Re: EDS & Sleep

[Guest guest]

Yes Crystal, sleep is an issue for many. Just last night, Dylan never went to

sleep.

His pattern is that often the second night he won't sleep either. Then he will

sleep for 18 hours. Seems to happen every 1-3 weeks. He has asked Doctors for

help with sleep at every visit for a year now, but no help yet. The everyday

sleep is hard for him too. He'll turn off the lights and TV and lay awake for

hours everynight. Docs refuse to give him anything to help due to his everyday

meds. They have said he can take Benadryl but that doesn't help. When there is

no sleep, the pain increases. Those are always the days that I hear... leave me

alone. No suggestions here, but you are not alone. :~(

Cindylouwho

EDS & Sleep

Sorry guys I have been so full of questions lately. But my question

is does anyone have any kind of sleep disorder or is taking anything

to help them sleep. i have trouble at night going to bed and when i

do go to bed i mind goes wild plus pain usually keeps me awake. Then

as if EDS does not wear you out enough i am so wore out during the

day i am able to take naps durring the day. But that does not work

with my schedual at all. I seem to sleep better durring the sunny

days laying in the sunlight by a window i think it's the warm heat

helps loosen my joints and I've tried heated blankets and stuff at

night but it doesnt work either. I have been on ambien for the past 2

years and it doesnt work. and over the counter drugs have no effect

on me. I never use to have this problem but a littl;e over 2 years

ago i had rods put in my spin and i was in such pain the Dr over

dosed me on morphine something awful for 2 days I slept and

hulusinated which I dont remeber. But since then I have never been

able to fall asleep until I'm just so exausted i cant handel it. I

just woundrerd if anyone else ever had a similar problem or had a

suggestion.

Thanks

Crystal

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

[Guest guest]

My 17 year old son with EDS has sleep issues that are different than

mine, but we both have gotten treatment that that has been effective

after getting a sleep study evaluation. has changing patterns

of sleep needs too, and has to live around them, but the Melatonin

3mg he takes does seem to work for him. He had been taking Trazadone

for sleep in the past, but after reading about the side effects and

possible damages resulting from this med we took him off and

increased the Melatonin until it was effective for a restful night's

sleep.

As for myself, having inoperable herniated discs and Fibro/CFS, my

sleep study indicated a problem I was completely unaware of at the

time. It was Periodic Limb Movement Disorder (PLMD). Doctors and

others tend to mix this up with Restless Leg Syndrome(RLS. The

treatment is the same for both, a muscle relaxer; Klonopin. There

are side effects and possible damages to consider too. It made a

huge difference for me for a few years now. Unfortunately, another

disease (yet to be officially diagnosed) caught up to me recently

that causes excessive daytime and early evening fatigue that forces

me to take a couple of naps a day. Another medication has helped

with the fatigue; Provigil. It's very expensive and I save them for

days when I have to go places in the evenings.

Hope this helps someone,

~Duv

[Guest guest]

My 17 year old son with EDS has sleep issues that are different than

mine, but we both have gotten treatment that that has been effective

after getting a sleep study evaluation. has changing patterns

of sleep needs too, and has to live around them, but the Melatonin

3mg he takes does seem to work for him. He had been taking Trazadone

for sleep in the past, but after reading about the side effects and

possible damages resulting from this med we took him off and

increased the Melatonin until it was effective for a restful night's

sleep.

As for myself, having inoperable herniated discs and Fibro/CFS, my

sleep study indicated a problem I was completely unaware of at the

time. It was Periodic Limb Movement Disorder (PLMD). Doctors and

others tend to mix this up with Restless Leg Syndrome(RLS. The

treatment is the same for both, a muscle relaxer; Klonopin. There

are side effects and possible damages to consider too. It made a

huge difference for me for a few years now. Unfortunately, another

disease (yet to be officially diagnosed) caught up to me recently

that causes excessive daytime and early evening fatigue that forces

me to take a couple of naps a day. Another medication has helped

with the fatigue; Provigil. It's very expensive and I save them for

days when I have to go places in the evenings.

Hope this helps someone,

~Duv

[Guest guest]

My 17 year old son with EDS has sleep issues that are different than

mine, but we both have gotten treatment that that has been effective

after getting a sleep study evaluation. has changing patterns

of sleep needs too, and has to live around them, but the Melatonin

3mg he takes does seem to work for him. He had been taking Trazadone

for sleep in the past, but after reading about the side effects and

possible damages resulting from this med we took him off and

increased the Melatonin until it was effective for a restful night's

sleep.

As for myself, having inoperable herniated discs and Fibro/CFS, my

sleep study indicated a problem I was completely unaware of at the

time. It was Periodic Limb Movement Disorder (PLMD). Doctors and

others tend to mix this up with Restless Leg Syndrome(RLS. The

treatment is the same for both, a muscle relaxer; Klonopin. There

are side effects and possible damages to consider too. It made a

huge difference for me for a few years now. Unfortunately, another

disease (yet to be officially diagnosed) caught up to me recently

that causes excessive daytime and early evening fatigue that forces

me to take a couple of naps a day. Another medication has helped

with the fatigue; Provigil. It's very expensive and I save them for

days when I have to go places in the evenings.

Hope this helps someone,

~Duv