sleep thief, LIFE THIEF!!!!

[bradyferguson]

bye

[lyndarae]

HEY EVERYONE!!! I have been reading all the posts but havent had much to say for myself lately. Welcome to all the new commers you have found the right place Jumpyuowl it's so good to read your posts again.I have been so busy trying to handle work Im now on graveyard shift and hating it. But I think something in a new direction might be comeing my way!!! Fingers are crossed and lots of prayers too!!! The doc has put me back on neurontin low dose of 300mg at bedtime it hasent been two weeks yet but so far no difference.The creepies are driving me mad. 24/7!!!! But I am sleeping or trying to during the day since I cant sleep at work!!! I tried to sleep today with no luck I have to be at work in 1 hour at 11:30pm till 7:30 am. I'm tired and am worried about staying awake. But I'm going to do my best. Hope everyone is doing well. I have missed you all and just am doing my best to hang in there. I dont think the neurontin is working and I don't know where we will go next but~~~~~~~~~~~ Life goes on and so will I LOve and higs to all~~~~~~~~~Lyndarae

[jan3213]

Hi, it's Jan

I've missed you Lyn!! I'm so glad to hear from you! I've been busy, too, and haven't contacted you--life gets in the way sometimes, doesn't it??

You sound so positive about your future!! That's GREAT!

Sorry about your present job. And sorry, you're not sleeping again. I hope they can find the right medication to help you, SOON!!

Please know that we're always here for you (I AM LYN), and I hope that you have a great Christmas. I'm anxious to hear what may come your way. I've got all my fingers and toes crossed for you!! And, I'll say a pray or two!!

Love you,

Jan

[lyndarae]

HEY ALL, Just got in from a long night at work. Im going to try and get some ZZZZZs before I go to the doc at 10:00 I was wondering if anyone could tell me if they hasve tried MADOPAR????? I was reading about it and I have tried the Mirapex and nuerontin and requip Im just wondering if anyone has any advice before I go to the doc THANKS ~~~~~~~~~lyndarae

[cornelia]

I did, Lyndarae, but it didn't do a thing. If I'm not mistaken it is something like Sinemet. Not suitable for you, I should say, with bad RLS.
For 24/7 RLS like yours Cabergoline could be an option, but I learn that it is not used for RLS in the USA. But in Australia and the UK it is. It works much and much longer than the other DA's (half life 65 hours or so).
Maybe you can ask your doc if you can be the first woman in the USA to try it , you can then call yourself first lady!
Good luck.
Corrie

[lyndarae]

Hey Corrie, Well thanks for the info, I think Im going to tell the doc just to leave things the way they are until after the holidays. I'm just too tired today to think straight enough to tell her what I want and I don't want to be talked into anything so......Are you from Australia Corrie?? I lived in Adelaide for 3 years and will never forget it I would go back there and live forever if I could make it own my own there??? Maybe you might know of a nice aussie bloke looking for an american beauty!!!!! lol I was never as spititual as I was in the land downunder. Anyway I'm day dreaming now must not keep my gatekeeper waiting...~~~~~~~~~~~~~lyndarae Thanks again I will be doing my research this week!!!!! Ta

[cornelia]

No Lyndarae, I'm from The Netherlands (Europe), the tulip country, with Amsterdam as capital.
This is it for today because today I got up with no energy at all. I'm going to indulge myself with some Tramadol drops to give me some energy.
BTW: you and others talk about graveyard shifts: does it mean you are working at night and what has that to do with cementaries?
Bye for now, Corrie

[lyndarae]

Hey Corrie, Yes I work graveyards from 11:30pm till 7:30am And I have no idea why it's call that I have wondered that myself. Maybe because it a time when most people(those without RLS ARE SLEEPING). You know how us americans have odd sayings for things well that is just one of many. The doc uped my neurontin to 600mg 1 and bedtime. This is still a very low dosage so I'm hoping I will see some better results. I do know that it is really knocking me out at bedtime and I was a bit surpised by that. Some people say that it helps them sleep so we shall see. So how are you doing you sais you didnt have any engery whats up with that? Well gotta go I have to be to work at 8:30 tonight cause they need someone to come in early~~~~~~~~~~~~~~~~~~~~~Lyndarae

[sthomp66]

Corrie - Hi, this is shelley. I'm fairly newto the site and I've found it very interesting reading everyones posts. I'm curious about Tramadol drops. Exactly what is that? I've taken Tramadol for the past 10 yrs or so and it still works for my "crazy legs". Of course I started taking one pill in the early evening to two pills three times a day. I've never heard of drops though. Do you get the same relief as the pill form, or does it work faster since it's liquid?

Lyndarae - I just read your posts going back to the beginning. I have to tell you that I recently found out who I got my RLS from. From talking to my grandparents, my fathers behavior as a child and early adult period mirrored mine, all the way down to running, taking hot baths, stretching during all hours of the night. My parents divorced when I was two, and I was raised by my mother and step-father. For the longest time, since I was the only person in my family that had this (so I thought) I truely believed I was crazy. The reason I'm sharing this with you is because later in life my brother and I were told about my fathers drinking and drug addictions. I would give anything to be able to talk with him about RLS. I guarantee he didn't know what it was and I'm also convinced drugs and alcohol are what he used to mask the feelings that were going through his legs. Unfortunately he's dead now from a drug overdose that lead to heart failure. So, I guess my point is that to those who suffer with this horrible ailment, it is life threatening, just like Cancer or any other fatal disease. To me, if you have Cancer you at least know what it is and the ways to treat/cure it. I dont' think regular people understand how frustrating it is to have something that's damn near unexplainable unless you yourself have experienced it. How frustrating it is to sit in front of a dr. and explain the unexplainble without them thinking you're just there to score some pain medicine to feed your druge habits. I tried to tell my grandmother and grandfather I don't drink, never have. I don't smoke and never have. I had never had anything in my body more powerful than ibuprofin. However, if I was unable to get medication to treat my RLS I would have thrown myself off the roof of a very tall building. Or....what my father did, seek alcohol and/or drugs the alleviate the insanity I was feeling. I tried to reassure my grandmother that her son wasn't weak or a bad person for the lifestyle he chose, because he didn't choose, it chose him. By the end of our conversation over the phone (I'm in Missouri, they're in Texas) my grandmother, grandfather and I were bawling. It was absolutely heartbreaking to ponder what could have been if they'd only known. What a different path my father might have chosen to attain the quality of life that we all deserve. I do hope you get to a place soon where you can recapture the quality of life you deserve.

Shelley

[cornelia]

Hi Shelley,

Tramadol drops work just exactly like pills, only if at times you don't need a 50mg pill but less, you are able to do that. 1 Drop = 2 1/2 mg. I take T during daytime RLS; it works for RLS but not at all for PMLW. So I have to talk about that with the neuro.

I'm happy that T is still working for you. I'm on Requip and Neurontin as well.

The pills are only taking the edges of RLS. And I agree with you: without them I think I would jump of the roof too.
Hopefully the docs will find a cure or the pillmanufacturers concoct a pill that works all the time for everyone of us.

Have a nice Sunday.
Corrie

[cornelia]

Shelley,

I forgot to say I am so sorry for the horrible times your father must have had, not knowing what was wrong with him. I can imagine him trying to forget his pain for awhile by drinking and using drugs.

This is a bit gloomy what I am going to say just now, but I saw a video with a neuro saying that he knows of 3 people that committed suicide because of RLS. These people were NOT on meds.

Corrie

[cornelia]

Lyndarae,

At the end of August I started on Neutontin as an add on to Requip.
I am on 600 mg at 1800 and 300 on 2300. I started at 300 mg. But I know I need more.
My experience so far is that it helps, but that the dose has to be upped soon. I also experience that it only helps when not being stressed.
I agree with you that it helps you sleep, it still does. I was on Xanax (a benzo) to help me sleep and I don't need that anymore. It was easy going off it, because Neurontin took over.
My neuro says for RLS not to take more than 1200 mg for RLS, but I know lots of people take more.
Good luck with your graveyardshifts (I am going to google now to find what it means)!
Corrie

[cornelia]

Hi Lyndarae, I found it! Here it comes:

Corrie

Graveyard Shift
This term for a late-night work shift dates to around the turn of the 20th century. The nautical term graveyard watch appears in 1895. 1907 sees the move to land-based industry and the word shift added in place of watch. Both terms are American in origin.

The term does not date to the 16th century as is claimed in the Internet lore titled Life in the 1500s. Nor does it have anything to do with men stationed in graveyards listening for those accidentally buried alive to ring bells in their coffins to alert others that they are alive, nor is it a reference to medical students robbing graves in search of cadavers. Instead, the term simply evokes the desolation and loneliness of late-night work.

[jan3213]

It's Jan

I found this thread very interesting. Shelly, I have often said that RLS isn't cancer, it isn't fatal, but I wouldn't wish it on my worst enemy. However, I like YOUR spin on things--when you said that RLS IS life threatening--because, IT IS!! Regarding your point about RLS and suicide, my neuro told me several years that he has had patients come into his office and tell him that if they can't get relief for their RLS, they will kill themselves! He said he believed each and every one of those patients!

Corrie, isn't it interesting where some of our names for things come from? Thanks for finding the origin of "graveyard shift". I thought I'd add another interesting fact. In your second paragraph, you talk about people waiting at the gravesite to see if they could hear a bell from a grave, indicating that some one had been accidentially buried alive. This is where we get the term "dead ringer". Interesting, huh?

Lyn, HI!!!

Thanks for an interesting thread--and Lyn, once again, so good to hear from you!

Jan

[sthomp66]

Hi Jan & Corrie and thank you for your responses. Jan, thank you for seeing what I consider the fatal side of RLS. That night I was talking to my grandparents, my grandmother actually herself had throat Cancer. I explained it to her comparing the two ailments. While she had Cancer, and not to minimalize that, she at least knew exactly what she had and that there was a possible cure. She also knew what caused it - her years of smoking. With RLS there's only a few things we know for sure, it's going to get worse as you get older, there's no known cure and I did nothing abusive to my body to deserve this. As I've gotten older, it's now in my arms. I think my arms are worse than my legs. With legs at least you can stand up and get a little relief. When my husband found me in the hallway, standing on my hands, he thought it was time to purchase a straight jacket. Unfortunately, my grandmother lost her battle with throat Cancer two years ago. I do however, get some comfort knowing that she's with my father and now understands why he was who he was and it wasn't a bad path he chose, but what was chosen for him.

Gosh, I'm long winded!!! Now that I'm crying again with tears and snot running down my face I think I'll end this. Thank you all for listening!!

Shelley