Hi Sally and Lady,

Thanks for your warm welcome!

I find the LDN seems to help me a little with energy, intitally it helped with pain too. But not enough energy support. I just upped the dose to 3mg last night and hopefully it will help more.

Thanks for the link Lady! I've been to the site and also read a book about it. It is the most hopeful stuff I've read about a med in a long, long time. :)

Do you find that you wake up at night from it? At some point in the night I wake up with a surge of energy in my body but my mind is really hazy. I fall back to sleep fortunatly. I try not to take it until right before I go to bed, hoping that the endorphin surge will occur closer to morning so I can benefit from it while awake.

-Hazzell

Hi, I had an odd episode today- I'm wondering if this could be connected to the LDN.

I was fine and then had stomach pain, nausea, lightheaded, hot and cold, weak and felt like I was going to pass out. I was at the dr office, fortuneately, so was able to lie down there for a while and with time and a litte food and water, started feeling well enough to get home.

I've had these episodes before but not for a while. I'm trying to sort out the many variables that may have contributed to this and am wondering if anyone has experienced a reaction like this as a ldn side-effect or as part of the adjustment process?

(A couple nights ago I increased from 1.5mg to 3mg)

Thanks,
Hazzell

It, most likely, wasn't the LDN, unless you are allergic to it. Probably a bug going around or lack of food, water, sleep etc.

Feel better..:hug:

I agree with Sally - probably a combination of low blood sugar and dehydration. Way back, before I found out (officially) that I had low blood sugar issues, I would have episodes like you described. I didn't get the stomach pains, but that would go along with hunger. You said you improved after a little food and drink. I usually have some nuts or a granola bar with me in case I'm going to be late for lunch/dinner. Low blood sugar can be affected by a lot of factors besides simply not eating.

I think LDN leaves your system pretty quickly, so any ill effects would probably have happenned sooner.

I hope you figure it out - those feelings can be scary!

C

I get that too with my low blood sugar, like you do Carol. I carry sugary sweets with me. Lol

Hazzell, I don't know if that is your problem, have you had your blood sugar checked? You also had a brain injury, so that could do weird things to your body too. You could lower your dosage back to 1.5 mg of LDN for a while and see how you feel.

I hope you feel better soon. It is so hard to tell what is caused by what. Meds or diseases. :eek:

Hiya, all. I’m just stopping by for an update. I am doing well, and we’re in Florida for a couple of weeks. We need to replace the flooring at the condo we inherited last July, and update some of the appliances. I am taking an artsy workshop at a wonderful art center down here. When I am on the road like this I sometimes forget to take my LDN, and I really can feel it the next day. I do stop by here (NeuroTalk) often to keep up with everybody’s goings-on.

Peace

Nice to hear from you Marion.:) Have a blast in Fla!:cool:

Glad things are back to normal (or whatever that is) for you, Marion. Have fun in Florida. Wish I were there, too. I'm tired of the snow and ice and I'm just up in GA!!

Hi,

Thanks you all for your help in sorting this out! I defintely have blood sugar problems- hypoglycemia. My blood sugar doesn't go up that much but it swings quite low and fast. So I'm mindful of this as well as my tendency towards low and dropping blood pressure and have something with me and am careful about my water intake. Although, I feel like I'm usually not drinking enough no matter how much I drink.

Blood sugar may have contributed in some way but I think in large part it was a problem with blood pressure dropping fast. I have a tendency towards this and I think the LDN combined with other meds that can have a blood-lowering effect plus getting up too quickly after an osteopathic manipulation, all resulted in the experience I had.

I lowered the LDN to 1.5mg and also went off of the other meds (sonata and ativan). I'm finding that it's really hard to sleep and the LDN seems to be making my sleep lighter and more fragmented. I can't take all the meds together because it creates too many blood pressure problems, fatigue and brain fog- even in the day. I'm very sensitive to side-effects.

Has anyone else experienced difficulty sleeping due the LDN and do you have any suggestions on what to do about it? (I also take Mag Citrate, 5-htp and do relaxation practices to help with sleep) Also, the benefits seem to only last a couple hours in the morning for me- is there a way to extend it?

I really need this medication to help me (and I think it is to some degree) but and am trying to figure out a way I can experience it's benefits without the difficulties. :)

I'm talking to my dr tomorrow and am hoping he'll have some ideas.

Have a good night and thanks again!
-Hazzell

Sooooo....

What did the Doc say?

Hi! My doctor and I decided that since the LDN is really disrupting my sleep and I don't need the LDN for immune strengthening purposes (I don't have MS- I have a brian injury caused by infection decades ago) that I'll try taking it during the day. We're hoping this will help.
Thanks for asking!
-Hazzell

I am trying to get back on LDN (keep taking only 1.5 mg now) since I had the CCSVI procedure (like surgery with no outside cutting) more like a colonoscopy type procedure.

Anyhow, getting back on LDN is fighting with my Coumidin (blood thinner). So I take it three hours before bed or I have sleep issues too --which I had stopped having two years ago after I got used to the LDN and that side effect.

Some people have this problem. Maybe other meds or their circadian clock is mixed up.

The fragmented sleep is a good description. :)

Hi Marion .. waving hello

Rut Roh! :)
 

I’ve lost my LDN doctor! I can’t find him anywhere. His name is Kevin Krembs, and he is from Indiana. His old number, and any other numbers I can come up with for him are no longer in service. Does anybody know where he went? The last time I refilled my Rx with Skip, Dr. Krembs gave me a refill that would cover me for a year, and he didn’t even charge me for the phone consult - or at least I don't remember seeing the charge on my credit card. He was always so very helpful. Dagnabit!

Perhaps it is time for another doctor. Does anyone have the updated LDN doctors’ list? I’d love to find someone here in Connecticut, but I don’t suppose it really matters.

Thanks in advance for your help.

He wasn't one of M. Jackson's Docs was he?:D

Dr Sullivan is in Penn., Is he close enough?

Ask Skipp, also. Good luck.:hug:

dreams less than dreamy. and is LDN working?
 

I have been on LDN for about 3 months, but at first was also taking 20 mg/night of amitriptyllne, which is sedating.

I'm working on getting off the amitriptyline, and am now down to 10 mg.

It's been about 2 weeks on the lower dose, and I've found that the vivid dreams that started when I started the LDN have become, well, more vivid and sort of tiring. They aren't nightmares, but hectic, fast-paced and do have some negative/disturbing elements.

Have people found that the dreams stay just as vivid over time? I'm on what I think is a relatively high dose - 4.5 mg - and am thinking of asking my dr. about going on lower dose to see if the dreams calm down.

It's hard for me to tell if the LDN itself is helping.

I already had found relief from fatigue from low-dose testosterone cream, and I'm on tysabri so i can't tell if the LDN has helped to contribute to my positive MRI results (no cervical or brain active or new lesions, though i still have to get thorassic MRI to see what's up there).

I am still having pseudoexacerbations and have persistent neuropathy in feet and legs.

any thoughts?

My doctor is in Rhode Island - he has a waiting list for new patients but if you are nearby, maybe you'd be interested - he is an MD and also a naturopath and I've had a very good experience with him.

I have a new 4.5mg script to fill and would like to try the mail order in south florida Skips? If that's the best place, someone please p.m. me phone # or alternative pharm.
Thanks
ed

Done, the PM was sent to you. :)

Me too...lol;)

Thanks Lady & Sally. Ordered 3 month supply of 4.5mg = $65 shipped. Done :)

Eddie, don't give up on it even if you have a few side effects like waking up in the middle of the night, colorful dreaming, or some minor other thing. These go away over time. It means it is working. Best of luck to you. :)

Thank you Lady & i'm actually looking forward to the dreams :)

I didn't sleep for ---- last night after taking it. Tomorrow i'm taking it during the day & see if it gives me energy.
ZZzzzzz....

Eddie, it messed with my sleep in the beginning, too. Especially when I upped my dose to 4.5 mg. I just toughed it out and after about a week it settled down into the pattern I'm still in. I napped alot during those days, too. Basically, I slept whenever I could. Now, I'm still up and down throughout the night but it's a schedule I can live with and I quite often nap during the day.

It doesn't work that way Ed. Go back to the LDN site and read the instructions.:)

um, how long will it take for these dreams to subside? they are so vivid they are tiring!

JD

I still have them. I've gotten used to them but at first they were a little tiring.

Eddie, Sally's right. Taking LDN during the day doesn't provide the benefits. If you can tough it out for a little while you'll be glad you did.

Thanks all but I exercise/workout way too hard during the day to feel like this. I'll try it during the day for kiicks anyway cause I know, I actually tell people at group when to take it.

My question's why not take a drug that increases endorphins? Tell me how it wouldn't be as good if a higher level of it is what does the majic. I'll ask dr tomorrow.

Eddie, I tried to get up to 4.5 mg of LDN, but never made it. I did 1.5 mg for ten days then when to 3.0 mg and have stayed there. Going up to 3.0 mg was a big adjustment for me, sleep wise and dream wise.

Our bodies are different and react to meds different. We make endorphins while we sleep. Example: If you were a night worker, you can take it in the day before you sleep during the day.

I don't know if it works the same, taking it during the day and sleeping at night???

Perhaps take it earlier in the evening and then go to bed? JMO

I'm thinking of going from 4.5 (which I started at, at new year's) to 3 - how will i know if it is working or not at the lower dose? I'm on Tysabri as well, so I don't know if I can really tell what the LDN is or isn't doing, though I think it has helped with fatigue.

I don't think that would hurt one bit RD. I was on 3mg for 3 yrs before I went up to 4.5. I don't have problems sleeping but I do still have the vivid dreams.:eek:

When you are on other modulating drugs, it's hard to tell when LDN kicks in. Go off of it for awhile and see if there is a diff???

Good luck to you.:hug:

I went off LDN to have my CCSVI procedure so I could take their IV pain medication during the procedure and have it work. :Zzzz:

Then I was on some new medication because my blood pressure was tipping over moderate. The BP medication made me dizzy. My BP was falling too low and too fast. I was on Warfarin for a while too.

I kept trying to get back on my LDN but had issues with it because of the meds. I hate medication unless it is a must. :)

I could tell I was off it. As soon as I stopped both the meds, I had no problem getting on the 1.5 mg and will go up soon to 3.0 mg again.

If you find LDN interferes with your other meds, then you have to make a choice. Probably stop the LDN and see how you feel. If it is new to you, then keep it up. Play with the dosage and/or timing.

I have no problem sleeping 9 hours in a row with no nap. The CCSVI procedure?-probably- or the LDN? The LDN takes away all my aches and pains. Which is great because pain meds don't work with LDN, or so they say.

I have taken pain meds with LDN and they work. I don't think we take that big a dosage to prevent a strong pain med from to working.

I just didn't want to find out the hard way. :eek:

So true Lady!

I spoke with Dr for a hr (nice guy) but forgot ldn & bone density test! I didn't try it yesterDAY because I got pneumonia vaccine & my daily workout's enough load. Maybe today. And when I slept very well the night after I didn't from ldn, I remembered my dream..still do. I'm on Ty as well for the one who asked about doing both. Ampyra too 1x/day. Testosterone too but who's counting :) Yes that combo's enough to keep you awake without exercising..but I do.

Quick question. Does anybody think it would cause a problem if I only took 3.0 mg as opposed to the 4.5 mg I have been taking?

I'm about to run out of 4.5 mg capsules but I have a pretty good supply of 1.5 mg capsules. The cost of the phone consult plus the prescription will put a strain on my budget right now. I'd like to take 2 of the 1.5 mg. capsules (total of 3 mg) until I can make a phone consult appointment to get my script refilled. I guess I could take 3 to keep my dosage consistent with what I take now but I wanted to make my supply last as long as I could.

Do you think it will be a mistake to lower my dosage? I'm already having sx issues (numbness) and don't want to make it worse.

To tell you the truth, I don't know. Call Skip and ask him...Maybe he'll even give you some free samples..:):hug:

Great idea.....I hadn't even thought of doing that. :) I'll post what he tells me.

Ready to lower my dose
 

Here's my update: I described my disturbing LDN dreams to my best friend, and she said "um, those are nightmares." and I had to admit, she was right...

Also my neuropathy has been worse, even though my MRIs are better, so I'm wondering if it could be contributing to that as well?

So I'm dropping my dose. Will go to 3 for a while and see how it goes...

I've only ever gone up to 3 mg. I started at 2 mg for a month and then went to 3. I had so much improvement in my heat intolerance (it was summer) that I just decided to stay there and keep a higher dose as an option if I feel like I need more. So far so good and I'm coming up on 2 years.

C

checking in
 

You may remember that I was unable to refill my LDN Rx back in early March because my doctor had disappeared. I was about to go on an extended ski trip out west with my hubby, and refilling the LDN just didn’t get done. I decided that I’d go on vacation without LDN. I figured it would be a good test to see if LDN was still helping me out with my MS symptoms. Well, you can consider the test a total success, since I now feel awful! I can’t wait to get back home and get hooked up with my LDN again. I am semi miserable. I can’t believe the fatigue! I can’t believe the pain level! I had forgotten how awful my life was without LDN!

I figure this experiment was in order. I had been on LDN for over three years, and sometimes drugs become less effective the longer you take them. Well you can consider me convinced. If it were not for LDN, I’d be in a power chair much if not most of the time. I am miserable, and if not for this experiment I’d still be wondering.

LDN rules!