Needing advice on getting off hydrocodone

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ViewsAskew
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Re: Needing advice on getting off hydrocodone

Post by ViewsAskew »

sdcowgirl wrote:Wow, don't know after what I went thru for 5 hours that I could handle 5-15 days. I think my husband would have me committed. I am actually at 1 mg right now but would really like to drop that dosage. When I went on methadone, it was for that purpose but only got it down 1/2 mg before having to go off the methadone.


It isn't fun at all. But it likely is the ONLY way out. You have to stop that drug, no matter what. It is very likely the cause of the majority of your symptoms.

If you can take off ten days, if you work or have obligations, you can do it. You will be exhausted. You will hate me, most likely lol. But, eventually you will find yourself again - and that is worth it.
Ann - Take what you need, leave the rest

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debbluebird
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Re: Needing advice on getting off hydrocodone

Post by debbluebird »

It sounded to me that you are augmenting. I agree with Ann in how to proceed. I've done it. It's not easy, but it was worth it.

sdcowgirl
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Re: Needing advice on getting off hydrocodone

Post by sdcowgirl »

I'll give it some serious thought..... but it scares the daylights out of me. Don't know if my family can handle it.

figflower

Re: Needing advice on getting off hydrocodone

Post by figflower »

Oh my lord cowgirl if it were me (and you're not me) I wouldn't even dream of stopping anything cold turkey until you've addressed that disc. That disc is pressing on a nerve. Your RLS trigger is still there. When I gave you my recommendations I thought the disc had been addressed. My trigger was melatonin and benedryl and Tagamet. My RLS was not of this world. I think only my eyelashes were spared. Sleep was impossible. The iron provided nightly relief and by day the RLS disappeared. There is no way I could have stopped the iron unless you gave me something else. And there was no point in stopping the iron just to see how bad my RLS was without it. It was horrendous, period. Once I stopped these substances then I went back to baseline RLS which was mild and intermittent my whole life until I started these substances. And once your trigger is addressed and resolved then I would start rethinking my approach to treating any residual RLS symptoms. The drugs are there for you and if it were me I would continue to let them be there for me. Instead of cold turkey try eating only 500 calories a day for a few days ( with doctors permission) and see if you can reduce meds for the simple reason that you feel better. Taper down as you see fit, or not ,while you're waiting for your surgeon to tell you how he plans on getting that piece of disc off that nerve.

ViewsAskew
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Re: Needing advice on getting off hydrocodone

Post by ViewsAskew »

If it sounded like I said to stop all RLS medications cold turkey, that is not at all what I meant or thought I suggested. Once augmented, continuing to take a DA makes things horribly worse. Stopping that drug could help you tremendously, sdcowgirl. If you can take a strong enough opioid - just for a couple weeks - you can get through the period of increased without many symptoms at all. It sounded to me as if you wanted off all your meds, though, so I was sharing one way to do it. Once you stop the DA, you can decide, with your doctor, what to do. You can then stop the opioids, too, try another drug, or do other things.
Ann - Take what you need, leave the rest

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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.

sdcowgirl
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Re: Needing advice on getting off hydrocodone

Post by sdcowgirl »

Thanks, I would LOVE to get off both these drugs but realize I'll never be drug free. It's debatable which drug (Mirapex or hydrocodone) is causing me the most grief right now. When the RLS got so much worse this summer, I asked my physician if I could up the hydrocodone. He reluctantly did but it made no difference, still had severe RLS.
I'm sure he's not going to let me go on to something stronger (probably couldn't prescribe it anyway). I wish I could find something that would replace them both but that's just wishful thinking.

debbluebird
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Re: Needing advice on getting off hydrocodone

Post by debbluebird »

I really think it is the Mirapex. Like Ann said, once you augment, it only gets worse. Sorry you are going through this. We have both been there.

sdcowgirl
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Re: Needing advice on getting off hydrocodone

Post by sdcowgirl »

I'm sure it is and I've tried getting off of it in the past (with narcotics) to no avail. Now the narcotics are causing problems, too! Just wish the RLS would go away! I've actually cut the hydrocodone use in 1/2 and it hasn't changed a thing..... but neither did upping the dosage. Thanks for your posts!

ViewsAskew
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Re: Needing advice on getting off hydrocodone

Post by ViewsAskew »

I think this is a Robert Frost moment....the only way out is through.

And, through is going to truly suck. Figflower has an excellent point. You do have other issues, so you do need to consider them. If you work, it's very hard to do. If you can take ten to 14 days away from your responsibilities, you will be miserable, but once you are on the other side? You will likely not regret it.
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.

badnights
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Re: Needing advice on getting off hydrocodone

Post by badnights »

COwgirl, I feel for you. You're almost surely augmented on Mirapex. Check the augmentation criteria and see if you meet them. We can help you interpret them if they;re not clear.

The only solution if you're augmented is to get completely off the mirapex. Decreasing the dose will not help, and tapering to zero will just make the misery last longer. Your body is still augmented as long as any Mirapex is still in your system, so the only sensible way to do it is cold turkey, unless you;re on a dangerously high dose which I think you're not. (Check with your doc)

To stop the mirapex is only posible in one of two ways. The way of pain is to put your entire life on hold, suffering torture of hell for 3-5 days, followed by gradually decreasing torture for days to weeks after that, during which time you will not be sleeping much and therefore will not be able to think clearly an therefore may go back on mirapex thinking it's a reasonable way out of the torture. Thereby defeating all that hard work. Some of us have succeeded this way. The key is not expecting anything of yourself while it's going on, and whoever is around you must understand the pain you'll be experiencing and be quietly supportive. The more they understand the better, in fact.

The other and much better way is to have a physician prescribe a potent opioid for the duration of the withdrawal. If you had cold-turkeyed last time, the methadone would have seen you through before its side efffects kicked in, I think.

I suspect you will need an opioid longterm as your main med (but I Would like to go off on a whole other topic here - dietary changes can be very helpful). There are opioids you haven't tried that you may not react poorly to. I use hydromorph contin. Other opioids include oxymorphone, levorphanol,meperidine, morphine, propoxyphene, Fenentyl, and Tramadol, which is an opioid-like medication. Not an exhaustive list. So there are lots of options, to find one that does not cause problems.

When you tried methadone, were you still on the Mirapex? You may not react the same way when you aren't.

Despite what Figs says, the high iron stores indicated by high ferritin counts DO have an effect on brain iron. No one is clear how - one doc suggested to me it might be nothing more than iron pushing through the blood-brain barrier down a concentration gradient. The docs at Johns Hopkins who pump iron dextran into peoples' veins see incredible results in terms of lowered symptoms (and I also see results due to my oral iron), so presumably that blood-borne iron makes it way from the bloodstream to the brain somehow. So - let's not knock the effort to raise ferritin or iron stores. There is also well-documented evidence that higher ferritin is linked to lesser symptoms, and less chance of augmentation on a dopamine agonist like Mirapex. Raising ferritin seems to work well for us.

The iron bis-glycinate is worth a try. I have heard that chelated irons are absorbed better (even though a couple of comparative studies suggest no advantage over ferrous sulfate - http://ajcn.nutrition.org/content/72/6/1592.full and http://www.ncbi.nlm.nih.gov/pubmed/24152889).

If you're going to take anything to your physician, take him something written by a fellow physician. As soon as he sees a phrase like "receptors hurl dopamine down our spines..." he will stop reading (if not because of the hurling, then because of the factual error -receptors do not transmit, they receive). My signature below has a link that leads to a post where I've collected a number of useful papers having to do with augmentation and its treatment. I gave my physician a copy of the little green book, Clinical Managment of RLS (2nd edition is the little blue book; an extract from one of them is in my signatre). Other people have brought photocopies of it, or printouts of Buchfuhrer's paper or other papers. If you present it to your physician with decent respect for his/her greater knowledge, he might welcome it. Just tell him you were directed to this paper by someone on a discussion board, and could he take a look and tell you if it's legit, and what he thought of the contents? Have the relevant contents highlighted.

Some docs don't respond well, but the attitude you have when you present the material can increase the chances of an open-minded response.

I know you'll get this sorted out. You have all sorts of ammunition now, and hope, which is massively important! Good luck.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

badnights
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Re: Needing advice on getting off hydrocodone

Post by badnights »

Figs, you have me musing again. The number of dopamine receptors we have has to be considered in combination with the amount of extra-cellular dopamine, the rate of dopamine manufacture intracellularly, factors affecting manufacture (that's possibly where the iron comes in) and re-uptake, factors affecting the construction and destruction of receptors, types of receptors (D2, D3..) and so on. To say that up-regulating our dopamine receptors will solve RLS might be too simplistic, even if dopamine were the entire story. Which it clearly isn't - ref. previous posts about the involvement of at least the endogenous opioid system, glutamate, histamines, hormones, oxygen saturation controls, and the whole circadian system.

I have a niggling feeling that you shouldn't be calling metal ions agonists and antagonists of various receptors. These ions have channels which allow or disallow them to pass through the cell membrane, and sometimes the action of an ion passing into the cell can counteract the action of a neurotransmitter binding to a receptor, but I am not sure if that means the ion can be called an antagonist of that neurotransmitter. Admittedly, I didn't take the time to investigate, so you might be right.

Re dopamine bouncing from neuron to neuron, nope. We hope there's dopamine being manufactured in the neurons down the line, because the stuff that just became bound to this neuron is either getting released back into the synapse it was floating in, or sucked into the cell it became bound to, but it is noway travelling to the next neuron. What travels is an electrical impulse, which perhaps will stimulate release of different dopamine molecules at the far end of the neuron. A molecule can't travel anywhere near fast enough to get to the other end of the neuron in time to do any good.

That said, your analogies are colorful and graspable, and with a little more work on understanding the details, you could make some more-useful analogies for us.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Rustsmith
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Re: Needing advice on getting off hydrocodone

Post by Rustsmith »

Looks like it is time for another chemistry lesson on iron.

When we take FeSO4, the pill dissolves in the stomach to release iron ions and sulfate ions. Once in the intestine, the iron ions can be adsorbed into the blood stream or they can react with other things in the intestinal stream to precipitate iron oxides or sulfides. The precipitated oxides and sulfides are not available for adsorption into the blood.

Iron bisglycinate is a chelated form of iron. What this means is that it does not break up into iron ions in the stomach, but dissolves to release iron bisglycinate molecules. The iron bisglycinate is then available to be adsorbed into the blood stream.

Chelation is the reason why doctors recommend taking Vitamin C along with iron sulfate. Vitamin C, also known as ascorbic acid, will also chelate iron. When iron sulfate dissolves and releases iron ions in the stomach, the ascorbic acid from the vitamine C pill will react with the iron ions from the FeSO4 to form iron bis-ascorbate while still in the stomach. Once in the intestines, the iron bis-ascorbate is also adsorbed into the blood stream, just like iron bis-glycinate.

The benefit of iron bis-glycinate is that it is easier for those with sensitive stomachs than are iron sulfate pills. The benefit of iron sulfate + vitamin C is that they are generally less expensive and any excess vitamin C is also available to the body.

So, if you don't have stomach problems or a weak stomach, there should be no difference between iron bis-glycinate and iron sulfate + vitamin C so long as you check to verify that the dosage is adjusted to provide the same amount of iron.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.

sdcowgirl
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Re: Needing advice on getting off hydrocodone

Post by sdcowgirl »

Wow, lots to think about. Yes, badnights, I was still on Mirapex while on methadone. I don't remember why but I only dropped from 1 1/2 to 1 mg and that's where I'm still at.
I'd emailed Dr. Buchfuhrer, he also wants me off Mirapex and wants me to see an RLS specialist (Stilber) at the Mayo Clinic. But that would also be a long wait.

There is no one here (local Drs) that can/will prescribe anything stronger than hydrocodone and finding a neurologist who understands RLS is next to impossible (unless I head off to the Mayo Clinic). I'm seeing my physician next week and will take along the printouts, don't know how he'll react. He's very against narcotics but then, does not understand RLS. Could there be any truth to the statement that the last neuro I saw at the Mayo Clinic years ago, that being overdosed on a high dosage of Sinemet did permanent damage to my dopamine receptors? Would that make a difference in attempting to 're-set' things? I guess my greatest fear is that I'll go through hell for nothing because that damage was already done. Really depressed. I honest to God don't know if I could stand 5 days of complete body electric shock torture if I couldn't handle 5 hours of it in the past.
You guys are very knowledgeable and I do respect and appreciate your input. At least you understand what this is, that's rare.
I'm going through a lot right now, seeing an orthopedic surgeon about my back and and having an MRI (if I can lie still enough), he did suggest a neurologist. Maybe he can find me one who isn't afraid of opiods. Just a thought.

figflower

Re: Needing advice on getting off hydrocodone

Post by figflower »

Cowgirl, this is what I explained to you, it comes from an article meant for high school kids. I'm a CPA and an attorney and work as an investigator for the federal government but when it comes to science I'm back in highschool. I know a little bit about psychiatry too. Misery wants company. The iron bis-glycinate works for me, and many others, period. Thanks to it, I never suffer more than 5 minutes with RLS. Potassium works as well but not as long and it's a dopamine agonist and I prefer to at least take something that actually feeds my receptors versus teases them into releasing dopamine. Here's the HS article:

Drugs and the Brain

Introducing the Human Brain

The human brain is the most complex organ in the body. This three-pound mass of gray and white matter sits at the center of all human activity—you need it to drive a car, to enjoy a meal, to breathe, to create an artistic masterpiece, and to enjoy everyday activities. In brief, the brain regulates your body’s basic functions; enables you to interpret and respond to everything you experience; and shapes your thoughts, emotions, and behavior.

The brain is made up of many parts that all work together as a team. Different parts of the brain are responsible for coordinating and performing specific functions. Drugs can alter important brain areas that are necessary for life-sustaining functions and can drive the compulsive drug abuse that marks addiction. Brain areas affected by drug abuse include:

Brain diagram showing the limbic system, the brain stem and the prefrontal cortex.
The brain stem, which controls basic functions critical to life, such as heart rate, breathing, and sleeping.
The cerebral cortex, which is divided into areas that control specific functions. Different areas process information from our senses, enabling us to see, feel, hear, and taste. The front part of the cortex, the frontal cortex or forebrain, is the thinking center of the brain; it powers our ability to think, plan, solve problems, and make decisions.
The limbic system, which contains the brain’s reward circuit. It links together a number of brain structures that control and regulate our ability to feel pleasure. Feeling pleasure motivates us to repeat behaviors that are critical to our existence. The limbic system is activated by healthy, life-sustaining activities such as eating and socializing—but it is also activated by drugs of abuse. In addition, the limbic system is responsible for our perception of other emotions, both positive and negative, which explains the mood-altering properties of many drugs.

How do the parts of the brain communicate?

The brain is a communications center consisting of billions of neurons, or nerve cells. Networks of neurons pass messages back and forth among different structures within the brain, the spinal cord, and nerves in the rest of the body (the peripheral nervous system) *********. These nerve networks coordinate and regulate everything we feel, think, and do.
Neuron to Neuron :) :) : )
Each nerve cell in the brain sends and receives messages in the form of electrical and chemical signals. Once a cell receives and processes a message, it sends it on to other neurons.
Neurotransmitters - The Brain's Chemical Messengers
The messages are typically carried between neurons by chemicals called neurotransmitters.
Receptors - The Brain's Chemical Receivers
The neurotransmitter attaches to a specialized site on the receiving neuron called a receptor. A neurotransmitter and its receptor operate like a “key and lock,” an exquisitely specific mechanism that ensures that each receptor will forward the appropriate message only after interacting with the right kind of neurotransmitter.
Transporters - The Brain's Chemical Recyclers
Located on the neuron that releases the neurotransmitter, transporters recycle these neurotransmitters (that is, bring them back into the neuron that released them), thereby shutting off the signal between neurons.

badnights
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Re: Needing advice on getting off hydrocodone

Post by badnights »

cowgirl: it is totally worth the wait to see Dr. Silber. I would move on two fronts at once, going to your family doc again but also getting on the list to see Silber. Whichever one comes through first! But at least with Silber you know you have someone who gets it, and who presumably will not be afraid to prescribe opioids if that's where it's at.

Advice: don't bring all the papers to the doctor. Or, bring them, but have a select one or two with highlights to point him at while you;'re there. Chances are, he won't read any of it after you go. So whatever you point him to, had better be something good. I'd pick three sentences: one about augmentation (I'm assuming it's new to him), one about the new recommended maximum dose of pramipexole (Mirapex) according to Buchfuhrer, and a sentence about withdrawing from dopamine agonists after augmenting on them - how the symptoms are severely exacerbated.

Re Sinemet, doctors like Allen and Buchfuhrer are now considering that dopamine meds might cause some sort of permanent or long-term changes to our dopamine receptors. But no one knows for sure. It's a pretty nebulous thing to bring up to a doctor who needs to learn the basics. But don't worry it's all for nothing, that is not the case at all! You may stay off of dopamine drugs for the rest of your life, or you may introduce them back for intermittent use only, but it's not a big deal, because there are other meds that can help (opioids and anti-convulsants, alone or in combination).

Remember there are a lot of options out there! Talking to Silber will help you to see that. you are just beginning to get help, you're not at the end! And remember too, after you come off the mirapex, your baseline symptoms will be much lower than they are now. You are experiencing augmented symptoms now, I would think (did you check those criteria? they're somewhere at www.willis-ekbom.org)
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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