Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.
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.
Sometimes the personna we fake, if we act it well enough, becomes real, and eventually the complications don't matter, it's ok to accept that the gifted intellectual you're playing the role of is really you.
The sleep psychiatrist I see every few years, the first time I saw him, he said it was almost like I had PTSD. Your history has much more trauma than mine; I can't imagine what he would have said about you... when you say war, it's a good analogy.
Transition into normal life is complicated.
Yes.
I suspect you've accomplished more than most people do in a lifetime, and you've only just begun. Never mind how to measure or itemize it; that might become clear later, or it might not, but who cares.
Beth - Wishing you a restful sleep tonight Click for info on WED/RLS AUGMENTATION & IRON I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.
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.
I know for sure I don't have PTSD. Right now I work at a Psychiatric Hospital. We have many patients with PTSD there and lucky me I have no such symptoms. Thanks for your post badnights.
Last week I returned from Hydromorphone to Morphine. After over 12 months on Hydromorphone I had developed some form of tolerance. Even raising the dose from 20 to 40 mg didn't help. So I was taking fast acting Oxycodone every night. I don't like dose escalation and tolerance and opioid rotation has proven to be an effective tool managing opioid tolerance.
Still no trouble sleeping.
I was quite happy that the neurologist I see for a year now had no problem with rotation. When I first spoke with her about it she recommended raising Hydromorphone and fast acting Oxycodone at night. This worked for a while but now I was scared about further increasing Oxycodone at night and I was frustrated that doubling the Hydromorphone dose had no effect.
Now I am on ~ 150 mg of Morphine and it feels like taking a complete new drug, like I have never taken an opioid before. Next time I won't wait this long. I will rotate back to Hydromorphone when I feel the need to take short acting Oxycodone again.
Because I develop dry eyes I don't take extended release Oxycodone pills. Short acting is okay but when I am 24/7 on Oxy, my eyes become very dry, red and uncomfortable.
It's great that you can manage your own care like that. More physicians should encourage opioid rotation, I wonder why they don't? simply not aware of the potential benefits, or too complicated to administer for most patients?
I don't seem to need it, myself; I've actually reduced my hydromorphone dose since eliminating gluten, casein, & sugar and adding other good stuff - - don't know which changes were critical to the dose reduction, though.
Beth - Wishing you a restful sleep tonight Click for info on WED/RLS AUGMENTATION & IRON I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.
badnights wrote:It's great that you can manage your own care like that. More physicians should encourage opioid rotation, I wonder why they don't? simply not aware of the potential benefits, or too complicated to administer for most patients?
I don't seem to need it, myself; I've actually reduced my hydromorphone dose since eliminating gluten, casein, & sugar and adding other good stuff - - don't know which changes were critical to the dose reduction, though.
Probably physicians simply don't believe in opioid rotation and think that it will only increase tolerance and potential for abuse.
Maybe they simply don't know about the possibilities and don't know how easy it is.
When I rotate, I stop taking opioid #1, wait until moderate RLS symptoms kick in and then I start opioid #2.
There are many lists who give adivce how to select the appropriate equivalent dose.
Right now I am on ~ 150 mg of Morphine after 74 months of opioid treatment.
After 3 months I was on 80 mg of Oxycodone which equals 160 mg of Morphine. So nothing really has changed.
I can't see any tolerance and my strong opinion is that opioids are a safe long term treatment option for many RLS patients, suffering from mild to very severe symptoms. Makes me sad when I read that physicans won't increase the dose over 20 mg of Oxycodone of tolerance. Every individual has its own needs. Opioids can be dosed very high. Stopping at 20 mg Oxycodone when the drug has proven to work is in my opinion simply stupid. I consider myself lucky having a physician who is listening to me and values my input.
my strong opinion is that opioids are a safe long term treatment option for many RLS patients, suffering from mild to very severe symptoms. Makes me sad when I read that physicans won't increase the dose over 20 mg of Oxycodone of tolerance. Every individual has its own needs. Opioids can be dosed very high. Stopping at 20 mg Oxycodone when the drug has proven to work is in my opinion simply stupid. I consider myself lucky having a physician who is listening to me and values my input.
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Beth - Wishing you a restful sleep tonight Click for info on WED/RLS AUGMENTATION & IRON I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.
I haven't posted in a while because things went good and I was well despite the usual ups and downs. Now there have been some developments.
In this board I was told that taking Melatonin may worsen RLS. I couldn't believe it because taking it helped me so much going to bed after at a regular time after I had to stop Quetiain and some other sedating neuroleptic drug because of side effects who were worsen my RLS symptoms.
I have to say that after a while I noticed that I developed more severe RLS symptoms 10-20 minutes after taking Melatonin but with taking more Morphine these symptoms were easy to battle. Yes, unfortunately were...
Becoming tolerant to opioids now has become a major issue. I have been telling myself that I won't be affected by tolerance issues because I don't abuse and because I am lucky and because it just won't happen but of course ... this is not things work.
The opioid receptors in the human brain are very well known to develop a tolerance against opioid agonists like Morphine, Oxycodone, Methadone, ...
This doesn't really matter when you take opioids only for a few weeks or months after an operation or accident or for cancer pain, it's clear you are going to die were the opioid dose can be increased all the time and it doesn't really matter how much you take in the end. However, it is a completely other story when you are 31 years old, you already took potent opioids for the past 4 years and taking opioids for the next 40-50 years is your best treatment option. Then managing tolerance becomes a major issue. I was blinding this out because it went relatively well with the opioids and I thought this is just the way it always will be.
I was naive!
When we started with Oxycodone in 2012 my average daily dose after 3 months was 80 mg. I still had a lof of symptoms but it was cutting the edge of and a further increase didn't improve my symptoms. (80 mg Oxycodone equals 160 mg of Morphine and because I was swichting between opioids a lot, I will just the Morphine dose to make it easier for me). 160 mg of Morphine worked well for me a while but at some point I started taking around 200 mg, maybe after 1 1/2 year because it just felt better and hey, taking just 40 mg more isn't that much, or? Well, that's what I thought but this was one big steps forward developing a tolerance.
Later then I started taking Serqouel and a 2nd neuroleptic to battle insomina. Med school started and without taking potent sedating drugs I couldn't maintain a proper day / night rhythm. Antipsychotics / neuroleptics worsen RLS symptoms and to battle the extra symptoms, I had to increase my opioid dose, again. I think I went up to 240 mg.
This worked out for a while. I also started taking stimulants at the night because it helped a lot with battling antipsychotics side effects.
Then, July 2015 I started developing severe RLS symptoms. My brain stopped tolerating taking antipsychotics at night. I started to have really extreme RLS symptoms again and my only option was to stop the antipsychotics immediately. It also turned out that I had become tolerant against Hydromorphone, the opioid I was taking back then which was ultimately the reason I switched to Morphine.
I was in a lot of pain and over 2 months my dose went up from 240 to 420 mg!
But there was a big big win: I was finally able to the antipsychotics and taking 5 mg Melatonin at night didn't seem so bad.
I thought: okay, here I am with 420 mg Morphine but now I am not taking any bad drugs anymore. Now things will stay as they are.
But here it is: they didn't. Taking 420 mg of Morphine at the age of 31 for no cancer pain is a lot. I know that and I know that my neurologist is tolerating a lot with me. So I didn't complain when she started complaining about dose increase back in the summer when I went up to 420 mg. I knew she was somehow right but what can I do? Even with taking 420 mg of Morphine I sometimes had a lot of symptoms. And also there was nothing she was able to tell me what to do. She has no other patient like me. So she was okay with 420 but more? I knew this was going to be problematic and I also knew, that when it comes to this point, the situation will spin out of control fast.
I was having semester holidays and working at a hospital at this point. I had to do some course for the university there. All medical students in Germany have to work for 90 days in the nursing department of a hospital, so that we experience the situation from a nurse's perspective.
I had 86 days covered but then I became ill. In the two weeks before that I started developing more and more RLS symptoms but I didn't really notice them as such because I was under a lot of stress, walking / running up to 9 km in the hospital alone. There were no free weekends and it only happened once that I had two free days at once. Without really noticing it I increased my dose up to 500 mg Morphine, probably sometimes even more. I also started smoking again because it was the only legit way to escape the station for some minutes, get some fresh air, ...
I was swichting back from late shift into early shift when I had such severe RLS symptoms again that I wasn't able to sleep anymore. Taking more Morphin didn't help. It looked and felt like the way how I became tolerant to Hydromorphone ... and now Morphin, too?
It was pure panic because my only option left now was switching back to Oxycodone. (Yes, Methadone would be an option too but it comes with so many possible side effects and my neurologist never prescribed Methadone before so she very likely would want to talk to an expert before I could get an prescription).
Oxycodone comes with a nasty side effects: I get dry eyes so when I take Oxycodone for some weeks and I have to use this artificial eye drops up to 10 times a day or I will cause severe damage to my eye. So Oxycodone is bad a option but taking it for 4 days, so that I can finish internship is okay. Also this internship had a deadline. I have to finish it at a specific date. If I miss that date, I will lose admission for this semester, repeat the internship and lose 6 months time.
But bad luck, when I came seeing my neurologist, she wasn't there. She already was on vacation and here replacement wouldn't give me a prescription for Oxycodone. She would write me a sick note unitl my neurologist is back but that would have been in 2 1/2 weeks ... I couldn't wait that long. This would completely destroy my next 6 months and how was I supposed to deal with these severe RLS symptoms?
This could have kicked me into a severe depression. I really was crying badly and she tried to calm me down but it was impossible. Somehow some kind of dialogue developed were I asked here to look into my file were it says that I already took Oxycodone in the past for some months. So she knows that I have experience with this drug and it is unlikely, that I will harm myself or do anything stupid. She asked for some time and after she dealt with the last patient, she talked to me again and wrote a Oxycodone prescription.
I finished this 4 days and then I discovered the following:
- smoking is real bad for RLS. After I stopped smoking and taking the Melatonin, my RLS symptoms improved a lot. I was able to manage my symptoms again with Morphine and able to reduce the dose from 420 to 300 mg! (reducing was still hard, in the first days I had a lot of extra symptoms but the situation improved).
Now I spoke to my neurologist. She really fears tolerance and thinks that it is likely that we have to do something radical at some point. By that she means that I stop taking opioids for 6 months or take them only at a very low dose, like 60 mg Morphine.
This scenario scares me. I can't imagine to live without appropriate opioid coverage. My life before I started taking opioids was hell and it took 1 1/2 year opioid therapy after my situation finally really improved and then again one more year until I was able to stop the antipsychotics. Stopping the opioids, that would be a horrible withdraw at some point, when all the RLS symptoms come back and there is nothing I can do against them.
I have tried all the drugs available. Except Carbamazepine, which I take together with Morphine for around 2 1/2 years now, all other drugs worsen my symptoms.
My neurologist wont force me to withdraw from the opioids as long as I don't need more then 420 mg and now with 300 mg, if it just stays like this, everybody would be happy. I will see if I can get it down to 240. It's much better I try reducing the dose now, under my terms, were I have enough Morphine available if I should need more. I also will gain experience for the future.
So, that's my situation now. Opioids are a complex topic. If people warn you about tolerance ... there really is some truth to it.
Hydromorphone still doesn't work for me anymore. Sometimes I tried taking it instead of Morphine. It works around the day but at night it is too weak and increasing the dose doesn't help. I am really worried that the same might happen with Morphine. So that's why I try cutting my dose as low as possible.
But see: it might not happen next year or in 5 years or in 10 years ... I have so many more years ahead ... and this just scares me
I understand your concerns. I've been lucky that I can alternate drugs and prevent tolerance. I had it originally and after tripling my dose over 3 years I was very worried. I was close to maxing out my daily dose. It's been about 5-6 years now, and I have only increased my opioids once since then.
I cannot remember what your serum ferritin is. I've had two infusions and they have helped more than I hoped. No, my symptoms have not gone away, but when my ferritin is over 200, they are lessened by about 45%. That is remarkable.
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.
I have news: last week I was practically forced to stop taking Melatonin. It was causing more and more RLS Symptoms and opioids had almost stop working. I was in danger of developing a huge opioid tolerance.
I was really lucky at this point because I found a drug, Agomelatin (Valdoxan in Germany) who also stimulates melatonin receptors but doesn't have the negative effects of the melatonin. After some days I was able to reduce my opioid dose by about 2/3 of my average dose in the past weeks and now I'm only taking 20 mg more Morphine then I was taking 3 months after I had started taking opioids.
If things now just will stay as they are ...
I was really scared because it looked like that I have to start taking Methadone to reduce opioid dose. In my opinion melatonin already is a sleeping aid with only few side effects but it caused more and more problems every month. I had a couple of emergency appointment until I came with the idea of taking Agomelatin.
Again, none of the doctors had any clue what to do. Horrible!
I have trouble believing it but I still have no sleeping problems whatsoever!
Morphine and Carbamazepine alone are working for me.
Carbamazepine is a really potent ZNS depression drug. Not that it sedates you a lot but somehow, the longer I was taken it, the more easier it became to sleep. If I take too much, especially around noon, it reduces my motivation a lot and I tend to fall asleep easy in the afternoon.
I have trouble reducing Carbamazepine at daytime because it simply works so good against my RLS symptoms and because of Carbamazepine's complicated pharmakokinetics, it has been proving difficult to reduce the dose.
That's the last issue I am having now ... in over 10 years my situation was not as good as it is now.
I really would advice others to try Carbamazepine. There have been some small studies who proved that Carbamazepine is working for RLS and it might be an alternative when Gababenptin und Pregabalin are not working or you still have these horrible insomina issues were RLS symptoms are gone and you are still only able to sleep 2-3 hours at night. A small dose Carbamazepine could do wonders...
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.
I really do believe in Carbamazepine. When I started taking this drug 2 years ago it was the first drug who instantly able to influence my insomnia in a positive way.
Carbamazepine is a classic antiepiletic drug. They started marketing it in the 1960. It has a long list of potential side effects as all anticonvulsant / antiepileptics drug have. Some people just don't tolerate it but it can be a long term solution for this insomnia mess.
Every neurologist should now about Carbamazepine. It is a classic but with marketing all these new expensive antiepileptics many physicans forgot about the potential of Carbamazepine.
When you take Methadon, it might not be wise to take Carbamazepine because Carbamazepine accelerates metabolism of Methadone by activating the CYP450 system. There is some alternative you can take then: it's called Oxacarbazepine. It is almost the same as Carbamazepine, just one atom was changed. Oxacarbazepine was introtruced in the 1980s and doesn't have so many effects on the CYP450 system. This is relevant when you take a lot of other drugs where metabolism is affected by Carbamazepine.
I consider this insomnia issue the main issue from living a normal life in RLS. It doesn't matter so much to have some RLS hours a day as long as you get a good night sleep. But that's just that what of us are missing. So I couldn't stop looking.
I don't want to advertise Carbamazepine. I do know that many patients do not tolerate this drug because of side effects but when you have tried other antiepileptics like Gabapentine or Lyrica (Pregabalin), Carbamazepine might be worth a try. If you have to pay for the drug by yourself, a 60 day ration would likely won't cost more then 20-30 $.
Qyx, you stated that when you stopped the melatonin you cut the morphine by 2/3. I believe that in addition to no longer antagonizing dopamine at night and thus needing less morphine, the long term and high use of melatonin had up-regulated your receptors. When I stopped the melatonin my RLS didn't just go back to being mild and intermittent it went completely quiet for about two years. Now mind you, it might have been the combination of melatonin and iron that gave me two years of silence, but still, I just wanted to point this fact out to you because you weren't taking iron so that leaves just the melatonin. You gotta get back to homeostasis - for all of us - so then you can discern what works. Nothing like a bunch of parasites counting on you to come up with some answers to help you sleep at night, right. By the way, even when I have just plain old insomnia without RLS, the ferrous bisglycinate knocks me out. I think that lack of brain iron and lousy dopamine transport system not only causes RLS but insomnia as well and that's why people with RLS also suffer from insomnia. So theoretically getting iron to the brain should help both.
Nothing like a bunch of parasites counting on you to come up with some answers to help you sleep at night, right. By the way, even when I have just plain old insomnia without RLS, the ferrous bisglycinate knocks me out. I think that lack of brain iron and lousy dopamine transport system not only causes RLS but insomnia as well and that's why people with RLS also suffer from insomnia. So theoretically getting iron to the brain should help both.