Needing advice on getting off hydrocodone

[sdcowgirl]

I'm new here, but not. It's just been a really long time. Back in 2006 I started taking hydrocodone to aid in getting off Mirapex (which I'm sure is making my RLS worse.) That same year I was on methadone for 6 weeks but couldn't tolerate it. Only recently, when I was asked to sign an 'Opioid Accountability Agreement' and was reading it when I found a list of side effects. It made me angry because I've never found these particular side effects listed on any computer printout accompanying the prescription, nor has a doctor or pharmacist given me this info. Mainly: decreased appetite, problems with coordination or balance and confusion or other changes in mental state or thinking. I've talked to SO many doctors about these VERY symptoms but no one ever put 2 and 2 together! I've had neurologists tell me I have MS! (and was tested for it numerous times). I need to get off hydrocodone but have tried so many drugs in the past for my severe RLS that never worked. I'll list them: (some are mind boggling that a physician would even put me on them) Benadryl, quinine, amitriptyline, gabapenton, Sinemet, clonazepam, Permax, Mirapex (still using), Requip, Inderol, Baclofen, Ultram, Cymbalta, Lyrica, hydrocodone, oxycodone, methadone, bupropion. 18 in all. So, as you can see, I feel like a lab rat. RLS hit me 20 years ago at the age of 40 after a severely herniated disc. Before that, I took practically NO prescription drugs. I hate them. I've seen 4 neurologists (including the Mayo Clinic) and all they do is put me on the newest drug on the market but seem to have no knowledge of their own on how to treat RLS. I'm very discouraged and depressed. This past summer the hydrocodone 5/325 and Mirapex 1.5mg that I've been on for years seem to have worn out and it's been a tough, sleepless summer. I have RLS 24/7. It rarely stops tormenting me. Sorry this is so lengthy. I desperately need to get off hydrocodone and feel Mirapex has caused a lot of augmentation (but have tried to quit that and it's nearly impossible). Any advice would be greatly appreciated!

[debbluebird]

One thing for sure I would change it to just the opioid eliminating the Tylenol. That's the 325 mg part of the hydrocodone. The doctor can write the script in order to do that. I was wondering how the methadone affected you? When I first started taking it I was very nauseated. I kept taking it because I was out of options. It finally went away after a couple of months. Also it is a low dose. 5 mg tabs. I have no side affects now.
It's tough anyway you look at it. I'm also wondering if you are augmenting again?

[figflower]

Hi Cowgirl. I just gave you a long answer but it didn't post. So here's one of my post's from another section.

Hi Peanut. A while back I did some research on how iron, dopamine, dopamine receptors, the central nervous system (brain, spine) and the peripheral nervous system come into play in terms of RLS. Let's start with what I believe (and researchers too) is going on. What's going on is a genetic predisposition to RLS. I think most, maybe all of us, have low levels of brain (not so much body) iron and that lack of iron causes our dopamine receptors to be small, few and pathetic. The receptors hurl dopamine, a neurotransmitter, down our spines (CNS) to our arms and legs (aka peripheral nervous system) and quiets them. The dopamine bounces its way from neuron to neuron along our spines on its voyage to the peripheral nervous system. I think for most of the people on earth, their dopamine shoots out of their receptors in a stream. For us it's a dribble. And maybe, just maybe, that dribble is enough to quiet our arms and legs. But one bump in the road, such as a spinal injury (anywhere from neck to coccyx) can trigger or worsen RLS. And you're right, even after our backs, or compressed nerves, feel better, they may no longer provide as good a route through which the dopamine must travel. Fear not, because we can always look upstream, and try to shore up our shoddy dopamine receptors and try to get a stream going . Let's face it, the vast majority of people with back and nerve problems will never develop RLS. But those of us genetically pre-disposed to it will. So we gotta get a stream going!!! So we take upstream drugs such as dopamine agonists or pain killers and that's fine but I am looking for other ways to squeeze more dopamine out of those receptors or shore up the receptors...preferably.

I know that the iron bis-glycinate (aka Ferrochel) does not provide you with complete relief, but it does me. But I have to take it during an attack, on an empty stomach. If I take it in the morning it will do nothing for my evening attack of RLS. And if I take the iron with any other substance such as magnesium or calcium or milk it negates the effect all together. And if I take any form of iron other than iron bis-glycinate it will not work. One tablet provides one night of relief, for me. I wish it did the same for you. So from what I understand, iron will actually shore up our receptors. Iron is not a dopamine agonist, I do not believe. I believe that potassium (the right kind, in the right amount) will act as a short lived dopamine agonist. So will quinine and maybe tumeric. But I'm not in the market for a dopamine agonist, I believe even the natural ones can potentially down-regulate our already down-regulated receptors. I want to shore up my shoddy receptors with something totally natural and healthy. I do not particularly like iron, especially since I already have the red blood count of a healthy 18 year old man and the ferritin stores of Hercules. Iron is my emergency med when all else fails. Clearly, MY brain cannot call up that much needed iron from my stores so why bother adding to them, but when that chelated iron is circulating in my bloodstream, unbound, my brain sucks its up and provides relief. But by the dawns early light that iron is stored and I must repeat the process with my next attack. To contradict myself here, for all I know, my healthy iron stores IS helping in some way because I only get an attack (as opposed to those who have it 24/7/365) it seems when I take Tagamet or Benedryl or over-eat at night. OMG, if I so much as look at Melatonin I get not only restless legs but restless body. It's insane what it does to me. I took HRT for a while and that made my legs crazy too. I've heard a lot of people react the same way to the SSRIs and even statins. I think even splenda can trigger an attack for me. When I was younger these substances did not bother my RLS nearly as much but as we age so do our receptors. Everyone's receptors do but somehow it doesn't much matter to the rest of the world. It is only we who are pre-disposed to RLS that can't afford that age-related decrease in receptors.

My plan in improving the RLS and my overall health is to first eradicate my candida overload and to try to consistently under-eat. According to drug addiction websites, under-eating or intermittent fasting will up-regulate our receptors and that's very good for us. Ipso facto, over-eating will down-regulate our receptors, that's bad, very bad. I'm an over-eater, so I have my work cut out for me. I also believe that there might be something to magnesium. I think magnesium is a dopamine antagonist so at first it might not work or even make RLS worse but then in the long run it might up-regulate our receptors. Once again, if dopamine agonists down-regulate our receptors then dopamine antagonists should up-regulate???? So maybe a dopamine antagonist in the morning will mean a better night's sleep? Just a theory as to why magnesium seems to help so many people. Taurine too.

CowGirl, you can look at my other posts on using potassium and quinine which are also dopamine agonists of sorts. And like any good DA, these substance will lose their effectiveness after awhile and have to be increased so best for emergency use only. There are two substances which are supposed to up-regulate receptors, called CDP choline and quinine. I doubt they are a quick fix. I'm not in the market right now for a quick fix since one tablet of the iron-bis-glycinate always quiets my legs. I'm willing to try the under-eating and the two above substances on a long term basis and forever if necessary. You need a quick fix so I would try the iron bis-glycinate (with your doctors permission) at night on an empty stomach away from all food and supplements and medicine. Just swallow with water.

[figflower]

Not quinine I meant Uridine 5 monophosphate is supposed to up-regulate receptors.

[sdcowgirl]

Hi debbluebird,
I actually tried the codeine without the tylenol once but was never able to figure out what dosage to use. The numbers seem to be different when using straight codeine.
I was on a very high mg with straight codeine but was only on 5 mg when on hydrocodone. It absolutely did nothing for my RLS so had to go back to hydrocodone.
Thank you though, for your suggestion. Other thank making me VERY sleepy (which eventually went away) I got along OK with methadone until the second month, I started having panic attacks. Even after only being on it for 6 weeks at a dose under 10 mg, I had a very hard time getting off it. I was told by my pain specialist that I could wean off it in 4 days. No way. I basically went into withdrawal. It was awful, panic attacks, chills and the most horrible RLS all over my body the first day, after that it was panic attacks and worsened mitral valve prolapse (I already had that) and very irregular heart beat. It did however stopped the RLS dead in its tracks. Wish it didn't have so many side effects.
Thanks again!

[debbluebird]

What happens when you take just Tylenol? Just curious. That's what I took when I first got it, and it worked for awhile. It would seem like the 5 mg of codeine would work the same. Well, I guess I don't have any answers. When I stopped the Mirapex, I took the Gabapentin and used a Tens unit. The Gabapentin makes me sleepy at first during the day then gets better.
This disease is so different for each person. I know I have to stay on low doses, or I have side affects.
Maybe some of the moderators will have some answers.

[sdcowgirl]

Hi Figflower, Wow, I've never had anyone really describe what RLS does. Suppose if I print out your explanation and took it to my family practitioner, he'd listen? Probably not. Seem they won't take anything seriously if they find out you learned it on the internet even if it did come from someone who knows more about RLS than they do.
I WILL however talk to him about iron bis-glycinate. Can I get it over the counter or is it prescription? I've had my ferritin levels checked but I understand that doesn't mean much if your brain isn't utilizing it properly. I really, really, really need to get off hydrocodone. It's messing with my life terribly (about as much as RLS) and even though I realize RLS gets worse as you age, it seem that ever since I started Mirapex over 12 years ago, I've had to increase the dose constantly to the point of taking 1 1/2 mg /day which I've only been able to drop to 1 mg with opioids. It's hell to get off of. The first time, I tried cold turkey (never did that again), I had RLS so bad I was literally throwing myself against the wall because the RLS was EVERYWHERE and didn't stop for 5 hours even though after the first 2, I went back to my regular dose.
Has anyone here tried the Relaxis Pad? It's terribly expensive but if it actually worked, I might try it. Can't imagine why a prescription is needed for it? I did try a back vibrating pad (on my legs) and it did nothing but maybe the vibration is different?
Thanks so much for your response. If iron bis-glycinate would work, it would be so great but as hard as both these drugs are to get off of, I'm not sure if it will be enough.

[sdcowgirl]

debbluebird, I've tried that. It did nothing, nor does any other type of painkiller like ibuprofen. Gabapentin used to help but now I take it only because it helps me sleep a little better. Does a Tens Unit help? I was always afraid to try it. Is is anything like a Relaxis Pad?

[debbluebird]

The tens helped, but it wasn't a solution. I've never tried the relaxis pad.

[figflower]

Not to panic. It sounds like your RLS was triggered by a now healed back problem. You never before had symptoms of RLS so it is really only a matter of getting your DA down regulated receptors back to baseline. So yes get that iron either from Amazon or a vitamin shop. Drug stores don't seem to carry it. Remember relief is always there for you so no worries. Be patient, be an explorer. One night skip your 8pm dose of the painkiller and take the iron instead. Pop in your favorite movie and relax. If the RLS goes great. If it goes away partially I would take a second one but check with doctor. If you're not in another world by 10pm like I am then take the painkiller. Next night repeat the iron and if RLS isn't gone by 9pm take a bioavailable form of potassium. I've tried cream of tartar 1/2 to 3/4 teaspoon in water and it provided two hours of relief whereas iron provides all night relief. You can even throw a glass of tonic water in there. Believe it or not finding a short term solution is easy. The hard part is getting your receptors upregulated. That might mean consistently under-eating for quite a while and trying not to be constipated. Magnesium, CDP choline and uridine 5 mono phosphate in the recommended doses are all worth researching and maybe taking day after day in the morning. None of these seem to be a quick fix but they may very well be your journey back to an RLSFree life. You also have to look at every other substance you are taking from sugar substitutes to melatonin to statins to HRT, beta blockers, calcium channel blockers, metformin you name it they're all guilty of provoking symptoms until proved otherwise.

So you gotta find a substance that will allow u to sleep while you up-regulate your receptors. Kind of what we're all doing. Whatever it takes to get some dopamine released at night. Stand on one foot listen to binaural beats, sleep with feet high as possible. Try eating turmeric with dinner. Try eating chili peppers. Google either of these spices and you will see that they cause a quick pop of dopamine release the way walking does. When we walk dopamine is released in a a nanosecond to balance us and coordinate movement. Unlike Parkinson's patients we have plenty of dopamine kicking around up there we just need to persuade our receptors to send some down our spinal column.

[sdcowgirl]

Thank you, you've given me options I never thought of/heard of. I've been feeling pretty desperate. I'm still not sure if this will get me off hydrocodone or Mirapex (and I very much need to be) but I'll keep plugging away. The back problem does still seem to be an issue. I saw an orthopedic Dr. this past week due to a problem I'm having with the toes on my left foot curling/grabbing and had an electromyogram and nerve conduction study on that leg (which is actually where the RLS is the worst and I have permanent nerve damage to my sciatic nerve). The doctor tells me it's still being caused by the L-1 injury from 20 years ago. It's gotten so bad, I limp because my toes curl so much. Really hard to walk if your toes aren't working properly! So between that and the lack of coordination and balance from the hydrocodone, I'm turning into a recluse. I hate to leave home~ something has to change. But, thank you again for your input.

[figflower]

You're one tough chick cowgirl. This is not the forum but I would love to hear what options the orthopedic surgeon is offering you. Back problems are of epidemic proportions...in my opinion. I don't know that I know anyone in their 50s without some type of back or neck (or knee) problem including myself. But it sounds like you're at a point where you need to address the herniated disc straight on. Sending healing thoughts your way.

[ViewsAskew]

Just my two cents...

You have likely augmented and remain augmented. You likely will not have 24/7 symptoms (but you could) when you stop pramipexole. If it were me, I'd reduce that to 1 mg, then stop it cold turkey (while working with my doctor). You will likely have 5-15 days of hell. You can stop the opioid at the same time (and any other RLS/WED drugs) or wait until the worst of the augmentation is over. It's only when you've been drug free for awhile that you'll know what your true level of symptoms are.

Then you can decide if you want to try other pharma routes or try non-pharma routes.

[sdcowgirl]

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.

[sdcowgirl]

Thanks Figflower, when I've had my MRI and meet with the Orthopedic Doc, I'll let you know (in the proper board) what's happening.