Hi Jelbea here, I don't think I know how this system works. In the past I was talking to a lot of you and got great help. I can't seem to talk with you all now - only Involuntary Dancer. I was telling her my trial with oxycodone has come to an end. 5 mg. daily was ok for the first month but then ceased to help. I did not want to increase too quickly so left it another month and last Tuesday went up to 10 mg slow release in the evening. The following day I developed the most excruciating migraine I have ever had which lasted 24 hours. I would say I hardly ever get a migraine and feel it was definitely connected to oxy. Phoned to speak to doc next day but call was given to pharmacist.
She said to discontinue oxy and went to speak to a doc on my behalf. I was told to take 5 mg. one day and nothing the next for a few days and then stop and they would see me next Friday when they would discuss lots of other great treatments for RLS!!! I said I had had most treatments and because of great sensitivity to medications I was unable to tolerate anything else in the past. I was assured there would be plenty more to offer but I am not holding my breath. I am faring not too badly coming off oxy - almost no sleep, some nausea and head zaps - but I am a very determined soul and will succeed. How are you all? Parminter, Madlegs, Jools, Jess and all you others who have responded to me in the past. If anyone can give me tips how to put up a post rather than just an answer please let me know. Never to old to learn new tricks.
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Hi Jelbea, I am so sorry the oxy seems to have stopped working dor you. And about the bad side effect of the double dose. Incidently, if I need a little more (has happened three times the past months) I break a tablet in galf and then take only about 2.5mg extra
I skimmed through tour older posts. We never touched upon other ‘causes’ of RLS that may need checking. So, do you take other meds (antidepressants, antihistamines, etc) that may cause/worsen your RLS? And most of all, have you gad a blood test for your iron kevels, oarticularly ferritin? They need to be average to high rather that just ‘within the normal range. And other blood aerum levels like b vitamins and magnesium? Especially magnesium supplements help many people, but don’t take the mg- oxide and take it at least 2h apart from the oxy.
Some research to do?? Let us know, we’re here to help.
Hi Jelbea.. I'm sorry you feel like few are talking to you. I think that even though this is a large board, people don't always have the time to answer. Or they may be on other boards. Take me for example - I used to be really active on the RA and Fibro Boards, but they have loads of people answering questions so I have backed away from them.
Also, it may be that others don't have an answer. Like, I have never used Oxycodone (allergic to Tylenol), so I really wouldn't be able to help you.. But, we are here for support nonetheless.. Hugs
Hi caaryl, why is it that your allergy to tylenol (paracetamol) makes oxycodon a no-go for you? Aren’t they completely different medicines? The oxycodon does not at ll necessarily come combined with tylenol; there is definitely a pure form. Or Targinact, which is oxycodon ( extended release) combined with naloxon to help avoid constipation. Just wondering.
My doc has indicated that oxycodone contains acetaminophen. They started doing that years ago to keep people from overdosing on the narcotic portion. We (doc and I) have found very few narcotics that do not contain it. It talks about it here generically: drugs.com/mtm/acetaminophen... Additionally, I think I do not need or want something that strong. I was on Demerol for that reason, but recently found evidence that it can accumulate in the brain and cause toxicity. So, back to Codeine and hope it is strong enough for a bad flare...
I can't find Targinact in the US, but I may just not be finding the website...
Hi, CaerylUSA, I am also in the US, so I can speak to this for our side of the pond.
Both oxycodone and hydrocodone (a milder opiate) can be obtained with or without acetaminophen. There are also extended-release versions of both. Other options you might discuss with your doctor are tramadol, which is milder than oxycodone, and methadone, which is nearly as strong as oxycodone, but is longer lasting and has milder side effects. This 2018 paper written by several RLS experts may be helpful:
Hi rls_optimist... Sorry - I didn't mean to mislead anyone. Yes, I've been taking Tramadol for several years (I have about 8 autoimmune diseases... RLs is just one of the small ones). The Demerol is for more acute pain. I am not in bad enough pain (in my opinion) to request something as strong as oxycodone or hydrocodone after I watched my 70 year old plus mother in law become hopelessly addicted to them to the point of lying, falling just to get to the ER, etc. It was very scary. And even though we disagreed on many things, she was always a really bright lady. After those, she couldn't even remember basic things, like the year or who was president..
Hello again. I was back with my GP after stopping the oxycodone and talked with her about where to go from here as all previous treatments had bad side effects because of medication sensitivity. She suggested that I drink tonic water each evening and seemed surprised when I said this was for cramp and not RLS. She also suggested amitryptiline which sent my RLS crazy after just one tablet. The only other thing she came up with was restarting codeine (which I had taken 30 mg. nightly for years and which no longer helped) but taking it only on three nights each week!!! By that stage I was so disenchanted by the interview that I just agreed, took the prescription and left. She was pleasant as I was but she obviously had no idea about RLS. The only other thing is that I have been suffering from low back pain from previous prolapsed disc and have sciatica down both legs making it very difficult for me to get around. She told me to make an appointment with one of the other GPs who might try an epidural injection of steroid. I was actually wondering if this trouble with my back could be making the RLS worse. I notice in your post that you said "back to codeine and hope it is strong enough for a bad flare". Could I ask you or anyone else who reads this how much codeine they are taking. It seems to be the only drug I can take with too much side effect. With thanks, J.
Hi J - I haven't started taking the Codeine yet.. I used to take it when I was younger for injuries, so it worked then, but I am in a much different place not.
One think I would recommend, that I LOVE is Salonpas large patches for your back pain. It has Lidocaine in it and works so well..
Tonic water and amitryptiline - I despair. The latest in the US is to ban quinine as it is so dangerous and it definitely does not help rls. And as most of us know amitryptiline makes rls much worse for most sufferers.
I am really sorry that you continue to have problems, Jelbea. I wonder would it be worth emailing Dr Buchfuhrer to see if he has any suggestions. You could also look at the webinar of Dr Early about opioids in the treatment of rls on the Johns Hopkins Hospitsl website. He goes through all the opioids. Maybe you could try a different one. It is clear from his talk that they each operate in subtle but appreciably different ways.
It’s 1.oo am and I am still wriggling round the bed so I was delighted to hear your message coming through. I will certainly try Dr Early’s report. I have emailed Dr B twice regarding oxycodone dosage but I think he did not understand I was taking slow release and suggested upping dose by 2.5 which I could not do as the lowest tablet is 5 mg and can’t be cut. I am wondering about higher dosage codeine or maybe Tramadol as I cannot function the way I am at present, and I just don’t know how to proceed. Thanks again for response and I will follow up your suggestions. Here goes again, Night night J
Hello CaerylUSA Thanks for your response. I didn't at all feel I was not being answered but I am not sure about posting something as I have really just answered posts and I'm not sure if I have it right. However, you and Lotte found me. Unfortunately I have been round the board as regards RLS treatments. I am very sensitive to medication and nothing has been tolerated so far, even though I start low and stay the course. This was just about my last chance to try and turn things around a little. I have had decades of sleeping just 3 or 4 hours nightly and never sleep more than one and a half hours at a time. I am used to this I suppose but I did hope to get a little relief. I am slowly losing my sight with macular degeneration and I need to be careful about medication.
It sounds as if you have lots wrong as well as RLS. Will think of you. J
Hi J - have you ever had a sleep study? It sounds to me like you could sure use one. If you check to blog under "My Hub" for sleep support, and search by Sleep Study, it will give you lots of information. You can have RLS, and Sleep Apnea and PLMD (Periodic Limb Movement Disorder) all at the same time.. RLS is before you sleep and PLMD is after you fall asleep.
As for posting, you did fine. I get a daily feed, but I am in so many blogs that I never really get everything, so I specifically go that blog each day, which is how Lotte and I found you. Take care, and give some thought to talking to the doc about a sleep study..? It might help you loads if there is an issue and you can get it corrected..
Thanks for all your suggestions and time. I have had two sleep studies. The first was useless as I only slept about 15 minutes all night. The second wasn’t much better but I was told I didn’t have sleep apnoea or PLMD. My wakening up so much is partly caused by year round stuffy sinuses - ok during the day but bad at night. I was given cortisone nasal spray which worked but gave me palpitations and raised my blood pressure! I shall talk to doc again at my app Friday but I’m not hopeful of help...
I was replying to your very kind response and before I had finished the reply disappeared! However I was saying does this spray have a proper name. I wonder if I could buy it in UK. I would be delighted to try it as this has plagued me all my adult life and of course with RLS I cannot take antihistamines.
You have spent so much time helping me. Many thanks
My pleasure... Try Amazon.com and just search for Colloidal Silver Nasal Spray..
Sovereign Silver Bio-Active Silver Hydrosol for Immune Support - 10 ppm, 2oz (59mL) - Vertical Spray
by Sovereign Silver
$11.99 $ 11 99
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I'm hoping this doesn't come across as a link, as that is frowned on... But it works really well. BTW - I have NO affiliation with Amazon or this company...
CaerylUSA - Your info is very good - may I just offer that RLS can happen all night, even after one falls asleep. As told to me by several docs and my research, the difference between PLMD and RLS is that PLMD involves larger, spasmodic limb (usually leg) movements. RLS may cause smaller leg movements but the reason is the accumulation, so to speak, of stimuli. I’m not sure, but I think the etiology is also a lilttle different for each one. I’ll try to check that today.
Hi Mona - Actually, I was told that RLS is while awake and PLMD is while asleep. In my sleep study, they found RLS before I finally fell asleep, but none of the PLMD. It talks about it here:
Another area of professional confusion! I’ve been told I do not have PLMD, but definitely do have RLS. Oh well, as long as we get help - so the following is only to point out a direction for anyone who wants to look further into this distinction - from a professional article I found from the WED Foundation (formerly the RLS Foundation) - “Leg movements in PLMD are typically an upwardly flexed big toe and ankle. Sometimes the hip and knee are flexed and tightened as well.” And about RLS (now best called WED for Willis-Ekbom Disease): “The feeling is usually difficult for them to articulate because it is less of a throbbing or stabbing pain and more of a nonspecific discomfort. Many who experience WED also experience generalized anxiety that results from the incessant need to change the positioning of their legs. Moving the legs, temporarily relieves the discomfort.”
Diagnosis of WED: “According to the Willis-Ekbom Disease Foundation, formerly the RLS Foundation, the following criteria are necessary for a diagnosis of for WED/RLS:
a strong urge to move your legs (sometimes arms and trunk), usually accompanied or caused by uncomfortable and unpleasant sensations in the legs
symptoms begin or become worse with rest or inactivity, such as when lying down or sitting
symptoms get better with movement, such as walking or stretching, at least as long as the activity is continued
symptoms are worse in the evening or night than during the day, or only occur in the evening or nighttime hours
symptoms are not solely accounted for by another condition (e.g., leg cramps or swelling, positional discomfort, arthritis)”
PLMD Diagnosis
A sleep partner may observe the occurrence of periodic limb movements, which often affect the partner before the patient knows of his or her behavior. In other cases, however, the diagnosis is made by a sleep technician during an overnight polysomnogram, which records sleep and the bioelectrical processes that govern it. This test is often used to assess the cause of excessive daytime sleepiness, such as PLMD and obstructive sleep apnea.”
Well, whichever one has, we all know they BOTH can cause daytime sleepiness and all the consequent health issues!
Reading your posts it’s clear that you’re very sensitive to meds.
It’s a shame that trying to increase the dose to 10 mg led to severe migraine.
When I started OxyContin ( exended release oxycodone) I developed severe panic attacks - my brother who is a doctor advised me to reduce it very slowly by 2.5mg every 4 days. I bought a pill cutter to do this and he confirmed it was alright to do this even though all advice is not to cut extended release tablets.
I was very upset because it had really helped my RLS.
OxyContin should be taken twice a day to ensure 24 hour supply in the brain and to avoid “dips” in the supply of opioids to the brain.
I emailed Dr Buchfuhrer and he suggested adding a low dose of pregabalin to stop the panic attacks and help with sleep as it’s sedating.
I would suggest you try a small dose of pregabalin- try 25 mg at night . It may prevent migraines and allow you to remain on oxycodone.
If you have no side effects from pregabalin, you could slowly increase by 25mg every 4/5 days up to 100mg. That with 5mg oxycodone may stop the RLS and avoid migraine.
I would ask you the same questions Lotte has raised. Are you taking anti depressants or anti histamines and when you got your blood results what was your serum ferritin level?
A lot of us are sensitive to meds and it’s very important to increase and reduce doses very slowly and observe the effects. It will also take longer for drugs to become effective.
Thanks for your reply Joolsg. I am sorry that I did not tolerate the oxycodone at 10 mg. I feel that if my doc had given me ordinary tablets instead of slow release I would have been able to increase to 7.5 mg. and this might well have worked. However, he would only prescribe the slow release. Thanks also for your suggestion on pregabalin. I was given gabapentin about 15 years ago as I had developed some numbness in my cheek and jaw thought to be due to nerve pressure. It was then I developed the migraine. I had never had migraine before taking gabapentin (I was about 60 at that stage). Pregabalin is, I think, a close relation and when given pregabalin I had bad side effects so I don't feel I could down that tract again.
The only other medicine I take is 75 mg. aspirin which was prescribed to keep the migraine at bay and has worked very well as they occur very rarely. My serum ferritin was 187 in June. Thanks for your suggestions. I do not know where to go from here but have an app. with GP on Friday so will see what she suggests, if anything. Its interesting to hear that many of you suffer drug sensitivities. I had to leave my previous medical practice about three years ago because I was not believed and was actually diagnosed as having generalised anxiety disorder and given SSRI. I have never had such a disorder in my life and was so annoyed by their attitude. A neurologist I went to in the past recognised the sensitivities but the GP would not accept it. Sorry to have gone on so long. Its great to hear what others try and who knows I may find my answer if I keep trying.
I totally understand your reluctance about pregabalin. It is similar to Gabapentin but with fewer side effects. I couldn’t tolerate Gabapentin but have responded well to pregabalin.
Also the dose for nerve pain is usually a lot higher than for RLS.
The serum ferritin level is good so that’s positive news.
I really hope you can find a combination of meds and a dose that helps your RLS without bad side effects. It’s often trial and error and we all react differently to the meds.
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