Side Effect or Filler Effect of LDN?

[bertiedog]

I started on 1mg liquid LDN 3 days ago. First day I took it at midday when it just arrived but I followed it by a cup of tea and didn't get any side effect apart from having a very good day. However yesterday and today I have had a very nasty reaction starting within 15 minutes of each dose. Yesterday I took it 9 am when I am at my worse anyway energy-wise so today I took it after lunch. Because I have sleep that is very off and on I don't want to take it at night. Because I have adrenal insufficiency I am dependent on steroids but at night I have very little steroid in my body and would be likely to overreact to any medication taken at night.

What seems to happen is it overstimulates my central nervous system because I start feeling very dizzy and my vision doesn't feel right for a while after taking a dose. This makes me extremely anxious and I end up having very loose bowel movements. Dark glasses help a bit. It doesn't seem to settle down until I take Stemetil which my doctor has given me for balance issues in the past. It seems to help within an hour and I start to feel a bit better. Today after just over 2 hours I was able to take my dog for a short walk and was ok.

It is a similar response to a basilar migraine but the migraine doesn't develop so far with LDN. What I was wondering because it happens so quickly after taking a dose is it just a reaction to the syrup that the LDN comes in. I get it from Dickson's Pharmacy in Glasgow, UK and they say the LDN is in just like a child's cough medicine base.

Thanks for any ideas.

Pam

 

[minkeygirl]

I felt that with my LDN capsules when I first started it. I can't take it at night when you are supposed to.

I wonder if there is sugar or something in the base that is making you jittery. Ask the pharmacist for the ingredients and go from there. From what I read LDN has no side effects. (I had horrible headache when I first started that went away).

One thing I'm going to do is get the LDN tablets, crush them and put them in water and take them that way. There is filler in the tablets but it's easy to adjust the dose which is why I'm guessing you got the liquid.

Sorry for some reason I'm struggling to read today so not sure if I missed anything else you said.

@bertiedog You are supposed to take it either between 9 pm and 3 am. or early in the morning because it works with endorphin release (I think someone feel free to correct me).

 

[maddietod]

The dose might be too high. I've been taking 0.25 daily at about 8pm and have had no bad reactions, but also have had more energy and mental clarity. I had tried 0.5 a few months ago, but I got angry.

 

[minkeygirl]

I'm at .5 in the a.m. I couldn't take it at night at all. I got zero sleep.

 

[bertiedog]

I even wondered about splitting the dose, 0.5mg in the am and the same in the evening. Might try it one day but will stick to 0.5 mg in the am for the moment.

Pam

 

[maddietod]

The elimination half-life of naltrexone is 4 hours, for the average person. I know I clear some drugs very very slowly, so there are individual differences. Maybe notice if there's a timing-pattern to your reactions?

Some people split the dose, and some take it every 2 or 3 days.

 

[minkeygirl]

@bertiedog Everythign I've read about LDN is that it works with the endorphin rush so taking it in the middle of the afternoon doesn't do much.

@madietodd is right. It only stays in us a few hours so just odd. I still think something in the base. I suggest you find out what's in it.

 

[bertiedog]

Yes, I will contact the pharmacy on Monday to find out exactly what is in it. I did take 1/2 ml this morning without any bad effects so I think it must be a quantity thing. I have developed a migraine type headache but I did feel awful around 9am this morning. Thankfully a massage helped me to feel a bit better but the bad head didn't start until around 5 pm which is a very unusual time for me to get one.

Its difficult for me with the timing of a dose because I have to take a steroid at least twice daily and sometimes I need a third dose. I am positive that if I was to take it at nights I would have an awful reaction and not sleep for hours. The pharmacy which deals with LDN all the time have said in their printed sheet that in their opinion it doesn't matter when you take it, if it is going to work it will. I know there is a lot of controversy of this timing issue.

Pam

 

[minkeygirl]

Are you not allowed to take the steroid at the same time? The only thing I was aware of that was a problem was other narcotics.

 

[bertiedog]

The Doctor who did the telephone consult with me said I should try to leave it 4 hours between but sometimes that just isn't possible in the day.

Pam

 

[Hip]

Why do you think that the non-active ingredients of your LDN syrup might be the cause of your adverse symptoms, when it is well known that LDN often causes severe side effects and severe reactions in ME/CFS patients?

 

[xks201]

Naltrexone makes me feel like hell at any dose. Probably because it blocks opiate receptors. The people that benefit from it are probably benefiting from its anti inflammatory and immune modulation action. It made me feel horrible. It definitely isn't for everyone. No med is.

 

[bertiedog]

Why do you think that the non-active ingredients of your LDN syrup might be the cause of your adverse symptoms, when it is well known that LDN often causes severe side effects and severe reactions in ME/CFS patients?

I have definitely proved this by having some yoghurt immediately after and following on with some weak tea. By doing this it has stopped the more or less immediate reaction. The syrup seems to be quite sticky so I guess it might have some sort of sugar in it and I am very sensitive to anything with sugar. I am prediabetic so that might also be something to o with this reaction. I gave up all sugar over 10 years ago so this might be the explanation.

Regarding the LDN itself it seems to give me great energy even if I am feeling crap with migraine. I also seem to have a very good mood. I cannot blame the LDN for the migraine at this stage because I get them very regularly anyway. This seems to be due to me running short of my steroid over night so I am going to try taking a tiny dose of hydrocortisone before I go to bed. It all gets very complicated when one is also hypothyroid and also has adrenal insufficiency.

Pam

 

[mermaid]

I was very interested in your post Pam as I too am just starting on LDN (about 4 weeks so far), but in my case am on transdermal cream (cannot tolerate any oral kind), and for the 2nd time round.

First time I used it for a year with no significant sleep issues and only stopped last March 2013 as I was trying out a new thyroid med and didn't want to mix the 2. So this time round I am on T3 (liothyronine) rather than T4 (thyroxine) and stable on T3 only.

I was interested in your comment re 'overstimulates my central nervous system' as I have had a v odd side effect this time at night, that no one in any of the LDN online communities seems to know of. Obviously it cannot be the fillers or sugar and must be the LDN in my case. I have also contacted Dicksons and asked to speak to Mr Dickson but he was away last week.

What happened at night was that I felt kind of wired at first, then would repeatedly jump awake just as I was trying to drop off. Then the pattern changed after a few days and I would fall asleep OK and then in the middle of the night would jump awake very suddenly gasping for breath and coughing violently - similar to sleep apnoea symptoms. I do not suffer from this as far as I know. This was on 1ml of LDN (equivalent to 1mg). It was v scary and I am still recovering from the after effects which have included a flare of an autoimmune condition I have in the mouth (Lichen Planus) caused by the stress I think.

Now I am trying to get my sleep pattern back (I usually sleep well unusually for an ME sufferer), and am trying morning daytime dosing as I understand it's successful for some. So far I am doing better on this and my nights are a bit varied, but as it's been so hot here it's hard to be sure what is causing what yet.

 

[bertiedog]

@mermaid As I am sure you know many people at first suffer with poor sleep on even very small doses of LDN so I wonder if this is what is happening with you. Plain T3 is also very likely to cause overstimulation and can give an adrenaline rush so that might be something else to consider.

I have tried plain T3 but I just don't feel right on it so I do better on 2 grains of Nature-Thyroid and just 0.25 mcg thyroxine. I split the dose each because of my very weak adrenals but I can even get a negative reaction on just 1 grain on occasions which feels like an overstimulation of my CNS.

Anything nasty that happens in the middle of the night and wakes you is particularly difficult to deal with I always think. Have you tried stopping the LDN for a few nights to see what happens?

Pam

 

[mermaid]

Thank you Pam.

It was such a contrast with the first time I took LDN. I expected the disturbed nights then, and yes, I got them but the dreams were so stimulating I didn't mind and they passed off after 2 weeks or so.

However I never had this disconcerting waking with a start and gasping for breath situation as I have this time. It was 4 weeks in and things seemed to be getting worse by the night.

I stopped LDN at night time about a week ago, and had nothing for 2 days/nights to allow my system to settle. I took herbal tabs at night for a few nights to ensure I got to sleep.

Since then I have been using LDN in the daytime, in the morning, and so far that seems to be OK, though my nights haven't entirely calmed down.

Yes, I did consider the T3 only causing problems but as I take the last dose around 5.30pm that seemed unlikely as it's v short acting.

 

[bertiedog]

One other thing to consider @mermaid is that your adrenals might not be strong enough to cope with the T3. Adrenaline rushes are common with poor adrenal function and it is very likely to happen at night as one's blood sugasr falls.

I have stopped the LDN today because I have got into a run of severe migraines and just to be sure its not the LDN I will stop it for a few days and see how things go. I also was taking it in the mornings.

Pam

 

[mermaid]

Thank you Pam. I am sorry to hear about the run of migraines - I am feeling on the verge myself as very foggy brained and fatigued which is always a warning sign. I am still not sleeping properly despite giving up the night time LDN use a week ago, and keep waking multiple times. I too might have to review again the LDN use .....

Yes, I knew that it was said that T3 (and presumably all thyroid meds) could challenge the adrenals. However I have been stable on it for a year, and I deliberately stopped the LDN a year ago because I didn't want to do the 2 together at the start in case of problems and not being able to locate them.

I don't think my adrenal function IS A1 it's true, but I did work hard on trying to correct that for some time before I started the T3. I had a couple of adrenal saliva tests about a year apart, and though the 2nd one was not perfect it showed improvement, and was not rock bottom and the private Dr I see seemed to think it was satisfactory. I also did Paul Robinson's protocol for 6 mths in the hope it would improve things more.

Is it possible that the LDN itself can put a challenge on the adrenals? My thoughts are that any stress to the system, and surely a run of bad nights ARE a stress to a weak system, can be far from ideal for weak adrenals.

Also I have been pushing myself to the limit physically in recent weeks, and in the heat we have had and the run of bad nights I think it's been too much really for the body to cope with. I get so fed up with this illness and try to ignore it at times to my detriment.

 

[bertiedog]

@mermaid Sorry to hear you have been going through a lot but if you read what you have written I think you will have your answer! Its obviously been quite tough for you recently and maybe that is why you have developed those symptoms. I also wonder if LDN could negatively affect the adrenals especially if it is an issue before one starts.

I think I might leave it off for the rest of the week and restart at just 0.5 mg next week and see what happens. My nervous system is bad today from the effect of the migraine which I can still feel slightly. I definitely found just 1 mg of LDN energised me.

I agree with you this is a foul illness. Next week I am going to have blood sent to Infectolab to make sure there is no evidence of borrelia and/or co-infections.

If you wanted to PM me with your adrenal results I would be happy to look at them for you. I do have a lot of experience with the Genova tests because I can order them for people and have seen more than 30 of them (I have a diploma in Nutrition which gives me practitioner status). When I order tests I just charge people what it costs me to help them save some money. Actually I am just about to listen to one of Genova's webinars now. They really are very informative.

Pam

 

[mermaid]

I too was going to leave off LDN until next week and also restart at 0.5. I have to admit that I was not energised by LDN last time, but I do have autoimmune issues (Lichen Planus) and did not have a flare while I was on LDN last time. Also it was a great antidepressant I found for the winter when I can get a bit low.

That is very kind of you re the Genova adrenal results. They are rather on the old side now (over a year) and I should really have it redone as I am fairly sure the first result of the 4 was not correct. I asked people for advice re the T3 and whether I should just take my usual dose before taking the test first thing, and people didn't know, so I took it, but it was a VERY high result. In the previous test it was a bit low, so I think it skewed the result.

I have a visitor at the moment so it may take me a while to dig out the result but I will PM you with them. I have had other tests done by Genova - (the CDSA), and a number of Acumen tests too, and some via Biolab - just waiting for the results of one send off to the US re my gut issues.