I’ve written many times on this site and I apologise for my continuing moaning but I’m getting desperate with my restless legs..
Last night I didn’t sleep at all and at 4am. sat on the edge of my bed and with head in hands cried with frustration. At the moment I’ve been taking pramipexole 0.088 mg and codeine 75 mg twice. Nothing works and I’ve been resorting to zopiclone to try to get some sleep and even that seems to stop working!
I’ve heard bad reports f long term use of zopiclone and want to stop but ass anyone of you who have suffered severe rls know it’s not easy at 4am and desperate for sleep.
Trying to get an appointment with a GP is almost impossible and even then it’s only a telephone consultation never face to face anymore. Ne can tell with the tone of a GP is the. Indifference, lack of knowledge and anything to got you off The line!
I have an appointment with a neurologist ( telephone) but not or 6 weeks and I don’t feel as though I could wait that long without sleep!
I have read a report that melatonin is available on a 3 month trial does anyone know if this is correct
I appreciate in advance any advice
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Hoochybaby
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Hello again. It's true that you've posted here many a time and always it seems, with an issue. Or the same issue again.
This is really not a problem, if you find it helpful to even share your frustration and despair then it's good. This site isn't just about finding solutions.
I'm really sad to hear of your struggling again. I really don't like to see people suffering,
I'm not sure I can say anything to help other than I can understand your feeling and sympathasise with it.
Many thanks for your reply always good to hear from youMy question was raised because I read an article in the Saga magazine by the resident doctor Mark Porter in which he addressed the condition of insomnia and that a 3 month trial of Melatonin was available on the nhs
The fact that I am suffocating badly with this issue was a glimmer of hope for me if I can obtain it from my G P
Yes by all means try it. Just not too high a dose.
I'm sure Mark Porter is probably right in that a it can help with insomnia, but it will be out of context. There are a few things that help with general insomnia, but insomnia due to RLS is a specific case.
We often read these glimmers of hope it seems in relation to RLS, but often lead to disappointment.
Do give it a try if you can.
You can also try stimulating your own natural melatonin. Make sure you get some hours exposure to natural full spectrum light during the day and avoiding full spectrum light at night. Dim house lighting, no TV 2 hours before bedtime, avoid using PC lapstop, smartphone etc, all backlit screens with full spectrum displays.
Later, I'm sorry if that was a bit abrupt. It was late.
Something a bit more practical. I tried Zopiclone once and some years before that clonazepam. I found neither them of much use. They are also reknowned for being addictive. I was only allowed a limited amount.
Melatonin may help in smaller amounts but if too much is taken then it can make RLS worse by depleting dopamine.
I hope the neurologist is really helpful, they can be.
I'm fairly sure you need to get off the pramipexole although I understand the predicament that when you try to do this, withdrawal effects are a real deterrent and thoughts of how you'll be without it.
I don't mean to be dismissive of your suffering nor trivialise the effects of insomnia, but for myself I found it easier to cope with when I changed the way I thought about it. Lucky for me I was retired. It's easy to build bad patterns in how we perceive and interpret things and difficult to change our perceptions but our feelings about things are shaped by the way we interpret them, not hy the thing itself.
As illustration I read once about an experiment in which two groups of people were given identical injections of adrenaline, stress hormone. One group were asked to do one thing, I can't remember what, the other group asked to sit in a dentist's waiting room. The first group said they were "excited", the second they were "anxious".
I shudder when I see people in theme parks disappearing at high speed vertically into a hole in the ground called, "oblivion". They think it's fun. A matter of perception.
I hope this makes sense, the point is, it's easy to find lots of reasons for being negative about something, especially when it is horrible. but if you can find some positives in it or at least distract yourself, then it may not seem so horrible.
Thanks manerva for your thoughts on my insomnia and rlsAs you will probably be awake over the years I’ve tried most meds and strategies but I would like to know what you currently take in the way of meds and other strategies you use to cope.
Do you manage your rls and sleep successfully? Or maybe you’ve built up a better tolerance level than I have?
Some days I can cope ok on little sleep but others like last night for instance I got no sleep whatsoever and today felt dreadful I found it perplexing because the previous day I managed quite well on little sleep and there was nothing out of the ordinary going on in my life to make a difference
The severity of my rls varies dramatically from day to day and no one nighT is the same that effects my sleep or tolerance to this disease
I admit to being a bit of a fake really. At one time I had really severe RLS which was a nightmare for ten years or so. I had augmentation for at least 4 of them. I was taking pramipexole. Then I learned about augmentation, weaned off the pramipexole and started gabapentin. I've been on 600mg for 3 years now.
Fake because I can't say I have a problem with RLS. The symptoms affect me very little.
I do take a multitude of supplements, for other reasons.
Hi, I empathise with your insomnia. I go four or five days without sleep, even when I do sleep I’m wide awake at 3 am not four am. I call it the witching hour. I don’t know why! I’m from an Irish family and use lots of odd phrases handed down from past generations! Lol.
Always keep coming back. It not only means your still working at it and not giving up but you bring benefit to newbies and a purpose to those who reply. Its a two way street my friend.
I have tried many sleeping tablets over the years and none help but like you say at 4am you will try anything just for a few hours sleep. In my experience the body becomes used to them within weeks and they stop working. However, if you can train yourself to just take them every couple of weeks or so they can help knock you back into a sleep pattern. It’s advisable to not keep a stock of them they are addictive and dangerous. That four am feeling can lead to taking more than prescribed amount in sleep deprivation state of mind.
I have taken melatonin easy gummy bears from the States. They didn’t help. It is found naturally in gold top milk as it is a hormone produced by cows to help calves sleep. I believe it is available on NHS but good luck finding a GP who will prescribe it, they will happily prescribe packets of chemical sleeping tablets! Cash is king?
As Manerva already stated. The only think to have helped me is a change in attitude towards not sleeping. I do not work any more or drive due to a number of chronic illnesses. So I don’t have an 8am start to add to my worries. When awake, I will potter around a bit doing small, household chores, read a book, visit a site to touch base with fellow suffers or have a hot chocolate! I may not fully sleep but it frees my mind a bit and I will catnap even if I think I haven’t lol.
You’ve heard it before but sleep hygiene is a help not a solution ca. Dark room, best mattress you can afford, lots of pillows including ones to stuff between your ankles and knees. No affine after six, non at all if you can. Stop tv and computer a few hours before bed. Routine is essential I believe. Always go to bed the same day you got up! Before midnight! Lol rise at same time having slept or not even if it’s just to a sofa. For me two hour lunchtime catnaps work if they will come.
Try not to stress, short to do lists or a gratitude list really work for me if not sleeping. I’m not sure there is a chemical answer so look to a behavioural or attitude change to help.
Legs killing me this morning so deep heat, pain relief and rest. Focus on what ‘has’ to be done today ( a diabetic eye screening at hospital) and not the things my head tells me I ‘ need to do’. Be kind and patient with yourself.
One last thing! I have read in several places that in medieval times it was common practice to have a ‘double sleep’ getting up in the middle of night to see to chores or prepare breakfast, chat or ‘interact’ with significant other then back to sleep again. Maybe this straight eight hour sleep thing is a product of work patterns brought about by work practises of the industrial revolution and electricity and not a natural order of sleep at all? Another of those Irish sayings though maybe not the healthiest! - I will eat when I’m hungry, sleep when I’m tired, drink when I’m thirsty and if Whsky don’t kill me I’ll live til I die! Lol
If this lot of rambling doesn’t help you sleeep.....lol
I read in Matthew Walker's excellent book on sleep (Why We Sleep) that he doesn't think the double sleep habit was a natural one, and more a social/cultural thing. Having said that, it's a way of life for me now and I get a few things done that didn't happen in the day and it probably doesn't hurt as long you get one or two decent sleep cycles in over the night period. Also nice to wake up to a house with the chores done.
Thanks for that munroist, always wondered about it wether it was to keep fires going or old wives tale. For me I know it’s better to get up and potter if no chance of nodding off rather than lying there over thinking things. And as you say have a head start for the next day. Lol
Thanks pagan707Your Irish story brought a smile to my face a rare event nowadays
Rls is such a complex illness and effects people in Different ways
At the moment I’m looking at opioids rather da’s I’m still taking 0.088mg Pramipexole but I believe this is the smallest dosage available I could be wrong but until I get to speak to my neurologist again I will keep at it and ask her advice at the time wether to change again but I do want to keep off zopiclone if at all possible but as we discussed before at 4am desperate for sleep it’s easy to give in we are human after all
On a brighter note I had a Irish work colleague many years ago from Dublin who was the funniest man I’ve had the privilege to meet and I’ve never laughed so much in my life it was so easy to forget about all the trials of life in his company
My pleasure and thanks for yours. I think your wise to stay away from sleeping tablets as great to start then augmentation kicks in so fast it’s not worth it. I went down the opioids route and it’s helped but bumpy ride. Tramadol first then morphine but this is not just RLS I have fybromygelia, chronic fatigue, peripheral neuropathy and spinal problems that it was prescribed initially for but helped RLS.
I have tried and still use a product by Natrol - 3mg timed release Melatonin with Vitamin B6. It can appear useless if I eat the wrong foods prior to bedtime. Mostly insomnia is a battle between Glutamate (excitable) over GABA (relaxing).
Hi Hoochybaby. My heart goes out to you. I get cranky without 8 hours of sleep ONCE, so moan and grumble. I would. Just a few things to add. Mild exercise before bed (tire yourself a bit. My wife takes codeine and paracetamol regularly, so paracetamol (with chemist's guidance) before bed, may be an option. I find paracetamol knocks me out after a fraught day.
Just reading this string and I can empathize, to a certain degree, with the RLS-related insomnia. I do wish I could find your other posts as you’ve gone through a process, it appears, of eliminating other therapeutics.My experiences are going to sound absolutely ridiculous but they worked for me. Under no circumstances would it be medical advice but it seems, without reading your history, that simplicity might be a partial solution.
I always associated any bouts of insomnia were a direct result of RLS....all pain, no sleep since the RLS only occured at night.
The RLS I was able to “completely eliminate” by consuming a tablespoon of yellow mustard as soon as the RLS reared its ugly head. Then I moved into electrolyte supplementation powders, mixed with water, and have never experienced another RLS episode (been about 4 years now).
The insomnia was a different story as I too went down both the ambien and Melatonin paths. They did not solve my problems in the least. One night about 3 years ago I picked up a bottle of Unisom 50mg gelcaps (diphenhydramine). I take one every night and I have not had a sleepless night since starting them.
Yeah, I know, seems too simple and elementary to be effective but again, they work for me.
Hi I have had RLS for years climbing the walls walking outside getting up at night terreby I was on pramipexole for a long time no good then had. to come off slowly then I went back to the doctor's then she asked me if I would like to see a neurologist so I did she checked me all over then she told me to stop taking the pramipexole was no good then she put me on pregabalin 75 mg 1to be taken at 6 pm and 1 to be taken at 9 pm with 2 codeine phosphate very good and I have a good night's sleep the best thing what happened all the best take care😣 please let me know how you get on Henshaw 241241
Hi thanks for your reply I too was on Pramipexole for years and I had to keep upping the dosage for any improvement to my rls coming off the drugs was hell
I then went on to pregabalin and codeine like you but after a period of time that too was ineffective
My gp this morning told me that he was not allowed to prescribe melatonin because it’s a controlled drug but he is writing to my neurologist to see if she can prescribe the drug
Once the consult agrees it’s just a formality to give gap permission and it goes ahead. My last change was from morphine to brunorphene patches 70% stronger than the morphine GP didn’t want to took me in trend to say follow instructions of your senior specialist colleague or I’m coming in to see the head partner to talk of her salaried Drs activities. Prescribed next day lo. I’m not a pushy guy in fact a bit of a too laid back hippy. But when doctors start playing god and they and they alone know best I see red!
I'm sorry to hear you're still not getting enough sleep. Is the lack of sleep due to insomnia (mind racing, body just doesn't want to sleep) or because you're still getting disruptive RLS?I'm disappointed that your GP has you back on Pramipexole after you augmented. It's just prolonging the agony for you.
Did you discuss opioids with the GP?
I can't take Dopamine Agonists as suffered horrendous augmentation and withdrawal and pregabalin didn't touch the RLS and so my only option is opioids.
Hello HoochybabyI too am sorry to hear of your severe RLS symptoms. Also, I quite understand your sentiments around many GP's having a poor understanding of RLS and/or fail to empathize with the condition. Taking Zopiclone regularly is not a good idea as there is strong evidence to support the habit forming influences of hypnotics or benzodiazepine medications.
My knowledge of Melatonin is limited to having been prescribed the drug on a personal basis following a cycle accident last year. The aim was to help control severe pain. However, with respect to RLS, major analgesic medication have to be given in combination with recognized dopamine agonist medication.
Clearly, if you are taking a single dose of 88 mcg pramipexole and experiencing such severe symptoms, this dose is definitely not sufficient and should have been reviewed by your physician on a regular basis. The sooner you see your Neurologist the better for you.
Is it not possible to obtain a virtual consultation with the Neurologist. This would during the current world difficulties in combating Covid-19 allow you to have a speedier review and much of this review need not involve personal examination but a clinical review based on your symptoms.
Everyone who suffers severe RLS needs to be treated individually and therefore I would prefer to hold back from making recommendations on medication apart from my above comments. All I will say is that Pramipexole can be very effective if the correct dosage is prescribed, but as I have already said requires careful monitoring.
Advice from an insomniac with RLS for 25 years.Nothing has worked for me with either problem until I read in a medical dictionary what issues Gabapentin was designed to cover. I told my doctor what I had discovered and ask for a prescription. Wondering why he had not given this drug to me before. It appeared to cover everything I had discussed with him for years. No reply but I was given the prescription. Within 2 days of taking 900 mg a night I was sleeping 7 hours with no leg jerking or the spasms that had plagued me for so many years. That was 3 months ago and I feel like a new women. The thing about this medication is that it has many extensions of increased dosage, so if the current prescription no longer works you can safely receive a stronger one. I hope you read about this drug and get the relief that I have. Three months may not be time to consider this a fix but it has been a glorious vacation from what seems like an eternity.
Hi thanks for the reply I was on pregabalin for quite a lot time and at first that to worked ok but again I had to keep increasing the dosage to aquire the required result when I reached 300mg I started to have heart palpitations which gradually got worse
I believe pregabalin is similar to gabapentin
I’m glad it worked for you and hope it continues to do so
I have been taking 300mg per night of Gabapentin from my doctor and also put some Magnesium butter from my knees down before going to bed. If you can’t get help from your Doctor go and see a good local pharmacist as I find they know more about medications than a lot of Doctors.
Hi, I am not a medical expert but I've dealt with my RLS for 15+ years. I try to stay away from the medication but I cannot function without sleep so I have it and use it when necessary. I have found that any pain reliever such as codeine increases my RLS as would the zopiclone. I take .125mg of pramipexole if needed and if that doesn't work I take another. My prescription is actually for .25mg tablets that I break in half. This is the lowest dosage available here in the US. I understand you can take much higher doses but I've been able to - stick with these. I also have learned a few strategies - I need a good hour to relax before going to bed or I will definitely have a bad night. I have to get off the computer and CHILL. Alcohol usually has a negative affect as does the hot tub ironically. I take magesium and calcium but that doesn't seem to be much of an impact. I have started to take Red Kratom with much success. I have to take it an hour or so before bed and again at bed. This is not a cure but has provided me with much better sleep as it calms my legs and helps with my back pain. I'm all for natural remedies when I can find one that works but I keep the pramipexole at hand and will take it . Being up all night is not helpful for anyone. Best of luck!
I avoid melatonin like the plague. It was one of the first otc things I tried when my rls progressed to giving me insomnia. After taking the recomended dosage I my rls became many times worse than it have ever been moving from my legs only to my legs, back, shoulders, and arms. It left me wiggling my whole body for many hours instill it finely wore off. In the USA you can buy melatonin otc.
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