Dropping Sinemet to excape augmentation

Zacsdaddy · Post by **Zacsdaddy** » Thu Jul 19, 2007 5:55 am

I'm not exactly new to the board but I post so rairely that I have to renew my membership everytime I post.

But back to the subject.

I started taking Sinemet about as soon as it became available for RLS. No information was available at that early date about augmentation and it hit me the day after I started

. But it provided some relief so I've stayed on it for all these years.

Of course it soon became necessary to take more and more to get the relief needed to sleep so I tried that. Soon I was taking so much it started causing untold problems. I had to cut back to just 1 25/250 pill just before bedtime. It took quite a toll on me and was the first time I suffered withdrawls from anything. :oops:

Then Requip hit the scene. I waited several months, hitting this site constantly, searching for any serious problems before trying it. After seeing little to no problems I asked my Doctor to let me try it. We've worked my way up to 4 .5 pills a day coupled with a half of a 5/500 Hydrocodone. But I still need the Sinemet to get to sleep at night.

So let's summarize. I take 1 .5 Requip + 1/2 a 5/500 Hydrocodone at 6am, at 10am, at 2pm and again at 6pm. This controls, for the most part, my symptoms during the day.

When I get home I usually get a HUGE attack of rebound augmentation that last about 45 minutes to 1 hour and 15 minutes.

This occures anytime from about 5:30pm until 11pm. Usually there's just one occurance but lately there has been 2 on some days.

I then take 1/2 of a Sinemet + 1/2 a 5/500 Hydrocodone about 9 - 10pm. I usually get to sleep anywhere from 12am to 1am. I wake up restless about 2:30 to 3am and take another 1/2 Sinemet + Hydrocodone in the hopes of getting back to sleep by 4 - 4:30am since my alarm clock goes off at 5:50am. I'm usually awake before the alarm goes off.

Now after spending over a year trying to find a simple list of drugs and an explination of their functions and uses and side effects, and spending a day and a half reading and digesting the information here's what I've decided to try.

The Sinemet is causing the initial augmentation that caused me to take Requip to battle the daytime episodes which also cause rebound so since I've all but eliminated the middle of the night Sinemet I'm now going to eliminate the evening dose also. Now I'm aware of the possiblity of the symptoms worsening for several days after getting off the Sinemet but I feel that this is necessary to allow me to cut back if not eliminate the other drugs.

I feel that these side effects are feeding on each other and causing part of the problem.

So with my wife prepared and the knowledge that I may miss out on work for a few days and my need to avoid interaction with my children for awhile I'm off. Possibally completely off but no other course seems to make since. :roll:

Input is requested, I'm a big boy, former Marine and realize that your opinions are nothing to base my decisions on, etc. So fire away! :lol:

Zacsdaddy

Neco · Post by **Neco** » Thu Jul 19, 2007 11:25 am

Drop the Sinemet completely ASAP.. If you have to, up your Hydrocodone dose until your are comfortable enough.

That is probably the best solution for you. You could continue taking the Requip if you want, but as they are the same kind of drug, they may both be causing the augmentation.. You won't know until you get off the Sinemet completely.

I don't think upping the hydrocodone to 1 or 2, is going to raise any eyebrows as long as you are able to keep it around that level when everything calms down.. I get horrible augmentation from Sinemet and Mirapex too, and I was treated with Hydrocodone for roughly 3 years until I could no longer manage my supply (now I take Tramadol, which has it's own can of worms).

You may want to discuss this with your doctor if you feel uncomfortable about it. He's already letting you take the opiates after all, and the Mayo Algorithm is pretty clear that they are good at casting a wide-net for many people and are a good treatment (though they still don't help some).

My doc tried to keep me at around 4 - 6 5/500 a day. Whether that is high or low in anyones book is not my concern I guess.. It did work for me, until addiction kicked in. But as long as you are responsible and honest with yourself I wouldn't worry about it.

Post by **ViewsAskew** » Thu Jul 19, 2007 6:49 pm

Agreed with Zach - drop all dopamine related drugs - get off the Sinemet, don't take Requip or Mirapex, either.

This may be awful. When I did it, I tried Percocet - didn't touch it. Then Vicoden - it and I didn't get along. So, then to Methadone. This got me through it. I tried stopping twice without opioids and couldn't get through it.

But, one piece of potentially bad news. There are four of us that I know of that have permanently worsened RLS after having augmentation. I had augmentation for almost two years before I finally stopped the Mirapex (I'd also been on Sinemet and Requip, augmenting on both). That was too long for my body. My RLS is now 24/7, though the methadone controls it pretty well most times.

Sorry you get zapped with your membership, Zacsdaddy. Not sure about the Foundation, but the policy I follow on deleting old memberships is that they have to have been inactive for over a year (or never active) and that they have to have visited only once - the first day they signed up. That should prevent this from happening in the near future to you :wink:

rfishburn · Post by **rfishburn** » Thu Jul 19, 2007 9:52 pm

I barely had daytime symptoms before sinemet....

slewis2935 · Post by **slewis2935** » Fri Jul 20, 2007 1:49 am

I do agree with all of you about the Sinemet augmentation and increased symptoms, especially of daytime RLS.

Interesting about the narcotics aiding in symptomatic relief. I was a morphine and heroin addict for over 15 years, and I only started having symptoms of RLS after complete detox from opiates. Apparently I'm one of those "lucky" people who have damaged their brain's ability to store and produce dopamine, due to my heavy opiate use for all those years.

I find it easy to believe that drugs like hydrocodone and methadone would relieve RLS symptoms. When I first started withdrawal from morphine, for example, I would get terrible RLS, causing me to go back on the morphine once again, and the RLS would disappear immediately. This is an even worse situation to find oneself in, even worse than dopamine agonist augmentation, because now you have two problems; a) the RLS is always there, and you must keep increasing the dosage of opiates when your tolerance hits a plateau. b) Now you have an addiction to opiates, which is extremely difficult to overcome, trust me.

So I'd rather put up with the augmentation and stay far away from the opiates if it were me. At least the dopamine agonists don't have me doing stupid things like I used to, forging prescriptions, etc. when my MD refused to prescribe opiates any longer. That's how serious the narcotics can get. I never in a million years want to go back to that crazy place in my life, for I had no control over the addiction.

Just a thought... everyone is different. I know some of you will never get to that point, but just in case you ever find yourself there... God forbid.

Zacsdaddy · Post by **Zacsdaddy** » Fri Jul 20, 2007 2:42 am

Thanks for the input everyone.

Yes I know that Requip is also a DA but it does not seem to cause augmentation as bad as the Sinimet (at least to me). One of the chief trouble-shooting lessons I've learned is change one thing at a time. Otherwise you don't know exactly what made the difference.

Plus the fact that I swallowed a Requip just before I read ya'lls posts. :cry:

According to the drug info I've read here Requip attaches to different receptors than Sinimet so maybe that's what makes the difference with me. Or maybe I've had augmentation soo long that I cant tell an increase since I started Requip.

In any case I'm going to stay with changing one thing at a time for the present. So here's how it's gone so far.

Last night no sleep that I can remember. I tried from about 11pm until about 4:30am taking breaks to: Take a hot bath and soak, go for a motorcycle ride (the weather was perfect but I'd rather be sleeping) and go for a long walk around the neighborhood. Finally giving up and getting re-dressed to go into the garage and start working on the next modification to my motorcycle.

Today at work was typical. Really tired, let others know that I might be a bit more cranky but to just ignore me. Difficulty with concentration, especially memory. Fell asleep on the floor of the darkroom twice in the afternoon for about 10 minutes at a time. Told everyone if they found me there asleep and didn't like it just clock me out and leave me to sleep - hell, lock me in the building and go home if necessary, I've got a key to get out when I wake up.

Got home at about 5:10pm, stripped and climbed into bed, slept from about 5:30pm until 6:55pm. Been awake but groggy since then. Had one rather minor episode of rebound a few minutes ago - only lasted about 30 minutes.

Let's see what tonight brings.

Thanks again for joining me on this trip - living the dream!

Zacsdaddy

Zacsdaddy · Post by **Zacsdaddy** » Fri Jul 20, 2007 9:49 am

Well it's 4:45am on friday the 19th now. I haven't slept much last night but better than the nothing the night before. I got probably and hour or so between 11pm and 1am. I've visited Walmart and spent time in the garage, done 2 loads of laundry and one load of dishes.

So today I'll be at work on time but may plan on spending more time attempting to catch a snooze in the darkrooom.

Zacsdaddy

Neco · Post by **Neco** » Fri Jul 20, 2007 1:34 pm

Good luck, and don't give up

Zacsdaddy · Post by **Zacsdaddy** » Sat Jul 21, 2007 12:56 pm

I'm not giving up Zach. Thanks again for sticking with me through this.

Friday evening was probably the worst I've ever had. Was it withdrawals? Probably. Here's what took place. Spent the day at work like usual 8 - noon, lunch from noon to 1 then 1 -5. Was tired and having BIG problems with memory and concentration. Never was able to rest in the darkroom, legs too restless to sit or stop for more than about 1 - 2 minutes at a time.

As I'm trying to drive home (only 4 1/2 miles, 15 minutes tops) I get hit with the worst pain in my hips and legs that I've ever had. Managed to pull over into a parking lot and get out so I could walk around but nothing was helping relieve the pain. Walking, jumping, stomping, nothing. I spent what felt like 4 - 5 minutes trying to work it out then decided that I had to take a pain pill.

Now I'd been taking the 1/2 hydro every 3 - 4 hours all day long but had quit the Requip since about 10pm last night.

So I pulled out a full hydro and 2 Requips to take and please don't flame me for this but all I had in the car to wash it down was a flask of whiskey :shock:

I've taken to carrying for emergencies. This is the first emergency I've had since I started carrying it.

So down goes 1 5/500 Hydro, 2 .5 Requips and a shot+ of Fourty Creek Canadian Whiskey. When my eyes uncross :roll:

I climb back in the car and with rocking back and forth in the seat like a stupid teenager listening to rock music and banging on my legs I manage to drive home.

This all started about 5:05pm and the pain stayed with me until about 5:50pm when it suddenly felt like it just "washed away". Mama had supper on the table so I joined my family to eat then went to bed to attempt to sleep.

Well I must have fell asleep about 6:30 or so. Mama kept the kids quiet and I slept until about 9:45. Was it pills? Was it drink? At this point who cares? IT WAS SLEEP!

I joined the family in the living room, I was groggy as hell but feeling a little better. Kissed them good night then must have fell asleep on the couch because I woke up there about 1:30am. MORE SLEEP!

By this time I was thinking clearly a little clearer and realized that the Requip must be helping a bit with the creapy crawly legs so I took 1 Requip and 1 Hydro then got back to sleep around 2am and woke up about 6:30 this morning. This has been the most sleep I've had in one night is as long as I can remember.

Now was it just exhaustion? Was it the whiskey? Here's what I'm going to try today. Stay with the Hydro about every 4 hours, 1/2 pill at a time. Go back to the Requip at the same time. Then just before bedtime a full Hydro and Requip. This has me taking a half hydro 3 times and a full hydro once with 4 total Requips. Now if I wake up in the middle of the night as ususal I'll take 1/2 a Hydro only.

If this works I may consider trying to eliminate one Requip in the middle of the day or cutting back to the .25 pills.

I don't think I've hit a homerun yet but maybe I'm back in the game!

One day at a time....One day at a time....Dont get ahead of yourself.....breath, breath..... Sorry, it's easy to get excited and want to take on the world once you've had a decent nights sleep.

It's about 8am now so I'll take my first dose on my new schedule. I'll keep ya'll up to date on how it goes.

Neco · Post by **Neco** » Sat Jul 21, 2007 8:06 pm

So you're taking like 2 & 1/2 Hydrocodones a day ? That is very good. I don't know if the requip played a part, but when your pain suddenly washed away - that was definitely the hydro/whiskey combo kicking in to high gear.

Try to stay away from alcohol, even at that little of a dose.. Hydrocodone is also mixed with APAP (acetaminophen/Tylenol) and it REALLY **** up your liver if you do it regularly w/alcohol.. It can lead to liver failure, even in sub-toxic acetaminphen levels.

Try to cut the Requip back when you can.. and stick to around 2&1/2 to 3 Hydrocodones per day.. Keep a journal of when you take stuff, what it was, how much you took.

If this improves your treatment, show it to your doctor to get approval (unless you know you can self medicate without killing your hydro/requip prescriptions). And most importantly, stick with the schedule you have devised! And don't lose hope if it stops working down the road - this is a natural progression of dealing with RLS.. Sometimes things just stop working. But if it turns out you don't need the requip at all, down the road, you should be able to go for years on just the Hydrocodone without increasing the dose at all (or too much).

And as for your sleeping awesome that night.. It could have been exhaustion + the meds helping.. But I have INCREDIBLE endurance for this crap (it's annoying to me).. I once went 10 hours of sleep total in roughly 1 week of being unmedicated. Then I still had the energy (survival drive? lol) to WALK to my doctors office and back (2 miles round) for some Ambien - which worked for about 3 days.

Zacsdaddy · Post by **Zacsdaddy** » Sat Jul 21, 2007 9:23 pm

Thanks for sticking with me Zach. Yeah, the whiskey was definately not planned and except for this occurance I haven't touched the stuff for about a month. Then it was only 1 drink every few days, usually Sherry or Port then.

I've never had a drinking or drug problem so I'm not too worried about letting any of it get out of control.

So far today the hydro/Requip combo seems to be working as hoped. I just woke up from a 2 hour nap on the couch.

I have a wednesday follow-up appointment with a neuro that my primary is sending me to. So far the neuro has put me through two sleep tests to determine if there is any problems. I've been trying to tell everyone (including my wife) that until the RLS is under control there won't be any sleep. In all the waiting for the sleep tests to be scheduled, then having to return a second time because I slept so little the first time they never got a chance to try the CPAP machine. Rescheduling the appt with my neuro because of needing both tests first, etc. I just had to try something on my own or swallow a bullet.

But thanks to the information on this site (that I wish could have been a little easier to find, no flame intended, just my internet lack of skill finding things :oops:

) I was able to research the meds, their effects, side effects and what's expected from them. Then I rolled the dice and took the chance on changing my own meds.

So far it's been as bad an experience to go through as I expected but also had had better than hoped for results.

Now, one day at a time - or should it be - one night at a time.

Neco · Post by **Neco** » Sat Jul 21, 2007 9:49 pm

Heh yeah.. sometimes stuff can be hard to find..

And idea just sparked about maybe making a more traditional "resource" type site where things are categorized and a little easier to find, etc..

I've got gigabytes of web space and terrabytes of bandwidth I'm not using.. heh.. like ..3.5 TB and I used not even 10GB a month, haha..

Zacsdaddy · Post by **Zacsdaddy** » Thu Aug 02, 2007 3:24 am

Just a quick update on how things are going.

Still don't miss the sinemet, glad I got off it finally.

I've cut out the half Hydro in the morning and the half at lunch. That gets me down from 3 total a day to 2 total. My arthritis in my shoulders hurts a bit more but Aleve seems to take care of most of it.

Today I was so busy this morning I forgot to take my Requip this morning or take any with me to take at lunch. Did'nt take anything until 5:30pm and so far don't feel any ill effects. We'll see how I sleep.

The Neuro I went to put me on a CPAP machine and it seems to be helping. Only use it for the first half of the night but every little bit helps.

So, I may try cutting out the first Requip of the day for a few days and see what happens. I still can't sit all the way through church without hurting but we're working on that.

Zacsdaddy

Sojourner · Post by **Sojourner** » Thu Aug 02, 2007 4:13 am

Zd, I think you do/did a great job of monitoring your medication regemin to help you figure things out. I think that most here are given some leeway by their docs to make some reasonable changes in their medications. Sometime, many here know more about what they need than their docs. In any event, I hope your regemin will continue to provide you with the rls relief you need and that sleep will come. Best of luck.

eastbayrls · Post by **eastbayrls** » Mon Aug 06, 2007 11:06 pm

My doc just put me on this drug. I got my script today, after reading all this, I am a little worried about how this is going to effect me.

I told my doc, i wam worried, but I will still try it.