Restless Legs Syndrome (RLS) Discussion Board

akita007 wrote: both of those drugs..causes severe gastrointestinal pain like I am on fire inside. Really nasty reaction. I am side effect queen. If there is a side effect to a drug I will get it. .

I apparently am having sympathy pains. Second day of methadone. Took 1.25mg liquid methadone Tuesday and 2mg last night (which is the original dose my doc wanted me to start at). This afternoon I started having lower left painful abdomen spasms which has now moved into full severe abdomen cramping and back. I cannot be constipated yet as had BM's last 2 days. Guess this is going to be another failed RLS med for me too. Like you, hydrocodone gives me some short term relief with no side effects just doesn't last long enough and makes me a little sleepy, so don't know I could take during the day.

This may or may not help....

I have found that I must:
1. drink a LOT of water
2. use a stool softener (2 at lunch, 2 at bedtime)
3.eat a LOT of fiber or else I, too, have extreme GI pain from opioids.

For me, the pain is worst close to the time of a bowel movement - in the hour or two prior. Thankfully I figured out that this helps.

Also, for what it's worth, many of us have tried drugs that weren't helpful to us or that caused other issues. In the vast majority of cases, there is something else to try. I was SO happy methadone worked - the other opioids have not (too short acting or side effects that were intolerable), the DAs all caused augmentation, none of the alpha two delta ligands (gabapentin, etc.) have helped, and the benzos do nothing. There are only two opioids have I have tried....I really hope that methadone continues to work for me.

Is it normal to experience metallic, salty acidic yucky taste from methadone? Does short acting opiates, like hydrocodone, have increased risk for tolerance required more? Itching is creeping up now too, day 5th night. I'm wondering if my RLS is not severe enough for opiates. I know the methadone definitely helps the RLS with very good coverage on such a low dose, yet, the side effects for me are to manage. So sensitive to med's and apparently have low to no discomfort/pain tolerance... crybaby (heightened due to depression, anxiety and insomnia) cannot stand another side effect. Metallic taste and increase dry mouth makes BMS (burning mouth syndrome fair up) not to mention making the chronic nausea worse and now the itching too. And apparently the methadone is causing "alerting" in top of insomnia, waking up every 2 hours but still restful just not sleeping. If I lower dose will side effects lessen or subside?

I find that I MUST take the methadone earlier than I'd expect because of the alerting effect. But, once I get to sleep, I rarely awaken.

I have never had a metallic taste. I am unaware if that is normal. Itching is common - it often goes away. Similar with nausea It did for me, at any rate, and the first week was terrible.

Lower doses do indeed decrease side effects most often. Some people are very sensitive. I find that I can only take methadone and tramadol - all the other opioids have side effects that are very difficult for me. Same for me with the alpha 2 delta ligands - such as neurontin. Between not working well and side effects, they are completely out. So are benzos. My WED is severe enough that I'd be in a tough spot if I had to decide between the side effects and the WED. Either way, I'd be incapable of working or having a life. Yet, sometimes that is the choice. And, it's never a choice we want to make.

I know how very hard it is to "tough it out" when first trying drugs. I can say that for myself and many others, everything often does get better after 1 to 3 weeks. Sometimes we just can't keep trying. My guess is that in many cases, if we can it is often a good thing. That doesn't mean it is easy, though!

To my knowledge, tolerance is not a big deal with any opioids and WED. But, they really haven't studied it a lot - there is no money to be made. They have done retrospective studies where they looked at patient records - the results have been that we have low incidence of tolerance. That said, some of us do have issues. I do. So, it's another thing to deal with. But, for some of us, there just are not other options. If you have them, it sounds like you might want to try them. But, in my experience, most of us get to opioids because we are low on options.

How long does oxycodone last versus methadone? I know methadone has a longer half life. Does anyone take hydrocodone and how long does it keep the RLS under control? Methadone is giving me a overall good treatment of the RLS most of the day. Some breakthrough (mild) around 1:30 then again at later on but very mild. It's overall been very beneficial for RLS but I'm not sure about the side effects of increasing nausea (I've already had for some unexplained reason since August even though I'm on 4 - 8 mg of Zofran daily). If I were to convince my physician to switch me to hydrocodone does it have a faster tolerance than methadone or are side effets worse? Anyone taking hydrocodone? I've never taken 2 days in a row and not more than 5mg at a time and it gave me relief through the night and up until 4 - 5 next day.

Hydrocodone and oxycodone have much shorter durations of action than methadone. Hydrocodone also is less potent, and might not be strong enough to cover your symptoms. HydroMORPHONE might be the one you're thinking of; it's potent like oxycodone, but also has a short halflife.

There are slow-release versions of both oxycodone and hydroMORPHONE, called oxycontin and hydromorph contin. Both of these are supposed to last about 12 hours. You might have more luck, nausea-wise, with one of these. Hydromorph contin seems to be better regarded than oxycontin.

I take hydromorph contin. In the past, when I needed 15 or more mg daily, I also needed a small amount in the morning to prevent withdrawal every afternoon. But ever since I have been able to reduce to 9 or 12 mg, due to an improvement in symptoms, that's low enough that I don't get afternoon withdrawals. I take 6 mg at 5:30 and 3 or 6 at 9:00.

I'm taking one dose of methadone/day around 10 p.m. So far covering appx. 85% of symptoms. However, I cannot go to sleep for almost 1 - 1.5 hours. I've moved it up to 9p.m. and still cannot get to sleep. I'm also on a benzo, as well as, two med's for depression and anxiety and still cannot get to sleep for more than 4 cumulative hours per night. I am convinced now that depression is under better control, it is the methadone that is alerting. If I keep moving the methadone dose up won't my RLS flair ups be earlier due to half life? Anyone else having this problem with pain med's and have any suggestions?

Many of us have that problem. In my estimation, that is the biggest problem with them. Some people think it's the opioids themselves, other ressearch seems to point at it being part of the WED itself.

I find that I need to take them earlier than I''d think. I do not know how much you are taking to offer a suggestions as to how you might split your dose. I also have afternoon and evening symptoms I need to cover, so I take my first dose - 1/5th my total dose - about 4 hours after I get up. I take the majority - 3/5ths - of it about 4-5 hours before I go to bed, then a small amount - 1/5th right before I go to sleep.

One thing that may help is to try gabapentin - I only need about 100 mg to knock me out. This aligns with the Johns Hopkins' research that shows our brains have an issue with glutamate. We may have too much and it's excitatory. When our symptoms are under control, it makes is wide awake when we should be sleeping. When we have symptoms, we blame it on the sensations or need to move. But, it may just be part of the disease.

pj - I don't take the same medications as yourself, but your sleep pattern very much reflects my own.

Views' comment about Gabapentin 100mg helping her to sleep interests me but I have always avoided it because of some of the negative side effects.
However, 100mg is a low dose.

Is Gabapentin same as Neurontin or extended release Horizant (same class)? I have to stay away from Horizant now due to exacerbating depression. I will ask my both my doc's (Psych & Sleep RLS doc).

pjmccoy1 wrote:Is Gabapentin same as Neurontin or extended release Horizant (same class)? I have to stay away from Horizant now due to exacerbating depression. I will ask my both my doc's (Psych & Sleep RLS doc).

Yep. And, they definitely can worsen depression. Drat.

View:
Didn't you have some trouble with Horizant and depression in the past? I may be confusing you with another member. But if so, then perhaps a lower dose might be tolerable? Because of my sensitivity I'm only at 1.5mg because 2 mg had me in fetal position with horrific bloating and abdominal cramping 2 days after taking it. So RLS doc said drop dose to 1.5 and that's where I'm staying at now. It's liquid form so I could easily lower and divide up dose if I can figure out a way to carry liquid in my purse to work. I think I tried generic Gabapentin back in 2012 and was very nauseous. The other reason my RLS is probably controlled some during the day is I'm taking a anti-seizure med (Lamictal) for unipolar depression. I think it does seem to help some. Maybe my Psych will consider a retrial of Gaba again but I know my RLS doc won't. She is still very cautious about my depression and will never put me back on Horizant again.

It was Beth who had depression difficulties - severe ones. I tried Horizant and felt slightly depressed, but that was a full dose. Taking a small amount for sleep hasn't affected me.

That's good to know. I will ask Psych about considering Gaba even maybel lower dose than 100 if available. Thank you.

If your Psych agrees, be sure to watch yourself and pull off it as soon as you realize it's affecting your mood, if it does. Hopefully it won't.

I still don't have a good solution to the opioid- induced insomnia; like views, I just end up going to bed late. It sucks when you're trying to fit in with the world.

What about the Evil Levo-carbidopa? I used continuous-release LC for a while, and it did help me sleep, but eventually caused augmentation. Now I use regular LC from time to time, avoiding frequent use but it might be an option for you to get a good night's sleep now and then at least. (if the low-dose gaba doesn't work).

And what about Lyrica (pregabalin)? It's more different from Horizant than gabapentin is, so its side effects are more likely to be different.