a friend or loved one who was willing to help me two days in a row, let alone what you describe. I ended up in a hotel alone for months when I had a terrible allergic reaction in my home.

Anyways, hope your own health (mental and physical) is managing.