LDN- I am afraid to take this.....

[soxfan]

I know there has been alot of discussion about LDN. My doctor wants me to start this and I am really afraid to. I have had many horrible side effects from anything that messes with my brain chemistry. I have had especially bad times with anti depressants and certain sleep meds like gabitril and trazadone to name a couple.
My husband is a pharmacist so he can compound a tiny dose for me to start but I am still scared! Has anyone had success in using this or had any side effects that were bad?
I do take lunesta to sleep and it is the only thing that works and doesn't mess my head up so I am also wondering if LDN will do anything to disturb my sleep.

Any thoughts or comments? Thanks......

Kim

 

[sela]

ldn generally disturbs sleep for some period of time . i found that milk thistle took care of this problem , so for me, it must have had to do with clearing the liver. i liked ldn and had positive effects. i think if you start with a tiny dose nothing very dramatic will occur. btw, i also could not take anti-depressants at all, none of them.

 

[Min]

I was unable to sleep at all on only the tiniest doses of LDN, & my already bad fibro pain levels went through the roof. it worries me that some people are promoting it as a wonder drug for us.

 

[justy]

Hi Soxfan, i dont really know anything about LDN, but like you i have also had very severe side efects form antideressants and now dont take anything that messes with brain chemistry as i just cant handle it. I'm no sure what is the best course of action for you. For me i always try and see if there is an alternative approach.
It is good though that you can get your husband to make it up for you in smaller doses. Maybe this is the way to go, to try it and see how you feel/react.
Take care
Justy

 

[soxfan]

I have a terrible time with any medication that messes with my brain...even a 1/4 the dose I can't handle it at all. That is why I am worried about trying this. I have taken sleep medications that give me a hangover for 24 hours or longer...I just don't want to feel worse than I already do.
I suppose if my husband makes me like maybe 1/2 milligram I could try it. My doctor tried to get me to take this last year but I was too terrified as I just had a horrible reaction to celexa. I have read alot on LDN and just am not sure what it would do to help me.
Thanks everyone for your responses...I am totally unsure what to do.

 

[jstefl]

I have been taking LDN for a month now. I started with a 1 mg dose, and have stayed there. I tried 1.5 mg , but went back to the 1 mg dose.

I am taking it in the evenings, right before bedtime. For the first few days, it seemed to make me sleepy, but after that, it seemed to keep me awake. Funny thing though, even when it seems to be keeping me awake at night, I don't feel too bad in the morning. It seems to have a relaxing effect on me.

If you are afraid, why not start with a very small dose? The whole idea is to take a dose that clears your system quickly. There is no reason that you couldn't start at .1 mg and see how it goes. You can always work your way up from there.

I skip a dose every now and then if I am feeling the need. So far, I am glad I started, and plan to continue for a while. I will eventually up the dosage, but only when I am completely comfortable with the dose I am taking.

You will never know unless you try.

John

 

[leaves]

Be very careful with LDN there are several people that have gone (permanently) worse because of it. Including ( I suspect) myself. There is a long LDN thread somewhere I'd check that if I were you.

 

[justy]

Hi Soxfan, sorry i dont know much about this drug. Just wondering if you are so worried if you reallyneed to take it? what has it been prescribed for and also what do you hope to achieve with it?. As i said earlier, for me i am trying to get my brain chemistry to settle back to normal, so i dont take anything that interferes with my bodies ability to heal itself.

 

[caledonia]

I'm very sensitive to things too, and have my share of bad reactions. A wonderful skill I have learned in the past year is self muscle testing. You can easily determine if the medicine/supplement is right for you to take, and also what dose to take. So useful. You can learn it from videos on YouTube. You will need a sample of it to hold in your hand to test.

 

[floydguy]

I've started LDN. So far I think it helps. And I don't say that about anything. One thing to be aware of is that I am highly tolerant of most medications. The only medications I can't take are sleep ones like Lunesta, Ambien, etc.

 

[Sushi]

Hi Soxfan,

Both I and my friend have been taking it for 14 months with excellent results--stamina, immune system etc. My friend was bedbound, now he can drive and go to the gym etc. There is another LDN thread where we posted before and after pix of him: http://www.forums.aboutmecfs.org/showthread.php?379-Low-dose-Naltrexone&p=70701&viewfull=1#post70701

Some docs are saying it is the most helpful drug overall for CFS--but only about half those who try it tolerate it. Try a really low dose--like .25 mg--it won't be a therapeutic dose but should let you know if it is a drug you react to. Also, the unpleasant effects people experience are usually very transient. It isn't a cognitive drug in the sense that all it does is block your opiod receptors for about 6 hours. Then your body is tricked into producing more endorphins.

I wish you luck...and courage! It might not work, but could also be a winner.

Sushi

 

[soxfan]

Thanks to everyone for your thoughts. I am actually going to try it tonight. My husband has promised he will make me a tiny dose so hopefully I will be okay. The doctor has prescribed it to settle down my immune system. I am not totally sure what he means by that...I think maybe because my chronic exhaustion is caused by a hyper immune system. Like I said he had wanted me to try it last year but I was so burned out from 30 months of Lyme treatment I just couldn't do it at the time.
He is also recommending I start some NT supplements...one is Transfer Factor STP and Transfer Factor Multi-Immnue. I will wait on those for a while as I adjust to the LDN.

Thanks Sushi for the link..you post is encouraging! I can do this......

 

[alice1]

Hi soxfan,I adjust my doses because like most of us I'm very sensitive to meds.I've gone as high as 4mg but right now I'm down to .25.
Whatever my body can handle is the amount I'll take and personally I find it helpful.
Good luck and like everyone before me has said start as low as you feel comfortable with and work up.Low and slow.

 

[Marg]

Do not be afraid, start low and go slowly. I Had the first batch all made into 1.5. I have been on it over a year and slowly worked up to 4.5. I had a little trouble sleeping for a week or so and I had great dreams. It is helping with the pain and my sleep is better now. Skip at the pharmacy siad that if I had not been taking it my natural killer cells would have been way less than the 25 they were. This is a great product!

I am not very tolerant of any medications but no trouble with this one!

 

[drex13]

There is alot of debate as to what time of day LDN should be taken. Some argue it must be taken at bedtime, others say it doesn't matter. Dr. Ian Zagon of Penn State University is the leading researcher on LDN, and according to him, it doesn't matter when you take it, it will still have the same immunomodulatory effect. He also says that taking it in the a.m. or afternoon might stop the sleep disturbances it can sometimes cause.

 

[Cloud]

Kim....You are right to be concerned and wanting feedback on this because we tend to have either great or horrible reactions to LDN.....I don't hear too many pwc's describe LDN as benign. I am one who has had horrible reactions every time I try the stuff, regardless of dose. The first time was about 12 years ago, and the last time earlier this year....both were bad. Nothing makes me as sick as fast LDN...I can't imagine getting the standard dose that's used as a narcotic antagonist....if I were a junkie, I would need to wear a medic alert bracelet for Naltrexone.

Like you, I have horrible reactions to anti-depressants....but lightweight compared to LDN. The people I know like me who reacted really bad to LDN and yet still pressed on (trying to get through an early tough period), just ended up in progressively worse condition, and had a hard time coming back. But obviously not everyone does that.

So are you one who may react badly but can get through it by titrating to tolerance and hanging on until the worst is over (if that even happens)....or are you like me and will not get through it and only get worse by trying? My opinion......in light of all the success stories, it's worth a try. Like everyone says, go low and slow. And if it seems that you are only continuing to get worse day after day in spite of very small doses, then you may need to consider stopping. But I think it's worth a try.

 

[soxfan]

Thanks everyone for your thoughts..it has been very helpful. My husband made me 0.5 mg the other night and I just couldn't take it. I am not sure what my problem is. I have had a couple really bad reactions just this year (and in the past) from medications that act on the brain and I thought I was going to die. Celexa was one of them and I spent 10 miserable days on 1/4 pill and it took me another 10 days to get off.
I am not really sure how it will help me in terms of my symptoms...I think that is my main concern. I also have had 6 years of horrible sleep and with the help of lunesta I am able to sleep mostly through the night but it took a long time to get here and I don't want to mess that up. I work part time and really can't have my nights disturbed.

I am curious about taking it during the day instead. Has anyone taken it then? That could be a good option for me even though the doctor told me to take it at night..I am sorry in that I don't want to make a big deal out of this..I know other's are going through worse things than me just being a big baby...I will let you all know when and if I get the courage to try it.

Kim

 

[TheMoonIsBlue]

Hi Soxfan, if you have any sleep problems I would highly recommend not taking it before bed like a lot of places recommend. I could not sleep......even on the low dose of 1mg. I felt drugged, sick, awful, and wanted to sleep more than anything-but my brain just couldn't get to sleep even with medication. If you work part time I also would not take it before or during work, maybe when you get home from work. Some people have no reactions to LDN, some good, but some awful. I reacted terribly. I stuck it out for 3 months. It could be that those that react terrible have 1. Viruses/Bacteria reacting to LDN 2. Majorly upregulated immune systems 3. Our bodies have the endorphin "block" by LDN, but because of our messed up immune systems we never get the endorphin increase that is supposed to happen after the medication wears off (that seems very likely). Not saying this to scare you.....but I know how bad it would be if you couldn't sleep and had to work.
They say to take it at night because they say endorphins are produced I believe between 11pm-2am............however with SO many of us with sleep patterns that are totally different (like I can only sleep during the day) I am guessing we produced endorphins at different times.
Watch out for depressive feelings or achey body type feelings.....could be a sign that the LDN is blocking your endorphins too much and your body isn't producing them after it wears off.

 

[Ocean]

Thanks everyone for your thoughts..it has been very helpful. My husband made me 0.5 mg the other night and I just couldn't take it. I am not sure what my problem is. I have had a couple really bad reactions just this year (and in the past) from medications that act on the brain and I thought I was going to die. Celexa was one of them and I spent 10 miserable days on 1/4 pill and it took me another 10 days to get off.
I am not really sure how it will help me in terms of my symptoms...I think that is my main concern. I also have had 6 years of horrible sleep and with the help of lunesta I am able to sleep mostly through the night but it took a long time to get here and I don't want to mess that up. I work part time and really can't have my nights disturbed.

I am curious about taking it during the day instead. Has anyone taken it then? That could be a good option for me even though the doctor told me to take it at night..I am sorry in that I don't want to make a big deal out of this..I know other's are going through worse things than me just being a big baby...I will let you all know when and if I get the courage to try it.

Kim

I wonder if you ever ended up trying this. I have a lot of similar concerns. I do not do well with meds that affect my brain.