Low dose Naltrexone

[penny]

I've never been particularly sensitive to medications and I feel noticeably different at 1.5 and 1.8mg. I wouldn't have thought such a small amount would make such a big difference, but it does, so I'd totally believe that .1mg makes a difference for you. I tried upping my dose again several times this past week and each time I felt much worse the next day. So maybe it will go away, but personally it's not worth it for me to wait it out.

Interesting about the different timings. Maybe once I've been at 1.5 for a week or so I'll experiment with a middle of the night dosage, see if it works better that way. So hard to control all the different variables!

 

[soxfan]

I am going to stop for a day or two and maybe I can find out if this is what is causing the sleepiness. I just started Valcyte also so it could be that....

 

[Gazelle]

Nighttime dosing

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.

We've been having thunderstorms at night, waking me up around midnight to 3:00 am, so I've been trying the dosing then to extend sleep, and it didn't help. In fact, it made me feel worse. And while I think going to a higher dosing regimen makes sense for some people but not others, my doctor thinks LDN is like "cheating the system." He did not say to go off it but to reduce the dosing.

Curiously, I read a "tip" about a long time CFS/ME sufferer being forced to sleep on her back at a guest's house because of a very thick pillow, and it really helped her. Normally I can't fall asleep on my back, but I have sometimes awoken on my back and always feel like I've slept "well" when that happens. So I tried this a few nights ago and was able to fall asleep, waking up only once at midnight, when I popped an extra klonopin. It was the best night of sleep I've had in a good long while and I had great energy yesterday. Unfortunately I overdid it and was unable to replicate it last night. But it's worth trying for those with sleep problems - something about the hindbrain compression. Plus, sleep in the fetal position isn't the best thing for the hips or spine anyway.

 

[penny]

We've been having thunderstorms at night, waking me up around midnight to 3:00 am, so I've been trying the dosing then to extend sleep, and it didn't help. In fact, it made me feel worse. And while I think going to a higher dosing regimen makes sense for some people but not others, my doctor thinks LDN is like "cheating the system." He did not say to go off it but to reduce the dosing.

Interesting, what do you think your doctor means by "cheating the system"?

 

[BusyMamato5]

I was hoping to get prescribed some of this, however my GP outrightly refused.

 

[Gazelle]

Interesting, what do you think your doctor means by "cheating the system"?

Sorry for the delayed response Penny, but I couldn't log in. To be fair, I'm not exactly sure what he meant, but he originally thought that cytokine swarms in the brain could be causing my sleep disturbance and that LDN could help block them. But, I think he's more interested in getting to the root cause of the problem rather than tinkering with opiate receptors. The research on LDN is sparse and anecdotal, and nobody knows exactly what it does or if it blocks other forms of immunomodulating therapy. I think he thinks a lot of the problem emanates from the gut and the lack of being able to methylate serotonin.

But you have to sleep to be anabolic and repair. As I said, he didn't say to go off it completely. I have cut my dose but will stabilize. I did the pillow thing again last night with a thicker pillow, and it worked, though I did wake up earlier than I would've preferred. Sleep is tricky business for CFIDS/ME. If you have no other choice, you have no other choice. I'm going to try some other stuff for awhile but will ramp back up if I have to.

 

[penny]

That's great that you have a doctor so interested in finding the root cause! I was under the impression though that LDN could help heal some gut problems - isn't Chron's disease one of the few things they've gotten substantial studies for? But that's a pretty simplistic interpretation, not all gut problems are the same!

Yes, you have to sleep to heal, and it is tricky.

I have a rather awful/wonderful pillow, it's a buckwheat/millet pillow that feels rock hard and generally quite unappealing, but I do think I sleep better with it. I assumed it was because once I got settled it would remain stable (rather than flattening out as down pillows do), so I wouldn't wake up with neck pain needing to shift my pillow around. But maybe it's because I am more able/likely to sleep on my back - I still toss about a lot but it's more difficult to sleep on my side or stomach since it doesn't flatten as much (your thick pillow trick?).

I also tried taking my LDN in the middle of the night the last two nights (so much for waiting till I was stable!), no alarm, just normal midnight awakenings. And I've not had good days. Not enough data to draw a conclusion but I think I'll go back to bed time dosing tonight.

 

[penny]

I was hoping to get prescribed some of this, however my GP outrightly refused.

Hi Busy,
My doctor was not initially receptive, but agreed to a trial on my second request 4-6months after the first. I also brought in the Stanford Fibromyalgia study.

Some folks also get their meds from online pharmacies, some of which don't require prescriptions I believe. I think there's information about this in the thread and there's definitely info on the LDN yahoo group.
Good luck!

 

[BusyMamato5]

Hi Busy,
My doctor was not initially receptive, but agreed to a trial on my second request 4-6months after the first. I also brought in the Stanford Fibromyalgia study.

Some folks also get their meds from online pharmacies, some of which don't require prescriptions I believe. I think there's information about this in the thread and there's definitely info on the LDN yahoo group.
Good luck!

Thanks.. Are you in the uk?
I'm put off by buying meds online, but may resort to if I have to x

 

[sleepy237]

Busy Mamato find a doctor who is receptive, it is possible. I am from UK and start LDN next month best wishes ~Sleepy

 

[penny]

Thanks.. Are you in the uk?
I'm put off by buying meds online, but may resort to if I have to x

No, sorry. The US. My impression is that it's more difficult to find a prescribing GP in the UK, but not impossible. On the yahoo group I've seen references to http://www.ldnresearchtrust.org/ for finding out how to get a prescription.

 

[atoska]

i dont know if its been posted before, but this is a great video about LDN. Its long but very interesting!

http://www.megavideo.com/?v=S6HPUJZO

im going to start LDN soon, hope i have some good response. ill let you all know!

 

[alice1]

I just started again today.I stopped over a year ago because I couldn't sleep even on the lowest doses.I took 1/4 of 1 mgs this a.m..I know that's incredibly low but did I ever have a good half day.I was reading that some people split their dose so maybe in a week or so I'll take another 1/4 in the mid-afternoon.
I'll let you know and good luck to those taking or starting to.

 

[alice1]

Also wanted to say that oncologists are interested using it for ovarian cancer and it is used for Crohns.

 

[leela]

Quick question for the LDNers here--

Since you get it from a compounding pharmacy, how do you order it so that you can ramp up the dose?
Is it in a form you can divide easily? My understanding was that the on-label dosage was really high, so the
pharmacy had to crush the pills and divide them. I'd love to be able to give my doctor precise info for Rxing it
in a way that I can start low and work up slowly to the 4.5dose.

Thanks everyone

 

[Sushi]

Quick question for the LDNers here--

Since you get it from a compounding pharmacy, how do you order it so that you can ramp up the dose?
Is it in a form you can divide easily? My understanding was that the on-label dosage was really high, so the
pharmacy had to crush the pills and divide them. I'd love to be able to give my doctor precise info for Rxing it
in a way that I can start low and work up slowly to the 4.5dose.

Thanks everyone

Hi Leela,

The "good" compounding pharmacies don't crush the 50 mg tablets and divide them. They use a pure naltrexone powder and fillers that are neutral for most of us. Who knows what the fillers are in the genertic tablets. Still, many do well with dissolving the generic tablets but they don't really dissolve, they sort of get suspended and you have to keep shaking the mixture to try to get the an even dose.

I used to get LDN compounded from a good pharmacy. I picked a dose that was easy to multiply but I still had to open the capsules and mix them with the right amount of distilled water. Then I discovered that you can get it in a liquid form that is very easy to measure with an insulin syringe (take the needle off).

I believe Skip's Pharmacy in Boca Raton will supply it as a liquid though I get mine from another source. I much prefer the liquid, especially when you are constantly adjusting the dose.

Best wishes,
Sushi

 

[leela]

Thanks so much, Sushi.
If you are not uncomfortable doing so, could you PM me with your pharmacy info?
Is the liquid pricier than the powder?

 

[alice1]

Sushi were you always able to sleep with your night dose?

 

[Sushi]

Sushi were you always able to sleep with your night dose?

I always had trouble for the first few days after I upped the dose, so I just took more sleep supps/meds for those days. After I got to about 3.5 mg I no longer had sleep problems from LDN and in fact find it helps sleep a lot.

Sushi

 

[alice1]

That's fantastic.I'd like to get there.