OxyContin side effects?

[Valthinking]

Hi, I'm trying to navigate my way through almost two years of refractory RLS. I'm not sure if I need to manage my expectations or seek more help. After a lengthy weening (from 12 years of Mirapex because of augmentation) and trying gabapentin, Horizant, Pregabalin, Clonazepam, Tramadol and probably more, I'm taking 10 mg. OxyContin, 5 mg oxycodone and 2.5 Tylenol with Codeine pills. I take one T3 at night so I can sit and eat dinner, and sometimes can sit for longer at night—of course, sometimes not! I take the 10 mg. OxyContin at 9:30 with a little Clonazepam (.017 of a .5 pill because I'm titrating down and trying to get rid of it altogether). Then at 10:00 pm I take 1/2 of a T3 and 5 mg of oxycodone. I can get to sleep in about an hour and sleep until anywhere from 3:00 am to 4:30 am. (I do get up 2-3 times to use the bathroom.) Then I take a T3 and 1/4 of a 5 mg. oxycodone pill (so that would be 1.25 mg). I can sleep until 8:00 or later.

This should be bliss! But the days are SOOOOO miserable. I used to be a pretty happy person with plenty to do. I've become next door to a recluse (for me!). There were so many things I had to stop doing because of RLS and no sleep. Too dizzy to drive and scared I'd hurt someone else. I had to leave get-togethers with friends because my legs were just twitching and bothering me so much I couldn't sit and converse. Even after exercise! Even during the day! On top of it, my small business slowed to a standstill, mostly because I just couldn't think straight.

Also a grandchild who lived with us on the weekends flew the coop (I miss having him around. That's just empty nest syndrome!) I often help with his little brother, who has a rare genetic disorder with seizures and a complete inability to move. It's tough going. There are just a lot of stressors and not much to lift me up right now. So I'm being treated for depression and not having much success. 15 mg. Mirtazepine and 25 mg. Lamotrigine. The Lamotrigine has helped the most—I don't think about suicide all the time anymore. Don't know if the Mirtazepine is doing anything. I tried Wellbutrin, Divalproex and Trazodone and all of them made me feel like my skin was burning up on the inside, and so tense I was wringing my hands constantly.

I'm sleeping better, not great, but a whole lot better than before. But during the day I'm dizzy, sick to my stomach and feel extraordinarily weak. In the afternoon I have the same feeling of burning up under my skin, and restless hands, until I take the evening codeine (T3). Does anyone know if these are the side effect of opioids? The psychiatrist says it can't be the Lamotrigine.

I'm wondering if this is just the best life gets? Do I need to just accept the status quo or —— honestly, I don't know what! My doctors seem to just do what I ask, if I ask the right way, but none of them know a thing about refractory RLS. Any advice would be much appreciated!

[Rustsmith]

I believe that it was Dr Earley that said during one of the RLS patient conferences that all of the opioids are equally effective when it comes to treating RLS but that the side effects are different and that is why there are so many different opioid products on the market. If Oxy is causing you daytime problems, ask to try something else. The first choice of most of the RLS experts is methadone. It has side effects too, but they are different. Methadone also has the "benefit" of being a 1/day pill. So if it causes insomnia, take it at lunchtime. If it causes drowsiness, take it at bedtime. For me, it can cause reduced testosterone, but that can be easily treated.

Another option is buprenorphine, another 1/day med. Buprenorphine (and tramadol) have anti-depressant properties, but the FDA will not approve them for this use since they don't what psychiatrists prescribing opioids to treat depression. But if you can kill two birds with one stone ...

As for the T3, keep in mind that it is mainly Tylenol and chronic use of Tylenol can cause liver damage. If you MUST continue to take T3, make sure that your doctor is regularly checking your liver function.

Finally, are you familiar with these two publications? They were written to educate doctors about the proper treatment of RLS.
For Opioids - https://www.mayoclinicproceedings.org/a ... X/fulltext
For the latest treatment algorithm: https://www.mayoclinicproceedings.org/a ... 0/fulltext

[Polar Bear]

Do you know what your blood ferritin serum level is. Normal is accepted as being over 20 but an rls sufferer needs a level of around 100. This isn't checked in a standard blood panel so you need to request it. It's important you know this so that if necessary you can work on increasing your iron.
If your ferritin is low you could discuss the possibility of iron transfusions.
Is your doctor your PCP doctor, have you ever seen an RLS specialist.

[Valthinking]

Hi Steve,
What Dr. Early said about different opioids having different side effects is interesting. I've already been told by Dr. Silber at Mayo that Methadone is reserved for people who don't respond well to oxycodone, and I'm pretty sure morphine, since he noted that I could try that. I have to take Dr. Silber's recommendation to my neurologist for an actual prescription. I had to twist a LOT of arms to get what I have. It works well for sleep, just not for daytime! So right now my choices are Oxycodone or Morphine. I've read lots of your posts and one thing that scares me about methadone is depression. I've got my hands full dealing with that already. I'm still at an early stage regarding these side effects—I just don't know if the Oxycodone is causing the daytime problems, or if it's one of the antidepressants (15 mg Mirtazepine and 25 mg Lamotrigine). I just want to be sure before I take the leap of lobbying for another opiate, because we all know how difficult it is to talk a doctor into another course of action. (I handed my internist the Mayo Clinic algorithm and she tossed it aside. "Anyone can write a paper," she said, and then told me she would never write me a prescription for an opiate. I don't blame her, in a way. It doesn't help me, but I understand.) Tramadol I've tried, and had the same daytime dizziness and exhaustion, but LOL I was really happy. I woke up at night gasping for air on it, though, and I have no breathing issue normally. I note your advice on T3 and am trying to take less of it. Last night I upped the oxycodone from 1/4 pill to 1/2 pill, and lowered the T3 burden to 2 pills instead of 2.5. Baby steps. I read both of the publications, too. Thank you Steve!! I'll research buprenorphine; I don't know a thing about it. I'm also scared or going through opiate withdrawal to go from one to another. UGH! I wish I lived near one of the quality care centers. I'm in an RLS/WED desert, here north of Chicago!

[Valthinking]

Hi Betty,
My serum ferritin is in the normal range; 45 I think. I was taking iron orally for a long time, but had to stop. My stomach just rebelled and I couldn't take any supplements. I could barely eat, hence the Mirtazepine. (I guess they developed it for seniors who would forget to eat!) Insurance won't pay for iron infusions unless you're really low, I think? I've heard the infusions are quite expensive out of pocket, and you have to be sure to get the right type. It might be worth if if I could get a doctor to opt for it! It would be awful to pay a lot and have it not work for me. I wish they had a better way of knowing!

I haven't actually seen an RLS specialist but was able to book an appointment online with Dr. Silber of the Mayo Clinic, which is how I got the Oxycodone I use now. The Mayo Clinic is linked with the North Shore System. My neurologist is in the North Shore System, and when they linked they made a big song and dance about working together, so even though my neurologist was not thrilled, he prescribed for me. But as I told Steve, I can't tell if I'm experiencing side effects from the oxycodone or the anti-depressants. I see a pain specialist in a couple of weeks. Maybe he would know?
Thanks so much for replying!!