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I now feel that I can safely say LDN is bringing me back to myself or the self I want to be. But, let me take a step back because it's not been a smooth journey and sure has had its major downturns.
Early on, I received the advice that I needed to "Go low and slow". (See Facebook LDN group) I didn't fully get it when it was first said. My doctor ordered the 4.5mg capsules, so I felt that getting to that level-the level that has been most researched for Fibromyalgia(FMS)-the soon was better. I've since learned that there is no optimum level that works for every person.
How LDN Works
LDN blocks the opioid receptors of the brain for a few hours. When this has happened, the brain feels that there haven't been enough endorphins created in the body, so it produces more. Research has shown that those living with FMS have lower levels of endorphins in our system. So, when the brain is "tricked" into releasing more endorphins by the LDN blocking off the receptors for 2-4 hours, it actually is creating natural pain relievers and mood booster. Also, the blocking of the receptors makes them more sensitive to the endorphins that have been created, making them more useable and plentiful.
LDN Science explains how it works, "Since LDN blocks the OGF receptors only for a few hours before it is naturally excreted, what results is a rebound effect; in which both the production and utilization of OGF is greatly increased. Once the LDN has been metabolized, the elevated endorphins produced as a result of the rebound effect can now interact with the more-sensitive and more-plentiful receptors and assist in regulating cell growth and immunity." The site goes on to explain that the Rebound Effect lasts for about a day. However, being every person's metabolism is different, it can take different dosages with 3mg to 5mg working for most patients.
When one has low endorphin production, they will experience:
- long-term pain throughout the body
- tender spots that hurt when they are touched
- muscle stiffness
- fatigue and low energy
- sleep problems
- depression
To combat this, doctors often push endorphin-building exercises such as yoga, swimming, and walking. I have felt this distinct change from a raise in my endorphins when I was in physical therapy. When I showed up lethargic, hurting, and down, my PT would get me on the treadmill for 20 minutes at a rate that got my heart pumping. Every single time, I found that I had way less pain, my mood was improved, and I had energy.
And so, this is the effect that I am finding with LDN. For a good 7 to 8 hours, at the current dose I'm at, I am experiencing a pain level of 2-3, I have the energy to go for walks, swim, do house projects, write, socialize, etc. I also have clearer thinking and feel upbeat and motivated.
My Experience
However, I have had the complete opposite during these 8 weeks. After writing my first post, I had a very difficult week. I was moving up from .5mg by .25mg every 5-7 days. I had started to take LDN in the morning, upon waking at 7:30am because I had gotten warnings at the medicine causing insomnia which is not something I wanted to experience.
About two weeks ago, at 1.5mg or so, I had five days in a row where I was depressed (ready to give up using LDN), tired, and my pain levels (6-7) were higher than before LDN. I was so discouraged. I had read of the Rebound Effect that LDN created, but I really had no idea what it meant. Fortunately, on the 5th day, I saw someone discuss this on the LDN Facebook group. Her explanation about the blocking of endorphins made so much sense and now what others had said to me about taking it before bed became clear. I was experiencing the blocked-receptor symptoms during my wake hours, thus causing elevated pain, depression, and exhaustion!
I went off from LDN for 36 hours, starting again with 1.5 at 9:00pm. Ever since that switch, I've been doing pretty well, and I'm actually sleeping okay without taking anything else. I'm waking up a couple of times, but I have been able to go back to sleep fairly readily. I've been able to have my granddaughter over and play for much of the day. Today, in a race with her from our community garden to home, I actually ran three or so blocks without feeling like a rusted Tin Man struggling to move.
Moving Forward
I'm continuing to titrate up at this point. As they say, I need to find my "sweet spot". I'm not fully sure what that will look like, so it may take some back and forth in dosages for a while. Higher isn't necessarily better. Due to metabolism, I need to find the dose that blocks while I'm sleeping and gives me the full rebound effect while I'm awake. I don't believe I'm there yet. If I take too high of a dose for my body, then I'll be in blocked mode for too long of a time, which will bring on the opposite effect for what I need.
LDN Resources:
- A Letter to Your Doctor Explaining Your Interest in LDN
- ldnscience.org
- The LDN Book (Interview with Donna Gregory)
- LDN Research Trust
- Dr. Ginevra Liptan's Answers to Some FAQs on Low-Dose Naltrexone
- An LDN Patient's Interview-Carrie, Shingles and CRPS
- Conditions That Are Helped by LDN (There are many!)
I will continue to update you as to my progress. I'm not "there" yet for sure and am not sure how long that will take. Some have reported reaching their personal full results at 6 months or even a year. They say to hang in for at least 8 weeks, which I have done and certainly am having wonderful results at this point. If you have questions or stories about LDN, I welcome them. I am not a doctor, obviously,
Thank you for visiting my blog today.
I am committing to posting once a week on Fridays.
However, as you know, my new normal means that sometimes
I have to listen to my body and am not able to follow through
as planned.
Thank you for your understanding.
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Thank you for sharing these updates with us Katie because many of us wish try certain meds and wonder how others have experienced.
ReplyDeleteI'm glad the nighttime dosing is helping you! I wasn't able to take it during the day either. Like you, I felt worse.
ReplyDeleteYes, it's made a huge difference. I've dropped back to 2mg because I was having a low-grade headahce and difficulty waking up in the morning. Seems to be better for me at this point. Still "playing around" with the dosage to find my sweet spot. But now that I understand about the endorphin block receptors, I understand that it's not just dosage but timing. So, I need to figure the best time as well. I think it may be 7pm going to bed at 10pm.
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