hydrocodone+Carbo-levo

[pexj]

As I said in the other post, I take the hydrocodone every night, two tablets. If it is bad, like tonight, I took one more. Don't have any clonazepam but maybe I will talk to my doctor about it. I appreciate everyone's comments, I don't feel so alone with this disease.

[pexj]

Well with the ongoing treatment of RLS, my local providers is willing to help any way he can but admits this disease is way out of his league. So far I have not been able to get into a neurologist but keep trying. It is doubtful there is one in Oregon that will see me. In the evolution of medications, I have dropped the Carbo/Levo completely. I take Gabapentin 4 times daily for a total of 1600mg daily. In the evening I take two tablets of hydrocodone as well. When RLS kicks in in the night I have Clonazepam as a rescue drug, one tablet. The issue now is that I walk around in a stuporr but the RLS seems to have subsided in recent days. I have got to drop some of these drugs but don't know where to start. I find the people on this site to be my best resource and realize you are not licensed to treat me. But if someone said " I had a similar circumstance and this is what I would do..........." At least I would have some idea where to start on cutting back on the drugs. To give you some idea, I fell asleep at the dinner table the other night still holding a piece of pizza in one hand.

[Rustsmith]

You are currently taking an enormous amount of gabapentin, which is one of the two drugs that can effectively act as a sedative for those of us with RLS. The FDA max recommended dose of gabapentin is 3600mg/day and you are taking 4800mg. As you said, I cannot tell you what to do, but that seems like a good place to start, especially since the hydro is probably doing the heavy lifting when it comes to controlling your RLS need to move symptoms.

[pexj]

Hmmmm.....I take one 300mg capsule at 8am, noon 4 pm and two 300mg capsules at 8pm. that is 1500mg daily. I have been reading about Horizant, if I switched over, how does one transition?

[Rustsmith]

Horizant is a pro-drug of gabapentin. That simply means that it includes a chemical modification but is essentially the same drug. A problem for some people is that gabapentin is only adsorbed by a short length of the small intestine. If your entire dose doesn't get adsorbed as it passes that section, the extra portion is lost. Horizant's modification allows it to be adsorbed by the entire length of the small intestine. Once Horizant is in the blood stream, the extra chemistry is lost and it becomes exactly the same as gabapentin.

What this means is that if you take 1600 mg of gabapentin, you might get 1500mg into your blood today and 1000 tomorrow. If you take an equivalent dose of Horizant, you get the same as the full 1600mg every day. Also, that extra portion of gabapentin that was lost is now adsorbed, but a little bit later so Horizant also has some extended release properties since it continues working for a bit longer.

So, you can simply stop taking gabapentin one day and start taking Horizant because they are the same drug once they are in your bloodstream. The major difference is price. Gabapentin is cheap because it has been generic for many years. Horizant is very expensive because it is still covered by the manufacturer's patents and will be until 2029, so there is no competition.

[pexj]

Thank you for your information, you are a valuable resource.

[Bridgercan]

Hey pexj—I’m glad you found this forum and are finding it helpful. I was in a desolate wilderness of worsening RLS symptoms, living in a rural area, and not knowing anyone with chronic RLS, until I came across the forum in the midst of the agony of full-blown augmentation. That was eight years ago, and it has been a long, challenging journey of trial and error with different meds, a number of so-called specialists—some bordering on quacks—and finally, finding caring, knowledgeable RLS specialists. I really don’t know if I could’ve managed at all without the forum’s and foundation’s knowledge base and the people, especially the moderators, behind both. It is the empathy, compassion, and warmth of the forum community that has helped me get through all the difficult days and interminable nights.

After nearly thirty years of RLS, I can say patience AND persistence have served me best: patience for the trial and error of meds and learning how and when to dose, patience with my spouse who wants to understand but some days doesn’t seem able to, patience in waiting to get in to see a better (hopefully more knowledgeable and involved) doctor; persistence in educating and advocating for yourself, persistence in dealing with gatekeepers to the doctor, persistence in battling insurers, and persistence in fending off despair. For me, that has often been the hardest battle—to ward off despair and see my glass as always half full!

In reading your posts, a few things come to mind that’ve helped a little or a lot over the years—again with the caveat these are only my experiences I’m sharing. You seemed to be on your way to reducing the number of meds you’re on—always a good thing. I was prescribed gabapentin years ago as the primary drug for my RLS. It did very little, so I was switched to Horizant ER which was noticeably more efficacious. Insurers over the years fought covering it, but my doctors and I always won in the end (persistence). However it had to be supplemented with an opioid. These days my symptoms thankfully are managed well enough on buprex with an occasional as-needed Oxycodone for long travel or breakthrough symptoms. I have to take 300-400 mg of gabapentin each night to keep me asleep. It took a long time to get to this place.

Other things that’ve helped me over the years: CDB oil has helped me with anxiety about symptoms or lack of sleep, kratom (partial opioid agonist to be used with great caution like any opiate and what retailer you buy it from!) for taking the edge off augmentation, THC gummies of sleep-inducing variety (I couldn’t take these until I retired last year). My number one source for immediate relief is a warm bath, especially with magnesium chloride bath salts, which I find much more effective than epsom salts (magnesium sulfate). A soak with these will give me an hour or more of relief, often enough time to get back to sleep. Also when I was still working, I had to wear nicer business casual, so I began ironing my shirts and pants on sleepless nights to pass the time and get rid of symptoms for a while. My spouse was shocked to find his clothes ironed too. Lastly, I’ve learned the hard way to avoid triggers like alcohol, sugar, salt, caffeine, dehydration, too much/too little exercise, and stress.

May you continue to make progress on getting in to a knowledgeable RLS specialist, finding a treatment plan that can manage your symptoms well, and managing to get more sleep! What we go through with this damn syndrome often feels impossible to express, but here you can vent, find a sympathetic ear, and hopefully, like I did, get pointed toward a better drug, better relief, and/or a better doctor!

[pexj]

Thank you so much for your long and thoughtful response Bridgercan. I played golf today, a pick up game with people I did not know. One was a Phyician, and we talked about RLS and my inability to get in to see a neurologist. He looked at me and said "the reason you can't get in to see one is that there is nothing they can do for you." That was like a hit over the head, not to mention how it messed with my golf game.
We had a breakthrough recently as my wife took charge of my medications. It seems I was taking meds as the symptoms were taking place and worse symptoms lead to more drugs. I lost control of my life. She got me back on a daily schedule and I have not had any problems for three days. I am now convinced this site is my neurologist. I have a very understanding GP who will do most anything I ask when it comes to treatment for this disease. He understands the severity of the disease. He and I in association with this site is what will have to keep me going in the years to come. I wonder if the moderators on here any idea on how they have positively impacted the lives of so many people. My hat is off to them and to you for sharing.

[Polar Bear]

pexj - It can be difficult to find a neurologist because any that are any good are probably in heavy demand. Other neurologists may not indeed know how best to treat RLS (even if they say they do). However, it is not always true that 'the reason you can't get in to see one is that there is nothing they can do for you'. That particular neurologist may not be able to help you through lack of knowledge.
But there is always something else to be done, something else to try, often a cocktail of medications. As a sufferer of 40 years It took me many, many years to get to where I am now. Finding this site was what made the difference to me. I had to learn and to guide my GP who was willing to learn and be guided.
As you have found, the timing of taking your medications is important. They always work best taken in advance of symptoms. Once the symptoms arrive the medication has an uphill struggle.

[Lissa496]

pexj - You might want to look for a movement disorders neurologist as many of these doctors treat for RLS.

I used to see a regular neurologist but she wanted to stop prescribing my tramadol, which I was augmenting on. She recommended I see a Pain management doctor, I do not suggest this, as they will prescribe opioids. I had such a negative experience with PMD as they did not know what RLS was and they wanted to treat it as regular pain.

I found two doctors who agreed to treat me through the RLS.Org site on the doctor's page. One was out of state, so I chose the instate doctor as she could prescribe opioids. As I was augmenting on tramadol, my new movement disorders neurologist worked with me for the first year to find a treatment that would help mitigate 90% of my RLS. I now see her twice a year and if I have any issues. She will visit via zoom for most of my visits, but I do have to travel to her once a year to keep my opioids. I travel 2.5 hours to see her and it is well worth the 5 hours total travel time for a 30-minute in-person visit.

Good luck! Lissa

[pexj]

Well, it has been a couple of weeks now on Gabapentin and it is working as well as I will probably ever have for relief. Now I take one at 4pm, two at 8pm and two hydrocodone at 8pm as well. I have Clonazepam for emergencies and I have used one tablet about once a week. I hate to use it as I am tired all the following day if I do. Down to hot tub couple times in the evening. At the moment, I feel like I am in some form of remission.
I Purchased an electric blanket for the bed and an electric throw over blanket for the couch. Both help because they do get hot enough. I can wrap the throw around both legs, crank it to high and there is some relief there.
My wife and I have been looking at the side effects of Mirapex over the years and what it did to my personality. If only I could have recognized it, but I could not and my wife was unaware of the side effects. At one point I was prescribed 2.25mg per day. I can recall days when I did not like anyone. Anger can come on quick with the Gabapentin too and both of us are now working hard to recognize the symptoms. I am lucky to still be married and have someone who has hung in there. In reflection, we both can see how marriage problems developed at about the same time I started on the Mirapex. I could not see the change, but she could. Living with some trepidation but getting by.

[ViewsAskew]

So glad you are finding a way, now, without it.

[pexj]

Well it has been a month now and I think I have a plan that is working. I take meds three times a day. In the morning it is Turmeric and magnesium. Not sure if either of these meds matter. At 4pm it is two Gabapentin, one magnesium, one iron, three D3. At 8pm it is two hydrocodone, two gabapentin, one Turmeric. Usually a dip in the hot tub in the evening helps. If problems persist, I take Clonazepam(1mg) as a rescue drug. I know, consult with your physician, except I don't have one other than a GP that is more than willing to prescribe anything I ask. For example, he prescribed the Clonazepam 1.5 tablets three times a day, then said do what works for you. I doubt I could stand upright with that much benzo. This site is my best and only resource.
Constipation is a problem but getting by. Have not had a level IV or V night in a month. I often wonder if I should switch the Clonazepam to each night and use the hydrocodone as the rescue. Rustsmith? Anyone's experience here? Currently if I need to use the Clonazepam on top of that much Hydrocodone, I am useless the next day, can't stay awake and lay around the whole day. Not surprising with that much opiates and benzos.

There is one more important aspect to this change in meds. Since I have dropped Mirapex, my wife tells me it has changed my personality for the positive. I don't get angry and am more caring and sensitive about the people around me. My wife and I have started over in our relationship, it is good. As we look back, what a travesty what that Mirapex did to my life. I am more like how I was when we were young.

[Rustsmith]

You will be better off with the hydrocodone as your every night drug with clonzepam as your rescue. Any of the benzos will be extremely difficult to stop of you take them every day for an extended period of time. The opioids, such as your hydro, also require a taper to stop but it is not as long nor as difficult. I have had to abruptly stop an opioid twice. Withdrawal is tough but is over in a day or so. By comparison, benzos can take months.

Also, clonazepam hasn't been used as the primary treatment for RLS for several decades. Yes, it helps, but it isn't as effective as the opioids, gabapentinoids or even the DAs.

[pexj]

Thank you, will continue as planned.