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Crohn's Disease Forum » Treatment » Low Dose Naltrexone » LDN - No vivid dreams?


01-04-2013, 11:08 AM   #1
sarahcaitlin
 
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LDN - No vivid dreams?

So I started LDN two nights ago. Last night, I took my second dose. My GI wouldn't prescribe it to me (argh), and I reached out to a few other local doctors and didn't hear anything back except an appointment request for two months from now. I wanted to go ahead and start the treatment, so I got the LDN myself and followed online instructions to mix it in the fridge. I took 4.5ml both nights.

The first night, I got a serious head-rush in bed. It was weird, but only lasted about 10 minutes then I fell asleep. Last night, nothing. Both nights, I haven't had any vivid dreams at all; and I was expecting them. I had dreams, kind of, but I always do.

I haven't taken Humira in about 3 1/2 weeks now. I was sick of it and had been on it for 8 years. My health has gotten better, for the most part, but I think mostly thanks to lifestyle and natural changes.

My worry is that making the LDN myself somehow isn't as good, or because I'm not having the vivid dreams it means it's not working, or I'm not doing something right. Any ideas?
01-04-2013, 11:14 AM   #2
Clash
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I don't think everyone has the side effect of vivid dreams but I'm going to tag jmrogers and ctrlz, they probably can give more information. Hope all goes well for you!!
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C age 19
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Dx May 2014: JSpA
8/2014 ileocecectomy
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PAST MEDS: remicade, oral mtx, humira
01-04-2013, 11:23 AM   #3
Jmrogers4
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No vivid dreams here. We were expecting them but nothing. Jack did have a headache the following day but has not had one since but then he just got home from a week of camp and so headache could have been from something else as well.
Not sure about mixing yourself or the liquid form, we get ours from a compounding pharmacy. I'm tagging Kev as well as he has been on it the longest
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Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
01-04-2013, 11:30 AM   #4
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I had a couple, but they went away pretty quickly. Nothing memorable as of late. I wouldn't worry too much about it. Keep us posted on how you're doing!
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Hi, I'm Jesse!

Current meds:
Lialda (4.8g)
fluoxetine (40mg)
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Previous meds:
Dexilant (too pricey!), Xifaxan (short course), budesonide (tapered off), Pentasa (had to switch in January 2016), omeprazole

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gastritis & duodenal ulcers, August 2011
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01-04-2013, 11:36 AM   #5
sarahcaitlin
 
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Thank you guys! I'm gonna send myself into a flare-up stressing about my lack of side effects! (kidding)
01-04-2013, 11:44 AM   #6
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Quick question for you Sarah: Did Humira start losing it's efficacy at some point? Or were you just tired of taking it?
01-04-2013, 11:55 AM   #7
sarahcaitlin
 
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Kind of a combo. I've been on it for a long time. Through that time, I've been really sick, I've been better, and all the while the Humira has been constant. What did change, though, was my diet, exercise, and a lot of supplements and natural treatment: with those I saw definite cause and effect, and my basic Crohn's symptoms started improving. I had diarrhea and loose bm's every time I used the bathroom on Humira, even when I felt better otherwise. I started having formed BM's ONLY when I started the natural adjustments. I just feel like it's time to move on from Humira. Plus, I got shingles about 5 months ago and it was awful, and now the main thing I deal with are abscesses that hurt, some of them perianal. Humira is making all of those things worse. I'm just starting to not understand the idea of forcing my body to be weaker in order to fix this disease. It might mask symptoms or fix things temporarily but I have a feeling it will continue to cause the rest of my body to go haywire as long as I'm on it.

That was what drew me to trying LDN.
01-04-2013, 12:00 PM   #8
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Totally understandable. I was concerned initially because of the timing of stopping Humira with the development of abscesses, but it sounds like you've thought this through quite a bit. I will say that LDN takes a while to "kick in" for most people, so give it time if you can. What natural changes have you made?
01-04-2013, 12:05 PM   #9
sarahcaitlin
 
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Yeah, the abscesses have been there for months. They did get worse this past week, and maybe that is because I haven't taken Humira, but I don't know. Gotta try something new!

I've gone mostly gluten-free, quit smoking, whole food multi, acupuncture, yoga, heavy duty probiotics (right now on VSL3 but I cycle through a few different brands), when I'm feeling sick I drink a combo of DMSO and colloidal silver and also use it topically (per the protocols at listentoyourgut.com), and also use oil of oregano when I'm feeling sick with the heavy duty probiotics. I attribute most of my improvement to yoga and the probiotics!
01-04-2013, 02:25 PM   #10
mnsun
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Yeah, I had probably two episodic, out-there dreams the first week. Since then, not so much until I started taking some quick melt melatonin after nightly LDN. Pretty cool. Although, I imagine my body would adjust to the melatonin if I kept taking it steadily. I just happened to get a 10 pill sample that was sitting around.

Melatonin MIGHT potentiate the effects of LDN, because although I haven't had dreams every night, on the ones I don't, I wake up around 5 am which I can only attribute to the endorphin bounce. Really it's way to early to tell, but nearly every night I've taken melatonin (4 days) I wake up briefly. Pretty crazy.

On the supplement situation, I consider myself rather outgoing, but DMSO is something I've stayed away from because of the hyper sanitary conditions (and sources it is produced from) needed to take it safely (or so I've been lead to believe). What symptoms do you attribute DMSO effecting?
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01-05-2013, 10:53 AM   #11
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Couple of thoughts.... First, those dreams weren't frequent, or dependable. I enjoyed them when they happened... but it wasn't every nite, or every other nite. Just now N then. And then they stopped completely. Kinda weird missing a side effect, but they were nice dreams (the word dream doesn't do it justice).

Other item.... smoking. Smoking is a killer... and studies indicate that in does block/slow the absorption of some drugs used to treat Crohns. But, there is another side to this issue. The old time treatment for ulceration or bleeding from IBD was... you guessed it.. smoking. Doctors would actually prescribe 6 - 8 cigarettes a day. And, it works. If you are bleeding a lot... or notice an increase in symptoms since you quit, it may be that it is due to quitting. Today, doctors are extremely adverse to talk about it, you really have to twist their arms before they'll admit it, and they don't know how it works (NRT doesn't work), but it does work. And, if you go to a professional stop smoking center, they will advise you to be cautious if you have any bleeding issues before considering quitting.
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01-05-2013, 04:51 PM   #12
enumeras
 
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Last night was my second dose of LDN and the second time I had the problems with dreaming. Whereas I expected lucid dreaming, my dreams have been quite different. For some reason, the boundary between sleep and waking life has been indistinguishable. Last night, I was asleep/awake and started yelling at my husband at 2am (I have NO IDEA what I said). I believe I had a dream about him coming to bed late and feeling him next to me in my waking life prompted me to start yelling at him. It was insane because though my eyes were open, my mind was still in a dream state -- completely unaware of reality. I just remember him yelling back at me in bed to calm down (in a caring, understanding way). That's when I became aware of my surroundings and realized he was lying next to me for quite some time. It's really disturbing but I remember I experienced this phenomenon about 10 years ago. I wonder if LDN is restarting this somehow..

Lucid dreams are a side effect -- not a necessary factor in the functioning of LDN.
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Dx:
Crohns Colitis (2000)
Perianal disease (2008)
Pyoderma Gangrenosum (2009)

Meds:
Imuran (2000 - current)
LDN therapy (started 1/3/2013)

Sx:
Sub-total colectomy ileo-rectal anastamosis (2007)

Last edited by enumeras; 01-05-2013 at 05:11 PM.
01-05-2013, 06:34 PM   #13
ctrl z
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enumeras: my first few weeks of LDN I experienced a couple nights of the weird half-sleep. I don't get that anymore. If I do, it is a rare occurrence.

I've experienced vivid, crazy dreams my whole life. I think the first couple weeks of LDN they were kicked up a notch or two but they've returned to their usual vivid weirdness.
02-06-2013, 04:25 PM   #14
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Hi Sarah, not sure if you're still on the forum with any frequency, but if so, how are you feeling and how is the LDN treating you?
02-06-2013, 08:39 PM   #15
sarahcaitlin
 
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Hi, all. I didn't post for a while after I started this thread for a couple of reasons. First, I ended up in the hospital after having a high fever for 2+ days--I had a few abscesses that had been getting progressively worse and was worried the fever was from them. They put me on high dose antibiotics and begged me, again, to get my colon completely removed. They did a colonoscopy and my GI said it actually didn't look as bad as the last time (8+ months ago), but my SED rate was reallllly high (like 71, I think). I had started LDN three days before all this, so obviously it hadn't had time to take effect. The abscesses had begun forming about two months ago, while taking Humira, which I'd been on for years.

Anyway. The abscesses and the hospital stay were, believe it or not, the push I needed to decide to STOP taking biologics, period. I can feel myself becoming weaker and weaker, aside from the Crohn's. I refused the colon removal because, aside from the recent incident, I generally get by fine, my quality of life is better than decent. I work, I exercise all the time, I have fun, I'm a mom; aside from getting shingles 5 months ago (ahem, Humira) and these absecces I just feel like I have mild Crohn's and strictures from scar tissue, which I've also had for years. They tried to get me to take my colon out when I turned 20. I'm 26 now.

All of this is to say that, almost a month later on the LDN, I'm feeling.... kind of great. After I got out of the hospital I visited my primary care doctor and asked him to prescribe it for me so I could get it from an actual pharmacy (I had been making it myself), and I also brought him such research I had read on Wellbutrin for it's anti-TNF properties and asked if he though it would be harmful for me to try it. He told me to give it a shot, so, I started the Wellbutrin the next day, and literally the day after I went from constant diarrhea from all of the antibiotics, feeling incredibly weak, to completely formed stools and feeling just, generally, better. And it hasn't changed since. I don't know if the Wellbutrin did it, or the LDN started to kick in, but I am so hopeful right now.

I think I will only take the Wellbutrin for a little while longer and wean myself off to see if the improvement is from the LDN. I don't intend to stay on Wellbutrin for the long-term, unless it is what's helping so much.

Thank you all so much for the support. Here's to hope!
02-06-2013, 09:18 PM   #16
Jmrogers4
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Glad you are feeling better
02-06-2013, 09:30 PM   #17
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Seconded! Here's hoping the trend continues! I'm sorry that you landed in the hospital, but I'm certainly happy that you are currently feeling better. Feel free to keep on updating, and let us know how the LDN treats you. :)
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