Severe LDN side effects continuing even after stopping the medication?

[SpinachHands]

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.

 

[Blazer95]

My Side effects were Bad, but Not this Bad.

I remember taking 4 days to really feel more Baselined again.

I dont have a good advice for you since Not sleeping is horrible for the system. Consider a doctor i think....

 

[hapl808]

I don't have anything to offer, but these things are so difficult. Yes, you could go from 0.1mg to 0.2mg or something, but I often try a small amount to see if I have a reaction, then go to the starting dose (which is often 0.5mg for LDN - that's what I tried I think).

LDN generally seems well tolerated, yet like many things, some people can have awful reactions. Others have no reaction. That's the difficulty for us - anything we try is a risk. I want to try LDA, but I'm concerned for the same reason.

Possibly a doctor can just find something that will help counteract the effects and get them some rest, although if it's something they haven't had before, that has its own risks.

Good luck and I'm sorry you're dealing with that. I'm sure you're overwhelmed as well.

 

[linusbert]

maybe takes 3-10 days to bounce back to normal.
maybe melatonin can help taken before sleeping hours to readjust the wake/sleep cycle, but in a disturbed system i'd hardly like to try new things until things calm down again.
some form of glycine might help as well. trying out bone broth which has lots of glycine might be a sensitive idea, its food no supplements, usually those go better. but bone broth can have high histamine if that is a issue.

 

[Hope_eternal]

I’m so sorry you and your partner are going through this. I know it’s a worst nightmare as a caregiver. My first thought is it sounds like your patenter’s nervous system is very agitated. Can they drink chamomile tea and try calming breathing exercises? When we are agitated, in pain and fearful (understandably) everything is intensified. My heart goes out to you both. I hope by now you have heard from their doctor. Does the doctor have an emergency on call number? I don’t have many recommendations I’m sorry. My son’s provider recommended him to take seriphos, 1-2s pill 30-60 minutes before bed (reduces cortisol and may promote sleep) or tranquilnol, 1-2 pills 30-60 min before bed, may take 1-2 in am if needed (sleep and calming support). You will need to check with his doctor to see if there are any interaction concerns since I am certainly not qualified. But these might be worth looking into. We have not tried them yet so I don’t have any experience with them. I would be hesitant to try new things while they are experiencing major symptoms. I pray your partner is doing better!

 

[lenora]

I lack sleep probably 6 out of 7 nights. Even if I get 2 hrs., it's a weird state of affairs. This has been going on for close to 40 years. No, I'm not bi-polar, even had myself checked out by a psychiatrist and psychologist and went to the latter for a number of months. Many, many of us have sleep problems. Sleeping meds don't help.

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. There are many different types, so that shouldn't be a problem.

Also, what about a muscle relaxant for his spasms? They can cause pain although most of them don't put one to sleep (re-phrase...don't put me to sleep).

Both of you may have to go through this until it's out of his system. I wouldn't try anything new, unless prescribed. People are correct, we don't have normal reactions to medications and everything seems to have to be started at a lower dose. I'm sorry this is happening. Yours, Lenora

 

[Wishful]

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.

 

[SpinachHands]

Thank you everyone. Yesterday an urgent GP prescribed one dose of zopiclone which helped them sleep, but they weren't knowledgeable to provide any further advice. The chemist who prescribed the LDN wasn't available so she is calling today. So is their usual GP. That's still in 9 hours time due to our early sleep schedule. My partner is still in extreme emotional distress after waking and is terrified, and is even threatening me. I am trying to remain calm and will see if I can get them to take some diazepam to calm them down too. I don't know what more advice I can give them to mentally get through this. I've told them it will pass but I can't know exactly what that will look like. Will keep you all posted.

 

[Marylib]

@SpinachHands . Thanks for the update. I am sorry your partner is threatening you.
Speaking of diazepam, could you possibly ask for Rivotril? It is - like all benzo's - habit forming. But in an emergency, Rivotril can be very helpful. It is a liquid form of clonazepam or Klonopin. The advantage with the drops (as opposed to tablets) is that you can use a very small dose to treat the extreme emotional stress. For example, two drops might do alot of good. I am pretty sure it is available in the UK, since it is available in Australia and New Zealand. Here is an image: https://www.reddit.com/media?url=https://preview.redd.it/dzzis0i5xla71.jpg?auto=webp&s=e60f053cd793a25d52b374be17628ecb67d83c79
In the old days, people with ME were prescribed clonazepam (Klonopin) for sleep. The problem is, as I mentioned, that it is very habit forming - but a couple of drops of Rivotril - on an occasional basis, rather than on a regular basis - can be very helpful.

 

[Marylib]

@SpinachHands ,another med they hand out these days for sleep is quentiapine. If you get any of that for your partner - use just tiny slivers of the tablet to check for tolerance. You can make the tiny slivers using a pill cutter or single-edge razor blade. Quentiapine is kind of a massive antihistamine - came to be used for psychosis, etc. I only use it for emergencies in terms of days of not being able to sleep. For me, it kicks in the next day - so I sleep through that day.
In terms of your partner's mental state - there is only so much you can do in terms of advice for them.
Take good care of yourself and I hope my words provide some hope that you can eventually find a med to help them sleep.

 

[SpinachHands]

Some updates now I've spoken to the GP and LDN pharmacist. The GP, as predicted, couldn't help with whatever reaction they're having to the LDN, but prescribed Zopiclone for sleeping on nights where they're not using antihistamines, more diazepam, and Montelukast to help with inflammatory responses.
The pharmacist was much more helpful (she's honestly the one medical professional I've spoken to that actually seems knowledgeable about ME, can highly recommend Dickson's pharmacy for UK folks). She said this kind of response can happen if your opiate receptors aren't used to being activated/deactivated in this way and can send the body into an inflammatory response. She was concerned that it's still lasting this long after stopping the LDN and that something else might be at play in their body that's aggravating an inflammatory response. Where they've been bedbound for so long her first thought was vitamin D or B deficiencies, those could also explain the muscle twitches/spasms. Luckily I have an at-home test for vit D deficiency so will try that soon.

She also suggested MCAS which I had already been thinking about, and suggested antihistamines or montelukast. My partner is not well enough to try and exclusion diet for histamines but will see how they get on with a daily Montelukast.

She also suggested an active virus, which I had ALSO been considering (I swear she could read my mind). Unfortunately the GP said swab testing for infections or viruses would be pointless unless it was currently active or symptomatic, and would be hard to narrow down which if any viruses they have. The pharmacist said I could look into private or functional medicine doctors and recommended some near me. She said Valcyclovir is often used, and has shown promise in long COVID (which is what I had been researching!), but I'd probably have to go private for a prescription. Luckily it's also pretty easy to just get from boots or superdrug online if you're willing to lie a little.....(she didn't say that, that's from my own research!)

I don't know if anyone is interested in this update, but posting in case anyone experiences anything similar with LDN and is interested in what works! Their symptoms/reaction flared up massively when they woke up again, eased off after about 6 hours, came back a little 6 hours later but not as bad. Hoping it stays stable now so they can get some sleep soon.
(And then it's time for me to log into work and explain where I've been...luckily my manager is an angel)

 

[hapl808]

That sounds like a wonderful pharmacist - rare to find someone like that.

One caution is that Montekulast is known to have potential mental health side effects, and since your partner is already struggling with that, possibly research that a bit. It may still be worth it and many have no issues, but just something to be aware of in case their mental state changes.

 

[L'engle]

The first time I took a very small amount of LDN I couldn't sleep for three days. It normalized eventually.

 

[YippeeKi YOW !!]

My first thought is it sounds like your patenter’s nervous system is very agitated. Can they drink chamomile tea and try calming breathing exercises?

I agree with @Hope_eternal ..... this sounds like a neuro isssue and a severely dysregulated sympathetic an parasympathetic nervous system.... it's absolute hell and while your partner in this state of discombobulation, they're inot in control of what they say, what theey do, what theey think, or even if they think ....they only know the wrenchng agony of the anxiety, panic, and derealization .

As I; know you 're aware (this is for subsequent readers who might not), LDN is an opioid antagonist, which it sounds lije is working on your partners internal endogneous opioid receptrs, etc ....

I speak from experience with similar issues, tho not LDN ....I'm going thru similar upheavals due to a deeply vicious COVID that my loving hub, DB, brought home unknowingly. I thought I was going to tear my skin off ..... was able to do just enough research (bad brain fog, fatigue, massively reduced brain function and memory, to determine that taurine and/ir GABA would be worth trying, and they both have been extremely helpfful,

Taurine is an amino acid and a precursor to GABA, which is what your partner needs right now (GABA is the primary calming neurrotransmitter in your brain, balancing glutamate, the prinary excitatory neuro. GABA is gamma-amino-butyric-acid, similar in activity, tho way weaker, to benzos, but without the vdery considerable and extremely real dangers of habituation, addictian, tolerance withdrrawl and a fasst track back into he darkest bowels of hell....

If you have benzzos, use the with extreme caution. Some people can become habituated in less than a week, and they;re the ones that hae the worst time getting off of them after that ..... diazepam (Vaium) would be the beenzo of choice due to its extremely long half life, betweem 50 and 74 hours, which allows for wider spacing intervals between doses, andd slowr potential habituation/addiction. I often hear Klonipin referred to as a long acting benzo, but it totally, definite;y IS NOT.

The received wisdom is that PharmaGABA (the only kind you would wantt to consider, more pottent and more effective than anything labeled as just lain GABA) is useless because it can;t cross the blood/brain barrier, and therefore would have no effect. This long held belief is being reconsidered right now, slwoly and methodically. What everyone, iincluding me til recently, overlookedd is that there are GABA receptors all over your body .... in your lungs, liver, kidneys, and espcially your gut, so there are many receptors it can work on. It also helps with sleep, tho not as dramatically as benzos. Klonopin is not only highly addictive, it's screaming hell to get off of, and if a problem develops with me, your Dr will be no help at all, denying even the possibility of tthe effects you're dealig with.

THORNE LABS PharmaGABA iss excellent, and PureEnncapsulations Taurine is also extremely good, at least in my experience.

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.

THIS !!!!! This is a brilliant suggestion @Wishful, ad I wish I;d thought of it. But then, right now I wish I could thnk at all ....

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.

People are just so ..... fun.

Alsso, don;t buy any aluminum hats. They never fit and they make you look so 1980's ....

My partner is still in extreme emotional distress after waking and is terrified, and is even threatening me.

Beenn there, done that .... last month, I was accusing DB of deliberately trying to kill me (he's the one who broughtt home the COVID tht;s pitched me into the deepest, dankest bowels of hell for the last 8 months, and isnt done with me yet).

Then I begged him to bring me a gun. Then I wailed on and on about how I knew that I was dying, that there was no coming back fro this, that my life was over, that I'd never recover any of who or wht I was before the flucking COVID, and blah blah blah yadda yadda blah ....

She said this kind of response can happen if your opiate receptors aren't used to being activated/deactivated in this way and can send the body into an inflammatory response. She was concerned that it's still lasting this long after stopping the LDN and that something else might be at play in their body that's aggravating an inflammatory response.

I don;t fully agree with her, and she;s doing what all medical professionals do ..... the balme is always on the patient. In this case,, your partners opioid receptors. They;ll never admit that ANY drug they prescribed, recommended, dispensed in the form of free samples or hope tto get future benefits from the parent company of (wow .... convoluted syntax and sentence.... apologies) would have any but the most rainbows-and-unicorns effects, and NEVER any but the most modest side effects. If any.

When your brain suddenly gets slammed with something designed to jam up its opioid rreceptors, disruption should be expected. Especially by a professional. And the degree and duration of that disruption will vary dramatically from person to person. Your partner sounds like they had a highly sensitive reactive system. This is often the case with highly intelligent and/or hghly creative people, tho like all generalizations, not always the case.

I agree that D3 etc should be on you list down the road, but not right now. And I marvel that medical professionals who generally spend any waking hour they're not on the gold course or turning a buck in offices, exam roosms, and hospitals demeaning and dissing supps, vits, herbs, etc, would suddenly be shifting the spotlight to them at this particualr time .....

But in fairness, your pharmacist sounds like they;re engaged, concerned, and genuinely trried to help without violating the uspoken code of ALL medical professionals: that drugs weren;t the problem or issue, that those concernns are ALWAYS the patient;s fault or responsibility, that no colleague of theirs ever did anything wrong or careless and especially, that NO SIDE EFFECT YO;RE HAVING IS THE RESULT OF THE DRUG YOU WERRE PRESCRIBED. EVER.. NDER ANY CIRCUMSTANCES.....

he also suggested an active virus, which I had ALSO been considering (I swear she could read my mind).

I agree with youu both. My condition and hellish circumstances are definitely the result of the COVID virus, and as I was reading your OP, that thought came to me alnost immediately ..... worth investigating ....

I don't know if anyone is interested in this update, but posting in case anyone experiences anything similar with LDN and is interested in what works! Their symptoms/reaction flared up massively when they woke up again, eased off after about 6 hours, came back a little 6 hours later but not as bad

Are you seriois ?????? LDN is second only to mestonin in these threads in terms of active, on-going interest and concern. Yourre going a real service by posting, and by keeping us in the loop as things change orr develop ....

What is your partner being treated with right now? The 6 hour intervals suggest a shorter acting benzo, or possibly a system so overwhemled by the LDN that even longer-acting meds are limited in their normal action

One caution is that Montekulast is known to have potential mental health side effects, and since your partner is already struggling with that, possibly research that a bit. It may still be worth it and many have no issues, but just something to be aware of in case their mental state changes

Again, totally agree .... especially after the reactions to LDN. There have to be better options .....

And speaking of research. DO research the ttaurine and PharmaGABA ..... don;t takee my word for it .... check out any potential contraindications or drug/supp interacctions that might be troublesome ....

Am hoping that the worst is over for you and your partnerr, and that the road is defiitely towards the light and home. Just know youre going to be all right, ths will pass, but keep a vigilant eye on things til it doees and even a litte after that.

And chck out @hapl808 's suggestionn in their post above to seek out forums for LDN specifically. There's a wealth of information in all these sources, and theybbmay have unput that you couldn;t get here ....

Apolgies for the numerous, endless typos .... dn;t have the stamina orr energy to go bak and correct them ... think of reading this as a sort of ..... adveture.

 

[YippeeKi YOW !!]

@L'engle , @Marylib , @Wishful , @hapl808 ..... it;s good to see y'all .... I;ve been gone for a looooong time,, fighting thrru these deeply unsettling and unusual reactiions to the COVID infection for 8 flucking months now. I really thought it would kill me. And based on prrevious experience,, I;ll probably think tht agaiin tomorrow. It;s the Noir Groundhog Day Effect .... I'll get these occasional, brief little windows where it genuinely feels like I'm back to being myself, but after another night of tossing and turning and getting little naps instead of dee sleep, I wke up, bac in screaing hell again. It;s horrible .....

But you guys are great !!!

 

[YippeeKi YOW !!]

@linusbert

And great to see you again, too, you wag !!!!!

 

[linusbert]

hey welcome back

 

[lenora]

It's amazing what a good pharmacist can do. I've encouraged people to reach out to them for many years. Please don't think the people working behind the counter are pharmacists, they aren't.

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., although they may falter somewhat. Most are good people who want to help. Yours, Lenora

 

[SpinachHands]

I agree with @Hope_eternal ..... this sounds like a neuro isssue and a severely dysregulated sympathetic an parasympathetic nervous system.... it's absolute hell and while your partner in this state of discombobulation, they're inot in control of what they say, what theey do, what theey think, or even if they think ....they only know the wrenchng agony of the anxiety, panic, and derealization .

As I; know you 're aware (this is for subsequent readers who might not), LDN is an opioid antagonist, which it sounds lije is working on your partners internal endogneous opioid receptrs, etc ....

I speak from experience with similar issues, tho not LDN ....I'm going thru similar upheavals due to a deeply vicious COVID that my loving hub, DB, brought home unknowingly. I thought I was going to tear my skin off ..... was able to do just enough research (bad brain fog, fatigue, massively reduced brain function and memory, to determine that taurine and/ir GABA would be worth trying, and they both have been extremely helpfful,

Taurine is an amino acid and a precursor to GABA, which is what your partner needs right now (GABA is the primary calming neurrotransmitter in your brain, balancing glutamate, the prinary excitatory neuro. GABA is gamma-amino-butyric-acid, similar in activity, tho way weaker, to benzos, but without the vdery considerable and extremely real dangers of habituation, addictian, tolerance withdrrawl and a fasst track back into he darkest bowels of hell....

If you have benzzos, use the with extreme caution. Some people can become habituated in less than a week, and they;re the ones that hae the worst time getting off of them after that ..... diazepam (Vaium) would be the beenzo of choice due to its extremely long half life, betweem 50 and 74 hours, which allows for wider spacing intervals between doses, andd slowr potential habituation/addiction. I often hear Klonipin referred to as a long acting benzo, but it totally, definite;y IS NOT.

The received wisdom is that PharmaGABA (the only kind you would wantt to consider, more pottent and more effective than anything labeled as just lain GABA) is useless because it can;t cross the blood/brain barrier, and therefore would have no effect. This long held belief is being reconsidered right now, slwoly and methodically. What everyone, iincluding me til recently, overlookedd is that there are GABA receptors all over your body .... in your lungs, liver, kidneys, and espcially your gut, so there are many receptors it can work on. It also helps with sleep, tho not as dramatically as benzos. Klonopin is not only highly addictive, it's screaming hell to get off of, and if a problem develops with me, your Dr will be no help at all, denying even the possibility of tthe effects you're dealig with.

THORNE LABS PharmaGABA iss excellent, and PureEnncapsulations Taurine is also extremely good, at least in my experience.

THIS !!!!! This is a brilliant suggestion @Wishful, ad I wish I;d thought of it. But then, right now I wish I could thnk at all ....

People are just so ..... fun.

Alsso, don;t buy any aluminum hats. They never fit and they make you look so 1980's ....

Beenn there, done that .... last month, I was accusing DB of deliberately trying to kill me (he's the one who broughtt home the COVID tht;s pitched me into the deepest, dankest bowels of hell for the last 8 months, and isnt done with me yet).

Then I begged him to bring me a gun. Then I wailed on and on about how I knew that I was dying, that there was no coming back fro this, that my life was over, that I'd never recover any of who or wht I was before the flucking COVID, and blah blah blah yadda yadda blah ....

I don;t fully agree with her, and she;s doing what all medical professionals do ..... the balme is always on the patient. In this case,, your partners opioid receptors. They;ll never admit that ANY drug they prescribed, recommended, dispensed in the form of free samples or hope tto get future benefits from the parent company of (wow .... convoluted syntax and sentence.... apologies) would have any but the most rainbows-and-unicorns effects, and NEVER any but the most modest side effects. If any.

When your brain suddenly gets slammed with something designed to jam up its opioid rreceptors, disruption should be expected. Especially by a professional. And the degree and duration of that disruption will vary dramatically from person to person. Your partner sounds like they had a highly sensitive reactive system. This is often the case with highly intelligent and/or hghly creative people, tho like all generalizations, not always the case.

I agree that D3 etc should be on you list down the road, but not right now. And I marvel that medical professionals who generally spend any waking hour they're not on the gold course or turning a buck in offices, exam roosms, and hospitals demeaning and dissing supps, vits, herbs, etc, would suddenly be shifting the spotlight to them at this particualr time .....

But in fairness, your pharmacist sounds like they;re engaged, concerned, and genuinely trried to help without violating the uspoken code of ALL medical professionals: that drugs weren;t the problem or issue, that those concernns are ALWAYS the patient;s fault or responsibility, that no colleague of theirs ever did anything wrong or careless and especially, that NO SIDE EFFECT YO;RE HAVING IS THE RESULT OF THE DRUG YOU WERRE PRESCRIBED. EVER.. NDER ANY CIRCUMSTANCES.....

I agree with youu both. My condition and hellish circumstances are definitely the result of the COVID virus, and as I was reading your OP, that thought came to me alnost immediately ..... worth investigating ....

Are you seriois ?????? LDN is second only to mestonin in these threads in terms of active, on-going interest and concern. Yourre going a real service by posting, and by keeping us in the loop as things change orr develop ....

What is your partner being treated with right now? The 6 hour intervals suggest a shorter acting benzo, or possibly a system so overwhemled by the LDN that even longer-acting meds are limited in their normal action

Again, totally agree .... especially after the reactions to LDN. There have to be better options .....

And speaking of research. DO research the ttaurine and PharmaGABA ..... don;t takee my word for it .... check out any potential contraindications or drug/supp interacctions that might be troublesome ....

Am hoping that the worst is over for you and your partnerr, and that the road is defiitely towards the light and home. Just know youre going to be all right, ths will pass, but keep a vigilant eye on things til it doees and even a litte after that.

And chck out @hapl808 's suggestionn in their post above to seek out forums for LDN specifically. There's a wealth of information in all these sources, and theybbmay have unput that you couldn;t get here ....

Apolgies for the numerous, endless typos .... dn;t have the stamina orr energy to go bak and correct them ... think of reading this as a sort of ..... adveture.

Thank you so much for this amazingly in depth and detailed reply!! I know it must have been tiring so I appreciate the effort a lot <3
I can't seem to figure out how to do quoting on here so will reply to your points in order (I'm in my twenties with the tech ability of a 100 year old)

- I agree there's something discombobulating in their nervous system, immune system, all and any systems probably. Can't tell if the LDN caused it or exacerbated something that was already there. They're too severe for a doctor to examine them or take blood so it is a guessing game without being able to get a good look at what's going on inside

- thank you for the recommendations of taurine and GABA! I had already been looking into GABA, but if it could help mend whatever the LDN has done to their opiate receptors and dopamine levels, that'll be a good step in healing some damage. Thank you for explaining exactly how it works as well, I'm not a very scientifically minded person so trying to explain to my partner theories on what's wrong or what new meds can do, I come off like I have no clue what I'm talking about

- trying to be careful with the diazepam still. They've been trying to only use max one a week the past few months, but this week has been stressful enough to need more. They're only 2mg so one doctor I spoke to said up to 2 a day could be ok, but still being cautious and saving them for absolute panic mode

- I've posted on the LDN Reddit which had some suggestions, will try the Facebook groups too

- I am actually relieved to hear that you flipped out on DB, as mean as that may sound! Everyone on Reddit was adamant they would never say a single bad thing to their carer, and would always be thankful and kind, which had me thinking something was really wrong with my partner or even our relationship! They are still having bouts of anger, and some of the things they've said will stay with me. I'm trying not to dismiss them, as I know there is real hurt and fear behind what they say, but all I can do is my best. If that's not good enough for them, all I can do is to keep trying. I hope we can talk once their head is clearer (and they've had more sleep).

- Yeah the pharmacist has said I can call back any time too, plus she's given plenty of advice outside of LDN matters, like where to get home blood tests, specialists, papers and research she's heard of. Wish she could be my partner's main doctors tbh! But unfortunately, it also sounds like she doesn't really know what's wrong still. Only that this is a common reaction, but it's uncommon to last this long

- I did not know that about Montelukast so thank you for the warning! Of course the doctor told me it's "very safe, we give it to children!"...


- The current update is:

Yesterday they took a zopiclone again, as symptoms started flaring up again as they were trying to sleep, so the choice was force sleep or wait unknown hours until it passed again. They slept for four hours before the symptoms woke them up again. After another 12 hours (during which I took some naps and called 111 again, waiting for a call back still), the feeling started easing, they took some promethazine and fell asleep.

The Montelukast, and non-drowsy antihistamines did nothing, and ibuprofen made them feel worse, so despite this seeming like inflammation, no inflammation treatments worked.

While they were awake (between a lot of emotions, and even a threat from them to end our relationship if I didn't admit it was all my fault), we spitballed 3 new theories.
1. They are allergic to LDN or the filler, and what we thought were worsening side effects was actually a prolonged allergic reaction. The reason they're still bad despite now stopping the meds, and the reason no allergy meds are helping, is because they're now just recovering from the damage done. (I'm least sold on this theory, I'm not sure but I don't think this is how allergic reactions work. It would support my MCAS theory, but then surely the antihistamines or montelukast would work)
2. Hyperthyroidism fits all the symptoms, and LDN could have aggravated their thyroid into overdrive if this was already underlying. The downside is treatment would be beta blockers which is bad for their asthma (however I have read that cardioselective beta blockers are ok). I also don't think the GP will prescribe them without a thyroid function blood test. We do have an at home finger prick test kit, but last time we tried they were too tired/stressed after 5-10mins, which wasn't enough time to fill the tube. I got a replacement so hope we can try again.
3. Vitamin B deficiency- the pharmacist also thought this, especially as they're experiencing muscle tremors/spasms, and all the symptoms fit. No idea why the LDN would affect this but maybe it's a bad timing coincidence. I gave them a high strength B12 (they normally take one normal one), and their symptoms did ease up not long after....could be a coincidence, but we can try again tomorrow and see. Have ordered B-complex vitamins. Sadly the only at home test kits I could find were the same as the thyroid one, no rapid ones that only need a drop of blood, but if we can treat it diagnosis may not be necessary.

Anyway, that's a long reply sorry so I'll leave things there! Appreciate everyone who has tried to help me and my partner navigate this weird horrible reaction to low dose naltrexone (if it's even to do with that).
I hope our relationship hasn't been too fractured by the things we've both said to eachother. 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. I'm trying to accept responsibility and hear their hurt, but also trying to stand my ground when it turns to insults. I'll be a scapegoat if they need something to blame, but I won't lie and say I accept full responsibility for all of their suffering, because I unfortunately can't prevent everything that could hurt them, even though I wish I could. I know I'm doing my best for them, AND I'm making mistakes. I know they want better care, and I'm really trying to give it to them, but this is the best I've got.

 

[YippeeKi YOW !!]

I can't seem to figure out how to do quoting on here so will reply to your points in order (I'm in my twenties with the tech ability of a 100 year old)

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 ....

They're too severe for a doctor to examine them or take blood so it is a guessing game without being able to get a good look at what's going on inside

That's why I only recommended safe, low risk options. I know wwhat fighting blind is like ....

Thank you so much for this amazingly in depth and detailed reply!! I know it must have been tiring so I appreciate the effort a lot <3understand

That's incredibly sweet of you, and you're right. It's tough with 3 brain cells, which is what I'm rolling with right now .... thank you so much for that .... ery thoughty of you ....

thank you for the recommendations of taurine and GABA! I had already been looking into GABA, but if it could help mend whatever the LDN has done to their opiate receptors and dopamine levels, that'll be a good step in healing some damage

It'll be a help, not sure of much else .... will try to get back to you with more mechanisms of action ....

trying to be careful with the diazepam still. They've been trying to only use max one a week the past few months, but this week has been stressful enough to need more. They're only 2mg so one doctor I spoke to said up to 2 a day could be ok, but still being cautious and saving them for absolute panic mode

Being careful is wise, but if it helps, consider thiis an emergency.

This is what I wouldd do, may not be right for you, but thought I;;d mention it as a possible way to ease your poor partner thru this screaming hell .... try giving them 1/2 a 2 mg (rremeberr, the half life is very very long) amd themm the other half wwhen symptoms start flaring again. After the first few doses, there'll be overlap so each addittional dose should actually have more heft than the one before .... see if you Dr is OK with 3 a day til this is over, that'll give you 6 doses ....

I am actually relieved to hear that you flipped out on DB, as mean as that may sound!

Doesn;t sound mean at all. I know exxactly what you mean. It;s the reason I was willing to look like that crazed bag lady with 85 cats and a tin foil hat ....

Everyone on Reddit was adamant they would never say a single bad thing to their carer, and would always be thankful and kind, which had me thinking something was really wrong with my partner or even our relationship!

Yeah. Right.

I tend to avoid Reddit forr the most part. they all seem to be very immature and sometimes, not very bright, and tthey have more attitude tthat the Kardashians on crack to a factor of 10 ....

Ignore them. They'd be screaming profanities and lunging for the kitchen knives if they were in your sitch ....

I'm trying not to dismiss them, as I know there is real hurt and fear behind what they say, but all I can do is my best.

True. And they;re in so many ddimensions of pain and hell that they can;t realy be held responsible. Youee doing eveything you can. That has to be enough. Andd in the final analysis, it will be.

It;s just that right now, yo cold be God Almiighty hisself and that wouldn;t be enough. Put themi on mute with a sweet sweet smile ..... ttry not to hear what they say. They doesnt mean it. They probably dn;t eveen register wht they;re sayng or how it impats you ...

I hope we can talk once their head is clearer (and they've had more sleep).

You def will be. In the meantime, avoid any conversaion as much as possible, other than soothing and calming and ministering ....

Of course the doctor told me it's "very safe, we give it to children!"...

Uh huh. I wonder if he'd give it to his children tho ....Doctors are lying bastards most of the time, and they;ll say anything that gets them where they need to go ...

so the choice was force sleep or wait unknown hours until it passed again.

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 ....

so despite this seeming like inflammation, no inflammation treatments worked.

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 .....

They are allergic to LDN or the filler,

More likelyy to the filler, but the reaction is too extremee for that. I agfreee with tourr rreserrvationsa noiutt the hypotesis ...

Hyperthyroidism fits all the symptoms,

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 .... donlt llet the Dr fob you off with a TSH analysis ..... that;s ridiculous bull shite, its produced by the pituitary gland and tells you nothing about the functioing of your atual thyroid ...

Vitamin B deficiency- the pharmacist also thought this,

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 .... as long as they dnlt react badly to them,, keepp giving them when needed ....

especially as they're experiencing muscle tremors/spasms,

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 ....

this weird horrible reaction to low dose naltrexone (if it's even to do with that).

I think it is. Remember Occam's Razor and think horse, not zebra, cause all thigs being equal, the simplest answer is usually the right onee. Also if it walks like a duck, looks like a duck, quacks likee a duck, it's a flucking ducck ....

I hope our relationship hasn't been too fractured by the things we've both said to eachother.

There'll probably be a periodd of walking on eggs and apologizing all over the pplace to each other, but believe me, if DB didnt drown me in the bathtub, you guys will be golden. I didnlt lash out just the once, doncha know, and I can be rreally eloquent in my shrieking andd condemnations .... but the ony thing to my credit is that I never once remindded him that he was the tthouughtleess lout that gave me the flucking COVID and put me in this horrible, horrible place ....

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

Tell them that as soon as The Powers That Be issue you your halo and wings, yo;ll let them know, In the mmenatime, they need to approach you as a mere mortal, with mortal fallibility ....

I'm trying to accept responsibility and hear their hurt, but also trying to stand my ground when it turns to insults.

De,icate balance, razor's edgge and all, but the right tack too take. No need to be mean (I'm looking at you, Yippee), but no need to selff flagellate or let them do it for you. Stand youu ground with kindnesss. And a nbig stick.

OK, tthe stick is optional and probably not a good option givrn the circumstnaces.....

I know they want better care, and I'm really trying to give it to them, but this is the best I've got.

I think youur doing incfrediblly well under wretchedly hard and unyyielding circumstances. Really ....