roseannecl@gmail.com Posted November 28, 2009 Report Share Posted November 28, 2009 Hi Everyone ,I'm new here but have been reading this forum for ages and it's ace! have severe POTS, NMH and NCS and CFS. I have found no medication that I have been able to tolerate with the result that I've spend the last 9 years alternating between being housebound or completely bedbound. Lately I've been reading on some CFS forums that alot of people have found LDN has helped their stamina and fatigue. I'm very tempted to try it but given that I've had to be hospitalised with reactions to various POTS meds in the past I'm now very nervous of taking anything at all. Has anyone here tried LDN either for POTS , MS. Cancer, CFS or any other illness ? If so do you feel it helped and did it affect your POTS in anyway negative or positive? I'm very interested in hearing good or bad stories. If anyone has one I'd be very grateful. Quote Link to comment Share on other sites More sharing options...
dsdmom Posted November 28, 2009 Report Share Posted November 28, 2009 I am hoping to try this soon. I do know of someone else w/ dysautonomia who is taking it and has had pretty good results. She's only been on it for a matter of months at this point. I also have CFS/FM. Quote Link to comment Share on other sites More sharing options...
Lenna Posted November 28, 2009 Report Share Posted November 28, 2009 I had never heard of LDN before, but I just googled it. It sounds too good to be true! My son has not been diagnosed with CFS, but his POTS doctor has said that he suspects an autoimmune component to his POTS. I will definitely bring LDN up with the doctor at Dan's next appointment (end of Dec.). I'd love to hear more from anyone who knows more about this.Lenna Quote Link to comment Share on other sites More sharing options...
roseannecl@gmail.com Posted November 29, 2009 Author Report Share Posted November 29, 2009 I am hoping to try this soon. I do know of someone else w/ dysautonomia who is taking it and has had pretty good results. She's only been on it for a matter of months at this point. I also have CFS/FM.Thanks Dsdmon. That's good to hear. I haven't come across anyone with dysautonomia who has taken it so far. It's heartening that has helped one person and just as importantly that it hasn't adversely affected her! I'd give it a go in the morning if I felt at all confident that it would not make the POTS and associated dysautonomia symptoms worse as they are so disabling and sickening .It does sound too good to be true doesnt it Leanne? I know people who have tried it for MS and Rheumatoid Arthritis and found it wonderful though. I suppose we're all looking for miracles here Quote Link to comment Share on other sites More sharing options...
beggiatoa Posted November 29, 2009 Report Share Posted November 29, 2009 It's on my list of things to try. I have some her that I ordered from India. Just waiting to get around to it, I guess. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted November 29, 2009 Report Share Posted November 29, 2009 I was considering it as an option for another autoimmune illness I have that is causing me trouble. Sounds very interesting. Quote Link to comment Share on other sites More sharing options...
BelieverEM Posted December 10, 2009 Report Share Posted December 10, 2009 I was on it for about 8 months, prescribed by an integrational MD (combines the best of holistic & traditional medicine). I had no adverse reactions at all, and only went off it because of insurance. Definitely worth a try. Preliminary follow-up had suggested that it was boosting my immune system. A pharmacy in Waltham MA (near me) made it. Contact me if you want more info (probably more reliable than from overseas). Quote Link to comment Share on other sites More sharing options...
Lenna Posted December 10, 2009 Report Share Posted December 10, 2009 Hi BelieverEM. I've sent you a private message looking for more info. Thanks.Lenna Quote Link to comment Share on other sites More sharing options...
heathcliff Posted September 4, 2011 Report Share Posted September 4, 2011 i'm considering trying LDN (low dose naltrexone) for ulcerative colitis, and can't see why it wouldn't help with POTS. has anyone else tried it here? this thread is a bit old, and i'm wanting to spark it back to life, since LDN has had so much promise for other illnesses involving inflammation of the CNS. thanks! Quote Link to comment Share on other sites More sharing options...
songcanary Posted September 4, 2011 Report Share Posted September 4, 2011 I just started this a little over three weeks ago and it is AWESOME. It was prescribed by my fibro doctor. Cymbalta made me nauseous and Fibrocare caused nausea and bloodshot eyes. I put off starting it for six months because I was afraid of side effects. The day after my first dose I felt jittery and I thought Oh no here we go again. But the second day I felt fine and every day since I have felt fine. My lightheadedness is all but gone and my energy and pain levels have greatly improved, even in this short time. I am thrilled with this med! Even though it wasn't prescribed for dysautonomia, it is making me feel better over all, and at this point you couldn't pry it out of my hands. Quote Link to comment Share on other sites More sharing options...
Lenna Posted September 5, 2011 Report Share Posted September 5, 2011 My son did NOT do well with LDN. I think if your POTS is autoimmune-based, you might find it helpful. Otherwise, you may not.On a personal note having nothing to do with POTS, I'd love to hear if it helps your ulcerative colitis! Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted May 13 Report Share Posted May 13 I thought I would bump this topic, as it has some good responses from a few years ago. Is anyone currently on LDN? Or have you tried it and discontinued it? Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted May 13 Report Share Posted May 13 Tried varied doses for years. I didn’t get improvement from it then. I had high hopes for it! It did make it harder for me to sleep, though. Quote Link to comment Share on other sites More sharing options...
Jyoti Posted May 13 Report Share Posted May 13 Same as @RecipeForDisaster. I've tried the gamut of dosages, tried compounding pharmacies to exclude problems with fillers and still....nothing. I did not have trouble with sleep on it--just.....nothing. Quote Link to comment Share on other sites More sharing options...
MikeO Posted May 13 Report Share Posted May 13 My Daughter tried a LDN (custom compounded) didn't do anything for her. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted May 13 Report Share Posted May 13 Ugh, I hate to take something for which there is so little evidence, but my rheumatologist said it was reasonable to try. I seem to be sending a lot of money to compounding pharmacies these days. (Have a skin condition that requires compounded ointments.) I hope the LDN or hydroxychloroquine work for me on the auto-immune/auto-inflammatory side. I can’t take either while in my testing washout period so I am just sitting around, twiddling my thumbs. Quote Link to comment Share on other sites More sharing options...
RecipeForDisaster Posted May 13 Report Share Posted May 13 I don’t think you have much to lose - it’s pretty benign and not that expensive. I have read about people who had great results. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted May 14 Report Share Posted May 14 @RecipeForDisaster, fingers crossed! Quote Link to comment Share on other sites More sharing options...
little_blue_jay Posted July 24 Report Share Posted July 24 Did you try it and did it help you? Quote Link to comment Share on other sites More sharing options...
bevC Posted July 24 Report Share Posted July 24 On 5/13/2024 at 3:26 AM, Sarah Tee said: I thought I would bump this topic, as it has some good responses from a few years ago. Is anyone currently on LDN? Or have you tried it and discontinued it? I use it. Started with 1mg and now am parked at 4mg. Along with the NLP ANSrewire I have found significant improvement in my dysautonomia and ME/CFS. Went from about 35% functional to 79% in four months. Quote Link to comment Share on other sites More sharing options...
MTRJ75 Posted July 26 Report Share Posted July 26 I can’t exactly say what LDN helped but I’ve been more functional and able to get out of the house more often since starting it about 2 years ago, although I’ve struggled to find the right dosage and can’t say its solved all my problems. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted August 28 Report Share Posted August 28 I’ve finally managed to start LDN! Starting with 1mg, taken at night, working up to a possible 5mg. I’m hoping it will help with the autoimmune side of things. I have also restarted hydroxychloroquine (HCQ). I had been on that previously for three months, and it unexpectedly fixed wrist pain that I’ve had for 20 years and was told (wrongly) was age related, even tho it started a bit young. Am hoping now I am taking it again long term it will also do something for my OI problems. Finally I have added n-acetyl cysteine (NAC), a supplement. It’s also supposed to help with autoimmune and inflammatory stuff. According to an article I found, the LDN will take about three months to make a difference if it is going to. The HCQ, up to six months to know for sure. And the NAC, unsure, but quicker than the other two. Alphabet soup 🙂 Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted August 30 Report Share Posted August 30 Unfortunately, I’ve had some nausea, quite a common side effect. I tried 1mg at bedtime, and had nausea from waking up the next day until about 6pm. So the last night I halved the dose, but have had about the same level of nausea today. According to various forum posts, the nausea usually passes. I think I’ll have a night off, then try for 0.25mg. New skill learnt: splitting capsules. Quote Link to comment Share on other sites More sharing options...
Pistol Posted August 30 Report Share Posted August 30 @Sarah Tee Just a little tidbit of my experience: Having tried many medications over the years with varying results and side effects, I have learned the best way to evaluate the effectiveness of a med ( also advised by my specialist ) is to start at the lowest dose, even sometimes cutting it in half, and then gradually increase dose to tolerance. Plus - especially if side effects are expected to be temporary I stay the course - the body just needs time to adjust to new medications. Unless it was severe side effects ( like I experienced once with Clonidine and stopped the med after 5 days ) in most cases the unpleasant effects went away and I could increase dosages Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted August 30 Report Share Posted August 30 @Pistol, you always have the best advice. I fear that my cognitive problems often lead me to do things that I wonder at afterwards, like not starting medications at a lower dose when possible. It’s like one part of my brain knows that is the best plan of action, but another part reads the instructions on the pill bottle and swallows down the starting dose the doctor has written. My dad usually provides a good sounding board, but he’s still struggling with his pinched nerve and not able to keep an eye on me at the moment. I never do anything dangerous, just regrettable. And, ironically, if a friend had asked me about starting new medications, I would have been able to give them similar advice to yours. I just can’t seem to get it connected in my own head. I suppose this is executive dysfunction. Quote Link to comment Share on other sites More sharing options...
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