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

[EeFall]

This definitely does not sound easy.
You are doing so well.
We are with you.

Thanks!

[EeFall]

After my last week of getting of of a DA from augmentation (and with methadone to help), I can only imagine how hard this is. I only got a few hours sleep and I HAD drugs to help....

The only good thing is that you know there will be another side and when you stop, you will be much better off.

Actually I don't know that at all. I am only doing this because Dr Earley seems to think it will help and he is one of the top doctors in the country, hence the world, but I don't know that it will be better. The two doctors that have helped me in Seattle are prominent doctors too and yet they were at a total lose. My doctor here said I was at the end of the line, Dr Allen who I talked to on the phone said I was at the end of the line, but that they might be able to help, no guarantees. I don't know why out of thousands of patients that I am the worse they have seen where I live but from the way Dr Earley was talking he has dealt with similar cases except I think he was a little floored that my first sleep apnea tests showed that I was waking up every 30 seconds.

I have an old friend who happens to be a girl (not a girlfriend) that came and visited us last year, she has been a friend of my wife's and mine since childhood. When she found out the seriousness of my problem, I usually keep it hidden from most, she began trying to solve it as people do, and I told her finally that some problems have no solutions. I did not tell her what I was also thinking was that death is sometimes the solution. I'm doing this mostly I suppose because I want to finally know that this isn't going to be getting better, that I can finally say that yeah, I'll be 58 years old in a few weeks (while going through this hell) but I can retire and spend the rest of my life as comfortably as I can. I hold out little hope and would be astounded if this works - ASTOUNDED!

I think what will happen is after going through the withdrawal stage and then the 10 days of no drugs that I will be awake 24 hours a day 7 days a week struggling to maintain my sanity as the doctor tries to give me back enough methadone (or whatever) to allow me to barely live again. I have backups on my backups of meds and alternative meds if this does not work. This 27 day test could actually make it worse, not better. That scares the crap out of me, that it could become worse! Anyway, I'm venting, I'm scared, and I am going through withdrawals and can't sleep. I just took my 5 mg methadone and .125 pramipexole not my normal 150 mg Lyrica, 5 mg methadone, and .25 pramipexole (the minimum to keep me sort of sleeping). Why should I be positive? This has been going on 13 plus years now and it is much worse now than at the start. I hope I'm wrong, I would so much like my life back again.

[rthom]

I was wondering about that Eefall. I hope at the very leat if they need to start you back on some of the same stuff--you end up with a better result from not taking it for a while----here's hoping for a miracle--

[EeFall]

I was wondering about that Eefall. I hope at the very leat if they need to start you back on some of the same stuff--you end up with a better result from not taking it for a while----here's hoping for a miracle--

Thanks man, I know you have been going through all of this too, I was just venting (as usual ) a miracle would be nice for all of us. I actually am not feeling half bad at the moment, my meds must have kicked in, much more powerfully than I would have imagined.

[rthom]

[EeFall]

I just tried to go to bed but that made my RLS symptoms jump up and remind me that it isn't happening

[EeFall]

2 days in a row with absolutely no sleep at all! I knew this would probably happen but the reality of it is much worse than the head knowledge.

On a brighter note we went to my wife's doctor about her broken leg today and he released her to return to work. We then drove over to her work and she assumed it would take two weeks to get her on the schedule but the reality is that she works tomorrow. Good news cause I'm out of work for a month without pay trying to get through this detox, I guess you would call it. She dropped me off and went on to do other things because I couldn't take sitting in car anymore.

[rthom]

Is she feeling up to going back to work?
I hear you on the no sleep thing---none at all here either.
Ben one of those days too, everything going wrong..... Just came home from fixing one neg and the fridge door fell of right down my leg (ouch--big scrape/bruise) I was hoping to rest for a few min but not now (the dog is babysitting the food -- Hmmm -- not really comfortable with this idea). Anyway the fridge is only about 2-21/2yrs old. About 4 days ago we just shredded everything we don't need (guess where the warrantee info is?)
It's been a week of this ...... Well better get at it I guess. Like they say no rest for the....

[EeFall]

She is up to going to work, it has been 9 weeks. It will be sore at first but no way around that.

Going without sleep days, weeks at a time is nothing too new for me, but the withdrawal thing is much worse. It is the intensity level I guess. Usually I would be falling asleep on my feet until I would run into something or fall down, with this I am not falling asleep at all, it is just a constant scramble to relieve myself of the pain. I can't pace forever, yet if I sit down I have to get up. The best time is between about 5 am and 2 pm so far when I can sit as I am doing now, but it is difficult because I feel it everywhere, I mean it is within my arms and legs and back mostly, but that is pretty much the whole body I have a book I really want to read but I can't, I can't concentrate on watching TV, listening to music which I usually enjoy seems tedious. Eating is enjoyable while I do it but it is just such a short period of time that it really doesn't count. I weeded some out in yard today but I couldn't get into it either. I can't get away from myself is the problem. What hell this is, I wish I could knock myself out. I have a bunch of medications I could take but then the whole thing would be pointless! It doesn't even help to hear myself groaning, which I have been doing. So the only solution is to bite the bullet and let the time pass, it is the only thing that can be done. Time of course goes to almost a standstill when one feels like this and I will look at the clock and think OMG it has only been 10 minutes since the last I looked. It happens over and over and over again, just a constant restlessness that brings no end, no satisfaction.

I HATE RLSWEDSLEEPAPNEAPLMWITHDRAWALMOVEORITWILLHURTYOUSYNDROME.

[EeFall]

I received my labs today:
Name Result Normal Range
Iron Total 66 mcg/dL 60 - 165
Iron Binding Capacity, Unbound 249 mcg/dL 126 - 382
Iron Binding Capacity, Total 315 mcg/dL 300 - 480
Iron % Saturation 21 % 20 - 50
Ferritin Level, Serum 335 ng/mL 22 - 275

I see that my ferritin is 335, the highest by far ever but this is because of the 3 iron infusions I had awhile back. What I am wondering is why my Iron total is so low and also the iron saturation and iron binding. Anyone know what this means?

[debbluebird]

So sorry EeFall that you are having to go through this, and you too, rthom along with your troubles. I've never had it bad enough where I didn't sleep at all. My worse is 2 hours of sleep. Then I become impossible to live with, I cry a lot. Honestly I don't know how you two do it. Other than you don't have a choice right now. My flare up is continuing. I've had WED for most of the day. Up and down a lot. I've taken an extra Methadone and two Ativan. Don't know how tonight will go. I did sleep last night, but I had extra Mirapex in my system from the night before. My husband made me take it. He needed to sleep. He has trouble sleeping because of pain in his neck. He needs surgery but can't get it until insurance kicks in, one more year. He gets worse every day. We were supposed to do more on the house this summer, but he can't seem to get out of bed. I can't pace because of my hips. I usually sit with my legs elevated but the WED won't allow that. I have found if I sit straight with my knees bent I can do that for awhile. Then I get up and do something around the house. Like you said, it's hard to concentrate on anything right now. At least the All Star baseball game just started. Some times I don't see how we all can continue to live like this. Even though I got sleep the last two nights, I'm still exhausted. That part I don't understand. I am also disappointed that I can't make an appt. with the hip doctor until Oct. Also like you said, it's trying to pass time. I just haven't felt good enough today to try and do much of anything. Oh, how I hate this. I know that the Mirapex makes me more emotional. Too bad we live so far apart.

[EeFall]

Honestly I don't know how you two do it.

We all have our own demons messing with us, you have your hip problems which I think are equally troubling to not sleeping at all. WED is bad enough without having other problems too. Thanks for your note. I am thinking that I will see my wife at 3:15am this morning when she gets up and I will not have gone to bed yet. It should be an interesting day sitting here by myself while she is off working. I hope for the best for all of us suffering tonight

[debbluebird]

It would be fun to have some sort of reunion. Al the husbands and wives. Central location.

[EeFall]

It would be fun to have some sort of reunion. Al the husbands and wives. Central location.

It probably would become one be brawl lol, a bunch of people getting together with little sleep, oh well - maybe when they find a cure!

Last night I tried going to bed at 9:30pm and it went downhill from then on. I lasted for less than 5 minutes in bed and then did not sleep at all again and paced for hours. I have been up something like 90 hours now...oh except for the 5 seconds sleep I had when I poured my hot full thermos container of coffee on me and the couch

[EeFall]

July 12 Friday 4 hours sleep woke 2:10am Stopped Lyrica
July 13 Saturday No Sleep No Lyrica
July 14 Sunday 2 hours sleep woke 1:30am No Lyrica
July 15 Monday No Sleep No Lyrica & 1/2 Pramipexole
July 16 Tuesday No Sleep No Lyrica & 1/2 Pramipexole
July 17 Wednesday 11:30 pm & No Sleep So Far & No Lyrica & 1/2 Pramipexole

So as of 11:30 pm tonight 70 hours in a row of no sleep
In the past 120 hours (5 days ending at 2:10am this morning) I have had 6 hours sleep (4 hours Friday & 2 Hours Sunday)

I'm writing this all down so that I can keep a record of it.