Re: insomnia: Tips to help sleep, other than sleep meds

November 22, 2004

I do not have FM so I cannot say what is good for that. However, I have had

sleep

problems as well. I have been dx with Hashimoto's, connective tissue disease

/lupus and

Multiple sclerosis.

Some sleep medications are more harmful than others. Benzodiazepenes like

Restoril

actually prevent deep sleep, while ambien does not, from what my doc explained.

However, even ambien can become habit forming. One doctor even prescribed GHB

(Xyrem), which is extremely controlled and I believe very habit forming.

So what's wrong with habit forming? Well, the body gets used to requiring

medication.

Are there other ways to help get sleep?

There were for me...I didn't think so, but I tried what my (new) doc recommended

and it

has helped. I'm starting to sleep again.

I take melatonin (2-3 mg) at 10 pm at night. I also have followed suggestions

for 'sleep

hygiene' to get my mind and body accustomed to the bedroom as being for sleep

(or sex)

only and not for work, or reading or television. I keep the bedroom dark at

night - I have

even removed clocks with LEDs. If I can't sleep for more than 45 min, I get up

and walk

out of the bedroom, into another room. I read, keeping lights low, until I get

sleepy.

Then I go back into the bedroom.

I forced myself to stay awake during the day. If I had to take a nap, I take a

nap in the

afternoon for no more than an hour. Not in the morning or evening...

For awhile, I drank warm milk (with cinnamon & nutmeg, like egg nog) just before

I went

to bed.

I am now sleeping most of the night without medication. I had been taking sleep

meds for

years.

> ,

>

> You need to take a sleep medication. If your doctor

> understands what FM is all about, she will prescribe a

> sleep medication for you. If not, you need to find a

> doctor who will.

>

> What if you found an online support group for FM, and

> asked then to recommend a doctor in your area. A sleep

> disorder goes hand-in-glove with FM. . . They can

> induce FM in anyone by depriving them of sleep long

> enough. . . Most people will bounce back after

> catching up on their sleep, but those prone to FM have

> something new to contend with!

>

> I've been taking a sleep medication for at least five

> years, probably seven. I haven't noticed any side

> effects. I have done without the pills on occasion,

> and I still sleep, but not as deeply. Deep sleep is

> when your body repairs the wear and tear of daily

> life. Without deep sleep, your body is going to

> gradually go downhill.

>

> Hugs and prayers,

>

> Rogene

November 22, 2004

I do not have FM so I cannot say what is good for that. However, I have had

sleep

problems as well. I have been dx with Hashimoto's, connective tissue disease

/lupus and

Multiple sclerosis.

Some sleep medications are more harmful than others. Benzodiazepenes like

Restoril

actually prevent deep sleep, while ambien does not, from what my doc explained.

However, even ambien can become habit forming. One doctor even prescribed GHB

(Xyrem), which is extremely controlled and I believe very habit forming.

So what's wrong with habit forming? Well, the body gets used to requiring

medication.

Are there other ways to help get sleep?

There were for me...I didn't think so, but I tried what my (new) doc recommended

and it

has helped. I'm starting to sleep again.

I take melatonin (2-3 mg) at 10 pm at night. I also have followed suggestions

for 'sleep

hygiene' to get my mind and body accustomed to the bedroom as being for sleep

(or sex)

only and not for work, or reading or television. I keep the bedroom dark at

night - I have

even removed clocks with LEDs. If I can't sleep for more than 45 min, I get up

and walk

out of the bedroom, into another room. I read, keeping lights low, until I get

sleepy.

Then I go back into the bedroom.

I forced myself to stay awake during the day. If I had to take a nap, I take a

nap in the

afternoon for no more than an hour. Not in the morning or evening...

For awhile, I drank warm milk (with cinnamon & nutmeg, like egg nog) just before

I went

to bed.

I am now sleeping most of the night without medication. I had been taking sleep

meds for

years.

> ,

>

> You need to take a sleep medication. If your doctor

> understands what FM is all about, she will prescribe a

> sleep medication for you. If not, you need to find a

> doctor who will.

>

> What if you found an online support group for FM, and

> asked then to recommend a doctor in your area. A sleep

> disorder goes hand-in-glove with FM. . . They can

> induce FM in anyone by depriving them of sleep long

> enough. . . Most people will bounce back after

> catching up on their sleep, but those prone to FM have

> something new to contend with!

>

> I've been taking a sleep medication for at least five

> years, probably seven. I haven't noticed any side

> effects. I have done without the pills on occasion,

> and I still sleep, but not as deeply. Deep sleep is

> when your body repairs the wear and tear of daily

> life. Without deep sleep, your body is going to

> gradually go downhill.

>

> Hugs and prayers,

>

> Rogene

November 22, 2004

Yes, sleep meds are addictive. If you have fibromyalgia and a sleep

disorder, all the recommended things may help, but may not help enough all

the time. And lack of sleep makes fibromyalgia much worse!

I believe in trying everything else before meds.

Lynda

At 07:47 AM 11/22/2004, you wrote:

>I do not have FM so I cannot say what is good for that. However, I have

>had sleep

>problems as well. I have been dx with Hashimoto's, connective tissue

>disease /lupus and

>Multiple sclerosis.

>

>Some sleep medications are more harmful than others. Benzodiazepenes like

>Restoril

>actually prevent deep sleep, while ambien does not, from what my doc

>explained.

>However, even ambien can become habit forming. One doctor even prescribed

>GHB

>(Xyrem), which is extremely controlled and I believe very habit forming.

>

>So what's wrong with habit forming? Well, the body gets used to requiring

>medication.

>Are there other ways to help get sleep?

>There were for me...I didn't think so, but I tried what my (new) doc

>recommended and it

>has helped. I'm starting to sleep again.

>

>I take melatonin (2-3 mg) at 10 pm at night. I also have followed

>suggestions for 'sleep

>hygiene' to get my mind and body accustomed to the bedroom as being for

>sleep (or sex)

>only and not for work, or reading or television. I keep the bedroom dark

>at night - I have

>even removed clocks with LEDs. If I can't sleep for more than 45 min, I

>get up and walk

>out of the bedroom, into another room. I read, keeping lights low, until

>I get sleepy.

>Then I go back into the bedroom.

>I forced myself to stay awake during the day. If I had to take a nap, I

>take a nap in the

>afternoon for no more than an hour. Not in the morning or evening...

>For awhile, I drank warm milk (with cinnamon & nutmeg, like egg nog) just

>before I went

>to bed.

>

>I am now sleeping most of the night without medication. I had been taking

>sleep meds for

>years.

>

> > ,

> >

> > You need to take a sleep medication. If your doctor

> > understands what FM is all about, she will prescribe a

> > sleep medication for you. If not, you need to find a

> > doctor who will.

> >

> > What if you found an online support group for FM, and

> > asked then to recommend a doctor in your area. A sleep

> > disorder goes hand-in-glove with FM. . . They can

> > induce FM in anyone by depriving them of sleep long

> > enough. . . Most people will bounce back after

> > catching up on their sleep, but those prone to FM have

> > something new to contend with!

> >

> > I've been taking a sleep medication for at least five

> > years, probably seven. I haven't noticed any side

> > effects. I have done without the pills on occasion,

> > and I still sleep, but not as deeply. Deep sleep is

> > when your body repairs the wear and tear of daily

> > life. Without deep sleep, your body is going to

> > gradually go downhill.

> >

> > Hugs and prayers,

> >

> > Rogene

>

November 22, 2004

Agreed, Lynda. Sleep meds can be a vicious cycle, and ultimately

counter-productive.

Best to find a way to sleep without them, if at all possible.

> > > ,

> > >

> > > You need to take a sleep medication. If your doctor

> > > understands what FM is all about, she will prescribe a

> > > sleep medication for you. If not, you need to find a

> > > doctor who will.

> > >

> > > What if you found an online support group for FM, and

> > > asked then to recommend a doctor in your area. A sleep

> > > disorder goes hand-in-glove with FM. . . They can

> > > induce FM in anyone by depriving them of sleep long

> > > enough. . . Most people will bounce back after

> > > catching up on their sleep, but those prone to FM have

> > > something new to contend with!

> > >

> > > I've been taking a sleep medication for at least five

> > > years, probably seven. I haven't noticed any side

> > > effects. I have done without the pills on occasion,

> > > and I still sleep, but not as deeply. Deep sleep is

> > > when your body repairs the wear and tear of daily

> > > life. Without deep sleep, your body is going to

> > > gradually go downhill.

> > >

> > > Hugs and prayers,

> > >

> > > Rogene

> >

November 22, 2004

All sleep medications that I know of are habituating. It takes more of the

same

medication to obtain sleep. And sooner or later, they stop working. Some

people

alternate medication to try to avoid this, but sooner or later that stops

working and then

you just have dependence on multiple medications.

There is often a rebound effect, if taken for a long time, that can actually

make sleep

habits worse. This is a very real danger.

And as Lynda said, lack of sleep wreaks havoc on healthy people, but for those

of us with

immune disorders it can be terrible.

If there is any way at all that you can sleep without sleeping pills, you'll be

better off in the

long run.

Sleeping pills were never intended to be prescribed long term.

> > > ,

> > >

> > > You need to take a sleep medication. If your doctor

> > > understands what FM is all about, she will prescribe a

> > > sleep medication for you. If not, you need to find a

> > > doctor who will.

> > >

> > > What if you found an online support group for FM, and

> > > asked then to recommend a doctor in your area. A sleep

> > > disorder goes hand-in-glove with FM. . . They can

> > > induce FM in anyone by depriving them of sleep long

> > > enough. . . Most people will bounce back after

> > > catching up on their sleep, but those prone to FM have

> > > something new to contend with!

> > >

> > > I've been taking a sleep medication for at least five

> > > years, probably seven. I haven't noticed any side

> > > effects. I have done without the pills on occasion,

> > > and I still sleep, but not as deeply. Deep sleep is

> > > when your body repairs the wear and tear of daily

> > > life. Without deep sleep, your body is going to

> > > gradually go downhill.

> > >

> > > Hugs and prayers,

> > >

> > > Rogene

> >

November 22, 2004

Thank you everyone. I went to health food store and bought some time release melatonin and a NuAge Homeopathic tissue remedy called tissue A insomnia it's suppose to restore natural sleep habits.

Rogene, the medication that my dr. prescribed will run out in 4 days, then I don't know what I'll do, I've had the most success with it. I am definately better.

I've been seeing chiropractor and he said I have a straight neck, without curve, which can cause headaches and referred pain. So, there you go, it's my lack of sleep and spine that are inducing my headaces. I took elavil last night but absolutely hate it, cause I was really drowsy today, but did get lots of sleep.

My mood is better today, like super better. If I could just get some normal rest I think I'd be normal agian, most of the way.

I'll see dr. tomorrow, and see if she'll either extend my dose or give me samples of ambien. I think, I'll only try the time release melatonin tonight and the tissue A insomnia, which is a type of salt that works on your cells to get them to work right. Has anyone ever heard of that?

I ony sleep in my bedroom, sometimes I read a little before bed. When I was taking the benadrl my eyes got so dry I couldn't use them.

Unfortuneately my clock is really messed up. It takes me about 12 hours to get refreshed sleep. Sleep is like work for me. But, at least I feel well today and not depressed. Thank you ladies for your support. Rogene, I will pull out my FMJ books to show to dr.

God Bless ladies,

MollyBloom54 <jawlaw93@...> wrote:

Agreed, Lynda. Sleep meds can be a vicious cycle, and ultimately counter-productive.Best to find a way to sleep without them, if at all possible.> > > ,> > >> > > You need to take a sleep medication. If your doctor> > > understands what FM is all about, she will prescribe a> > > sleep medication for you. If not, you need to find a> > > doctor who will.> > >> > > What if you found an online support group for FM, and> > > asked then to recommend a doctor in your area. A sleep> > > disorder goes hand-in-glove with FM. . . They can> > > induce FM in anyone by depriving them of sleep long> > > enough. . . Most people will bounce back after> > > catching up on their sleep, but those prone to FM have> > > something new to contend with!> > >> > > I've been taking a sleep medication for at least five> > > years, probably seven. I haven't

noticed any side> > > effects. I have done without the pills on occasion,> > > and I still sleep, but not as deeply. Deep sleep is> > > when your body repairs the wear and tear of daily> > > life. Without deep sleep, your body is going to> > > gradually go downhill.> > >> > > Hugs and prayers,> > >> > > Rogene> >> >> >> >> >> >> >

November 23, 2004

Sleep has been work for me!! I know what you mean...

However, trying what the doc suggested (see sleep hygiene) has made a big

difference.

It has helped me readjust my 'clock'. I am sleeping now without Ambien, or

other sleep

meds. Before, I wasn't even sleeping with the meds! It was horrible.

Tissue A insomnia? No idea what that is.

Melatonin seems to help. I have heard about 'Gaba' but know nothing about it.

I strongly urge anyone to reconsider taking ambien, or restoril or any of the

sleep

medications unless it is really a short term basis and very unusual situation.

The problem

is...that these meds are not intended for long term. They do stop working

after awhile,

and then you have a rebound effect, and getting back into normal sleep patterns

is even

harder. What a nightmare that is!

> > > > ,

> > > >

> > > > You need to take a sleep medication. If your doctor

> > > > understands what FM is all about, she will prescribe a

> > > > sleep medication for you. If not, you need to find a

> > > > doctor who will.

> > > >

> > > > What if you found an online support group for FM, and

> > > > asked then to recommend a doctor in your area. A sleep

> > > > disorder goes hand-in-glove with FM. . . They can

> > > > induce FM in anyone by depriving them of sleep long

> > > > enough. . . Most people will bounce back after

> > > > catching up on their sleep, but those prone to FM have

> > > > something new to contend with!

> > > >

> > > > I've been taking a sleep medication for at least five

> > > > years, probably seven. I haven't noticed any side

> > > > effects. I have done without the pills on occasion,

> > > > and I still sleep, but not as deeply. Deep sleep is

> > > > when your body repairs the wear and tear of daily

> > > > life. Without deep sleep, your body is going to

> > > > gradually go downhill.

> > > >

> > > > Hugs and prayers,

> > > >

> > > > Rogene

> > >

November 23, 2004

Yes, I used to be an addictions counselor (I am a social worker with a

master's degree). Addictions are nasty, and the rebound effect is very real.

I know some really swear by their sleep meds, but I think trying everything

else is really the way to go.

Antidepressants are great for fibromyalgia and help tremendously with the

sleep problem, and do not have as many side effects.

A lot of our women have hair loss. Hair loss is one of the more unusual

side-effect of benzodiazepines.

Lynda

At 06:54 PM 11/22/2004, you wrote:

>Sleep has been work for me!! I know what you mean...

>However, trying what the doc suggested (see sleep hygiene) has made a big

>difference.

>It has helped me readjust my 'clock'. I am sleeping now without Ambien,

>or other sleep

>meds. Before, I wasn't even sleeping with the meds! It was horrible.

>Tissue A insomnia? No idea what that is.

>Melatonin seems to help. I have heard about 'Gaba' but know nothing about it.

>

>I strongly urge anyone to reconsider taking ambien, or restoril or any of

>the sleep

>medications unless it is really a short term basis and very unusual

>situation. The problem

>is...that these meds are not intended for long term. They do stop

>working after awhile,

>and then you have a rebound effect, and getting back into normal sleep

>patterns is even

>harder. What a nightmare that is!

>

> > > > > ,

> > > > >

> > > > > You need to take a sleep medication. If your doctor

> > > > > understands what FM is all about, she will prescribe a

> > > > > sleep medication for you. If not, you need to find a

> > > > > doctor who will.

> > > > >

> > > > > What if you found an online support group for FM, and

> > > > > asked then to recommend a doctor in your area. A sleep

> > > > > disorder goes hand-in-glove with FM. . . They can

> > > > > induce FM in anyone by depriving them of sleep long

> > > > > enough. . . Most people will bounce back after

> > > > > catching up on their sleep, but those prone to FM have

> > > > > something new to contend with!

> > > > >

> > > > > I've been taking a sleep medication for at least five

> > > > > years, probably seven. I haven't noticed any side

> > > > > effects. I have done without the pills on occasion,

> > > > > and I still sleep, but not as deeply. Deep sleep is

> > > > > when your body repairs the wear and tear of daily

> > > > > life. Without deep sleep, your body is going to

> > > > > gradually go downhill.

> > > > >

> > > > > Hugs and prayers,

> > > > >

> > > > > Rogene

> > > >

November 23, 2004

I don't know about FM...have no experience with that. Glad the sleep meds work

for you.

I used to take temazepam (restoril) but found it - like ambien or others -

didn't help long

term. But maybe my body is strange, who knows.

The one thing several docs have told me is that temazepam does not allow you the

quality

deep sleep that ambien does...as far as sleeping meds go. On the other hand,

temazepam

is a whole lot less expensive than ambien. So I suppose it's a tradeoff.

I did not know Neurontin was a sleep med. Didn't think it was. In fact, I

thought that was

a seizure medication that was sometimes presribed for neuropathic pain (eg the

burning

feet etc.)! It is very strange that it caused burning. I guess that goes to

show that one

person's chemistry can be very different from another.

I take Cymbalta, an antidepressant, that helps with pain (as well as being an

antidepressant). ( I also take plaquenil for connective tissue disease.)

Neither of those

help with sleep.

> I know I can't speak for everyone, but I find my sleep

> medication to be my best option. . . The wife and

> daughter of the the neurologist who started me on it

> both had FM. He knew first hand how devastating the

> lack of quality sleep is!

>

> When I was first prescribed Temazapam, the

> prescription was for 1-2 15 mg capsule per night. . .

> I refused to take more than one from the start. When I

> still have a difficult time sleeping, even with

> medication, it's time to try everything else . . .

> Sleep Time tea, deep breathing, hot bath, sauna,

> boring TV show, or boring book (At one time, I used an

> algebra book - Seriously, my mind would say, " Forget

> it, I'm going to sleep " .

>

> My doctors have run hot and cold on sleep meds. . .

> The ones who tried to take me off of it, actually

> prescribed much more dangerous (and

> expensive)medication. One of them was Neurontin, that

> depletes magnesium and leads to the burning feet I

> had.

>

> At times, when I'm feeling really well, I stop taking

> my sleep medication. . . I've stayed off of it for as

> long as two months. Long enough, I would think, to

> overcome any dependency issues. However, after waking

> repeatedly during the night whenever hubby snored,

> rolled over, or got up, I decided that getting a sound

> sleep is more important.

>

> I wake up fully rested, ready to go every morning. No

> hangover, so side effects that I've ever noticed.

>

> My current doctor supports me 100% with this

> medication.

>

> Rogene

November 23, 2004

Molly, BTW, Welcome to the group! . . . You are new,

aren't you?

Neurontin was developed for seizures . . . but turned

out not to be as good as products already available. .

.. The manufacturer sent salesmen across the country

who, in some cases actually went into examining rooms

with the doctor, then stepped out in the hall and told

the doctor how much Neurontin to prescribe for almost

everything! . . . If the starting dose didn't work,

they were to double and redouble it. . .

If the doctors prescribed enough Neurontin, they

received nice little trips. If they REALLY got on the

bandwagon, they were paid as speakers to other doctors

on these trips! Neuontin has been recommended to me

for at least four different reasons! To replace

Temazapam is only one.

I have (had?) a condition called Erythromelalgia (EM).

It felt as though I was walking on hot pavement. After

thousands of dollars worth of fruitless tests, I found

the diagnosis on the web. . . And I found a support

group that was really gloomy! . . . All the suffer's

were getting worse and worse! The drug of choice for

EM is Neurontin! . . . Then a joined the group who

had had been completely disabled with EM for two

years. With his medical knowledge he started

researching the condition. He has since established a

Magnesium Research Institute.

http://www.magnesiumresearchlab.com/. According to

him, Magnesium is required for the body to produce

over 300 enzymes needed for health.

Neurontin reduces nerve impulses at one level. . .

This inhibits the sensation of burning. However,

Neurontin also depletes Magnesium, which in turn

causes more burning. . . as well as a host of other

problems, including FM.

The feds have fined the manufacturer's of Neurontin

$430,000,000 for the way they marketed the drug.

(Unfortunately other drugs are marketed this way too.)

There is a gathering class action suit against the

manufacturer's because an alarming number of patients

have either attempted, or committed suicide.

I took information from the EM/Magnesium doctor to my

primary care doctor. She looked at it and saw that it

was primarily about nutrition. She recommended that I

see a local naturopath. After testing, he found my

system to be highly acidic. This put me at high risk

for cancer and kept me from getting the proper

nutrition from food and supplements. Unfortunately,

foods grown with modern farming methods produces food

that is seriously short of magnesium. As we get older,

we draw on the store of Magnesium in our bone and

muscle.

Since that time, one of the women on the EM support

group made the connection between EM and a condition

in horses called Lamintis. . . Same symptoms. Except,

in horses, they know it occurs after horses eat a

particular grass that is high in amines. . . This

creates an acidic system that prevents nutrients from

being absorbed . . . Bingo! Many of the foods we eat

are high in amines! . . . One EM lady has completely

eliminated her symptoms by taking amines out of her

diet.

Magnesium provides the strength for bones while

Calicum provides the density. . . They go together.

Since starting this program, my bone density has

improved to the extent that I no longer have

osteopena. I'm taking Garden of Life Multi as well as

their Calcium, plus a few other products.

Five months ago, I was having a difficult time walking

far enough to shop in stores the size of Walmart. I

was wishing I had courage to ask for a power chair.

Since starting on the naturopath's program, I'm doing

fantastic. My muscles are sliding against each other,

rather than sticking. I'm losing weight without

effort. And, I'm feeling wonderfully energetic.

Nevertheless, I would love to get off my sleep

medication. However, until the day comes that I don't

experience FM symptoms without a sleep medication, I

think that it's a very small price to pay to

experience freedom from pain.

Rogene

November 23, 2004

Thank you for the information on Neurontin. I had heard something about

Neurontin on

NPR, but I didn't recall what exactly. I'm not surprised.... and I'm glad I'm

not taking it.

The pharmaceutical companies have turned into scumbags, and our government has

encouraged it. It's frightening. Just recently, the NYT reported that today's

FDA would not

be able to stop drugs like Vioxx from entering and staying on the market.

That's sad. And should ring alarm bells for us!

Yes, we do need to research drugs. With any drug, there are bound to be

tradeoffs.

Plaquenil, which I take for lupus pain, can damage the retina - so I have to go

to an

opthamologist to have that monitored. But my mind is clear, whereas oxycodone

sends

me off the deep end. And, of course the pain meds treat symptoms and not the

inflammation. But, after my experience this last year, I'm a lot more careful

about what I

take. Especially, now that we cannot trust the FDA to protect us from

out-of-control

pharmaceutical companies.

Oh, btw, I am somewhat 'new' to this forum. I have had it bookmarked but

haven't really

explored it before. I felt a little odd here, because I had silicone and not

saline implants.

WEll, actually I had bilumin which were both. Maybe that's why I have been so

sick?? who

knows. I had the implants 20 years, and they were badly ruptured. I had been

sick with

rashes and nerve problems for several years but didn't know why.

I am taking magnesium, as was suggested by a 'holistic' MD. I took what I could

from his

suggestions, and went back to my internist -- that is covered by my insurance!

THe magnesium and vitamins have helped me. Magnesium is a biggee.

But, it can also cause loose bowels, and I have had to be careful for that

reason.

> Molly, BTW, Welcome to the group! . . . You are new,

> aren't you?

>

> Neurontin was developed for seizures . . . but turned

> out not to be as good as products already available. .

> . The manufacturer sent salesmen across the country

> who, in some cases actually went into examining rooms

> with the doctor, then stepped out in the hall and told

> the doctor how much Neurontin to prescribe for almost

> everything! . . . If the starting dose didn't work,

> they were to double and redouble it. . .

>

> If the doctors prescribed enough Neurontin, they

> received nice little trips. If they REALLY got on the

> bandwagon, they were paid as speakers to other doctors

> on these trips! Neuontin has been recommended to me

> for at least four different reasons! To replace

> Temazapam is only one.

>

> I have (had?) a condition called Erythromelalgia (EM).

> It felt as though I was walking on hot pavement. After

> thousands of dollars worth of fruitless tests, I found

> the diagnosis on the web. . . And I found a support

> group that was really gloomy! . . . All the suffer's

> were getting worse and worse! The drug of choice for

> EM is Neurontin! . . . Then a joined the group who

> had had been completely disabled with EM for two

> years. With his medical knowledge he started

> researching the condition. He has since established a

> Magnesium Research Institute.

> http://www.magnesiumresearchlab.com/. According to

> him, Magnesium is required for the body to produce

> over 300 enzymes needed for health.

>

> Neurontin reduces nerve impulses at one level. . .

> This inhibits the sensation of burning. However,

> Neurontin also depletes Magnesium, which in turn

> causes more burning. . . as well as a host of other

> problems, including FM.

>

> The feds have fined the manufacturer's of Neurontin

> $430,000,000 for the way they marketed the drug.

> (Unfortunately other drugs are marketed this way too.)

> There is a gathering class action suit against the

> manufacturer's because an alarming number of patients

> have either attempted, or committed suicide.

>

> I took information from the EM/Magnesium doctor to my

> primary care doctor. She looked at it and saw that it

> was primarily about nutrition. She recommended that I

> see a local naturopath. After testing, he found my

> system to be highly acidic. This put me at high risk

> for cancer and kept me from getting the proper

> nutrition from food and supplements. Unfortunately,

> foods grown with modern farming methods produces food

> that is seriously short of magnesium. As we get older,

> we draw on the store of Magnesium in our bone and

> muscle.

>

> Since that time, one of the women on the EM support

> group made the connection between EM and a condition

> in horses called Lamintis. . . Same symptoms. Except,

> in horses, they know it occurs after horses eat a

> particular grass that is high in amines. . . This

> creates an acidic system that prevents nutrients from

> being absorbed . . . Bingo! Many of the foods we eat

> are high in amines! . . . One EM lady has completely

> eliminated her symptoms by taking amines out of her

> diet.

>

> Magnesium provides the strength for bones while

> Calicum provides the density. . . They go together.

> Since starting this program, my bone density has

> improved to the extent that I no longer have

> osteopena. I'm taking Garden of Life Multi as well as

> their Calcium, plus a few other products.

>

> Five months ago, I was having a difficult time walking

> far enough to shop in stores the size of Walmart. I

> was wishing I had courage to ask for a power chair.

> Since starting on the naturopath's program, I'm doing

> fantastic. My muscles are sliding against each other,

> rather than sticking. I'm losing weight without

> effort. And, I'm feeling wonderfully energetic.

>

> Nevertheless, I would love to get off my sleep

> medication. However, until the day comes that I don't

> experience FM symptoms without a sleep medication, I

> think that it's a very small price to pay to

> experience freedom from pain.

>

> Rogene

November 23, 2004

Early on they gave me neurontin, and God, it was awful!!!!! I lasted 4

days. Then I refused to take anything for a long time. Nasty stuff.

Lynda

At 08:43 PM 11/22/2004, you wrote:

>Thank you for the information on Neurontin. I had heard something about

>Neurontin on

>NPR, but I didn't recall what exactly. I'm not surprised.... and I'm

>glad I'm not taking it.

>The pharmaceutical companies have turned into scumbags, and our government

>has

>encouraged it. It's frightening. Just recently, the NYT reported that

>today's FDA would not

>be able to stop drugs like Vioxx from entering and staying on the market.

>That's sad. And should ring alarm bells for us!

>

>Yes, we do need to research drugs. With any drug, there are bound to be

>tradeoffs.

>Plaquenil, which I take for lupus pain, can damage the retina - so I have

>to go to an

>opthamologist to have that monitored. But my mind is clear, whereas

>oxycodone sends

>me off the deep end. And, of course the pain meds treat symptoms and not the

>inflammation. But, after my experience this last year, I'm a lot more

>careful about what I

>take. Especially, now that we cannot trust the FDA to protect us from

>out-of-control

>pharmaceutical companies.

>

>Oh, btw, I am somewhat 'new' to this forum. I have had it bookmarked but

>haven't really

>explored it before. I felt a little odd here, because I had silicone and

>not saline implants.

>WEll, actually I had bilumin which were both. Maybe that's why I have

>been so sick?? who

>knows. I had the implants 20 years, and they were badly ruptured. I had

>been sick with

>rashes and nerve problems for several years but didn't know why.

>

>I am taking magnesium, as was suggested by a 'holistic' MD. I took what I

>could from his

>suggestions, and went back to my internist -- that is covered by my insurance!

>THe magnesium and vitamins have helped me. Magnesium is a biggee.

>But, it can also cause loose bowels, and I have had to be careful for that

>reason.

>

> > Molly, BTW, Welcome to the group! . . . You are new,

> > aren't you?

> >

> > Neurontin was developed for seizures . . . but turned

> > out not to be as good as products already available. .

> > . The manufacturer sent salesmen across the country

> > who, in some cases actually went into examining rooms

> > with the doctor, then stepped out in the hall and told

> > the doctor how much Neurontin to prescribe for almost

> > everything! . . . If the starting dose didn't work,

> > they were to double and redouble it. . .

> >

> > If the doctors prescribed enough Neurontin, they

> > received nice little trips. If they REALLY got on the

> > bandwagon, they were paid as speakers to other doctors

> > on these trips! Neuontin has been recommended to me

> > for at least four different reasons! To replace

> > Temazapam is only one.

> >

> > I have (had?) a condition called Erythromelalgia (EM).

> > It felt as though I was walking on hot pavement. After

> > thousands of dollars worth of fruitless tests, I found

> > the diagnosis on the web. . . And I found a support

> > group that was really gloomy! . . . All the suffer's

> > were getting worse and worse! The drug of choice for

> > EM is Neurontin! . . . Then a joined the group who

> > had had been completely disabled with EM for two

> > years. With his medical knowledge he started

> > researching the condition. He has since established a

> > Magnesium Research Institute.

> > http://www.magnesiumresearchlab.com/. According to

> > him, Magnesium is required for the body to produce

> > over 300 enzymes needed for health.

> >

> > Neurontin reduces nerve impulses at one level. . .

> > This inhibits the sensation of burning. However,

> > Neurontin also depletes Magnesium, which in turn

> > causes more burning. . . as well as a host of other

> > problems, including FM.

> >

> > The feds have fined the manufacturer's of Neurontin

> > $430,000,000 for the way they marketed the drug.

> > (Unfortunately other drugs are marketed this way too.)

> > There is a gathering class action suit against the

> > manufacturer's because an alarming number of patients

> > have either attempted, or committed suicide.

> >

> > I took information from the EM/Magnesium doctor to my

> > primary care doctor. She looked at it and saw that it

> > was primarily about nutrition. She recommended that I

> > see a local naturopath. After testing, he found my

> > system to be highly acidic. This put me at high risk

> > for cancer and kept me from getting the proper

> > nutrition from food and supplements. Unfortunately,

> > foods grown with modern farming methods produces food

> > that is seriously short of magnesium. As we get older,

> > we draw on the store of Magnesium in our bone and

> > muscle.

> >

> > Since that time, one of the women on the EM support

> > group made the connection between EM and a condition

> > in horses called Lamintis. . . Same symptoms. Except,

> > in horses, they know it occurs after horses eat a

> > particular grass that is high in amines. . . This

> > creates an acidic system that prevents nutrients from

> > being absorbed . . . Bingo! Many of the foods we eat

> > are high in amines! . . . One EM lady has completely

> > eliminated her symptoms by taking amines out of her

> > diet.

> >

> > Magnesium provides the strength for bones while

> > Calicum provides the density. . . They go together.

> > Since starting this program, my bone density has

> > improved to the extent that I no longer have

> > osteopena. I'm taking Garden of Life Multi as well as

> > their Calcium, plus a few other products.

> >

> > Five months ago, I was having a difficult time walking

> > far enough to shop in stores the size of Walmart. I

> > was wishing I had courage to ask for a power chair.

> > Since starting on the naturopath's program, I'm doing

> > fantastic. My muscles are sliding against each other,

> > rather than sticking. I'm losing weight without

> > effort. And, I'm feeling wonderfully energetic.

> >

> > Nevertheless, I would love to get off my sleep

> > medication. However, until the day comes that I don't

> > experience FM symptoms without a sleep medication, I

> > think that it's a very small price to pay to

> > experience freedom from pain.

> >

> > Rogene

>

November 23, 2004

Molly,

I'm glad you decided to join us! . . . The ladies here

are fantastic!

I had silicone gel implants too . . . 16 years. I

became chemically sensitive within months of getting

them . . . and went downhill from there. In fact,

quite a few of us had gel implants.

Our symptoms are very much the same as those with

saline, although, I think they have more problems with

toxic shock, bacterial/fungal issues.

We have more problems from silicone migration.

Wouldn't it be nice if they had told us the truth to

begin with?

According to the EM/magnesium doctor, the way you test

for a deficiency in magnesium is to take a heavy dose,

then do a 24 urine collection and check for the amount

of magnesium passed. The body keeps the magnesium it

needs, and passes the rest. . . In treating people

with magnesium deficiency, they gradually raise the

dose until diarrhea occurs, and continue backing off

each time diarrhea reoccurs. Dr. M went up to 13,000

gms, then backed off to 1000 for maintenance.

For those not into the more expensive

vitamins/minerals, Citracal is producing Calcium with

Magnesium in the correct ratio (2:1). I don't know

that the quality is as good as what I'm taking, but it

may be worth a try.

How are you feeling now?

Hugs,

Rogene

November 23, 2004

I lasted one day on that awful stuff. They ended up paying lots of money for that one. It's and anti-epiletic drug and they had the doctors prescribing it for everything! And the doctors just went along with it. Pathetic. Anita Re: Re: insomnia: Tips to help sleep, other than sleep meds Early on they gave me neurontin, and God, it was awful!!!!! I lasted 4 days. Then I refused to take anything for a long time. Nasty stuff.LyndaAt 08:43 PM 11/22/2004, you wrote:>Thank you for the information on Neurontin. I had heard something about >Neurontin on>NPR, but I didn't recall what exactly. I'm not surprised.... and I'm >glad I'm not taking it.>The pharmaceutical companies have turned into scumbags, and our government >has>encouraged it. It's frightening. Just recently, the NYT reported that >today's FDA would not>be able to stop drugs like Vioxx from entering and staying on the market.>That's sad. And should ring alarm bells for us!>>Yes, we do need to research drugs. With any drug, there are bound to be >tradeoffs.>Plaquenil, which I take for lupus pain, can damage the retina - so I have >to go to an>opthamologist to have that monitored. But my mind is clear, whereas >oxycodone sends>me off the deep end. And, of course the pain meds treat symptoms and not the>inflammation. But, after my experience this last year, I'm a lot more >careful about what I>take. Especially, now that we cannot trust the FDA to protect us from >out-of-control>pharmaceutical companies>>Oh, btw, I am somewhat 'new' to this forum. I have had it bookmarked but >haven't really>explored it before. I felt a little odd here, because I had silicone and >not saline implants.>WEll, actually I had bilumin which were both. Maybe that's why I have >been so sick?? who>knows. I had the implants 20 years, and they were badly ruptured. I had >been sick with>rashes and nerve problems for several years but didn't know why.>>I am taking magnesium, as was suggested by a 'holistic' MD. I took what I >could from his>suggestions, and went back to my internist -- that is covered by my insurance!>THe magnesium and vitamins have helped me. Magnesium is a biggee.>But, it can also cause loose bowels, and I have had to be careful for that >reason.>>>>> > Molly, BTW, Welcome to the group! . . . You are new,> > aren't you?> >> > Neurontin was developed for seizures . . . but turned> > out not to be as good as products already available. .> > . The manufacturer sent salesmen across the country> > who, in some cases actually went into examining rooms> > with the doctor, then stepped out in the hall and told> > the doctor how much Neurontin to prescribe for almost> > everything! . . . If the starting dose didn't work,> > they were to double and redouble it. . .> >> > If the doctors prescribed enough Neurontin, they> > received nice little trips. If they REALLY got on the> > bandwagon, they were paid as speakers to other doctors> > on these trips! Neuontin has been recommended to me> > for at least four different reasons! To replace> > Temazapam is only one.> >> > I have (had?) a condition called Erythromelalgia (EM).> > It felt as though I was walking on hot pavement. After> > thousands of dollars worth of fruitless tests, I found> > the diagnosis on the web. . . And I found a support> > group that was really gloomy! . . . All the suffer's> > were getting worse and worse! The drug of choice for> > EM is Neurontin! . . . Then a joined the group who> > had had been completely disabled with EM for two> > years. With his medical knowledge he started> > researching the condition. He has since established a> > Magnesium Research Institute.> > http://www.magnesiumresearchlab.com/. According to> > him, Magnesium is required for the body to produce> > over 300 enzymes needed for health.> >> > Neurontin reduces nerve impulses at one level. . .> > This inhibits the sensation of burning. However,> > Neurontin also depletes Magnesium, which in turn> > causes more burning . . as well as a host of other> > problems, including FM.> >> > The feds have fined the manufacturer's of Neurontin> > $430,000,000 for the way they marketed the drug.> > (Unfortunately other drugs are marketed this way too.)> > There is a gathering class action suit against the> > manufacturer's because an alarming number of patients> > have either attempted, or committed suicide.> >> > I took information from the EM/Magnesium doctor to my> > primary care doctor. She looked at it and saw that it> > was primarily about nutrition. She recommended that I> > see a local naturopath. After testing, he found my> > system to be highly acidic. This put me at high risk> > for cancer and kept me from getting the proper> > nutrition from food and supplements. Unfortunately,> > foods grown with modern farming methods produces food> > that is seriously short of magnesium. As we get older,> > we draw on the store of Magnesium in our bone and> > muscle.> >> > Since that time, one of the women on the EM support> > group made the connection between EM and a condition> > in horses called Lamintis. . . Same symptoms. Except,> > in horses, they know it occurs after horses eat a> > particular grass that is high in amines. . . This> > creates an acidic system that prevents nutrients from> > being absorbed . . . Bingo! Many of the foods we eat> > are high in amines! . . . One EM lady has completely> > eliminated her symptoms by taking amines out of her> > diet.> >> > Magnesium provides the strength for bones while> > Calicum provides the density. . . They go together.> > Since starting this program, my bone density has> > improved to the extent that I no longer have> > osteopena. I'm taking Garden of Life Multi as well as> > their Calcium, plus a few other products.> >> > Five months ago, I was having a difficult time walking> > far enough to shop in stores the size of Walmart. I> > was wishing I had courage to ask for a power chair.> > Since starting on the naturopath's program, I'm doing> > fantastic. My muscles are sliding against each other,> > rather than sticking. I'm losing weight without> > effort. And, I'm feeling wonderfully energetic.> >> > Nevertheless, I would love to get off my sleep> > medication. However, until the day comes that I don't> > experience FM symptoms without a sleep medication, I> > think that it's a very small price to pay to> > experience freedom from pain.> >> > Rogene>>>>>>>

November 23, 2004

Hi Rogene,

I'm glad I started coming. Beth told me about this site a long time ago, but I

didn't pay a

lot of attention because I had silicone and not saline! So I'm glad there are

others with the

silicone... Thanks!

I'm doing a lot better than I was. I first had MS symptoms in 1991, but never

considered

implants. Then in 1999, I had a mammogram, and it went down from there. A

neurologist I went to said one implant probably had been leaking for years, but

the

rupture was probably during my mammogram. That makes sense, because it was

after the

mammogram that I developed horrible rashes that would not go away! The worst

rash-

the one that itched and scarred - went away after explant.

Then I found out I had very high ANA (1:320) and was diagnosed with one

autoimmune

disease after another. Then the medication I was taking to sleep and for pain

sent me

spiraling down. So....it has been quite a year. Slowly starting to feel

better.

I'm taking magnesium, as I said. What you describe below is what I was told

also. The

problem I'm having is that there are about three things that could be causing

diarhhea...so

I've had to wait to increase the dose of magnesium.

M

> Molly,

>

> I'm glad you decided to join us! . . . The ladies here

> are fantastic!

>

> I had silicone gel implants too . . . 16 years. I

> became chemically sensitive within months of getting

> them . . . and went downhill from there. In fact,

> quite a few of us had gel implants.

>

> Our symptoms are very much the same as those with

> saline, although, I think they have more problems with

> toxic shock, bacterial/fungal issues.

>

> We have more problems from silicone migration.

> Wouldn't it be nice if they had told us the truth to

> begin with?

>

> According to the EM/magnesium doctor, the way you test

> for a deficiency in magnesium is to take a heavy dose,

> then do a 24 urine collection and check for the amount

> of magnesium passed. The body keeps the magnesium it

> needs, and passes the rest. . . In treating people

> with magnesium deficiency, they gradually raise the

> dose until diarrhea occurs, and continue backing off

> each time diarrhea reoccurs. Dr. M went up to 13,000

> gms, then backed off to 1000 for maintenance.

>

> For those not into the more expensive

> vitamins/minerals, Citracal is producing Calcium with

> Magnesium in the correct ratio (2:1). I don't know

> that the quality is as good as what I'm taking, but it

> may be worth a try.

>

> How are you feeling now?

>

> Hugs,

>

> Rogene

November 23, 2004

I am sure glad I did not take neurontin!

> > > Molly, BTW, Welcome to the group! . . . You are new,

> > > aren't you?

> > >

> > > Neurontin was developed for seizures . . . but turned

> > > out not to be as good as products already available. .

> > > . The manufacturer sent salesmen across the country

> > > who, in some cases actually went into examining rooms

> > > with the doctor, then stepped out in the hall and told

> > > the doctor how much Neurontin to prescribe for almost

> > > everything! . . . If the starting dose didn't work,

> > > they were to double and redouble it. . .

> > >

> > > If the doctors prescribed enough Neurontin, they

> > > received nice little trips. If they REALLY got on the

> > > bandwagon, they were paid as speakers to other doctors

> > > on these trips! Neuontin has been recommended to me

> > > for at least four different reasons! To replace

> > > Temazapam is only one.

> > >

> > > I have (had?) a condition called Erythromelalgia (EM).

> > > It felt as though I was walking on hot pavement. After

> > > thousands of dollars worth of fruitless tests, I found

> > > the diagnosis on the web. . . And I found a support

> > > group that was really gloomy! . . . All the suffer's

> > > were getting worse and worse! The drug of choice for

> > > EM is Neurontin! . . . Then a joined the group who

> > > had had been completely disabled with EM for two

> > > years. With his medical knowledge he started

> > > researching the condition. He has since established a

> > > Magnesium Research Institute.

> > > http://www.magnesiumresearchlab.com/. According to

> > > him, Magnesium is required for the body to produce

> > > over 300 enzymes needed for health.

> > >

> > > Neurontin reduces nerve impulses at one level. . .

> > > This inhibits the sensation of burning. However,

> > > Neurontin also depletes Magnesium, which in turn

> > > causes more burning. . . as well as a host of other

> > > problems, including FM.

> > >

> > > The feds have fined the manufacturer's of Neurontin

> > > $430,000,000 for the way they marketed the drug.

> > > (Unfortunately other drugs are marketed this way too.)

> > > There is a gathering class action suit against the

> > > manufacturer's because an alarming number of patients

> > > have either attempted, or committed suicide.

> > >

> > > I took information from the EM/Magnesium doctor to my

> > > primary care doctor. She looked at it and saw that it

> > > was primarily about nutrition. She recommended that I

> > > see a local naturopath. After testing, he found my

> > > system to be highly acidic. This put me at high risk

> > > for cancer and kept me from getting the proper

> > > nutrition from food and supplements. Unfortunately,

> > > foods grown with modern farming methods produces food

> > > that is seriously short of magnesium. As we get older,

> > > we draw on the store of Magnesium in our bone and

> > > muscle.

> > >

> > > Since that time, one of the women on the EM support

> > > group made the connection between EM and a condition

> > > in horses called Lamintis. . . Same symptoms. Except,

> > > in horses, they know it occurs after horses eat a

> > > particular grass that is high in amines. . . This

> > > creates an acidic system that prevents nutrients from

> > > being absorbed . . . Bingo! Many of the foods we eat

> > > are high in amines! . . . One EM lady has completely

> > > eliminated her symptoms by taking amines out of her

> > > diet.

> > >

> > > Magnesium provides the strength for bones while

> > > Calicum provides the density. . . They go together.

> > > Since starting this program, my bone density has

> > > improved to the extent that I no longer have

> > > osteopena. I'm taking Garden of Life Multi as well as

> > > their Calcium, plus a few other products.

> > >

> > > Five months ago, I was having a difficult time walking

> > > far enough to shop in stores the size of Walmart. I

> > > was wishing I had courage to ask for a power chair.

> > > Since starting on the naturopath's program, I'm doing

> > > fantastic. My muscles are sliding against each other,

> > > rather than sticking. I'm losing weight without

> > > effort. And, I'm feeling wonderfully energetic.

> > >

> > > Nevertheless, I would love to get off my sleep

> > > medication. However, until the day comes that I don't

> > > experience FM symptoms without a sleep medication, I

> > > think that it's a very small price to pay to

> > > experience freedom from pain.

> > >

> > > Rogene

> >

November 23, 2004

Awful drug!

Lynda

At 06:26 AM 11/23/2004, you wrote:

>I am sure glad I did not take neurontin!

>

> > > > Molly, BTW, Welcome to the group! . . . You are new,

> > > > aren't you?

> > > >

> > > > Neurontin was developed for seizures . . . but turned

> > > > out not to be as good as products already available. .

> > > > . The manufacturer sent salesmen across the country

> > > > who, in some cases actually went into examining rooms

> > > > with the doctor, then stepped out in the hall and told

> > > > the doctor how much Neurontin to prescribe for almost

> > > > everything! . . . If the starting dose didn't work,

> > > > they were to double and redouble it. . .

> > > >

> > > > If the doctors prescribed enough Neurontin, they

> > > > received nice little trips. If they REALLY got on the

> > > > bandwagon, they were paid as speakers to other doctors

> > > > on these trips! Neuontin has been recommended to me

> > > > for at least four different reasons! To replace

> > > > Temazapam is only one.

> > > >

> > > > I have (had?) a condition called Erythromelalgia (EM).

> > > > It felt as though I was walking on hot pavement. After

> > > > thousands of dollars worth of fruitless tests, I found

> > > > the diagnosis on the web. . . And I found a support

> > > > group that was really gloomy! . . . All the suffer's

> > > > were getting worse and worse! The drug of choice for

> > > > EM is Neurontin! . . . Then a joined the group who

> > > > had had been completely disabled with EM for two

> > > > years. With his medical knowledge he started

> > > > researching the condition. He has since established a

> > > > Magnesium Research Institute.

> > > >

> <http://www.magnesiumresearchlab.com/.>http://www.magnesiumresearchlab.com/.

> According to

> > > > him, Magnesium is required for the body to produce

> > > > over 300 enzymes needed for health.

> > > >

> > > > Neurontin reduces nerve impulses at one level. . .

> > > > This inhibits the sensation of burning. However,

> > > > Neurontin also depletes Magnesium, which in turn

> > > > causes more burning. . . as well as a host of other

> > > > problems, including FM.

> > > >

> > > > The feds have fined the manufacturer's of Neurontin

> > > > $430,000,000 for the way they marketed the drug.

> > > > (Unfortunately other drugs are marketed this way too.)

> > > > There is a gathering class action suit against the

> > > > manufacturer's because an alarming number of patients

> > > > have either attempted, or committed suicide.

> > > >

> > > > I took information from the EM/Magnesium doctor to my

> > > > primary care doctor. She looked at it and saw that it

> > > > was primarily about nutrition. She recommended that I

> > > > see a local naturopath. After testing, he found my

> > > > system to be highly acidic. This put me at high risk

> > > > for cancer and kept me from getting the proper

> > > > nutrition from food and supplements. Unfortunately,

> > > > foods grown with modern farming methods produces food

> > > > that is seriously short of magnesium. As we get older,

> > > > we draw on the store of Magnesium in our bone and

> > > > muscle.

> > > >

> > > > Since that time, one of the women on the EM support

> > > > group made the connection between EM and a condition

> > > > in horses called Lamintis. . . Same symptoms. Except,

> > > > in horses, they know it occurs after horses eat a

> > > > particular grass that is high in amines. . . This

> > > > creates an acidic system that prevents nutrients from

> > > > being absorbed . . . Bingo! Many of the foods we eat

> > > > are high in amines! . . . One EM lady has completely

> > > > eliminated her symptoms by taking amines out of her

> > > > diet.

> > > >

> > > > Magnesium provides the strength for bones while

> > > > Calicum provides the density. . . They go together.

> > > > Since starting this program, my bone density has

> > > > improved to the extent that I no longer have

> > > > osteopena. I'm taking Garden of Life Multi as well as

> > > > their Calcium, plus a few other products.

> > > >

> > > > Five months ago, I was having a difficult time walking

> > > > far enough to shop in stores the size of Walmart. I

> > > > was wishing I had courage to ask for a power chair.

> > > > Since starting on the naturopath's program, I'm doing

> > > > fantastic. My muscles are sliding against each other,

> > > > rather than sticking. I'm losing weight without

> > > > effort. And, I'm feeling wonderfully energetic.

> > > >

> > > > Nevertheless, I would love to get off my sleep

> > > > medication. However, until the day comes that I don't

> > > > experience FM symptoms without a sleep medication, I

> > > > think that it's a very small price to pay to

> > > > experience freedom from pain.

> > > >

> > > > Rogene

> > >

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