sleep thief, LIFE THIEF!!!!

For everything and anything else not covered in the other WED/RLS sections.
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lyndarae
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sleep thief, LIFE THIEF!!!!

Postby lyndarae » Thu Aug 05, 2004 5:28 pm

I ordered the book SLEEP THIEF, I was just glancing at one page on my way out of the mall this is the first thing I read. Rls does not kill people as do cancer and heart diseases, but in serious cases, it kills the physical,social, and familial lives of all who are unlucky enough to be so plagued. Im telling you I was crying before I even got out of the mall.I tried to get home my feet were cramping so bad I could not keep my feet on the pedels. If there would have been a cliff in front of me I would have driven off it. I am so ANGRY!!! I have beenseeing ssing a np for over a year now and spent over 2 thousand dollars, and nothing has changed. I got the results of my blood work my iron is fine.I wanted it to be BAD!!! that way I could be fixed!!! MY mind has left the building, The np refuses to give me klonapin because of my alcoholism. I have been sober for 16 months and havent had a nights sleep since. I wonder if she knows that my alcoholism started because I couldnt sleep!!! I know now that I drank to SLEEP!!!! Today I found a sleep center 20 miles fom home in a town that my np is from, DAH I guess she didnt know about that place,,,I called I told them my story they said we know all about rls, you must be misrable I wanted to reach through the phone and hug her yeah I said I dont feel to good. Come in on wed the 11th she said and dont worry about the fee we work with people with no insurance and we will work with you on a sliding scale. I feel like I had talked to god himself... Praise the lord, he heard my prayers cause I am telling you all yesterday I was thinking I could not gone on another day. She said you just hang in there and we will see you soon. I think I see a light, thanks for letting me vent and I will keep you posted any ideas on what I should bring with me to the appointment or things I should tell the doc would be appreicated. thanks soooo much for being here Lyndarae[/i]

claradragon
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hi

Postby claradragon » Thu Aug 05, 2004 6:01 pm

I'm glad to hear you sounding more positive about getting help...and the acoholism, it does make you see it in a different light when you understand more of what is going on with rls doesn't it?

Sole
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Postby Sole » Thu Aug 05, 2004 7:36 pm

Lyndarae,

So happy to hear you may have found the help you need. Please let us know how your appointment goes. The RLS roller coaster can be so discouraging at times. But when you find relief, it's sooooo wonderful.

Stay strong.
Sole

"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

Anonymous

I understand...

Postby Anonymous » Thu Aug 05, 2004 7:57 pm

My Daddy would drink in order to deal with the RLS.

I just wanted to tell you about that so you would know someone understands. My Dad never knew what caused his leg proplems, but he tried to deal with it the best he could, and drinking was one way he tried to escape the "pain" of being kept awake when he was exhausted.

(((hugs))) to you...and don't give up. You're not alone. Take one good look at this message board and you'll see you aren't alone.

Come here and chat if you feel overwhelmed by RLS. At least you'll know you can find people who understand, okay?

Hugs,

Rita

becat
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Your still on the right track

Postby becat » Thu Aug 05, 2004 8:23 pm

Hi Lyndarae,
I have to say go for you........you still did not give up or give in. Your fighting and that my dear is a great thing. You are not going to have to wait long now. Take a deep breath and you'll make it. It's going to better now that you'll found the right people to work with.
Prays and thoughts of peace be with you.

jumpyowl
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Help me so I can help you

Postby jumpyowl » Thu Aug 05, 2004 8:50 pm

Lyndarae; I am glad you found some one. I would like to help you with some ammunition you could take to your new place. My time is really limited so if you could answer the following questions it would help me to make some suggestions.

How long have you been aware of having RLS?

What are your symptoms? Paresthesia only (describe the feeling)
Paresthesia with pain
Periodic limb movement at night
Anything else

What medications have you taken chronologically and with what effect
(please give me the doses please)?

What is you major complaint (morbidity)? I assume lack of sleep!

BTW give me all the medications if you have taken them during the same time for each period. Most important are the medications in the last six months.
Jumpy Owl

guest

profile

Postby guest » Thu Aug 05, 2004 9:46 pm

female
50
Rls aware of it since 10 years old
creepy crawless in feet all the time 24/7 pain getting worse In legs aches all the time heat helps alot I have heating mattress I usr every night, fells like I am walking on oval stones like the size of a radish cold feet even with socks even in the hotest days of summer. bolts shoot through my legs like I am getting shocked from an outlet, cant hold still got to move feet and legs cant have anything touch my feet or legs cold legs gets worse when its cold painful in the winter somtimes I can see my skin jumping up and down when I am trying to read I look at my legs and cant see it moving lots of cramps where my toes spread way out ouch!!!!!Right ear will not stop feeling like my feet ants or feeling of earwig in the ear jerking in the night got to move leg and kick it out and of course NO sleep
somtimes I sleep 2 hours but never more than that at a time

MIRAPEX 0.25mg at bed time 1 a day on bad days I take more this has all but stopped the jerking thing that happens at night but has not touched any other of my symptom

Synthroid 0.075 mg 1 in the morning blood work just showed i need to up this med to 0.088mg


Sonata 5mg took for 5 nights and then threw them out they made me hyper

Tizanidine 4mg zanaflex these are helping me fall asleep but not stay that way they seems to calm the attacks



the last 6months all of the above and requip 0.25mg did not take long enough to tell anything

ambeian 2mg for sleep help a little doc gave me 30 and no more


Hope this will help thanks alot for your time jumpyowl Lyndarae


Sorry about the typing bugs are really crawling today!!!!!

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jan3213
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Good for you!!!

Postby jan3213 » Fri Aug 06, 2004 2:32 am

Lyndarae

Hi, This is Jan

I just wanted to send you some (((hugs))) and let you know that my neurologist told me that he thought years ago many people self-medicated by drinking. Sometimes, you do what you have to do when you don't know what else to do. Did that make sense? I know exactly what you mean when you say it's now cancer, etc., but it DOES rob you of a normal life and most people who don't have RLS don't understand, but WE DO!!! Anyway, I'm glad you found a doctor. AND I'm glad you found us!! As Sole, Clara, Fussybird and Becat all said, when you feel the need, talk to any of us anytime. That's what we're here for, and Jumpy is a great source!! He's a wonder!! This is a great place full of wonderful people who are going through what you are, so we understand and WILL LISTEN!!!! Take care! Don't forget--we're all here for you!!

Jan

jumpyowl
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I shall try:

Postby jumpyowl » Fri Aug 06, 2004 8:00 pm

You wrote:
I have been RLS aware of it since 10 years old.

Creepy crawless in feet all the time 24/7 pain getting worse. Electric bolts shoot through my legs like I am getting shocked from an outlet, cant hold still got to move feet and legs, cant have anything touch my feet or legs cold legs gets worse when its cold painful in the winter somtimes I can see my skin jumping up and down when I am trying to read I look at my legs and can see it moving lots of cramps where my toes spread way out ouch

Right ear will not stop feeling like my feet ants or feeling of earwig in the ear jerking in the night got to move leg and kick it out and of course NO sleep. Sometimes I sleep 2 hours but never more than that at a time

MIRAPEX 0.25mg at bed time 1 a day on bad days I take more this has all but stopped the jerking thing that happens at night but has not touched any other of my symptom

Synthroid 0.075 mg 1 in the morning blood work just showed i need to up this med to 0.088mg

Sonata 5mg took for 5 nights and then threw them out they made me hyper

Tizanidine 4mg (zanaflex) these are helping me fall asleep but not stay that way they seems to calm the attacks

the last 6 months all of the above and requip 0.25mg did not take long enough to tell anything

ambien 2mg for sleep help a little doc gave me 30 and no more



You somehow have to convey to the doctor:

You are in constant pain and have problems both falling and remaining asleep.

You are taking two dopamine agonists (the nonergotic type) as you have paresthesia that ceases with movement. That seems to help with paresthesia. However, you also have electric shock type of symptoms, your legs and feet feel cold (Reynolds sydrome?)

Tizanidine ( a muscle relaxant) has a calming effect and helps falling asleep.

You were prescribed Ambien and Sonata. The first helped, the second backfired (actually made you hyper).

Tell the doctor that if they could control your pain (some of it possibly neuralgia or peripheral nerve pain) that you probably could fall asleep and stay asleep. ( Neurontin and Ultram come to mind.)

However, they should reconsider ambien as it was among the medication that were useful.

Tell the doctor that both opioids and tranquilizers seem to help with RLS in generaL You are not taking either. Ambien they do not wnt to prescribe and Sonata disagrees with you.

Yours could have a refractory type RLS (see Algorihtm for RLS) complicated with something else.

The doctor would probably suggest a sleep test. Go for it.
Last edited by jumpyowl on Fri Aug 06, 2004 11:44 pm, edited 1 time in total.
Jumpy Owl

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Rubyslipper
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Postby Rubyslipper » Fri Aug 06, 2004 11:21 pm

What a fighter you must be and determined as well to keep hanging in there despite your problems. Take a look at yourself and see how strong you are. You will find help here and support. Please use it to help during the bad times. I know (we all do) how terrible it is to walk the floors, needing sleep and rest, dreading the next day because you are so tired and dreading even more the next night. Depression sets in easily and makes it so hard to concentrate. When things are at the worst, its so easy to try ANYTHING that might help. You are among friends here and we feel for you. Let us help you and someday things will be better. Bet you will be here for us, right? Take care and hang in there.

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lyndarae
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Postby lyndarae » Fri Aug 06, 2004 11:58 pm

Rubyslipper, What a nice thing to say to me! I never see myself as a stong person. I think I am a wimp, when I cry at night from the pain, confusion and lonelyness I just feel worse for being a cry baby. This rls sucks, and I really dont know what is worse worrying about keeping your family awake or wishing someone was here at night with me. It seems sooo much lonelyer (spell) at night ya know, I cant even imagine trying to meet someone new and get in any kind of relationship with this going on in my life.I dont know guess Im just feeling sorry for myself now.

Thanks to you to Jumpy for the infor to take to the sleep clinic I would just love to have a sleep study done. But I dont have any insurance I dont even have a guess at what something like that would cost, any ideas??
And this is totally off the subject but you all are my friends RIGHT!!! plEASE TELL ME HOW TO INCLUDE MY SMILEYS
When I try to use them like for the happy one I click it and the word HAPPY comes up and so forth. I cant find a place to help me with this. I want to have fun with them too thank you all Lyndarae

jumpyowl
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You are welcome, Lyn:

Postby jumpyowl » Sat Aug 07, 2004 7:06 am

The emoticons are easy. You should have your cursor (the blinking little line) at the place you want them. You place it over the emoticon (this is when the word appear - like smile). Then left click. Something will come up on the screen like a column sign and a right parenthesis. The real picture will come up after you submit your post.

Sleep study is expensive, probably over one thousand dollars. But keep in mind that nowadays all these costs are inflated because Medicare, Medicaid, and large insurance companies always pay a much lower fee (usually go by percentage). For a private person you can negotiate a much lower price. Not only that but in certain hospitals they have a budget helping people of need. Good luck. :)

Sleep study is useful because they can diagnose all kinds of problems from the poysomnogram. I posted quite a bit on that probably on the narcolepsy topic. (if you cannot find it I will try to find the link).

If any question occurs to you prior to your visit please let me know in time. Your pain has to be controlled so they may send you to a pain clinic. They worry about your history but if someone can make them realize that people in real pain usually do not get hooked on drugs, and you became an alcoholic to escape pain because no other means was available to you, perhaps you can obtain the help an enlightened doctor.

Am I spelling your first name right?

Let us know how you make out at the new doctor.

Fondly,
Jumpy Owl

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what do you think

Postby Guest » Sat Aug 07, 2004 10:31 am

hey JumpyOwl, I think I want to ask the doc for klonapin. I was first treated for the rls in 87 and they put me on klonapin. It worked great for mr without any side effects.and I slept really good!! The problem was I was still drinking then and I ended up abusing it. Today I am in a new place I dont want to get high I just want to sleep and get a little relief from the pain. I guess I want this med cause I know it worked for me, Im so tired of the hit and miss thing and my money has run out.But Im thinking I might need something for pain too. I just want to have all my ducks in a row when I go in but I dont want them to think Im telling them what to do. It is such a fine line.They sent a long history form for me to feel out I did it with my sister, she was a great help and she is learning more about what is going on with me. She even took home my copy of sleep theif to read. :lol: I hope that worked.I have until wed the 11th to get ready for this. I want to go in feeling strong not despret(spell) I am using these days to get somthing together. Thanks for your help and support it means alot to me Ya mine name is spelled Lyndarae, the Gals have shortened it to lyn that works for me... Well its almost dawn maybe I can sleep a little now. THANKS AGAIN AND AGAIN lyndarae

jumpyowl
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Hello, Lyndarae:

Postby jumpyowl » Sat Aug 07, 2004 4:19 pm

I slept between 5 am and 10 am, I hope you did, too.

You wrote:
I want to ask the doc for klonopin. I was first treated for the rls in 87 and they put me on klonapin. It worked great for mr without any side effects.and I slept really good!! The problem was I was still drinking then and I ended up abusing it.


As you know, klonopin is a sedative with a long half life. So if you go to work next morning it is not so good. But again it is up to the individual. I take it occasionally when my pulse rate is high and beta blockers do not affect it.

I guess I want this med cause I know it worked for me,

Keep in mind it worked for you so well in 1987 because you drank alcohol with it. It enhances the sedative effect as alcohol is also a sedative.

Klonopin will work for you, though. The problem is to get it legally. There are at least two possibilities.

1. you switch to a shorter acting sedative such as Lorazepam. It worked for me fine and is less addictive than klonopin.

2. take a character witness with you or a letter (affidavit) from them. Such as your sister, a clergy man a social worker, anyone who followed your progress lately. That may help you to get Klonopin.

Now this is for the sedative.
But Im thinking I might need something for pain too

I agree! You also need something for the pain. I mentioned Ultram (or hydrocodone 10/325). Ultram is not an opioid and seems to work well with RLS patients.

I am glad your sister is on your side. It is important to communicate your side calmly and seriously. Yes, you should not appear desperate but let them know that you are suffering and still kept away from alcohol for 15 months!!!

Have you tried the emoticons? :)
Jumpy Owl

Guest

help

Postby Guest » Sat Aug 07, 2004 7:18 pm

hey Its lyndarae Iam having an attack can anyone go to chat room please I need some help or i am going to the er. I will hang as long as i can thank you


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