insomnia

[Guest guest]

Wow Meg,

I know what that's like!

You've tried most things that I would recommend. Here are a couple

more that sometimes work for me-

a homeopathic by Boiron, tablets of Quietude and Sedalia. These are 2

different products, I take both at the same time.

Something else I do is take liquid extracts of various herbs - like

the ones you mentioned, put some in water and sip it about 1 hour

before I want to sleep. I take way more than the amount recommended on

the bottle.

I have the opposite problem than you. I fall asleep easily, then wake

up at 2:30 or so am. Then I can't get back to sleep. Too many worries.

So I get up and start my day. I'm so used to being tired I don't know

what it's like to not be.

Last idea - and I almost never recommend a pharmaceutical - for my

emergencies, when if I don't sleep I'm going to go crazy, I'm sure you

know the feeling, Xanax works like a charm for me.

I do this rarely (not more than 10-12 times a year, as they are very

addictive.) You need a prescription.

Also, check the archives, we have had some discussions on insomnia,

not sure if there will be something new there for you.

Good luck!

ellen

>

> Hi all,

>

> I seem to recall asking vaguely about this before, but eather I

don't remember what sugggestions were made, or I only *thought* about

asking. Probably the latter, knowing me.

>

> Anyway, I'm having *major* issues with insomnia lately -- I'm not

sure if it's just part of a typical Lyme flare, maybe related to

herxing, or if it's more the emotional stress I'm under right now (I

thought your siblings were supposed to be the good guys!). For the

last week or so now (it gets confusing, trying to figure out how many

night it's been) I've been unable to fall asleep at my regular time

(between 11:00 and 12:00). The first night, I couldn't sleep because

this cold I've got was making it hard to breath. After that the next

few nights it wasn't until after 4:00AM that I was able to fall asleep

(though the cold didn't seem to be a factor anymore), and last night I

didn't fall asleep until well after 6:00AM. I've tried all my " normal "

things, 5-HTP, theanine, valerian, magnesium, tea, melatonin (yes,

even though I'm also having issues with depression still -- I want to

go to SLEEP more than anything right now!), warm baths a bit before

bedtime, warm milk, " sleep "

> music, even my ambien that I reserve for " emergencies " . Heck, I

counted sheep, but they just kept coming and coming! NOTHING is

helping. Once I DO fall asleep I can't seem to stay sleep more 4 hours

(quite a change from a few months ago when I was routinely sleeping

18+ hour a day). Ever since I first got sick, I've been able to nap

during the day (obviously if I was sleeping 18 a day), no matter how

bright it was in a room, or how loud the house was. Now in utter quiet

and darkness, I can't nap, even though I feel completely exhausted.

The lack of sleep (at least I think it's the lack of sleep) is kind of

freaking my brain out I think, and I'm having more hallucinations and

seeing more floaters and stuff than normal too. Anyway, I want to

sleep! Does anybody have *any* recommendations for me, besides what

I've already tried? I'll try just about anything at this point.

>

> THanks!

>

> -Meg

>

[Guest guest]

Steve,

Sorry you've been having trouble too! It's got to be one of the more frustrating

things to deal with; pain, fatigue, all the other symptoms I've dealt with, they

all have their own frustrations, but not sleeping makes me feel like I'm seconds

away from some kind of a mental breakdown. Sound and light sensitivity have been

an issue for me since I first got sick too, and I think it's 10X worse when I'm

not sleeping enough (which is great when you have a very noisy, energetic niece

in your house for most of every day!). I'll probably try a low dose of

melatonin tonight (I think mine are 3 mg; maybe I can cut one in half). I *was*

trying to avoid melatonin, since I've been having issues with depression lately,

but at this point I think sleeping for more than a couple hours wins over the

possibility of more depression.

I unplugged my clock after the third night! It was driving me crazy looking at

it every 3 or 4 minutes for hours on end. I think I'll leave it that way

indefinitely, too.

I'll probably also give the music a try tonight; I've tried various types of

music in the past, but I usually went more for the really quiet relaxing types,

instead of something that would make me think. I guess it's kind of like the

classy version of counting sheep or something.

Hope you're troubles with insomnia resolve soon!

-Meg

steve <xanax006@...> wrote: Meg

I've been having the same problems with sleep. its' maddening. it

seems that you need to find just the

right dose with melatonin. sometimes 1mg works better than 3. in the

atkins book it mentions some

people can take up to 20mg. i think that's insane but try the less is

more technique.

maybe it works the way homeopathic meds do. i also keep a small battery

tape recorder

near my pillow and play music that tires me out. not loud or heavy

music - and not new agy

stuff. it's got to be something that you can study - like instrumental

solos, etc.

your brain tries to follow it and somehow gets hynotized into oblivion.

this may not work

with you but it keeps my thoughts trained and keeps me from thinking

obsessive

thoughts that would otherwise agitate me. and don't look at the clock.

whenever i see that

it's nearing say, 6am, i get hopeless and anxiety sets in. just makes

it harder.

Steve

[Guest guest]

Thanks, Ellen!

I'll have to see about trying the homeopathic aids you suggested! Yay, one thing

I hadn't tried yet!

I, like you, try to avoid the pharmaceuticals whenever possible, but I *will*

keep that suggestion of yours in mind if I can't find a natural way to fix this,

or it doesn't resolve on it's own soon.

Thanks again!

-Meg

rasheedaas <rasheedaas@...> wrote: Wow

Meg,

I know what that's like!

You've tried most things that I would recommend. Here are a couple

more that sometimes work for me-

a homeopathic by Boiron, tablets of Quietude and Sedalia. These are 2

different products, I take both at the same time.

Something else I do is take liquid extracts of various herbs - like

the ones you mentioned, put some in water and sip it about 1 hour

before I want to sleep. I take way more than the amount recommended on

the bottle.

I have the opposite problem than you. I fall asleep easily, then wake

up at 2:30 or so am. Then I can't get back to sleep. Too many worries.

So I get up and start my day. I'm so used to being tired I don't know

what it's like to not be.

Last idea - and I almost never recommend a pharmaceutical - for my

emergencies, when if I don't sleep I'm going to go crazy, I'm sure you

know the feeling, Xanax works like a charm for me.

I do this rarely (not more than 10-12 times a year, as they are very

addictive.) You need a prescription.

Also, check the archives, we have had some discussions on insomnia,

not sure if there will be something new there for you.

Good luck!

ellen

[Guest guest]

Meg

i know the feeling. with me, not sleeping not only causes major brain

fog (which is not

useful when you're walking in NYC traffic), but it seems to cause heart

and vascular heaviness

with me. my heart feels like it's trying to work harder.

as for the music - the reason i use a tape recorder is so that it

automatically shuts off after a few songs.

otherwise, you may get awakened down the road by noisy music. and it's

battery operated so i don't

have to worry about electrical mag. feilds that close to my pillow.

a friend with chronic insomnia for years due to post traumatic stress

once suggested i try

2 radios at once - your brain will exhaust itself trying to focus on

both. sounds good in theory.

never tried it.

Steve

On Feb 15, 2007, at 6:54 PM, Meg Chaney wrote:

> Steve,

>

> Sorry you've been having trouble too! It's got to be one of the more

> frustrating things to deal with; pain, fatigue, all the other symptoms

> I've dealt with, they all have their own frustrations, but not

> sleeping makes me feel like I'm seconds away from some kind of a

> mental breakdown. Sound and light sensitivity have been an issue for

> me since I first got sick too, and I think it's 10X worse when I'm not

> sleeping enough (which is great when you have a very noisy, energetic

> niece in your house for most of every day!). I'll probably try a low

> dose of melatonin tonight (I think mine are 3 mg; maybe I can cut one

> in half). I *was* trying to avoid melatonin, since I've been having

> issues with depression lately, but at this point I think sleeping for

> more than a couple hours wins over the possibility of more depression.

>

> I unplugged my clock after the third night! It was driving me crazy

> looking at it every 3 or 4 minutes for hours on end. I think I'll

> leave it that way indefinitely, too.

>

> I'll probably also give the music a try tonight; I've tried various

> types of music in the past, but I usually went more for the really

> quiet relaxing types, instead of something that would make me think. I

> guess it's kind of like the classy version of counting sheep or

> something.

>

> Hope you're troubles with insomnia resolve soon!

>

> -Meg

>

> steve <xanax006@...> wrote: Meg

> I've been having the same problems with sleep. its' maddening. it

> seems that you need to find just the

> right dose with melatonin. sometimes 1mg works better than 3. in the

> atkins book it mentions some

> people can take up to 20mg. i think that's insane but try the less is

> more technique.

> maybe it works the way homeopathic meds do. i also keep a small

> battery

> tape recorder

> near my pillow and play music that tires me out. not loud or heavy

> music - and not new agy

> stuff. it's got to be something that you can study - like instrumental

> solos, etc.

> your brain tries to follow it and somehow gets hynotized into

> oblivion.

> this may not work

> with you but it keeps my thoughts trained and keeps me from thinking

> obsessive

> thoughts that would otherwise agitate me. and don't look at the clock.

> whenever i see that

> it's nearing say, 6am, i get hopeless and anxiety sets in. just makes

> it harder.

>

> Steve

>

>

>

[Guest guest]

Steve, Meg and everyone,

I've posted an article on insomnia on my blog with corresponding

recommendations for sleep restoration. www.lymebytes.blogspot.com. Perhaps

there's a suggestion there that can help you? In any case, I wish you well in

getting sleep restored...I had insomnia for 6 months last year so I know what

you are going through. Hang in there

Take care, Connie

steve <xanax006@...> wrote:

Meg

i know the feeling. with me, not sleeping not only causes major brain

fog (which is not

useful when you're walking in NYC traffic), but it seems to cause heart

and vascular heaviness

with me. my heart feels like it's trying to work harder.

as for the music - the reason i use a tape recorder is so that it

automatically shuts off after a few songs.

otherwise, you may get awakened down the road by noisy music. and it's

battery operated so i don't

have to worry about electrical mag. feilds that close to my pillow.

a friend with chronic insomnia for years due to post traumatic stress

once suggested i try

2 radios at once - your brain will exhaust itself trying to focus on

both. sounds good in theory.

never tried it.

Steve

On Feb 15, 2007, at 6:54 PM, Meg Chaney wrote:

> Steve,

>

> Sorry you've been having trouble too! It's got to be one of the more

> frustrating things to deal with; pain, fatigue, all the other symptoms

> I've dealt with, they all have their own frustrations, but not

> sleeping makes me feel like I'm seconds away from some kind of a

> mental breakdown. Sound and light sensitivity have been an issue for

> me since I first got sick too, and I think it's 10X worse when I'm not

> sleeping enough (which is great when you have a very noisy, energetic

> niece in your house for most of every day!). I'll probably try a low

> dose of melatonin tonight (I think mine are 3 mg; maybe I can cut one

> in half). I *was* trying to avoid melatonin, since I've been having

> issues with depression lately, but at this point I think sleeping for

> more than a couple hours wins over the possibility of more depression.

>

> I unplugged my clock after the third night! It was driving me crazy

> looking at it every 3 or 4 minutes for hours on end. I think I'll

> leave it that way indefinitely, too.

>

> I'll probably also give the music a try tonight; I've tried various

> types of music in the past, but I usually went more for the really

> quiet relaxing types, instead of something that would make me think. I

> guess it's kind of like the classy version of counting sheep or

> something.

>

> Hope you're troubles with insomnia resolve soon!

>

> -Meg

>

> steve <xanax006@...> wrote: Meg

> I've been having the same problems with sleep. its' maddening. it

> seems that you need to find just the

> right dose with melatonin. sometimes 1mg works better than 3. in the

> atkins book it mentions some

> people can take up to 20mg. i think that's insane but try the less is

> more technique.

> maybe it works the way homeopathic meds do. i also keep a small

> battery

> tape recorder

> near my pillow and play music that tires me out. not loud or heavy

> music - and not new agy

> stuff. it's got to be something that you can study - like instrumental

> solos, etc.

> your brain tries to follow it and somehow gets hynotized into

> oblivion.

> this may not work

> with you but it keeps my thoughts trained and keeps me from thinking

> obsessive

> thoughts that would otherwise agitate me. and don't look at the clock.

> whenever i see that

> it's nearing say, 6am, i get hopeless and anxiety sets in. just makes

> it harder.

>

> Steve

>

>

>

[Guest guest]

Hmm. I've been musing over this for awhile, but I don't think I have

an answer. You know your options very well, so suggesting something

novel is difficult. It sounds like your insomnia is both psychological

and physical. Increased hallucinations and floaters probably means

that you're herxing especially bad right now, which is obviously

throwing your circadian rhythm out of whack. And while this can be

corrected to an extent, the psychological factor is many times more

difficult to fix.

I would suggest that you try backing off the treatment a little bit.

Unlike other bugs like strep or staph, which grow really fast,

borrelia is very slow growing. In the lab, it took like ten and a half

months before borrelia could be seen in the test tube. Taking a little

break, or at least backing off a little bit, won't cause you to lose

much ground.

I would agree with the earlier comment about melatonin. Sometimes

higher doses can actually contribute to disrupting sleep cycles. I

know that if I take 3 mg every day for longer than a week or two, I'll

usually start having insomnia that sounds almost exactly like what you

described (some researches believe that in the presence of too much

supplemental melatonin, your body will stop producing its own).

Melatonin supplementation is a very individual matter, and you should

usually shoot for the lowest effective dosage. Although, I've

personally had some good luck with moderately high dosages (20 mg or

so) on various occasions when nothing else worked, so it might be

worth a shot if you're desperate. Some people even use ultra high

doses (75 mg) as a form of birth control. High doses are normally

quite safe. If you can't get results with a low dose (300 mcg or so),

a high dose is a last ditch option, I suppose.

I also agree that benadryl (dye-free) might be a good thing to try.

Sure, it's a drug, but it's pretty mild and reasonably safe.

Listening to music works for some, but it always made my insomnia MUCH

worse. I think it engaged my brain too much. Being a musician, I think

I must automatically analyze the songs too much, and this

overstimulated the brain and kept me awake. Weeird.

Anyway, I'll revisit this thread if I ever come across any other

options. Insomnia is a key interest of mine.

>

> Hi all,

>

> I seem to recall asking vaguely about this before, but eather I

don't remember what sugggestions were made, or I only *thought* about

asking. Probably the latter, knowing me.

>

> Anyway, I'm having *major* issues with insomnia lately -- I'm not

sure if it's just part of a typical Lyme flare, maybe related to

herxing, or if it's more the emotional stress I'm under right now (I

thought your siblings were supposed to be the good guys!). For the

last week or so now (it gets confusing, trying to figure out how many

night it's been) I've been unable to fall asleep at my regular time

(between 11:00 and 12:00). The first night, I couldn't sleep because

this cold I've got was making it hard to breath. After that the next

few nights it wasn't until after 4:00AM that I was able to fall asleep

(though the cold didn't seem to be a factor anymore), and last night I

didn't fall asleep until well after 6:00AM. I've tried all my " normal "

things, 5-HTP, theanine, valerian, magnesium, tea, melatonin (yes,

even though I'm also having issues with depression still -- I want to

go to SLEEP more than anything right now!), warm baths a bit before

bedtime, warm milk, " sleep "

> music, even my ambien that I reserve for " emergencies " . Heck, I

counted sheep, but they just kept coming and coming! NOTHING is

helping. Once I DO fall asleep I can't seem to stay sleep more 4 hours

(quite a change from a few months ago when I was routinely sleeping

18+ hour a day). Ever since I first got sick, I've been able to nap

during the day (obviously if I was sleeping 18 a day), no matter how

bright it was in a room, or how loud the house was. Now in utter quiet

and darkness, I can't nap, even though I feel completely exhausted.

The lack of sleep (at least I think it's the lack of sleep) is kind of

freaking my brain out I think, and I'm having more hallucinations and

seeing more floaters and stuff than normal too. Anyway, I want to

sleep! Does anybody have *any* recommendations for me, besides what

I've already tried? I'll try just about anything at this point.

>

> THanks!

>

> -Meg

>

[Guest guest]

,

Interestingly (or not? heh), I had decided that I might should try backing off

on my doses for a while to see if that improved things. I stopped everything

completely yesterday, and, coincidence or not, fell asleep last night before

2:00AM (closer to 1:00AM than anything I think!), which is a major improvement

(after so many nights of staying awake past 4:00AM, I figure it will take my

body some time to readjust to a decent schedule, even if the actual insomnia is

gone). I hope the same thing happens again tonight, but I *did* take 1/3 of my

regular dose today, so we'll see I guess if that changes anything.

I'm not sure if this is in any way related to backing off on the dosage (I hate

all the wondering associated with this! I usually feel pretty knowledgable about

health issues, but this still leaves me wondering quite frequently), or if it's

just a regular old flare up or what, but very early on yesterday I started

feeling bad, mentally. *Really* depressed, full of inexplicable, barely

controllable rage... just angry at the world over everything. Feeling like life

was NEVER going to be " right " again. I've had some of that here and there over

the years, but *never* like that before. I felt fine physically though. Then I

woke up this morning feeling a lot better mentally, but just so-so physically.

It's gotten worse as the day has worn on, and I feel pretty awful now (chills,

fever, aches, fatigue, headache, nausea -- which just got MUCH worse when I had

to hold my barfing dog onto the hard floor; every time I let go she ran towards

my *couch*, the little wretch (haHA!). Gotta

love having pets at times.). I guess I'm just wondering if you (or anybody else

of course!) has any experience with this -- that is, backing off your dose and

having a flare as a result. It's probably just a coincidence, and I hate feeling

like I'm always asking stupid questions here, but...um... oh well. The ignorant

must be educated! Heh.

Oh yeah, and I tried a lower dose of melatonin (I cut a 3 mg tablet into

quarters and took one) and it didn't seem to do anything for me. Perhaps I'll

have to try a bigger dose next (and I've read that about mega-high doses for

birth control; I don't think I'd trust something like that personally, but I

guess that's supposed to be what makes the world go round, right? Everybody

being different? Which is actually a lie, but it sounds good to say sometimes.

It should really be " that's what makes the world not-boring " , but that's pretty

lame, so I can see why that didn't become as popular as " that's what makes the

world go round " ).

Also, I gave music a try as Steve (at least I think it was Steve?) suggested,

and it really just kept me more awake. I guess everybody...has something that

works better for them. Wow. That is not what I was trying to say, but I couldn't

figure out what I actually *was* trying to say. I love that so much. Between

stuff like that and the dumb questions, my ego is flatter than a flitter (what

is a flitter, anyway?).

It is COLD in here.

Anyway thanks for your...mostly-non-suggestions.

-Meg

drostollan <drostollan@...> wrote: Hmm.

I've been musing over this for awhile, but I don't think I have

an answer. You know your options very well, so suggesting something

novel is difficult. It sounds like your insomnia is both psychological

and physical. Increased hallucinations and floaters probably means

that you're herxing especially bad right now, which is obviously

throwing your circadian rhythm out of whack. And while this can be

corrected to an extent, the psychological factor is many times more

difficult to fix.

I would suggest that you try backing off the treatment a little bit.

Unlike other bugs like strep or staph, which grow really fast,

borrelia is very slow growing. In the lab, it took like ten and a half

months before borrelia could be seen in the test tube. Taking a little

break, or at least backing off a little bit, won't cause you to lose

much ground.

I would agree with the earlier comment about melatonin. Sometimes

higher doses can actually contribute to disrupting sleep cycles. I

know that if I take 3 mg every day for longer than a week or two, I'll

usually start having insomnia that sounds almost exactly like what you

described (some researches believe that in the presence of too much

supplemental melatonin, your body will stop producing its own).

Melatonin supplementation is a very individual matter, and you should

usually shoot for the lowest effective dosage. Although, I've

personally had some good luck with moderately high dosages (20 mg or

so) on various occasions when nothing else worked, so it might be

worth a shot if you're desperate. Some people even use ultra high

doses (75 mg) as a form of birth control. High doses are normally

quite safe. If you can't get results with a low dose (300 mcg or so),

a high dose is a last ditch option, I suppose.

I also agree that benadryl (dye-free) might be a good thing to try.

Sure, it's a drug, but it's pretty mild and reasonably safe.

Listening to music works for some, but it always made my insomnia MUCH

worse. I think it engaged my brain too much. Being a musician, I think

I must automatically analyze the songs too much, and this

overstimulated the brain and kept me awake. Weeird.

Anyway, I'll revisit this thread if I ever come across any other

options. Insomnia is a key interest of mine.

[Guest guest]

I started ldn for RA at 1.5mg on 22 April but upped it to 3mg on 24th. I'm

having similar difficulties getting to sleep but it's getting better, I think.

It's one of the early side-effects, as I understand it. Either I drop off and

wake up and/or I just lie there till about 2/3 am. I'm retired and can get up

when I like so am lucky enough not to have to worry about it.

I've had some really groggy days and my temper was very short at first, but

hopefully that's passed.

Like you the fatigue is mostly gone though it has come back badly and suddenly

once or twice for a short time. I'm starting without thinking to do things that

had gradually become too difficult over the past months - my grip is getting

better, household chores are easier. Last night I watched a 2-hour long film and

I was so relaxed - no pain in my hands, feet, shoulders, and no muscles seized

up. I could even sit out the commercial breaks.

It seems to me my muscles had been wasting, so, e.g. the muscle between my right

thumb and forefinger used to bulge but is withered. This makes me feel the need

for some gentle muscle-rebuilding exercises. I noticed last night that I could

see the bones and veins in my feet and ankles again whereas they had looked

puffy.

Margaret

>

> I just started LDN on May 1st - 3mg for Rheumatoid Arthritis. Having a

horrible time getting to sleep, but it certainly has helped the fatigue quite a

bit. Any ideas for getting past the insomnia? Also, anyone who can tell me

what their experience has been with LDN for RA would be much appreciated.

>

> Thank you !

>

[Guest guest]

From:

low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of mschooling@...

Sent: 05 May 2009 10:21

low dose naltrexone

Subject: [low dose naltrexone] Re:

Insomnia

I started ldn for RA at 1.5mg on 22 April but upped it to 3mg on 24th.

I'm having similar difficulties

Margaret

As a fellow R A person I am delighted for

you knowing you are improving.

Can I ask….What else do you take,

natural and prescribed and what kind of level has your ESR been at in recent

times?

And did a rheumatologist prescribe LDN

for you.

Im keen to know any other RA experience on

LDN because Im struggling trying to get LDN to settle down for me and earlier

threads tell of my leg pain /blood clot problems.

Thanks

Nuala

[Guest guest]

Nuala

Yes I've been reading about your struggles and feel for you. I'm very new to all

this. My gp said my hands were RA only last December and before that I didn't

even know what it was. I already had osteoarthritis in the neck and have takenn

Piascledine 300 for it for about 5 years now. I also take Nutrof for my eyes

(AMD).

I don't know what an ESR is. My gp sent me to a rheumatologist and after

negative blood tests and xrays showing what looked like deformities he told me I

had arthritis!

A friend had alerted me to ldn and I'd been investigating it so his washing his

hands of me was more a relief than anything else.

End March/early April I stopped all animal fats which for me meant no more eggs

or cheese. I've started eating salmon 3/4 times a week, or prawns, chicken,

duck. I stopped bread. I was surprised at how much better this made me feel -

less/no bloating. I started Vit E 400, fish oil. I had been taking mother

tincture milk thistle but stopped it because of diarrhoea which has nevertheless

plagued me ever since, no matter what. I had a no solids day on Saturday and

hopefully it has settled at last. I've ordered Allicin and a probiotic which

should arrive this week. Keeping fingers crossed in the meantime. I'm also

taking chlorella.

I stopped the 160mg aspirin (prescribed for a blood platelet proliferation

diagnosed in the 1980s - I'm due to have my 3-monthly blood test next month and

my annual visit to the hematologist is in June) and the occasional 200mg

Ibuprofen. I had had 3 courses of prednison which had helped but the symptoms

returned each time I stopped.

Since starting all this I've had hardly any inflammation/swelling/pain. I asked

my gp for naltrexone and she prescribed it for me.

Other supplements were advised (zinc, copper, evening primrose) but I've not

been able to keep track of it all - nor can I cope with all the contrary

warnings so I'm just keeping to the above for now. Having said that I've run out

of the Vit E and fish oil and am waiting for an order to arrive. Trouble is I'm

in France and they were twice as expensive for half the content at the pharmacie

.....

I agree there's not enough input about RA and ldn. I was even told ldn didn't

work for RA but so far my experience contradicts that. I'm just assuming it will

work for most if not all autoimmune disorders.

I really hope your leg gets sorted out soon.

Margaret

>

> Margaret

>

> As a fellow R A person I am delighted for you knowing you are improving.

>

> Can I ask..What else do you take, natural and prescribed and what kind of

> level has your ESR been at in recent times?

>

> And did a rheumatologist prescribe LDN for you.

>

> Im keen to know any other RA experience on LDN because Im struggling trying

> to get LDN to settle down for me and earlier threads tell of my leg pain

> /blood clot problems.

>

> Thanks

>

> Nuala

>

[Guest guest]

if you are in france and want cheap supplements try iherb.com

http://www.iherb.com/Default.aspx

we are in the ntherlands and it is almost half the price and arrive within a

week you can find almost all you need and when you order for mor then 40 dollars

and less the 80 and it does not weigh too much then the shipping is very cheap.

up to now all my orders and they were many were without custom payments.

if you put this code ZAH179

you get 5 dollars off your first order

> >

> > Margaret

> >

> > As a fellow R A person I am delighted for you knowing you are improving.

> >

> > Can I ask..What else do you take, natural and prescribed and what kind of

> > level has your ESR been at in recent times?

> >

> > And did a rheumatologist prescribe LDN for you.

> >

> > Im keen to know any other RA experience on LDN because Im struggling trying

> > to get LDN to settle down for me and earlier threads tell of my leg pain

> > /blood clot problems.

> >

> > Thanks

> >

> > Nuala

> >

>

[Guest guest]

I've been blogging my experiences as new LDN patient here -

http://wearecrohns.org/bobthomson70/journals

I had some initial problems sleeping but I changed to taking my LDN 3 hours

before bed and this stopped being a problem. I realise some people say you

should always take it before bed. In fact, my clinic says their clinical

experience is that it doesn't matter when you take it at all.

What I have found though is that when I started and when I went from 1 - 2 mg a

day dosage, there was a period of a week's adjustment in which I needed more

sleep (No problem getting to sleep, more a problem getting pu again any less

than 10 hours later!).

I am lucky, in a way, as I am not working just now - If I was, I'd have to go to

bed at 21:00 to get up for work.

Today is the first day since 2mg where I've been awake OK after 8 hours sleep.

I hope the insomnia is just a temporary thing or you can work around it and the

LDN works for you.

Cheers,

-Bob T.

Bob Thomson, Sun Certified Solaris System and Network Administrator,

Oracle Certified Associate Database Administrator

tty Ltd - http://www.tty-ltd.com

http://www.twitter.com/bobthomson70

Crohn's and LDN Links -

http://ldnonthenhs.blogspot.com

http://wearecrohns.org/bobthomson70/journals

http://ldnforcrohns.blogspot.com

http://ldnnow.co.uk

> From: mschooling@... <mschooling@...>

> Subject: [low dose naltrexone] Re: Insomnia

> low dose naltrexone

> Date: Tuesday, May 5, 2009, 10:20 AM

> I started ldn for RA at 1.5mg on 22 April but upped it to

> 3mg on 24th. I'm having similar difficulties getting to

> sleep but it's getting better, I think. It's one of

> the early side-effects, as I understand it. Either I drop

> off and wake up and/or I just lie there till about 2/3 am.

> I'm retired and can get up when I like so am lucky

> enough not to have to worry about it.

>

> I've had some really groggy days and my temper was very

> short at first, but hopefully that's passed.

>

> Like you the fatigue is mostly gone though it has come back

> badly and suddenly once or twice for a short time. I'm

> starting without thinking to do things that had gradually

> become too difficult over the past months - my grip is

> getting better, household chores are easier. Last night I

> watched a 2-hour long film and I was so relaxed - no pain in

> my hands, feet, shoulders, and no muscles seized up. I could

> even sit out the commercial breaks.

>

> It seems to me my muscles had been wasting, so, e.g. the

> muscle between my right thumb and forefinger used to bulge

> but is withered. This makes me feel the need for some gentle

> muscle-rebuilding exercises. I noticed last night that I

> could see the bones and veins in my feet and ankles again

> whereas they had looked puffy.

> Margaret

>

>

> >

> > I just started LDN on May 1st - 3mg for Rheumatoid

> Arthritis. Having a horrible time getting to sleep, but it

> certainly has helped the fatigue quite a bit. Any ideas for

> getting past the insomnia? Also, anyone who can tell me

> what their experience has been with LDN for RA would be much

> appreciated.

> >

> > Thank you !

> >

[Guest guest]

Thanks for all yopur personal info which I

will absorb at some point.

I found the Insomnia settled down, but

also found I needed a much smaller dose(1.5) as 3 and then 4.5 had me totally

tight.

I was told by a pharmacist that TRA may

need a much smaller dose trhan that for MS.

Good luck with your program.

nuala

From:

low dose naltrexone [mailto:low dose naltrexone ] On Behalf Of mschooling@...

Sent: 05 May 2009 12:19

low dose naltrexone

Subject: [low dose naltrexone] Re:

Insomnia

>

[Guest guest]

We all seem to react in our own ways and I suppose it's inevitable that a few

people will react badly, though I hope that turns out not to be so - I mean that

the problems turn out to have another cause. I don't see the logic in what the

pharmacist said, but that's because I'm assuming MS is also an autoimmune

disorder. So far (touch wood and whistle) my experience doesn't bear what he

says out.

Thanks for your good wishes - and I really hope yours get sorted very soon.

Margaret

>

> I was told by a pharmacist that TRA may need a much smaller dose trhan that

> for MS.

>

> Good luck with your program.

>

> nuala

[Guest guest]

Thank you for your reply -- I'm hoping LDN is my miracle. I've been doing the antibiotic protocol (100 mg, MWF) and am sticking with that and using the ldn now for a week. I've noticed very subtle differences, but have had horrible pains in my "bad" knee.. I realize its not going to make it go away over night, but if it can help me achieve remission, I'm sticking with it. I took the triple DMARD therapy for the first year (methotrexate, plaquenil, sulfasalazine), but it didn't help more than the antibiotics did, and I went off it. I've had pretty good luck with NST (neurostructural technique) for pain.

If I could just walk normally and without so much pain, I'd be happy.

Again, thank you for your support and information ! I wish you all the best with LDN and hope it helps !

Kempster

From: mschooling@... <mschooling@...>Subject: [low dose naltrexone] Re: Insomnialow dose naltrexone Date: Tuesday, May 5, 2009, 4:20 AM

I started ldn for RA at 1.5mg on 22 April but upped it to 3mg on 24th. I'm having similar difficulties getting to sleep but it's getting better, I think. It's one of the early side-effects, as I understand it. Either I drop off and wake up and/or I just lie there till about 2/3 am. I'm retired and can get up when I like so am lucky enough not to have to worry about it.. I've had some really groggy days and my temper was very short at first, but hopefully that's passed.Like you the fatigue is mostly gone though it has come back badly and suddenly once or twice for a short time. I'm starting without thinking to do things that had gradually become too difficult over the past months - my grip is getting better, household chores are easier. Last night I watched a 2-hour long film and I was so relaxed - no pain in my hands, feet, shoulders, and no muscles seized up. I could even sit out the commercial breaks.It seems to me my

muscles had been wasting, so, e.g. the muscle between my right thumb and forefinger used to bulge but is withered. This makes me feel the need for some gentle muscle-rebuilding exercises. I noticed last night that I could see the bones and veins in my feet and ankles again whereas they had looked puffy.Margaret>> I just started LDN on May 1st - 3mg for Rheumatoid Arthritis. Having a horrible time getting to sleep, but it certainly has helped the fatigue quite a bit. Any ideas for getting past the insomnia? Also, anyone who can tell me what their experience has been with LDN for RA would be much appreciated.> > Thank you

!>

[Guest guest]

There seems to be a developing data set

from this site that Ra people tend to get much increased pain in the joints and

muscles which are already in trouble. Ill start a new thread on this.

Can you say what neurostructural technique

is please….I too have errible knee trouble.

And good luck . |Hang on in there. Like

you Ill do the long haul to find an answer to this damnede RA.

Nuala

From:

low dose naltrexone

[mailto:low dose naltrexone ]

On Behalf Of Rochelle Kempster

Sent: 08 May 2009 23:28

low dose naltrexone

Subject: Re: [low dose naltrexone]

Re: Insomnia

Thank you for your reply -- I'm hoping LDN is my

miracle. I've been doing the antibiotic protocol (100 mg, MWF) and am

sticking with that and using the ldn now for a week. I've noticed very

subtle differences, but have had horrible pains in my " bad "

knee.. I realize its not going to make it go away over night, but if it

can help me achieve remission, I'm sticking with it. I took the triple

DMARD therapy for the first year (methotrexate, plaquenil, sulfasalazine),

but it didn't help more than the antibiotics did, and I went off it.

I've had pretty good luck with NST (neurostructural technique) for pain.

If I could just walk normally and without so much

pain, I'd be happy.

Again, thank you for your support and information

! I wish you all the best with LDN and hope it helps !

Kempster

From: mschoolingrocketmail <mschoolingrocketmail>

Subject: [low dose naltrexone] Re: Insomnia

low dose naltrexone

Date: Tuesday, May 5, 2009, 4:20 AM

I started ldn for RA at

1.5mg on 22 April but upped it to 3mg on 24th. I'm having similar

difficulties getting to sleep but it's getting better, I think. It's one of

the early side-effects, as I understand it. Either I drop off and wake up

and/or I just lie there till about 2/3 am. I'm retired and can get up when I

like so am lucky enough not to have to worry about it..

I've had some really groggy days and my temper was very short at first, but

hopefully that's passed.

Like you the fatigue is mostly gone though it has come back badly and

suddenly once or twice for a short time. I'm starting without thinking to do

things that had gradually become too difficult over the past months - my grip

is getting better, household chores are easier. Last night I watched a 2-hour

long film and I was so relaxed - no pain in my hands, feet, shoulders, and no

muscles seized up. I could even sit out the commercial breaks.

It seems to me my muscles had been wasting, so, e.g. the muscle between my

right thumb and forefinger used to bulge but is withered. This makes me feel

the need for some gentle muscle-rebuilding exercises. I noticed last night

that I could see the bones and veins in my feet and ankles again whereas they

had looked puffy.

Margaret

>

> I just started LDN on May 1st - 3mg for Rheumatoid Arthritis. Having a

horrible time getting to sleep, but it certainly has helped the fatigue quite

a bit. Any ideas for getting past the insomnia? Also, anyone who can tell me

what their experience has been with LDN for RA would be much appreciated.

>

> Thank you !

>

[Guest guest]

why does it take my daughter (nearly 3) at least 2 and sometimes more hours to

fall asleep. she gets so tired. i read about melatonin but what about side

effects.

[Guest guest]

I don't know much about melatonin, but I have read it's something you might not

want to give long term.

If she's a gut kid, it could also be yeast overgrowth. Some signs are giggling

and hyperactivity.

>

> why does it take my daughter (nearly 3) at least 2 and sometimes more hours to

fall asleep. she gets so tired. i read about melatonin but what about side

effects.

>

>

>

>

[Guest guest]

she doesn't seem to have a leaky gut. we just got back results. but she is

giggly and sort of hyper.

From: cimna19 <cimna19@...>

Subject: Re: insomnia

Date: Tuesday, January 5, 2010, 9:43 AM

 

I don't know much about melatonin, but I have read it's something you might not

want to give long term.

If she's a gut kid, it could also be yeast overgrowth. Some signs are giggling

and hyperactivity.

>

> why does it take my daughter (nearly 3) at least 2 and sometimes more hours to

fall asleep. she gets so tired. i read about melatonin but what about side

effects.

>

>

>

>

[Guest guest]

leia just sits in her bed. she just babbles away. and stims her head from side

to side. i will speak to my DAN doctor.

From: Jack <jrussell8@...>

Subject: Re: insomnia

Date: Tuesday, January 5, 2010, 10:17 AM

 

Melatonin was an absolute life-saver for us. Without it Danny would just lay in

bed reciting the alphabet for hours on end, and Kenny was just a wreck refusing

to go to bed etc. Every night was a stressful train wreck despite a consistent

routine and doing all the right things, etc.

I think with melatonin that either you need it and it works, or you don't need

it and it doesn't. The effect is pretty obvious. There is no sense of drugging

the kid, the kid simply doesn't make enough for their internal clock to work

right.

We saw no side effects, expect that at higher doses I've heard that it can cause

nightmares. We actually only give 1/2 mg. but they say 1-3 is fine. 3 mg worked

worse for us, so if it isn't working I wouldn't recommend an increase.

I think the concern is that long term by supplementing melatonin the body thinks

it doesn't need to make any and you end up needing it forever I guess.

I posed this questions to a Beth Malow, who is doing an on-going study at

Vanderbilt with melatonin in kids with ASD and sleep problems and she had this

to said (although maybe she wouldn't be happy about me quoting her personal

email-but hey we're all friends here right?)

" Over time, kids can come off of it sometimes—it seems to get their sleep-wake

rhythms in sync. But sometimes they need it and I don't worry about continuing

it as there aren't may side effects. "

>

> why does it take my daughter (nearly 3) at least 2 and sometimes more hours to

fall asleep. she gets so tired. i read about melatonin but what about side

effects.

>

>

>

>

[Guest guest]

From what I understand taking melatonin low dose is unlikely to produce

side-effects apart from a bit of grogginess for some people when waking,

although I also have heard that some people can have night-mares. If your body

does not need it, it won't do anything, if it does then it will help and if it

is stopped your body will go back to producing as much as it would have done if

you had not taken it in the 1st place.

About 1/2mg to 3mg should be OK for most kids.

So I would agree with Jack.

Kenny

> >

> > why does it take my daughter (nearly 3) at least 2 and sometimes more hours

to fall asleep. she gets so tired. i read about melatonin but what about side

effects.

> >

> >

> >

> >

[Guest guest]

thank you

From: k.ozbo <k.ozbo@...>

Subject: Re: insomnia

Date: Wednesday, January 6, 2010, 8:33 AM

 

From what I understand taking melatonin low dose is unlikely to produce

side-effects apart from a bit of grogginess for some people when waking,

although I also have heard that some people can have night-mares. If your body

does not need it, it won't do anything, if it does then it will help and if it

is stopped your body will go back to producing as much as it would have done if

you had not taken it in the 1st place.

About 1/2mg to 3mg should be OK for most kids.

So I would agree with Jack.

Kenny

> >

> > why does it take my daughter (nearly 3) at least 2 and sometimes more hours

to fall asleep. she gets so tired. i read about melatonin but what about side

effects.

> >

> >

> >

> >

[Guest guest]

> why does it take my daughter (nearly 3) at least 2 and sometimes more hours to

fall asleep. she gets so tired.

The most common causes are phenol issues and yeast overgrowth

http://www.danasview.net/phenol.htm

http://www.danasview.net/yeast.htm

Dana

[Guest guest]

With me that is often a food reaction.

                                

From: Jack <jrussell8hotmail (DOT) com>

Subject: Re: insomnia

Date: Tuesday, January 5, 2010, 10:17 AM

 

Melatonin was an absolute life-saver for us. Without it Danny would just lay in

bed reciting the alphabet for hours on end, and Kenny was just a wreck refusing

to go to bed etc. Every night was a stressful train wreck despite a consistent

routine and doing all the right things, etc.

I think with melatonin that either you need it and it works, or you don't need

it and it doesn't. The effect is pretty obvious. There is no sense of drugging

the kid, the kid simply doesn't make enough for their internal clock to work

right.

We saw no side effects, expect that at higher doses I've heard that it can cause

nightmares. We actually only give 1/2 mg. but they say 1-3 is fine. 3 mg worked

worse for us, so if it isn't working I wouldn't recommend an increase.

I think the concern is that long term by supplementing melatonin the body thinks

it doesn't need to make any and you end up needing it forever I guess.

I posed this questions to a Beth Malow, who is doing an on-going study at

Vanderbilt with melatonin in kids with ASD and sleep problems and she had this

to said (although maybe she wouldn't be happy about me quoting her personal

email-but hey we're all friends here right?)

" Over time, kids can come off of it sometimes—it seems to get their sleep-wake

rhythms in sync. But sometimes they need it and I don't worry about continuing

it as there aren't may side effects. "

>

> why does it take my daughter (nearly 3) at least 2 and sometimes more hours to

fall asleep. she gets so tired. i read about melatonin but what about side

effects.

>

>

>

>