some one with opioid-induced insomnia. I need help from you.

[halperinchen]

I need help from those who suffers from opioid-induced insomnia. I still suffer from severe insomnia from oxycodone I am taking. I hardly get 2 hours sleep every night without any sleeping meds. The Xanax I only take three to four days a week for fear of tolerance and loss effect eventually. Even with Xanax I only get four hours of sleep. The lack of sufficient sleep severely compromised the quality of my life. If some of you have the same experiences and please tell me how do you cope with the insomnia and do you switch to different opioid which has less insomniac effect. Your input definitely will help me because I have no one to turn to for help, the doctors definite can't help. Thanks.

[Birdland]

Hello halperinchen. I stopped taking oxycodone because of insomnia. Even though it alleviated my RLS symptoms, I still couldn’t sleep. Very frustrating. I was able to switch to methadone which does not cause insomnia for me.

[halperinchen in reply to Birdland]

Hi Birdland, thanks for your reply, your reply gives me some hope. I do have methadone although it expires on 4/20. My questions for your is that do you do an instant switch from oxycodone to methadone? Do methadone give you any unpleasant side effects? How long did you take Oxycodone before switched to methadone. I only took methadone once and am unable to tolerate the side effects so I stop taking it. I may try it again. Thanks again.

[Birdland in reply to halperinchen]

I understand your frustration with the various side effects of opiates. My history with opiates is a long story. My doctor is Dr Buchfuhrer in Downey Ca. I first tried opiates after my first appointment with him 3 1/2 years ago. I went to him because I was experiencing terrible augmentation from Ropinirole. I tried Methadone, Oxycodone, Morephine, and Belbuca. They all made me EXTREMELY sick with HORRIBLE nausea. So much so that I kept failing at kicking Ropinerole. But that's another story. I take a small amount of Methadone now, but I have to be very careful because, as you know, it is very strong. I have now found a balance and know how much my body can tolerate. I have decided since all opiates make me sick, why not take the one that doesn't give me insomnia. I hope you find a solution that works for you.

[halperinchen in reply to Birdland]

Hi Birdland, is your insomnia getting better or stops once you switch to methadone or it is a gradual process?

[Birdland in reply to halperinchen]

My insomnia stopped the first night I stopped taking Oxycodone.

[halperinchen in reply to Birdland]

Hi Birdland, I admire your courage and perseverance and have read your story, and respect you for your persistence. We share the same doctor, Dr. Buchfuhrer who also prescribed methadone once, I only took once and was unable to tolerate its effects so I stopped taking it. I will try it again to see what it happens. Thanks for your reply.

[halperinchen in reply to Birdland]

By the way how long have you been taking oxycodone before you did the switch to methadone?

[Birdland in reply to halperinchen]

Methadone was the first opioid I tried. I took it for 4 weeks before dr B switched me to Oxycodone because of side effects from Methadone. Didn’t make much difference. Still got very, very sick. Then almost 3 years later I took oxycodone for about 6 months. At that time I wasn’t sleeping much because of my intense ropinirole withdrawal, so I can’t say whether or not it gave me insomnia. But when my RLS calmed down enough to be able to actually stay in bed for any amount of time I found myself still unable to sleep even though my legs were calm. I was relaxed but just couldn’t sleep. So I switched to methadone in July. No insomnia. That’s not the end of my story with ropinirole and opioids. I keep meaning to post an update but haven’t yet. Finding the correct meds for RLS is such a difficult process for some of us.

[halperinchen in reply to Birdland]

Hi, Birdland, thanks for the update which I appreciate very much. yours is a very interesting story, and also an educated one in which we can learn a lot from it, please continue to update with your story with Ropinirole and opioids and we shall learn from it. Thanks.

[LotteM]

Hi halperinchen, I have a similar story to birdland. I was on oxycodone/oxycontin and lay awake with quiet legs (later on with returning mild symptoms, but enough to get me out of bed). Mainly because of the latter I - after much talk to my neurologist - got switched on my request to buprenorphine/Temgesic. Since I sleep almost uninterruptedly for 7-8hrs, sometimes longer. I think it is slowly becoming clear that oxycodone is not the best opiod for RLS, but may it is because of the large amount of people that now use it and there is always a percentage of users that also suffers side effects to the extent that it makes them look for an alternative. I hope you can convince your doctor to try another opiod.

Are you in the UK or US? Methadone is extremely hard if not impossible to get in the UK, but quite a few people have been prescribed buprenorphine/Temgesic.

[halperinchen in reply to LotteM]

Hi, LotteM, thanks for your reply, I did try Belbuca (buccal film of buprenorphine) and still suffer from insomnia unfortunately. I am located in the USA and have a very reputed doctor who is willing to prescribe Methadone. I may give methadone a try to see what happens. Thanks again.

[LotteM in reply to halperinchen]

Good to hear, halperinchen. Please report back. And please realise that some things just are what they are, as we are all different. But your insomnia sounds particularly bad. It is a long search for your personal holy grail.

[BeachGolfer]

I take Oxycodone and have insomnia but do not believe it is Oxycodone induced. The reason is that when my Oxycodone was increased my sleep improved. My RLS got worse this past year ( triggers developed etc). I had been on 5mg for a very long time. My neurologist increased it to 7.5 but due to the fact that it’s short acting I was still waking up too frequently. The dose was increased to 10 mg. I started taking 7.5 before bedtime and then the extra 2.5 when I wake up. This made a big difference in my sleep as I stopped waking up every 2 hours or so. I don’t sleep through the night ( I wish!) but I fall back to sleep. In addition to the increased Oxycodone I take 100mg of hemp derived CBD oil (no THC) as THC interferes with my sleep. I’m offering this as food for thought. I wish you well.

[halperinchen in reply to BeachGolfer]

Thanks for your reply, does the 100 mg of hemp derived CBD oil give you a decent-hour' sleep? I just found a brand Hempland USA Cannabital Hemp CBD oil I will try. Thanks for your suggestions.

[halperinchen in reply to BeachGolfer]

Hi, BeashGolfer, I understand that you are taking Hemp/CBD oil with Oxycodone, my question for you is that are you taking the 100 mg of hemp derived CBD oil every night? Does the CBD oil you are taking reduce the effectiveness of the Oxycodone? I have been taking 83.4 mg of CBD oil in the past half month every night, and find that it reduces the effectiveness of the oxycodone. I had to increase the dosage of Oxycodone in order to control my RLS since I take the CBD oil. Since you are also on CBD oil so I am asking you this question. Thanks in advance for your reply.

[BeachGolfer in reply to halperinchen]

Halperinchen, I take the hemp derived CBD oil every night. Rather than decrease the effectiveness of the Oxycodone I feel that the CBD compliments the Oxycodone. I know It’s so frustrating trying to figure out how to deal with the torture of RLS. Especially when something might seem to work one night then the next night or week it doesn’t 😢. I wish you the best in figuring it out. I’m still trying as well…

[halperinchen in reply to BeachGolfer]

Thanks for letting me know, BeachGolfer

[BeachGolfer]

Honestly, it’s hard to tell how much effect the Hemp/CBD oil is having vs the increased Oxycodone. I do know that the Hemp oil alone was not enough to keep me sleeping longer but I do always feel sleepy about 2 hours after I take the capsules. The brand I use is Syncronicity. I live in the States.

[halperinchen in reply to BeachGolfer]

Thanks a lot for the CBD info, BeachGolfer.

[lorri214]

I never thought oxycodone caused insomnia for me. I have restless legs. The oxycodone helps somewhat with rls. Nothing is perfect. But I have not been sleeping well due to rls. There is no cure for rls. Drs would like me to switch meds but I am afraid due to withdrawal symptoms. Do you have rls? Why are you taking oxycodone if it causes insomnia?

[halperinchen in reply to lorri214]

Hi, Lorri214, yes I am a restless leg sufferer, and a severe one, refractory. I am taking oxycodone for my RLS with good effect. Oxycdone don't give me any unpleasant side effects but insomnia, I am not able to sleep for more than 2 hours at a time and become wakeful all night. I don't know which opioid I can switch for to have less insomniac effect. It's frustrating and sad that I have to take it to control my RLS symptoms and without it my rls symptoms will not allow me to sleep either.

[lorri214 in reply to halperinchen]

I do not sleep well either. I never associated it with oxycodone. How do you know the oxycodone is causing insomnia.

[halperinchen in reply to lorri214]

Hi Lorri214, Usually one of the side effects for any opioid is insomnia. About 49% of people are having insomnia side effects, it means another 50% are not affected. I see a lot of the members of this forum taking opioid but not having insomnia. But unfortunately I belong to the 49% of them.

[RLSEXP]

Hi halperinchen

I know just what you mean. Like you I have tried various approaches and suffer with the opioid alertness/insomnia but it has settled down a lot over the last few months. I still have the odd night of pounding heart, nausea and insomnia.

Like LotteM I take the Temgesic-one to one and a quarter tabs under the tongue around 8 - 8.30 at night. I take 0.25 Zanax every night. I do not believe I have a tolerance to it yet as never had to increase the dose. This small amount as I get into bed, seems to assist with settling my body. (been on this approach for about 12 months now). As I said before my approach does not always work, some nights alert, some nights RLS but infinitely better than life with Ropinirole and I do have some really good nights of rest. ( I have a Fitbit smart watch which records my sleep score).

I know that the Temgesic is another form of buprenorphine as the Belbuca is, but maybe the dose or the approach may assist?? I did not think my alertness would settle and like yourself I reached out for help. There are others others who have had the same problem but after a while the severe alertness/insomnia did settle down. By the way I make a point of doing a fair bit of exercise during the day and I go out dancing a lot to ensure I am physically tired. Good luck.

[halperinchen in reply to RLSEXP]

Hi dear rlsexp, I appreciate your reply very much, it gives me a lot of encouragement as not to worry about the insomnia excessively as the severe insomnia will settle down eventually and I will not worry about the tolerance of Xanax when knowing you are taking it every night and never develop tolerance to it. I am now taking ambien (sleeping pill) and pregabaling 300 mg two hours before going to bed and find my insomnia getting better. Keeping my finger crossed! I am cutting the 5 mg oxycodone a little bit each night tryin to taper it off and replace by 300 mg pregabalin eventually. I don't know it will work or not. Wait to see. Thanks a lot for your reply.

[BAK524]

Hi halperinchen. I was prescribed methadone by Dr. B and last night I took 2.5 mg before bed. It caused extreme insomnia. I'm wondering how your opioid induced insomnia is doing for you. (I can't tolerate pregabalin and also take CBD oil).

[halperinchen in reply to BAK524]

Hi Fatniss, I am still taking oxycodone but not 5 mg as I had been taking in the past 5 years, but 15 mg now since I tapered off the pregabalin 300 mg which worsened my rls symptoms. I had only been taking pregabalin 300 mg for three months to try to replace the oxycodone. Somehow the pregabalin worsens the symptoms. I have stopped taking the pregabalin completely now. My insomnia is getting better since I take the Hempland USA CBD oil. The 83.4 mg pretty much gives me 6 - 7 hours sleep as I take every night before bed. HempLandUSA.com is the website you can place an order for. Make sure to get quality CBD oil. Hempland CBD oil is tested by an independent third party lab.To sum up, I am taking 15 mg oxycodne for RLS and 83.4 mg of CBD oil for my insomnia. By the way how are your doing with dipyridomole? Are you still taking it with effect? How is the headache?

[BAK524 in reply to halperinchen]

I'm wondering if I should discontinue with the methadone. I had such high hopes for it. Why did it not work for you? It seems that. most people have success with it. My leg was calm but I slept only 30 minutes last night. I have been taking a product from Lazarus Naturals, called "Sleep Tincture", which contains a combination of CBD, CBN, and CBG. I usually take it 2 hours before bed, but last night I forgot it. I probably take around 80mg. It does help me relax some.

That's an interesting observation you have about the pregabalin. For me it gives me anxiety and insomnia, and I've had a tough time weaning off of it. I'm at 50 mg and plan on continuing a very slow taper. I know there are other forum members that believe it makes their RLS worse. Dr. B described it as a "funny" drug, meaning it affects different people in different ways

The dipyridomole is OK but I don't use it on a regular basis. It really just takes the edge off of symptoms, and takes a little while to work. The headache is still an issue. I might take 150mg twice in a 24 hour period.

I'm glad to hear that your insomnia has lessened. I'm hoping that Dr. B can help me get through my issue. I'm not sure if he will suggest I continue with the methadone, or move me on to oxycodone.

I saw in a previous post of yours that you are insured by Kaiser. I am too. Do you have a neurologist? Have you tried to get your oxycodone though Kaiser?

[halperinchen in reply to BAK524]

I had a bad experience with Kaiser. Over the years I had to pay oxycodone on my own, but somehow my primary physician found out that I had been taking oxycodone, he refused to prescribe any thing such as klonopin, pregabalin, etc when I refused to participate in the detox rehab program they suggested to quit taking it. Therefore I have to switch to another HMO (Alignment) which is ok to fill my scrips prescribed by Dr B. Dr B I just visited him on 4/14 this month reassured me that he is willing to help with different opioids to try to find a right one with less insomniac effect and he also reassured me that he has been training 7 to 8 doctors per year to make sure some day he has someone to take care of all his RLS patients if he has to retire. what a compassionate doctor he is, I came home very relieved about the uncertain future without access to opioids thanks to him. We are all different individuals who react differently to meds. I feel if my insomnia can be relieved somewhat by the CBD I stumbled upon, your methadone-induced insomnia will also be helped. This is my six sense. Why give it another try with CBD before bed to see what happens. I do have dipyridomole at hand but am afraid of the side effects, headache and stomach ache. I will probably give it a try one of these days. Good Luck.