Julie’s Low Dose Naltrexone Journal: Week One
Overall, I think I am feeling better during the day. I have not, however, had that feeling of being a person without MS that I experienced on day 1, but looking at the big picture, it seems that fatigue is diminishing and I am getting more milage out of my mornings before needing a nap.
Here are some things that I have observed over the past week:
- Lucid dreams: Man, they were not joking about this as a side effect. If I could bottle these dreams and put them on the big screen, I would no doubt have a huge following of cult movie fanatics. These are dreams unlike I have had before, in that they involve real people in situations that could almost happen, but are truly surreal - and honestly creepy. In one dream, I was in a restaurant in China, having a discussion with my tablemates (a Russian friend, my husband and my college roommate) when they all put their hands in their laps and looked away from me, which signified the end of the dream. In another dream, I was walking through completely deserted department stores in New York City, having to push my way through layers of pink and purple chiffon to keep going until I found the back door, where my mother-in-law was waiting to take me to Thanksgiving dinner in the car I owned in college. I notice that I dream about people I have thought about or spoken to that day.
- Exercise helps the effect: I have noticed that the days when I am able to walk on the treadmill for 30 minutes, I squeeze out a couple more hours of “good” before I start feeling tired, and have even coasted through the day without absolutely needing a nap (although I slide into evening a little worse for the wear). Without exercising, I feel good until about noon and am desperate to lay down by 2:00 in the afternoon. I wonder if it could be that the LDN keeps the endorphins produced by exercise circulating a little longer?
- Alcohol: One day, I spent most of the day feeling like I was on the verge of vomiting with terrible headache, which could not be fixed with ibuprofen. I couldn’t eat. The only thing that had changed was two sips of wine from my husband’s glass the night before (probably totaling a tablespoon and a half) that I had taken before I thought about it. Clearly a bad idea, although I know that some people do drink a little on LDN. I’m not going to be one of them, I can tell you. Naltrexone at its full strength is used to treat alcohol dependence - however, the mechanism of action is much less clear to me than for treatment of addiction to opioid-based drugs.
Other than that, I know that I am thinking more clearly in general. Interestingly, while overall fatigue has been reduced, by 9:00 pm I am almost begging to go to bed. Before starting LDN, it was almost the opposite - I felt terribly fatigued for the entire day, but would feel the heaviness of the exhaustion lifting in the evenings. On a last note, I did experience some increased spasticity and cramping in my lower calves and feet during days 3 and 4 that seems to have subsided now.
There you have it. I would love to hear from you - did anyone have similar experiences? I am also particularly interested in hearing from those of you who took LDN while also on Copaxone (as I am doing), as the question has been raised of a possible decrease in effectiveness. Tune in next week…
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I started on LDN Jan 1st this year – 2ml per day.
I went thru the weird dreams for 4/5 days but since then things have improved slowly.
1 – I start up better in the mornings
2 – My balance has improved a little
3 – My strength has increased a little
4 – My mental approach has inproved
5 – I can walk further but still not that far
6 – Fecal urgencies have all but disappeared
7 – Paraesthesia is far less than it was
Overall these little things have made a big difference.
I appreciate your willingness to try this and report on it. Sharing personal information requires courage, and I commend you for it. I take Rebif. I have few symptoms now, with balance problems being the most prominent. I asked my Neuro about LDN just because I wondered if it would be a lower cost treatment. He made it clear that he does not prescribe it for MS. I guess the old saying applies to my situation: “If it ain’t broke, don’t fix it.”
Thank you so ,uch for doing this – I’m not on any therapies since they came out after my second son was born – haven’t had a major exacerbation since then – he’s 17 now. But the fatigue can be awful. I am very intrigued – I have not read f any serious side effects. I also like that you’re reporting this as a true journalist, not getting caught up in the hype and hope but stating the facts of how you are feeling.
Again, thank.
sharon
Julie, thanks so much for sharing these experiences with us. I’m newly diagnosed at age 54 and one month on Copaxone, so I’m really interested in learning all I can. Your blog has been such a help to me and many others. Best of luck with the LDN.
Although I do not have MS, I have been on LDN for Crohn’s for a month now and am keeping a similar journal on the wearecrohns.org web site –
http://wearecrohns.org/bobthomson70/journals
Kind Regards,
-Bob T.
Hi! I’m especially interested in what you experienced as different between provigil and ldn. I was dx’d 2002 and started and stopped copaxone (cuz of denial and hate of needles?) several times until last relapse (of double vision) back in 2006. During that time I got a as-needed prescription for provigil and until my newest MS specialist I had only taken it on days when the fatigue was ordering me to stay still. The new MS specialist about 6 months ago ecouraged me to try it daily and see how it works. I did so and for about 3 months it was amazing and felt like my life back (low dose provigil: 50mg per day in morning).
Anyway, the provigil had its issues and when I attributed it to screaming non-sensically at my kids I decided to stop it.
Now I am back to overwhelming fatigue – and came across your article today and sounds great! I am visiting with the specialist in a couple wks and will bring up your articles.
Thank you for playing guinea pig
I will keep up reading your blogs.
sounds good!
I was prescribed Adderall a while back, for the purpose of kick-starting anti-depressant SSRI’s which just weren’t doing the job of helping me with deep depression. The Adderall worked and the depression started to lift. What I wasn’t expecting is that the Adderall, which is a stimulant used to treat ADD, has had the effect of pretty much erasing my MS fatigue. It’s amazing. Just thought I’d mention it here.
I was formally diagnosed with MS early 2006, although my first episode was around 08/2001. I’ve been on rebif since 03/2007 and the MRIs are showing no new lesions.
I’ve been taking Vitamin D, Niacin and B-12. Like many others, I tire easily. When I mentioned this last year to my Neurologist at UCSF, he suggested the LDN. At first I didn’t notice any difference, but after a period of about 3-4 weeks I hopped on my stationary bike for the first time since my diagnosis. All of five minutes. Legs cramping and energy zapped. Over the next three months I was able to increase my time to 55 minutes and pushing my heart rate every 5 minutes. It seems to be working for me. My concentraion improved, as did the coordination
There was a period of about six weeks that I didn’t take any and I did notice my coordination was reverting back, the knee problem returned, and the difficulty concentrating did as well.
It wasn’t until this topic came up that I finally understood why the vivid dreams were happening. I restarted the LDN in March and am feeling better but now my sleep pattern has changed, waking between 2-3 am. Anyone else notice this?
I have been taking Adderall for MS fatigue for several years. I typically wake up around 4 AM and take the drug, then go back to sleep for 60-90 minutes, after which time I am able to “rise and shine.” I do pretty well until midafternoon. Then it is time for a nap!
Julie, thanks for your newsletter and blog. I find answers to most of my questions in the information and reference material you provide.
Thank you very much for sharing this information. I am on Tysabri now. LDN has always seemed like a safer more economical alternative. I just can’t find anyone to prescribe it! I am grateful for your insight on this and agree with your comment…we are the experts.
My 19-yr-old daughter was on LDN for 8 months. She had sever cramping in her legs , and also was uninterested in eating for the first month. But her energy increased visibly and fatigue was history. Most of all she loved swallowing a pill as opposed to giving herself shots! Unfortunately, her MS which was too aggressive for Copaxone was also too aggressive for LDN. After 8 months on LDN a MRI showed 15 new and active lesions. Her neuro put her on Tysabri (which she loves; he said that MS in young people is usually quite aggressive…slowing down later hopefully. He was not against LDN…just felt that it wasn’t doing the trick for her.
Our previous neuro “fired us” when we asked for the LDN.
The Swank diet and LDN have been a tremendous help to me. When I started on the LDN it relieved my nuerological pain, helped me sleep better, and gave me more energy. I don’t think it completely halted my disease but it has certainly slowed it down significantly. I’ve been on it for over a year now and still dream more than I used to although the dreams are not bad, just intense. I also noticed on the LDN I no longer need to get up at night to use the bathroom.
Thanks for writing about starting LDN. My wife just started to take it today 5/1 and we’ll see what happens. She has been taking avonex for 3 years now and it’s kept her MS in check but it kicks her butt for 24-36 hours every week.
You should join the Yahoo LDN discussion group which is owned by Dr. Gluck, a childhood friend of Dr. Bihari.
http://www.lowdosenaltrexone.org/
Dr. Julie – I was so excited to hear about LDN. Finally a med I could afford. I called one of the pharmacists and talked to him. I cannot take LDN – I was crushed. You see, I have MS, Fibromyalgia, Chronic Fatigue Immune Dysfunction, Arthritis, and some other syndrome I can’t think of right now. My pain level is normally at 7 on the pain scale, and I have been on Percocet and morphine for a couple years now. Doc and I have tried many different ways to treat the pain (tramadol, duragesic patches worked but irritated my skin, Cymbalta etc), most all have failed but with the morphine and percocet I can at least function! (No, I do not have any side effects, I don’t get stoned or woozy or anything like that. Kind of like taking aspirin but it works.) Had to go off Copaxone because of insurance and cannot afford those copays. But I gave my doctor all the research from your blog and the links and a copy of what the pharmacist said. We are going to try to maybe work around it with some other pain med I have not tried possibly, but my doctor says I am probably out of luck. Will keep trying though.
im taking baclofen for spactisity 10m four times a day. would that mix with naltrexone? the baclofen is working pretty well for that but over all feeling crappy so i would like to try this too
Julie: What’s new with your LDN trial?
Julie, I check every day for updates on your LDN. . .I thought there would be regular reports. . .please update us. Thank you!
Dear Alex, leglaw and others –
Sorry for the gaps in reports. I am going to post a big ol’ update on “Julie’s LDN Journal: Month One” tonight. I intentionally did not post the last week because I had a cold and it is getting much hotter and I wanted to separate the effects of the LDN from these things.
The sneak preview is that it is all good and I am thrilled with the results… but I will put all the details down for you in the next post.
Sorry for not keeping you updated on my reporting “strategy,” though…
More soon,
Julie
I had the same experience with respect to exercise. I’m taking LDN one year on now (4,5mg) and I exercise vigorously in the morning (running) and possibly in the evening (swimming). The difference has been huge. I exercise religiously every day now.
I would like to ask you if you have needed so far to go 1 day off on LDN every 10 days, in order to reduce the normal tollerance that would develop with time.
Thanks for sharing your experince.
Just started on LDN last week and so far so good. But would like to hear from anyone who is taking it for RA and how soon they got results and if they are still on any other RA mdications.
Thanks,
Janeen