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

[debbluebird]

No one understands this unless they have it. It's just too hard for them to comprehend. I guess because it doesn't make sense. "Just take a nap." "Why can't you sleep?" "Everyone sleeps." People just give me a blank look when I try and explain it. I don't really try anymore.
What he said to you was like, "hope you fell better soon". "Get well", when they know you won't. It's just hard for everyone.
Glad you got a couple of hours.

[EeFall]

It is just that this is exactly why there is no cure for WED and why my short term disability insurance refuses to pay me benefits. There is not going to be research on something so easy to relieve, just go take a nap you freaking loser and the insurance isn't going to pay me for missing work because I'm a little fidgety

It just rubbed me the wrong way and after going through the last week of withdrawals, RLS, and no sleep it just makes me feel that much worse.

The withdrawals are back in full swing, I imagine that the kratom is mostly responsible but I can't keep taking it or it replaces one drug for another. I have absolutely no choice because the two choices are give up or continue per the doctors orders.

I doubt that a doctor would give this type of plan to get off these drugs (at home, by self) if they had ever experienced just what it is they are asking me to do to get off these drugs. It is almost an impossible task. It is 11pm and I won't be out of this hell until at least 4am this morning. No sleep and I feel it in my body the restless leg syndrome WED or whatever it is called it is bad! Then I also feel the incredibly graving my body has for something I am not giving it! It is screaming at me give us this thing, it is our precious gollum gollum.

The perception of time is distorted all out of proportion, it is like asking me to spend an eternity in hell. It is not 5 hours I need to struggle with this, it is an eternity.

I'm so tired,
I'm in a trance.
I'm so restless,
my mind aches.

I'm arguing and
my self is winning.
I'm pleading my
case to an empty

I AM,
watch me nail
into my own flesh
illusions.

My one man,
jerky dance in
the kitchen,
no joy.

[debbluebird]

I just got up for the rest of the night. I feel guilty telling you that I got 2 1/2 hours. It's going on 2:30 am now This is my new reality. I think I'm on your old schedule, when you used to get up to go to work. My WED wasn't quite as bad during the day yesterday. I was hopeful that I might sleep longer tonight. I have been taking two extra Ativan the last few days. I really don't want to get into that habit. So I don't think I will take any tonight. It really didn't help much anyway. It's a bad drug to take all the time. I've been thinking about what they are having you do. Wean off all of your drugs until you are down to the Methadone. I'm wondering if I'm actually augmenting on the Mirapex. I'm having WED/PLMD 24/7 now and not sleeping much at night. It's just that the last time I tried it without the Mirapex I kept adding other stuff and it never worked. But I never went up on the Methadone. I always itch so much if I do. Plus there's the nausea and vomiting that's happened before.
You are right, about the mind turning to mush. When I'm in the soo drugged up state I never know if I'm dreaming or awake. It's almost like hallucinating.
This really isn't anyway to live and I'm not any where near the situation that you are in. People understand what end stage means. If you are in stage four then I must be in stage three. If I'm truly augmenting then how can I try the neupro patch when it's a DA?
Well, my husband can't sleep right now. He has insomnia. He just went into the kitchen to make home made donuts. I think I will go and help.
Later, DEB

[rthom]

Bleep

I hate it when we type out a response and this thing takes it==I wish there was some way of retrieving what we wrote
I had responded and hit enter--mine disappeared and Deb's response was there instead. Eefall I will have to get myself to do it again later (arms and legs are insane and I hate doing this with them bugging so much)

[rthom]

Deb I'm coming to your place for donuts maybe Eefall will be there too--lol

[ViewsAskew]

Bleep

I hate it when we type out a response and this thing takes it==I wish there was some way of retrieving what we wrote
I had responded and hit enter--mine disappeared and Deb's response was there instead. Eefall I will have to get myself to do it again later (arms and legs are insane and I hate doing this with them bugging so much)

rthom, when I'm tired, I sometimes lose posts, too. Before I save a post, I highlight what I wrote, copy it with CTRL+C and then save. If I messed up in some way, I still have what I wrote and can copy it into a new post. If you can get in the habit, it may help prevent this from happening to you.

[Polar Bear]

Ann, I have done this also. Not here on site but when I was working. Perhaps after typing up a really long legal document, I always used the 'save' principal. To others it appeared very much belt and braces..... but my way worked !!
Thanks for reminding me of this

[EeFall]

I've been thinking about what they are having you do. Wean off all of your drugs until you are down to the Methadone. I'm wondering if I'm actually augmenting on the Mirapex.

It is worse than just going down to methadone, I am 1/2 off it already by next Sunday I won't be on ANY of my RLS drugs then I spend 10 full days without any drugs. The doctors theory is that once anyone augments on a DA then it will never work for that person again correctly, hence, never take it again. It causes a worsening of the RLS symptoms until one is like me with it 24/7. He believes when I am finished with this I will not be 24/7 but more like having it a few hours at night like it was with me 20 years ago. So he believes that the severity of mine is due to severe sleep apnea along with severe RLS that is artificial in a way, brought on by a constant yo-yo effect that can never be corrected by a DA once one augments on it.

Last night was probably one of the worse nights I have ever had the un-pleasure to live on this Earth. I ended up dancing to my iPhone music with headphones for hours, never going to bed again. It wasn't enough to pace but to actively dance like a madman to lesson the withdrawal effects that are similar to RLS symptoms themselves, but much worse.

I have just been able to sit for awhile and it is 9:15 am

[EeFall]

Deb I'm coming to your place for donuts maybe Eefall will be there too--lol

A donut would be nice. I have found that if I lose a post that if I hit the forward button on my Internet browser that about 95% of the time it is still sitting there from where I lost it

[rthom]

ty

I can't remember my pre post

[EeFall]

I finally read the doctors letter regarding what to do for the 10 days I am totally off the drugs. I should have read it sooner because I realized that my symptoms already far exceed what he expects them to be on the 1st and 2nd day of no drugs. I wrote him a note this morning because if the symptoms are this bad now, 10 days before day 1 of no drugs, then it may be too tough for me to pull it off by myself. I let him know I was up for 5 days and nights in a row and last night I had to dance all night (sounds funny, but no) just to get through the night because pacing would not relieve symptoms (this has never happened to me before). Also the sleep I had had the 5 nights before was only 2 hours and the night before that I hadn't slept at all either.

Something is terribly wrong I fear but all I can do is continue and see if he replies and if he does what he says. I think this might be very serious. I am not even having micro-sleep where you fall asleep for seconds, only once has that occurred (long enough to pour an entire thermos of coffee on me lol). All I can think what it might be is that I must be terribly addicted to Lyrica, pramipexole, and methadone at the same time. Bizarre. I suppose it could also be because my WED has gotten worse, every time I think that it can't be worse it turns out to be so. I'm starting to think I am a real freak of nature, if this doctor hasn't encountered anyone with my level of WED, then I probably am up a creek without a paddle.

[Polar Bear]

Eefall ..... You're getting there...

[EeFall]

Eefall ..... You're getting there...

I know, thanks. I am so up and down (almost by the hour now) that I am just over worrying about everything I suppose. I have been following the plan though, even though it seems that it won't work much of the time. I just have to remember that I am looking from a distorted perspective most of the time with having severe withdrawals, severe RLS and sleep apnea. I'm just not thinking clearly but if I can see the plan that is setup on the frig and look at the calandar of what needs to be done next then I just have to do that and HOPE.

[ViewsAskew]

It's hard to remember that we look through that distorted lens, isn't it? Here's hoping he is not looking through a distorted lens and he can clearly guide you.

[badnights]

eefall, you have the self-perception when you need it:

I just have to remember that I am looking from a distorted perspective most of the time with having severe withdrawals, severe RLS and sleep apnea. I'm just not thinking clearly

That is so true, and bonus for you that you recognize it, I don't know if I could if I were in that state.

Re the comment

I must be terribly addicted to Lyrica, pramipexole, and methadone at the same time

- not addicted! That's when you take more than what's needed to control the symptoms.

Dependent, yes, that will cause you to have withdrawal symptoms. It might be Lyrica withdrawal, because although I haven't seen anything in the literature, I've heard of gabapentin withdrawals consisting of worsened WED. But why not blame it all on the pramipexole? You had cut the pramipexole in half when it started (the worsened restlessness/nasty-sensations). That's all it takes. Now, however, you have opioid withdrawal to contend with too, and that's eerily similar to regular WED symptoms, with added nausea and sweats. AND, you have your regular WED symptoms to contend with.

It does seem a brutal way to clear the drugs away, but remember this guy has lots of experience.

You keep on there, eefall, and make this count. Make all this pain worth the terrible cost. You show him that you can pass the test.