Severe LDN side effects continuing even after stopping the medication?

[hapl808]

Also, I've been dealing with this for 25 years. I screwed up so many times - honestly for the first 20 years. It took me that long to start trusting myself over doctors and loved ones, over what I 'should' be able to do. The number of mistakes I made that led to permanent losses in function - from medications, or not taking medications, or pushing through, or allergic exposures, etc. You have minimal experience and are doing 100x better than I did (or really could do) 20 years ago.

 

[Strawberry]

@SpinachHands I’m so sorry you are having to go through this, and that it is causing stress between you and your partner. I’m sure you know, but just a simple “I’m sorry“ can go a long way, and just convince yourself that they WANT to say it back, but are unable to at the moment. You are doing the absolute best that you can, we all make mistakes and learn along the way.

Here is a virtual internet hug of emotional support, I hope it gets better soon!

 

[SpinachHands]

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.

In a more lucid moment, they explained their feelings in a way that did actually help me to understand their hurt better. They gave the example "imagine you tried to help my sister, by cleaning and polishing her floor. But she trips and falls. If she just sprains her ankle, of course I'd forgive you. But if she fell badly and was paralysed, or even hit her head and died, even if I tried and really wanted to, I don't think I could forgive you. It's the same mistake, and even though your intentions were good, it's the level of hurt it causes that's important to me."
This I can understand, and I don't think is irrational. They want to forgive me, and trust me. They know I didn't intentionally hurt them, and that maybe it wouldn't have hurt them. But I still could have taken more care, and that mistake has hurt them, even unintentionally. I know they are trying and want to recover, and want to forgive me. Even if I'd feel differently if the roles were reversed, that's how they feel.
They know that things could be a lot worse, that others in their situation have had worse care, but unfortunately that still doesn't make them feel any better. We're both going to keep trying our best though, get them through this, and hopefully heal our relationship too.

 

[Judee]

I know your partner is having a hard time right now. Still I wonder if it might not help you both if they directed the treatment decision making from now on and just let you be the one who implements what they decide.

You could be like a personal assistant taking notes of what they want to do and then doing the leg work for them. If they want, you could also offer to do the research for any questions they have so they can make more informed decisions but again leaving the actual decision making to them.

It just seems like so much on your shoulders to be directing the care of another human being and from what you've written it's easy to see how stressful it is for both of you doing it that way.

Anyway just a thought.

 

[Scarlett*54]

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 🤞

CBD has helped me so much also!

 

[hapl808]

But if she fell badly and was paralysed, or even hit her head and died, even if I tried and really wanted to, I don't think I could forgive you. It's the same mistake, and even though your intentions were good, it's the level of hurt it causes that's important to me.

I understand that, just not the way I feel. Now, if he warned you not to polish the floor repeatedly and you insisted on doing it anyways - then I understand. That was my issue with my partner. I kept telling her what she was doing was making me worse, but she thought it was just an excuse and she kept pushing me while my health declined. Many months later when she finally accepted it, the damage was permanent.

I know your partner is having a hard time right now. Still I wonder if it might not help you both if they directed the treatment decision making from now on and just let you be the one who implements what they decide.

This is the issue. If they're well enough to give instructions, it should be their decision. If they're not, then you're doing the best you can.

I've spent every day researching for 20 years, and I still make mistakes or bad judgments. You have minimal background and are doing a great job.

Sorry for the stress.

 

[SpinachHands]

I know your partner is having a hard time right now. Still I wonder if it might not help you both if they directed the treatment decision making from now on and just let you be the one who implements what they decide.

You could be like a personal assistant taking notes of what they want to do and then doing the leg work for them. If they want, you could also offer to do the research for any questions they have so they can make more informed decisions but again leaving the actual decision making to them.

It just seems like so much on your shoulders to be directing the care of another human being and from what you've written it's easy to see how stressful it is for both of you doing it that way.

Anyway just a thought.

This is a good idea, and one I hope we can do in the future. At the moment they've said they don't feel well enough to make many decisions from the energy it takes, even asking which soup they'd like is too much. It was also my partner who asked to keep taking the LDN even when the side effects got bad- they needed me to step in and say it was time to stop. For now what I've done, is asked a good friend of theirs who I know is good at this kind of thing to be my double-checked (he once spent months researching and testing to find what the best incense was 😅). So any new supplement or medicine I find, I'm asking him to go and research it separately for me, to check I haven't missed anything. And if course at the end of the day, I'm still explaining every new thing to my partner and asking for their ok before giving it to them.

 

[SpinachHands]

Update: Things were a little better yesterday and the day before but it flared up massively again for several hours this morning, after which M (my partner) fell asleep for a few hours. I've been trying to get the pharmacist and GP to speak to me again to see if they have anything else that can calm their nervous system down. I still don't fully understand why the LDN caused this reaction, but so far everything I've tried has been a temporary reliever, not a fix. I've been looking into beta blockers more which I think could be the way, if the GP is willing to prescribe them off-label. I've ordered a blood pressure monitor too, as if it's spiking/falling that could help get the right medicine.

M has been begging for something or someone to help, any answer why this is happening or how long it will last. Even after trawling through this forum and medical papers, I can't give them any certain answers or solutions, which is the most painful thing. They've said that in the last ten days, when it's at its best and least intense it feels like a severe panic attack. They can't rest, and they are out of strength. All I can do is give them frozen flannels, herbal tea, some CBD, and tell them what they don't want to hear- they need to keep being strong, for an unknown length of time and intensity, and endure (in as comforting a way as I can).

If anyone has had their nervous system go into overdrive like this, let me know! I know every person is different, but the fuller picture I can get, the better.

 

[WinterWren]

Sorry if you’ve already mentioned this but have you looked through posts on the Facebook group LDN for ME/CFS and Fibromyalgia (it’s a slightly longer name but that should bring it up)? I searched it and found similar experiences when I had a bad reaction to LDN. My reaction was pretty different than what you’re describing but maybe you’d find something on there? People tend to leave the group once they stop LDN so I found searching posts better than asking questions. There’s also an ultra low dose LDN group and they might be good to look at too.

 

[wolves2626]

I did have hard time with sleeping while taking ldn for neuropathy. the dose was only 0.25 mg and it made my neuropathy worse. however side effects or the effects of ldn stopped after a while I stopped.

I am no expert by any means but it could enhance the immune system and overdrive. it could fight with dormant viruses and etc. how did I know my tinea got lighter in color or in some places it went away. I stopped for two reason it made neuropathy worse and insomnia.

mostly in blogs and etc. being told insomnia and other side effects went in time however everyone is different. also nothing you could do. in order to get better one needs to try these solutions drugs supplements and some time things might went not in an expected way. we have to try for ourselves and for our loved ones.

 

[lenora]

What did the Dr. say about the panic attacks? It seems to me that if they're brought under control, then they may do better overall. I know many people are very much against meds for them, I understand, but sometimes there are things totally out of our control. A panic attack is one, and unless you've experienced the worst type, it's very hard to understand.

Also, it sounds like you're both on your way if they did well for a short time. It may be better today...I hope so.
Yours, Lenora

 

[SpinachHands]

What did the Dr. say about the panic attacks? It seems to me that if they're brought under control, then they may do better overall. I know many people are very much against meds for them, I understand, but sometimes there are things totally out of our control. A panic attack is one, and unless you've experienced the worst type, it's very hard to understand.

Also, it sounds like you're both on your way if they did well for a short time. It may be better today...I hope so.
Yours, Lenora

Thanks for asking Lenora, this actually leads nicely into the most recent update- I got ghosted by their doctor! (For those not up to date with the slang, ghosted=ignored).
I requested an urgent GP appointment on Wednesday, as I hadn't spoken to one since figuring out this was nervous system overload, not inflammation or infection, and wanted to ask about beta blockers. They asked if I could wait until the appointment I have scheduled in next week and I said no, my partner can barely cope with another minute of this, let alone a week. She said they had nothing available that day, but they would ask their regular doctor to call me the next morning. Thursday morning comes and goes with no phonecall...I ring up and they say the doctor is free after 4 so they would ask her to call then.....Thursday comes and goes with no call. Friday morning I ring again, they say the doctor didn't think it was urgent and to wait until next week, but I'm welcome to speak to a mental health nurse if I was struggling in the meantime.
....yeah, it took a lot of effort to not flip out at that. Finally she said a different doctor would call me that afternoon.
It was one I'd spoken to before- one that had mentioned deconditioning and GET before so I was skeptical but he was somewhat helpful this time. He said beta-blockers were a no go due to my partner's asthma. Even with cardioselective beta blockers they would only prescribe them to someone with asthma in extreme circumstances with a consult from a cardiologist. He did recommend low dose mirtazapine however, which I have been researching since and seems like it could be a shout. He's going to speak to their usual doctor about it, and ask for a psychiatrist consult. I balked at that but he said it's only as they can sometimes prescribe things the GP's can't, he reassured me they understand this isn't psychological, and the panic/anxiety is coming from a physiological problem.

In the meantime we have introduced salt tablets and more water, since a urine test strips showed some dehydration. I think due to the excess energy the increased nervous system activity is causing on their body.
The GABA and Taurine I ordered arrived finally too. I tried the GABA first to make sure it would be ok and it made me quite drowsy and dopey. However my partner said it gave them a little more energy, so something to have earlier in the day maybe. Will try the Taurine today and see if it has a similar effect, or is better for sleep.
This morning their symptoms have pulled a strange 180. Their overheating has turned to feeling cold, their pounding heart has turned to a lowered heart rate, and their agitated restless feeling has turned into a massive energy depletion. I may be being too optimistic, but I'm wondering if this is a sign that their nervous system is finally calming down, and this is their body playing catch-up on rest. Will continue monitoring today and see how things go.

I still haven't heard back from the LDN pharmacist this week. I'd really like to understand more about why it caused this reaction, or how suppressing opiate receptors has led to an increase in sympathetic nervous system activity. It seems to line up with the kind of dysautonomia one gets from POTS, just without any standing causing it. Still no idea when or how it will stop either. I'm hoping time, with some gentle encouragement from the treatments we've been using, will help it regulate itself again back to baseline.

Thanks all as always for your help and for staying tuned. This is such a strange and unpredictable illness, the unknown being the most frightening thing for both of us. Trying to control what we can and understand things don't have a set way of playing out. Taking each day and each symptoms as it comes is frustrating, but all we can do for now until they are able to rest again.

 

[SpinachHands]

I am no expert by any means but it could enhance the immune system and overdrive.

This was one of my theories at the start. I have heard it can increase immune function, so I was wondering if it was a kind of Herx or Flushing reaction. Unfortunately we don't really have an accessible way to test for infections right now, and I wouldn't have thought it would continue this long, especially after stopping LDN two weeks ago now. Either way, I don't know if I have a way to slow down their immune system, so just working on calming the sympathetic nervous system for now, hoping the rest of the body will follow suit.
Sorry you had insomnia issues with LDN, but good to hear my partner's not the only one who's had bad side effects even at such a low dose! May try it again in the future just at 0.1mg for a longer time, or even lower potentially.

 

[lenora]

Hello @SpinachHands....I'm very glad that your partner seems somewhat better today. Let's hope it will continue.

Yes, the "I'll have ?? call you later." Sometimes today's world makes one want to scream. Bad enough that you're ill or are the caretaker, but even worse when something like a call is taken out of your hands. At least there is someone who will help if a mental condition is warranted. Usually at least a PA will return your call. My internist doesn't have one, but a nurse who does.

Then there's the game playing between the doctor's office and the pharmacy. If you weren't sick before, you certainly are now...and that's for healthy people!

You've been a wonderful asset to your partner, and I do hope that they'll remember enough of this to be truly appreciative of you in the future as they regain there personhood. Tough going for both of you. You especially, in many ways.

They should reach a "normal" of sorts and I hope it's soon. Bad times are all part of this illness...but then the day comes when we feel that we can cope and make life easier for those around us.

Going to the same doctor CAN be helpful. It breaks down barriers and the Dr. begins to see the patient as a human being. I'm there with my present internist (who will probably up and now retire!). Medicine is a tough game....everywhere it seems. Just continue to do your best....and think of yourself. Yours, Lenora

 

[SpinachHands]

Update: still no change.
My partner has asked me to ask on here why it's not going yet. Their sympathetic nervous system is still going into overdrive, or swinging into their parasympathetic on overdrive. It's been three weeks without rest or without this seeming to get any better. They wondered if this is normal, if there's any "normal" for this, or if something else is making it stay this bad.
Thanks all once again

 

[lenora]

Hello@SpinachHands.....I don't really have an answer for you. I guess the only suggestion I would have is to take them to the ER. At least a neurologist could check him out, tell you about LDN and, if possible, give him something to make him sleep. I know you hate to do this and I hate to tell you that it's probably what I would do under the circumstances...with the knowledge we share.

I have found that if I go to the ER at night, it's quiet....much more so than during the day. I've show up at 2:00 a.m.(with my husband) and found no one in the waiting room. The next day the hallways were lined with people with COVID. People tend to wait until until the daylight hours, unless there is a sick child or a sudden emergency.

Apart from that I simply don't have the knowledge you need. Your partner has gone a very long time without sleep and, I'm sure, it has been just as long for you.

Perhaps you'll hear from someone who can advise you otherwise....I don't know. Good luck. Yours, Lenora

 

[Strawberry]

Hugs @SpinachHands ! I’m so sorry for you, and so sorry that they aren’t improving. I know I just had a hard lesson with B vitamins getting diminished, maybe it’s the same for your partner? These refeeding syndromes are beyond me, but maybe it is what is going on? LDN (assumed) caused something that caused extreme chapped lips. I know it is NOTHING compared to you two, but B complex has reduced it ( and maybe eradicated it) in like 5 days. Or it could be the methylene blue. I don’t know which. But I DO know methylene blue is causing die off and herx. I need to be careful from here forward.

Please keep searching the forum, keep communicating, and my absolute best to you! Chapped lips might sound insulting considering what they are going through, but your answers are here on the forum. I promise!