Hi. I got some permissions to share some things.
On Oct 16, on her faceboo page, Rockon wrote:
"Sleeping for a longer time on 1mg LDN 2X a day. Gradually titrating up. (started at 1 mg for 2 days, as an initial trial, since I'm a med sensitive).
"Bladder inflammation still gets me up over and over at night, but I was exponentially sleeping longer when I moved from 1 mg naltrexone to 2 mg/day. Sometimes I can go back to sleep without even getting up to pee, when the urge seems to be what woke me! Also, since stopping amitriptyline, I have sometimes been unable to go back to sleep after that later pee. During this period, I would feel I still need one or two more sleep cycles, but my brain wouldn't go back down. With LDN my brain will sleep again. That has helped me to get the daily repair work done on my ankles again....they are my primary "sleep deficit indicator". Other pain is not all as improved as the ankles (yet?) by LDN.
I do have to credit this Pain Butter from my FB friend for helping with some of this other pain. I know it helps because I started it a month before trialing LDN. Keeping my experiments separate! But that salve did not help my ankles at all. btw, the pain butter she makes is great for when I get a flare that I call a CNS flare....that's when pain is everywhere, and maybe bordering on nervy. Very loud, all at once pain.That happened one day and it was prior to starting LDN.
"I Need a cheaper source for LDN. $92.00 for these capsules. That seems high? One month supply. Have seen people write about
diluting regular Naltrexone in water. That was back in the very earliest days of posting about
LDN. Anyone done this or saved money (and info) in other ways?
"I also recall seeing it put into troches (soft lozenges from compounding pharmacist). And you can cut the troches into equivalent pieces to titrate up on the dose. And our other 2 friends used it in topical creams. (One from Skips?, one from another compounding pharmacy) Before I try to force myself to research, I will mine your knowledge here.
"Also, this morning I recalled reading in a blog from Cort that there is superior LDN from some pharmacies, and saw discussions of trusted pharmacies on MS forum posts yrs ago. (Skip's Pharmacy comes to mind.) Should've jumped on this when it was all fresh in my mind. It's coming back to my leaky mind in dribbles. But it still dribbles, so that's good 😃"
One person said it's helping her brain fog, but pain has remained persistently high.
I joined just a couple of mast cell groups, Rockon is in more, but she is good about
sharing interesting things she reads. That patient group is definitely using LDN, which makes sense, if you know that LDN stabilizes glia cells and that glia and mast cells can activate each other (what Rockon has said is called "cross talk").
Sometimes there are threads in those groups where people ask what has been the experience of LDN. Rockon has written that she has seen that some people need to go slower than the dr suggests. She said some people counseling others said they found that skipping a day or even two days can get you through a rough patch while adjusting. I saw her say that some people take it at other-than-advised times of day: Like if vivid dreams are a problem, see how early in the day you have to move your late-day dosing. (and that may be a temporary adjustment?)
LDN doesn't mix with opiates. I think(?) they use the same receptors on glia cells, so the naltrexone blocks the receptors. That's why it reverses overdoses of opiates. If you use even tramadol, maybe you had better read and see if even that and LDN will not work together, because I am not the expert.
It's also used for complex regional pain syndrome/CRPS.https://www.healingwell.com/community/default.aspx?f=24&m=3938878
For info and the link from Younger's fibro/LDN study, look for this in the next link.
"LDN ° LDN ° LDN ° LDN ° LDN ° LDN ° LDN ° LDN ° LDN ° LDN ° LDN °LDN °LDN ° LDN"https://www.healingwell.com/community/default.aspx?f=24&m=2756942