Morning everyone, another sleepless night. Where do we go from here? Now taking Oxycodone - 5mg in morning, 10mg at 9pm and another 5mg about 3am as well as 1400mg Gabapentin spread over evening. Nothing working. Cannot get Buprenorphine in our area because it is on red list. Really feel like we have had enough. As a partner of a sufferer it kills me to see what he is going through and being unable to help. Just about had enough now!! Tried CBD drops, they made him ill. You guys all keep me going with your suggestions, but like you say every sufferer is different and not all drugs work for everyone. Why don’t GP (in UK) understand you need sleep!!!
Sorry to rant, bad times at the moment. One step forward, five back 😡😡
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Ephemera
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I'm sorry to hear the RL is not resolved and that you cannot get the one medication that works. That's awful for you . It's truly torturous. I live in New Zealand so am not familiar with UK laws on medical cannabis. I have taken CBD oil and it made me feel sick too so only took it for a week. BUT the THC component works really well. I can get a good restful sleep without RL for about 3 weeks on cannabis edibles that I make myself. They taste great too. Then tolerance develops so I take a weeks break and repeat. If You can get gummies or other edibles from a reputable source then that may give relief. It is pleasant and soothing and I feel fine taking it, unlike the drugs with unpleasant side effects. I've recently started codeine 30mg which is working but with side effects. I intend to alternate between the cannabis and codeine somehow. I do hope you can find a way to get the Buprenorphine though, or someone more knowledgeable may have some ideas that may help. Thinking of you and sending support!
Clearly, the only way you will get the one drug that has helped your husband is to have a neurologist prescribe it. Your NHS neurologist refuses, presumably because he was annoyed you saw another neurologist privately.Can you keep a diary, take a video and send to your GP and the NHS neurologist and explain that Buprenorphine helped but oxycodone and gabapentin aren't helping?
Copy in your MP and explain that Buprenorphine DID help and is available elsewhere in the UK.
The only other option is to move house to an area where Buprenorphine is not on a red list OR keep seeing the private neurologist and ask him to 'supervise' the prescription if your GP issues it.
It is SO disgraceful and disgusting that your husband has been treated so negligently.
Can you consult solicitors who specialise in medical negligence? Your husband's misdiagnosis and months on very high dose dopaminergic drugs caused this and now the NHS is abandoning him.
we have been trying to get hold of Dr Dhanjal who we saw in London. They have not answered any emails or returned any calls. We have given videos and diaries to GP and both neurologists but to avail. Have contacted local MP who just said he would look at it. It seems we are not alone with being abandoned by NHS in the UK, unbelievable that patient care comes second to cost of drugs.
I'm so sorry this is happening. It's a total disaster. It is essential that we get trials of Buprenorphine and then, if it's licensed for RLS, GPs will be able to prescribe it.
have you thought of switching from gabapentin to pregabalin? They really do work for me. I struggled for years with RLS and o thing worked till I went on Pregabalin. Now I am enjoying a full nights sleep which was unheard of and really dragging me down, as well,as being able to sit still and watch TV in the evening.
I live in Plymouth and I contacted Dr Robin Fackrell in Bath privately. He wrote to my GP and suggested Buprenorphine. I was prescribed the drug. Unfortunately it didn't agree with me. I take oxytocin now with good results.
hi I’m in exactly the same situation as you gps don’t seem to understand the magnitude of the problem or don’t want to mine just dole out to sleeping tablets
The oxycodone protocol I follow is 5 mg at 7 PM, 5 mg at 9pm and another 5mg at 9:30. That gets me through the night mostly. That’s how Johns Hopkins believes it should be done. I don’t have any symptoms during the day BTW.
I agree with “Rayme’s” suggestion to try taking THC alone. I take a 25mg. Delta 8 THC gummy ( with no CBD) about 60-90 minutes before planned bedtime along with my bedtime Oxycodone and it definitely improved my sleep. I wish you well.
Hi. I am so sorry that you are dealing with all of this. I am not sure if I have RLS, but I do have horrible cramping and tingling in my legs at night. I read about these problems all of the time in scholarly articles on line etc. And both kinds of cramps are similar anyway. One thing I am sure you know is that replenishing your iron supplies helps maybe 70% of RLS sufferers. So I have been trying to get more iron into my system. Somewhere I read that even if your iron blood panel is good, it does not tell you if you have enough iron in your brain, which is where it needs to be for RLS. So you could try to get more iron into your system. I found this neat little thing called the LUCKY IRON FISH. Google it. It is legit and has been studied and is being used in nations where many people have anemia. You just boil it for 10 minutes with three drops of vinegar, let it cool and drink the water all day. Or put it in smoothies etc.
Everyone is so different and responds to such a variety of methods. I do hope you find a way to help your partner. It must be agonizing to have to watch and not be able to help. Hang in there and maybe you will find a solution here on this wonderful site.
Ephemera,Hi can you describe the restless legs symptoms, the reason I ask is because I was diagnosed with restless legs in 2013 and was only offered a choice of three types of medication, 1 Amitriptyline ( bad side effects ) 2 Clonazepam two at night 500Microgram, and a third imedication( don't recall the brand ) which according to the specialists can cause complusive gambling, in the end I settled for Clonazepam and have been taking them since 2013, they just keep me asleep all night, the problem is I dont believe I have restless legs and I think I was misdiagnosed, mine at the time was a cold numb feeling just in the feet, which I kept moving just to get some relieve, its now in both legs and arms/ hands and its more of a non stop burning sensation and because I had a heart attack in 2018, my doctor says he can't give me anything else, im happy with the Clonazepam, at least I'm getting my sleep, its just the days I can't stand.
Tightening in legs, random either leg. Tourniquet feeling in thigh. Having to get up and walk around to get rid of it. Soon as I lie down it starts again. Tried Ropinerole and Clonazepam, both made it worse. Most nights no sleep, sometimes a couple of hours. No burning sensation. Not a problem in the day, just at night. Hope you find help.
sorry to hear this, I feel for you I really do, it seems we have very different conditions, there's no way mine is restless legs, I also hope you to find some help and thank you for taking the time out to reply to me I appreciate it and take care.
All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition. Do you meet these conditions? If so, post here and we can give you some advice.
All I can say is, I was diagnosed in 2013 by neurologist after he ran several tests including electrical tests on the feet low voltage and a bit like a tens machine at the hospital, l also made it quite clear I didn't feel the need to move the legs, I only did and continue to do so today because it brings temporary relief from buring but he still said it was RLS. I believe I have peripheral neuropathy and Ithink it's to do with my ankylosing spondylitis which I've had since 2008, I'm also thinking trying some Lion’s Mane which is reported to be able to help with nerve pain and in some cases it help repair the nerves. Thanks for replying Sue, take care.
Have you tried to cut out caffeine, salt (sodium), and sugar products? I even had to cut out pain killers such as ibuprophen or naproxin because of the sodium content. I also use muscle rubs to combat the RLS. It helps some. I take 2 magnesium 10mg tablets every night. Sometimes twice a night. I just saying that there are alot of triggers out there especially in the things we eat or take medicinally. Hope this helps.
Are you sure 10mg of Magnesium is accurate? I take 300mg which helps. Some recommend as much as 600 a day but that can cause diorrhea. I find M.Citrate best, taken with Vit B6, P-5-P which apparently aids absorption. Until I discovered Kratom on here a few weeks ago my only relief apart from Mag was Restiffic foot wraps which I find work in around 2 to 2 1/2 hours when RLS strikes in late evening when trying to relax. Problem there is that if only one leg starts kicking at a time which it usually does, the other one often starts after being in bed for an hour or two and the only solution is to get my wife to put the other one on. That, sadly means 5 hours lost sleep at night. They only work in the sitting position for me, not in bed as some recommend. Why did they stop selling them in UK, Only now available in USA and $199 a pair. Mine are nearly worn out after 5 years use as the velcro fasteners eventually break. They were invented by a doctor and the US site gives helpful and, to my mind, genuine videos of satisfied users, including the inventor on their blog. The FDA has apparently approved them but apparently only on prescription and you live in US. Hope this helps many who are struggling as RLS is like torture and yet not properly recognised here in UK and no research or available specialists.
I’m so sorry you’re going through such a difficult time with RLS medication. I have only taken Oxycodone for post surgical pain for a short while. I never responded well to Gabapentin. I finally found relief when the RLS Doctor associated with this website suggested I try transitioning from Gabapentin to pregabalin, and combine that with Tramadol, a mild opioid with less danger it will cause addiction. I’ve been on it for several years and I have hardly any restless leg symptoms. I take 100 mg of tramadol 3x/day. And I take 100 Mgs. Of pregabalin 3x/day. I take both at the same time: 8 AM, 3 PM, and 10 PM. If I do get a little break through RLS at night I use magnalife Relaxing Leg cream applied liberally all over the restless leg or both, sometimes just as a preventative before I go to sleep.
Oxycodone is dangerous to be on. It is highly addictive. Jools is right you need to find a good, well recommended neurologist who will be more knowledgeable than an internist or a primary care doctor to prescribe the right medication. Or you might try to find a doctor who is a pain medicine and a pain management specialist.
The most effective treatment surely is Kratom. Natural and very few adverse effects. Been getting some sessions of sleep 4, 3 or 2 hours with gaps each night for about 17 nights. Get it from Kraatje.eu and do not be put off by talk of banning it here and in parts of USA. That is just the Big Ph---- tyrants trying to kill the natural remedy sector! See my other emails.
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