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

[rthom]

That's horrible. Maybe you could run off the sleep diary off the WEDF site to help you keep track of everything right now.

[EeFall]

That's horrible. Maybe you could run off the sleep diary off the WEDF site to help you keep track of everything right now.

Sorry for my ignorance but what is WEDF site?

[rthom]

RLSF site this one with the new name and design

[jakesmom]

I am so sorry you are going through such hell. Selfishly let me say your Lyrica story scares me because my doc wants me on 100mg 3X per day. Back to you. I know it's hell, but if I may be so bold, when you get down to just the pramipexole, just stop taking it. The withdrawls from titrating down are literally just as bad as not taking it at all. I am glad that you are able to get things done. I was a manic, hot mess. Had someone been watching me they would have thought I was a junkie going thru withdrawals (guess I was in a way).

I congratulate you on your drive and determination and I wish you all the best and when it's all over, I hope you go back to work and amaze them with the natural brilliance that pramipexole has masking for all these years.

You will be amazed at how you think and feel once you get to the other side, please, just hang on.

[EeFall]

I am so sorry you are going through such hell. Selfishly let me say your Lyrica story scares me because my doc wants me on 100mg 3X per day. Back to you. I know it's hell, but if I may be so bold, when you get down to just the pramipexole, just stop taking it. The withdrawls from titrating down are literally just as bad as not taking it at all. I am glad that you are able to get things done. I was a manic, hot mess. Had someone been watching me they would have thought I was a junkie going thru withdrawals (guess I was in a way).

I congratulate you on your drive and determination and I wish you all the best and when it's all over, I hope you go back to work and amaze them with the natural brilliance that pramipexole has masking for all these years.

You will be amazed at how you think and feel once you get to the other side, please, just hang on.

Thank you, I will try to hang on. I am almost done with pramipexole already. Dr Earley had me cut it in half for 5 days and this is day 4. Tomorrow I take it once more and then the next day none and I think that goes on for 2 more days. So I have already stopped Lyrica and then Saturday I will have stopped Lyrica and pramipexole...then onto cutting methadone...I just hope I don't end up having a stroke from doing this, it is really hard on me and I'm not getting any younger for sure...the body is designed to be rejuvenated from sleep, but mine is getting zip.

[rthom]

[EeFall]

:(

I am soooooooo tired

[debbluebird]

I can't even imagine what you are going through. How many more days ? Then what is supposed to happen ?

[EeFall]

I can't even imagine what you are going through. How many more days ? Then what is supposed to happen ?

On July 28th I will have stopped taking all my RLS medications including Lyrica, pramipexole, and methadone and then I have to go an additional 10 days without taking any of them. I have now been up for 93 hours (at 10:30pm) and there is absolutely no indication that I will be falling asleep anytime soon.

I worked my butt off again today doing things like vacuuming, cleaning, arranging all the tools in my shed toolbox, put a new blade on my lawnmower, fixing a broken outside faucet, fixing a couple of RC Helicopters and flying one outside today and promptly landed it on the neighbors roof.

If I still had a brain I wouldn't have thought for the first 15 minutes that I would have to wait for the lady to come home to ask her if I could retrieve it. Eventually I realized all I had to do was to start up the hand controller and fly it back off the roof worked like a charm until I landed on the roof of the other neighbors. After swearing off landing on houses I got the hang of it and had a good time (despite everything) and went through 3 lipo batteries of fun.

I'm typing this standing beside couch with laptop that is sitting on several couch pillows. I keep going into a kind of trance, I am turning into a space cadet.

[rthom]

I wonder if your neighbor noticed?

[Polar Bear]

Eefall, you mention going into a kind of a trance.
I can so empathize with that.
When I am totally exhausted I can continue to function but I feel 'removed' as if it's not really me and voices sound a little bit distant.
It's a truly weird feeling.
And I can't imagine that I'd be safe driving or even carving with an electric knife.

So, on 28th you will be without medications and then a further 10 days.
What then ? and forgive me if you have already told us what happens then.

You have done so well.... keep 'er lit.

[EeFall]

So, on 28th you will be without medications and then a further 10 days.
What then ? and forgive me if you have already told us what happens then.

You have done so well.... keep 'er lit.

Dr Earley seems to think that I may not even need medications by then, maybe some methadone to just control the nighttime RLS I may get like anyone with a mild case of RLS. I am skeptical to say the least. First of all he thought I would only have trouble at the time I began the 10 days of taking no medication. I tried to explain to him that taking even a half tab less of any of the 3 medications would cause me to not sleep at all. I sent him a note when I got back telling him that again but he didn't respond. I mentioned the other day to him via his email at Johns Hopkins that I had been up, at the time, 2 or 3 days.

Tonight is the last time I will use pramipexole, I will write him another note tomorrow about that and if I'm not sleeping I will let him know how long it has been. Even shutting my eyes for a few seconds make my RLS unbearable. It is withdrawals also though, which can be very similar to RLS itself but I can tell the difference. I have gotten off many medications over the last almost 14 years.

Anyway if it does not work out like he thinks then he will most likely be putting me on methadone, starting out low and working up, until the symptoms stop. I will only be taking methadone. He made it clear that he is not going to freak out about giving me enough to do the job, I had one doctor that was so afraid of methadone he refused to give me enough to help. Heroin addicts and people with terrible back pain, etc. can take 30 or 40 times what I take now of methadone (or more). I was only taking 12.25 mg a day of it.

If this does not work out my plan will be to drop ALL doctors and do kratom for the rest of my life and retire at 58 and get by the best I can with the time I have left. To tell you the truth at this point I am halfway expecting to have a stroke before this is all over, it is unbelievably hard on my body. Most people who haven't slept do virtually nothing, I just work more. I have found my wife watching me several times today while I have been working around the place. My wife is going to a wedding today that I can't attend because I wouldn't be able to sit still and wouldn't be able to be around so many happy people anyways. She left a few minutes ago to have a pedicure and I said enjoy it, she started crying and said she can't enjoy anything while I am sick. I just want this to end...

[EeFall]

I wonder if your neighbor noticed?

The first neighbor was gone, the second neighbor may have noticed but the guy is a recluse and the wife doesn't care. I know he is sick, I just don't know what he has, I have often pondered if it might actually be WED.

[rthom]

Most people who haven't slept do virtually nothing, I just work more. I have found my wife watching me several times today while I have been working around the place. My wife is going to a wedding today that I can't attend because I wouldn't be able to sit still and wouldn't be able to be around so many happy people anyways. She left a few minutes ago to have a pedicure and I said enjoy it, she started crying and said she can't enjoy anything while I am sick. I just want this to end...

I am like you too, I've always wondered if it was an RLS thing--the hyper thing when exhausted. Been that way all my life---You?
My wife and I have to go to a family event tomorrow too--and the drive is going to be a 2-3 hr nightmare, it will be stop and go for about 50 miles, argh. Then the retirement home with small rooms and too many people, and no air conditioning (it's 110* here today with the humidity)
So I get it, and I wish I could help you get some peace... All I can do is tell you to keep talking and know we are all here, Hope it eases soon for you buddy.

[EeFall]

I am like you too, I've always wondered if it was an RLS thing--the hyper thing when exhausted. Been that way all my life---You?
My wife and I have to go to a family event tomorrow too--and the drive is going to be a 2-3 hr nightmare, it will be stop and go for about 50 miles, argh. Then the retirement home with small rooms and too many people, and no air conditioning (it's 110* here today with the humidity)
So I get it, and I wish I could help you get some peace... All I can do is tell you to keep talking and know we are all here, Hope it eases soon for you buddy.

When I was a teenager during the summer I would work at a cannery. I'd work 10 or 12 hours a day (or night shift) go home and crash in bed until it was time to get up, take a shower, eat and go to work. That is how it used to be. I would work hard and sleep hard - never had any trouble sleeping until I was about 40 years old, by the time I was 45 it had gotten very bad yet I once went to online college for 3 years with 2 hours or less of sleep a night. So the hyper work only happened with WED although many years I worked 64 hours a week before I got WED.

I feel for you, I couldn't do what you are going to do tomorrow, at least while getting off these drugs.