Driving me crazy

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ViewsAskew
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Re: Driving me crazy

Post by ViewsAskew »

How is it going WBruce and Orrel? I want to take a drug holiday. I used a combo of gabapentin and pramipexole for the last 10 days to see how low I could reduce the opioid - I reduced it to 5 mg from 25 during that time. That part worked fine - but then I had to go back to the opioid for 3 days to stop the DA - because so much less is built up in my system, those 3 days were very hard! Each night as I twisted and turned, I thought of both of you - and I was getting a few hours sleep and was still miserable - not like you. Next for me, I think, is to stop it completely for 2 weeks - but I can't do it until September because of some part-time consulting work I am doing. At least I know I can use a DA for two weeks to stop the opioid - then it won't be so bad when I stop the DA because I won't be augmented.
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
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Joined: Sun Jun 15, 2014 12:23 am

Re: Driving me crazy

Post by Orrel »

Ann: I applied my last 1 mg Neupro patch on Sun.July 12 and, following the advice of my local neuro, left
it on until Wed. July 15. That means I have been completely DA free for 6 days. My drug holiday is not
completely drug-free as I take a small amount of clonazepam to help with sleep. The amount varies,
depending on how "benzophobic" I feel. It would average a total of one 0.5 mg pill in two divided doses.
The results are mixed. Daytime breakthroughs are now extremely rare. Symptoms usually don't arrive
until 11 p.m. But they can be as severe as when I was on an augmented DA. However, they tend to abate
around 4 a.m. and I can often get a decent sleep between 5 and 9 a.m. I realize that Dr. E talks about a
ten-day drug-free holiday which means things may improve. In his latest (must view) Webinar he says some
continue to improve up to 3 to 6 months. Everyone is different and it may take longer for my dopamine
receptors to reset than those of others. But my greatest fear of 24/7 symptoms with little or no sleep
have not (yet) been realized and that's a blessing. At least I am off the patch which, according to my
cardiologist, may have been the reason I ended up in the hospital at Christmas with ventricular
tachycardia (heart rate at least 230 beats per minute) and where a defib. was installed. I am now
really wired!! Also, I don't seem to have spacey lightheadedness anymore. I will see Dr. E on Sept 1
and will be able to talk to him about any unresolved matters and further treatment. I want to find
out what my baseline rls is. Compared with the hell I have endured for the last year, it may not
seem so bad. One final thought: During the grim days of World War 2, when things were going
very badly for the Allies, Churchill used to say KBO. When asked what these letters meant, he
said they stood for "Keep Buggering On" Not a bad motto for us fighting our personal battle with
a very strong enemy.

ViewsAskew
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Re: Driving me crazy

Post by ViewsAskew »

KBO it is!
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

Post by WBruce »

I spent my first night drug free last night. I probably had 3-4 15 minute spans of sleep the whole night. The symptoms are more severe just as Dr. Earley predicted, but not total body as he told me might happen. The worst is still ahead unfortunately. KBO

ViewsAskew
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Re: Driving me crazy

Post by ViewsAskew »

Well, here's hoping that it doesn't get worse.

KBO.
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

Post by WBruce »

Last night was a real breakthrough for me!!! For every 10 minutes of walking I could get about a half hour of sleep, an so on it went. I was also able to catch a few cat naps yesterday. Each time I would wake up experiencing vivid dreams and with intense RLS symptoms. So intense that I would bolt form bed, but then dissipate after 10 minutes of walking. I think that the worst is behind me.
Cheers

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

Re: Driving me crazy

Post by jul2873 »

So glad. Thanks for the update.

Polar Bear
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Re: Driving me crazy

Post by Polar Bear »

WBruce - I want to cheer... 3 times....
Well done :)
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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Posts: 16078
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Driving me crazy

Post by ViewsAskew »

Excellent news!
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

Post by WBruce »

Day #3
No change from last night. The 15 minute walking / 30 minute sleep seems to be holding. I think I posted yesterday about 5 AM, actually I continued walking/sleeping until about 9 AM and felt rested, that is until about 5 PM when I hit a brick wall. I was hoping for some improvement tonight so a little disappointed. KBO :(

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
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Re: Driving me crazy

Post by ViewsAskew »

KBO :-).
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.

jul2873
Posts: 399
Joined: Thu Nov 15, 2012 7:32 pm

Re: Driving me crazy

Post by jul2873 »

Well, you still have the underlying RLS, so I imagine that improvement will stop when the effect of the augmentation has worn off. I've never taken a dopamine agonist, but RLS just on its own is no picnic. I do hope you keep improving for a time, anyway. Good luck!

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

Re: Driving me crazy

Post by WBruce »

Day #4
The night started as in day three with half hour sleep periods, but around 3 AM, I got a 45 min period in, followed by an hour, then an hour and a half. Still feel very sleep deprived and depressed.

Polar Bear
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Re: Driving me crazy

Post by Polar Bear »

That's day 4. You have come so far......
I hope the 1 hour and 1.5 hour periods extend to tonight.
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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Posts: 16078
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Driving me crazy

Post by ViewsAskew »

Day five is supposed to be the magic number according to the Johns Hopkin's folks. Let's hope that is true for you.

I got through Day 4, quit on Day 5. A LOT of us have made it 2-4 days. I think it's expected that you won't see much, if any, improvement until the night of Day 5 or 6.
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.

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