I’m halfway through my 4th week on Low-Dose Naltrexone (LDN). It’s far too early to say with any authority whether or not it’s doing any good. And even if it *were*, ‘doing any good’ would mean an absence of symptoms, so measuring its efficacy will be difficult. Having said that, 4 weeks IS long enough to have some things to say about how taking it is affecting my sleep patterns.
Because LDN blocks the serotonin receptors, and because it’s taken at night when one’s serotonin production is highest, it has vastly changed my experience of sleep.
A typical LDN regimen will start with extremely low dosages, in my case, 1.5 mg. Under my ND’s advice, I was then to bump up another 1.5 mg each week until reaching a max dosage of 4.5 mg.
I had read, and also been warned by my ND, that when starting the regimen or increasing one’s LDN dosage, sleeplessness could occur and that it typically lasts 2-3 days, sometimes up to a week. This definitely happened. The first week, I got very little sleep and woke up frequently during the night. By the end of the first week though, I was starting to stabilize.
I upped my dosage to the recommended 3 mg and spent the next week tossing and turning again. When the second week ended, my sleep was still incredibly crappy, and on top of that, I was getting sick. I took this as an opportunity to stay with 3 mg for another week, and I’m glad I did. By the end of the second week, I was able to fall asleep and stay asleep until morning.
I’ve been at 4.5 mg since last Saturday, and just last night was able to get a reasonable night’s sleep again.
What’s most interesting about this though, is not the changes in my ability to fall asleep, but the actual experience of falling asleep. As a general rule, I am not someone who has difficulty sleeping. Historically, once I was horizontal, I could feel my body gradually shutting down and consciousness beginning to ebb away. Gradually, peacefully, and predictably, I’d wander off to the land of Nod. If Diana wanted to have a conversation, I’d have to sit up and talk, because if I was laying down, I’d fall asleep mid-sentence. Awkward!
Sleep is not like this anymore.
No longer do I feel the approaching of sleep as it slowly washes over me. Now, things take a little longer. I lay there for a while, consciously focusing on relaxing each part of my body, breathing mindfully, coaxing my heart to slow to its resting rate. I fight against my mind, as it tries to become convinced that I’m not going to fall asleep at all. All the while, my body is feeling ready-to-go, even restless. When it comes, sleep is no longer like the setting of the sun. It’s now more like the lights being switched off. It comes on sudden and strong. The alarm is going off before I’m aware that I’m falling asleep. Weird.
And my dreams!! Oh, wow. I’ve never thought of myself as much of a dreamer. Not only do I generally not remember the contents of my dreams, but I don’t typically remember having had them. Doctors say that we have them even when we don’t remember them, but you couldn’t prove it by me! Things are different now. I’m having deep, immersive dreams that cover grand story lines and convoluted realities. I even wake up remembering bits and pieces. But even when I don’t remember the details, I remember that they were sweeping epics of altered reality and surrealism. They are…. experiential, to say the least.
Interestingly, I believe that I’m feeling more well-rested than I am used to. I am the prototypical morning grouch, and historically, it’s taken me an hour or two of being vertical before I really start to feel like I’m awake. Like everything else about sleep, this is different now. This isn’t to say that I’m springing out of bed with all the zeal of a ‘real’ morning person, but I am waking up alert and functional without that old familiar sense of having to claw my way upwards to consciousness.
If you’re considering LDN therapy, be ready… if your experience is anything like mine, sleeping will be different! Mind you, I’m not discouraging you, nor am I meaning to imply that the experience is negative, but it is definitely an adjustment, and it’s definitely taking some getting used to.
Are you already using LDN therapy? What have your experiences with sleep been like? Has it changed any old, familiar patterns for you? Did those patterns ever return while you were on LDN?
My 16 yr. old son has been on 4.5 mg of LDN for 6 weeks. He didn’t have any change in his sleep at all. So far, his ulcerative colitis is unchanged – maybe in somewhat of a flare right now. I’m not sure why. *sigh* We’ve been on SCD for 8 months. We did the intro for about 2 days and then jumped in because he was on prednisone at the time and super hungry. I keep wondering if we should go back to the intro. diet and start over, but holidays are here. Just keep thinking in time he will get better. The first 30 days his LDN was compounded with acidophilus, but we changed pharmacies due to insurance coverage and now it is compounded with cellulose. Please keep us posted if you see the LDN working for good for you!!
Thanks for the input, Terri. I’m sorry to hear that you’re seeing mixed results. I hope your son’s UC improves soon.
Just on 2nd week of LDN, raised dose from 1.5mg to 3.0mg last night. UC diagnosis 2yrs ago, med free on SCD ever since. Decided to try LDN as back-up to SCD. 1st night @1.5mg woke up after 2 hours, eyes wide open – WOW…could fill LDN kick in. Was able to go back to sleep. Sleeping OK since but needing more sleep, recalling dreams, and feeling in kind of a funk. Blue, not my cheery, energetic self. Almost feel as if getting ill…moving forward, with hopeful watching.
Interesting, Julie. I am just getting over a major cold, and I’m convinced that terrible sleep played a role in getting sick. I’m very curious about what the next few weeks will bring. I’d love to hear more about your experience as you move through it. Good luck getting back to your cheery self!
Julie, how long on SCD until you were symptom-free? I’m curious why you are trying LDN if you are symptom-free on SCD? My son’s allergies seem worse since he’s been taking the low-dose naltrexone, but I also took him off all allergy meds trying to take away anything that could be making the UC worse – we did that a few months before starting the LDN. He has always slept like a rock, and the LDN hasn’t affected his sleep at all. I’m thankful for that. Best wishes to both of you.
Terri – in response to How long until symptom-free on SCD and Why LDN if symptom-free on SCD? Was fresh out of one-month in hospital when starting SCD; symptom-free in about 3 months. Trying LDN as son has Crohn’s and has also been symptom-free for 3 years…He’s headed out-of-state to college and hopefully will do study abroad. Sampling LDN to see if it’s a possible back-up for when he travels abroad as SCD alone would be difficult to adapt to each culture as he travels.
Julie, That’s wonderful that you did so well with SCD. We haven’t had that kind of success with it. I really hope the LDN will be exactly what your son needs to keep him healthy while going to school. Best wishes for both of you!
FWIW Terri, my Crohn’s is in full remission right now also, but I’m still taking it. The reason for this is that Crohn’s isn’t my only autoimmune issue. I also have psoriasis, and while I haven’t seen a full-blown flare in a while, I do have chronic low-grade symptoms. Between the sniper-type onset of my Crohn’s earlier this year and the resistance of my psoriasis to fully subside, my ND and I thought LDN seemed a reasonable next course of action to try.
Also, if you believe the hype, another good reason to take LDN even when IBD is in remission is that it is correlated with a decreased risk of colon cancer, which is always a concern for IBD folks.
Will keep you posted Damion…FYI, went to bed early the other night, 9 1/2 hours – 10 hrs. rest vs usual 6-7hrs – FELT SO MUCH BETTER THE NEXT DAY! Will I ever learn? S L E E P does a body good.
Thanks for sharing this Damion. No doubt it will be helpful to anyone considering using LDN.
-Paul
Thanks, Paul. I hope so! When approaching something new, I always try to learn from other people’s experiences, so I’m glad to be in a position to offer that to others.
Damion, I hope the LDN will work out for you. My son is having no side effects from it, so we have nothing to lose. I can’t say yet that it’s made a difference in anything, but these things take time to turn around. Thanks for your blog. It’s a great help for all of us.
OMGosh, I am sooooo overwhelmed!!!!! I’m not even sure how I got to this blog at this point, but I am just going to trust the process…I have had crohns for over 20 years…many years playing the marter and not on any meds, then a resection almost 9 years ago, several allergic reactions to immune suppresants, and then my son was diagnosed with crohns at the age of 9…so I woke up and did what the doctors wanted, I have been on cimzia for almost 2 years and about 4-6 months ago started feeling crappy, buttocks rash and lots of D! anyway…just had a cononoscopy and have lots of active disease, spratic bleeding and scar tissue and narrowing. Have been gluten and dairy free on and off for years, but off since my son (he is too)
Heard about lnd and want to have my ducks in a row when i see the doc. he wants me to start some crazy drug called tysabri that comes with black box warnings…my intuition says NO, and keeps taking me to ldn. looking for any advice out there.
Hi Venus! I don’t know how your fond my blog either, but I’m glad you did. Thanks for your comment. It sounds like you’ve got a lot to think about right now. I had a few thoughts while reading your comment. One thing you’ll want to keep in mind is that if you’re seeing a traditional, Western MD, you’re going to have a difficult time getting them to buy into the idea of LDN as a therapy for IBD. you’ll probably need to find an MD that specializes in natural and holistic therapies, or a naturopathic doctor (ND). This use of naltrexone is not sanctioned by the FDA, so a lot of MDs poo-poo it. Another thing to keep in mind is that it’s no magic bullet… There are no magic bullets. I know that, for me, it’s been an effective tool for helping to keep my disease in remission, along with diet and lifestyle. I don’t know how effective it is in treating active disease. That would be something you’d want to talk to a health care provider about.
I haven’t done a lot of research yet on tsybari, but as I understand it, it’s very similar to remicade, falling under the biologic category. It’s pretty new and I haven’t heard from anybody that’s used it.
Have you looked into dietary changes? If you’ve read much of this blog, then you probably know that I’m a strong proponent of using the Specific Carbohydrate Diet to tame and control IBD. There’s a huge community of SCD’ers out there with lots of support, recipes and ideas.
Good luck, Venus. I wish you and your son all the best.
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Hey Damion – update on the LDN start-up. It’s been about 2 months and I’ve remained on the 3.0 dose…Sleeping good but definitely still needing more sleep to feel great. The “blues” kind of passed and I’m slowly feeling a bit more like my energetic, happy self. Was considering dropping to a 2.0 mg dose to see if less felt better, but may stick with 3.0 for awhile longer. Noticeable difference is…eating the legal SCD foods that bothered me before LDN or eating something off the diet results in somewhat less of a reaction than I experienced with just SCDiet before taking LDN. Am going to let my 17 yr old give it a go. Julie
Wow… it looks like I never responded to this, which is weird, because I seem to recall doing so! I must not have saved it.
At any rate…. thanks for the update! Like you, I found the first couple/few months of LDN to be a little bit of a roller coaster, but I’ve definitely stabilized at this point. I’m sleeping well (and falling asleep easily), and my dreams are a lot less crazy now! I’m feeling healthy, and waking up feeling well-rested, both of which are new and welcome experiences for me.
Did your son start LDN? How’s it working for him?
Damion – LDN almost 4 mos for me. Went back to 2.0 dose from 3mg and like it. I am experiencing perfect poops more consistently, i.e. even if I eat something SCD that I am usually sensitive to that causes mucus or change in BMs. Had one coffee/dairy drink off diet (dairy big no no for me) and did great with little notice. Still get gas/air if something SCD bugs me but perfect poops reign. Son 4 wks into LDN and no problems after initial vivid dream phase. Stay tuned! Thanks for the prompt to report update.
Thanks for the update, Julie! Glad to hear that things are going well for you and your son!!
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