Dopamine agonist withdrawal

[Polar Bear]

Orrel - you have come so far, I applaud your determination.

[ViewsAskew]

Both of you - you are truly doing such a hard thing. I hope having us all be here cheering you on helps at least a teensy bit. You're giving me courage to take a holiday .

[Orrel]

Thank you all for your support. The only helping agent I have is clonazepam (0.2 mg) I take 1/2 pill
at supper and 1 pill at bedtime. It doesn't do much for sleep until the rls calms down. I hope it
doesn't interfere with the resetting of the dopamine receptors.

[JimmyLegs44]

Had my doctor's appointment yesterday. This was my third appointment in the last 3 months to get off pramipexole and see where my symptoms are at. The first 2 attempts failed (1st attempt he gave me gabapentin to cover the withdrawal symptoms, which they didn't; the 2nd attempt we tried a very slow taper over 10 weeks...I made it 2 weeks and 1 day).

In preparation for the appointment, I've tapered down over 3 days from .375 MG of pramipexole to .25 MG. I probably averaged 4 hours or so of fragmented sleep per night (30-60 minutes at a time). Pretty severe daytime symptoms also. I thought the last time I tried this, my daytime symptoms were actually improved, but I probably remembered wrong. My plan now is to go off the pramipexole cold turkey, starting tonight. From what I understand, a reduction of .25 MG every 3 days is considered safe, so I believe I should be OK there.

Anyway, my doctor prescribed 10 pills of MS Contin (15 MG) to help with the DA withdrawal symptoms. He was reluctant to go beyond the 10 pills, as he had concerns about addiction (don't they all?). This will cover sleep only; I'm sure my daytime symptoms will still be severe, but at least I can move around a little to help with those symptoms. I will be testing Dr. Earley's and Dr. Allen's theory about opioids simply keeping the withdrawal symptoms at bay. The way I see it, I have nothing to lose. I just need to be very careful with the opioid. I plan to take the MS Contin for the first 7 nights only, to get thru the worst of it, and see how things are after day 7. I also want to keep a few on hand for when I will be away from home for a couple of nights in a few weeks. I will continue to post updates.

[Orrel]

I have been off the DA for about a week. I am using only a small dose of Clonazepam.
When I first was off, my symptoms were worse than when I was on the Neupro patch,
which was to be expected. However, I was surprised they weren't even worse than what they were,
given what Dr.E. says in the Webinar and what he (and others) say elsewhere. I thought maybe I was
lucky and I looked forward to things getting even better. However, they don't seem to be and
at night seem worse than when I started the drug holiday. My theory is that when I first
went off the Neupro patch, there was still some residual DA in the system which has now dissipated.
Any thoughts on this theory??

[ViewsAskew]

Jimmylegs - so glad he gave you some, at least!

Not sure 10 pills will be enough to test Dr E and Dr A's theory... If one per night works, you may not be out of that worsened period. For some people, who knows why, it's literally just 4 or 5 days. While I only have one subject - a past member here - the longest I'm aware of (not using anything) was 15-18 days. I can't remember the exact number as it was almost ten years ago. Brandy used nothing, was augmented, and her symptoms were increased for over two weeks.

Dr B says, in his experience, without using opioids it can last up to 3 weeks.

I'm not trying to be a pessimist, lol....just wondering why the discrepancy. Does it depend on how long we've been augmented? The percent increase over the original? No idea....

My guess is that if you get to ten days, though, even if your symptoms are increased, it will be greatly reduced from what now. You may still have symptoms. We just won't be able to tell if you'd have them even if you hadn't used the opioid (at least that's my guess).

[figflower]

Hi Orrell, Jimmy and Views, this MAY help explain why for a time the RLS is worse just when you think it should be getting better. Lack of sleep down regulates our d2 receptors. http://blogs.scientificamerican.com/sci ... -dopamine/

I prefer the other side of the coin. Sleep up-regulates our receptors. So if life can afford you the pleasure, take a nap during the day when RLS is less severe. Unlike the rest of the world where napping allegedly interferes with night time sleep, I think naps help those of us with RLS. I will try to find the article about how sleep up-regulates receptors.

[figflower]

http://www.nature.com/tp/journal/v5/n4/ ... 1546a.html

This one is great. Caffeine upregulates D2 receptors. This certainly helps me to understand why some people swear that coffee helps their RLS and why for some, stopping coffee either triggered or worsened their RLS.

Not to sound like a broken record, but why not try every non-toxic substance out there...once. Coffee or better yet an Excedrin. Potassium, iron bis-glycinate, mustard, binaural tones, tonic water (would be my last choice since quinine is a dopamine agonist). Even a strong laxative, like citrate of magnesium. They come in single serving bottles - lime or strawberry flavor I believe. A purge will temporarily lighten the level of bacteria in your gut which some say is somehow tied in to RLS (at least for some people.)

[figflower]

http://www.medscape.com/viewarticle/543705_5
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3977075/

Last two articles, I promise. I was looking for the article I read a while back that indicated that iron availability is lowest at midnight and doesn't really start to climb until about 3am. I don't think it was a scholarly article anyways. At any rate, these articles indicate that everyone's iron availability drops by 50% come evening. And one of the articles basically says who cares about the circadian rhythm of serum iron levels, what about organ iron levels. They noticed a correlation between severity of RLS and brain iron levels. The lower the brain iron the more severe the RLS.

Figure out a way to get unbound iron (I think it's called plasma iron) to your brain at night (every night that you have an attack) and you just may get some relief (albeit temporarily), because apparently our brains have very little capacity to call up iron once it's bound/stored which I believe is known as serum ferritin. I think ferritin is iron that is bound up with something else in the blood.

[Yankiwi]

In response to Figflower's belief that “Sleep up-regulates our receptors”, I’d like to say that I don't begin to understand how dopamine affects my body. What I do know is that, with sparing use of various medications, including a small amount of Ropinerole and a few periods of stretching during the night, I've been sleeping well for a few months and can even enjoy being in bed. But put me in a movie, a long car ride or an airplane, no matter how much sleep I've had, my legs go bonkers without drugs. So for me, with fairly severe RLS, knowing scientific theory about how dopamine works doesn't help.

[JimmyLegs44]

First night with no pramipexole last night. Took 15 MG of MS Contin at 8 p.m. to cover the withdrawal symptoms. Unfortunately, it did not do the job. I got zero sleep. Not what I was expecting. Looking at the dosing schedule in the "Clinical Management of RLS" book, it looks like MS Contin is dosed at 15-30 MG for "normal" RLS. I have to imagine it should be dosed higher to cover the nasty withdrawal symptoms. I hate to think what my symptoms would have been without the 15 MG that I took.

[ViewsAskew]

Have you ever written to Dr Buchfurher? He answers most questions very quickly unless he's traveling. somno@verizon.net. He would tell you what dose he thinks would work. I know his preferred drug is methadone because there is no associated high, reducing addiction risks, and for a few other reasons, but he would likely know how this other opioid would work.

I tried three times to stop - twice without anything. I honestly cannot describe how awful the symptoms were - you have my empathy.

[JimmyLegs44]

Thank you. I have not contacted Dr. Buchfurher, but I might just do that. Frustration is setting in. I'm not sure I'm going to make it. Last night was not much better. As bad as the nights are, the days are worse. I've had to take yesterday and today off work, because I cannot sit down, and of course I am a zombie from the lack of sleep. There's not much I can do, actually, other than stand and go for walks. I'm way too tired to trust myself to drive, or even ride my bike. I walked my dog this morning, and just about fell over a few times. It felt like I was sleep-walking.

I'm very disappointed that the opioid is not covering my withdrawal symptoms. That was my hope and expectation, but clearly my PCP is not comfortable prescribing a sufficient dose, so he apparently prescribed a low dose to simply LESSEN my symptoms. When I was debating whether or not to use an opioid, I asked my PCP if a person can go 4-6 days without any significant sleep. His response was "you won't go that long, you'll just fall asleep". Clearly he doesn't have a firm grasp on RLS.

I'm at the point (again) that I just can't see losing another night's sleep. I'm questioning if this is worth it.

[Polar Bear]

If you were to write to Dr B today it is just possible that you might be lucky enough to get a reply from him today.
Fingers crossed he is not on holiday.
(On occasion I've waited a couple of days but also I've had a very speedy response).
His response might be enough to get you a little bit further. You have come so far.

As for your PCP say that you would just fall asleep !! I am speechless.
On one occasion I was sleepless and walking for 3 consecutive nights and there was no withdrawal involved.

Please heed Views advice.... write to Dr B.

[ViewsAskew]

He often responds around 8 or 9 PM Pacific Time - so here in Chicago, I get answers around 10-11 PM. I often get a response the same day, but not always. I can't remember if I've tried him on a weekend or not.

Most doctors do not really "get" what this is like. I've been trying to explain to my MIL for 15 years. Recently she started to get neuropathy - she has diabetes. I told her that while it felt different, it was similar to her neuropathy in that you couldn't ignore it, go to sleep with it, etc. She finally sort of understood. After 15 years.