Driving me crazy

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WBruce
Posts: 31
Joined: Wed Feb 11, 2015 2:14 pm

Re: Driving me crazy

Postby WBruce » Mon Jul 27, 2015 10:22 am

Day #5
Another !@#$%^& shitty night! Not a single stretch more than an hour and no good REM sleep. All of it "was I dreaming or just thinking?"
I have some extra hydrocodone left from before, tonight I'm going to take it. CAN'T STAND IT ANYMORE!!!!!!!!!!!!!!!!!!!!!

Polar Bear
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Location: N. Ireland

Re: Driving me crazy

Postby Polar Bear » Mon Jul 27, 2015 1:03 pm

I really hope the hydrocodone is of some benefit. .....
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

jul2873
Posts: 392
Joined: Thu Nov 15, 2012 7:32 pm

Re: Driving me crazy

Postby jul2873 » Mon Jul 27, 2015 8:46 pm

Now that you're off the DA, what's the long range plan? You can't keep going on like this? Do take care.

ViewsAskew
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Re: Driving me crazy

Postby ViewsAskew » Mon Jul 27, 2015 10:52 pm

Here's hoping that the opioid works....
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.

WBruce
Posts: 31
Joined: Wed Feb 11, 2015 2:14 pm

Re: Driving me crazy

Postby WBruce » Tue Jul 28, 2015 7:19 am

My wife reminded me of my commitment to Dr. E to go a FULL TEN DAYS drug free so I did not take the opioid tonight. So here I am venting my rage at 3AM. I have these barely controlable urges to put my fist through the wall or to destroy everything around me. Just through some chairs across the room and awakened my wife. I would just like to put my fist through the computer screen!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

figflower

Re: Driving me crazy

Postby figflower » Tue Jul 28, 2015 8:06 am

Bruce have u tried any of the most likely not to work alternative solutions? Whatever u may have tried has obviously not worked so if u can stand to go through the litany then it will give others following in your footsteps a heads up on what not to bother with. I know the weather channel will send me into a vertical coma.

ViewsAskew
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Re: Driving me crazy

Postby ViewsAskew » Tue Jul 28, 2015 8:59 am

WBruce wrote:My wife reminded me of my commitment to Dr. E to go a FULL TEN DAYS drug free so I did not take the opioid tonight. So here I am venting my rage at 3AM. I have these barely controlable urges to put my fist through the wall or to destroy everything around me. Just through some chairs across the room and awakened my wife. I would just like to put my fist through the computer screen!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


I admit - I am sort of happy you didn't take it (knowing full well I am not the one feeling as you do!). I've some relatively bad breakthrough tonight, but I'm still sleeping for an hour or so before I have to get up.

When I was doing the same thing, warm (actually scalding hot) baths did help me, albeit for 20 minutes (about the time they'd start to cool off). I spent a LOT of time in showers and baths. I'm sure you've tried that (or cold water - or alternating hot/cold). I actually could fall sleep for at least a little while in the bath.

Is there any difference at all? Earley really seems to believe that Day 5 is pretty magical and that it should get better from here. I truly hope this is true for you. You must be somewhat crazed by now.
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.

Orrel
Posts: 101
Joined: Sun Jun 15, 2014 12:23 am

Re: Driving me crazy

Postby Orrel » Tue Jul 28, 2015 10:37 am

As already stated, I will be seeing Dr.E on Sept. 1. Knowing his preferred regimen,
and with the help of a local neuro, I took myself off the Neupro patch and have been
using only clonazepam. If I remember correctly ten days is his minimum period for a
drug holiday. He prefers fourteen. Dr. B (God bless this wonderful, caring human being) told
me in an email that it could take from two weeks to two months. Last night was my thirteenth
completely off the DA. Maybe I will be a two-monther. My results have been mixed.
Although better than when I first started the drug holiday, I still have considerable rls activity.
But I am hanging in because I refuse to go back on a DA and lose all the hard-fought ground
I've gained. What other choices do I have? Lyrica messed up my brain and opioids scare me.
Dr. E has said he has had patients continue to improve for up to three to six months.
Being off the patch has brought me a benefit. I no longer have the feeling of lightheadedness. KBO

JimmyLegs44
Posts: 90
Joined: Thu Oct 01, 2009 5:24 am

Re: Driving me crazy

Postby JimmyLegs44 » Tue Jul 28, 2015 4:20 pm

As I've stated in another thread, I'm not a believer in the 10-day, no coverage plan. I have to believe that for most of us, the withdrawal symptoms are too unbearable to endure for 10 days. I shared the John Hopkins 10-day plan with my PCP, and how they indicated the opioids likely only keep the DA withdrawal symptoms at bay. He was skeptical of this, and shared my opinion that they are probably just trying to avoid prescribing opioids because of the problems associated with them. Can't say that I blame them for that; it's a difficult environment to say the least. That being said, if that is the case, it doesn't say much for the medical profession to let patients suffer needlessly if there is help out there. Even my PCP would only prescribe me an opioid (MS Contin, at the lowest available dose) to cover 10 nights (nothing for the daytime withdrawal symptoms). It did not even come close to covering the symptoms, and the days were unbearable. I lasted two days. The opioid made me sick (vomited on day two), so if I didn't tolerate this one, not sure how I would do with oxycodone or methadone. Having failed on my past four drug holiday attempts, I'm back at square one and hoping for a miracle. All I know is eventually I need to get off pramipexole, as I'm sure the augmentation will not get any better as time goes on.

I REALLY don't believe that baseline RLS symptoms will be achieved in 10 days, especially considering the fact that Dr. Earley, in his webinar, even admitted that the 10-day period is completely arbitrary. Dr. B's timeline of 2 weeks to 2 months is much more believable. I realize they've had their success stories on this 10-day plan, but I wonder how many more failed attempts there have been that we haven't heard about?
The best way out is always through. - Robert Frost

Polar Bear
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Re: Driving me crazy

Postby Polar Bear » Tue Jul 28, 2015 6:49 pm

WBruce and Orrel ---- I have such respect for both of you. You are both suffering so much and we appreciate your willingness to share it with 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

ViewsAskew
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Re: Driving me crazy

Postby ViewsAskew » Tue Jul 28, 2015 7:10 pm

JimmyLegs44 - your thoughts are similar to mine. At least the JH folks allow you to start using other drugs after the ten days, IIRC. So, you're not out there crazy for 2 months!

That said, while I am very glad I was a Dr B patient the third time I tried to get off the DAs, I have to wonder if the opioid didn't make my symptoms worse than they had to be.

In terms of the opioid making you sick - I remember reading (years ago - when hydrocodone made me projectile vomit) that there are essentially 3 types of opioids. If you have problems with one, you will not necessarily have trouble with others. Hydrocodone still makes me projectile vomit, yet I can take methadone and 4 or 5 others without any nausea. And, for some, the nausea goes away after a few days to a week or so (you might be able to slowly increase the opioid as you decrease the DA to get used to it)- or if you really have no other options, you can take an antinausea drug with it.
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.

WBruce
Posts: 31
Joined: Wed Feb 11, 2015 2:14 pm

Re: Driving me crazy

Postby WBruce » Wed Jul 29, 2015 7:34 pm

Day # 7
Here is an update.
Shortly after posting my mad as hell post 2 nights ago I completely lost control. It was not pretty, a bookshelf ended up on the floor, table upturned, and my hand all bruised up. My wife left in terror to a sister's house. I seamed however that the hand of God intervened after that because after 4 AM I was able to get one hour stretches of sleep all the way until 11 AM. I feel very embarrassed and sick of the damage I created. As it turned out, I did get in the end quite a bit of sleep that night.
Last night was a 2 1/2 hour night again, with nothing until 3 AM. I should note that I have not slept longer than one hour in a stretch for 3 weeks!!!! I definitely can not say that my quality of life has improved one bit since going without drugs but can say that the intensity of the symptoms has diminished somewhat, if that makes sense.

ViewsAskew
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Location: Los Angeles

Re: Driving me crazy

Postby ViewsAskew » Wed Jul 29, 2015 9:45 pm

Sounds like it's getting better - that's good! So sorry you and your wife are going through this. I do hope we can start educating our doctors about this - SOON! No one should have to go through this and thousands of us will as long as docs keep prescribing this the way they do.
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.

Yankiwi
Posts: 387
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Driving me crazy

Postby Yankiwi » Thu Jul 30, 2015 9:53 am

WBruce I'm so sorry you're going through this but maybe you're beginning to see some light. I'm so glad that for my 10-20 years of nightly torture with maybe five hours of sleep if I was lucky I was not prescribed dopamine agonists or I'd be in the same boat. It's far better to suffer a little than have to go through severe augmentation and withdrawal.

WBruce
Posts: 31
Joined: Wed Feb 11, 2015 2:14 pm

Re: Driving me crazy

Postby WBruce » Fri Jul 31, 2015 4:31 pm

Day #8
Things are definitely looking up!!! Still only sleeping at most an hour at a time, but it seems that after walking about 15 minutes I am almost always able to fall back asleep again. So although I was up every half to one hour through the night, I was able to accumulate enough sleep to feel the best I have felt in a month. My wife says that my legs move every 20 seconds while I am sleeping especially towards the last half of my one hour sleep period. I will be calling Dr. E. Monday and hopefully get on something that will allow me to stay asleep through the night. Others can not appreciate the dark time that I went through to get here but I am very joyful!!!!!!!!!!!
Thanks to all of you that gave me encouragement along the way and especially to my friend Orrel.


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