In February this year I went to Guys Hospital Sleep Clinic for an overnight Sleep Study. My experience was that I didn't sleep all night. I know this because I heard the entirity of my audiobook, every word! I knew the story and I know when I miss parts of an audio book out overnight. I was aware of shuffling about (wriggling my legs) in order to sooth myself off to sleep. I was awake when I was making the leg movements.
The results came back that I was asleep for 90 minutes. During this time I displayed very severe PLMD. The consultant recommended a range of strong drugs to treat it. My GP has so far been very unhappy to prescribe any of them, given my own reported experience of the sleep study and the fact that my husband has often been awake in the night and reports I am quiet as a mouse and very very still. He has never seen evidence of it in 34 years of sharing a bed with me.
My questions are:
Surely hubby would have seen something?
Is a 90 minute sleep cycle enough to diagnose?
Should I take these strong meds, given my doubts about the diagnosis?
I currently sleep for 8 hours one night and 4 for the next couple, then back to 8. It's very erratic but very efficient according to my Apple Watch. I have completed CBTi with no effects at all (it made me very ill and the Guy's Hospital consultant said is was the very worst thing I could have done). My sleep hygiene is very very good indeed.
I am 61 years old and a Fitness Instructor and Yoga Teacher with an extremely active lifestyle.
Is there anything else I can do to help myself?
Thank you in anticipation for your help.
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YoginiDancer
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Welcome to the forum. You will find lots of help, support and understanding here.
I would be inclined to believe the sleep study.
PLMD is treated the same way as RLS. So wherever I say RLS in the following, just substitute PLMD.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.
When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.
When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20% and 45%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.
Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...
Ferritin was 167. All other results smack bang in the middle of normal range. I'm really fit and healthy except for my awful sleep! It was the first I had ever heard of RLS or PLMD when the consultant reported the results. I had to look it up and came on here to try to understand why I had not presented with any symptoms apart from poor sleep.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
I see some things in your profile that may make RLS worse.
Bisoprolol is a beta blocker and can make PLMD worse.
Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....
Ovestin & Tibolone are HRTs and as I mentioned above makes RLS/PLMD worse for most.
I eat a really healthy diet. No sugar, alcohol, carb free more or less and caffeine only before 12 midday (so very little).
The only things on your list are craving for salt which the sport dietician said was because of all the sports I do and recommended I took some salt in the diet. Sodium is currently 141 (within normal limits) so I guess I'm not overdoing it? If I don't eat enough salt I get lots of leg cramp at night. Is cramp connected to RLS?
I also sometimes eat late as I monitor my kcal intake very strictly to maintain a healthy BMI (fitness industry standards and all that jazz) so I'm sometimes very hungry in the evening. I could look at that and get the calories in earlier in the day. Ironically I sleep much worse if I don't eat before bed as I wake up hungry (I do around 3,000kcal of exercise and only eat 1,500kcal per day so you can see why but I'm hypothyroid so I have to be very light on kcal to maintain the right weight.
Unfortunately I can't come off the small dose of Bisoprolol as it's for my heart condition (Left Bundle Branch Block) and my life without HRT is just not worth living ( I was born without ovaries so I'm extremely low in oestrogen, even with the replacement hormones) so I guess the PLMD, if I have it, will have to be the lesser of the two evils!
My own sleep theories are that the lack of osetrogen in my body intefers with the Melatonin production and dosing with it might be worth a go but you are saying that can cause RLS so maybe not....
Thank you for all the advice, it's really really useful. Especially as I spoke to the consultant in November last year and the follow up isn't till August so I'm on my own with it all (apart from you lovely guys) xxx
A bit of a side issue but my wife had really bad leg cramps for which she took Staminade at the first indication of a cramp. We weren't very happy about that because she is diabetic. After some experimenting she now takes 2 x 500 tabs of Magnesium Biglycinide before bed and has had about 3 cramps this year. As far as I can tell there seems to be no side effects of magnesium and its probably better than salt or sugar.
It might be a good idea to check with a doctor if you have a regular but we spoke to several who tut-tutted and said there wasn't much they could do.
Sue has given you good advice about how to treat PMLD and/or RLS. From your story, it seems that you experienced (mild) RLS most of the night. And only PLMD during the 90min sleep. For the non-sleep part, did you have the urge to move? It sounds like it, The urge to move is the most crucial part of an RLS diagnosis.
However, you don’t mention crawly feelings and urge to move for your other nights. Do you experience that normally?
If you do have RLS and/or PMLD, it may be wise not to teach /do fitness or yoga in the evening. Movement is good for RLS, but counterindicated when too late in the day.
Have a look at the Mayo Clinic updated guidelines for the treatment of RLS:
No symptoms of creepy crawlies and no urge to move my legs in any other circumstances at all - it was just a strange bed and I was covered in wires so I was trying to get comfy! I generally teach in the daytiime (one class a week finishes at 6pm), however I will make sure I don't accept any freelance work in the evening on your advice from now on.
Assuming the study was correct, and I was a sleep and was moving my legs, do you think 90 minutes is long enough to use as evidence for going on the strong drugs?
Do not take ropinirole no matter what! Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work nor might iron. And one expert believes everyone will eventually suffer augmentation.
I guess it would be up to you if you feel the PLMD is bothering you enough to discuss taking gabapentin or pregabalin with your cardiologist.
So good to know this information. I haven't seen a cardiologist for 20 years! I have no symptoms from LBBB and don't know I've got it (I'm super fit for my age). It seems like this might be the less risky approach. I had hoped from something much milder like Melatonin which we can't get in the UK over the counter.
Just wondering… why did you to the hospital for a sleep study? Because of the every other night of 4h sleep? And because that slowly but securely wears you out?
Or any other reasons?
I would be hesitant about starting medicines for the PLMD based on this sleep study. Better make sure you follow the RLS guidelines for iron, provided that is safe for you.
Remember, we are not your doctor and have far from all the information. We can only share our experiences and help you think of options to discuss with your doctor.
I was having around 4 - 6 hours every night prior to the study and of course resultant daytime sleepiness. This got worse after I followed the GP's advice to pay for a very expensive 6 months of sleep training (CBTi). I think out of guilt, the GP funded my referral to the Guy's Hospital upon recommendation from the head of the CBTi training, herself an NHS sleep specialist who though my problems were due to a disorder, not a behavioural issue, especially since I had followed her advice to the letter and got worse!
The Guy's Hospital consultant agreed it had been the worst possible advice to send me for CBTi and ordered the sleep study as my daytime sleep was very bad by then due to the sleep deprivation building up so much. It was becoming dangerous to drive etc etc. People with behavioural causes of insomnia don't actually sleep in the day, they are just tired wheras I could actully sleep standing up I was that exhausted!
Since the study in Feb I have been terrified of being put on the drugs as I looked up the side effects (I didn't know about this forum then) and they seemed so frightening. I think it made me so determined to try to sleep myself that I was neurotic about sleep hygeine etc and put things in place the opposite of what I had been advised on the CBTi training so that now I can occassionally have a much longer night's sleep - but not consistently. Sadly I'm still exhausted in the daytime. I don't drive in the afternoon as a result. Now I'm not on any treatment and still stuck with the problem of insomnia as I don't have any support from the clinic till August. GP won't prescribe as instructed because I'm so wary of the drugs and he feels the clinic should be dealing with it, not him...
Thank you so much for listening. It's so kind of you to ask the right questions.
Thanks for sharing your story. The daytime exhaustion is difficult. I guess you’re managing by just pushing on?
Your issue seems to be finding out what causes the bad sleep and -hence- daytime exhaustion. Is it insomnia, i.e. you can’t fall asleep or stay asleep and lay awake long periods in the night? Several people in this forum are familiar with insomnia independently of RLS.
Or is it indeed PMLD. Is there a way you can film yourself at least several hours during the night?
I noticed your reply to Sue about your (inactive?) LBBB. If you do want to do something medicine-wise, you may already have learnt that the first step is iron together with checking any current medicines including otc ones. People with RLS usually respond badly to melatonin. Melatonin is really only indicated temporarily if you sleep well but fall asleep far to late (thus when you sleep timing has shifted). That doesn’t seem your problem from what you wrote.
Have you ever tried a normal sleeping aid, like a benzodiazepine? If you don’t have RLS, it may help. They shouldn’t been taken long term, but a short course of 1 week to test effectiveness may help to get over the worst of the exhaustion. The quality of sleep on sleeping pills is less good, however.
Together with the other replies: lots to think about. I hope you get to sleep better soon. Chronic exhaustion is no fun, I know from experience.
hello YoginDancer - I also have plmd and rls but have not slept for more than 3 hours at a time for four years - despite being on a load of horrendous drugs - so I would say if you are managing 8 hours at all avoid the drugs and try to manage your bad days by sleeping in the day. I know this sounds very negative but my experience has been the more I’ve tried to manage my symptoms with drugs the worse they’ve become and definitely DONT go on dopamine agonists - that would send you down a very negative path. If you were going to try anything I would say a low dose of pregabalin - however it does make you very tired and lethargic. Good luck
This was EXACTLY my intuition. I don't want to mess around with drugs if I can help it. I chose to be in the fitness industry where I am needed during my high energy times and in the end now think I might just be better taking a two sleep approach which is what I have done for the last 40 years...
I'm surprised they did not give you something to help you sleep during the sleep test. I took an Ambien before my sleep study or i would have slept like you did maybe 90 minutes. The medicine gave them at least 6 hours of sleep to evaluate. Showing consistent PLMs throughout. When dealing with PLMD the amount of sleep you get will not necessarily correlate to more daytime wakefulness. The movements in your sleep will keep you from entering restorative sleep phases. The movements don't have to be dramatic nor will they wake you up (would be suprised if a sleep app detector like an Apple watch would even register them)
Untreated moderate to severe PLMD will leave you groggy the next day no matter how many hours of sleep you get.
I have always been told ahead of a sleep study to continue to take the medications that i usually take and to not do anything different for the sleep study. I've had 5 sleep studies and my son has also had 5, with different providers and at different locations. So it's interesting for me to hear that you were able to take an Ambien.
It's also interesting that you experience grogginess with PLMD. I have never experienced any grogginess the day after from PLMD itself, only ever from medication. (Unmedicated,) PLMD leaves me feeling the classic "wired but tired" the next day.
Hi Yogini Dancer, I'm including your original question with my answer.
Q. Surely hubby would have seen something?
No, none of my bed partners ever noticed/commented on my severe periodic limb movements at night over the course of decades.
Q. Is a 90 minute sleep cycle enough to diagnose?
It's enough to identify the existence of limb movements but that's about all.
A comprehensive sleep study gives a picture of things like, time taken to fall asleep, amount of time asleep, time in each sleep stage, sleeping heart rate, oxygen saturation, as well as identifying any problems eg restless legs, periodic limb movement disorder, sleep apnea etc.
When i was having a sleep study (one of several) the technician told me that they needed a minimum of 3 hours sleep in order to get the data they need. I have read elsewhere that ideally you'd have 6 hours.
Q. Should I take these strong meds, given my doubts about the diagnosis?
Given you had an elevated number of limb movements , and you're tired during the day, it's likely you have periodic limb movement disorder.
Before my initial sleep study some years ago, my sleep specialist gave me an actigraph to wear for 14 days. That showed that there was an abnormal amount of movement happening while i was asleep (that i had no knowledge of). And that was the basis upon which he referred me for a sleep study.
Personally, i wouldn't rely on a fitbit/ applewatch or the like. They aren't sensitive enough to pick up what's actually going on for people like us.
I don't blame you for not wanting to take medication. However, remember the dose makes the poison!
A couple of things you could try that are possible more benign than some of the usual meds are clonidine - that helps with sleep onset, or dipyridamole, that calms my legs somewhat.
Failing that and despite what any official guidelines say, i would recommend low dose opoids.
(Edited to add: i don't know anything about your other condition so these suggestions are only made in the context of RLS/PLMD and you'd need to get advice from your GP/specialist)
I have used pramipexole and pregabalin and while both helped my limb movements the side effects/long term effects mean that i can't recommend them in good faith (unless there are absolutely no other options).
Q. I am 61 years old and a Fitness Instructor and Yoga Teacher with an extremely active lifestyle. Is there anything else I can do to help myself?
Vigorous exercise definitely worsens the condition. I only exercise before 11am, apart from walking which i can do at any point. I still recall the absolutely terrible sleeps i used to have after doing an evening Ashtanga yoga class and this was two decades ago...it took me a good few years to realise it was the intensive exercise that was the cause.
Eating your last meal 3 to 4 hours before retiring is another worthwhile aim.
Some other things that i thought of if you want to try supplements before prescription meds. I have started taking GABA supplement in the evening and it is helping with sleep. I gave it to my son on the advice of his gastroenterologist and to my surprise, i noticed it helping him sleep deeper (he also has PLMD). So i started taking it myself and think it helps somewhat (i also take medication).
Some people have had success with St John's wort.
And not a supplement but a prescription med, some people have had success with Low Dose Naltrexone (LDN). Conversely it hasn't worked for others. I have tried it but can't really comment on whether it helped with my PLMD as i was taking a full dose of pregabalin at the time. I find it improved my energy levels but had to take it in the morning as it caused insomnia otherwise.
Thank you for you extensive reply. I had no idea I might have this condition without anyone, including me, feeling anything! Very good to know this information. The sleep clinic also had me on an Acti-watch thingy for 2 weeks after the sleep study and I also had no idea that the PLMS could be picked up on that either - they haven't told me anything at all. The test was in Feb, the follow up in August which seems a long time to wait for any kind of explanation. Thank goodness for you guys and what I can now be armed with in August as a list of questions to ask.
I have PLMD and have found NO SALT in the evening meal--even milk products (and the lowest possible amount earlier in the day) and no eating after 6pm makes a difference. I used to eat nonstop in the evening and this was a hard habit to break. I also need some salt to avoid leg cramps but think my PLMD would be even better if I had none at all. I can eat during the night usually without bad effects.
Hmmm very good to know. Do you exercise a lot (I am a Fitness Instructor so I exercise much more than most) and if so, how do you manage without putting the salts back in to your system? Do you know why salt casues PLMD to be worse?
I exercise a lot but I am not sure how much salt I lose. I do try and account for that in my salt intake. We are all different on these food issues so you'll just have to experiment. I have found many tasty flavorings cause issues. I heard a joke from a comedian about old age diets: "if it tastes good, spit it out" which kind of describes my diet...except I can do unsalted spicy Indian. Salt may not be an issue for you. Not much is really known about PLMD if you read the internet. But I don't recommend doing that reading. Have fun instead.
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