Have any of you suffered from hyper insomnia, then changed meds and had some good sleep at last?
At very long last?
I am still on a small-ish dose of pramipexole, ready to wean with the help of methadone. Benzos make no difference to sleep, sadly. Nor do all the whacked out remedies, magnesium and herbals I have tried over the years, dozens of them. Ka-ching, ka-ching, money down the toilet. I won't do soap!
I have tried cannabis and kratom, also with very iffy results at night, though they both help quite a lot with the Fallout Misery during the day.
I know that insomnia is a part of RLS, unrelated to the movement issues, a sort of nasty conjoined twin. I have some understanding of the glutamate/GABA/adenosine links, as much as a non-scientist can. I also understand the very strong Periodic Limb Movement Disorder connection, which contributes to high blood pressure and sudden increases in heart rate during sleep. (Both of which I have).
Which of us sleep, and why? Dopamine agonists or gabapentin or opioids? Something else altogether? Combinations?
I would love lots of input, insomnia is gobbling up my life like a Dementor.
And it would be good to get an overview for all of us and our practitioners. After all, this thing we have is categorised as a Sleep Disorder.
If you reply, please say if you have Primary or Secondary RLS, that might be interesting to know. (Mine is inherited).
Thank you.
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Parminter
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Yes I have struggled hugely with insomnia (in addition to rls disturbed sleep) since I came off pramipexole post-augmentation 2 years ago.
For me opioids were particularly problematic and when taking OxyContin I would regularly lie awake all night - nice and mellow and symptom free - but completely wrecked the following day. Kratom also causes this to a lesser extent.
I have read a tentative suggestion that this hyper-alertness with opioids is specific to rls sufferers.
I am sleeping reasonably well at the moment. Actually, I am sleeping incredibly well by my standards and usually get at least 7 hours mainly uninterrupted and reasonably restful sleep.
My regime is: 0.044mg mirapexin (which I take breaks from 2 days out of every 7 - on these days my sleep is broken up by rls); pregabalin (which I re-introduced about a year ago purely to help with my sleep problems as apparently it is good for inducing deep sleep). I currently take 100mg of pregabalin but plan to try reducing it again soon; Dipyridamole (helpful for my rls) -currently taking 150mg but planning to reduce this ultimately also to see how low I can go; I also take ldn (3mg currently but will probably increase shortly). I am taking ldn to see if it helps with my rls. So far it makes no impact on my rls but apparently it can take a long time to kick in. I think it makes me feel better during the day however.
The very best for inducing sleep for me is cannabis made up into an edible. I take it about an hour before bed and I sleep really well. Again, I take regular breaks to avoid tolerance and reliance. If I take it too late or take too much it can make me feel a bit dopey the next day.
I have tried sleeping pills (the ‘z’ds) and they do induce sleep but they make me feel wretched the next day.
My situation improved dramatically when I introduced dipyridamole. My days were suddenly transformed. I felt reasonably well rested and much more myself. It doesn’t completely eliminate my rls at night - hence the reintroduced small dose of pramipexole - but the effect on my days is fantastic. Unfortunately it is not for everyone as it is a blood thinner and can consequently trigger an internal bleed (obviously a very rare side effect but nonetheless worrying). I think the ldn has also helped improve my days.
I am not sure if mine is primary or secondary. My mother claims to have had it but I’m not sure about that. She doesn’t seem to recognise the symptoms that I describe. I have one cousin who got a bout of it but other than that no one of my relatives has it. I have 3 brothers who are mercifully symptom free. Mine came on in each of my pregnancies and sadly didn’t go away after the last one (16 years ago).
Dancer, thank you for that detailed reply, I so appreciate it.
Can you tell me what Idn is? Have I missed something?
Regrettably, dipyridamole is out for me, I bleed on baby aspirin and there is a history of cerebral haemorrhaging in my close family.
For your edibles, do you use a high THC cannabis? Do you smoke ever?
The 'mellow but without sleep' is good to know, I had wondered. What bloody otherwise brains we have!
The benzos are another puzzle.
I have recently read of a sleeping pill that works off different receptors, the orexin receptors I think. I must hunt it down.
Odd, how so many things work backwards for us.
I recently had two amazing nights of 7 hours sleep after iron infusions - how different life is on a little sleep, it is not much to ask for, is it? But it has not lasted, the last few nights have been entirely pear-shaped.
Now I shall take some kratom to lift the day a bit.
I must have missed this reply - was busy over the last few weeks. Apologies for my failure to respond.
Ldn is low dose naltrexone. Naltrexone is used to help with cravings for opioids to assist addicts to kick the habit. It was discovered that at low doses it has multiple benefits (I intermittently remember the physiology of it but can't recall just now - suffice to say that it is one of those drugs that 'big pharma' can't turn a fast buck from because it is out of licence so there is nothing good that it cannot do - it will save your marriage, lower your electricity bills, get your first novel published etc etc). Some people have reported good effects on their rls and I thought it might be worth a try.
It can take months to take effect unfortunately so I am going to give it until december - very much the triumph of hope over experience here. It does seem to make me feel better during the day. I don't think it would be hugely helpful for you because you have to leave hours between taking it and taking an opioid and it sounds as though you need to at least leave open the possibility of taking your teaspoon of methadone. It is troublesome for me when I need to take kratom.
As to cannabis, it is illegal where I live and I had difficulty sourcing it (in spite of teenage children) so I took the plunge and grew it myself (I enjoy gardening). I have tried a number of strains (medical mass, sensi skunk, northern lights, white widow). They are all reasonably high in thc. I think it is the thc that helps rls sufferers to find sleep. I am still hoping to light upon a strain that also helps my rls and am planning to grow some strawberry cough next because Raffs says that helped his rls.
I always take it made up into an edible. In the early days, I used a vaporiser sometimes but it gave me an alarming pain in my chest which had me thinking 'lung cancer' and feeling like a hypochondriac so I gave it to my brother who is a lawyer and consequently appreciates such things.
Do you take pregabalin? It is supposed to help particularly with deep sleep. Another avenue I have been meaning to explore is free weights as when I did this years ago I slept really, really well. I haven't got organised to resume recently however. I hope you find something that works. As you say, insomnia destroys your life.
hi involutarydancer just read your post to parameter about insomnia, I also suffer with this since RLS its bleeding horrible up every night ,(sorry for swearing)but it really gets me down. I don't think I've slept for two solid days. If you read my post what I sent to parameter you will understand my predictument I am so fed up with it all. Not being able to sleep, it really gets me down.XXXXXXXXXXXXXX SUE
Swear away, Connie, I feel your pain. It seems so unfair that we have been struck down with this awful condition that robs us of everything that makes us feel like normal human beings. And to add insult to injury, non-sufferers don't have even an inkling of an understanding of how bad it is.
hi there your right about what your saying about non-sufferers, I feel so guilty in front of my husband& sometimes my daughter.they do everything & I mean everything, for me but they still don't understand RLS or INSOMNIA I've tried showing them clips on the condition but they don't want to know, if they would read it they would understand what we have to put up with. Anyway enough of my moaning X SUE
With regard to the hyper-alertness with opioids, to generalise to hypervigilance, which may or may not be apropos.
The latest science says that we have a thinning of the somatosensory cortex, which might make us hyper-alert to almost everything on the planet - all sensory information, including noise, touch, chemicals, smells, social relationships, the whole shebang. We are hypervigilant, with a huge startle response.
We are what used to be called 'very sensitive'.
Our brains are different, not just chemically but STRUCTURALLY. Sorry to shout, but I want us all to take that to our doctors, who often are doing the wrong thing.
I have been sleeping (or mostly not) with earplugs and a mask because the slightest noise or light wakens me. Earplugs now for fifty-five years.
Hi I haven’t spoken to you yet but found your post amazing - you have just discerned PTSD symptoms and brain chemistry - do you mind if I ask do you have PTSD or are all of the things you discribed attributed to RLS and where did you find the info ? Thanks Jan
The PTSD link is very interesting, is it not? There is yet another link, to ADHD.
I had a very traumatic birth, I have suffered many traumatic incidents during the course of my life, including sexual assault, strangulation and hijack, amongst others.
I made the link to the traumatic birth after I self-diagnosed as having ADD, just a few years ago. I immediately researched it at found there was a 40% co-morbidity with RLS. more or less.
(The problem with ADHD is that almost no-one associates adult women with the condition, and it looks very different in us, And we're given SSRIs, very bad news for RLS......what a tangle).
All three conditions are involved with a thinning of the cortex, at any age. And thus with hyperarousal.
So, I am fortunate enough to have all three! Well, ain't that a kick in the head!
You may address me with my full title - Parminter RLS; ADHD; PTSD; BAFA, all pretty much cum laude.
I also have a lifesaving medal.
Woohoo!
I am now going on the hunt for Prazosin, which another person posted about a few days back. Thank you, whoever you were.
Now there you are, you have a lot of googling to do!
(I have a typical ADD brain, we think laterally, so we are quite good hunters. I have never seen this all put together in one place at one time. I want to publish it,)
Hi again it was me who posted about Prazosin or in Australia it’s called Minepress - I have PTSD from , like yourself many traumas - they change brain chemistry- which is our problem and why we have so much trouble with meds- I would really like to know how many people with RLS had some kind of trauma physical or emotional in childhood or any time really because when my doc put me on this Med that is really for blood pressure - on a really small dose - it has stopped my RLS as new research has found that people with PZtSD respond to this med (somewhat laterally) but I don’t care it has been a miracle for me - thanks again for your informative posts - Jan
Hi Parminter - another thing I have discovered is that some meds cause insomnia- the one I take is Sifrol x 3 per night - Other name is (Pramipexole 250 mcg) this is known to cause insomnia- so my suspicion is that because our brain chemistry is faulty and most of us are on several meds - the side effects of these meds is insomnia and also not enough is known about the interaction between meds- I believe it’s the meds causing insomnia- NOT RLS! This is a fact in my case - Jan
Hi Parminter, can you copy in a link to “the latest science...thinning of the somatosensory cortex”? Sounds interesting, but I’d like to read the original and get an idea about cause of consequence. I suspect they found a correlation, and wonder about te strength of it.
""But our results show that it is actually the somatosensory cortex that appears to be the part of the brain most affected in patients with restless legs syndrome."
"We were stunned by these findings," he added. "This shifts the area of interest to a completely different part of the brain."
"Iron is known to affect the myelination process," he said. "The somatosensory area of the brain is heavily myelinated and therefore more sensitive to myelin deficiency."
While iron supplements are often prescribed for restless legs syndrome, Yang says iron salts are not well taken up into the brain. "It might better to give ferritin — the natural substance that carries iron in the body which is thought to penetrate the brain more effectively."
Coauthor of an accompanying editorial, Robert J. Thomas, MD, Beth Israel Deaconess Medical Center, Boston, Massachusetts, commented to Medscape Medical News that this study "has brought attention back to the cortex as the focus of research into restless legs syndrome."
"The involvement of the cortex could explain why symptoms of restless legs syndrome become permanent in severe cases," he said. "And if the cortical changes are secondary to untreated disease activity, perhaps this is an indication that we should be treating this condition earlier."
Dr Yang, one of the researchers, also RLS, so I am inclined to take him seriously.
Yes I have difficulty with insomnia, but since recently being diagnosed as also having bipolar, I have been prescribed a new med to help control my mood.
However, as a mood stabilizer, it unfortunately has been a major fail. But
oh the sleep that it allows is simply just magic. The new med is Seroquel, however, unless you are in need of a mood stabilizer, I doubt very much that you would be successful in gaining said script just for insomnia.
Well .... by all intents and purposes it should be working by now, but apparently I'm a pretty hard nut to crack. And I have not had the kind of sleeps that I'm having ever. I fall asleep quickly, sleep soundly, no dreams, if I wake, I fall asleep again easily, and I wake up with a clear head.
Because I grew tired and frustrated trying to explain RLS to the clinicians, I stopped trying and found that insomnia (which of course I had as well) was a much more acceptable complaint to them. I was on sleepers for over 30 years (mainly temmaze) but always felt drugged and groggy. Seroquel (to me) far outweighs any sleepers that I have ever had in the past. I was offered a replacement for the Seroquel but within 3 days the side effects far outweighed the proposed positives and were so bad that I ceased taking it.
And then I was offered another, but to be quite honest, I'm getting to the stage where I'm over taking pills.
Yes I have heard that Seroquil is a great drug for sleep - however not in the doses prescribed for mood stabilisation as the side effects are rather bad. I know a few people who get insomnia relief from taking 1/5th of a normal dose.
Just wondering, how does one manage to get 1/5th of the lowest dose? I requested less in the beginning, (as RLS was hovering), but they are the tiniest little pills ever, with no score mark. But I asked my dr not the pharmacist. Maybe therein lies my problem. Thanks for the info, I'll ask my pharmacist tomorrow.
hi I have just read your post on insomia,RLS mine is also inherited from my mothers side of the family, I went to see a sleep DR at the hospital when I told him it was inherited he was quite surprised,& so was I. I thought every GP/hospital DR had a bit of knowledge when it came to RLS.but apparently not. I also suffer really bad with insomnia, that's another reason I went to see a sleep DR, I just cant sleep at all, last night 13/06/2018 I never closed my eyes but this morning all I wanted to do is fall asleep, but the hospital DR as told me I have to stay awake, its very hard to try & stay awake when you've had no sleep for two nights. Anyway hope this helps XXX
I too have had the lecture on not sleeping during the day. I say 'It isn't sleeping doc. it's collapsing, I do not think you're listening to me'.
We have sleep deprivation, plain and simple. And it is long-term, as in year after year. No different than a soldier, but we are on our own lonely battlefield.
Sleep deprivation shortens our lives, it makes us susceptible to heart attack and stroke, it clobbers our immune-systems and hugely increases our risks of dementia. It makes us old.
And our quality of life is down the drain. I don't know about you, Connie, but I have turned down a thousand opportunities because I am too exhausted to get out of the door, and too dangerous to drive.
If a sleep specialist does not know these things he/she is lazy-minded and not doing their due diligence, it is in every overview I have read. And not knowing that primary RLS may be inherited is just negligence. Perhaps they were asleep during the half-an-hour they were lectured on it.
They have this idea of 'Sleep Restriction' now, for ordinary insomnia, where you reduce your sleep hours ruthlessly to five per night, then up to six, then seven and so on.
Well, according to Dr Earley, the REAL specialist, RLS sufferers get an average of 5 1/2 hours anyway. And that would be broken sleep, not five-in-a-row.
And during the day, if you are like many of us, you will collapse, and after ten or twenty minutes the RLS will kick in. Then thoughts of suicide creep in, there is just no escape. But you don't off yourself, you just get up and stagger on. And cry. But you achieve nothing because your brain is not working properly.
I am going to reply to Dancer above, so read that too.
Insomnia is no joke. And to have it alongside RLS is straight out torture. Yes, it is almost criminal the lack of knowledge that the clinicians have concerning sleep problems and RLS. Just turn the damn laptop on guys.
Thank god I no longer have that problem. My insomnia was so bad (without medication .... and sometimes with) that I would get so fatigued, nausea would set in, quickly followed by vomiting. It was always a mystery when I was a child as to why I was so vomity. I doubt that a week would go by that I didn't have my head in a basin and/or bucket. Gosh they was so clueless. There seemed to be no rhyme nor reason as to why I should be. The importance of sleep was never realised back in the day.
Just thought of a little story you might find of interest and maybe can relate to.
Several years ago, maybe 10/15 I was sitting with family watching TV one night. It was during a school holiday period and over here in Oz, during the school holidays there were ads on TV advising driver's how to take more care on the roads.
The symptoms to look out for were described as yawning, eye stretching, heavy shoulders, lack of concentration, and driving in the 'zone'. Without realising, I spoke up in front of everybody, 'Is there any other way'? Oops I said, did I actually say that out loud?
I lived in the country and everywhere was long distance travel and even to this day, whenever I get behind the wheel, I am acutely conscious of the fact that I am driving in the zone. I always drove fatigued because I always was. 64 and not one accident.
Good to talk to you after an itsy-bitsy broken-up night. Sunrise on mid-Winter day.
I live in Africa, also rather large-ish, and for years I have been very worried about driving any distance, including to the supermarket. I worry I will hit a child who suddenly decides to run.
My only family is my brother, and he lives about 100 miles away. I seldom see him because the road, while it is a good highway, is filled with trucks and taxis and very fast cars. You can't do that while you're 'zoned'.
Insomnia is not 'alongside' WED, it is part and parcel of the disease for many of us. So it exists separate from the movement-insomnia, as a horrid little bugger of a twin.
Grany, with regard to the bipolar, do YOU feel that you have bipolar, or does your shrink think that?
Perhaps it is impertinent to enquire, you need not answer, but my experience with shrinks is that they get labels from an epically long biblical-shrink tome, about as high as Mount Everest, and slap them on patients almost at random. They have to do something in order to pay for those huge mahogany desks.
I think I posted elsewhere that, according to the RLS Foundation, WED patients see, on average, 3.4 physicians and are prescribed, on average, 6,2 SSRIs before they are properly diagnosed. (We should not have SSRIs). That is more or less what happened to me. All dead wrong, all damaging. Labelling people is very bad news when associated with mental/spiritual states. They stick.
And I read, just a couple of days ago (here?) that a child with raging RLS had been misdiagnosed as paranoid, and medicated accordingly.
I think the anguish of WED over decades can cause all sorts of oddness to arise, but it is not the root cause. We need root-cause healing, not labels.
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Buprenorphine - paired with sleeping tablets, UK
RLS = Sleep Deprivation
Sleep Tracker Recommendations?
Augmentation & No sleep
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