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Ldn Low Dose Naltrexone


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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. :P

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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.

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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

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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 :)

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  • 2 weeks later...

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).

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  • 1 year later...

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!

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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.

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