Driving me crazy

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JimmyLegs44
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Re: Driving me crazy

Post by JimmyLegs44 »

Congratulations, WBruce! I hope the worst is behind you, and that you are one of the "lucky" 25% that no longer needs medication when your washout period is over. I know all too well the "dark time" that you speak of; I can only stand the darkness for two days, so I really give you credit for lasting this long!
The best way out is always through. - Robert Frost

Polar Bear
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Re: Driving me crazy

Post by Polar Bear »

WBruce - well done and I really wish you an even better night, 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

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

Re: Driving me crazy

Post by WBruce »

Day #9
Same as last night. Probably got 7 hours of sleep but never for over an hour at a time. Usually 15 minutes walking is enough but a couple of times it was 30 minutes. I doubt if I am getting into deep REM sleep because I don't feel that rested.

ViewsAskew
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Re: Driving me crazy

Post by ViewsAskew »

WBruce wrote:Day #9
Same as last night. Probably got 7 hours of sleep but never for over an hour at a time. Usually 15 minutes walking is enough but a couple of times it was 30 minutes. I doubt if I am getting into deep REM sleep because I don't feel that rested.


You likely never completed a 90 minute sleep cycle - REM comes at the end, so you likely didn't get any.

For, me, that was why I started on drugs in the first place. The RLS/WED wasn't so bad, but I didn't get deep or REM sleep because of the PLMS, even though I was sleeping 9-12 hours a night. Without stages 3-5, no matter how many hours you sleep, you feel just about as bad as when you didn't get the sleep.

BUT! How great that it IS improving. Who knows where you'll be in a week or two. Must feel very encouraging.
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 #10
Hooray, I made my 10 days. Not to say I feel any better. Over a 10 hour period, I maybe got 5 hours of sleep. I walked from 1:30 to 3 AM and never had a stretch of sleep longer than an hour. I'm going to take some hydrocodone at bedtime tonight and I will be calling the Dr. on Monday.
Just curious what ViewsAskew is taking. Probably what I should be on as well.

Polar Bear
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Re: Driving me crazy

Post by Polar Bear »

Day 10 - You have done so well !!

Hope the hydrocodone is of benefit 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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Re: Driving me crazy

Post by ViewsAskew »

My regime is a bit convoluted - I went through what you're going through about ten years ago. So, I've had a lot of time to adjust, try, etc.

I am one who has issues with tolerance and opioids. Since I had no luck with the alpha 2 delta drugs - gabapentin, etc - I had to stick with opioids. And, my dose went up each year.

About five years ago, I had the idea - because I was very concerned about hitting a dose ceiling in a few years - that I could alternate pramipexole with my opioid. I'd never have tolerance, and I'd never augment. Doctor agreed it was worth a try and I've been doing it since. I have an issue with alerting - worse with the opioids - so I also take a low dose of gabapentin to help with that. It's not perfect, but it's better. This isn't the whole story, so I still have issues to resolve.

I've often thought everyone with daily and severe symptoms should start here. It really does resolve many issues. Not individual side effects, of course, but the main problems with both drugs. Because I augmented so quickly initially (before my two week follow-up appt when first prescibed) and my ferritin was never higher than 40 and often in the teens or single digits, I alternated 2 and 2. But, now that I've had two infusions and my serum ferritin is over 100, I've been extending the pramipexole. I tried 5 days for a few months, and most recently two weeks. No augmentation.

I am doing this because I stopped the swapping for awhile - I was having issues with depression that appeared related to pramipexole and gabapentin. I think now that these just exacerbated something already there - I was also very low in vitamin D - which made everything worse. So, after I was feeling much better and was having tolerance issues, I wanted to start swapping again. But, this time I'm physically dependent - I wasn't before. So, I want to stop the opioid for 10-20 days, then go back to swapping.
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 #11
Thank you ViewsAskew for sharing your regimen. Very imaginative switching back and forth like that. Wondering out loud if that would work for me. I was just wondering what you mean by "alerting". Meaning that you don't feel sleepy at night?
Were you on Pramipexole at a much higher dose at an earlier time like I was? Wondering because Dr. E. said that once you have augmented that you will augment much faster the second time and therefore he did not want to consider any DA drugs for me. However, the thought of daytime sleepiness and drug dependency that goes with methadone scares me. So switching back and forth might work????
Last night I went to bed at midnight and took 20mg. of Hydrocodone at that time. I woke up at 12:45 AM and took 20mg. additional. I woke up again at 1:45 and took 20 mg more. I was then able to sleep until 5:45AM. It felt good to sleep that long and I don't feel hung over from all that hydrocodone. I'll be talking to Dr. this afternoon.

ViewsAskew
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Re: Driving me crazy

Post by ViewsAskew »

Hope these answers help.

Alerting - indeed that I do not feel sleepy after I take the meds. Many of us here have the same issue. The docs think it may be related to the brain and the the alphs 2 delta drugs - such as gabapentin - can resolve it. They do indeed help me sleep.

My dose of pramipexole wasn't so much that high, but it was about 400% higher than I started. I augmented in under 2 weeks. When the doc, after over a year of augmentation, tried other DAs, I augmented in hours.

So, I get the concern! My hope was that after a few years off, I'd not have issues. And, I didn't. But, I have NO idea how long one would need to stay off of the drug to achieve what I did. 2 weeks? 30 days? 100 days? A year? My symptoms gradually decreased for about a year. So, maybe it took that long.

I truly wish doctors would go to the swap idea BEFORE anyone augments, becomes dependent, or gets tolerance. All three of these solved by this very easy approach. Since most people - 99.9% I would guess - do not augment before many months, how easy to take a DA for 3 weeks, then an opioid for 1. Or DAs weekdays and opiiods on weekends. Whatever.

There are worse things than dependency and tolerance. But, they still suck! So, avoiding them is smart.

You may find you can take the alpha 2 delta drugs now, too. At least from the folks here, they do not seem to work well with the severely augmented - and maybe not even the moderately. So, if you tried them while augmented, they may not have worked. But, they might now. We do hear that a lot of people find they stop working as well over time. Seems another good drug to alternate.
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 #12
Well Dr. E. is on vacation until the 17th!!!!! @#$%^ Can you believe it? Talked to the nurse and she suggested trying Gabapentin. So that recommendation is right in line with the paragraph above. It will take a few days to get it in so in the meantime I'm going drug free. Slept about 3 hours in 45 min to 1 hour intervals last night. Anxious to get on with my life and put this behind me.

Polar Bear
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Re: Driving me crazy

Post by Polar Bear »

Fingers crossed that Gabapentin will help with sleep. :yawn:
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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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Driving me crazy

Post by ViewsAskew »

Well, hope it helps!
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 #19

Last night was my first night on Gabaperntin. I took 600mg at 8PM and another 600mg at nidnight when I went to bed. I slept until 2:45AM. When I woke up I was so drunk that I couldn't hardly walk!! Holding unto the kitchen island I was able to walk 15 minutes and went back to bed. Then woke up at 7:45!!!!!! I got a total of 7 and a quarter hours and only waking up once!!! I am soon excited!!! Now my question is: Does anybody know the half life of Gabopentin and how long typically it takes to kick in? I want to try lower doses but I thought I would ask what dosage others are taking. Two nights ago my sister in law gave me a 400mg pill which I took at 8:00PM. I didn't have any effect from that. I got my usual 2 1/2 hours in half hour and one hour increments. so I would say that the proper dose for me will be between those extremes. I had an appointment set up with a neurologist in Naples for Friday (I would have to fly down there since I am in Michigan). I think that I will cancel that appt.I AM SO EXCITED!
Will I develop tolerance to G over time?

Polar Bear
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Re: Driving me crazy

Post by Polar Bear »

I really hope that this works for you.

I have never used Gabapentin but there are many who do and I'm sure you will have some opinions regarding dosage.
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

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

Re: Driving me crazy

Post by WBruce »

OMG
Went back to bed at 10AM and slept till noon!!!!!!!!!!!!!

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