Low dose Naltrexone

[moonchild]

trace, i wanted to thank you for sharing your experience...i haven't heard too many people mention the facial pain as a dominant symptom, and for me it's that and the accompanying constant headaches and neck pain that are absolutely unbearable (and i have found nothing at all to help with). in the past LDN has been something i've dismissed because i seemed to come across lots of people having bad experiences with it. however i have a couple of people encouraging me to give it a try before i reach my 'last option' (pain specialists words) of ketamine. you might just have given me the push i needed to have a proper chat about it with my doctor and see if it is worth a try - so thankyou.

I started taking LDN about a week ago.
I got a prescription from my lovely GP, who even faxed it through to Glasgow for me. The LDN then arrived in the post.

The recommended initial doseage level is 1.5ml, which I took the night it arrived. Oh dear! Palpitations, nauseous, dizziness, extreme brain fog during the night, then barely able to move - leaden limbs, dizziness and constantly falling asleep the next day - awful, horrible, scary!

The following night I dropped the dose to 0.5ml, no bad effects at all, and the facial pressure and pain that I've had for many months seemed to go.

2 nights at 0.5ml, then I upped it to 0.6ml for a couple of days - bit sleepy, bit foggy-brained, and about 20 mins of palpitations at night, but otherwise nothing bad. I've now gone up to 0.75ml - still a bit 'fog bound' and palpitation-y but nothing worse. Still clear of the facial pain etc, and I think, maybe my legs are feeling a bit less 'tight' - I tend to get a lot of calf cramps.

Will creep up to 0.8ml tomorrow, and see what happens.

Hurray! I'm having dreams again - major plus - I seemed to stop dreaming when the ME started.

It does cause sleep disturbance at the moment and I've been avoiding bedtime because of the discomfort of the palpitations. Hopefully I can get round that, or maybe it'll sort itself out in time.

It's not a wonder-drug, so far (about 1 week in, lol), but it's definitely an improvement not having the facial pain and pressure, and, it's often accompanying, dizziness and vertigo.

So, I'd say start at much lower than the recommended initial dose and work up. If there are no bad effects, bump the dose slightly every couple of days?

Trace

 

[dotdot]

Hi Moonchild,

the facial pain and pressure thing (and dizziness, sometimes progressing to full blown vertigo) has been a problem for me for a couple of years, initially diagnosed as Sinus infection. After a year of antibiotics and steroid sprays etc etc etc, the Consultant has decided it's not a Sinus problem after all, and could be Migraine accompanying Vertigo. I decided to try LDN because I read somewhere that it can help with Migraine. I also get Cluster Migraines and Ice Pick headaches, though only intermittently (thank goodness). Will keep a note of this and see whether the headaches are generally occuring less than usual.

Previously, the only thing that had worked 100% to relieve the facial pressure and pain was an injection of Cyclizine, used to stop the uncontrollable Vertigo and vomiting after I ended up in A&E one day.

No-one has come up with an explaination why this particular drug helped, and nobody will prescribe it unless I'm actually throwing up... use as a preventative seems to be a no-go, unfortunately.

Anyhow, the LDN cleared my nose etc within a short period of taking it - luxury!

I didn't take the LDN last night as I'm switching to a daytime dose, but the pressure in my face has been building all day. I've just taken a 0.8ml dose, a few minutes ago, so hopefully the face will feeling a bit better again soon...

One other thing that has helped for a week or so at a time, is Cranial Osteopathy. I see a woman in London called Susan Turner, I know she teaches in Australia sometimes, so there may well be practitioners who work in a similar way to her, near you? (sorry, I know Australia is BIG and it's probably unlikely...)

Trace

 

[alice1]

I've started and stopped LDN a few times but never because of the LDN itself.
I always start back at .5 which for me has been the way to go.After 3 months I'm at 2mgs,dream are like epic movies but am starting to get adjusted to this dose.I'll stay here for several months then go to2 1/2.
I had been at 4 mgs and I did notice a wonderful difference which is why I continue with it.
Best of luck dotdot...slow and low seems to be key with this med.

 

[moonchild]

hi again trace...just a quick hello and thankyou for the reply - totally crashed at the moment but get back to you properly soon...

Hi Moonchild,

the facial pain and pressure thing (and dizziness, sometimes progressing to full blown vertigo) has been a problem for me for a couple of years, initially diagnosed as Sinus infection. After a year of antibiotics and steroid sprays etc etc etc, the Consultant has decided it's not a Sinus problem after all, and could be Migraine accompanying Vertigo. I decided to try LDN because I read somewhere that it can help with Migraine. I also get Cluster Migraines and Ice Pick headaches, though only intermittently (thank goodness). Will keep a note of this and see whether the headaches are generally occuring less than usual.

Previously, the only thing that had worked 100% to relieve the facial pressure and pain was an injection of Cyclizine, used to stop the uncontrollable Vertigo and vomiting after I ended up in A&E one day.

No-one has come up with an explaination why this particular drug helped, and nobody will prescribe it unless I'm actually throwing up... use as a preventative seems to be a no-go, unfortunately.

Anyhow, the LDN cleared my nose etc within a short period of taking it - luxury!

I didn't take the LDN last night as I'm switching to a daytime dose, but the pressure in my face has been building all day. I've just taken a 0.8ml dose, a few minutes ago, so hopefully the face will feeling a bit better again soon...

One other thing that has helped for a week or so at a time, is Cranial Osteopathy. I see a woman in London called Susan Turner, I know she teaches in Australia sometimes, so there may well be practitioners who work in a similar way to her, near you? (sorry, I know Australia is BIG and it's probably unlikely...)

Trace

 

[Marlène]

Hi everyone

I wanted to share my experience with LDN.

This is my advice:
Week 1 - 4: 0,25 mg
Week 5 - 6: 0,50 mg
Week 7 - 8: 0,75 mg
Week 9-10: 1 mg
...

If you take LDN, stop eating gluten, milk, soya or spinach, they interact with LDN. You'll feel worse and it'll have less effect.

With this protocol your immune system will not get too much stressed. Still you will sleep worse the first weeks, you'll get fever (yezzz), feel sick, bowel dysfunctions, feel like in an emotional rollercoaster, ... It makes your body work, clean up the mess and put things back in balance!

After six weeks you probably get a brief moment of euphoria and then you'll start to notice the good things.

The pain will diminuish, "tingling" will get better, stamina too, brainfog lessens, you might be able to listen to (loud) music, etc.
My dyslexia has almost completely gone after 3 months, I can listen to music (!!), I stopped medication for hypothyroid, less brainfog, higher average body temperature, hardly any PMS anymmore, ... probably forgot things.

It will be ups and downs but hey, the road to recovery isn't a straight line.

I tried LDN a first time this summer at a higher dose and the pain was unbearable but with this protocol, it worked!

In my blog you find an overview of my bioritme under the page Low Dose Naltrexone

red= sleep
yellow = bedridden
green = siiting or active

Notice the evolution from bedridden to activity overtime

http://opstaanmetmecvs.blogspot.com/p/low-dose-naltrexone.html

 

[Diva55]

Dr. Tom Gilhooly's Newsletter

This was posted on an LDN Yahoo group. Interesting explanation about how LDN acts on addiction & FM.

Please see the latest article from Dr Tom Gilhooly which appeared in Februarys LDN RT newsletter:-

I have been involved with LDN prescribing for seven years and one of the reasons I was happy to prescribe this low dose version of the drug naltrexone, was my long term experience in addiction medicine. I have used full strength naltrexone as an addiction treatment for over 20 years. Our practice still provides medical cover for four addiction services which brings me into daily contact with patients with an addiction problem.
On occasion there are patients in the addiction services who would also be suitable for the immune-regulating properties of low dose naltrexone.

I have now seen several patients with fibromyalgia who claim that the use of illicit drugs such as heroin was principally self medication for pain relief. Fibromyalgia is a well recognised medical condition but the management of this is difficult and it is certainly feasible that some patients would become disillusioned with standard medical treatments and seek their own solutions.

Heroin may be a nightmare drug in many ways but it does provide very good pain relief. Knowing both the difficulty in treating fibromyalgia and the power of heroin, it was not surprising to find a number of patients who had decided to use this as their treatment of choice. This combination does also present a unique treatment opportunity. If the patient can be successfully detoxed from the opiates, they could potentially use LDN as both an immune modulating treatment and as an opiate blocker.

Naltrexone is an equal mixture of right and left handed molecules each with different actions.

The right handed molecules, dexoLDN, act as opiate blockers occupying the opiate receptors without stimulating them. This is known as an opiate antagonist activity and in low doses it provokes an increase in natural opiates known as endorphins. It has been proposed that this is the mechanism of action for LDN and indeed has been used by some clinicians as an addiction treatment, as the increase in endorphins could reduce the craving for opiate drugs.

The left handed molecule LevoLDN, has been shown to have direct immune modulating effects. This is the most likely mode of action in immune related conditions such as multiple sclerosis and fibromyalgia.


The mode of action in addiction patients is almost certainly from the dexo portion of naltrexone where the opiate receptors are completely blocked, preventing heroin or other drugs from working. The problem with naltrexone as an addiction treatment is that the opiate blockade also blocks the activity of endorphins which often leaves the patients feeling flat and sometimes depressed which leads to poor compliance and retention in treatment.

In patients with both opiate addiction and an immune related condition, LDN has a unique double action which can be utilised if the patient wants to detox from opiates. I recently had an opportunity to treat a patient with both fibromyalgia and heroin addiction. They were keen to detox from heroin and also to try this new treatment for fibromyalgia.

A recent double blind study of LDN in Fibromyalgia carried out by Jarred Younger in Stanford University has shown improvements in both pain and fatigue. The patient was an inpatient in one of the drug centres and we had the opportunity to detoxify them from opiates and have a four day gap before starting the LDN. This gap is vital as any residual opiates in the system would be displaced by even the 1mg dose of naltrexone. I have tried this in the community and it has backfired as the patients were not completely honest about their opiate use which led to severe withdrawal symptoms. Fortunately, on this occasion we were able to verify the opiate-free period and things went smoothly. Not only did they manage to start LDN successfully, they also declared that their first night on LDN was the best night's sleep they had had for 16 years! The patient now has a new and hopefully effectively treatment for LDN, and they also have an opiate-blocking drug which will prevent opiate abuse.

 

[Rita]

https://ldndatabase.dabbledb.com/page/other/tbdgPxzK#

Data base por LDN in some illness

 

[undcvr]

What the heck I thot I would try LDN too since everyone else is trying this. Prior to this I have been (and still taking ) Valcyte which has pretty much cleared up my cfs symptoms. I started with 1.5 then 3 then 4.5mg, all this over 2 weeks.

I find that the dreams I am getting are crazy and bizzare involving sacrificing maine coon cats that willingly expose their under bellies only to be totally healed later. On top of that on the highest dose of LDN i wake up in the morning feeling empty and 'feelingless' inside ? Like I am devoid of feelings. It is a weird sensation that I find difficult to explain. I think my hearbeat increases a little through out the day too. Yesterday for a few hours in the afternoon, I fell into a state of complete despair in the early afternoon. By evening, I had recovered.

Apart from trying to interpret my dream, does anybody else have reactions like that ? Does it go away after awhile on the same dose ?

 

[Sushi]

What the heck I thot I would try LDN too since everyone else is trying this. I started with 1.5 then 3 then 4.5mg, all this over 2 weeks.

On top of that on the highest dose of LDN i wake up in the morning feeling empty and 'feelingless' inside ? Like I am devoid of feelings. It is a weird sensation that I find difficult to explain. I think my hearbeat increases a little through out the day too. Yesterday for a few hours in the afternoon, I fell into a state of complete despair in the early afternoon. By evening, I had recovered.

undcvr,

I posted something about this on another thread but I'll post here too. You raised your dose pretty fast--anyway, it took me 4 months to get up to 4.5. As LDN blocks your opiod receptors, you may feel "despair" cause they are being blocked too long. This is one reason they say to take it between 10 p.m. and midnight--so it has worn off by morning.

Some find that LDN is staying in their bodies longer than others and do better taking it every other day--so it doesn't build up. Or, consider dropping your dose back down and see what happens. I have never had this "blue" reaction but some do--particularly when they take it during the day.

Glad the Valcyte is working! And, unusual and vivid dreams are also often reported.

Sushi

 

[undcvr]

Sushi, I did take it at nite, I am aware of its opiod blocking effects. What I was not prepared for was how quickly i was overcome by the feelings of dread and despair when it hit me. It felt like I was being hit by a train or a wall. And at the peak of the depression I felt like i was falling endlessly down a bottomless pit - no end in sight. It was very very scary. I am also feeling groggy and with less energy throughout the day. Cutting back on the dose and dont think I will take 4.5mg again for awhile. At the lower doses I wasnt sure it was doing anything but this is scary stuff.

 

[juniemarie]

undcvr I have been on LDN for about 5 mos. Went up very slowly to 3.5. It was doing great for my energy and mood. With a surprising side effect of getting rid of an allergy to animals that I have had for 45 yrs!! Then because I am math stupid and was having trouble getting the syringes that I measured it with to work for me I switched to another measuring devise and between the cc's, ml's and mg's I got completely turned around and mixed up on the dosing. Thanks to some folks on the LDN yahoo forum who got me straightened out on the math I realized I had gone from 3.5 to .5 for about 2 weeks. So had to start over and this time I went from .5 to 4 in 2 weeks. And I am experiencing just what you describe. Just kind of down and as Sushi puts it "blue" with a very dark outlook.....despair is a good word for it. Hard to live like that. Also really really fatigued. I dont understand it as I was doing so well on it but maybe increasing it so fast the second time has something to do with it....dont know. But I think I will drop down to 2 and see if this lifts. So do try decreasing to see if the despair lifts......we can only hope!
Sushi mentions some people need to skip a day as it builds up and I have often read that and wonder how you know if your body does not clear it well.
I hope decreasing the dose works for both of us. But you said you did not notice any thing at a lower dose. I think that may be because you went up so fast. This time stay on each dose for maybe 2 weeks that will really give you a chance to fully observe your body's reaction.

 

[*GG*]

I had a rough go with LDN at first, I stopped it for a week or so, consulted with my Dr. I gradually increased my dose also, 1.5, 3 then 4.5. I have been on it for about 1.5 years. I think it took me a couple of months to get up to 4.5mg, but I also did this during a major flare up of my symptoms, so thought my experience was basically because of that. I recently ran short, at the end of last year, I saw I was running out, so I did every other day (4.5) for a few weeks and went back to 4.5 mg/day since the beginning of the year with no known issues!

GG

 

[Diva55]

Video on How LDN works in the body

In case people haven't seen this. A very interesting (& simple!) video on how LDN works in the body.
Good website for info on LDN as well.
http://www.ldndatabase.com/

 

[Xandoff]

I too just started 4.5 mg LDN for three nights and had terrible pain, the blues and more pain. I will contact my Doctor and get started at the lowest dose and see if I can build up to the 4.5. I wonder if the fact that I take 30 mg of oxycodone a day, makes any difference. I had to get up in the middle of the night and take 15 mg of oxycodone to knock the pain down, followed by a horrendous day. It is helpful to read all these posts and to find the chronic pain thread. Good luck all.

 

[Sushi]

I too just started 4.5 mg LDN for three nights and had terrible pain, the blues and more pain. I will contact my Doctor and get started at the lowest dose and see if I can build up to the 4.5. I wonder if the fact that I take 30 mg of oxycodone a day, makes any difference. I had to get up in the middle of the night and take 15 mg of oxycodone to knock the pain down, followed by a horrendous day.

Hi Xandoff,

I'm pretty sure that oxycodone works through the opiod receptors--which means you can't take it with LDN. LDN blocks those receptors for about 6 hours so your oxycodone won't work. This is a problem for those on pain meds. They have to be really lowered or stopped before taking LDN.

LDN does help a lot of people with pain, but they have to stop any drugs that work through those receptors first.

Sorry you had this hard experience!

Sushi

 

[jstefl]

After a break, I have started taking LDN again. I am starting on .2 mg this time.

That seems like a tiny amount, but it has noticible results for me. I started taking it just before bedtime, but after a couple of days, it interfered with my sleep, so I switched over to mornings.

This dose seems to be working well for me. I feel much better during the day, and can still get to sleep at night. So far, this dosage doesn't seem to be building up in my system as the previous higher doses did.

I am going to increase the dose much more slowly that I did in the past. I plan on staying at .2 mg for at least a month before I step up to a higher dose.

I have always considered myself as someone that was fairly tolerant of drugs, so this experience with LDN is unusual for me. I have taken Valcyte, oxymatrine, artesunate, and other things without a problem. I am determined to make this work also. My good days on LDN are enough of an improvement that I believe it is worth any amount of suffering to get used to it.

John

 

[JanisB]

LDN and MSH

Hi all,
In response to what Sushi wrote below, I agree totally. But I also want to add that the hypothalamic hormone MSH (alpha melanocyte stimulating hormone) makes melatonin and endorphins. According to Ritchie Shoemaker, it is low in everyone with CFS. The optimal range is 35-80. Many PWC's have non-existent MSH. Xandoff, you should ask your Dr. to test your MSH. (Go to Shoemaker's SurvivingMold.com and follow the links to diagnosis and then lab tests to get the information together for your PCP. If you still have some MSH left, you might get a great response from LDN. If not, the likelihood is slim because LDN works by blocking the endorphin receptors and therefore stimulating the body into making more of its own natural endorphins.
JanisB

Hi Xandoff,

I'm pretty sure that oxycodone works through the opiod receptors--which means you can't take it with LDN. LDN blocks those receptors for about 6 hours so your oxycodone won't work. This is a problem for those on pain meds. They have to be really lowered or stopped before taking LDN.

LDN does help a lot of people with pain, but they have to stop any drugs that work through those receptors first.

Sorry you had this hard experience!

Sushi

 

[aquariusgirl]

does ldn reduce TNF alpha?

 

[drex13]

I too just started 4.5 mg LDN for three nights and had terrible pain, the blues and more pain. I will contact my Doctor and get started at the lowest dose and see if I can build up to the 4.5. I wonder if the fact that I take 30 mg of oxycodone a day, makes any difference. I had to get up in the middle of the night and take 15 mg of oxycodone to knock the pain down, followed by a horrendous day. It is helpful to read all these posts and to find the chronic pain thread. Good luck all.

You have to be off of all pain meds (opiates) for 2 weeks before you start LDN. Check out the website LDN.org or the LDN group on Yahoo!.

 

[heapsreal]

LDN is suppose to increase nk function and other immune markers, has anyone got before and after test results to back this up other then feeling generally better, although feeling generally better is a good thing but just after some personal evidence on immune markers and LDN.

cheers!!!