LDN and dry mouth/dry eyes/muscle spasms

[Guest guest]

I just read this in today's digest....

" From: Lee

I have secondary Sjogrens, ie dry mouth and eyes. Well, I am not sure if if is

really Sjogrens as my ophthalmologist says, or whether it is just another

symptom of my RP. I have punctum plugs for the eye dryness.

My mouth is not as dry, thank goodness. I no longer have to chew gum to stop

coughing as my throat was so dry. "

.....and immediately thought AHA! Is my just-started (on Monday night) LDN the

cause of my sudden thirst for fluids at night? And why my eyes have been so dry

the last two mornings? I hadn't read about that side effect. What I did find was

this:

" Most common: disturbed sleep, occasionally with vivid, bizarre and disturbing

dreams, tiredness, fatigue, spasm and pain. These increased symptoms would not

normally be expected to last more than seven to ten days [but your experience

may vary]. "

As I wrote in my previous post, I have been suffering terribly since starting

LDN. I took it at 11:00 pm for the first time on Monday night (3 mg), went to

bed at midnight, tried to fall asleep but couldn't, then exactly 2 hours after

taking the LDN capsule I started having reactions - my doctor had told me that

LDN would start taking effect ~ two hours after I took it, and he was dead on.

My first symptom was that I became wide awake, the previous drowsiness was

totally gone. Then I became restless, tossing and turning, trying to find a

comfortable position, but things just got worse - my legs, particularly my

quads, began to cramp up, causing intense pain. At this point I was literally

churning my legs like I running in place, and I got tremendously hot and

thirsty. I drained the 16 oz water bottle I take to bed every night (sometimes I

get a little dehydrated and wake up thirsty, been doing this for as long as I

can remember).

At 3:00 am I was parched again, went to the kitchen to refill my water bottle

(and drained it), then I took one of those Relax-All sleep aid caps I previously

mentioned, one of it's primary components is magnesium, which helps reduce

muscle cramping. Didn't help. At 4:30 am I gave in and took the second herbal

sleep aid, Light's Out, which contains Tryptophan and Melatonin amongst some

other stuff. I eventually drifted off into some kind of quasi sleep state

(dreaming but still aware of my surroundings), finally gave up trying to get

some " real sleep " around 10:30 am and got up.

The same thing happened Tuesday night, I took my LDN at 11:00 pm, fell asleep on

the couch watching TV, woke up around midnight, went to bed, but couldn't go

back to sleep, and whammo, right at 1:00 am, it hit me again! Except this time

everything was twice as bad, the pain in my legs was EXCRUCIATING! It was so bad

I had to get out of bed at 3:00 am to stretch my legs and walk up and down the

hallway trying to get my muscles to loosen up - didn't work. I eventually dozed

for about an hour at most around 5:00 am (with a very bizarre recurring dream I

couldn't escape from), again gave up trying to fall asleep and got up totally

exhausted and brain dead around 11:00 am. Again, I drank 32 oz of water

overnight.

I saw my acupuncturist yesterday afternoon, and to say she wasn't too happy at

the state I was in would be an understatement - she wanted me to stop the LDN

immediately - I could barely even form a complete sentence when I got there. I

kept telling her that almost everyone goes through these problems when they

start taking LDN, and if I stopped I'd just have to go through it a second time

if/when I restarted - no thanks! She worked her magic, focusing on my kidneys

and various muscle spasms from head to toe that hurt like hell. By the time I

left her office I was semi-recovered but still extremely tired.

So tired that last night I took my LDN capsule at 11:00 am, immediately went to

bed, and fell asleep the second my head hit the pillow....until " Pumpkin Time " ,

of course....right on schedule, I woke up at exactly 1:00 am for the 3rd

consecutive night, again thirsty as hell. But this time the thrashing around/leg

pain was only half as bad as the 1st night, which was a HUGE improvement. I was

actually able to fall into a deep sleep around 4:30-5:00 am (after taking the

two sleep aids again), then woke up for real at 7:00 am, and I mean wide awake,

with my brain and body telling me " that's it, no dozing, you're getting up " . So

I did, and actually went out for breakfast! Also feel much better, not

surprising since I got four times the amount of sleep last night as I did in the

previous two days combined (4 hrs vs. 1 hr total between Mon-Tue nights).

But....this morning my eyes are unbelievably dry, I felt dehydrated (cotton

mouth not quenched by liquids) despite all the water I drank (again), and I've

been putting Dry Eye drops into each eye about every 15 minutes for the last 3

hours. Just noticed I haven't used the eye drops for almost 45 minutes now, and

after literally drinking almost a gallon of water since I got up and taking an

Electrolyte Stamina pill around 11:00 am I'm finally starting to feel

rehydrated.

So my questions to the group are:

1) How many of you experienced the dry eye/extreme thirst side effect when you

started taking LDN?

2) How many of you had horrible muscle cramps and/or tossed and turned like a

maniac trying to get into a comfortable position in bed without success?

3) For those who suffered from either item 1 or 2, how long did the side effects

last, meaning how many days after starting LDN did they go away?

Many thanks to all who respond.....the last 3 nights have driven me close to

insanity, especially Tuesday night.....I've been single since I got sick, really

have no one to share this stuff with except for a fellow Lymie who lives nearby,

but she has her own (much more serious) health problems to deal with, I'm not

about to dump all of this on her of all people....I almost had my first panic

attack in over 2 (3?) years Tuesday night....luckily I was able to " talk myself

down " using several techniques I've learned from my various therapists during

our regular PT sessions.....hoping based on last night's improvements that the

end of this nonsense is coming sooner rather than later....in any case, thanks

for listening!

P.S. For those looking for a compounding pharmacy and possessing a scrip or a

doctor willing to call one in, I got mine from the place listed below - only

cost $29 for a one month supply of 3 mg caps, including postage (they

snail-mailed them to me).

Cape Drugs, Cape Apothecary Inc

1384 Cape Saint Road

polis, MD 21409-5325

Phone:(410)-757-3522