Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group First night on LDN

Was so excited when my LDN finally came last week but kept it together until huby was no longer on night shift before I started it. I was a little worried about having night terrors on LDN because I already have very vivid dreams and nightmares. TBH I was a little worried about what I might do if I was having a night terror if I was home alone with the kids.

So waited and waited until I felt I was ready for sleep last night, turns out that was arround midnight grrr. Then I took my first capsule. Only starting on 1.5mg.

Well I had a few vivid dreams but nothing out of the ordinary for me. But my oh my was my sleep erratic. More so than normal. I lost count of the number of times I woke up during the night. Not sure if this was caused by the LDN its self or just because I was nervous with starting a new med.

I am not expecting to start seeing any improvements for a few weeks but heres to hoping. Fingers crossed my sleep improves as I get less nervous and my body gets used to the LDN.

Sue how are you going on the LDN?

Trish
xxx

YAY aussiegirl!!!!! i started at 1.5mg too. i posted about it in pharm if you wanna look. some folks do have sleep disturbance but as far as i know it usually doesnt last. one guy said it lasted a month and then was fine. others have said a few days or even a few weeks. i have not had that at all. actually sleep better lol. i have had more dreams but no terrors. if you want vivid, technicolor, and possibly terrors.. take your iodine suppliment late in the day!!! when i took it for a ttime a while ago i learned to take it in the morning lol.

Thanks sunny,
Had a read of your thread. Lots of good info there. The only other med I take is the "pill" and thats first thing in the morning so the two shouldnt interact. Felling a little upset in the tummy but not sure if that is from smoking so much yesterday. I know bad me. I have read LDN is meant to also help many women give up smoking so I have my fingers crossed for that also. Even with no other positeve effects I would settle for giving up smoking.

Look forward to following your experience on LDN.
Take care
Trish
xxx

and i yours i did an update in 'my NSD journey' in diet forum. thats were ill post future updates as well. I smoke too that be great to stop.. i do wanna stop.
excited to hear how it goes w/ you keep us posted!

hi trish,

glad you got to start the LDN!

do let us know how you progress.

i've been on it almost a year now.

as i've mentioned before, never any side effects i could detect on it. but others do report some sleep / dream issues, so hard to say if its the LDN or as you said, maybe being a bit nervous about it? but even if its the LDN, something that is supposed to subside from what i read.

how am i doing on it? well, as i've stated before, it does help tendon inflammation heal faster. but i hadn't been through a significant flare since i got over last falls, so didn't know if it was preventing them or minimizing them or if i just hadn't had a bad one yet.

well, 2 weeks ago i started feeling really bad. first with mouth sores, then the calf cramps, eyes and joints and bowels and hot flashes, and just feeling really awful. so i can say it doesn't prevent flares. however, after 2 weeks, i think the worst is behind me, think it did help my body recover faster from the flare. not sure it minimized the symptoms, as i was pretty much a mess for those two weeks. and i messed up my upper back / neck bad enough that i was so worried we'd have a repeat of last year, but it is a lot better after only a week. i could be wrong, but based on my experiences over the last 12 years, i do think the LDN is what is allowing my body to recover exceedingly fast as compared to before the LDN.

just would like something to prevent the flares and inflammation in the first place. have that for my SI joint (the flector patch). now if only i could find something like that for the rest of me!

I woke up a lot during the first night, as if I were in a major flare -- but unlike sleeplessness due to a flare, did not wake up feeling lousy in the morning. It's been over 2 weeks now and I'm still not sleeping like a log like normal, but a lot better than the first couple nights.

thanks Sue. From memory you said in that thread you may try a higher dose to try and prevent the flares. Good luck if you do go that way and please let us know if it helps.

take care
Trish
xx

Hi SJLC
Good to hear your sleep is improving even if not back to normal yet. Fingers crossed it will.

I don't know if it is from the restless night I had or having to spend the whole day with my Brother and now ex sister in law to be, sorting out their breakup, but right now I feel like I was hit by a mack truck. I think maybe a combination of both but I feel like I could sleep for a year.

Going to have a hot shower and try and stay up to take the LDN after 9pm (its 5:57pm now) I hope 9pm is not too soon as last night it was almost midnight when I took it.

Where is the main place everyone is posting their updates? Would be great to follow and share our experience.

Trish
xxx

LOL! i love when others remember what i said better than i remember! now that you say that, yes, i do remember saying that.

i have thought about it, but thought i'd give the experiment a little time.

plus have been thinking about going to a doctor in town who regularly prescribes LDN, who i think would be more open to experimenting with dosages; only catch is she doesn't take insurance so each visit would be rather pricey, still thinking about it though.

it was such a chore getting my rheumy to say yes to the LDN, don't want to give him any reason to say no. and when he didn't even want to hear how i was doing on it, well, decided to just ask him to renew it rather than discuss it.

Today is day 6 for me and I feel freakishly good. I have had one alarming short dream each night about 5 hours after I take the pill, well the first night I stayed awake the whole night... but since then it's A OK! I don't know if it's the LDN or not, but I felt and immediate change in mobility the next day. The cymbalta had already taken away upwards of 80% of my pain, but the range of movement this week is amazing. I'm still on 1.5mg for another week ~ my doc want me to go up by 1.5mg every two weeks instead of every week. Tonight I went to my very first dinner party out with friends in two years, and now I'm a bit crampy in the upper back, but nothing gruesome. Good luck to you!