Medication causing Apathy?

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Rustsmith
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Medication causing Apathy?

Postby Rustsmith » Fri Sep 07, 2018 2:02 am

For the last few months (I really don't know how many, but it has been a while), my mood has varied between depression and apathy. By apathy, I mean that even when "enjoying" the situation like a day on the lake with friends, I do not feel much joy. It is as if my world varies between shades of gray and then the darker days when depression hits. I experienced this a number of years ago as a side effect of taking topiramate for migraines. My doctor agreed to cut the dose and the problem resolved itself.

I am now experiencing something similar and suspect that it is the methadone (5mg) that I am taking. Unfortunately, cutting the dose isn't really feasible this time unless I want to go into untreated RLS. I intend to discuss this with my doctor as soon as I can (which may be a while). I will be calling the office for an appointment tomorrow morning.

So, my question to others is - have you experienced anything like this with long term treatment with an opioid? If so, what did you do?
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

QyX
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Re: Medication causing Apathy?

Postby QyX » Fri Sep 07, 2018 8:34 am

Methadone can be a nasty drug. I've studied how Methadone works in patients with opioid addiction and lots of those patients seem to suffer from similar problems. However they take much higher doses, some up to 200 mg / Methadone per day. 5 mg Methadone is a very low dose.

The symptoms you are describing is one of the reason why I am afraid to try Methadone.

The classic opioids like Morphine, Oxycodone, Hydrocodone and Hydromorphone normally don't have this side effect.

Why can't you take one of those classic opioids or have you tried them in the past and they did not work?

I believe that especially Morphine can be useful for RLS because it has some hypnotics properties of its own. Unfortunately you will develop a tolerance against those hypnotic properties but Morphine worked absolutely amazing for me for a few months.

But I am also aware that some people get stimulated by those classic opioids. For me Morphine was the least activating opioid, then Hydromorphone and Oxycodone was the most stimulating. It was really bad. Almost worked like a classic stimulant. Hydrocodone is not available in Germany so I never took it.

If your symptoms are related to Methadone, which seems highly likely in my opinion, you could check if there is Levo-Methadon available. Methadon is a 50:50 mixture of Levo- and Dextro-Methadon with only the Levo-Methadon having analgesic, opioid like properties. By taking only the levo- version of Methadon you might have less side effects.

In Germany Levomethadon is available under the brand name Polamidon.

Having said that ... even Levomethadon can still have all the negative side effects Methadon has. Some say it has less side effects ... some say the regular Methadon works better. But that is feedback from patients who get treated for opioid addiction and take at least doses equal to 40 mg Methadone and more.

You could try adding a antidepressent but from my observation this rarely works since Methadone is a very potent and dominant drug once it is in the system.


It is a bit hard for me to understand why Methadone became so popular for RLS treatment in the U.S.

In Germany Methadone has a horrible reputation and only in rare cases it is used to treat cancer pain when the regular opioids fail.

Also it is surprising how many patients never have tried Morphine. It is way cheaper then Oxycodone and because it is more sedative, it normally helps you falling asleep much better than the often stimulating Oxycodone.

Having said that: I take a combination of Hydromorphone, Morhpine and Oxycodone because I am tolerant to opioids if I only take one drug alone. Only the combination works for me. So if one single drug is not working for you, you can try a combination of classic opioids. And since your dose is so low, you can even consider taking Dihydrocodeine which could be potent enough in your case.

I hope this was helpful

(A personal note: Methadone can be a nasty drug with complicated cardiovascular side effects but it also has some unique effects when it comes to pain treatment. But it is more of a dirty opioid in my opinion. In Germany and Austria lots of patients treated for opioid addiction are getting switched from Methadone to Buprenorphine and Morphine because of the side effects you are experiencing)

Rustsmith
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Re: Medication causing Apathy?

Postby Rustsmith » Fri Sep 07, 2018 4:11 pm

Qyx, thank you and yes that information helps confirm my suspicions. I am waiting on a call back from my doctor to see where things go from here.

As for the other opioids, I just assumed that they would all have a similar potential for this side effect. But based on your comments, I dug out a prescription given to me when I had hand surgery last year so that I can offer that as a temporary option to my doctor.

The following is my understanding of the situation and my not be totally accurate -- It is interesting to me that methadone has such a bad reputation in Germany, since that it where it was developed. As for the US, I suspect that there are several reasons for it's use with RLS. 1) due to it's long half life, it only has to be taken once a day. Even then, I often forget about it until I start to have either RLS or withdrawal issues. 2) I think that remember one of the doctors at Johns Hopkins stating that it interacted directly just a bit with the dopamine receptors, a property that is not shared by the other opioids. And 3) I get the perception that it is viewed as being less likely to result in abuse. As for buprenorphine, for some reason federal regulations on it's use have severely limited access. Doctors had to undergo special training and they were then limited to the number of prescriptions that they could write each month. That has very recently started to change, so we may see it used more in the future.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

QyX
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Re: Medication causing Apathy?

Postby QyX » Sat Sep 08, 2018 8:01 am

Methadon is chemically way different then all the opioids based on Morphine. Just check Wikipedia and see how similar Morphine, Codeine, Dihydrocodeine, Hydrocodone, Diacethylmorphine (also known as Heroine), Oxycodone look like .. and then look at Methadone.

For Hydromorphone we have a 24h XR version in Germany, we also had that for Morphine but that formula was not very popular so they only use it to treat opioid addiction.

Methadone has such a bad reputation in Germany because of those side effects like apathy, depression, cardiovascular problems, impotence etc. reported by patients who are treated for opioid addiction. Unfortunately we have the situation in Germany where many opioid dependent patients are stuck on high doses of Methadone and suffer from the side effects you described. Because some doctors believe Methadone will less likely result in the additional consume of Diacethlymorphine (also known as Heroine), they keep their patients on Methadone and don't offer them the more "clean" alternative Morphine. Also Morphine was only recently introduced as a treatment option for opioid addicts. Basically Methadone is for the bad patients who can't behave ... so for many it feels like a penalty to take Methadone and Morphine is for those who behave and don't consume additional substances like Benzodiazepines or alcohol. But making this distinction is stupid. Methadone is just way cheaper and doctors also fear problems with the insurance companies when they put to many on Morphine.

Also Methadone is just as abusable as Morphine or Oxycodone. There is not really a difference, just that different people prefer different substances.

Of course when in the U.S. the numbers of doctors who can prescribe Methadone is very limited compared to those who can prescribe all the other opioids, then Methadone will less likely hit the black market and it may have a better image than other opioids.

In your case I would try either Hydrocodone, Hydromorphone or Morphine. I know that Oxycodone is very popular in the U.S. but it is also one of the most stimulating opioids. But normally when your doctor is willing to prescribe Methadone, I see no reason why he wouldn't give you another opioid. Just be aware that development of tolerance may happen faster on these Morhpine-like opioids.

ViewsAskew
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Re: Medication causing Apathy?

Postby ViewsAskew » Sun Sep 09, 2018 9:51 pm

Have you all watched the Foundation's webinar on why methadone works better for RLS than other opioids? But, just because it does, doesn't mean that it doesn't come with issues for some of us. And, if it does, it also doesn't mean another opioid will always work (though thankfully it often does). It also depends on the dose needed. I need more methadone than many on this board, so switching to some others isn't effective at all.

A certain percentage of us end up in a dance trying to find something that causes the least number of issues and still lets us function.
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.

QyX
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Re: Medication causing Apathy?

Postby QyX » Tue Sep 11, 2018 4:19 am

ViewsAskew wrote:Have you all watched the Foundation's webinar on why methadone works better for RLS than other opioids? But, just because it does, doesn't mean that it doesn't come with issues for some of us. And, if it does, it also doesn't mean another opioid will always work (though thankfully it often does). It also depends on the dose needed. I need more methadone than many on this board, so switching to some others isn't effective at all.

A certain percentage of us end up in a dance trying to find something that causes the least number of issues and still lets us function.


It is really interesting to see how well you can handle the methadone.

I only manage to stay on my stable opioid dosage with regular morphine-like opioids because I am adding antiepileptics and often take (super) loses of methylphenidate (Ritalin) in the middle of the night when I sometimes have severe symptoms instead of taking extra opioids.

I've seen the evidence and studied the mechanism of actions of methadone and I have no doubt it is the most effective opioid for RLS, but also the one with the highest amount of side effects, especially when you reach higher doses.

But maybe RLS patients tolerate methadone better on average then patients who are treated with methadone for opioid addiction. Also all the theory doesn't matter much. You need to try before you know. So all the theoretic knowledge is unfortunately not that valuable.

However before I put patients on daily DAs, I would try to reserve them as emergency treatment and put my patients on low potent opioids like Codeine and Dihydrocodeine and combine those drugs with antiepileptics. Then they could DAs as emergency relief to keep the patient as long as possible on low potent opioids. Anyway, who knows if I ever will make it through med school with that severe form of RLS I have. Also I believe the full potential of antiepileptics is not yet fully exploited however in some patients they may have more serious tolerance issues then opioids. The big big problem is that we don't have any proper long term studies and even the best studies for other drugs for other way more prevalent disorders rarely exceed 12 months.

I was so naive to think I am safe on Carbamazepine after about 2 years of taking it. Getting tolerant to it really teached me something about that disorder.

ViewsAskew
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Re: Medication causing Apathy?

Postby ViewsAskew » Tue Sep 11, 2018 5:31 am

Fortunately, most people who use methadone are in the lower range - one small study put it around 12-15 mg, if I remember correctly, and most of them had few side effects. But, as is happening with Steve, even those low doses can have side effects. And, it seems that with most pharma options, longevity is a problem. Few of us can take anything for years. Most of us find they lose effectiveness, that we have tolerance or that side effects become untenable.

It seems to me that as you noted elsewhere, this must be about the practice, not the theory. None of these drugs were created specifically to treat RLS, so most of us need to find a specific option or combo that works for us, individually. And that the option that works for one, will not work for another. As with many of us, I've taken about many pharmaceuticals both individually and in various combinations as well as tried medical marijuana, kratom, massage, acupuncture, diet, and TENS. All of these things can and do work for other people. Not all others, but each thing works specifically for someone, alone or in some combination, yet most of them didn't work for me! And, what worked for me has often not worked for others. To make it more complex, each of us has a completely different side effect profile, too. What doesn't bother me at all is likely to make someone else sick or causes issues.

If I could teach patients and doctors one thing is would be that there are no right or wrong options. What is horrible for one, may be best for another. Sure, we need an algorithm of the most to the least likely, but all doctors should be willing to allow each patient to find a solution that works best for them.

And - YES! Long term study is absolutely needed. We are doing a disservice when we conduct 3 or 4 month studies. We need a cohort we can follow for years. For example, the Nurses study. We should have an RLS Foundation Discussion Board study :-).
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.

Rustsmith
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Re: Medication causing Apathy?

Postby Rustsmith » Tue Sep 11, 2018 7:29 am

In some ways we already have a long term study in the form of the RLS Opioid Registry that Dr Winkelman is running at Massachusetts General. The idea behind that study is to collect data on opioid use in RLS patients for at least 5 yrs. Hopefully the results will justify continued funding after that.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

legsbestill
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Re: Medication causing Apathy?

Postby legsbestill » Tue Sep 11, 2018 7:48 pm

Steve, have you been taking breaks from the cannabis? I seem to recall you experienced a bad bout a year or two ago which you attributed to prolonged cannabis use. I’m sure you’ve thought of this but thought I’d mention it in case ... I hope you get to the bottom of the problem. Absence of joy - or even the prospect of it - is miserable.

Rustsmith
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Re: Medication causing Apathy?

Postby Rustsmith » Tue Sep 11, 2018 8:21 pm

Legs, thanks for the thought and yes, I have been taking regular breaks with even more of late because I had the same thought. The "breakthrough" in my understanding of what was happening occurred last week when I realized that this was not like the cannabis caused depression, which in one case ws nearly to suicidal levels. Also, for years I have been treating my tendency for depression by running. Lately, running has not helped and I even lost interest in it, which is major since running became part of who I am and I still win or place in almost any race I enter, even without training anymore.

This was different. In the case of apathy, you just don't care about anything at all. The best analogy is that apathy is a misty, gray winter day where there are no colors and no signs of any change in the near future. The day is just dreary. By contrast, depression is a major rain storm where everything is black and threatening. I now realize that I have been experiencing the apathy for many months, including a once-in-a-lifetime dream vacation last spring which I sort of enjoyed, but only on a sort of intellectual plane.

I stopped taking methadone over the weekend and the apathy started to improve almost overnight. The only problem is that I don't have a decent replacement treatment, so my RLS has returned to its previous untreated state. For those not around when I joined the board, my symptoms prior to any treatment met all of the criteria for augmentation, including movement needs in my arms and abs. As I remember, my IRLSSG score was 30 out of 40 back then. I haven't been through the questions again, but I would guess that it is now more like 35 or 36 and I have only gotten a total of 6 hrs of sleep in the last 2 days.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

ViewsAskew
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Re: Medication causing Apathy?

Postby ViewsAskew » Tue Sep 11, 2018 10:49 pm

Rustsmith wrote:In some ways we already have a long term study in the form of the RLS Opioid Registry that Dr Winkelman is running at Massachusetts General. The idea behind that study is to collect data on opioid use in RLS patients for at least 5 yrs. Hopefully the results will justify continued funding after that.


Yes. But only on that. We need way more data on all the options.
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.

Rustsmith
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Re: Medication causing Apathy?

Postby Rustsmith » Tue Sep 11, 2018 10:54 pm

One of the questions that I may ask at the conference is why there isn't more research done on the treatment of severe RLS. So much research is done on mild to moderate, drug naive patients. That hits the majority of RLS patients and is great for developing new drugs, but what about those of us who suffer the most? There are a few studies, like Dr Winkelman's and Dr Koo's suicide study, but that isn't the same thing.

And I have already submitted a question about what can be done to help those of us with high ferritin to get the same brain iron benefits as those who are now getting iron IVs.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

ViewsAskew
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Re: Medication causing Apathy?

Postby ViewsAskew » Wed Sep 12, 2018 3:13 am

Rustsmith wrote:One of the questions that I may ask at the conference is why there isn't more research done on the treatment of severe RLS. So much research is done on mild to moderate, drug naive patients. That hits the majority of RLS patients and is great for developing new drugs, but what about those of us who suffer the most? There are a few studies, like Dr Winkelman's and Dr Koo's suicide study, but that isn't the same thing.

And I have already submitted a question about what can be done to help those of us with high ferritin to get the same brain iron benefits as those who are now getting iron IVs.


My guess is that it's a numbers issue. Those of us with severe RLS are a teensy portion of the total population - 1-2 percent of everyone who suffers. Not much money in that.

I guess you could argue that while there aren't many of us, we are the ones who require the most help and consume the most pharma options!
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.

Rustsmith
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Re: Medication causing Apathy?

Postby Rustsmith » Wed Sep 12, 2018 7:19 pm

Update, still waiting to hear back from my doctor about where we move from here, but I ended up confirming that my issue was with the methadone. I was so tired after not getting by 6 total hrs of sleep in the previous 2 days while on Norco that I decided to take half of a methadone pill in an attempt at getting a reasonable amount of sleep. The methadone didn't help (as in zero sleep last night), but what it did was start to bring back the gray, apathetic mood. I don't know why I didn't look at the little blue RLS book earlier, but this morning I realized that I hadn't been taking enough of the Norco nor as often as I needed. So, I was experiencing nights with a combination of methadone withdrawal and untreated RLS. Once I started taking enough today, I have been able to get in a number of long naps and also minimize the withdrawal muscle aches. This also showed me that what I am going to request is Tramadol ER. She has already indicated a willingness to switch to Tramadol, so hopefully I can get some without too much delay.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

Rustsmith
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Re: Medication causing Apathy?

Postby Rustsmith » Wed Sep 12, 2018 10:01 pm

Further update - My doctor is switching me to Tramadol ER for the next few months. She says that she eventually wants me to try to go back to methadone since it did a good job of managing my RLS. But that the decision to do that can wait until I "recover" my mental health. This could end up putting me into a regular med rotation where I periodically switch between meds to avoid the unwanted side effects from both.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.


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