Low dose Naltrexone

[jackass]

@jackass

have you tried melatonine to sleep as well?

I don't do well on melatonin, it makes me depressed, but the problem wasn't that I didn't sleep, it was my sleep quality that got ruined. I think it may be because naltrexone activates the HPTA axis, which kind of makes me wonder if it really is that great for CFS long-term..

 

[Sushi]

I don't do well on melatonin, it makes me depressed, but the problem wasn't that I didn't sleep, it was my sleep quality that got ruined. I think it may be because naltrexone activates the HPTA axis, which kind of makes me wonder if it really is that great for CFS long-term..

I initially had insomnia with LDN but once I worked up to 3 mg it actually helped sleep a lot. I've been taking it for a long time and ran out for the first time recently. Two days without it and I was back to the old pattern of not getting to sleep before 4 a.m. and waking often. Now that I have restarted, sleep it again much improved.

Sushi

 

[jackass]

I initially had insomnia with LDN but once I worked up to 3 mg it actually helped sleep a lot. I've been taking it for a long time and ran out for the first time recently. Two days without it and I was back to the old pattern of not getting to sleep before 4 a.m. and waking often. Now that I have restarted, sleep it again much improved.

Sushi

Whoa, that's weird! Totally unlike my experience. Maybe I was in fact taking too much (worked up to 4,5 mg), as I can't remember any interference with sleep on low doses.
Do you feel it helps you fall asleep, improve sleep quality or even both? How long have you been on it, if you don't mind me asking?

 

[Sushi]

Whoa, that's weird! Totally unlike my experience. Maybe I was in fact taking too much (worked up to 4,5 mg), as I can't remember any interference with sleep on low doses.
Do you feel it helps you fall asleep, improve sleep quality or even both? How long have you been on it, if you don't mind me asking?

I take 3 mgs. I had worked up to 4.5 but reduced it after a while cause I was groggy in the a.m. It helps both with falling asleep and staying asleep--it actually helps me hugely. I have been taking it for nearly 4 years.

Sushi

 

[maddietod]

What happens if you need emergency or scheduled surgery? What are your doctors' recommendations for clearing the LDN prior to anesthesia?

 

[Sushi]

What happens if you need emergency or scheduled surgery? What are your doctors' recommendations for clearing the LDN prior to anesthesia?

Hi madie,

Not sure who you are asking but I can answer for my individual situation. I clear LDN very quickly. I take it at night and it should be gone by the morning. I suppose I could need emergency surgery during the night, in which case I'd just tell them that I had taken 3 mg LDN xx hours ago and they would have to adjust meds accordingly.

When I had a colonoscopy recently they told me not to take it for 2 days beforehand.

Sushi

 

[maddietod]

Ah, thanks. Dr. Rey told me to stop taking it for a month before surgery - and I was only taking .5 at that time. It sounded a bit excessive to me. Or maybe I misunderstood......it's always hard to be sure!

EDIT: My error, sorry to disrupt this thread with my mistake. I just talked with Dr. Rey and there are no problems with anesthesia and LDN.

 

[bertiedog]

Do many of you who have just started treatment with LDN get symptoms in your head which makes you feel lightheaded and a bit giddy if you look down too quickly? Its a very particular feeling which I don't like but I get it every time I take a dose of 1mg of liquid LDN. I did wonder if it was a reaction to the fillers in the syrup (glycerol, water and Nalorex plus tiny quantities of saccarin sodium, ethanol, simeticone plus hypromellose) because it starts almost immediately after taking it but its confusing because this feeling can last for a couple of hours.

As long as I don't push myself when I feel like this I can cope ok but if say I had to go to a meeting especially if I was chairing it, I don't think I would take it that day.

Pam

 

[desertsky69]

I am just starting to try LDN therapy for my CFS. @ Jackass - I have dealt with CFS for the last 10 years, Insomnia has been one of my symptoms, I have found that , though I am not depressed anymore taking 1 St. Johns tablet a day (Perika Brand has worked best for me) pretty much has rid me of insomnia, the only other problem I will get is when my Epstein barr flares up it tends to give me thyroiditis which gives me a temporary high thyroid condition. I can almost always tell when my thyroiditis kicks in because I will wake up after 2-3 hours of sleep and not be able to fall back asleep. When this happens I take 1-3 Ibuprofen and I always fall back asleep. When I originally got diagnosed with thyroiditis, I asked the doctor how would I treat this since it is only a condition that seems to crop up when I have a virus, he said he would prescribe prescription Ibuprofen. Ever since then when I see these symptoms I take some Ibuprofen.

 

[EtherSpin]

I am just starting to try LDN therapy for my CFS. @ Jackass - I have dealt with CFS for the last 10 years, Insomnia has been one of my symptoms, I have found that , though I am not depressed anymore taking 1 St. Johns tablet a day (Perika Brand has worked best for me) pretty much has rid me of insomnia

wondering if you are many days in and if so, has the LDN helped any further with your sleep ? it makes no difference to me with the actual falling asleep but in the morning a massive difference, if i was woken by noise from the kids id be stuck awake from 7am or so but now, if i wish there is a pleasant sleepiness that will allow me to keep slipping back for little snoozes till about 9:30-10 AM , also, as noted elsewhere in the thread, my body temp has normalised from being high and after decades i can tolerate warm clothing, im losing track but must be almost at the 3 week mark now

 

[desertsky69]

Yeah that is where I get the problem too is after I have been asleep for 2-3 hours, I wake up and can't go back to sleep. Now with, the LDN, it has thrown me into this pattern of waking up after 5 hours of sleep. First night I took it I actually slept for 12 hours, don't know if the LDN had anything to do with that but it was awesome. Since then it has been 5 hours and then I wake up. Many of the reviews of LDN say it can cause insomnia early on but then dissipates so I am hoping it gets better. Some of those 5 hour nights I did fall back asleep after tossing and turning for a half hour and got another 2-3 hours. Like I said though, before the LDN the perika st johns cured my insomnia. And if I did wake up and took an Ibuprofen I went back to sleep shortly thereafter. My guess is either my thyroid or some other gland or organ in my body could have some kind of inflammatory thing going on and the ibuprofen seems to take care of it. I think I am at about 5 or 6 days with the LDN. I am going to start a log of any progress.

 

[Gazelle]

I take 3 mgs. I had worked up to 4.5 but reduced it after a while cause I was groggy in the a.m. It helps both with falling asleep and staying asleep--it actually helps me hugely. I have been taking it for nearly 4 years.

Sushi

Sushi, I haven't posted here for awhile. I stopped LDN awhile ago without any noticeable repercussions either way. I was taking 4 mg along w/other sleep meds. I'm just curious - have you changed your sleep regimen? Do you take other sleep meds, because I recall you saying LDN gave you the ability to wean some?

I always woke up about 4-5 hours after vivid dreaming on LDN and always wondered if taking it upon awakening instead or split-dosing during the night, both before bedtime and in the wee hours of the morning, might have worked better. Thanks for the input.

Gazelle

 

[Sushi]

@Gazelle
Yes, LDN did allow me to lower sleep meds (I still take a low dose), but I have taken LDN for years so nothing has changed recently--except that I ran out of LDN for a week and couldn't get to sleep without a lot more meds .

For me, LDN allows me to sleep through the night, but we all respond differently.

Sushi

 

[EtherSpin]

HMM. anyone found the LDN changes reducing a bit over time ? Im less sleepy in the morning as time goes on and my temperature intolerance/texture of clothing intolerance has returned a little (after at least a month of being 100% better) - Im still on the 4.5mg

 

[Anne_]

Hello,
I know that most of you didn't experience any side effects but it definitely happened to me.
I started taking LDN recommended by my acupuncturist to boost my immune system and get healthier quickly. Before that I have been on Special Carbohydrate Diet and I don't eat any grain, gluten, dairy, soy related foods because I feel bad because of them. After 1,5 year I was quite successful with my diet and I felt much better, I had great mood, a lot of energy, I slept well. My motivation magically was back and I was pretty active again.

I took LDN at dose 4,5mg for couple of days at night time. On the first day after I felt much better, had more energy to do things and I was in better mood. But on the second day and next one I felt much much worse than before taking it. I was extremely fatigued, I couldn't sleep and what is the worst my emotions became very strong and intense, I became angry with everyone and everything and the word angry is a very subtle word to describe it. I was furious to such a degree that I couldn't work and my work requires a lot of patience and a peaceful mind. I read several forums about LDN and possible reactions and found that it can be: the first stage after which it goes better which I doubt is the case due to the strong reaction, or it can be a severe side effect where it is suggested to take lower dose instead. So I decided to stop LDN and see what will happen. After like 5 days everything came back to norm. I felt good, slept well, my happiness and motivation where back. But I still wanted to try LDN with lower dose and I took 1mg for maybe three days. Again bad side effects came back. That was just too much for me. I can stand the initial stage where I feel worse but this was way too much! Obviously my body didn't respond well to naltrexone. I found somewhere a post that in some people naltrexone isn't discarded by body as it should and instead of having more endorphines you have less. This is exactly how I feel.

The big problem is that after stopping taking LDN these side effects didn't go! And it lasts couple of months now... I sleep pretty bad and wake up tired, my motivation and inner sense of happiness are totally gone. I figured it should go away after couple of days like it happened before but it didn't! I don't know what to do now. My acupuncturist doctor said it is impossible that LDN did it and didn't give me any advice with the problem that it caused. He was completely indifferent and left me with nothing. There is one more thing which may be important. I noticed that after drinking alcohol I feel much better on the next day. Better sleep, mood, energy, just like I felt before before. Alcohol suppose to support endorphine release. So I think maybe something is wrong with my endorphines because of LDN, maybe something is blocked in my body. I am not a doctor, just an observer so I can't know for sure what happened here. For now this is the only conclusion I got but it unfortunately doesn't solve the problem. I can't take myself back to the serene state I was before taking LDN. I monitor my diet very carefully and I didn't start any new food or medicine at that time, so it definitely goes to LDN. I do not know any doctor around that could help me with that.

I know that this is probably one case in a million, but it happened and I will deeply appreciate any advice.

 

[maddietod]

I had to stop LDN again. The first time I got very emotional when I jumped from .5 to 1mg. This time I titrated up from .25 in increments of .1-ish.

After a few days at .8mg I realized that the (unusual) daily headaches I'd suffered for about 2 weeks were getting worse. I'd also had strange flashes of light in my brain, in various locations. I thought this was related to the vertigo I've had since March.

I stopped the LDN and the headaches and the flashes were gone the next day.

It's possible that the reaction is to something in the tablets, as I crush 25mg at a time and add it to water. But I've never been sensitive to fillers in the past.

 

[SDSue]

@madietodd I've just started LDN and will be following your journey. Please keep posting your successes (and setbacks ) May I ask what pharmacy you use? I got mine at my usual pharmacy but am thinking of switching to Skip's in South Florida as they are highly recommended. I read on the LDN website that fillers can make a difference with LDN. Thanks!

 

[bertiedog]

My experience with 1 mg LDN has been brilliant except for the past 5 days when I have picked up a stomach bug which might be a form of food poisoning.

It took 4 weeks for the benefit of LDN to kick in, I started to have great energy and stamina plus I had a real good mood. As the weeks went on (its 8 weeks tomorrow since I started) my almost daily migraines ceased and I haven't had one for over 2 weeks which is a record for me. I just had a few headaches that would respond to Naproxen and a Paracetemol. This a minor miracle for me because I have been plagued by very severe migraines for years and years so this is HUGE for me.

I only had 5 bad days out of one month this past month and I am 3 weeks into a herbal protocol for Lyme and Ehrlichia so that has probably helped too but it has to be the LDN that helped my stamina/mood cos that started only 3 days after starting the herbs and they couldn't have worked that quickly.

I have done a lot of other stuff like getting rid of mercury toxicity, working on methylation, eat a good lower carb diet, have adrenal and thyroid support so wonder if that is why I have had such great benefit (until this bug). I still haven't had the migraines with this bug which is unheard of for me.

I always took the LDN between 8 am and 9 am because I didn't want any interruption of my precious sleep and it has worked great and I would recommend it to everyone. Have had to stop it today because my LDN is in liquid form which has got sorbitol in it which is the last thing I need with my bowels as they are at the moment!

Pam

 

[maddietod]

@madietodd I've just started LDN and will be following your journey. Please keep posting your successes (and setbacks ) May I ask what pharmacy you use? I got mine at my usual pharmacy but am thinking of switching to Skip's in South Florida as they are highly recommended. I read on the LDN website that fillers can make a difference with LDN. Thanks!

Good luck! I seem to be strangely sensitive, and don't expect to try this again, unless Dr. Rey thinks a .5 or .6 dose is worthwhile.

My local doctor prescribed 50m tablets. The manufacturer is Accord Health CA.

 

[maddietod]

Dr. Rey wants me to try one more time, starting at 0.1mg and increasing by 0.1 every 2 weeks. I offered to switch to compounded LDN, but she doesn't seem to think that will make any difference.

I think the idea is to see if there is any dose that I tolerate, and if yes, to see if that dose helps my wacky cytokines.