Low dose Naltrexone

[Diva55]

LDN & Stomach cramps

Hi
I have FM with some symptoms of CFS.

I started LDN liquid at 1.5ml dose 3 days ago.

Insomnia is a definite side effect which I was expecting - I wake up fully awake after as little as an hour.

But the worst thing has been MASSIVE stomach cramps & nausea. They happen after taking LDN but the worst thing is being woken up by them. The 3rd day they have lasted all day and make eating almost impossible as I feel so queasy.

Has anyone else had the above and if so do they go away in time or do you take something that helps. I know Tums was suggested and I will try some Milk of Magnesia tonight. Anything else that might help?

Is it worth just trying a lower dose?

With the liquid I'm just dropping the syringe with it on my tongue - would it be better to mix it with water or juice?

Would the capsules be a better protection in the stomach?

Also a question for Sushi - Are you doing the Methylation Protocol as well (sorry if I'm mixing you up with someone else).
I'm tempted to stop Methylation supps as they can stir things up.

Apologies for so many questions! Hope someone can help as I've been so looking forward to trying LDN

Best wishes

 

[Sushi]

Hi

I started LDN liquid at 1.5ml dose 3 days ago.

...the worst thing has been MASSIVE stomach cramps & nausea. They happen after taking LDN but the worst thing is being woken up by them.

Has anyone else had the above and if so do they go away in time or do you take something that helps. I know Tums was suggested and I will try some Milk of Magnesia tonight. Anything else that might help?

Is it worth just trying a lower dose?

With the liquid I'm just dropping the syringe with it on my tongue - would it be better to mix it with water or juice?

Would the capsules be a better protection in the stomach?

Also a question for Sushi - Are you doing the Methylation Protocol as well (sorry if I'm mixing you up with someone else).
I'm tempted to stop Methylation supps as they can stir things up.

Best wishes

Hi Diva55,

I also take the liquid but I don't take it "straight"--I shoot it into about 4 oz of water and also have a snack. It could be the empty stomach, it could be taking it "straight," it could be something in the liquid other that the LDN, and of course it could be the LDN. I do take my magnesium dose (magnesium malate) at the same time as the LDN. This is for other reasons but it could also make the LDN go down better.

I did have to take something for sleep at the beginning and each time I raised my dose. But eventually I actually started sleeping better than I had without LDN.

And yes, I have been doing the Simplified Methylation protocol for over 2 years. That protocol, LDN, and Laser Energetic Detox have all helped me a lot.

Hope you figure this out!

Sushi

 

[Sue C]

So much info on this forum....had visited the LDN site a while back on Yahoo but as many, can only focus on a few things. If I want to implement a new tx it takes a bit of effort, energy and time...so many years so much pain and suffering....have read most posts here related to LDN and feel even more pros than cons to a trial. Thanks for everybody's sharing and q&a.(that means you, Sushi!) It echoes how I feel that even a little help is better than none..
Pain has been one of my top three symptoms since the second years of illness over 15 years ago. The gut issues and txs to heal and improve have been limited. Knowing what others have dealt with insofar as the gut (nausea) lets me know what I might encounter along with other side effects or reactions. It is more accepted than narcotics (controlled) and has shown to help similar chronic conditions (MS, FM, etc) Knowing many hx of reactions to even small doses of medications, this sounds like a good tx to try at low doses then slowly increase. I have been on prescribed pain meds in the past, moved to another state and had to go through withdrawal due to lack of informed pain management doctors.not willing to listen or prescribe. This in itself caused damage due to effects of intractible pain and stress response. But that is in past. One fear I have is that if LDN becomes more widely accepted that government via lobbyists would try to control or limit something that is relatively accessible and affordable now.(refer to UK government reaction post.) But in this forum I feel that it is ok to say I am afraid.of that. To have pain management equals quality of life to me, Well, will probably edit most of this rambling... point being that, again am grateful to have this group for support and comfort through these sometimes/often stormy days. Sue C

 

[Sushi]

Sue C.,

Sorry about all the hard times you have had. We all share so many of these stories. I had pain at an earlier stage (probably fibromyalgia) but that has been mostly gone for a couple of years.

With LDN, it is a low risk, low cost experiment and even for those who get reactions, they seem to resolve within a day or two of stopping taking it.

What gave me confidence before I started it was that in its usual 50mg dose, it was regarded as a very safe drug with few side effects. So taking 1 to 4.5mg makes for a very low risk med. It is also interesting that the interest in LDN has been patient-driven, since drug companies don't have much of anything to gain by promoting it (and drug reps seem to educate docs to some extent). Most docs started prescribing it through patient demand. And all the on-going research on it (I think) is at universities since, again, drug companies don't have much to gain here--they can't even put out a patented time-release version since that would defeat the purpose!

Best wishes with whatever you decide.
Sushi

 

[Jenny]

Hi
I have FM with some symptoms of CFS.

I started LDN liquid at 1.5ml dose 3 days ago.

Insomnia is a definite side effect which I was expecting - I wake up fully awake after as little as an hour.

But the worst thing has been MASSIVE stomach cramps & nausea. They happen after taking LDN but the worst thing is being woken up by them. The 3rd day they have lasted all day and make eating almost impossible as I feel so queasy.

Has anyone else had the above and if so do they go away in time or do you take something that helps. I know Tums was suggested and I will try some Milk of Magnesia tonight. Anything else that might help?

Is it worth just trying a lower dose?

With the liquid I'm just dropping the syringe with it on my tongue - would it be better to mix it with water or juice?

Would the capsules be a better protection in the stomach?

Also a question for Sushi - Are you doing the Methylation Protocol as well (sorry if I'm mixing you up with someone else).
I'm tempted to stop Methylation supps as they can stir things up.

Apologies for so many questions! Hope someone can help as I've been so looking forward to trying LDN

Best wishes

Diva - I sympathise with the nausea. For me day 4 was the worst - I could hardly eat anything that day. I've read that it's common in the early days. I don't know TUMS and didn't try anything for it as even a glass of water made me feel worse. Luckily I haven't had any stomach cramps.

Happily, the next day it had got a lot better and now (day 8) it's disappeared. But I still haven't got much appetite.

FWIW I'm still on methylation - been doing it for 2 years and it hasn't helped. But I still do it!

Jenny

 

[Diva55]

Hi Diva55,

I also take the liquid but I don't take it "straight"--I shoot it into about 4 oz of water and also have a snack. It could be the empty stomach, it could be taking it "straight," it could be something in the liquid other that the LDN, and of course it could be the LDN. I do take my magnesium dose (magnesium malate) at the same time as the LDN. This is for other reasons but it could also make the LDN go down better.

I did have to take something for sleep at the beginning and each time I raised my dose. But eventually I actually started sleeping better than I had without LDN.

And yes, I have been doing the Simplified Methylation protocol for over 2 years. That protocol, LDN, and Laser Energetic Detox have all helped me a lot.

Hope you figure this out!

Sushi

Hi Sushi
I just went for a 0.5ml dose last night. Had a little museli with it as eating has been difficult due to nausea.

The cramps were still there today and a very empty feeling stomach, very senstive but so much better than yesterday. I almost gave up yesterday as the pains were so bad but I know I just have to figure it out.

Thanks for your advice Ill try it in water.

Im VERY sensitive to all meds. Even with antibiotics I get constricting chest pains and have been taken to hospital. Ive had this to some degree with almost every med & OTC Ive taken.
Im surprised to get the stomach cramps with such a low dose of LDN!

Ive been considering Magnesium as well. I stopped taking it when I ran out but guess Ill have to get some more as its supposed to help with cramping.

Funnily enough the sleeping / insomnia is not something Im too worried about at the moment although last night I was wide awake after just 45 minutes!
Its the stomach cramps which I couldnt even describe as just cramps but massive pains.

Ill stay with the 0.5ml dose for a while & gradually build up

OFF TOPIC: Ive been doing the Simplied Methylation protocol for a year straight Id started it a year before but it was stop and start then.. The very start of it gave me lots of hope as I saw some good flashes of improvements.

However this whole year has only given very small rises of improvements. Rich suggested maybe ading Aminos & other vitamins which I will consider. Ill carry on with the protocol as I have quite a stock to go through.

Glad the combination has helped you so much.

Thank you so much for answering all these questions its great to have someone willing to help guide us & I so appreciate it.

Best wishes

 

[Diva55]

Diva - I sympathise with the nausea. For me day 4 was the worst - I could hardly eat anything that day. I've read that it's common in the early days. I don't know TUMS and didn't try anything for it as even a glass of water made me feel worse. Luckily I haven't had any stomach cramps.

Happily, the next day it had got a lot better and now (day 8) it's disappeared. But I still haven't got much appetite.

FWIW I'm still on methylation - been doing it for 2 years and it hasn't helped. But I still do it!

Jenny

Hi Jenny
Thats encouraging to know that nausea dissapeared.

Ill stay with 0.5ml for a while and slowly raise it. Its so damn annoying to get such a bad initial reaction to such a low dose. I want to push through but with the massive FM pains I have adding more to the mix just tips me too far to cope..

Hey you me & Sushi will have to form a girl band The Methylation Naltrexone Girls! (not very catchy though)

Sorry to hear that Methylation hasnt helped. Have you mailed Rich to ask for advice?

I very much appreciate your updates as you are just 4 days ahead of me so its good to see how you progress in these early stages.

Hope it goes well for you & your appetite comes back.

Best wishes

 

[Jenny]

Hi Diva

Yes, Rich has been very helpful. May need aminos,he says, but I'm on about 15 supplements already and can't cope with anything else.

Had a bad inflamed and burning rash on face yesterday - never get rashes normally - must mean something - I've heard rashes are common in early days too.

Good luck

Jenny

 

[Diva55]

Just spoke to Dicksons (where I got the prescription from) who are very helpful.They have an LDN helpline.
I explained my problems with taking LDN & she said a lot of people have stomach problems initially. She gave me the following advice:

- Dont take the liquid in water squirt directly onto tongue
- Can have a drink after taking it
- Reduce dose down to 0.5ml for a couple of weeks so body gets accustomed to it.
- Have a small snack with it e.g. piece of toast
- Doesnt know about whether milk of magnesia etc helps with it as she hasnt heard about it
- Some people cant tolerate LDN and have had to stop it
- Ring her back in a couple of days to discuss any further problems.

Its really great to have this sort of backup.

 

[Diva55]

Hi Diva

Yes, Rich has been very helpful. May need aminos,he says, but I'm on about 15 supplements already and can't cope with anything else.

Had a bad inflamed and burning rash on face yesterday - never get rashes normally - must mean something - I've heard rashes are common in early days too.

Good luck

Jenny

Hi Jenny
I've not heard about rashes but there is so much info on different boards I'm trying to take in. Hope it settles down soon & that is is a good sign for you!

I know what you mean about the amount of supplements to take - there are days I just can't face them and adding in more just depresses me as well as the cost of them.
I'm trying to cut out some but it's difficult to know which ones.

Best wishes
Diva

 

[dancer]

After a few weeks at the full 4.5 dose of LDN, I was still having some problems. More IBS issues (which hadn't been a problem for many months), head aches, and then one day a really dark depression that flared out of nowhere.

So I went back to the half dose. Much much better now. Am sleeping well, waking up feeling "bright"... have a bit of morning energy. I still get depleted quickly and spend most of the day in bed, but much better than before I started the LDN.

I'm kinda small...so I'm wondering if for me the lower dose is what's optimum for me. I think I'll stay here awhile before trying to increase again.

 

[Sushi]

I'm kinda small...so I'm wondering if for me the lower dose is what's optimum for me. I think I'll stay here awhile before trying to increase again.

Hi Dancer,

The practitioner who has had the most experience with LDN (at least 10 years) does consider weight in adjusting doses, so if you are small, the "average" max dose of 4.5mg might indeed be too high for you. Many people experiment till they find the dose the works best for them.

Hope you find just the right dose. It took me about 4 months to work up to 4.5, so you also may have moved up too fast and your body didn't have time to acclimate.

Sushi

 

[oerganix]

Hi Dancer,

The practitioner who has had the most experience with LDN (at least 10 years) does consider weight in adjusting doses, so if you are small, the "average" max dose of 4.5mg might indeed be too high for you. Many people experiment till they find the dose the works best for them.

Hope you find just the right dose. It took me about 4 months to work up to 4.5, so you also may have moved up too fast and your body didn't have time to acclimate.

Sushi

I second that. And I do wish there was more research on using LDN. I listened to a radio program in Europe, Frank's link in an earlier post, and they are using it in children. They talked about formulating it in a good-tasting paste or cream for palatibility. One guy says he puts his in warm herbal tea before going to bed. So, there are difference ways to deliver it.

I am definitely having more energy. I went out shopping yesterday, something I don't enjoy in the first place. Here in Nicaragua, that means going to the open air "bazar' type of place, where they sell everything under the sun. It's crowded, noisy, smelly and stressful, with the possiblity of pickpockets, etc. Many times in the past I have ended up crashed out and weepy after such an excursion.

Yesterday, I bought a new pair of sandals, a bootlegged copy of Avatar, the movie, a months supply of rice and beans (the staple foods here), a months supply of cat food and powdered milk, fresh vegetables and fruits, and fresh herbs. I felt fine, except for some stress at the amplified music from several directions (horrid rap-like music in Spanish!).

I got myself home in a taxi and I must have looked friendly enough to flirt with as the taxi driver did just that. When I am feeling snarly, they don't do that! I usually have to go straight to bed and spend the rest of the day and the next day in bed. Not yesterday. I finished the day upright, more or less, cooked dinner and watched a movie with my companero (significant other).

Now that's improvement. (Still doing 4.5mg/night and sleeping better than I have in decades. Even remembering dreams!)

 

[Jenny]

Great news Oerganix!

No doubt that's it's really helping you - that's a great encouragement for the rest of us. And you've been on it less than a month!

Jenny

 

[Diva55]

LDN Side effects? - Spots underTongue. itchy hands

Hi
I'm 6 days in with LDN and had to reduce my dose from 1.5ml to 0.5ml due to extreme stomach cramping. Cramps are better now just stomach senstivity.

But I woke up this morning with the tip of my tongue very sore and red spots under my tongue again very sore. Has anyone else had this?

Also for the past couple of days I've had extreme itching on the top of my hands without any sign of a rash . Anyone had this?

I rang Dickson's Chemist & she checked with the Pharmacist & said no-one had previously reported symptoms like these.

She gave me the number of the LDN Research Trust as they may be able to help me but they were unavailable.

I think it was Jenny that said she had a rash on her face so that could equate to my itchy hands but the tongue problem is more of a worry.

Any help on this please - should I stop LDN?

Many thanks
Diva

 

[Jenny]

Gosh Diva - it's really difficult to know what to do isn't it.

I think if it were me I'd press on unless these problems got a lot worse. But I know nothing about medicine so please don't take this as medical advice!

My rash went away after an hour, but it was pretty bad and face started to swell. It hasn't recurred so far.

Have you googled sore tip of tongue and red spots under tongue?

Jenny

 

[Diva55]

Gosh Diva - it's really difficult to know what to do isn't it.

I think if it were me I'd press on unless these problems got a lot worse. But I know nothing about medicine so please don't take this as medical advice!

My rash went away after an hour, but it was pretty bad and face started to swell. It hasn't recurred so far.

Have you googled sore tip of tongue and red spots under tongue?

Jenny

Hi Jenny
I googled on your advice - thank you.l My goodness there were some horrible pictures to look at and the wide variety of diagnosis were mostly scary so I thought it best not to go that route.

Obviously I'll have to wait until Monday now to see a doctor so I'll do that.

I'll try mouthwash & bicarbonate of soda gargle to see if they help.

Your rash sounded weird and the swelling very unpleasant. Glad it went away so quickly.

I'm trying to stay positive and thinking LDN may just be stirring up old bugs but it's not easy to stay calm when odd things happen.

Sigh...With FM every day is a "surprise" on the pain front so I don't need to add in weird things as well.

Thanks for your reply.

EDIT to add the following:

LDN RESEARCH TRUST
A lovely lady from the above rang me & gave me some good advice:

- She had not heard about tongue spots or itching as side effects & she has dealt with many thousands of people taking it.

- FM / ME patients were the most sensitive to ALL drugs.

- I should not take any tonight & leave it till my symptoms had died down.

- Then start with 0.1ml and wait until I standardised with that, maybe 2 weeks before going up VERY slowly.

- If insomnia was a problem then I could take it in the morning with breakfast. Some MS patients do this & feel very energised in the morning and sleep better at night.

- It doesn't matter when you take it as it's down to the individual.

- Some patients never go beyond 3ml as it's too much for them so no matter how low, whatever works is what you aim for. You have to experiment with the dosage & the time of day.

It’s a very good web site / forum if you want to check it out: (They have free car stickers to spread the word!)
www.ldnresearchtrust.org

 

[Sue C]

Thanks for your kind reply, Sushi.. You have been very informative in sharing your LDN experience. Am seriously considering a trial , hopefully this year. As others have stated, one wonders the best time to introduce a new med to the arsenal. I know which meds have been 'safe' for me the past decade and it takes courage and energy to try a new one. Have bookmarked a few US pharmacies that use naltrexone for many patients. Also found an excellent link here on LDN by Spindrift...(1/29/10) http://www.youtube.com/watch?v=jtc2JARVpPw which has a Stanford MD give a lecture on pain management..about half way through a little past 1/2....he discusses naltrexone and addresses my concern by saying that no worry about big name drug cos. getting it as it is GENERIC and has been around for years, He cautioned that more clinical research studies should be done but he has an upbeat, informed presentation. Thanks for that link,Spindrift. Sue C

 

[Jenny]

Week 2 on LDN

Summary - death warmed up.

Day 8 - 1.5mg red swollen burning rash on face. Only lasted one hour. Quite a good day. Slept well.

Day 9 - 1.5mg Another quite good day. Slept well.

Day 10 - 1.5 mg OK until 2pm then crashed. Couldn't keep awake for most of pm. Felt dreadful. No appetite.

Day 11 - 1.5 mg. In bed all day, flu symptoms, chills, sweating, hot flushes, could hardly eat anything.

Day 12 - 1.5mg. Even worse. All above plus burning back pain, very painful glands in groin.

Day 13 - 1.5 mg. As yesterday. Afternoon suddenly very depressed - slept for 2 hours.

Day 14 - didn't take LDN as had to get to dentist and couldn't risk feeling worse. Felt better, a bit of energy. Still fluey and achey but that's my normal state anyway.

I've stopped olive leaf as this may be contributing to worsening symptoms.

Initial cheeriness has disappeared. But sleep is good and I still wake up early and fairly refreshed.

I hardly ever react to anything I take but the exacerbation of symptoms makes me think something is going on. The only other things I've ever got dramatically worse on like this are tinidazole and Qing Hao (Chinese herb version of artemisinin) and they're supposed to kill pathogens.

Got to press on - will reduce dose to 1mg for a while.

Jenny

 

[Diva55]

Week 2 on LDN

Got to press on - will reduce dose to 1mg for a while.

Jenny

Hi Jenny
Sorry to hear you're having a tough time. As the LDNResearch lady said people with FM / CFS / ME are the most senstive to drugs. I was hoping that LDN would be different & I could avoid all the usual awful side effects.

As I said I've been advised to go down to 0.1ml which is tiny but it makes sense to start really low to get the body adjusted if side effects are a problem.

Maybe you consider going down even smaller than 1mg & working up gradually.

Good luck
Diva