anxiety at night

[Jenevewill]

does anyone else get anxious for night time. I feel like I anxiously wait for the creepy crawling feeling to begin so I don’t sleep before because I’m anxious about it.

[ziggypiggy]

I think most of us do. My RLS is controlled fairly well with opiods and i still have anxiety wondering if this will be one of those nights where the symptoms break through. Heck, i still have instrusive haunting thoughts remembering my teenage years and the endless sleepless nights dealing with RLS having no idea what it was or what was going on.

[Madlegs1]

Stress is a major factor in RLS.

I find meditation is a big help.

There is a good app that I find useul. "Insight timer"

It has loads of meditations dealing with stress.

And it's free. You can pay for more stuff, but not necessary.

[DicCarlson in reply to Madlegs1]

Link here... insighttimer.com/

[Madlegs1 in reply to DicCarlson]

Thanks. That's the one.👍

[Joolsg]

I used to dread night time, knowing I would be awoken two or three times with RLS.However, since I found the right medication for me, I know it works 24/7 and so that dread has gone.

Stress can be a trigger, but if you follow the Mayo Clinic Algorithm and find the right solution /treatment, your RLS should be controlled.

You can try the no med routes of trying to identify food and drink triggers, try magnesium at night, try a device like a hammer massager or therapulse. Yoga and meditation may help. But if that fails :

1. Ensure serum ferritin is above 100, preferably 200 via pills/infusions.

2. Safely replace trigger meds ( anti depressants, sedating anti histamines, statins, beta blockers, PPI meds).

3. If 1 & 2 don't help, start pregabalin or gabapentin at night only.

4. If 3 doesn't work, start a long half life, low dose opioid.

[SwimLyn in reply to Joolsg]

Have just taken my first Pramipexole tablet (0.088mg) after all my natural self help methods have failed & its my 5th night without sleep.Had specialist hsp appointment today & had long discussion about my reluctance in taking them after reading all the negative comments on this forum BUT my iron tests were fine - ferritin level 158 & awaiting neurologist appointment which will be sometime in 2024 giving the waiting list !

I agreed to take them ONLY when an episode arose not on a nightly basis just to see if works as doesn't seem to be any other treatment @ moment that can be offered so had to concede to try.

It's been half hour now since taking it & 2am in morning & can feel a decrease in muscle surges already so watch this space ....

[Joolsg in reply to SwimLyn]

I totally understand your need for relief.As your serum ferritin is 158, raising it above 200 might help, or it might not.

I just wish your GP had given you the option to take pregabalin.

Pramipexole WILL cause worsening of RLS. It's just a matter of time. I believe the top RLS expert, Dr Christopher Earley who confirms everyone will find their RLS worsens severely on dopamine agonists, including Pramipexole.

Getting off these drugs is hellish and more difficult as you age. Recently one member died as a result of a fall trying to walk off severe augmentation. Her neurologist had no idea how to get her off Pramipexole.

So, it's up to you, but most members of this forum would advise you not to take the Pramipexole and to start pregabalin instead. Average dose is 150-200mg taken at night and it takes 3 weeks to be fully effective.

Alternatively a long half life opioid like Buprenorphine is very effective.

I suggest you read all posts headed Pramipexole or Ropinirole and you'll see worsening RLS and gambling/overspending are common.

Did this doctor clearly warn you about Impulse Control Disorder? If not, that is negligence and you can bring legal action against him if you develop gambling, compulsive shopping, eating or obsessive behaviour.

People have lost tens of thousands of pounds, homes, marriages and liberty because of these drugs.

So do please research extensively.

[SwimLyn in reply to Joolsg]

Thank you so much for these constructive comments ,& no she didn't mention these type of side effects but left it to me as to whether or not to take it as & when I have an episode just to see if works or not .

I won't take it again even though the one time I have it did seem to do the trick but will contact her again & ask for pregabalin if it seems the better choice ...

[Joolsg in reply to SwimLyn]

I suggest you tell your GP how serious these drugs are. She will not have been taught ANYTHING about RLS or the terrible dangers of dopamine agonists at medical school or during GP training.Show her the Mayo Clinic Algorithm, written by the top world RLS experts. And the article on the dangers of augmentation. RLS-UK charity follows this rather than outdated NICE and NHS practice.

mayoclinicproceedings.org/a...

sleepreviewmag.com/sleep-tr...

She should be aware that she can be sued in court for negligence if you develop Impulse Control Disorder. And it's common. I spoke to Leigh Day solicitors last week about this and she has represented hundreds of patients on dopamine agonists against GPs and neurologists. Successfully.

Show your GP the Kennedy case report below and hopefully she will educate herself and her fellow GPs. That is one way we can stop GPs prescribing these drugs. Money ( or loss of it) and threat of negligence, talks louder than patient suffering.

Just look at the leaflet enclosed with the Pramipexole medication. It now contains a clear warning about Impulse Control Disorder. That was put there after Leigh Day successfully sued GSK, Pfizer and other drug companies on behalf of patients who had lost tens of thousands of pound, their homes and marriages because of gambling and overspending etc. Big pharma know very quickly how to protect themselves from legal action.

ukhealthcarelawblog.co.uk/a...

[SwimLyn]

Oh yes, absolutely it's a self fulfilling prophesy when I go to bed wondering how /if I'll get away with it that night !!

[Munroist]

There’s a saying in meditation and probably elsewhere that “What you resist, persists”. That is, if you spend a lot of time worrying about something and trying to wish it away you will end up giving it more focus and it will become a bigger issue for you. I know I’m going to be up on average 3 times every night and awake for a couple of hours but I’ve just learned to go with it, leave myself stuff to do when I’m awake and pacing around and try to minimise the sleep loss by going to bed earlier and getting up later. As a result I don’t worry about it and fall asleep easily. Alongside that most sleep specialists say that if you really can’t sleep you should get up and do something else so that your bed doesn’t become a battleground associated in your mind with poor sleep and restlessness. For me the combination helps. Bed is always something I look forward to because I’m always tired and if I have to get up I don’t resist because I know I’ll be able to get back to sleep in about 30 minutes. I also meditate during the day using the headspace app which helps to reduce the anxiety and accept the situation.

[Jenevewill in reply to Munroist]

Thank you, I do like that saying. It is hard for me to go to bed early and get up late as I have three children to take care of.

[teakabeagle]

I think that should be another diagnostic sign of RLS. It’s hard not to be anxious when your bed is a torture chamber! It adds to a chronic cycle. I worked with a hypnotherapist and started meditating to get relaxed enough to even get into bed. Top that off with the difficulty of getting someone knowledgeable in RLS, being under treated, and not being able to explain the condition to anyone because they don’t get it makes it even worse.

I am so fortunate to have a great sleep doctor who is so knowledgeable and not afraid to order the medication that worked for me. He has looked into the future and developed a plan to eventually rotate through 2-3 different medications to manage augmentation and dependence.

[Lettucenotforget]

Absolutely... that dread of being unable to sleep knowing those pesky maggots wake up for their nightly party! This is my third week taking Gabapentin and, fingers crossed, it seems to be working. I am now able to sleep once more and, boy, am I grateful! Am also taking Magnesium Glycinate available on Amazon.

[Jenevewill in reply to Lettucenotforget]

How much Gabapentin are you taking and did it give you any other side effects ?

[Lettucenotforget in reply to Jenevewill]

I am taking 600mg of Gabapentin 2 hours before bedtime and, fingers crossed, it is controlling my RSL. As regards side effects, I have had some dizziness and feeling kind of spaced out, but I'm also trying to wean myself off Sertraline which is proving to be extremely difficult so my head is all over the place right now but at least I can sleep at night. Hope this helps.