My RLS is under control with dopamine agents, insofar as the sensation in my legs is concerned...but my mind is constantly active and I don't sleep deeply at all. It's not consistent, sometimes it's worse than other times. I know the drugs can cause insomnia. I don't have a problem falling asleep, usually the issue is I wake up at 3am and wide awake...or I wake up a couple of hours before my alarm with no chance of getting back to sleep...but I know I'm shattered and will spend the day like it...I mean I'm totally wrecked, can't think straight, like I've been up for 2-3 days....if I try to nap, I can't because my mind won't shut off.
Occasionally I get days where my mind feels 'normal' and I sleep really well and I can sense during the day it's not hyper active and even have a nap during the day etc but there's never a pattern I can work out (diet related etc).
Is this just the side effects of the drugs? Tried both Pramipexole and Ropinorole...currently on low dose of Pramipexole 0.88mg
Currently trying to wean myself off them completely.
The only thing that worked was Gabapentin but the side effects left me short of breath and I felt like i was suffocating slowly but it definitely improved my quality of sleep so I think it's gaba related. Tried everything natural, nothing really makes a difference.
I'd just be interested to know if this sounds familiar to anyone.
thanks!
Anthony
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silkusmaximus
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I have a similar thing - I don’t take any drugs for RLS, but the rushing thoughts exasperate RLS in my case simply because my RLS gets worse if I don’t fall asleep quickly. And it’s hard to sleep with rushing thoughts as I’m sure you’re aware!
First came up as an issue for me when I went to Cognitive Behavioural Therapy for depression a few years ago, and they were calling it rumination (good to look up that word and see if it aligns to what you’re experiencing). Came up again when I went to the doctors about it specifically when it was giving my RLS hell, and they referred me to a sleep programme, which did help a great deal, but was pretty intense.
Practising mindfulness can be really helpful at interrupting the flow of thoughts too - some great apps out there you can try for free to see if you get any use out of them (I use 10% Happier, but I’d recommend Headspace first to see if that’s something you want to check out).
With the sleep study and mindfulness training, it is so much better for me than it was - hope that you find something that helps too.
I was like that before I realised that my high carb diet was to blame. If you're getting carbs from most of your foods it will be hard to identify if any one food is a problem, but it's the cumulative effects of the carbs which leads to high blood sugar and high insulin. Insulin is the trigger that tells the cells to use up the sugar, so if your diet is high in carbs then your cells (especially nerve cells if you're lying in bed inactive) will be working hard and keeping you awake.
Carb sources are often miss identified and people tend to just look at the GI. This only indicates the peak blood sugar it can produce, not the total load it produces. e.g. an apple has a similar amount of sugar to five spoons of sugar, but the GI is low. That sugar still needs to be dealt with so it will raise blood sugar for a longer period. if that period lasts till the next snack, or meal, then the blood sugar level never goes down and the cells never get a rest which leads to chronic inflammation and things like rls. Many people don't realise that bread has a high GI (white bread has a higher GI than sugar)
Yeah I didn't wanna make a really super long post but I've totally changed my diet in the last 6 months for this reason. Currently on an anti inflammation diet and I've been pescatarian for years too. No dairy and no wheat.....might have brown rice a couple times a week...been refined sugar free since christmas , still have a square of dark chocolate with some dairy free yoghurt but that's it these days...and yeah, white bread is about as nutritious as cardboard.
Yes that's sounds exactly like me wide awake at 3am gabapentine seems to leave me short of breath although I was not sure if it was the gabapentine doing that maybe it was now hearing you, I have a very active mind also snap
Yeah it's totally the gabapentin - I didn't realise for a few days...probably in total I got side effects a week after taking it....I kept having to gasp for breath which became more regular, like I'm struggling for oxygen....then I thought I had the old Corona virus! Realised that night it must be the meds so didnt take it that night and by the next day breathing was fine.
Have you found anything else that settles your mind? Valium is the only thing that actually works for me which effectively is a synthetic method of binding to the gaba receptors.
Gosh yes shortness of breath, thought it was obesity but no longer obese and still have it, was worried about heart issue, phew thanx for the info great place to help each other.
Hi Anthony. Sorry to hear of this which, unfortunately, possibly a common expereince for RLS sufferers.
Anxiety is possibly a factor in your case, as aluminumium, I believe, quite rightly says and his/her advice is good.
It is possible that the dopamine agonist is contriburing to the early waking, but 88ug is a relatively low dose.
It is a shame the gabopentin gave you respiratory problems. This is a known risk of gabapentinoids. However, it usuallu only occurs in people who have some other respiratory problem.
I wonder then if you do have some other respiratory problem or if you're aware that you have sleep apnoea. In view of the fact that your sleep is disturbed this is another possibility which might be worth discussing with your doctor.
It is possible that dietary elements are one of several possible factors in RLS and insomnia. It might be worthwhile keeping a daily diary of what you eat and the days yoiur sleeplessness is worse to see if any pattern emerges.
It's well accepted "Uncontrolled" high blood sugar can lead to symptoms e.g. in type 2 diabetes and I wonder if you've been tested for this.
This could DEFINTELY be a side effect of your dopamine agonist! Compulsive behaviour- such as your mind racing like you describe is EXACTLY what happened to me on sifrol. Even when I attempted to go back on the lowest dose of .25mg it came back. Then stopped immediately when I stopped the sifrol. At one stage I ended up on 1mg sifrol- (and my doctor had no idea about the impuse control issues it can cause). I almost went insane. My mind was seriously SO wired to the point i felt I was going crazy. I will nnever use a DA again.
Sifrol I'd not heard of but just had a look and it's Pramipexole.........and yeah I'm on the "entry level" dose of 0.088mg. I've gone back to it (after 10 years of being on Ropinorole) to see if it would make a difference to the insomnia but it hasn't at all, even though the dose is probably a lesser equivalent than the Ropinorole.
It's interesting as like you say the dosage doesn't seem to make a difference - it just seems to have that effect altogether.
So when you stopped the Pramipexole it stopped?? And what did you use instead?
Yep. As soon as I stopped the pramipraxole the wired thoughts stopped. Both on the highest and the lowest dose. The time I was on the ridiculously high dose (this time my g.p didn't know about augmentation either - that why he kept increasing my dose) - my impulse control got SO bad. To the point one night when I couldn't sleep I got up and wrote a book all night long! Then other things started to become apparent- always thinking about and eating food for example!, Hoping on the internet and unable to pull myaelf away, I occasionally and recreational smoked cannabis and I started to think about smoking it non stop!. All of these things dissapreared immediately when I stopped taking it.I have been through SO many medications for this disease and have settled on opiods - namely long acting oxycodone (called targin in Australia). I also have been needing short acting (called endone) for breakthrough. After speaking with a specialist in the U.S I am now in the process of trying to switch to another opiate called buprinorphine which is showing fantastic results for RLS patients and also doesn't seem to be need to be increaed in dose over time like these other meds.
As for insomnia I am treated really well with a medication called agomelatine- brand name valdoxan.
It is used to treat depression (in my case depression is caused by lack of sleep!) But it is totally different form of antidepressant (SSRI antidepressants are REALLY BAD for RLS!). It works on getting the circadian rhythm sorted properly in your brain for sleep. So effectively it is a sleep medication. I do occasionally also use diazapam or zoplicone on nights I've had enough and want a good sleep. But with the opiods and valdoxan I see good results.
Even though I don’t want to hear of anyone else suffering like I do - it has actually helped to hear that I’m not alone or going mad with my feelings.
I take paroxetine and letrozole . I’ve managed to cut my dose of paroxetine by half now But do need to stay on my present dose . Letrozole I have to take for the next 7 years to prevent breast cancer returning. I have suffered rls since childhood in bouts but it wasn’t until I started taking letrozole that it started badly .
Letrozole cause terrible night sweats which keep me awake . The rls is horrific I’m afraid and I dread the feeling . It starts for me when I try and go to sleep. Sometimes it starts whilst I’m downstairs on the sofa . It’s not just my legs - it’s my arms , abdomen and neck that I feel it . I feel like someone is charging me with electricity and won’t stop and that I will explode . Yo me it isn’t a painful feeling . I’ve heard it called ‘ an uncomfortable feeling in the legs .’ To myself it’s is much more than that - indescribable. Sometimes I feel like hitting my head on the wall or my bedside cabinet just to get rid of it . Anything but this feeling . I haven’t ever done that but it’s just so horrible.
I have a hole in my bowel so diet is poor so until I Have surgery up in Manchester- huge surgery ! But it needs to be done . ( on hold at the moment.) I can’t rectify my diet.
I just feel like you when I am totally exhaling the day . I was a primary school teacher and have had to retire early due to ill health so at least I don’t have to get up and go to work. I would be terrible if I had . I walk my dogs each day and try to do this earlier in the day rather than later.
I do really feel for you all that have what I would call ‘extreme rls.’ It’s strange as I look for distraction . Sometimes I will go downstairs and have some hit milK and a biscuit and this seems to help but I don’t want to keep doing this .
I have stomach pains some nights and it’s strange as when I suffer with these the rls doesn’t appear . I also had a bad migraine a couple of weeks ago and again no rls . It’s almost like a distraction.
I’m glad I’ve joined this site as I really have felt very alone and as if I am going mad . I hope this helps a little with others .
Yes. Cymbalta, like most anti depressants, worsens RLS. It can cause it for a lot of people who have never had RLS before as well. There are a few safe anti depressants- Trazodone for example.
Sorry to read what you're going through. Improving the diet will definitely improve your symptoms I think...how come you're not able to make changed until your operation?
Hi I have a hole in my bowel - an operation that went wrong 3.5 years ago . I had bowel cancer at 32 and have ended up having 6 major ops over the last ten years . My last operation left me like this and I have a two big holes ( fistulas) on my abdomen . My bowel is kinked and anything that doesn’t digest in my stomach gets stuck and I End up really sick In Hospital . I can drink a little fruit juice each day and have tried blending fruit and veg but it comes straight out my fistulas and I suffer with burnt skin etc - it’s a long story . I’ve seen a specialist dietician but until the bowel is mended I am very limited . I take supplements of course . Also had 4 bouts of sepsis and breast cancer too so a complicated case !!!!!
Anxiety is my bugbear. Stressors for anxiety abound, and it is in their accumulation that triggers the need for therapy, whether self-guided or not, to overcome the brooding, the self-preoccupation arising from a continually active mind of being an “anxiety-ridden animal”. It is my brooding and obsessive over-thinking that is often termed rumination. When people ruminate, they self-reflect, over-thinking or obsessing about situations or life events, a maladaptive focussing of attention on negative repetitive thoughts and emotions.
Mindfulness has been shown to reduce rumination, the practice of mindfulness, usually taught through meditation, consists of learning to purposely bring your attention back to the internal and external experiences occurring moment by moment, taking us out from being “caught up in our thoughts” and “living in our head”, and waking us up to the sights, sounds, smells and tastes of the present moment. Mindfulness as a mental state is the same as an awareness of the present moment, in which each arising occurrence is experienced in a non-judgemental way “with curiosity and awe, as if for the first time”. If rumination is the tendency to dwell in the past or worry about the future, mindfulness promotes a "gentle shifting of the mind back to the immediate experience of the present".
Mindfulness and simple breathing exercises are techniques in self-guided therapy for stress and anxiety. I have to say that I found mindfulness difficult - I'm too wired. Simple breathing exercises work better for me, as does self talk which can alter your perspective, verbally block unwelcome thoughts and take away some of the helplessness. Other than that, break the pattern, seek a displacement or distraction.
Yeah mindfulness is definitely something that can help in certain situations....mine though is definitely neurological or physiological. I think just side effect of the meds. I know this mainly as I have no problem falling asleep....I just have very shallow sleep then wake up for no reason....and my mind is over active, but not worrying about anything, just "stuff"....I'm totally the opposite of a worrier and I rarely stress over anything...probably the opposite....but my mind feels like it's in problem-solving mode or something...or replaying conversations in my head...like you had too much coffee, that kind of thing.
Breathing technique can help though, I do practice a lot....
You've got some good responses now, some possibly a bit misleading. There's a few things you can try now.
Just a couple of thoughts. The "Impulse Control Disorder" (ICD), that dopamine agonists can cause is not the same as "ruminative" thoughts. ICD is compulsive/ compulsive behaviour e.g. gambling, shoppin, overeating etc. I suppose a milder form might be just thinking about overeating etc, not actually doing it. However, ruminative thoughts or simply "worrying" can be a result of anxuety and/or the hyperarousal state that RLS causes in any event.
Mindfulness and mindfulness CBT, especially can be helpful and effective in dealing with the issue. The CBT version will be more effective, but some mindfulness courses, books, web sites etc may inlcude some of the CBT aspects. Additionally mindfulness is considerably more than breathing meditation.
I have been reading a little more about diet and RLS. It appears that excluding added sugar or anything with "simple" sugars can help prevent chronic ( "subclinical") inflammation. Although this can lead to a few health conditions, it doesn't appear to be a direct "cause" of RLS, but is a "mediating" factor in it. That is, one of several factors. A more general anti-inflammatory diet might help reduce inflammation. However, there a few causes of inflammation and they're not all dietary.
Anecdotally at least it appears that too much simple sugar can exacerbate RLS the same day. The reason for this appears to be "reactive hypoglycaemia" which is where there is oversecretion of insulin is in order to reduce a sudden influx of glucose. Hypoglycaemia is where blood glucose falls below normal levels and it's hypoglycaemia that can lead nerve cells to become more excitable.
All to say, diet may be a significant, longer term, factor in reducing RLS, but like everything else won't be a cure.
A retired druggist suggested I take Unisom (doxalamine version) and I have taken it for several years. It is an antihistamine, long on the market, OTC, and seems to extend my sleeping. I only take 1 pill at bedtime, but the actual adult dose is up to 2 pills. My current bedtime routine meds are my Unisom, gabapentin 300, ropinerole 1 mg, Xanax .25 mg. I usually sleep about 7 hours. I have had chronic insomnia for about 20 years, but this conquers my issues. If I mess with removing anything, I loose sleep. So, I just take it. Lately I have been waking up around 5 am, and not able to get back to sleep, so I try to stay awake longer at night so I sleep in longer. It worked especially well last night. I slept in until almost 8 am!!!!
Your retired druggist was correct doxylamine as found in unisom is a sedating antihistamine and hence on the face of it would seem a good suggestion for helping you to sleep. Unfortunately, it appears they hadn't thought that as sedating histamines reduce dopamine levels, they can make RLS worse.
This sounds like a glutamate issue. The RLS Foundation website says:
"In 2013, scientists at Johns Hopkins identified the involvement of another neurotransmitter – glutamate, which is associated with arousal (wakefulness). Researchers found elevated levels of glutamate in the brains of people who had RLS. The extra glutamate is thought to contribute to PLMS – and to hyperarousal."
Yeah that sounds exactly like me. I've read a few gaba/glutamate articles but not that one inparticular. Thanks for the link. I think low iron levels in the brain could be the culprite despite my blood levels being within range.
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Sleep, Anyone? Anyone?
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