It's scary. We really don't know what side effects we might have from any drug ( or not) unless we try it. It might be the best thing for us or it could be the worst. We're all on a trial and error basis with any drug we take,huh That's one of the things I hate the most about MS! I know LDN is better tolerated than most other options though I guess.

That's a shame, Stacy. I have never heard of LDN raising one's BP, but I don't blame you for being extra careful.

I know that here are some side effecs at the higher doses of Naltrexone, such as liver problems but not at the low doses we take for MS. Insomnia only happened to me, temporarily, when I went up to 4.5mg, too fast.

Talk to your Doc/Neuro about it and see what he/she says. I hope you can still give it a try.

I started at 3.0mg and the side effects were not really bad. I had nausea (until I started downing a glass of water with it, which you should do when you are starting out anyway). I also had a mild headache for a few weeks, not much sleep for several days (but I still felt good during the day), and a "buzz" for about 30 min after I took it. I think that was it.

Cherie,

I have had past drugs that didn't allow me sleep and made me manic. I'm now afraid of LDN for that reason and my bp and having two past mini-strokes because of my bp which started after the MS dx. I was put on bp medication at age 32.

BTW, I was told by my psychiatrist that people with MS are twice as likely to become bipolar than the general population.

Thanks for the information and for caring.

Stac

My neuro, who is the head of the MS Clinic in Pittsburgh, told me my first visit LDN works for people with MS.

Speaking to his nurse the other day, I brought up getting a prescription of LDN. She said he won't prescribe it (for he works for a NMSS's MS Clinic who doesn't back LDN) but he doesn't care if you take LDN.

I understand your concerns, Stacy.

Admittedly, many people report some difficulty sleeping in the early days of starting on LDN, BUT for some reason that doesn't seem to mess us up.

I am not bipolar, but I needed a TON of sleep pre-LDN. There were many days that I slept for 20 out of 24 hours, until I got on it. Most days now, I survive and prosper on much less sleep than I ever got for years prior to going on this drug.

The first night I only slept about 3 hours, but I felt GREAT the next day. I hadn't felt "GREAT" in years, no matter how much I slept!!

One good thing about LDN, for anyone to know who might want to try it, is that it goes out of your system in about 18 hours. Hence, any side-effect someone might get from using it (and they are usually VERY mild) . . . by the day after stopping, all is back to "normal".

BTW, if the rate of bipolar is 1%, that still means only 2% (twice as many) of PwMS get it. I've heard the same thing; double.

Cherie

Thanks Cherie! I will go ahead and give it a try...cannot hurt

Again, Thanks!