Had PLMD for 6 years, I'm 79 and on no PLMD medication at present. The symptoms have worsened. Has anyone with below symptoms found any successful medication please?
Kicking, and shaking in bed, restlessness, up and down all night, acting out dreams, sleeping on toilet, at basin, standing up, sitting on edge of bed resulting in falls. Hallucinations of people in bed or in the room. Daytime sleeping also sudden sleeps mid conversation. It seems that I may have narcolepsy and RBD (not diagnosed).
I would be grateful for any help or observations.
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PLMD is treated the same way as RLS. So substitute PLMD everywhere I say RLS.
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...
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, 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, 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, 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.
Thank you so much for your comprehensive reply Sue. I have had a general blood test and they said my iron level was OK.
I have an appointment with my GP in July and will ask for a Full Iron Panel noting the points you have made about the results, and also discuss Gabapentin and the procedure you suggest.
The drugs I am on at present: omeprazole 20mg, candersartan 32mg, Latanoprost drops for glaucoma, zailin ointment for dry eyes and liquifilm for dry eyes. OTC. glucossamine 1,000 mg with vitamin C, Vitamin D3 high strength.
Omeprazole is a proton pump inhibitor. RLS-UK says most proton pump Inhibitors worsen RLS and several people on the forum have said it made their RLS worse.
I would suggest gaviscon advance instead. Take it 30 minutes after eating, 4 hours before or 2 hours after taking iron Don't take antacids within 2 hours of taking gabapentin.
Candesartan also makes RLS worse for many. 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....
Please list what your medications are ,and have been over the last few years-- some medications can have a bad effect on RLS and PLMD, which can last a while ,even after giving them up.
The drugs I am on at present: omeprazole 20mg, candersartan 32mg, Latanoprost drops for glaucoma, zailin ointment for dry eyes and liquifilm for dry eyes. OTC. glucossamine 1,000 mg with vitamin C, Vitamin D3 high strength. I have also been on atenolol but stopped taking them some years ago.
Sounds like a major case of parasomnia.The first I heard of the term was when my sleep specialist showed me a video recording of a sleep study I had undertaken, and I had sat bolt upright in bed for several minutes, all while asleep. I now see my young son sleepwalking, trying to pee in cupboards is a classic! We both have PLMD.
As Jools says, a sleep study should be your first port of call.
Thank you - it's good to know that we're not the only ones with night time wandering and unexplained objects in different places in the morning! Our version is behind the bedroom door! We've read through your link which is very interesting.
I have had this problem for years and I found great success with gabapentin, gabapentin enacarbil (has worked the best for me) as have and others like Lyrica. Drugs for anxiety and depression can make symptoms much worse… The SSRI‘s and SNRIs are infamous for increasing the urge to move before and during sleep.
I would avoid the dopamine agonist like Pramipexole or Ropinirole… They are no longer recommended as first line treatment because they can worsen the problem overtime.
Lastly, it is critical to have your iron levels, checked specifically the ferritin and transferrin saturation. They must be a minimum of 75ng/mL and 45% respectively… Not just within the normal range. Most doctors don’t know this so you may need to seek out the help of a sleep specialist and not your primary care physician most cases… Can’t emphasize this enough! I hope this is helpful!
Thank you for your response. When you say this problem did you mean PLMD with sleepwalking, falling and acting out dreams as well, and that gabapentin enacarbil has helped with all of these symptoms?
We will try and get a referral to a sleep clinic as you, jools and amrob suggest.
As amrob123 correctly suspected, you have a parasomnia. It is my understanding that a parasomnia, such as sleepwalking can be the result of any significant cause of sleep fragmentation, which can be from a breathing related problem, and or a movement disorder, such as PLMD. Treating a periodic lime movement disorder may require treating both problems if they exist. If you have symptoms of leg restlessness in the early evening when just sitting around relaxing and/or getting into bed and moving your legs, relieves those symptoms, that is restless leg syndrome, and my comments about the iron levels, etc. would be appropriate but again I agree, getting with seeking out a sleep specialist to to rule out breathing disorder may also be appropriate.
Regarding the gabapentin enacarbil, do not give up on that drug because it was specifically developed for the management of BOTH Restless Legs and /PLMD. as you withdraw systematically from all dopamine agonist, and control a potential iron efficiency, you will find that other drugs like gabapentin enacarbil et al, may be extremely effective, but you won’t appreciate that until you no longer augmenting to a dopamine agonist, which is miserable.
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