• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

LDN Experiences

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
How long is the sleepiness suppose to last during day when one take LDN???

You are not supposed to have daytime sleepiness. Maybe you will get over it?? For me that means too high a dose but I know you are on a tiny dose.

Sushi
 

penny

Senior Member
Messages
288
Location
Southern California
How long is the sleepiness suppose to last during day when one take LDN???
sleepiness or sleeplessness?
I don't think the first is a normal side effect - for me it's a sign that I'm taking too large of a dose and my body isn't clearing it.

Sleeplessness on the other hand is a pretty common start up side effect, and while it seems to vary, it seems that a couple of weeks at a dose is not atypical (though just a guess).

*whoops, just saw sushi's reply, on edit "what she said" : )
 

OverTheHills

Senior Member
Messages
465
Location
New Zealand
sleepiness or sleeplessness?
I don't think the first is a normal side effect - for me it's a sign that I'm taking too large of a dose and my body isn't clearing it.

Sleeplessness on the other hand is a pretty common start up side effect, and while it seems to vary, it seems that a couple of weeks at a dose is not atypical (though just a guess).

*whoops, just saw sushi's reply, on edit "what she said" : )

Mmm I am just trialling it too (week 1at 0.75 mg a day). I am also getting daytime sleepiness and no real change to night-time sleep amount although I think I am a bit sharper mentally. I have changed to taking my dose in the morning because the sleepiness seems to be delayed ie OK for a while and then sleepy. Really I think I should take it about midday and then the sleepiness will be while I'm in bed, but I fear I will just forget to take it.

OTH
 

penny

Senior Member
Messages
288
Location
Southern California
Mmm I am just trialling it too (week 1at 0.75 mg a day). I am also getting daytime sleepiness and no real change to night-time sleep amount although I think I am a bit sharper mentally. I have changed to taking my dose in the morning because the sleepiness seems to be delayed ie OK for a while and then sleepy. Really I think I should take it about midday and then the sleepiness will be while I'm in bed, but I fear I will just forget to take it.

OTH
Personally the max dosage I've been able to consistently take (without negative side effects) is .55mg, so even .75 could possibly be 'too much' but the fact that you feel sharper mentally seems a good thing, so who knows! I also had anhedonia when my dosage was too high, and certainly didn't feel mentally sharp ;) I haven't tried daytime dosing myself since it didn't disturb my night time sleep much, but that might be just the ticket for you.
 

Marlène

Senior Member
Messages
443
Location
Edegem, Belgium
How long is the sleepiness suppose to last during day when one take LDN???
Sometimes it helps to change the moment when you take it.

For instance, when I take it after 10pm, I have a bad day. But I should not take it before 9.30 pm either.

Sometimes it suffices to change just the time of intake just a little bit.
 

Marlène

Senior Member
Messages
443
Location
Edegem, Belgium
My cfs doctor is starting me on lowdose naltrexone (ldn). She is having me start at .5 mg with the aim of getting me to 1.5 mg after a couple of weeks. I was just wondering what others have experienced with ldn, both positive and negative. My biggest problem has been exercise intolerance, and I am especially interested if any improvement has been seen in this regard. You can PM me if you don't feel comfortable posting in the forum.

I use it for a few years now and it made a major difference in my PENE and neurological complaints. The toughest part were the first 6-8 months, it felt like herxheimer all the way.

I'm so happy I did not give up. It changed my life drastically. I was 80-90% bedridden. Now I sleep 1,5 hour a day only, I can drive a car, read a book, listen to music, ...
 

Abha

Abha
Messages
267
Location
UK
I have used LDN in the past...and it seemed to help my condition somewhat.At first I think I had problems(dreams?)at nightime.I think i eventually finished up taking it in the morning.In time i was able to work up to the max amount(4.5?)At that time I visited a doctor in Glasgow in order to get it prescribed.The chemists there(Dicksons?/Glasgow)then sent it to me monthly.I only stopped taking it back in 2011 because I was being treated for Rickettsia(two types)and other co infections.That doctor stopped the LDN because it was sweet(sugary?)(I think)...feeding the parasites/etc...I'm still on Rickettsia (co infections)treatment....but I'm thinking of starting LDN again.Like Hanna, I would like to buy it from some source and make it up myself.Does anyone living in UK/Ireland know of any local suppliers?Has anyone on this Forum used Mexican/Indian pharmacies for obtaining LDN?If so, did you encounter any problems?..Thanks...
 

Hugocfs

Senior Member
Messages
121
Location
U.S.A.
Here's my update. At 3 mg, the daily pain and burning in my shins was completely eliminated. Three days after I got up to 3.5 mg, I felt a little burning coming back. I progressed up to 4 mg and then 4.5 mg at which point the pain was completely back and I developed severe insomnia. I dropped back down to 3 mg with good results. So I plan on staying at this level. So far, I can't say anything for sure about it improving my energy level or p.o.t.s. Maybe with more time I will see some improvement in those departments. Will keep updating if anything changes.
 

Seven7

Seven
Messages
3,444
Location
USA
Here's my update. At 3 mg, the daily pain and burning in my shins was completely eliminated. Three days after I got up to 3.5 mg, I felt a little burning coming back. I progressed up to 4 mg and then 4.5 mg at which point the pain was completely back and I developed severe insomnia. I dropped back down to 3 mg with good results. So I plan on staying at this level. So far, I can't say anything for sure about it improving my energy level or p.o.t.s. Maybe with more time I will see some improvement in those departments. Will keep updating if anything changes.

Hugo I get pain every time I increase, I have to give it like 2 weeks before I know if the new dose will work. I am on 3mg too. I do not get insomnia I am the opposite, I am getting sleepy on it. I am even cutting down on sleep meds.
 

Charles555nc

Senior Member
Messages
572
I got Rosacea from LDN. But I see it as attacking an infection my body wasnt attacking before. I went off of it for 3 months to let the Rosacea calm down, then went back on .5mg LDN and 2 pills of benedry every other night. Im up to 3mg LDN now and seeing even more improvement- even my Rosacea is less.

Improvements in energy, more clear mindedness, sexual function, and general well being.

LDN is very cheap like 35 dollars for a 2 month supply from Skip pharmacy in Florida.
 
Messages
2
Location
Wellington, New Zealand
Mmm I am just trialling it too (week 1at 0.75 mg a day). I am also getting daytime sleepiness and no real change to night-time sleep amount although I think I am a bit sharper mentally. I have changed to taking my dose in the morning because the sleepiness seems to be delayed ie OK for a while and then sleepy. Really I think I should take it about midday and then the sleepiness will be while I'm in bed, but I fear I will just forget to take it.

OTH
Hi, can you share what part of New Zealand that you are from? I am from Wellington, but currently living in Brussels, due to my husband's work. I have started LDN and went straight onto 4.5mg dose, which I think that I should reduce due to the side effects that I am getting, that appear to be making me a lot worse. I also think that the LDN is trying to clear out my system in a rather forceful manner, but I don't won't to give up on LDN. Am I right in saying that Naltrexone 50mg can easily be prescribed by any doctor (thus allowing you to access the drug in NZ) but it is only subsidised by pharmac if you pass a set special authority criteria? Thanks Janice