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Julie  Stachowiak, Ph.D.

Julie's Low Dose Naltrexone FAQs: Dose Timing

By July 20, 2009

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A couple of you have asked about the best time to take your low dose naltrexone (LDN) for multiple sclerosis (MS).

Until pretty recently, it was widely accepted that LDN should always be taken between 9:00 pm and 3:00 am, as that is the time that natural endorphins are released. The LDN is supposed to work with these endorphins, both keeping them circulating longer and perhaps even stimulating the body to produce and release more endorphins.

However, one of the most common side effects of naltrexone is sleep disturbances, both in the form of insomnia and lucid dreams. For many people, these side effects are temporary and disappear after a week or two after starting the drug. Some people counter these effects during this short time period by taking a sleep aid, like Benadryl or a prescription medication.

For some people, the insomnia continues to be a problem long after the initial two weeks of taking low dose naltrexone, contributing the very MS-related fatigue that these people were hoping the LDN would help relieve. In most cases, sleep aids should not be used long-term unless absolutely necessary – these can also make people with MS feel drowsy during the day.

As it turns out, some docs are saying that people can take LDN in the morning and it will be just as effective as taking it at night. In fact, these docs recommend that it only be taken in the morning when it is used to treat people with chronic fatigue syndrome or people with very poor sleep quality.

Some of you have written to me to say that LDN has actually helped your sleep. As for myself, I notice that the LDN knocks me out about an hour after I take it (kind of like being hit with a sledgehammer), but that I wake up about three hours later, full of energy. I have worked to train myself to go back to sleep, but this can take as long as a couple of hours.

What do you think? Are any of you taking your LDN in the mornings? Have you noticed a difference? How do you feel during the day? Has your sleep improved? Share your experiences here – we all need to learn from each other.

Comments
July 20, 2009 at 5:00 pm
(1) yourverity says:

I take it as close to midnight as possible (like Dr. Bihari suggested). I had a few vivid dreams but not too much of a problem sleeping. I do know Dr. Zagon does not think there is a difference as to what time you take LDN but then there are other Doctors that swear by the night dosing. I think that it may differ from person-to-person as to when the best results are had.

July 20, 2009 at 6:53 pm
(2) GerneyLee says:

I have been taking LDN for about two years I take it sometime before I go to bed – I have no effects whatsoever. I sleep like a log most of the time unless something has me excited – but that is rare, I take Yoga and work on staying calm. I take it for Stage III Breast Cancer. So far – so good…

September 24, 2011 at 9:01 am
(3) Bobbie says:

How do you find a dr. to prescribe it

July 21, 2009 at 12:40 am
(4) Joseph Wouk says:

Julie…

LDN never affected my sleep at all. In fact, I didn’t notice anything when I began taking it. It felt like… nothing. Kind like taking a vitamin pill.

Of course I had the advantage/disadvantage of not knowing anything about LDN and not expecting anything from it. I only figured out that all my PRMS symptoms were gone after three months, but I can’t honestly say when they disappeared as I wasn’t paying attention.

Psychology plays a big role in our reaction to drugs, including LDN.

Joe

July 21, 2009 at 11:03 am
(5) anne says:

This is my second attempt to take ldn for m.s.. The first time it gave me extreme insomnia at night and loss of appetite. The insomnia got worse with each day and I felt very hyper. I worked full time so I decided to wait until i had time off to try again. This time, I took it in a.m. with breakfast. I noticed I felt very speedy the first two days but then it wore off by night and didn’t effect my sleep. However, by the 6th pill taken in the a.m. with breakfast, my insomnia at night was all night. I’ve always struggled with insomnia but the ldn seems to excaberate it. I was thinking that if I took it in a.m. it would not effect my sleep at night. I’m on the lowest dose right now. I will take it in a.m. again and then take a sleeping pill at night to see if it helps with the first several weeks. I’m concerned that if I up the dose the insomnia will get worse.

May 22, 2011 at 10:06 am
(6) milesap says:

Try taking melatonin half hour before bedtime it helps and its over the counter

July 21, 2009 at 11:10 am
(7) Lyn says:

Though I appreciate this web site and the information imparted here, I have to say the matter on LDN is in conflict with information recently imparted to me.. I spoken with DR Skip Lenz, who is heavily quoted at the lowdosenaltrexone.org web site.

According to Dr Lenz who is a doctor of pharmacology, LDN works during the REM stage of sleep, that is; LDN works while you are dreaming. I have no doubt that there are some Doctors that feel LDN can be taken in the morning. I had a Dr who told me to take it mid evening to prevent the sleep disturbances. People are not engaged in REM sleep while awake. Therefore, according to someone who is heavily degreed in the study of the chemistry and affect of drugs, taking LDN any time where sleep is not possible is a waste of time and money.

I am one of those people whose sleep is affected by LDN. l I cannot fall asleep if I take it at bedtime, After I take it I toss and turn until 6 am; then I finally fall asleep. and I’m fairly sure it is out of my system by then. While it is safe to operated under the guidelines that Sleeping pills should not be utilized, long term. I’m afraid medical science gives those of us with the unwanted side affect from of sleeplessness, from LDN, no choice.

A Doctor may say anything he or she wants, the fact remains that a Dr requires one or two classes in pharmacology, and a pharmacist is better educated as to what drug will aid you. I’m afraid the LDN while awake will not increase endorphin, or keep it circulating or, anything else of the kind. Taking LDN any time other then at bedtime, according to Dr Lenz, will do absolutely nothing

I, for one, am disgusted with the manner in which MS is being handled by the ‘educated’ . It has been ignored and under funded for how long, because it was a woman’s disease and not worthy of any real consideration. It wasn’t even considered as being an actual ailment until two congressmen’s wives contracted it. And then we have big ‘Pharma’ becoming wealthy on the backs of the ill, by pedaling drugs that are only 10% effective. It is little realized that the way the FDA establishes efficacy is by adding the number of those who benefited by the placebo to those who actually benefited by the administered drug. The injectable medications ,pushed by the drug companies, do not have an efficacy of 33%. The fact of the matter is the drugs available are dismal in ability to curtail attacks, And the other choice is a drug that might have the unfortunate side effect of death.

While we are busy shooting ourselves with Drugs that are not effective or possibly deadly, Researchers in England have managed to eradicate all signs of MS in 17 of 20 MS patients with the use of stem cells taken from ‘belly fat’. ‘ Google’ this, its all over the web . Why isn’t that research being done here? Big Pharmacy ; again?

I , for one, have no choice but to take LDN with a sleeping pill. No Drug at all may be damaging, LDN with a sleeping pill may be damaging; but it is less damaging then MS with no rest and no ability to absorb LDN because it wasn’t administered properly

Be Well

November 2, 2011 at 3:22 pm
(8) Carol says:

I so appreciate your input here. I am a very good sleeper and not much really bothers me in that regard so I am hoping that LDN will not interfere. But timing is important and bedtime si better for me to remember to take my meds at a consistant time.

July 21, 2009 at 5:33 pm
(9) Carrie says:

I’m sorry for those who are having problems sleeping on LDN! I take it at 10 and always wake up at 2 or 3.. but then I never have a problem going back to sleep – so I guess I’m lucky! I’ve heard many times that taking LDN at night is best in particular for MS in order to stop progression. Early morning hours is when our brains produce the most endorphins, so having the LDN at full effect at those times creates the most endorphins possible. I’ve also read that it’s not necessary to be asleep as your brain will create these endorphins at this time regardless. If you need sleep-aid ideas, I would suggest taking a look at the yahoo group lowdosenaltrexone. There’s a lot of great information there and such a helpful group of people!

Carrie

July 21, 2009 at 11:51 pm
(10) Ken M says:

I take mine around 9:30pm. About an hour later, I get very sleepy and sleep very well until at least 3am if I’ve been drinking lots of caffeine during the day, or until 6am if I don’t drink as much caffeine. I must be one of the lucky ones — my dreams aren’t any more lucid than before. If I don’t take my LDN before bed, I don’t sleep well, and the next day I feel lethargic.

Also, the LDN makes other drugs much more effective. If I take a 4-hour clorotab allergy pill, it lasts well into 12 hours, and I feel very much spaced out. Also I’ve been able to reduce my Celexa from 30mg per day before LDN to 10mg per day after LDN with the same effect.

July 29, 2009 at 3:27 pm
(11) Lucca says:

Hi Julie, I take LDN nightly between 10 and 11pm. I find it makes me quite drowsy in 15-30 minutes, so I make sure I am prepared for bed when I take it. I have not had sleep disturbances, or dreams for that matter. And I am finding that I feel more rested with less sleep (7 hours vs my typical 8-9) which makes me wonder if the quality of my sleep is better. I was prepared to have some insomnia or wakefulness throughout the night, but I’ve only experienced that a couple of times – when first starting and when upping the dosage. Perhaps I am one of the lucky ones, but others reports lead me to believe that there are a lot of us out there that sleep better on LDN rather than the other way around.

On the timing issue, I understand that there is more than one school of thought on this. If one experiences ongoing insomnia or has other nighttime issues then they can look into changing to a daytime dosing schedule. Better some benefit than none at all!

October 1, 2009 at 3:39 pm
(12) Dianna says:

Hi Julie,

I have been taking LDN since 2003 (3 months after MS diagnosis). I started off with the vivid dreams but since then have had trouble sleeping. I take it between 10-11pm. On days I forget, I have to admit that I do sleep better.

November 4, 2011 at 7:57 pm
(13) carol says:

And is it helping?

December 9, 2009 at 3:37 am
(14) Trish says:

I started LDN a little over two weeks ago. It’s going great. The only issue I have with it is that I can’t sleep, pretty much every other night. I’m trying melatonin with it, but it only really works on the “other” night. I’m so tired having been up so much the night before, that I can sleep that night. So every other day is really great :-) Which is far better than no days being great.

Right now, it’s a tradeoff I’m willing to make. I feel so much better than I have in years and years. I don’t know if it will last (please, please, please), but I will be thankful for whatever I can get.

I’m going to lhave to ook into some other ways I can help the sleep situation.

March 10, 2011 at 2:45 pm
(15) Catherine Arton says:

Mabey try TM (Transcendental Meditation)
After two weeks, two short sessions of 20 mins a time, I was sleeping like a log. Also kept me anxious free.
Hope it works. God Bless.

February 1, 2010 at 10:49 pm
(16) Judy says:

I take it at 11 p.m. No sleep effects except weird dreams the first few weeks.

April 6, 2010 at 11:07 pm
(17) Mo says:

I have a problem with insomnia, so feel rested every other day, which is worth it given how much LDN has helped me. I recently tried morning dosing. I felt that it caused daytime muscle cramping and I didn’t sleep any better than night time dosing. So now I take it just as I go to bed – whatever time that is, so that I fall asleep before it kicks in. If I take it an hour before bedtime, I have too much energy to get to sleep. I always wake up at 3 am. I just get up and complete a project, so if I’m tired the next day, at least I got something done!

April 9, 2010 at 1:41 pm
(18) Noel says:

I just started my LDN and it knocks me out. I take it around 9:45 and by 10:15 I can hardly keep my eyes open. I sleep hard until around 3 am then I wake up but I am experiencing lots of dizziness since taking the LDN. When I wake up at 3am everything is spinning. But when I wake up at 5:45 to get ready for work the dizziness has subsided. I was expecting weird crazy dreams but didn’t expect it to make me so tired.

May 31, 2010 at 1:13 am
(19) MissRaquel says:

I just started talking LDN 5 weeks ago and am seeing gradual improvements. I take it around Midnight, but notice that by 5-6 pm I am exhausted with no strength. I am going to start taking it upon waking up and see how I do on it. So far, I LOVE how I feel!!

June 11, 2010 at 11:23 am
(20) maria says:

I just started taking LDN – 1.5 mg at bedtime – my doc thought I should start very low because I tend to be quite sensitive to medications. I take it around 11 PM – just before bedtime – sleep soundly till 3AM or 4 – then can’t get back to sleep. Not sure if I should try taking it in AM or maybe up my dose to 3mg. and see what happens. I have had MS for 13 years – originally RRMS – now SPMS- any thoughts….

August 22, 2010 at 12:37 pm
(21) Girlgeek says:

It is the scientists behind the work at Penn State that initially found it doesn’t matter if you take it at night or in the morning.

And it should be considered for those who take LDN in the morning and still have sleeping issues at night, you may not want to quickly blame LDN, it only stays in your system for 2 hours. It does it’s job and leaves. It may trigger something that affects your sleep later, but that something could be resolved if you know what it is…

The web site above gives information from the scientists. There is some very good information there.

Also, on YouTube, search “how does ldn work” and there is a great video that goes over it so anyone can understand.

September 13, 2010 at 5:24 pm
(22) lisa moulton says:

I just started taking ldn at the 1.5 dose and am noticing major sleep issues, which I already had with the Hashimoto’s. The LDN makes me tired and I feel like I’m sleeping but I’m actually not. It’s very strange, it’s like I’m almost asleep but I can still open my eyes. I think the LDN is working with my Hashi’s but I might have to start taking it in the morning which I keep hearing is not as effective…? Why can’t I be one of the one’s with no side effects? Ugh

December 15, 2010 at 8:52 am
(23) Dalit says:

Has anyone ever heard of LDN treatment for tourrette disorder?

January 1, 2011 at 11:25 pm
(24) Nick H says:

Took it once. Have a whole bottle here. Was tired the first 2 nights but never slept well. One time I tossed all night. Honestly, No pill that F’s up my sleep is worth taking. I’d rather drink myself to sleep. Valium and Ambien please…

January 6, 2011 at 7:29 pm
(25) Gabriel says:

LDN helped wonderfully with MS, but destroyed my sleeping habits. I stopped taking LDN after a year, but the sleep issues continued. It was only until I removed caffeine from my diet that normal sleep returned.

I will get back on LDN now that I’ve resolved the sleep issue. I’m hoping that it was the caffeine and not the LDN alone that made sleep impossible.

November 2, 2011 at 3:19 pm
(26) Carol says:

I am so frustrated with MS treatments. I have done Avonex, Betaseron and rebif. I just can’t do shots every day so Copxane is out. But it seems from what I am reading the LDN might be helpful. I have a neuro appt friday and will speak with him about it. But then I read of the difficulty in getting the low dose, it seems overly frustrating that if this is something that sould help…and then I will have difficulty getting it? I am no looking forward to trying this because it seem to help jsut the symptoms that I have.

November 3, 2011 at 3:39 pm
(27) Tracey says:

Hi Carol. I’ve been through the same MS drugging treatments. Even tried copaxone, for about a week. I’ve had enough of the constant drugging, and the additional drugs I needed for the side effects.
I hope your neurologist will listen. I ended up bringing some data to my family doctor and she prescribed it for me.
I do get sleepy during the day. I have vivid dreams at night, but entertaining ones. And I don’t wake up every 5 minutes to go to the bathroom.
I take 3.5 mg, around 11pm, and have the best sleep I’ve had in years.
I hope it goes well for you, truely wish you well. I most say there have been side effects for me, but good ones. My skin looks younger, and my hair has grown back. (lots of steroids during relapses for me).
Please let us know how it goes.

January 10, 2012 at 12:03 am
(28) L.S. says:

I read a side effect of melatonin was bad dreams; so I quit the melatonin and the bad dreams went away! Sadly, I am still wired by the ldn for several hours, but at least I don’t have bad dreams once I do go to sleep.

January 12, 2012 at 10:05 pm
(29) Jude says:

I started taking it because I was getting pneumonia twice a year..since beginning it, I rarely have a cold.

as a side effect, a good one ! it cleared up my psoriasis..my cousin w much worse psoriasis started taking it and hers cleared up also.I also have m.s. mostly relapsing remitting..which it has had no effect on.

I had crazy dreams for a few wks..don’t think it effect my sleep otherwise…

Because i’m on LDN, the interferon’s would not be effective, or so i’ve read.

January 19, 2012 at 11:59 am
(30) Jen says:

I was taking 3.0 mg of ldn at night and experienced sleep issues. So i switched to day dosing. Long story short within 3 weeks of switching the time I was hit with transverse myelitis suddenly.

I’m fine now, yet i have to wonder if it was due to switching the dosing times. needless to say i’m back to taking it at night. :)

April 16, 2012 at 7:49 pm
(31) Jackie says:

I’ve been on LDN for almost 2 years now for RA. I have to say that my RA is doing great. I have no pain hardly at all. My problem is that I feel like I sleep all night. I wake up once or twice during the night but go back to sleep. I feel like I sleep all night but I still feel tired during the day. I do have vivid dreams which I believe interrupts my sleep. I had a sleep apnea test done and found that i do have sleep apnea. But my doctor believes it is from the LDN. The sleep machine does help when I can sleep with it all night. Still getting adjusted.

I realize now after reading all the comments that it is the drug causing the problem. Anxious to see if the machine helps more. I will keep you posted.

Even with the side effects I would not give up my LDN. I has helped me tremendously.

September 24, 2012 at 12:43 pm
(32) eva says:

hello,

i am getting some serious side effects on LDN and cant find info about it.
my blood pressure rises up to 100/200 , my chest hurts and i have difficulties breathing, i am dizzy and it feels like my entire system goes into overdrive, including tingling in my fingertips and on the top of my head – like and adrenaline overdose. i have discontinued LDN 3 times and every time all the symptoms go away within 2 days. when i start taking it again the symptoms start over after the second -third day.
does anybody know anything about this or has similar side effects ?
thank you

September 25, 2012 at 11:29 pm
(33) Liza says:

I have been taking LDN for 2 years for Primary Sclerosing Cholangitis. I has helped me so much! I have felt more vibrant, alive and energetic than I have in years. It has changed my sleep though. Although I basically sleep on the LDN, the quality of sleep seems lighter, and as a result I can fall asleep almost instantaneously at any point in my day!! This has been inconvenient at my job and makes getting sleepy at the wheel a real problem. Nonetheless, the health benefits have been well worth it!!! As an aside, I am struggling right now to find a doctor who will prescribe it to me. Any suggestions?

October 1, 2012 at 11:45 pm
(34) LYN says:

After much chasing, my GP finally gave me a script for 3mg after the Neuro flatly refused. I have RRMS which they say I have had for at least 18 years but was only diagnosed 4 months ago.I have only taken it for 3 days. no dreams, sleeping fine. My balance is already improving. I have had night sweats the last couple of nights, don’t know if its the LDN or that time of life. Fingers crossed it works as I am unwilling to pump myself full of dangerous chemicals.

October 14, 2012 at 9:20 am
(35) KT Kacer says:

Well, I have only been on the LDN for 10 days, so far only ‘side effects’ have been good ones. if I do not get right off to sleep after taking I notice 30-60 minutes after taking (never really timed it) my nasal conjestion just suddenly clears. I’ve seen a huge decrease in pain symptoms that were becoming problematic. I’ve not seen big improvements yet, but then I have been doing other things for my MS for years. 2-6G(rams) of flax seed oil/day in AM for the omega 3′s for 12 years, my vitamin D level was at 12 (25 is considered ‘critically deficient) so now on 5000IU/day and level has normalized. Then had vitamin B12 tested it was on low side of normal so have been trying to supplement with methylcobalamin (oral and patches) and have only fatigue issues really remaining. Which the LDN seems to not be helping, but as I said, only on 10 days so far.

I’ve also been researching out the nutrients the body needs to make endorphins. B-Endorphin is composed of 20 amino acids: Beta-Endorphin

Tyr-Gly-GLy-Phe-Met-Thr-Ser-Glu-Lys-Ser-Gin-Thr-Pro-Leu-Val-Thr-Leu-Phe-Lys-Asn that is the beta endorphin Amino Acid Sequence.

Supplying the amino acid building blocks for the production of additional endorphins I’m thinking, could be critically beneficial.

October 25, 2012 at 1:16 am
(36) JULIA says:

Hi everyone,
i am currently on Methotrexate and its just not working, looking forward to starting on LDN, apart from troulble sleeping, does anyone acutally see any improvments, i have Sjogrens Syndrome and my son has MS.

October 26, 2012 at 9:46 pm
(37) Ruth says:

I started off on 3mg. That made me feel and look like a zombie. I already suffer from Chronic Fatigue Syndrome, and on 3mg, I was a mess! My doctor lowered it to 1mg for a few months and said he will very slowly bump it up .5mg at a time. 1mg is way better, but the first couple weeks gave me insomnia! Dr gave me low dose clonidine and it is helping me fall asleep. Once I’m asleep, no problem. It’s the getting to sleep part that can be hard for me. Also, I am glutathione deficient(I didn’t know until I saw a specialist about 6months ago. I nebulize glutathione and it helps tremendously! Every person here can benefit from extra glutathione! But taking it orally wont help.

October 26, 2012 at 9:51 pm
(38) Ruth says:

Julia,
You might consider getting your house tested for mold. It is what caused me and my kid’s sicknesses too. We had no idea until I made the dot connection, started researching it, and had the house tested. Most doctors don’t have a clue, but mycotoxins are deadly! We were healthy as could be before a slow leak(we didn’t know about) had started to wreak havoc on our systems.

November 6, 2012 at 7:48 am
(39) Tom C says:

….Just took first dose last night , 3.5 mg transdermal lotion , had sleep disturbance, hope it doesn’t last long !

November 21, 2012 at 8:46 pm
(40) Sarah says:

Hello everyone,

Just starting LDN foe crohn’s and PSC. Now worried about sleep issues since we have a toddler and baby.

Liza- in what ways has your PSC improved? Are you seeing results in lab results or on mrcp?

Thank you!

November 23, 2012 at 8:55 pm
(41) Ms F says:

Very interested to read all this, about to try it myself. I have 5 autoimmune diseases which are out of hand…and terrible insomnia and awful reaction to drugs, it will be interesting to see how I go on this.

December 9, 2012 at 10:19 pm
(42) Rhojan says:

I’ve been taking LDN for 2 months now. I initially had sleep disturbance, dizziness, and blood pressure spikes, but all is well now.

The first time I took it I stayed awake all night. I then tried taking a sleep aid 1 hour before taking the LDN and retiring, but found that if I didn’t fall to sleep right away the LDN took effect and I would still not sleep well. I then used an extra alarm clock to wake me at 1:00AM, took the LDN, and immediately went back to sleep. That worked pretty good. After about 1 month, while staying up late on the weekend, I found that the LDN didn’t bother my sleep anymore. Sticking with it was well worth the effort. LDN’S effect on my squamous cell carcinoma was nothing less than dramatic, with a 60% reduction in lesion size in less than 2 months.

December 14, 2012 at 4:56 pm
(43) gillian says:

Hi all

I have been on ldn for 3 years and i think its the most wonderful drug (even though it really is not a drug technically). Its improved everything, sometimes i even forget i have ms. I just played around with the timing and the amount till i got it right. Happy holidays

December 15, 2012 at 4:53 pm
(44) nitabreak says:

I have been taking it at night for about a year and have very lucid dreams every morning. I try to get up early. This cuts down on them. They are so vivid that they exhaust me. I had them before I started taking the LDN but I think they are getting more exhausting now. I can’t believe some people actually TRY to have these kind of dreams! they are not always enjoyable!
If it keeps up I am going to try taking it in the morning.

January 4, 2013 at 12:45 pm
(45) Jenn says:

I think it does cause insomnia my doctor told me to take it in the morning instead of evening. I was getting very little sleep and I still have been having issues of insomnia.

February 12, 2013 at 2:25 pm
(46) Mona says:

A family member is taking LDN in microgram doses, 5 microgram at night in cream form . for people who cannot tolerate mg doses or get insomnia, they could consider starting with microgram doses and it will still help, see this article,
http://drgimbarzevsky.com/Naltrexone/Low_Dose_Naltrexone_Observations1.html

February 18, 2013 at 2:22 pm
(47) IM says:

For me it makes my heart beat super-fast. Have not read anything about this particular effect anywhere, but this is the fact for me. Due to this fast beating pounding heart I can not fall asleep.
Never tried to use it in the morning, maybe I should.
Oh, by the way – it is with the smallest doze of 1.5mg

February 18, 2013 at 4:25 pm
(48) Bob says:

I have PPMS. Started taking LDN – 4.5 mg about 1 month ago. I also take tizanidine at night for spasticity which knocks me out so I can’t fairly comment on sleep issues. I do believe I’m dreaming more then in the past but it’s not causing me any issues. But I did notice I am waking up less often to go to the bathroom. This happened right away!

My biggest noticeable difference since starting: I’m on citalopram for depression and I was about to increase my dose before starting LDN. After my first LDN dose I immediately felt a change in terms of fatigue or mental clarity. My anxiety or racing thoughts dinished so much that rather then upping my my dose I halved it..and I’m thinking I may wean myself right off the antidepressants.

I did notice that I had some extra bounce in my steps in the morning after starting. Doesn’t last but it was definitely noticeable. I do believe my muscle tone issue has worsenned since starting but I have made some adjustments in my other meds to compensate.

Also noticed a decrease in libido but that’s not such a bad thing unless you have a more willing partner :-)

My main driver for taking LDN was to slow progression. Only time will tell. I’m hopeful!

February 20, 2013 at 2:57 am
(49) d clair says:

I take it at night and it seems to help me sleep. As a matter of fact, I think it is relaxing me and making me a little more tired. I have not tried taking in the am to see if it would give me energy, but I have only been on it for a week, so maybe I am still getting used to it. It seems to be helping my IBS, and hopefully over time it will help my Lyme Disease symptoms.

March 9, 2013 at 11:24 am
(50) Donna says:

Has anyone else had eye problems with the LDN? It seems since I started it I developed something like conjunctivitis. It went away when I stopped it and came back when I restarted it.. I know I have to speak with my MD or pharmacist. Just wondered if anyone else experienced it.

March 12, 2013 at 10:15 pm
(51) Martha says:

Donna – I have been on LDN for about 8 months and my eyes have been bloodshot. Not really an infection just red a lot. I have no problem sleeping, I take it around 10 pm. However, it takes me about 1.5 hours to get really awake in the morning. I have had this problem the last few years with Hashimoto’s but LDN seems to make it worse. I am practically comatose in the morning. I don’t know if there is a connection. I am currently taking 3 mg. having worked up from 1.5. I am fixing to go up to 3.5. So far I haven’t noticed much difference in my Hashis except I can make it through the day without a nap and I have the energy to sit up straight most of the time. My Hashi’s antibodies have been through the roof for a few years and I will have them tested again soon to see if LDN has lowered them at all.

March 13, 2013 at 7:10 am
(52) julia melhuish says:

My daughter was started on a script of 3mg LDN for MS which at first improved her fatigue significantly. However she started to experience serious side effects like breathing problems – slight loss of hair – bowel problems (stools white in colour) etc etc – she reluctantly stopped taking her LDN and symptoms improved. I looked up side effects of LDN and was surprised to read that apart from sleep disturbance there were no significant side effects. However when I looked at the side effects of Natrexone used in treating addictions I was astonished to read that my daughter’s symptoms matched the side effects of high dose Naltrexone. I know that LDN helps so many people with MS and NOTHING helps regulate the Immune System like LDN so I would really like to hear from anyone who knows of an alternative drug that does the same thing as LDN but without the disturbing side effects my daughter experienced.

June 4, 2013 at 4:06 pm
(53) Kelli says:

I’m sleepy all day and having trouble getting up in the morning. I have been on it for about 3 weeks and I’m tired all the time. I take it at night right before I go to bed.

June 10, 2013 at 3:54 pm
(54) Bev says:

I’ve been on LDN for over a year. I take 3.75 as a dose due to my weight.
I take it each night before bed and it knocks me out. It’s been great up until recently. I’ve never slept so good for the past year…HOWEVER…just this last month, I wake up very suddenly about an hour after taking it and I feel like I am going to die…I know…sounds dramatic. My heart is pounding and I feel dizzy…I can’t get my mouth to move properly. If I just relax (which I am trying to do now) and lie there, these things gradually subside and I pass out again. It’s very scary and my husband says I should stop taking it, but I want the ‘good’ days back, of a month ago, when all it did was make me sleep so well!
Anyone else had any side effects just out of the blue?

July 8, 2013 at 2:52 pm
(55) Kat says:

Like Eva and Bev, I too am having similar symptoms and was wondering if it is the LDN causing them. It’s scary. The first month was really good and now I have good days and bad days and find myself wondering if there anything else that would address the Hashimoto. The tension in the chest and breathing difficulty is intolerable as is the dizziness. My blood pressure has been normal thus far. I’m looking for answers too. If anyone has any please reach out to me as soon as possible.

Thank you.

September 7, 2013 at 9:14 pm
(56) Tmac says:

I am a 36-year-old female and have been diagnosed with fibromyalgia, chronic fatigue syndrome, Hashimoto’s, and various stomach and Gastro issues. I also suffer from autoimmune migraines. I just started taking 4.5 mg of low-dose naltrexone two days ago and have not been able to sleep either night and have had very vivid dreams. I am currently taking Pantoloc for my stomach, Synthroid for my Hashimoto’s and I take one quarter of a Percocet tablets with an ibuprofen several times a month for extreme breakthrough pain. I am not sure why my doctor started me on such a high dose of naltrexone as I am very sensitive to medication. I am allergic to codeine, tramadol, and cannot take Cymbalta, Lyrica, gabapentin or Nucynta. Does anyone know if taking a quarter of one Percocet with an ibuprofen from time to time is dangerous with the naltrexone or if it is just ineffective? Also I have a surgery coming up… A septoplasty with turbinate reduction And I will definitely need narcotic pain medication for two weeks following that surgery. Should I just stop the naltrexone altogether and start again after I have recovered? Any information or suggestions or help would be so appreciated. Thank you.
I work full-time and have four children and am just looking to have a day with some energy and minimized pain I hate pain medication and medication in general but so far it seems to be my lot in life. Thank you again for any information or ideas you may have.

September 8, 2013 at 10:59 am
(57) Caz says:

Does it really not matter when you take it?

September 13, 2013 at 6:28 am
(58) ryguy says:

I experience the same thing as many other users of this drug. I take it, fall asleep, then wake up 4-5 hours later wide awake. From my simple understanding of how the drug works and how our physiology works this is when the endorphin blockade ends and the flood of endorphins created by the blockade begins having its effect on the receptors (I also wake up with 0 stiffness. I have AS). For the time being I have resolved the issue by removing some of the drug from the capsule, effectively making a 3mg dose. To me it would seem ideal, though,not to take it at night before bed, but to take it mid-sleep. This way the blockade ends when you have achieved full rest, as well as when your cortisol/beta-endorphin levels peak–shortly after waking. Pain in the AS though, waking yourself up mid-sleep. Any thoughts?

October 9, 2013 at 8:17 am
(59) Marta says:

I’ve been taking LDN since July/August 2013 (2,5 months). I have never slept soooooo well ! I still have vivid dreams and I have them EVERY single night since I started LDN, but I feel that I have never slept so deeply in my whole life.

October 16, 2013 at 5:53 pm
(60) Lana says:

Everything started back in 4yrs ago when I start having severe night sweets that I would wake up 3-5 am with dripping wet from my hair to my feet change my PJs 2-3 times at night. I went to traditional Dr. so he run labs and told me that nothing wrong with me; That I may have sympathetic parasympathetic nervous system issue that they can cut my nerves on my hands to stop severely sweating.
Then my journey of internet research started from San Diego ” Gersons” protocol to New Zealand 1 month ditox to Europe to remove my Tonsils. Meanwhile Im miserable cant work living of my credit cards. Red and experimented 8 books on Diet and diseases.
Until I met Dr. Hoang Who saved my life. After doing some muscle test he put me on LDN 4.5 and Alpha-lipotic Acid( very powerful antioxidant) I do have sleep disturbances, but who cares Im of the couch and running around enjoying life and back to work. Its been only second week since Im on it. My body no longer on fire, very little sweats sometimes and tons of energy.
From my knowledge and Im a RN you should change yr Diet too. You cant expect miracles if you keep putting junk in yr body just because you like bacon and eggs for breakfast.lol
Also Water is very important. If anybody need some directions since I become an expert in Diet, vitamins and best water please email me. lanaeron@yahoo.com
Together we can help and have quality life. :)

October 30, 2013 at 1:13 pm
(61) Dana Edwards says:

I have been suffering from chronic headaches w/extreme light sensitivity for 13 years. I’ve seen every kind of dr., chiros. had acupuncture with 4 different practitioners, tried all classes of drugs, food elimination diets, natural therapies, 3 different surgeries, (peripheral nerve ablation, neurostimulation implant, hysterectomy, & only got worse. I was becoming intolerant to vitamins separately, & in foods, especially vitB’s, probiotics, & completely intolerant to meds & herbs which caused so much more pain! after years of my own research, I determined I had some autoimmune disorder. Since my daughter started working for my GP dr., she had my thyroid peroxidase levels checked, & BAM there it was…Hashimoto’s disease, even though my T3 & T4s were always in the normal range. I found the LDN.org site & convinced my GP to prescribe. it’s been very difficult to tolerate as headaches became worse & NO steep! I’m barely even taking 1mg a day. I have to spread it out into micro doses throughout the day & once or twice when I get up at night to go to the bathroom. even at such a ridiculously low dose, my food intolerances are gone. Since they were the more recent symptoms, I’m hopeful the rest will eventually fade, even if I still take such an extremely low dose. My advice to those who still suffer from side effects is to go less, even when the experts say no. They could be wrong! It’s been almost 2 weeks since I have started LDN. Maybe I will be able to increase further on. I won’t make myself miserable just to follow the rules. Do what works for YOU!

February 9, 2014 at 1:10 am
(62) Kathy says:

Diane, your food intolerances are better after LDN? Really? How is your microdosing working now?

Does anyone else wake up feeling dead? Someone said it’s not in the system that long, but I take it at 9pm and feel like death warmed over at 7am. Any new thoughts on this?

After reading the posts, I’m thinking I’ll try to tough out the bad headaches because some people said their side effects subside after awhile.

February 25, 2014 at 7:37 am
(63) Gerd says:

I take it as morning and have been taking LDN about 4 1/2 years. Dose 4,5
No I take it as evening AND morning. 4,5 x 2
It has help me SO much :) I’m happy! Sleep SO good :) all the time!

March 1, 2014 at 1:01 pm
(64) Toya says:

Finally found a doctor to approve me for the LDN courtesy of Skips Pharmacy. I have only been on the medication for a week. I am on the 1.5 mg for the first 30 days but will increase to 3 after that. Had one vivid dream since I have been on it and legs feel more stronger than they were prior to taking the medication. I know I still have a long way to go but I will continue to see how things progress.

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