Help for the reason of insomnia - Restless Legs Syn...

Restless Legs Syndrome

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Help for the reason of insomnia

halperinchen profile image
27 Replies

I need help again. Hi, fellow sufferers, I am suffering from frequent anxiety attacks and unable to sleep even for a few minutes these days. As I have posted last time with the same issue. my intense anxiety is due to not knowing if my insomnia is from oxycodone 5 mg I have been taking or from anxiety. I have been taking oxycodone 5 mg since the beginning of 2017 ( or 2016) without any side effects, but since the beginning of 2021 I started experiencing insomnia, occasionally in the beginning , progressed to very serious from Aug until now that I have severe anxiety over the possible cause of oxycodone since I have no other medication effective for my refractory RLS, I have to take it to relieve my dreadful symptoms. I need your opinion especially those who have been taking oxycodone concerning the insomnia issue, Do you also experience insomnia taking it? Is possible to have the side effects after almost 4 years of taking it? Your reply will greatly be appreciated. Thanks!

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halperinchen
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27 Replies
Joolsg profile image
Joolsg

Opioids can cause insomnia and anxiety but it's very unusual for it to happen after 4 years. Is the 5mg oxycodone relieving the RLS?Has anything happened in your life to cause the anxiety?

A possibility would be to discuss adding a small dose of pregabalin with your GP. Pregabalin helps anxiety and RLS.

I always get panic attacks/anxiety whenever I start an opioid and pregabalin sorts it out over 5-8 weeks and then I reduce it and the anxiety has gone.

halperinchen profile image
halperinchen in reply toJoolsg

Thank you Joolsg for your prompt reply. Yes, the 5 mg oxycodone relieves the symptoms pretty good, the most of the night I only need one, two when I am coming down with a cold. I am also taking pregabalin 75 mg to elevate my glutamate level ( I am unsure if it is a correct approach) and anxiety without effect. I think that my severe anxiety occurs after I learn that chronic use of opioid would cause insomnia. Knowing that the only medication I can take to relieve my refractory RLS is opioid. It gives me serious anxiety attacks. so that I can hardly sleep for 1 or 2 hours per night. It is a great comfort to know it's unusual for it to happen after 4 years according to some of you here. Would you please elaborate on the reason why the length of time makes a difference. I am not sure about the reason for my insomnia, the covid pandemic and the loss of my mother in 2018 might play a role, but I am not sure.It is a godsend to have a forum like this I am very grateful.

Joolsg profile image
Joolsg in reply tohalperinchen

It is just very unusual to develop anxiety due to opioids after that length of time.To alleviate your anxiety, have a look at Dr. Winkelman's opioid study which shows low dose opioids are safe and effective and it's unusual to develop tolerance. Also, you are on an EXTREMELY low dose of oxycodone. The average dose is 30 mg a day so if 5 stops working, it would be easy to add another 5 or 10. Also, you can switch between opioids if the oxy ever loses efficacy. There are several other opioids which affect different receptors- also listed in the Opioid study below.

I would urge you to take up deep breathing, yoga and mindfulness as I think your insomnia is most likely caused by your anxiety.

massgeneral.org/rls-registry

halperinchen profile image
halperinchen in reply toJoolsg

Thanks, Joolsg, your theory very much alleviates my anxiety somewhat knowing my insomnia is not related to the oxycodone I am taking. I do suffer from Mind-Body syndrome, I used to have chronic physical pain without any structural damage and cured by reading the book "Unlearn your pain and anxiety and depression" written by Moward Schubiner, MD. I just have to convince myself that my insomnia is related to my Mind-Body Syndrome not oxycodone. I am reading Dr. Schubiners book diligently to try to relieve both of my insomnia and anxiety, I just need reassurance that I still can continue taking the opioid which is my only solution. Thanks for all the information.

Joolsg profile image
Joolsg in reply tohalperinchen

Excellent idea. I'm sure it will work well.

BeachGolfer profile image
BeachGolfer in reply tohalperinchen

You may want to try taking a high quality Broad Spectrum CBD oil two hours before bedtime in addition to the Oxycodone. This has helped make me sleepy ( I too take Oxycodone) . I take 100 mg. of CBD from company called Syncronicity. I know that others on this forum prefer CBD with THC but that doesn’t work for me. Hope this helps.

halperinchen profile image
halperinchen in reply toBeachGolfer

Thanks, BeachGolfer, may I ask you if you experience insomnia from Oxycodone and how much dosage are you currently taking?

Thanks

halperinchen profile image
halperinchen in reply toBeachGolfer

By the way, the CBD from Syncronicity give you palpitation as THC?

BeachGolfer profile image
BeachGolfer in reply tohalperinchen

I don’t get palpitations from THC or CBD. I just can’t sleep when taking THC . I feel too “ stoned” and for me it’s not a feeling conducive for sleeping., CBD just makes me sleepy.

Elffindoe profile image
Elffindoe

I believe you're on the right track and your anxiety sounds as if it's independent of oxycodone.

Anxiety can exist without any reason for it. This is General Anxiety Disorder. (GAD), This can include panic attacks and insomnia.

The insomnia can become a habit - chronic insomnia.

Obviously you should avoid medical treatment. This would be antidepressants which would make your RLS worse.

If you look into it you will find all sorts of self help strategies to deal with GAD. These will be "behavioural".

halperinchen profile image
halperinchen in reply toElffindoe

Thanks Elffindoe, your knowledge has always been helpful. I still need taking Xanax to get some sleep a few days. Other days I just have to suffer. By the way I am reading the book "Say Good Night to Insomnia" by Gregg M. Jacobs, PH.D. which is a very good book.

Birdland profile image
Birdland

I can only tell you of my experience. I took oxycodone for a few months without a problem then suddenly started experiencing insomnia. I can’t take opioids too often because they make me sick, but when I do I take methadone which doesn’t cause insomnia for me.

halperinchen profile image
halperinchen in reply toBirdland

Thanks for your response, Birdland. How long have you been taking methadone, do you have any side effects from it?

Birdland profile image
Birdland in reply tohalperinchen

Halperinchen, I have a difficult time with all opioids. If I take them every night, eventually I will become extremely sick and have to stop for a few months. Methadone is a bit stronger than oxycodone so I have to be particularly careful. But in general, I don’t experience any side effects from methadone that I didn’t experience with oxycodone. Only difference is no insomnia with methadone.

Birdland profile image
Birdland in reply tohalperinchen

I have been taking methadone off and on for 3 years.

halperinchen profile image
halperinchen in reply toBirdland

Thanks for your input.

BBMBRB profile image
BBMBRB

I would suggest that you talk to your GP or self refer yourself to the local IAPT service to get help with your anxiety. There are many things you can learn which could help you manage your anxiety.I also have a "bed of nails" which helps me relax.

bedofnails.org/

halperinchen profile image
halperinchen in reply toBBMBRB

Thanks BBMBRB, the "bed of nails" help you with sleep?

BBMBRB profile image
BBMBRB in reply tohalperinchen

Yes. It's uncomfortable at first but definitely helps me relax

Guitarpickin profile image
Guitarpickin in reply toBBMBRB

I got anxiety just researching the bed of nails!! Lol! I feel like anything that aggravates my nerves (like pointy pieces of plastic) would not work for me, but if sensory input didn’t aggravate my RLS, I think the bed of nails would be a very interesting thing to try. Laying in it seems like it would require focus…which supposedly good for quieting the mind. I’m so glad it works for you!!

ziggypiggy profile image
ziggypiggy

I am on year 25+ of taking Oxycontin for RLS. I still experience insomnia on most nights from taking it. It has a pick me up effect for me. But in others it can cause drowsiness. If it didn't work so well for my RLS I probably would look for something else. Another added benefit of it working so well is I can now take low doses of antidepressants that are on the naughty list that I had trouble with before. Moreover, I can also take the occasional antihistamine or antacid without to much worry.

halperinchen profile image
halperinchen in reply toziggypiggy

Thanks for your reply, are you still taking Oxycontin now? Does antidepressants and antihistamine alleviate your insomnia? I read that antihistamine aggravates RLS. What kind of antihistamine are you taking for insomnia?

ziggypiggy profile image
ziggypiggy in reply tohalperinchen

Yes. Still on oxycontin. I dont take antihistamine for insomnia. Just occasionally like when I visit my daughter who has cats that I'm allergic to.I've had luck lately in regards to insomnia. I am taking .25 mg of Rexulti (mood stabilizer) one half of the smallest dose. Makes me very sleepy. It's not good for RLS though. I wouldn't be able to take it at all if not for the Oxycontin. It has really helped with the anxiety and depression though as well . But the sleepy zombish feeling hangs on through the day sometimes. I'm just enjoying the sleep and relief from symptoms right now and see how it goes.

Unfortunately most meds that help you sleep are not good for RLS. Some have had luck with cannabis. Never works for me. Ambien has helped me sleep in the past. Been on and off that for a decade. My body just gets use to it and I gave to go off of it for several months.

Others here have switched to buprenorphine to try and avoid the sleep issues with oxycodone. My doctor and I are looking into buprenorphine but have yet to pull the trigger on that.

halperinchen profile image
halperinchen in reply toziggypiggy

Thanks ziggypiggy, I am still in the dark as what to do with my severe insomnia, Xanax and lyrics don't help at all. I learn from this forum that buprenorphine don't cause insomnia but anxiety. As long as buprenorphine don't give me insomnia, I might think to give it a go. Thanks for the valuable info.

ziggypiggy profile image
ziggypiggy in reply tohalperinchen

Let us know if you do try it and how it going. Good luck.

halperinchen profile image
halperinchen in reply toziggypiggy

I did a little research on buprenorphine a little while ago and found out that one of the side effects was also insomnia. so I don't know what to do. Joolsg seems doing wonderful with it and she is able sleep 8 hours every night. I don't know what opioid I can switch to to avoid insomnia, It seems that all opioid can cause insomnia. Thanks for your reply.

ziggypiggy profile image
ziggypiggy in reply tohalperinchen

I try to scour pain management forums and clinic websites because these providers and patients are using opioids long term like many of us do here as well. I've come across a couple of mentions where clinic providers have switched patients over to oxymorphone at night instead of oxycodone because it's supposed to be more sedating. I can't find any further research or studies comparing the different opioids when it comes to insomnia. Just these anecdotal cases . I've mentioned oxymorphone and buprenorphine to my doctor but he kind of shrugged it off as he hasn't experienced any of his patients dealing with oxycodone induced insomnia like me. He did say he would do some searching. It's a fine line when making suggestions about opioids with your doctor. Even the great relationship I have with mine, he is always wary when I suggest a change out of nowhere. I find that i have to slowly keep mentioning possible changes and adjustments without coming off as desperate.

My opioid medication is what allows me to live a somewhat functional life. Our doctors are the gatekeepers to that lifeline. With the negative sentiment surrounding prescribing and using opioids, I'm wary to rock the boat.

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