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In a message dated 8/6/01 2:25:49 PM Pacific Daylight Time, mokie@...

writes:

<< Is not being able to sleep a part of RP? I' >>

Ann, I wish I knew the answer to that... They just keep telling me that my

sleep center is all messed up... I am on a c-pap machine and have tried every

sleeping pill out there. Have tried antidepressants and so far the only

thing that will give me 3-4 hours of sleep is xanax. Without it I would

stay up forever and not ever feel sleepy..tired yes, but not sleepy...

wish I could be of more help...

hugs

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le, thanks for the info... I also have fibro and the interfers with

sleep too. I had 2 sleep studies done and can't get to stage 3 or 4 sleep.

So I'm always tired... will give anything a try. Thanks again.

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Hello Everyone, I've been reading the posts and everyone seems to be

having trouble sleeping. I have this problem also. Since I've only

been diagnosed for a couple of weeks I'm still learning whats what

with this RP. My PCP knows nothing about it.Anyways my question is.

Is not being able to sleep a part of RP? I'm not on any meds. right

now excet I take ibuprofen a couple times a day to keep the flaring

down some. And of course my synthriod, for hypothyroidism. I have an

appointment at the Cleveland Clinic but it isn't until the end of the

month. Thanks, Ann

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Ann,

Good afternoon! I think the reason that a lot of the people in the group can't sleep is due to the meds that they take. I used to hate it when I was on the pred. I am a night owl by nature!LOL I am a person who only requires a few hours of sleep and I am ready to go again.LOL

Take care and hope others have a better answer. I take you are having trouble sleeping also?

Lots of Love

Glenda

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.265 / Virus Database: 137 - Release Date: 7/18/2001

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Hi All,

I have noticed alot of posts about lack of sleep, and for me I think

it might be the rp or dealing with the diagnosis. I never had a

problem sleeping until this last 2 yrs, when the rp has accelerated.

Melatonin, which is supposed to help sleep, didn't work for me, it did

the opposite, felt like I was on Pred!! I wanted to get up at 3.00am

and clean.

Purely by accident I found this Herbal Blend at Walgreens (their

generic brand - Finest Natural) called Relax Tension. I don't know why

I tried it, but boy did it work for me. I took it about 2 hrs before

I knew I was going to sleep, and I felt so relaxed and sleepy that it

helped me get some sleep. I may not sleep all the night through, but

the sleep I do get is deep, and I don't feel as tired. I found as I

used it over time, it worked better.

Hope this helps someone

le

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Ann,

I have trouble sleeping but it is due to the Pred. and I also have Fibromyalgia which causes sleep disorder.

Sandy

Hello Everyone, I've been reading the posts and everyone seems to be having trouble sleeping. I have this problem also. Since I've only been diagnosed for a couple of weeks I'm still learning whats what with this RP. My PCP knows nothing about it.Anyways my question is. Is not being able to sleep a part of RP? I'm not on any meds. right now excet I take ibuprofen a couple times a day to keep the flaring down some. And of course my synthriod, for hypothyroidism. I have an appointment at the Cleveland Clinic but it isn't until the end of the month. Thanks, AnnDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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Hi,

I have trouble sleeping. I was on Ambien and switched to Trazodone.

I then went back to Ambien. It works well for me. I think my sister

takes trazadone.I also have fribro.

I know if I don't get enough sleep at night it can bring on a flare

up.

Sandy Catalusci wrote:

Ann, I

have trouble sleeping but it is due to the Pred. and I also have Fibromyalgia

which causes sleep disorder. Sandy

Hello

Everyone, I've been reading the posts and everyone seems to be

having trouble sleeping. I have this problem also. Since I've only

been diagnosed for a couple of weeks I'm still learning whats what

with this RP. My PCP knows nothing about it.Anyways my question

is.

Is not being able to sleep a part of RP? I'm not on any meds. right

now excet I take ibuprofen a couple times a day to keep the flaring

down some. And of course my synthriod, for hypothyroidism. I have

an

appointment at the Cleveland Clinic but it isn't until the end

of the

month. Thanks, Ann

DISCLAIMER!!

WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT

IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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,

I was on Trazadone for several months. It does work well except it made me feel drugged until lunch time. I am now on 25mg. of Elavil at night but it does not work as well for me.

Hugs,

Sandy

Hi, I have trouble sleeping. I was on Ambien and switched to Trazodone. I then went back to Ambien. It works well for me. I think my sister takes trazadone.I also have fribro. I know if I don't get enough sleep at night it can bring on a flare up. Sandy Catalusci wrote:

Ann, I have trouble sleeping but it is due to the Pred. and I also have Fibromyalgia which causes sleep disorder. Sandy Hello Everyone, I've been reading the posts and everyone seems to be having trouble sleeping. I have this problem also. Since I've only been diagnosed for a couple of weeks I'm still learning whats what with this RP. My PCP knows nothing about it.Anyways my question is. Is not being able to sleep a part of RP? I'm not on any meds. right now excet I take ibuprofen a couple times a day to keep the flaring down some. And of course my synthriod, for hypothyroidism. I have an appointment at the Cleveland Clinic but it isn't until the end of the month. Thanks, Ann DISCLAIMER!! WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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  • 2 weeks later...

..Anyways my question is. Is not being able to sleep a part of RP?

well, I think the steriod use makes you not able to sleep, among other things but I take ambien and it knocks me out and I don't have the hang over feeling the next day. I love the stuff. lol

Lu

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Hi le,

No, I take one every night. I even talked to the doctor and the pharmacy about doing this. They both told me it was perfectly okay. It works for me and my quality of sleep is so much better. So that helps out all the way around. Have a great weekend.

Take care,

Love

Lu

How are you doing? I also take ambien. Do you find sometimes, if you take it for a long time you get dizzy and feel very light-headed when you wake up? I only take it occasionally, I try not to take it all the time.

Have a great weekend :)

le

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Hi Ann,

I think that is what they told most all of the doctors. So, we got our illness ignored they didn't learn what they should have about it. That's why this foundation is so important. We need people to join and get contributions from family and friends. We have to get awareness out there to the medical community as well as to the patients. I hope you start feeling better soon. I've been flaring some lately, but this too shall pass.

love,

Lu

When they had this in med school the instructor told them not to worry about learning about RP because they would never get a patient with it.SURPRISE! SURPRISE!

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ambien

Hi- I've been taking ambien for 3 years..I think it's the greatest invention since the wheel. LOL I take it 5 minutes before my head hits the pillow...I don't think I ever lie there more than 5 mins and I'm asleep. and like you said no hangover...its great..prior to taking it I would toss and turn until 2-3 am and finally fall asleep. Anyone who is having trouble falling asleep should try it. Janet

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> well, I think the steriod use makes you not able to sleep, among

other things

> but I take ambien and it knocks me out and I don't have the hang

over feeling

> the next day. I love the stuff. lol

> Lu

Hi Lu,

How are you doing? I also take ambien. Do you find sometimes, if you

take it for a long time you get dizzy and feel very light-headed when

you wake up? I only take it occasionally, I try not to take it all the

time.

Have a great weekend :)

le

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Lu, Thanks for the information. I'll try ambien, I'm not on steriods. Thats the reason I thought maybe RP had something to do with it.Can't get in to see the rhume. until the 29th. I'm having one flare after another. Today had to go see the eye doctor.Woke up and my eye was giving me fits. I have blepharitis. My PCP said he doesn't know what to do for me.When they had this in med school the instructor told them not to worry about learning about RP because they would never get a patient with it.SURPRISE! SURPRISE! He's on vacation now said he would go to the medical library to see if he could find anything out. At least he's willing to learn. Sorry two or three topics all in one . Thanks again, Ann

Re: Can't Sleep

..Anyways my question is. Is not being able to sleep a part of RP?well, I think the steriod use makes you not able to sleep, among other things but I take ambien and it knocks me out and I don't have the hang over feeling the next day. I love the stuff. lol Lu DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

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