HELP ME! WWE all night! My arms and legs are waving and slapping all night long. I tear the bed apart, beat myself and my husband. HELP

I have RLS with periodic limb movements. (145+/hour overnight). I was taking Clonazepam with THE best results after trials with Soma ( & at least 2 other muscle relaxants), the 2 meds that are specifically for RLS (? names escape me) a patch maybe, a couple of antidepressants in the amitriptyline category, and a couple in the SSRI family. I had a Pulmonary physician at the time I was on the Clonazepam and I was diagnosed with the Narcolepsy. I was then ultimately prescribed Xyrem for sleep AND I stayed on the Clonazepam. I did that for close to 4 years anyhow. Now I have moved - fast forward and the new physician is not willing to do the same for fear of respiratory failure. After 6 months I'm miserable and I'm tired of not knowing what the night may have in store. I beat - yes beat up myself and my husband- each & every night. Granted no marks most nights, but my muscles are SO TIGHT ALL NIGHT! I wake up needing a massage, and with spasms. This is no way to live. HELP SUGGESTIONS PLEASE

[Hidden]

Firstly, if you're still taking any antidepressant, any tricyclic antidepressant like amitriptyline or any SSRI antidepressant you should stop.

Both these classes of antidepressants will be make your RLS/PLM worse!

You must not stop these cold turkey however, you must wean off them slowly reducing the dose over 6 to 8 weeks depending on the dose.

Clonazepam shouldn't really be used long term particularly because it's effect will have worn off.

If you take any "meds that are specifically for RLS" it is REALLY important that you know their names!

A "patch maybe" could be the Neupro patch.

If you're still taking any RLS meds i.e. especially pramipexole, (Mirapex), ropinirole (Requip) or rotigotine (Neupro), then it is a good idea to stop these because they may be making your RLS worse. This is known as "augmentation", and it's caused by all these dopamine agonists, (DAs).

Again you must NOT stop these cold turkey either. If this is the case, seek further information on here how to wean off DAs.

The alternative meds to DAs are gabapentin, (Neurontin), gabapentin enacarbil (Horizant) or pregabalin, (Lyrica).

One of these may be effective for your RLS, but unfortunately as you apparently have respiratory condition, it is risky to take one of these.

The remaining class of meds known to be effective for RLS are the opiates, but again apart from the difficulty with getting a prescription, these also are risky with your respiratory condition.

However, your doctor may agree to either of these alternatives, on a low dose and under strict supervision.

If you're NOT currently taking a DA, haven't for a while and have never suffered augmentation, then I suggest you could take a low dose of pramipexole, BUT take the extended release version.

One thing you can do is check there is nothing making your RL/PLM worse.

Check ALL medications you're taking. The following all make RLS worse.

Tricyclic and SSRI antidepressants.

Proton pump and H2 inhibitor antacids ( anything ending in "prazole", ranitidine)

Anti-nauseas meds especially those for gastric reflux.

Beta blockers.

Antihistamines.

Some.statins.

Alcohol, refined sugar and caffeine can all make your RLS worse.

I also suggest you are tested for iron deficiency anaemia and Brain iron deficiency (BID) Both can cause RLS/PLM. BID can exist even in the absence of anaemia. Hence you need your hemoglobin, serum iron, transferrin and ferritin levels checked.

For RLS, ferritin is ideally at least 100ng/mL. This is NOT normal, you need to know the number! As low as 12ng/mL is considered normal.

Low iron is a MAJOR factor in RLS.

I would also suggest you get your vitamin B 12 checked, especially if you're taking a prazole. Vitamin D and potassium levels are also a factor if you have kidney disease or taking a diuretic, (water tablet).

Hopefully you've been tested for diabetes and thyroid dysfunction. Both can affect RLS.

Keep a food diary to see if there is any connection bewteen what you eat and how bad your symptoms are.

That's rather a lot to take in. You can get more information here if you need it.

Remember that a pulmonary specialist is not a RLS specialist.

I hope this helps.

[Hidden in reply to Hidden]

WOW. Thanks. That is a bunch of information to absorb. Yes I did take the Mirapex and Requip. I'm on Neupro now but up to 8mg/24hr. Just saw 3mg/24hr is the top for RLS. Yes I'm on Dexilant and Ranitidine for terrible reflux but they have done 3 upper scopes over 2 1/2 years and say surgery not option. I'm on Wellbutrin no other antidepressant. Meds include an Zyrtec but I have taken for years on & off. No alcohol due to Xyrem and I don't have any respiratory problems but it is the Xyrem that bothers the Neurologist I see, as far as continuing the Clonazepam. The dosage was staying on a level dose, yes I know that should not happen. But it was. I just had all of the lab work mentioned and have been checked minimum yearly with all of them. Caffeine intake is 1 soda per day usually prior to 3 PM.

THANK YOU for taking time out of your day to answer. If my answers help, I'd sure love to hear your thoughts. 💜

[Hidden in reply to Hidden]

You are probably suffering augmentation because of the massive amount of Neupro you're taking.

I realise that it's counter-intuitive, but in order to eventually reduce your symptoms you will have to reduce and stop the Neupro.

You need to do this slowly, otherwise you will have horrendous withdrawal symptoms. This will be a bit complicated.

You may find you can reduce it to about 2 mg relatively quickly, but it will get harder after that. It's only a suggestion but reducing it in steps of 1mg from 8 to 2 mg might be OK. Then I suggest steps of 0.5 mg from 2 mg to zero. This may mean having some 2 mg and 1 mg patches. To get 0.5mg cut a 1 mg patch in half.

It's up to you how long beteeen each reduction, but I'd say at least 1 to 2 weeks. Longer if withdrawal symptoms are bad.

Withdrawal symptoms can be a worsening of symptoms!

They can also include, anxiety, panic, depression.

BEFORE you start reducing the Neupro, if you do NOT have a respiratory problem, then I suggest you start on either gabapentin or pregabalin. This will help reduce your symptoms. It will replace the Neupro when you've stopped taking that. These two take about 4 weeks to start working and for gabapentin you need at least 900mg. Starting dose is 300mg building up by 100mg a day, (or 300mg every 3 days).

Wellbutrin is great fir RLS.

Both Dexilant and Ranitidine make RLS worse. Dexilant particularly causes malabsorption of iron and vitamin B12. Iron deficiency as a result of this malabsorption may be a significant factor in your symptoms. Proton pump inhibitors, like Dexilant can cause RLS. Vitamin B12 deficiency can also be a factor in RLS, not to mention "macrocytic" anaemia.

If you could have these two tested. The important test for iron in RLS is ferritin.

No point in taking a B12 oral supplement, the Dexilant may prevent it being absorbed. There is however an oral spray which is directly aborbed through the mucus membrane in your mouth.

There is an FDA report that Zyrtec can cause RLS.

Xyrem appears to be OK for restless legs, but if you take gabapentin, you will have to be monitored for respiratory depression. Hopefully your sleep studies showed no sleep apnoea?

I'm afraid in order to get your awful symptoms under control I'm afraid it's going to be difficult.

Your largest problem would seem to be augmentation due to the Neupro and if there's only one thing you do, it must be to reduce this.

Your doctors may not be familiar with treating RL/PLM so you need to be informed yourself.

Here's some links to start with.

sleepreviewmag.com/uncatego...

uptodate.com/contents/treat...

I see SWJW12 also has some good suggestions.

Please also note that not all the suggestions you get on here are going to be helpful or accurate. Some I've seen can be harmful.

Always check up on any information anybody posts or anyone sends you by private message. Check with information on this site and check with your doctor.

[Graham3196]

I have sent some information to you by private message

[Hidden in reply to Graham3196]

If you have some good information which might help this member it would be great if you posted it publically so that other members might benefit from it.

[Graham3196 in reply to Hidden]

Thanks for your comment. I publish it at irregular intervals in a post but its very big and I think most other people would complain about me posting something so big all the time. I'm sure you have seen it all before but I will send you a copy and perhaps tidy it up a bit to make it worthy of posting. Perhaps a pretty version that is up to date could be an outcome of the Covid-19 shutdown. I might have a lot of spare time in the near future perhaps December if we are lucky. December seems so far away at the moment with our government proving themselves unable to manage this plague that attacks us. By December RLS might not matter any more

[Hidden in reply to Graham3196]

What a dilemma! I hope RLS does still matter in December, because it will mean we've survived.

On the other hand if it still matters then it still means we're afflicted by it.

Maybe in trying to find a cure for the virus they'll find a cure for RLS.

However, as long as I can still breathe, I'm not holding my breath.

[Hidden]

Hello. I'm so sorry to read if your situation! I went through an augmentation period that lasted wayyyy too long. I was up all night every night going down my list of remedies. It was a very traumatic time for me. You are so right when you say this is no way to live!! And you are also so right about not knowing what the night has in store!! I became scared and highly anxious every time bedtime rolled around.

Here is a list of natural remedies that I have. Others have tried some of these as well either to no avail or they don't like the feeling of it. Some nights my tried and true methods don't even work, which I put down to the intensity of my attack (thd worse the attack the less things work). The inconsistency sure is frustrating!!

Here's my list. I hope you can find something that works for you.

-Support (compression) stockings for the tight feeling. If you have it in your arms as well (I have it in my right), there are compression sleeves.

-Massaging magnesium oil on my legs. This is know to be itchy, which I've read is a sign that the magnesium is being absorbed.

-"Relaxing Leg Cream" by Magnilife. This can be ordered from Amazon.

-Jet-spraying very warm water onto every inch of the bothersome limbs. While I prefer warm water, others prefer cold.

-If you have a bathtub, soaking in Epsom salts can help relax the muscles. Again, this can be itchy. I've heard that the max time recommended for soaking in these is 12 minutes.

-a heated massager

I've also discovered that, for me, there is a direct correlation between a 75+ ferritin level and controlled RLS. My RLS can be Hell, but thankfully it is pretty much controlled at the moment. If it starts going downhill again though, I know what to have checked first!

I wish you all the best in your search for answers!! This syndrome is devilish. When bad, it becomes my private Hell.

Hope this helps! Stay strong!

[Heatherlss in reply to Hidden]

Hi,

What do you take for your symptoms?

[Hidden in reply to Heatherlss]

Hi Heatherlss!

I take 4mg neupro and 75mg Lyrica

[Hidden in reply to Heatherlss]

Neupro

[Tapir]

I homed in on your tight muscles. I have found magnesium citrate (100mg) to be beneficial in this regard. Also, try increasing your potassium levels by having a banana.

I know nothing about the various drug combinations that you are reporting.

[bill54321]

Sorry for your physical night mare. Look up a new word "Hyponagognia" (just before sleep) "Hypnopompic" (immediately waking up") Theser are the critical times of what I call Lighting bolt ankle -Knee jerks with Pain. If you eat and start to goi nto Hyponagogic dosing stage, regard less of sleep surface or color, you will jerk. Waking up, the Hypnopompic stage may not be as strong and you get the soft beginning jerks.(not in your head but physical.) To incurr nerve repair and use the anticonvulsive element, take two 300 mg of neuritine Gabipintine(Not the 600 horizon gabipintine.) at night. Specific for the jerks use 1 of .5 ropinrole 1 hour before meals at noon and 5:00pm. At 9:00 PM take 2 of the .5 ropiniroles at the same time as your 2 gabipintine. This will get you to about 5:00 in the morning. The Hypnopomic kicks are soft. Get up and walk to the bath room. This tends to wake you up and stop the jerks. Go back to sleep for an hr or two. Don't take any more ropinole until the .5mg before noon meal. If you have other pain(back) get off the stong dope and reduce to 3 tramadol 50mg. a day Please note, the total ropinirole is 2mg( .5 mg noon and evening meals and 2 0f .5 mg at night. Keep this routine with out increases or you eventially will have to go to some thing stronger. Use a strong heath magnesium on periods of increased night jerks(rub the gel into foot and calf.) Walk the early morning jerk off. DON'T USE SLEEPING PILLS. GET OFF HYDROCORDONE OR STRONGER MEDICATION. keep your gabipintin to the neuritine 300 capsules. Dont use strong 600 Horizon gabipintine with ropinirole.(Note: I had to develop this routine myself because every one wanted to say it was in my head. You will only benefit from this routine becaused I am a PT and I researched it myself Call it the GOOD LEG MONLUX PROTOCOL. Any reasonable neurologist who does not have a love affair with the parrot routines, will appove of this, The American Academy of Sleep Disorders still calls our jerks a night time sleep need to move. I went beyound that . Use the above and regain your peace of mind. My6 Movement Nerologist in Santa Fe approved of what I was doing. Note. BE PRO_ACTIVE FOR YOURSELF DEMAND TO USE THIS TECHNIQUE. I have my brainscans next week(DEMANDED IT) I have my ENDOCRONOLOGIST session in a week(DEMANDED IT). Study the brain barrier. Good luck, OH! heep off the strong narcotic. You will never be 100% normal but you will not be insane with my protocol Bill54321

[Martyrtothecause]

I'm afraid that I'm not going to be of any help to you. Compared with so many RLS sufferers I am a very minor case. I can go 7 to 10 days/nights with only very little or no discomfort at all . Then the RLS kicks in big time for 2 or 3 nights when I'm unable to relax and need to remain on my feet and moving. By the 3rd night I'm so exhausted I do manage to sleep, but, according to my wife, thrash about all night. Then everything settles down again for a week or so. Some years ago I would have classified myself a major sufferer, That's when I was prescribed the Neupro 2mg/24hr transdermal patch. A couple of years ago the nightly attacks started to decline to the present level. I've not decreased or changed the medication for fear of my RLS worsening again.

The replies you've received so far are from people far more knowledgeable than me, with some really good advice being offered. I can only hope that the information being offered brings some benefits.

[Hopeless100]

Hello BooBooV, I thnk you have been on so many affecting drugs that there is no real baseline to work from. I you could perhaps, restrict your medication to essential only, for say, 7 days, then try one of them that you think may work, then repeat with another if you have no luck.Even if you find one, it may only last a while before the side effects take over.

I find ,as a last resort, if I put three of four pillows in a stack then belly flop on to it, so my legs and arms drape over , and can flail and sometimes sleep while flailing. I can sleep for short periods.

[Midnight-Blue]

I am so sorry you are going through this with RLS. I have it also and when my leg (s) tighten up I try walking on tip-toes, pointing my toes, working the calf muscles, walking around the house till I’m so exhausted! Some recommend a hot bath (I have 2 showers, no bathtubs!) I wish there was a magic pill for us but so far there isn’t & if you’re like me I don’t suffer well quietly!