How much Vicodin?

[dayandnight]

Not doing well with the iron infusions. Will find out my levels this Friday. Still on between 2 and 3 mg Requip. Having to use up to 30mg of Vicodin between 4Am and 7Pm each day. Tough to get through a work day with that onboard. And yes I have become dependent on it. If I try to cut back, the withdrawl symptoms start within about 6 hours. Even Dr. B. has in my chart that I have become dependent. So how much Vicodin does anybody else take? I have gotten off of Vicodin twice before. Once for 30 days and the 2nd time for two weeks. The flip side is that the Requip starts to ramp-up perportionally. Then to get the Requip dosage down, I have to start the Vicodin again...and the cycle continues. Just interested in the amount others are having to take. I hate all these meds. You never really feel clear-headed or whatever normal is suppose to feel like. Ive been in some sort of medicinal fog for 8 years. Oh well, at least we don't have ALS.

[badnights]

Oh well, at least we don't have ALS.

the way you put it was so funny I laughed.. dunno why it caught my funny bone.

I can understand not wanting to be in a fog. I am lucky in that I don't think I have medication fog - my fogs are all from lack of sleep. Not that that's any better.. but I can't blame my meds.

I don't think you should have worries about being dependent. Dependence is a price to be paid, and it's a pretty low one, not affecting us in our day to day lives, as long as we spread the medication out over the day to avoid withdrawal, and never forget our meds or lose them or anything. All of which is a burden, but.... dependence per se is not the problem. It's not like addiction, where you take more than you need and your usage keeps escalating.

I wish the iron was helping you more. Some people don't seem to have their symptoms relieved as much as others.

I've never used Vicodin, so I can't help with dosage. If you stay on it, please try to get plain hydrocodone, rather than Vicodin, which contains acetominophen. (no point ingesting drugs that have no purpose, that your liver or kidneys have to deal with)

[ViewsAskew]

Wow, in my drug induced state a few days ago, I thought I replied to this....sorry I didn't!

I've also never taken Vicodin, so can only go by the Clinch Management of Restless Legs Syndrome. 10 mg max per 6 hours, 40 mg max per day.

I can only say what I did - I had issues with tolerance (not dependence); kept needing more if I only took an opioid. I had issues with augmentation when I only took a DA, needing more over time. For several years, I alternated them frequently - two days of one, two days of the other. Then I went to one day each. Doing this prevented dependence and tolerance of the opioid and also prevented tolerance or augmentation of the DA. You can switch as often as daily or as infrequently as 2 weeks to prevent these issues.

In some ways, this did help me have fewer symptoms of drug fog - because I was able to take lower doses. But it wasn't perfect. As you noted, it's not fun taking all these things. Another thing that really helped me is that I spread my opioid over the whole day - I found that I had symptoms of withdrawal during the day (tired, fuzzy, foggy, irritable, etc) and felt much better once I took them. I didn't actually have to take more, just spread them out differently.

As Beth said, it's probably wise to talk to the doc about a switch to another opioid if you decide to take it regularly. No reason to put the acetaminophen in your body. I've tried all but two opioids and definitely am happiest with methadone. It lasts long and has the fewest side effects for me - but that's me! Just saying trying others may be helpful to find something that bothers you less.

[doety]

I take Vicodin every other night, along with Mirapex. Right now, nothing is going well.
I'm on an "epic adventure" -- left Denver 2 1/2 weeks ago, heading south. I'm now at Orange Beach, AL....condo right on the beach...but the bed has peaks and valleys and sleep is miserable.
I knew before I started this that the Mirapex was augmenting. But I wanted to do this so bad! I just turned 70 two days ago (and still can't say it out loud), and will be getting together at the end of the month in Charleston with friends I worked with in the '70s. I thought I could deal with it. The last two days, I've gotten WEDS in the early afternoon. It feels like nothing I do will make it stop. What I had been doing at home, and which worked fairly well, was to take the Tylenol 3 with Mirapex every other night and with Vicodin every other night.

Right now, I think I'm getting about 4 hours sleep a night. I'm considering hunkering down some place and trying to withdraw from the Mirapex. I've done it before, and I know I used Methadone, but I've forgotten exactly how it went. A couple of days ago I fell asleep while driving, just for a second. Right now I'm questioning my sanity is doing something like this. Suggestions for withdrawing? Would appreciate help; not sure what to do next. THANK YOU AND HAPPY MOTHER'S DAY.

[sniel2000@yahoo.com]

Hi....Have had RLS all my life. I am 70 now...started taking requip about 4 years ago. Over the past year my RLS got so bad I thought I was going crazy....the worst sensation ever....every night at 8 PM my legs would start up....also was getting it in my arms and hip area. I kept thinking....is this the way life is going to be...can't sit still, can't read, can't go out to dinner, etc. So I stopped taking the requip. It was tough for the first couple of weeks...not much sleep...but all of a sudden, no more RLS. It has been 4 months now and it is starting to return...but it is not near what it was when I was on requip. But for some reason, unknown to me, I became afflicted with horrible fatigue at the same time that I got off the requip. I am a little better, but not much. I have to take naps and fortunately, I can sleep later in the morning. I do not get the RLS every night....but every few nights. It's tolerable. I don't know what to do about the fatigue....I just keep going. I am going to a sleep clinic next week...but I refuse to take any more drugs like requip. Right now I am taking 1 Vicodin at bedtime...it gives me a couple hours of sleep...but it doesn't last longer that that. I don't want to take more than one, although my doctor says 2 or even 3 are OK. I am going to try a few things I haven't tried...like a Gluten free diet, folic acid and magnesium supplements. We'll see. Also going to get some poppy seeds and plant them.

I believe the requip or any of those drugs wreak havoc with your brain and and right now my brain wants to sleep all the time. Requip was wonderful at first but what it has caused is horrible. Stay off this stuff unless you are desperate.

Restless in Napa

[rthom]

Don't forget to drink lots of water, to elp with the fatigue. Good luck

[ViewsAskew]

I take Vicodin every other night, along with Mirapex. Right now, nothing is going well.
I'm on an "epic adventure" -- left Denver 2 1/2 weeks ago, heading south. I'm now at Orange Beach, AL....condo right on the beach...but the bed has peaks and valleys and sleep is miserable.
I knew before I started this that the Mirapex was augmenting. But I wanted to do this so bad! I just turned 70 two days ago (and still can't say it out loud), and will be getting together at the end of the month in Charleston with friends I worked with in the '70s. I thought I could deal with it. The last two days, I've gotten WEDS in the early afternoon. It feels like nothing I do will make it stop. What I had been doing at home, and which worked fairly well, was to take the Tylenol 3 with Mirapex every other night and with Vicodin every other night.

Right now, I think I'm getting about 4 hours sleep a night. I'm considering hunkering down some place and trying to withdraw from the Mirapex. I've done it before, and I know I used Methadone, but I've forgotten exactly how it went. A couple of days ago I fell asleep while driving, just for a second. Right now I'm questioning my sanity is doing something like this. Suggestions for withdrawing? Would appreciate help; not sure what to do next. THANK YOU AND HAPPY MOTHER'S DAY.

I wish I had some suggestions - stopping a DA when augmented is just plain awful. If you don't have to be anywhere for a couple weeks, you could hole up, stop the DA, use opioids, and hope for the best. You might get lucky and it would only take a 5-7 days for the worst to pass since you haven't been augmented that long. You can either cut back slowly on the DA or stop it cold turkey - at a low dose (unlike Parkinson's patients), it's not an issue to stop cold turkey. Any strong opioid should do the trick - you could use something like tramadol during the day to limit how much of the strong opioid you take. Do you have stuff with you to use?

[doety]

I finally got some sleep last night by taking Vicodin early, not waiting until nighttime. Unfortunately it made me run at the mouth. I'm in the deep South and started telling old classmates what I thought about various things and soon they were quoting Bible verses at me. Sigh. Didn't mean to cause waves.....anyway, Withdrawing would be so hard right now...I'm going to try and hang on until I get home. Then, Ann, I will try what you said. Thank you all.

[ViewsAskew]

I finally got some sleep last night by taking Vicodin early, not waiting until nighttime. Unfortunately it made me run at the mouth. I'm in the deep South and started telling old classmates what I thought about various things and soon they were quoting Bible verses at me. Sigh. Didn't mean to cause waves.....anyway, Withdrawing would be so hard right now...I'm going to try and hang on until I get home. Then, Ann, I will try what you said. Thank you all.

I am laughing with you about the running at the mouth. My values are so different than many people I know - I pretty much only talk to my husband, mom, sister, and best friend, lol. I haven't yet figured out how to be with people who are very different than I am in values and beliefs and know how to have conversations on anything except the weather .


Waiting seems to make sense. Glad you got some sleep.

[badnights]

doety
I laughed too I hope you can hang in there, you probably need more opioids than you have if you stop the pramipexole; not something you want to do while on the road unless you have a good supply. (tho if you did have lots, you might actually be better off than you are now...) But you shouldn't use up your prescription before it's due, because that raises all sorts of red flags...

[badnights]

sniel2000,

Have you heard of augmentation? It's a paradoxical effect of levodopa drugs (Sinemet) and dopamine agonists, or DAs (a class of drugs that includes pramipexole/Mirapex and ropinirole/Requip ) that most doctors are not aware of. After a certain time on the drug during which it helps you (days for some people, years for others), it begins to cause your symptoms to get more intense, to begin earlier in the day, to begin sooner after you stop moving, and/or to spread to other body parts. This can be mistaken for natural progression of the disease, but it usually happens faster.

Unfortunately, most doctors who are aware of RLS/WED know enough to prescribe DAs, which have been considered the drugs of choice in treating it, but they aren't aware of the phenomenon of augmentation. When augmentation sets in, they do what they do with every other disease and drug: they increase the dose. This makes the augmentation worse; but being completely unaware of the problem, they may increase the dose over and over again, at the expense of the patient who suffers horribly and needlessly. Eventually, the doctor gives up and refers the patient to a specialist (although in some cases, the over-prescribing doctor IS the specialist!!).

One of the foremost RLS/WED specialists in the world recently estimated that 75% of all referrals to RLS specialists turn out to be cases of severe augmentation. He also suggests that DAs should be re-considered as drugs of choice in treating this disease.

In stopping the Requip, you unknowingly stopped the cause of your biggest problem, I think. Now that you are getting a sleep study and seeking treatment again, know that the drugs to avoid are the DAs. They can be effective, especially in combination with other types of drugs (anti-convulsants or opioids) in low doses, aslong as your ferritin level is high enough (low ferritin is associated with augmentation on DAs, also with more severe RLS/WED).

My signature contains links to more information on augmentation and ferritin.

Your doctor is quite right about the Vicodin. The hydrocodone in it is effective in controlling WED symptoms. The brains of WED/RLS patients have been shown to contain less enkephalin and endorphins (opioids produced by our own bodies) than those of people without WED, so it's quite natural to need opioids to make the symptoms go away. Poppy seeds contain opioids. This class of drug is not the full answer, and many of us use other drugs or combinations of drugs... the paper by Buchfuhrer in the second link in my signature discusses combination therapy.

Addiction is less common among RLS/WED patients taking opioids than among cancer-pain patients, and even less than in the general population.

I hope this is not too much information; I hope it's somewhat useful. Best of luck with treating this disease - oh, I meant to add, there are all sorts of things in the non-pharma section; if you spend a bit of time in there, you will be able to pick out the things that work for many people , and might be worth trying. Hot baths or cold baths; squats, ankle raises, and leg lifts. Sleeping positions.

I have glossed over the ferritin issue, but I shouldn't have; if your ferritin is lower than 100 ng/ml, you might feel some symptom relief simply by taking oral iron; if it is below 20, you (almost) definitely will. I take 600 mg ferrous sulfate daily.

Vitamin D has been shown to affect RLS severity as well; so it might be good to test it, tho almost no one in N America is high; a level of 20-30 ng/ml is recommended. I can't seem to keep mine high enough so I take 4000 IU daily.

[doety]

Good for you for posting a clear statement about augmentation. Before I left on my trip, I sent my doc something from one of the websites and maybe even the Night Walker about it. I think every neurologist who treats us should belong to the foundation, receive the publication and maybe even be on the discussion board website.
First, of course, we have to education ourselves and all our RLS/WED buddies who suffer. We can't get mad at the docs (well, we can and do)...the truth is they know so little and so little is known. They just do what they've been taught (increasing the dosage).

[badnights]

You're right, doety, education is key, probably more necessary in this disease than most others. I don't know if a phenomenon like augmentation is associated with any other disease. It's unusual, and no doctor is going to be able to guess it might be happening if he's not first aware of its existence.