Can’t sleep

[Juliesk1306]

I have had RSL for a lot of years but lately I can sleep. As soon as I get in bed it starts. It has also started in the evenings and spoilt a trip to the cinema and a show I was watching. Any idea on what drugs are best to take

[Hidden]

I am sorry you are having some much new trouble with it. I have had RLS for 40 years and it has been a slow but steady progression to being an almost 24/7 issue. I now get it in my arms and other odd locations such as my back or face (If you thought RLS was hard to describe in the arms and legs, try to describe it in the back or face). Unfortunately, this is the nature of the disease for some people.

My husband just gets it once or twice a month for a short period in his legs. He has asked me how I stand having it so much. Now that I have introduced a component of peripheral neuropathy (imagine your RLS with the added sensation of feeling like you are standing in an inch of water that is scalding the flesh off your feet wherever it touches).

You might want to go back to your sleep medicine doctor and talk to him/her your increase in symptoms. They should be up to the latest and greatest treatments. I no longer go out in the car in the evening nor attend evening functions. due to it. It is not a tremendous inconvenience since we are both homebodies, but it still can be disruptive nonetheless. .

If your physician cannot or will not deal with the increase in symptoms, you may need to look for someone else. Sometimes, sleep/neurology physicians at university teaching hospitals have a better grasp. I also will look for articles from professional journals and take them to my doctor. Make sure it is a real article, not just some contrived crap from someone out to make a buck.

I also save my Nightwalkers magazine from the Restless Legs Foundation to give to my physician. If your physician had to subscribe to every single disease entity foundation's magazine, they would go broke. Most physicians have a thirst for new knowledge and will pick up something to read when they get bored. It is a fairly short and concise read. I will also point out articles and positions to him from there as part of my visits.

I had a review of my CPAP usage last week and was told that I am developing central sleep apnea, rather than obstructive apnea. I may need to go on BIPAP where is I stop breathing because of my brain, the machine will force a breathe on me. They may be why the quality of the sleep I get is not as restful as it could be.

Good luck with dealing with this. I use a couple of axioms to get through this. From Overeaters and Alcoholic Anonymous, "One Day at a Time". I would get discouraged if I looked at this into the future. This allows me to deal with it only for today or sometimes, just for a minute at a time. The other one is "What Cannot be Cured, Must be Endured".

Hope some part of this helps.

Jerold in Citrus Park, FL USA

[Juliesk1306 in reply to Hidden]

Thank you for your words of encouragement. I was up all last night. Decided not to stress but use my time productively. Thanks again for replying x

[AsgardMama]

I have taken Ropinirole for years. Most nights it works. Once in a while it skips.

[Juliesk1306 in reply to AsgardMama]

Thank you I will see about that x

[topaz70]

I have the same problem. So far I haven't found a medication that helps. I started taking magnesium bisglycinate and this has provided some relief. It give me diarrhea for a approximately 10 days. It has slowed down the last few days. I take 200mg in the morning and 600mg at night. The restless leg symptoms are not as severe now and the magnesium helps me fall asleep most nights. I still have the rls sensations during the night but not as bad as it used to be. I rub vicks on my legs before going to bed and when I wake up during the night. Most of the time things will settle down and I can go back to sleep after about an hour. If you decide to try the magnesium I hope this helps you.

[Juliesk1306]

Thank you very much for your advice I will try the magnesium. X

[Hidden]

The standard first line medication, if it's medications you want are either an alpha2 delta ligand (gabapentin or pregabalin), or a dopamine agonist.

, (pramipexole, ropinirole or rotigotine).

The current preferred of these is an alpha 2 delta ligand.

The difference between the two is

The ligands are effective, but not for everyone. You have to be taking one for about a month before it begins to take effect. It has some side effects which can wear off after a few weeks mainly drowsiness and balance problems. Some people gain weight. The ligands can also promote sleep and relieve anxiety. They are also used to relieve nerve pain.

The dopamine agonists (DAs) are possibly more effective, but again not for everyone. They are usually effective when taking the first dose. They have some initial side effects such as drowsiness which can wear off after a few weeks.

Unfortunately, although DAs can help you fall asleep by relieving symptoms they can after some time cause early waking.

DAs are now NOT the preferred first treatment to try because in the longer term, a few years or even only after months they can lose effectiveness and can cause a condition known as "augmentation". This happens in a lot of cases. DAs can also cause, in some people , an Impulse Control Disorder. i.e. gambling addiction, overeating, shopping addiction or hypersexuality.

Many doctors not knowledgeable about RLS, (which apoears to be most of them) may still be prescribing a DA first. They should be avoided if possible. You may need some treatment for the rest of your life. DAs don't last!

A lot of doctors also don't realise that gabapentin or pregabakin can treat RLS, they are licensed for seizures or nerve pain. They are effective for RLS and are prescribed "off label".

Some RLS specialists recommend trying an opiate for RLS. However, it will be difficult to get most doctors to prescribe one for RLS.

BEFORE trying a medication most recommendations suggest trying non pharmaceutical methods first, i.e.unless your RLS is severe.

The first of these is to have your ferritin level tested. Simply put, 50% of RLS sufferers benefit from raising their ferritin level to at least 100ug/L. This is NOT "normal", as normal is anything above 12ug/L. If a Dr tells ypu it's normal, this is not good enough.

The way to increase your ferritin level is by iron supplementation. Either by taking oral iron supplements or by seeking an IV infusion.

It is not easy to raise the ferritin level by taking oral iron, it can take months, or longer. More info on that if you need it.

Some people find supplements of msgnesium, vitamin B12 and D helpful.

There are other medical conditions that can cause RLS, hyperthyroidism, diabetes, kidney failure.

You need to check what other medications you're taking as some things can make make RLS worse or even cause it.

These include -

proton pump inhibitor antacids e.g. anything ending in "prazole"

H2 inhibitor antacids e.g. zantac

Anti-nausea medinicines or pro-kinetics e.g. metoclopramide or domperidone.

Medicines with anti-histamines e.g. allergy relievers or cough medicines.

SSRI or tricyclic antidepressants are particularly bad at making RLS worse

Beta blockers

Alcoho!.

Some people find caffeine makes RLS worse, sime find it helps.

Some people find their diet affects RLS. I'm sfraid I don't know much about this but I do know you should avoid refined sugar and some additives.

You may have to try various things, not everything works for everyone. Some things require a change of lifestyle, diet and self discipline. Some things may take quite a long time to become effective.

The medicines, gabapentin/pregabalin or the DAs do work and work fairly quickly. If your RLS gets very severe, then, it's my opinion, you will need a medicine. Only if severe. A simple judge is that if it affects you every night, uncomfortable symptoms and not getting to sleep.

You could take a medicine temporarily then when other things become effective, try without the medicine. This would HAVE to ne a ligand. It is very difficult to withdraw from a DA. For some, it's impossible.

Here's a link to an overview of RLS treatment by a professor of neurology/RLS specialist which I find quite a good introduction.

uptodate.com/contents/treat...

If you live in the UK I can give you links to the national.guidelines for RLS and national prescrbing guidelines.

A warning, doctors on the whole are quite ignorant about RLS. They may want to prescribe a DA, pramipexole, ropinirole or rotigotine. This is not a good idea.

You will also get other members of this forum recommending these. This means they haven't yet had augmentation or even heard about it. Most doctors haven't heard of it. Members who have had augmentation will tell you how horrendous it is.

You need to inform yourself as much as possible. RLS is mainly about self-management.

I hope this helps, you may get lots of comments, some of them contradictory and some of them misleading. You will have to make your own choice about what to do.

[Juliesk1306]

Thank you your comments are very informative x

[laddy3 in reply to Juliesk1306]

Hi I started RL some time ago Omg it is terrible so sympathies I started googling what was in my meds to see if they affected it and yes some did simple cold remedies my migraine tablets antihistamine tablets anyway I am aware of all this now and careful what I take I got pregabalin and seems to help hope u find something

[Midnight-Blue]

I see I am not alone with this problem! Does RLS bother you at night? So you are unable to sleep?

[YodaDog]

Just want to back up what Manerva said in that before starting on the (serious) medication route, have you blood tested for iron levels first. Somewhere around 60% of RLS sufferers benefit from iron supplementation.

[Sara_2611]

Oh dear apologies for all of the trouble -Oh no!!! what a place for it to start off-in the cinema!!!

Mine tends to start if Ive got my laptop open & Ive got my legs up on the coffee table -balancing my laptop on my lap or if Im sprawled out on the couch with it on my lap

[Juliesk1306 in reply to Sara_2611]

Thank you Sara for your reply yes it puts you off going anywhere. I just try to keep moving 😂

[Lapsedrunner]

With respect, most of us use this to research treatment approaches. Also you posted 2months ago that LDN gave you terrible side effects!

[Hidden]

If by "pages and pages of talk " you're referring to this forum, then perhaps you are being overly dismissive. There are lots of practical suggestions and help offered and there's also emotional support and a bit of humour.

Many people say how grateful they are for these,

To imply that you have the one true solution and apparently just trash everything else isn't helpful either for others or yourself. That's especially when you tried LDN for your IBS, not RLS and had terrible side effects.

[Sara_2611]

its a great idea . i just put balneum cream on & even if it is for skin conditions -it cools mine down

[Hidden]

Unfortunately RLS gets progressively worse with age, I’ve had it since I was age 9. I’ve replied to other people with some useful information which may help you, good luck!

[Juliesk1306]

Hi I have had it all my life too did not know anyone else had it for a long time. My Dad had it too. Thanks for your support

[MumofSam in reply to Juliesk1306]

I’ve also had it my entire life, so it sounds as though there are a few of us on here who have. My parents didn’t have it, nor my grandparents as far as I’m aware, and no-one else in my family does. At one time I thought my son might be suffering from it, but I think that was something else at the time.

I’ve had to give up being med free as it’s got so bad in the last year, getting it not just in my legs but my left arm, neck and lower back when it’s at its worst. So I’ve been on Pregabalin for several weeks now and it seems to be just about controlling it most of the time. At least I’m sleeping much better now.