A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

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Polar Bear
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by Polar Bear »

I so so so so wish your plans 100% success.
Baby steps - first is confirmation that time off work is ok, and hopefully paid.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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badnights
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by badnights »

It sounds like you're on the right track with this guy''s plan. I'm happy for you. Yes, it will be hell; but just tell yourself, over and over, that it will get better. The hell is only temporary. I'm rooting for you!
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
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rthom
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by rthom »

Did you get time off of work ok?

EeFall
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

rthom wrote:Did you get time off of work ok?


I put in for it yesterday. It is something you do by calling up and making arrangements with people who set up leaves through the company and my company medical. So it is all set up to take the leave! If I get paid for the month off is another story, that probably won't be decided until after I am already on the leave (believe it or not). Taking the time off is approved, but the pay may not be. I need the money but I also need my life back so I will struggle along without it if I have to.

Thank you guys for all your positive replies. I successfully did my 5th night. We went to bed at 8pm, I woke up at 1:30 but forced myself back to bed until 2:30am. So maybe 6 hours sleep. It looks like 6 hours is about all I can do now, I seem to be getting more restless the past 3 days. I looked up how long the mirapex (pramipexole) has been working and it is over 5 weeks now! Last time it worked 4 weeks. I am being extremely careful with my sleep and taking my meds (the last 2 nights I have had to take them earlier which many of you know is not a good thing). I am just hoping it lasts another 9 days so I can do the 14 days sleeping in bed with the VPAP.

My wife got some bad news yesterday (damn), she went to doctor about her leg and now he is saying (maybe he mentioned it before but we don't remember it) that the break was a spiral break (which is a bad thing) and her walking around on the trip and sitting in the cramped airline seats (even though we used wheelchairs in the airport) seems to have made her leg worse. Maybe it would not have healed anyways but the doctor won't let her go back to work now for another month, she was going back Friday, and she has to wear the boot all the time again and basically sit with her leg elevated for the next 4 weeks :(

That is not going to help the money situation, although it is possible she may yet get some additional money for being off, but it may not come now when we need it. We are still trying to get our new place fixed up, our retirement home. We just spent another $400 to have a new fixture wired into the ceiling where I have the pool table (an oversight on our part not to have one installed when we ordered the manufactured home last year). Plus we still have a list of about 25 things to do around the house which seems to stay at about that number because as soon as I do a few items we think of other things.

For an example over the weekend I reversed the dryer door. When you take the clothes out of the top loading washer you want to put them in the dryer, well whoever installed the front loading dryer put the door hinge so that the door was in the way. Reversing the door seemed easy, just reverse the hinges (it is made to work on both sides), but the reality was much trickier, the door had to be disassembled first (and 2 of the main portions of door removed and then reversed) and then the hinges are put on the other side :lol:

We purhcased these Solotubes for the house when we ordered it, one in master closet and one in guest bath. They needed to be cleaned out because somehow several flies (and assortment of flying bugs) had found their way into them and died and did not look well :o . I figured about a 2 minute job, just get a ladder and unscrew the sort of like a light fixture, clean it, and replace. Well the idiots who installed them at the factory did a fine job until I opened it up and found out they had forgotten to take all the protective plastic film off the reflecting surfaces :lol: it took awhile to remove them, then they had to be cleaned, sort of a buff job, and then they were probably about 75% more effective. We thought they were neat, like having maybe a 25 watt light bulb, now they are like having a 100 watt light bulb :D , they take the light from outside and magnify it into the house.

These are cheap examples, just labor involved really, but many of the items on the list cost money to do. I'm sure everything will work out. I just have to keep positive and get through this. If the plan works I am going to be changing many things in my life including I will start writing novels and poetry again, do artwork, and start jogging again too, these are just a few of the things I have had to give up. I have also been daydreaming about getting into shape, I would like to be a (almost) 58 year old buff weightlifter dude :lol:

debbluebird
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by debbluebird »

I'm so glad to hear your positive attitude. I'm sure you will get it all done. We have been working on our house for two years. We still aren't done. We are just so slow. My brother in law came out twice this month and helped. We got a lot done. Now it's up to us to finish everything. We live in a 125 year old cabin. Needless to say there is a lot to be done. We redid the bathroom, all new plumbing under the house, painted the kitchen cabinets, new carpet, new kitchen floor, new back door, new windows, new water heater on demand, painted all the rooms, new front storm door, rocked the drive way plus more. What is left is chinking the logs on the outside and painting the whole thing. A few years ago someone made the mistake of painting it. Now you can't not paint it. We still need a new back fence, new elec panel, and to finish the foundation work. 2 1/2 sides are done. Roof and furnace was already done, and we had insulation blown in the attic. They had taken out the old wood stove. We only have 600 sq feet, kitchen, living room, bath and two bedrooms. The second bedroom we are using as a work room, for my sewing, painting and my husband hobbies. It is small, but it's all we need.
Even the last two winters without the new windows the cabin stays very warm in our climate. It will be interesting to see how we do with the new windows. I also painted all the wood trim around the windows. We are very comfortable. When the house is done we will work on the yard. Right now wild grass is growing. It's not bad, doesn't need much water. Just keeping it cut. We want to put in a fire pit. Living at 8,200 feet is interesting.

EeFall
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

8,200 foot elevation 600 square foot cabin! Sounds awesome. Incredible amount of work you guys have been doing but it sounds like you will have it eventually finished just as you imagine it to be.

I spent over an hour today just cleaning up our bbq, it was Independence Day here today it is about 12:30am and I can still hear the fireworks going off outside, we have had it for 7 years now and suddenly the paint started coming off on the inside of the lid that closes over the food. Imagine having paint on a burger or some other food. I scrubbed it off, the paint, and then ended up cleaning the entire bbq so that it was as close to new as possible. The strange thing was that there is a coat of paint underneath the paint that peeled off and it looks as good as new.

We went to bed at 9:30pm and I woke at 10:30, then 11:40 and got up. I don't know what the problem is although it is surprising I haven't augmented yet and the sleep has been getting a little stranger for the last few days. I got the holiday off today but have to work tomorrow, Friday, which sucks. I will be one of the only people there tomorrow because most people use a vacation day (which I never seem to have because of WED).

EeFall
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

I was in bed last night 8 hours! 9:30 pm to 5:30 am, it doesn't get any better than that especially since I am continuing to wear VPAP machine and I'm using earplugs that really helps too. The earplugs are the kind my wife uses, they appear to be pliable wax (I don't know what they are made from actually) but they sure work good. It is not like getting 8 hours of sleep if I were totally normal but as close as I'm probably ever going to get to it :D

This is about 6 weeks now of using pramipexole and not augmenting, a minor miracle because last time it only lasted 30 days. Only 6 more nights of sleeping with my VPAP (14 total) and I will be starting the 17 days of getting off my pramipexole, Lyrica, and methadone. The last few days, despite my 8 hours sleep, I know the medications have not been working as well, I suspect that it is just because I am being extremely careful with everything that the pramipexole is still working.

I was down 25 pounds on the 4th of July! We are going off our frozen food diet today and opting for another company that sends food via FEDEX, shipped in dry ice. We thought this company was only an hours drive from us, but they ship from Illinois :lol: It is going to be here today rather than when it should have been here, yesterday, so they aren't winning us over at the moment. Their food (although they don't actually say it) is more of a Dr Atkins low carb diet plan. It is called Personal Trainer. We got an Amazon Local (new Amazon deal) coupon that took a 1/3 off the price for a month's order so we will be on it for 2 weeks (sharing) and see how it goes.

My insurance denied my benefits for taking off to Baltimore for 4 days, they are a piece of work for sure. There is no way they will give me any benefits for taking off for the month I need to get off the drugs either, I haven't heard yet, but I just know :lol: , I imagine that it is possible that I will be fired too. I will have to ask Monday the HR person about that. At this point I am willing to lose my job to get this to work. I think I can get a job as a contractor (job shopper) doing what I do again around here anyways and it will actually pay me more than I'm making now - plus I can retire from the company and get an additional check. My wife's insurance will pay for me also so I almost wish they would fire me.

rthom
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by rthom »

Sounds like it might be the best outcome for you right now. I hope so. A lack of stress would sure help.

Polar Bear
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by Polar Bear »

Well done Eefall on your continuing determination, and also well done on losing the 25lbs. :clap: :clap:
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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ViewsAskew
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by ViewsAskew »

For profit insurance is evil. And corporations can be just as evil when the bottom line trumps everything else. Hope that you're right and being out of a job will likely be better. I know it has been for me, for the most part.

Here's hoping you get through the next few weeks without too much difficulty.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

EeFall
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

Much has happened to me in the last week or so. Tomorrow night will be my 14th night of sleeping in bed with my VPAP but I believe I am beginning to augment again, it doesn't really matter, it is just that I need to work Thursday and Friday or I could be in serious trouble at work.

Today upper management came through for me and signed paperwork allowing my trip to Baltimore to stand, I will not get in trouble for the time off, and also (amazingly so) they have approved my month off from work! My last day at work will be Friday.

Friday will also be the beginning of my 27 days of hell.
On Friday I will no longer be taking Lyrica, that lasts for 3 days
days 4-8 I take .125 mg pramipexole (rather than my current .25 mg) and continue to take my methadone as usual
days 9-11 I stop pramipexole and stay with methadone
days 12-16 I stop morning dose of methadone and continue nighttime dose
Day 17 Stop methadone - so I won't be taking any medications at all for WED/RLS
Days 18-27 I take nothing at all (I hope someone has a straightjacket handy) :mrgreen:
Day 27 I am to call my Dr Earley and he will take it from there.

He believes that anyone who ever augments on a DA like mirapex should NEVER take it again. It begins some very unhappy times as I can verify. I first augmented about 2008 so I have been doing this up and down thing for 6 years!

Dr. Allen was originally going to be my doctor, I had talked to him on the phone and just from his one conversation I am now down 27 pounds lol. I see from another thread that he is retiring! No wonder he sent me to Dr. Earley. Both are great men.

What was the thing about a doctor in Seattle? I have gone to 2 of the best in Seattle, what did he say?

I have been so busy working, sleeping, and getting the house in order that I haven't been on here much lately. Today I finished cleaning out our shed. I spent 8 hours cleaning it out Sunday, I just want to have everything in order before this hits me, I am sort of afraid that I may not survive it so wanted everything fixed up for my wife. I know I should be fine, but I also know that this is putting me right in the middle of a war, a war with myself, and I doubt I will sleep for 27 days, but I guess I will see very soon. I took my regular meds a few hours ago and can barely type, will have to get up soon from couch - the fun begins but a little quicker than I realized augmenting sucks! I also took an ambien over an hour ago and it has had no effect at all - not good.

I have to at least try to go to bed because I promised Dr Earley I would try - wish me luck :D

Polar Bear
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by Polar Bear »

You are certainly wished all the luck there is, your determination sounds pretty strong.
Please let us know how you are getting along as and when you can.
And know that I (and many others) will be rooting for you and thinking of you.
When you do this and tell us how you are doing, it is an education for all of us.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

cornelia

Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by cornelia »

I wish you all the best and the determination to go through it all; you are a brave man even before you really have started.

I hope too that you will (be able to) post regularly, how it goes, your thoughts (probably suicidal from time to time) etc. This will be very important for us all.
If you can't we unserdtand of course.

Good luck
Corrie

ViewsAskew
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by ViewsAskew »

Here's hoping it goes better than you expect....and at the least that when it's over, you'll be much happier. Probably no way to sugarcoat what you're doing.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

EeFall
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Re: A Statagy for Fixing Me - My Visit to a RLS/Apnea Guru

Post by EeFall »

Thank you all for your comments. It sure has worked out in the nick of time because I am really having troubles again. I finally got to sleep last night about 2:30am and had the alarm set for 5:30am so I could go to work 2 hours later than I usually go. Tonight I took the last of the Lyrica I will be taking and tomorrow I go to work without it. It should be an interesting day, I just hope I can get through work. I am going early to work if I can, get up at 3:20am, I am heading for bed it is almost 10pm. I am really tired but had to take my meds 3 hours sooner than normal and paced around for a few hours. I had to do the thing where I work with my laptop standing up by the couch with the couch pillows propping it up. I had to figure out the mess we are going to be in with both of us not having paychecks for the next month.

I have paid ahead many of the bills in anticipation of this 27 days of madness, but I thought my wife was going back to work July 5th, it looks like going back east with me did her broken leg no good, or maybe it just would have happened anyway, who knows. I am very tired which is a good thing. I wrote Dr. Earley today a small note saying I was getting ready to start and that my company has seen fit to allow me to have the leave regardless of the insurance company trying to screw me over. I will finish taking care of the bills tomorrow when I get home so that I won't have to worry about them for the next month, it is at least nice to know exactly where one stands, even if bad, because worry is not knowing, if I know I'm running out of money on so and so day it is not as bad, it is the not knowing that can drive one crazy - especially going through withdrawals :lol:

So tomorrow morning there is no Lyrica in my pill box! Good night.

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