Frustrated with opiates

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Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
rlm
Posts: 26
Joined: Sun Feb 23, 2014 1:41 am

Re: Frustrated with opiates

Postby rlm » Fri Dec 02, 2016 1:57 am

Hello,

Thanks, legsbestill, for your post. I have wondered if I have been experiencing withdrawal symptoms from both the oxycodone and oxycontin. I was only on the oxycontin for one month and on oxycodone for several months before that. My doctor gave me no warning that I might experience withdrawal as I transitioned to methadone but I started wondering about it. As for 20 mg not being enough, my doctor strictly follows the recommended dosages and he won't go higher than the recommended max for any med.

I also believe that my methadone dosage is probably too low but as I mentioned my doctor will only increase my dosage a step at a time after I've been on it for 2-4 weeks. Needless to say, those weeks have been miserable. I had never heard about "alerting" until Steve mentioned it in this thread; thank goodness for this discussion board. I've definitely learned more here and from pharmacists than from any of my doctors.

I hope you have continued success with Neupro/OxyContin. The DAs controlled my symptoms the best until they didn't, although I'm still interested in trying them again with an opiate and perhaps switching them. My ferritin levels are well over 100 so I think I'm good there.

I don't use audiobooks but I get a huge amount of reading done each night and I'm able to read and keep moving most of the time.

Yes, the webinar by Dr. Early was very good. I don't think my doctor is open to some of what is mentioned here and I doubt he'd be interested in what's on the webinar.

Ann,

Yes, it has been torture for way too long and I am going to be checking out two different doctors, one this month and one in January. I was told there is a shortage of neurologists and I can believe it because it's taking two and a half months to get into see one of them.

Regards,
Rebecca

ViewsAskew
Moderator
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Location: Chicago

Re: Frustrated with opiates

Postby ViewsAskew » Fri Dec 02, 2016 3:42 am

Good luck, Rebecca. This disorder can truly drive a person crazy. In some ways, I've lost most of the past ten years to it. Not all of them, but ore than I gained. Having a doctor that gets it is more important than just about anything else. Except maybe for this board :-).
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
Posts: 314
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Frustrated with opiates

Postby QyX » Fri Dec 02, 2016 3:54 am

Opioids alone never really worked. Of course I couldn't expect much from the DAs. After lot's of trying I got them working for about 3 months. Then I had to stop because of augmentation and unfortunately they never worked again.

I also tried Lyrica, Gabapentin and all the other drugs you could possibly think of.

In the end I found out that Carbamazepine is an extreme valuable & powerful addition to the opioids.

Carbamazepine changed everything for me, even more then the opioids did.

All my pain related RLS went almost instantly away and it also had a huge effect on the insomnia.

The insomnia problem came back after around 6 months but all other RLS symptoms were almost completely gone. I was and I am still around 95% symptoms free.

Carbamazepine is a powerful analgesic drug. It is a classic anticonvulsant drug. Not many physicians now it can improve RLS symptoms but still there is some scientific evidence that it does.

Opioids alone never would do it for me and I take 150 mg of Morphine & 8 mg Hydromorphone (8 mg Jurnista 24 hours release tablet).

Methadone is probably the most powerful drug available for RLS but when you still experience severe symptoms and it only works for such a short time it looks like you will need 2nd drug future.

Raising Methadone might help a bit but what you described in your previous posts is that you never really responded that well to opioids.

You might have success with a additional complex DAs rotation regime and some Benzos here and now but it is very likely that DAs will stop working again, much faster as before and after every rotation they will stop working faster and faster. So I wouldn't recommend going down the DAs path again.

I don't know any other RLS patient who uses Carbamazepine besides the cases described in the literature.

Carbamazepine has a lot of potential side effects like all the others anticonvulsant drugs and it doesn't really work well with Methadone because Carbamazepine accelerates the metabolism of Methadone by at least 200%.

So an alternative would be Oxacarbamazepine. It is almost the same drug with a similar side effect profile but without the enzymatic side effects. So there would be no complications combining Oxacarbamazepine with Methadone.

Personally I am not a big fan of Methadone. I would try all the other opioids like Oxycodone, Hydromorphone, Oxymorphone and Morphine before trying Methadone because Methadone has more side effects then all the other opioids. Methadone causes weight gain, can cause severe insomnia on its own and also it has a reputation for causing sexual problems like massive decreased libido. Also sweating is one of the chronic side effects of Methadone which wont go away, even after years when you are affected by it.

Of course side effects are dose dependent but Methadone builds up in the system much more then other opioids and you may develop side effects who hadn't occur in the first weeks.

Hydromorphone would be may opioid of choice, then Oxycodone, Oxymorphone and Morphine.

Good Luck

I tried over 50 drugs before I found a combination of drugs who was working for me.

So don't give up and Good Luck!

rlm
Posts: 26
Joined: Sun Feb 23, 2014 1:41 am

Re: Frustrated with opiates

Postby rlm » Sat Dec 03, 2016 6:58 pm

Thanks for all the information, QyX.

Are you saying you take carbamazepine along with morphine and hydromorphone? I wish I could say that I have had more relief from anticonvulsants but I don't seem to tolerate them well as experienced with Lyrica and Horizant at lower dosages.

I agree with your point that I haven't responded well to any opioids yet and an increased dose of methadone may not work either. It seems like more experimenting is likely for me.

Thanks for your support.
Rebecca

stjohnh
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Location: Palo Alto, California

Re: Frustrated with opiates

Postby stjohnh » Sun Dec 04, 2016 1:02 am

Rebecca, I'm sure QyX means adding carbamazepine to the opiates you are taking. Anticonvulsants are a chemically varied group of drugs and carbamazepine is a different class than the gabapentin/Lyrica/Horizant group. Side effect profile of carbamazepine is much different than Gabapentin and its relatives.
Blessings,
Holland

QyX
Posts: 314
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Frustrated with opiates

Postby QyX » Sun Dec 04, 2016 2:16 am

stjohnh wrote:Rebecca, I'm sure QyX means adding carbamazepine to the opiates you are taking. Anticonvulsants are a chemically varied group of drugs and carbamazepine is a different class than the gabapentin/Lyrica/Horizant group. Side effect profile of carbamazepine is much different than Gabapentin and its relatives.



Yes, I meant adding Carbamazepine (Oxacarbamazepine in case you take Methadone, Carbamazepine if you take an other opioids).

My experience with anticonvulsants aren't that good either. In the past I tried Lamotrigine & Valproate acid (prescribed for bipolar disorder which I don't have but was diagnosed with before diagnosed with RLS) and later Lyrica & Gabapentine later.

Except for Lamotrigine I always had many side effects. The list is incredible long. I tried starting at the lowest possible dose and then increasing it very slowly. It never helped.

Carbamazepine was the first anticonvulsant I tolerated and it helped me starting with the first pill. At the beginning I was able to stop the opioids completely but after around 4 weeks I had to start taking them again.

Yes, I take Hydromorphone & Morphine.

I take one 8 mg Hydromorphone 24 hours extended release pill around 8 am and regular Morphine extended release pills who work around 6-8 hours at 4 pm (30 mg), 8 pm (60 mg) and 11 pm (60 mg) to cover the hole night and early morning.

I don't like it that I had to split up the Morphine in 3 doses but the extended release pills don't work that long it is the only option to cover the early evening were I only have mild symptoms and the late night between 1 am till 4 am were I have heavy symptoms.

Until summer 2016 there was a Morphine 24 hours tablet on the market but the drug company removed it for "economic reasons". Since 2014 Morphine is also used to substitute Heroine / opioid addicts with Morphine in case Methadone doesn't work for them. It appears the drug company can make more money selling this pills to the drug addicts. Also the 24 hour Morphine tablet never was popular in Germany.

Hydromorphone 24 hour pills were heavily marketed and most Doctors had no idea that there also was a much cheaper 24 hour Morphine pill on the market. Also Morphine has a bad reputation so most doctors here use Oxycodone, Hydromorphone or Fentanly patches.

In the past I used regular (10-12 hours) Hydromorphone tablets but unfortunately I developed a tolerance so no matter how much I take they don't work in the hours were I have heavy symptoms. It works all right during the day, helps avoiding withdraw symptoms and keeps me on a stable opioid level.

I also tried only taking regular extended Morphine tablets but I ended up taking much more then I take now. So right now that's the best deal for me. It was better with the 24 hour Morphine tablet but it is still okay.

I also take most of my Carbamazepine at the evening and night. (400 7 am - 400 12 noon - 400 4 pm - 800 8 pm, sometimes +400 at 12 midnight )

And there is Methylphenidat (Ritalin, Medikinet) which I have to take during the day. Otherwise I can't sleep during the night but that's an other issue. I plan on writing about it in the next couple days.

QyX
Posts: 314
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Frustrated with opiates

Postby QyX » Sun Dec 04, 2016 2:34 am

rlm wrote:Thanks for all the information, QyX.

Are you saying you take carbamazepine along with morphine and hydromorphone? I wish I could say that I have had more relief from anticonvulsants but I don't seem to tolerate them well as experienced with Lyrica and Horizant at lower dosages.

I agree with your point that I haven't responded well to any opioids yet and an increased dose of methadone may not work either. It seems like more experimenting is likely for me.

Thanks for your support.
Rebecca


I know how energy consuming experimenting with drugs can be. All this research, the discussions with the physicians, the hope and the disappointment when a new drug has failed ... I know all about it.

I hope you don't loose faith that your situation will be much better one day. The thing with anticonvulsant, like with many other drug is, that drugs from the same chemical class can have heavy side effects while another drug may work perfectly well.

This is way it is so important to continue trying. And I am not any special advocate for Carbamazepine. When I am gonna treat patients one day (I study medicine at Berlin Charité Medical School) I would try anticonvulsants like Lyrica / Gabapentin before even thinking about Carbamazepine.

But Carbamazepine has its uses and it is well known for its good effects when it comes to neuropathic pain. I had positive effects from the first tablet I took so you wouldn't have to wait 4 weeks before you know if it is of any use.

Also you must strictly avoid any drugs and substances who can worsen RLS symptoms, so no smoking, no alcohol, no antidepressants except the ones who only work as dopamine agonists, no L-Dopa, no Dopamine-Agonists, no sleep aids like Melatonin, no drugs who have antihistaminergic properties etc.

When you tolerate Benzodiazepines you could take Clonazepam. I hate Benzos because they create anxiety and worsen my sleep quality but at least at the beginning they had very positive effects on my RLS.

Also the anticonvulsant Valproate acid is an option but I would recommend trying Carbamazepine before Valproate, simply because there is so much more positive evidence for Carbamazepine.

And of course trying all the opioids you haven't used yet is an option.

rlm
Posts: 26
Joined: Sun Feb 23, 2014 1:41 am

Re: Frustrated with opiates

Postby rlm » Tue Dec 06, 2016 1:11 am

Thanks again, QyX.

I came very, very close to losing hope about my situation 2-3 months ago but I'm feeling better about it these days with the help of friends, a good therapist, and this discussion board. In spite of that, I thought I would have better results with one of the opiates I have taken, leading me to this post. But I also realize that everyone reacts differently to each medication. I think the constant drug trials has worn me out and it sounds like you have way more experience with that than I do so thanks for your support.

It has been exacerbated by having a doctor that basically only writes prescriptions so I'm hoping the new doctor I will see soon will be better. He, at least, has lots of experience with opiates and other drugs so that should help.

I appreciate your knowledge and recommendations.

Regards, Rebecca

QyX
Posts: 314
Joined: Wed Mar 13, 2013 12:53 pm
Location: Berlin / Germany

Re: Frustrated with opiates

Postby QyX » Tue Dec 06, 2016 4:24 pm

I tried over 50 different drugs in uncountable combinations. It simply was pure horror. During this time I had a very experienced Neurologist and Psychiatrist as my doctor. He said he never has seen such extreme sleeping problems before ever in his career. And he is 64 years old, has his own practice for over 20 years. So he has seen a lot. I really was a crazy case with a history of psychosis when I was 19, diagnosed with ADD when I was 14 and Asperger-Syndrome when I was 27. I had around 10 other psychiatric diagnoses who all turned to be wrong including schizophrenia, bipolar disorder, general anxiety disorder, anti-social behaviour, adjustment disorder, development disorder, ... and so son.

From my perspective not responding perfectly well seems like an absolute manageable problem. Most definitely there is a solution to your problem. It is just a matter of time until you have found it.


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