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Restless Legs Syndrome

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Insomnia

Hoochybaby profile image
56 Replies

I have written many times in the past and found info most useful

My big problem is lack is sleep due to insomnia and rls

I deal with a neurologist in Sheffield but I have never seen her because the pandemic hit at the same time as my appointment she is knowledgeably unlike my gps who no nothing or don’t want to know about rls

However I think my neurologist has admitted that their is not a lot more can be done for me!

I currently take two 75 mg pregabalin at night and two codeine 30 mg also but unless I take a zopiclone at night I don’t sleep due to my rls!

Over the years I must have tried everything suggested on this site and although I’ve had some success in the past I’m back in the old routine

My neurologist does know about augmentation and I’m currently not taking any da,s but she has hinted about going back on to a low dosage of Pramipexole! Of 88mcg but I don’t want to go down that road again having suffered augmentation in the past

I have tried all the non pharmaceutical drugs etc to no avail as well as nightly massages, tens machines, compressed socks, hot and cold treatments of the legs as well as cutting out sugar which I have found aggravating my rls as well as caffeine

I don’t drink or smoke but the lack of sleep is making me severely depressed and I do have a heart condition which is being exasperated by my insomnia

Most nights I walking the bedroom at 3 or 4 am

Unfortunately I feel I’m at the end of the road I can’t get a telephone consultation with the neurologist for som months and the gps are not interested

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Elffindoe profile image
Elffindoe

Sorry I can only say what the latest recommendations are.

1) Have blood tests for iron deficiency and if all these arenormal then -

a) if ferritin is less than 75 start an oral iron supplement

b) if it's between 76 and 100, seek an IV infusion

2) Identify any aggravating factors and if possible eliminate them.

3) medications :

For persistent RLS the first line medications are gabapentin or pregabalin. A typical dose of pregabalin is 150mg, but the maximum is 450mg.

If pain is a feature of RLS then codeine ( or tramadol) can be used intermittently in addition.

If poor sleep is a feature then a benzodiazepine can be used intermittently in addition.

For "refractory" RLS

Either combination therapy e.g. gabapentinoid, dopamine agonist, coceine/tramadol and benzodiazepine.

OR

Opioid monotherapy, a low dose, high potency opioid e.g. oxycodone, methadone or buprenorphine.

That is the medical treatment.

If RLS is controlled then nothing else should be needed.

If insomnia is a major problem, then cognitive and/or behavioural strategies may help.

CBT-i nas been found to help with sleep problems for people with RLS and has been mentioned by Dr Buchfuhrer.

However, I'm not sure how you could access this therapy.

Hoochybaby profile image
Hoochybaby in reply toElffindoe

Thanks for your reply CBT has been suggested by my neurologist but nothing forthcoming and apparently on the nhs there is a waiting list of many months

Elffindoe profile image
Elffindoe in reply toHoochybaby

I'm afraid that is the problem. It isn't easy to access good quality CBT therapy.

Please note also that I refer to CBT-i which is a specific form of CBT, the "i" stands for insomnia. I don't know how available that is at all.

The only reason I mentioned it was becasue it does show that some cognitve or behavioural strategies may help.

You may find a self-help book which might give you some ideas on swhat strategies you can us. The simplest one might be "CBT for dummies". I think it's quite inexpensive.

This even more so if your RLS is fairly well controlled but you still have insomnia.

Insomnia can be a condition in itself. People with RLS are not the only ones to suffer! There are also different forms of insomnia.

The World Health Organisation identify 3 different forms of Insomnia and 7 forms of circadian rhythm sleep wake disorders.

It may also be an idea to seek a referral to a sleep specialist who could carry out a polysomnography test to see if you have any sleep related disorders. That however could be a long wait too!

Tennesseean profile image
Tennesseean in reply toElffindoe

Elffindoe, I have a question about the ferritin level. You say for less than 75 to take an iron supplement but 75-100 should get an iron infusion. I would think that would be in reverse? Just curious. Thanks in advance for your response.

Elffindoe profile image
Elffindoe in reply toTennesseean

What I wrote is correct.

The reason is that how much iron that can be absorbed from the intestines is limited by a hormone called hepcidin.

This prevents iron overload.

It's a little more complicated, but in simple terms, the higher the ferritin level the more hepcidin is released. Hence, if ferritin is over 75 then hepcidin will make it difficult to get it any higher.

The higher the ferritin, the more difficult it gets to absorb any iron from the intestines.

An IV infusion completely by passes this as the iron goes directly into the blood.

This is potentially dangerous, so precautions have to be taken to ensure iron overload doesn't occur.

A blood test for transferrin saturation is also needed. If this is over 45% then an IV infusion is risky.

There is a genetic condition called haemochromatosis. People with this can't produce enough hepcidin and hence, even on a normal diet with no iron supplement, they get iron overload.

This is disabling and potentially fatal.

However, the problem for anybody else is that it is not easy to raise ferritin levels with oral iron. The higher the ferritin is, the harder it gets.

One "trick" to fool hepcidin is only take iron supplements once every other day, NOT daily.

SO OVERALL although it would seem logical to take large amounts of iron frequently, in fact, it's not how much you take, but how much is absorbed that counts. Taking it less often can increase how much is absorbed by up to 50%.

Tennesseean profile image
Tennesseean in reply toElffindoe

Thanks for your excellent response!! Much appreciated.

annawats profile image
annawats in reply toElffindoe

Hello. Insomnia is a really serious problem for many people. According to statistics, almost every third person periodically meets with insomnia. I am one of them. And I tried to deal with this problem in various ways: starting with meditations and ending with alcohol. The second, by the way, often helped. But with a hangover, going to important meetings, as you understand , is not an option. So I started taking sedatives. I read that I feel terrible after them. But in reality it is not so at all. I took medications from the site: megalithic.co.uk/article.ph... and I feel great.

Joolsg profile image
Joolsg

Many of us have been in your position. Codeine is the LEAST effective opioid and you should ask your neurologist to consider stronger options. What is your Score on the International RLS scale? If it's severe then you should ask for a medication review.I was 36/40 on Oxycontin and pregabalin and my neurologist had said that was as good as I could expect. Dr. Buchfuhrer was not impressed & said my neurologist clearly wasn't an expert if he dismissed me in that way & couldn't do more.

Luckily, I finally listened to Shumbah & the other ( mainly women) who had failed the DAs, the Alpha2Delta ligands & the opioids like tramadol & Oxycontin and asked for low dose Buprenorphine.

I cannot express how wonderful it has been. Like Shumbah, my severe RLS is now completely controlled. No more pacing for 2 hours a night, no more being woken at least 3 times a night.

There seem to be many women on here who have failed all the other, main meds, have tried changing diet, have had iron infusions and still have severe RLS.

You may well be one of them.

Hoochybaby profile image
Hoochybaby in reply toJoolsg

Thanks for your reply although I’m no a woman it’s interesting to know what others take in medsBuprenorphine is it an opioid? And is it likely my gp or neurologist will prescribe it?

How do I get to check my rls on the international scale where do I find it?

Elffindoe profile image
Elffindoe in reply toHoochybaby

You can get a better version of the severity scale if you google "irlssg severity scale".

The one on the RLS UK site is a bit small.

Sampsie profile image
Sampsie in reply toJoolsg

Hi Jools, I was prescribed Buprenorphine with a starting dose of 2 mg and I had a terrible time if it, nearly called for medical help as I was effectively over dosing. It took me 3 days to recover. I've been too scared since to try it again at a lower dose. I'm back to 5mg Tramadol with prescription cannabis and 2 cocodamol which leaves me awake most of the night. I can't take gabapentin or pregabalin due to hair loss and stomach/mood/sight issues.

I've been prescribed clonidine for autonomic dysfunction and I read some people with RLS are helped by this so I really don't know what to try. Since the over dose I'm super wary of trying new drugs. And of side effects. I feel like there's nothing left now. I felt really awful on Oxy. All opiates keep me wide awake.

Joolsg profile image
Joolsg in reply toSampsie

2mg is really, really high. I started on 0.8mg and, like you, had terrible side effects. Extreme nausea & vomiting. I reduced the dose to 0.2mg but RLS breakthrough happened. Increased to 0.3mg and zero RLS but nausea was still there. I stuck it out as it was my last chance saloon. My medical cannabis oil (20%THC) stopped the nausea.Then developed opioid anxiety/panic so added 50mg pregabalin at night. That stopped the anxiety.

So now I have zero RLS and am sleeping 8 hours every night.

I would suggest starting Buprenorphine again, but start with 0.2mg and only increase after 2 days if it doesn't stop the RLS. Increase by 0.1mg by using a pill cutter.

Nausea is extremely common for at least a week while your body adjusts but Zofran helps many and medical cannabis will help nausea.

The anxiety can be remedied with diazepam/clonazepam or pregabalin at low dose and usually will subside.

Opioid wakefulness/alerting can also be helped by pregabalin or a sedating strain of medical cannabis oil taken at night. It's available on private prescription in the UK through project-twenty21.

I couldn't carry on with RLS every single night, despite Oxycontin & pregabalin.

Sampsie profile image
Sampsie in reply toJoolsg

Thanks Jools. I wish I could take Pregabalin but I don't want to be bald. As it was great for my RLS. I think my scalp is damaged now anyway, as I get the same burning sensation followed by shedding which is upsetting.

I will get a pill cutter - great idea, and maybe give it another go. I need a sedative and I have sleeping tablets which I avoid taking and THC. It's scary though. I wonder if the clonidine can be used for that? My sleep consultant said I can't take sleeping pills or other opiates alongside though. The clonidine is from the autonomic consultant to calm my system down as it's in overdrive. Confusing isn't it!

Joolsg profile image
Joolsg in reply toSampsie

It is. I hate taking meds to counter side effects of other meds. The THC with the Buprenorphine was fine for me- but we are all different aren't we? That's another confusing thing with RLS- what works so well for others may not work at all for us.

sudokufan profile image
sudokufan in reply toJoolsg

Hi Joolsg, sorry to ask you a question on a bit of a side issue, but I was reading this pose with interest as I'm on 100mg Pregabalin twice daily, it's working fairly well for my RLS but I'm left with terrible insomnia all the same (even when I've no RLS). Don't know whether it's due to Pregabalin or not - doc doesn't think so. Some time ago you recommended project-twenty21 to me, but I didn't follow it up because the Pregab. route seemed to START working against my RLS. But I'm sure my awful insomnia is still at least in part caused by "fear of RLS/or insomnia". Do you think cannabis oil through project-twenty21 would be available to help with this latter?

Joolsg profile image
Joolsg in reply tosudokufan

I do! They prescribed Althea Cannabis Oil with 20% and it knocked me out for 3 hours before the RLS broke through. It didn't help my RLS but it did give me sleep. I think it is definitely worth trying. I only needed 0.3ml and 2 hours later I'd be in a deep sleep. Worked out at about £2.50 a day.

Elffindoe profile image
Elffindoe in reply tosudokufan

Sorry for the belated response.

I note that you seem to be saying that pregabalin is working for your RLS, but you still have insomnia.

Pregabalin is known to help with sleep.

Hence, if you're taking pregabalin and your RLS is under control, this suggests your insomnia is NOT due to RLS.

There are many other reasons that people suffer insomnia and you might consider that's what has happened to you.

Chronic insomnia can in fact become a kind of "habit", in which case , as suggested to Hoochybaby, some cognitive or behavioural strategies might help you.

Hoochybaby profile image
Hoochybaby in reply toElffindoe

I don’t think I’ve explained myself very well My rls is what prevents me from sleeping!

If my legs didn’t have this overwhelming urge to move I could sleep it’s very difficult to put into words the feeling only someone who is suffering from severe rls could understand and even then it’s probably different in each case! The only relief I get at night is to walk up and down the bedroom for hours and take codeine

I feel very sleepy but I cannot sleep because of this awful feeling in the legs as I said difficult to put into words!

Elffindoe profile image
Elffindoe in reply toHoochybaby

Hi.

I was replying to sudokufan's comment, sorry if you thought I was saying your insomnia was not due to RLS.

sudokufan profile image
sudokufan in reply toElffindoe

I think you're right actually. Am trying the "Calm" app. which has some bedtime meditation techniques. Good to talk with you again!

Joolsg profile image
Joolsg in reply toSampsie

Sorry - saw that pregabalin causes side effects- they did for me too. The hair loss is annoying but I'd rather lose my hair than have severe RLS & I'm researching nice wigs. The stomach & sight issues settled after 3 months for me. This time, the dose for anxiety is 50mg and I'm not getting any side effects. Thankfully.

Arkangel profile image
Arkangel

So sorry and I know how it feels. I haven't slept for more than 2 hours for years. Have you tried EFT? I use it for pain relief. I should use it for insomnia, but with the ME, I find it hard to be consistent. I would recommend trying it - you can google it. You can do it on your own, in your own time.

Joolsg profile image
Joolsg

😂 So sorry for writing about 'women' failing opioids.The IRLS scale can be found at the link below. Buprenorphine is an opioid similar to Methadone and used in getting addicts off heroin.

It is available in the UK and my neurologist wouldn't prescribe it BUT emailed to say he had 'no objections' if my GP agreed. I asked for a 20 minute Phone appointment & my GP agreed. I sent her the US opioid study which shows low dose opioids are safe & effective & the dose isn't increased & we don't become 'addicts'. I also explained that my RLS was extremely severe and I had failed Ropinirole, then tramadol, then gabapentin & Oxycontin, and Oxycontin and pregabalin. She was brilliant & agreed to prescribe it on a 3 week trial. I developed severe nausea ( very common) and my medical cannabis stopped that and I then developed opioid anxiety/panic attacks and a small dose of pregabalin stopped that. I have had ,ZERO RLS since starting it on 13 July. The RLS scale is downloadable at RLSUK.

rls-uk.org/diagnosis

joepublic profile image
joepublic

As you don't drink alcohol I recommend Targinact (opiate) as it relieves RLS synptoms but does leave me with a broken sleep pattern in bursts overnight but on balance much better than DA's.

lbrosa profile image
lbrosa

I am in a very similar situation. I live in Florida, USA and do not have the heart issue like you but have had rls for many years and have tried way too many possible solutions. My first prescription was Ropinirole which is a da similar to Pramipexirole. I suffered augmentation for a couple years before researching rls and realizing that was the problem. My gp as well as 2 different Neurologists just kept insisting that the rls was getting worse and that I needed a stronger dose as well as additional drugs . I finally refused and weaned off Ropinirole and then they gave me Pramipexirole and of course I had augmentation with that also! When I said "augmentation" even the Neurologists looked at me like I had lost my mind and claimed no knowledge of it. I have tried MANY other drugs nearly going crazy. I went to a 3rs Neurologist and he gave me Tramadol and suggested I try Ropinirole again at the lowest dose and desperate as I was I tried it and have done fairly well for the last year or so. Presently I have started having rls off and on during the day so I believe the Ropinirole is causing it and the Tramadol we had to increase. Reading again in rls.org they say Methadone is having some success for rls patients so I asked my gp if I could try it and she right away suggested I see a pain management specialist. My first visit was a couple weeks ago and he wrote prescription for very low dose Methadone BUT his first choice was to have a spinal injection. I told him I wanted to try the Methadone but would think and consider the injection. So far the Methadone is not helping and I sit here awake with my legs driving me crazy at 2 am!!! I am now scheduled to have the injection on the 28th. If that doesn't help I have no idea what will happen or what I will do! It is a crazy, nasty condition ... I will let you know how it goes! Good luck to you. Even tho it does not last long I find that a soak in the hot tub or hot shower brings me short periods of relief!

Heatherlss profile image
Heatherlss in reply tolbrosa

You live in the US where the best RLS doctors are. Please visit the rlsfoundation website and find a quality care center near to you. That would definitely be my first step.

Hoochybaby profile image
Hoochybaby in reply toHeatherlss

Sorry I live in the uk

Joolsg profile image
Joolsg in reply tolbrosa

Can I ask if you're still taking the Ropinirole as well as the methadone? Also please reconsider the spinal injection as any spinal surgery/ spinal injections can trigger worsening RLS.Why don't you email Dr. Buchfuhrer at

somno@verizon.net

He is a top US RLS expert and can give you free, expert advice. I'll bet he says to avoid spinal injections! There are several US Centres of Excellence & there's one in Atlanta, Georgia.

lbrosa profile image
lbrosa in reply toJoolsg

Yes, I am still taking Ropinirole 0.25 mg along with .w5 mg of Methadone about two hours before bedtime. It is my hope that I can eliminate the Ropinirole SOON as I believe I have augmentation with it again! I will definitely email Dr Buchfuhrer for his advise. I am 60 to 80 miles from Tampa or Orlando and now that we are older we do not drive that far. I have, however, reached the rather desperate stage as I feel like I have run out of options! Thanks for your help.

Joolsg profile image
Joolsg in reply tolbrosa

I definitely think the Ropinirole is the problem. Until you completely get off it, you will have augmentation.That last dose is the hardest and, sadly, you will go through the 2-4 week withdrawal. However, once through that horrible stage, the Methadone should then start to work.

4 weeks of suffering to get your life back is worth it. Many of us have managed it.

I know Dr. Buchfuhrer will say the same and that he will tell you NOT to allow them to inject your spine. That will just make your RLS even worse.

Out of curiosity, why haven't the doctors told you to drop the Ropinirole when that is causing augmentation? As you augmented on Pramipexole before, your D1 dopamine receptors are completely over stimulated and, until you get off that 0.25mg, they'll continue to cause problems?

I know there's a trial of a drug in South Carolina for those augmenting on Dopamine Agonists but you'd need to contact rls.org to see if you're eligible.

Joined rls.org costs $35 a year but it's worth it as you can contact local support groups and receive quarterly magazines with the latest research news. Your nearest group is in S. Carolina. Details below.

Many of us on this site are members of the US foundation, even though this is UK based.

Text
332linda profile image
332linda in reply toJoolsg

Thank you so much for suggesting that I rethink the decision for the spinal injection as well as to email Dr. Buchfuhrer fir his opinion. I did send him an email and got an answer already. You were so right tgat,he,did not recommend a spinal injection ay all for rls but that it might help with sciatic pain. I only occasionally have sciatic pain so I really want to deal with the rls right now. He again agreed with you and others that first it is essential to get off the Ropinirole. He also sent me articles about rls and augmentation to read and share with my doctors. He said I will need a stronger dose of methadone to help me get off the Ropinirole and then adjust it back down to hopefully keep the rls at bay. Thank you so much for your help... I am very thankful for this group

Joolsg profile image
Joolsg in reply to332linda

Dr. Buchfuhrer is a wonderful man. He answers so promptly and compassionately. I wish you strength in getting off that last 0.25mg and I just know you'll be in a much better place when you do. So many of us have been in your shoes.Take care.

Elffindoe profile image
Elffindoe in reply tolbrosa

I am a little confused.

Since you have RLS a low dose oral methadone is appropriate for RLS.

SPINAL INJECTION?

Firstly I can't see how this could help RLS, surely it's a treatment for chronic pain. Not the same thing.

Having a spinal injection is risky enough as it is, how often would you have one?

Going to a pain specialist may have been a great idea, but is the specialist treating you for pain, or for RLS?

Otherwise

Has nobody ever suggested taking an alpha 2 ligand for your RLS, gabapentin, pregabalin or gabapentin enacarbil?

These are now the recommended treatment for RLS.

The latest recommedations also state that if RLS is "refractory", i.e, first line medications (dopamine agonists or ligands), then the options are

EITHER

a low dose high potency opioid. This could be methadone, oxycodone or More recently buprenorphine.

OR

a combination therapy of any two of a a ligand, a dopamine agonist, a benzodiazepine and a low potency opioid.

Anybody with RLS should also be having iron therapy as iron deficiency is the main cause of RLS. Following blood tests for iron deficiency, if all results are normal then

If FERRITIN is below 75 start on an oral iron supplement

If it's between 76 and 100, seek an IV iron infusion.

Anybody with RLS should also identify any factors which may be making their RLS worse - aggravating factors, and if possible eliminate them.

Please see this link

mayoclinicproceedings.org/a...

lbrosa profile image
lbrosa in reply toElffindoe

Thank you for your reply. Actually I do have chronic back/sciatic/leg pain as well as rls and plmd and have had it all for at least 10 years. The latest pain specialist reasoned that they all might be connected and said the spinal injection might help everything but admitted there could not be any guarantee! Thru these years I have tried the dopamine as well as gabapentin, tramadol and many, many other medications. My iron level was checked and over 100 and I have made many lifestyle and eating habit changes with no relief.

Elffindoe profile image
Elffindoe in reply tolbrosa

Thanks for the clarification.

If you had RLS ONLY, which is all I read, then a spinal injection wouldn't seem to be appropriate.

As Jools says, it also seems that the ropinirole may be a problem.

The first treatment for augmentation is to wean off ANY dopamine agonist and replace it with an alpha 2 delta ligand. Either gabapentin or pregabalin.

If that fails, then methadone, oxycodone or buprenorphine.

It may be that the methadone isn't being effective because you're still taking ropinirole.

I'd suggest you make it a priority to wean off ALL dopamine agonists.

I don't wish to question your pain specialist, but as regards your spinal neuropathy, mine is treated with gabapentin.

Both gabapentin and pregabalin are licensed specifically for nerve pain, whilst opioids are more general painkillers.

Further, the usual spinal injection for spinal neuropathy is I believe a steroid. Certainly in the UK. These have to be repeated e.g. about every 3 months. I have never had that, but I did have a course of a NSAID alongside the gabapentin which worked.

However, I'm not a pain specialist. and also, some practices are different in the US.

Munroist profile image
Munroist

Going back to CBT, it might be worth doing some reading yourself. It could be useful, mainly I believe by changing your reaction to your symptoms and illness rather than changing the disease itself. I’m sure it would be better with an experienced practitioner but I did some reading around a while ago and it didn’t seem amazingly complicated so you might be able to achieve some limited benefit through self help or using one of the apps referred to on the page below. I had it recommended for tinnitus .. basically because there are no cures .. and through the reading I did I managed to relax about it a bit and now I notice it less. I’m afraid the only link I have is the NHS page but it’s a start

nhs.uk/mental-health/talkin...

BBMBRB profile image
BBMBRB

I have a similar issue. I have intermittent insomnia and if it gets to 2am then the legs kick in. I find if I take codeine early evening and also when I go to bed I find that I get to sleep better and no rls.

SueJohnson profile image
SueJohnson

Here is the link to the restless legs severity scale aafp.org/afp/2008/0715/2008... Your dose of pregabalin is quit low, equivalent to only 450 mg of gabapentin where 900 mg is usually the lowest effective dose and many of us need a higher dose to control rls. I am on 1500 mg and my restless legs are completely controlled and I sleep like a baby.

Eryl profile image
Eryl

Insomnia with RLS would indicate to me that you may be eating too many carbs especially late in the evenings. this will deplete your Vitamin B1 which is essential for sleep and also raise your blood sugar which will cause inflammation and tenderness in the nerves (your brain is a big bunch of nerves). so they'll be more active. Theresulting high insulin will arso drive the nerve cells to consume the blood sugar as your muscle cells will not be very active while you're lying in bed. Are you snacking on biscuits or cakes in the evenings or having sugary desserts?

Cowbsky profile image
Cowbsky

Hi, Hoochybaby

_ You said: "My big problem is lack is sleep due to insomnia and rls". I was wondering whether you have a good diagnostic for your problem, say, already went for a PSG, etc? That because I see "insomnia" mainly as an unresolved symptom for things such as sleep disorder breathing (SDB), restless legs (RLS), periodic moves while sleeping (PLMS), and/or, eventually, purely emotional issues (including the possibility that insomnia may cause your insomnia!), and so on.

_ Good diagnostic would be the beginning of everything, in my modest opinion and own experience.

_ For some 47 years I used to think I had “insomnia”, until 2017 when a god-sent MD asked me to go for a Polissonagraphy (PSG). Only then things started changing and get better in my life quality. With followed up deep self-education on my three conditions, UARS, RLS, and PLMS, I finally succeeded on having 90% solution for my case, currently without medication, except for eventually going for some 0.4mg of Clonazepam, from time to time.

_ part of that my self-education came from reading books and articles of MD Dr. Barry Krakow (by the way, see, for instance, this newsletter I received from him today) and many other resources.

All the best and good luck

------------------------------------------------------

Barry Krakow, MD

Sep 17

Share

Our 2nd Discussion group comes up in three weeks on Thursday, October 7th at 8 pm Eastern on the topic of Chronic Insomnia.

As an introduction, let’s delve into the singular tendency for insomniacs to worry about their lost sleep. When this worry occurs acutely, say once or twice when a person is going through a difficult period at work, this specific “anxiety-about-sleep” may disappear when the work stressors/issues/conflicts resolve.

In contrast, among a susceptible portion who suffer from acute insomnia, the sleeplessness frequently becomes chronic simply because individuals cannot stop worrying about their lack of sleep. In a nutshell, obsessing about sleep worsens sleep.

This worry takes many forms, including: worrying about being able to fall asleep “on time” so enough sleep will be gained; worrying about being able to fall back asleep after an awakening; worrying about how a next day will play out based on a night’s sleep loss. If you’ve been in this situation, you know it can cascade into far too many dimensions, leading to a place where sleep emerges as the center of your attention. Ultimately, this thinking-feeling activity that often reframes Hamlet’s question, “To sleep or not to sleep” generates the highly maladaptive and dysfunctional state known as “Losing sleep over losing sleep” or LSOLS.

Depending upon how far down the LSOLS path the patient has traveled, it becomes extremely common for prescription sleeping pills to enter into the sleep regimen. The sleeping pills feed the LSOLS cycle, particularly when drugs provide inconsistent benefits, a very common occurrence among chronic insomniacs.

Regrettably, despite the failure of the pills to yield consistent and excellent results, these individuals still see medications as the “answer,” which leads me to ask, “what is the question?” Are you trying to sleep more or better? Are you willing to pay the price for more hours of lesser quality? Is the continuity of your sleep (no awakenings) more important than how you feel in the morning and the rest of the day? What is your level of frustration from the inconsistent results you are currently achieving with medications?

To be continued…

Elffindoe profile image
Elffindoe in reply toCowbsky

Well put!

Sarasota16 profile image
Sarasota16

Could you see a naturopath? Mine practices German functional medicine and has helped me immensely.

Battleground profile image
Battleground

Perhaps you have tried Gabapentin but if not I would recommend it. At 85 suffering from insomnia and RLS for 30years I now have found relief. The answer has been found with Gabapentin in dosage that is strong enough to work. Look it up on line you will see that it is a drug that covers many physical problems that are often not recognized. RLS and Insomnia are only two of them. If you should decide to take it don’t give up on it quickly, finding the right dosage and some early side effects can sometimes keep perspective users from finding success.

Hoochybaby profile image
Hoochybaby in reply toBattleground

Hi I’m 82 and I’ve been on pregabalin for a few years now I believe it’s very similar to gabapentin I take 150 mg each night but doesn’t work for me if I increase the dosage to 300 mg I get heart palpitations so I’ve had to cut back

Mike-tyson profile image
Mike-tyson

I take 300 mg Gabapentin at night and put magnesium cream from Amazon on bottom of my legs before getting into bed. Which has sorted my RLS at the moment. Hope this can help you.

Enery profile image
Enery

Hi hoochySorry about your situation im in the same place.

Tried most of the stuff .

Had my ferritin checked it was down at 27 so gp put me on iron tablets.

Im also taking magnesium cyclate 100mg 2 in the morning and 2 in the evening, 1 of 60mg dhc continus about nine oclock then a zimovane 7.5 around 10.30.

Manage to get 4 or 5 hrs 3 or 4 nights a week.

Do the walking at night some press ups and play with some weights and some solitaire. And reading the bible.

Im 75 and retired so dont have to worry to much about getting up early.

Hope you find something that works for you

I've got my hopes on the iron tabs i'll be pushing for another ferritin test in a month or 2

God Bless

in reply toEnery

Hi Enery, as long as you're taking iron I recommend taking the tablets about an hour before bed on an empty stomach and maybe with some vitamin c if you have it in the house. I would take the full doctor recommended daily dose all at once (at night), not broken up. I like ferrous bisglycinate not ferrous sulfate which is unfortunately what most doctors tell you to buy. The bisglycinate is more bio-available. There is a handful of us on here that get immediate relief from that iron capsule. The relief lasts one night and thus every time you have RLS (which for most is every night) you must take another iron capsule. Good luck and let us know how it goes.

Enery profile image
Enery in reply to

Thanks for that i'll get onto it right away.God Bless you all

in reply toEnery

Not sure if you bought your iron already. This is the smallest size of this brand they have on Amazon - 180 capsules - about 3 months worth, for $16. I have never seen ferrous bis-glycinate in drug stores, only health food stores. The standard iron, recommended by most doctors and available at every drug store ( ferrous sulfate), will be cheaper, but I believe no where near as effective. amazon.com/Solgar-Gentle-Ir...

Enery profile image
Enery in reply to

The tabs i got from the doc was ferrous fumerate 210mg 1 twice a day (approximately 69 mg of elemental iron)Last night I took them both before bed along with my usual stuff and had a good sleep from around 1 to 9.30.

Im Scottish and the thought of wasting anything goes against the grain so I will continue with these and see what happens.

Thanks for all your help.

God Bless

in reply toEnery

Oh wow, I wasn't expecting you to sleep a full 8 hours??? That's shocking, considering you normally only get four to five hours of sleep a night and some nights barely any. If you're like me, the iron will NEVER fail you. I'm Jewish, so I totally get what you mean about not wasting anything - it's a sin!!!

in reply toEnery

Enery, any more news on the RLS front 🙄

Enery profile image
Enery in reply to

So far so goodI get a little body jerks in the afternoon nap and in the evening when i go to bed

But i have been sleeping 5 or 6 hours a night which is great.

I have been in this situation before when I have tried a new plan and my body seems to get used to it and the rls slowly creeps back.

Anyway things are a lot better now I pray that we can all get something that works for us.

God Bless

in reply toEnery

I don't know that I can accept 5 to 6 hours unless that is all you would sleep even if you didn't have RLS (supposedly Saint Teresa only slept 3 to 4 hours a night). Well, like I said before, when you finish with the iron you have I would replenish with ferrous bisglycinate. If you're in an experimenting mood and are desperate to get to 7 to 8 hours of sleep a night I would purchase a box of "transdermal iron patches" by "PatchMd." I have both the 15mg and 45mg strength iron patches. I would say to start with the 45mg patches and what I would do if I were you (but you are not me so remember that) is I would take one tablet of ferrous fumarate before bed on an empty stomach with vitamin C and put one 45mg patch on. The 45mg patch will release iron into your blood stream very slowly over a period of about 8 hours and may be what you need to carry you thru to 8 hours of RLS-free sleep. The ferrous fumarate tablet provides an initial punch that will rid you of RLS within an hour or so, but then it seems that the fumarate poops out on you after about 5 hours. Well, that's what I would do. That is what I do or I should say what I do when there is still food in my stomach and I'm ready for bed and I'm afraid the iron tablet won't be effective on a full stomach. The contents of your stomach have no effect on a transdermal patch that bypasses your digestive track so that's why I use the patch rather than the pill when my stomach is full. Once again, much luck and keep up the good work and keep us posted every few weeks if you think about it. If not then I will just chalk you up to another nightly iron success story 😅

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Enery in reply to

Sounds like a good planI ,m going to continue with what I have untill it stops working then try the new plan

God Bless

in reply toEnery

You still getting 6 hours a night? Are u happy with that?

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