Low dose Naltrexone

[Beth Berner]

Trace,

If you haven't yet found a solution for your pain problem, don't be afraid of ketamine. My brother, a psychiatrist, uses it successfully for a lot of his pain patients. I am taking it for sleep issues.
Take care!
Beth

 

[penny]

Have just started LDN at .5mg a night, it's too early to tell but so far so good.

I was also just looking over my 23andme dna profile. It hasn't been wildly helpful to me but one thing did catch my attention, I have an allele associated with good "naltrexone treatment response". The studies mentioned are for regular dose naltrexone for treatment of alcoholism or heroin addiction, so it may be a completely different animal, but I wonder if this could be one factor in why LDN helps some people and not others. I don't understand the biology behind any of it though, so it's just a musing.

Here's a link to the gene in snpedia:
http://www.snpedia.com/index.php/Rs1799971

 

[penny]

Have been on LDN close to a month working up to 2.5mg so far, and wanted to report in on what I've experienced:

• Reduction in pain, like my pain receptors have been turned down a notch.
• Improvement in digestion, have had my first solid BM's in 2.5 years.
• Reduced PEM, I'm not crashing when I 'should' be.
• Improvement in OI. Noticeable in day to day functioning. Also did poor man's tilt table test. The week before starting LDN my heart rate went from 68bpm resting, to 108bpm on standing, topping around 130bpm at 5m standing coupled with sweating and difficulty breathing, I had to stop at 10minutes. I repeated this yesterday, my heart rate started at 68bpm again, jumped to 95bpm on standing, stayed at around 106bpm for the first 10minutes, crept up to 116bpm at 12-15minutes. It didn't feel great but was manageable, and I wasn't sweating or breathing heavily during the second test.
• Sleep is erratic, which is pretty normal for me. I have had some nights where I sleep much better than usual.
• Mild nausea, reduced appetite. This seems to coincide with dosage increases.
• No change in energy, stamina or brainfog.

This is more improvement than I've had since becoming ill (2.5yrs ago). Still a long way to go to 'normal' but every little bit helps!

 

[SaraM]

I recently made transdermal LDN with just adding the oral form to a little moisturizing cream and rubbing it on my skin with good result.

 

[sensing progress]

Glad to hear about your improvements on LDN penny. Have you experienced any insomnia from the LDN? I get terrible insomnia from it and have to take it in the morning.

 

[alex3619]

I just got a script for LDN so I hope to be on it soon. I was warned, and had to sign a form saying I was aware of, side effects including headache and nausea. I was also told these are typically temporary. I still have not read this whole thread, but its now close to the top of my to-do list. Bye, Alex

PS I was also warned to be aware it sometimes causes intensely vivid dreams, and to take it at bed-time only, which seems to be a problem for some patients.

 

[penny]

I have difficulty sleeping anyway, so while I think the LDN caused a bit of sleep disturbance I have generally still been within my "normal range" of bad nights. Some nights I'd get the feeling of being awake even when I'm asleep (lucid dreaming perhaps?), if that makes sense. That happened at the beginning more and some of the time when I changed my dosage. I wake up quite a bit (normally), but generally since starting the LDN I don't feel panicked and/or in pain when I wake up, which makes repeated awakenings less miserable. And of course there are the vivid dreams and nightmares, but I've had both of these most of my life, so again, kinda normal.

I do take a number of things to help me sleep - 2mg melatonin, magnesium glycinate or malate (can't remember dose), aleve, 10mg nortriptyline, ambien (between 2.5 and 10mg, usually 5mg) and sometimes baclofen (5-10mg) for muscle cramping.

I've actually reduced some of my sleep/pain meds since starting the LDN. I was taking 10mg of baclofen nightly, now I occasionally take 5mg; and I was taking 20mg of nortriptyline, now 10mg. Don't know for sure it was the LDN, but seems possible. And I can't be 100% sure what the cause is, but I've slept well the last three nights, that may be a record for me

How are you doing on the morning doses?

 

[jstefl]

I have experienced the headaches from LDN, so I went to a tiny dose. After a bad start, I reduced my dose to .2 ml three days a week. Now, after about 4 months, I am up to 1.2 ml every day. By starting very slowly I have managed to avoid the headaches that I had initially.

I take it in the morning. Maybe after I am up to a full dose for a while, I could switch to evenings, but for now, mornings seem to work better.

I also am able to reduce the number of painkillers that I take. I have many days now when I don't take any.

I find that I am much more able to concentrate, and that the PEM is much less if I overdo things.

John

 

[penny]

Has any one noticed "sleepiness" as a side effect of LDN?

I'm used to the wired/tired exhaustion. Since becoming ill it's been difficult/impossible for me to take naps. In the last week I've had several days where I'm just really, really sleepy (in addition to my normal fatigue) and am actually able to nap, which may also be why I've had some good sleeping nights. I'm hoping this is a good sign, perhaps a sign of healing?

 

[Sushi]

Has any one noticed "sleepiness" as a side effect of LDN?

Hi Penny,

LDN has definitely helped me with sleep. I used to sleep for 8 hours, wake up still tired but couldn't sleep any more. Now I can sleep as many hours as I need to in order to deal with the exertions of the day.

Still can't take naps though.

Sushi

 

[Gazelle]

Sleep

That's great Sushi! I definitely have a solid block of sleep on LDN, but I always wake up early and cannot, for the life of me, fall back to sleep. It doesn't matter what time I go to bed; I always wake up around 5:15-5:30. I get 6-7 hours, max. I am steady at 3 mg, along with a litany of other sleep aids, but every time I dose up, it causes cold sores and immune activation. That's why I'm concerned about it's possible combination with GcMAF, because, while many consider it a broad-spectrum immunomodulator, I've experienced it's immune-stimulating effects. I'm weary of going any higher and my doctor told me to stay at 3 mg, but maybe 4.5 mg is the proper dose to get that extra boost.

 

[Sushi]

That's great Sushi! I definitely have a solid block of sleep on LDN, but I always wake up early and cannot, for the life of me, fall back to sleep. It doesn't matter what time I go to bed; I always wake up around 5:15-5:30. I get 6-7 hours, max. I am steady at 3 mg, along with a litany of other sleep aids, but every time I dose up, it causes cold sores and immune activation. That's why I'm concerned about it's possible combination with GcMAF, because, while many consider it a broad-spectrum immunomodulator, I've experienced it's immune-stimulating effects. I'm weary of going any higher and my doctor told me to stay at 3 mg, but maybe 4.5 mg is the proper dose to get that extra boost.

Re: dosing, different docs have different opinions. Did your doc say why he wants you to stay at 3mg? Some think that your weight makes a difference, others don't (i.e. if you weigh more you may need a higher dose).

I noticed a big change for the better when I reached 3.5 mg. (I am tall and thin--weigh about 125 lbs)

I also got immune activation every time I raised the dose. I also am taking GcMAF, and while no one knows for sure how that combo works, my doctor told me to continue with LDN if it was helping me. It does seem to prevent the inflammation that some are getting on GcMAF.

Sushi

 

[Gazelle]

LDN and weight

Re: dosing, different docs have different opinions. Did your doc say why he wants you to stay at 3mg? Some think that your weight makes a difference, others don't (i.e. if you weigh more you may need a higher dose).

I noticed a big change for the better when I reached 3.5 mg. (I am tall and thin--weigh about 125 lbs)

I also got immune activation every time I raised the dose. I also am taking GcMAF, and while no one knows for sure how that combo works, my doctor told me to continue with LDN if it was helping me. It does seem to prevent the inflammation that some are getting on GcMAF.

Sushi

That's a good point about weight, though I am tall and thin too - an almost 6'3", 150 lb male; hence the surname. He just told me to go on 1mg for a few weeks then move up to 2 until stable and then 3. Each time I had an immune flare. While a disrupted sleep architecture was the main reason for going on this drug, I have to admit, the research on HIV and cancer with LDN, the immunomodulating aspects, and the fact that it can increase weight gain (as your friend can attest to) were all attractive reasons to go on it. While I'm not sure 3mg is enough, I wonder why 4.5mg was chosen as the set point. Why not 3 or 6?

Anyhow, I think I remember you saying LDN helped you wean your other sleep meds. Did you do that immediately after reaching 4.5mg or had you started before and did you titrate down slowly in any event without any noticeable side effects? Thanks in advance.

 

[Gazelle]

One more thing... I've read that network spinal analysis can evoke the same endorphin release effect, though not if you want it in the wee hours of the morning.

 

[Sushi]

That's a good point about weight, though I am tall and thin too - an almost 6'3", 150 lb male; hence the surname. He just told me to go on 1mg for a few weeks then move up to 2 until stable and then 3. Each time I had an immune flare. While a disrupted sleep architecture was the main reason for going on this drug, I have to admit, the research on HIV and cancer with LDN, the immunomodulating aspects, and the fact that it can increase weight gain (as your friend can attest to) were all attractive reasons to go on it. While I'm not sure 3mg is enough, I wonder why 4.5mg was chosen as the set point. Why not 3 or 6?

Anyhow, I think I remember you saying LDN helped you wean your other sleep meds. Did you do that immediately after reaching 4.5mg or had you started before and did you titrate down slowly in any event without any noticeable side effects? Thanks in advance.

Hi Gazelle,

I think the original researchers with LD Naltrexone were able to measure how long different doses blocked the opiate receptors (I think this is what I remember). Going over 4.5mg seemed to block them too long (they tried to block them for about 6 hours). If they are blocked while you are awake, you can feel "blue" or down.

It isn't an exact science though, as different people metabolize drugs at different rates. So, for some, they found that even at a very low dose the receptors were being blocked too long, so they suggested taking LDN every other day. On the other hand, one of the researchers found that someone carrying a lot of weight (say 250 lbs) needed a slightly higher dose to block the receptors long enough.

Unless you or your doctor has reasons not too, seems like you could experiment with a higher dose (in tiny increments) to see if you notice changes for better or worse. At 3.5 mg and above, I stopped having sleep disturbances and began to sleep better. But it is probably individual.

I reduced sleep aids slowly once I realized I was sleeping better. I still use something to get to sleep, but once I am asleep now, I will sleep as long as I need to. Before, when I got up to use the bathroom, I would have a hard time going back to sleep and could never sleep as many hours as I needed to.

Hope this helps and good luck!
Sushi

 

[penny]

Hmmm, I am definitely sleeping better at night. But I also have days where I never 'wake up', groggy all day, take multiple naps, unable to do much other than lie still. Only been happening in the last week. Maybe the LDN, but since no one else is getting this, maybe something else. I guess I'll just try and wait it out.

 

[penny]

Just a brief update. Some one responded to my question on the Any_Other_Dose_LDN yahoo group that they felt very sleepy and groggy with LDN but that this subsided when they lowered their dose.

So I reduced my dose and the last three days have been much better. More alert, more energy and less brain fog. I'm not sure that these are better than pre-LDN, but they are at least back to my "normal". Very short term results but it seems like it could be that too much LDN can cause excessive day time sleepiness and grogginess.

 

[Gazelle]

Later Administration

Does anyone take this stuff later, like when they wake up in the middle of the night, and, if so, is there a net or extended benefit? Thanks.

 

[penny]

I've wondered about that too Gazelle. The recommendations are to take between 10 and 2 (or something like that), but I feel like I need to go to bed before 10 to get enough sleep. I've thought about setting an alarm but it does make me a bit nervous - tempting the sleep gods and all.

 

[soxfan]

I am only on 1mg of LDN and I am already getting the sleepy and drowsy tiredness the following day. I didn't have this on even the 0.9mg but now I am having it. I am wondering if this will go away with time...It has taken me along time to get to this point and I don't want to give up now.
I am also taking it around noon but it seems to still make me so tired the following day. I am very sensitive to meds but this seems really strange...