RLS? PLMD? Myoclonic Jerks? All of the above?

[LAdudePRS]

I am a 69 year old man in the United States. In 2016, I started experiencing leg spasms that would occur when I lie prone or leaned back in my recliner. I first noticed it during the day, but it would soon keep me from falling asleep and staying asleep. I mentioned it to a doctor I was visiting for another issue. He thought I might have RLS and he prescribed pramipexole 0.125mg taken nightly. It almost eliminated the spasms so I could sleep. He then had me start taking a morning dose as well to control the spasms in daytime. I would sometimes experience the spasms in the last couple of hours before my next dose.

When the leg spasms first began, I was going through a few months of physical therapy for lower spine pain. (This was after I'd had a few steroid injections in my spine.) The therapy included strapping my hips to a traction table that would separate at the waist and pull on my back. I remember asking one of the PTs if the traction could have caused the leg spasms and he didn't think so. I have always associated the onset of my spasms with that traction, though, as I describe below, doctors have been unable to find any issues that might cause the spams. The doctor who prescribed the pramipexole also doubted the traction as being the cause.

That dosage remained effective for about 6 years. Then the spasms began to occur even with the medication, and they were more intense and occurred every 30 seconds and sometimes as much as every 10 seconds. The only way I could stop the spasms was to stand up, and then they might continue for several seconds. It became difficult to drive a car or do anything that required sitting for more than a few minutes. In early 2023, I asked my nurse practitioner if I could double the dosage to 0.25mg twice daily and she agreed. That almost eliminated the spasms again.

I also developed insomnia, also starting in 2016, when we had a tragedy in our family. I would awaken in the middle of the night and not be able to fall back asleep for an hour or two. Then I would wake up around 5:00 AM without using an alarm. I don't remember the progression, but when I asked to double the pramipexole in 2023, I was suffering from sleep deprivation. I could fall asleep standing up.

I described my leg spasms to the nurse practitioner. From what I had read, I did not think I was experiencing RLS. I did not experience a restlessness in my legs. They would just spasm even when I tried to keep them from it. I could anticipate the onset of spasms because I would feel a tightness or tension in my lower back and butt. I should add that I had already sought treatment from a chiropractor and an acupuncturist. The acupuncturist was present when I started having the spasms lying on her table. She said they were unlike anything she had seen.

My nurse practitioner referred me to an orthopedic spine surgeon and to a sleep doctor. The spine surgeon had an MRI done. He noted the disc degenerative disease that had been diagnosed several years prior, as well as scoliosis, arthritis, and stenosis, but nothing that he thought would cause leg spasms. He did refer me to physical therapy to help with pain and immobility issues.

The sleep doctor diagnosed mild apnea after an at-home sleep study and I began using a CPAP machine. She also tried various medications to help me sleep before settling on temazepam. After trying lower doses, I'm now taking 30mg per night. That usually gets me 4-5 hours of sleep before I awaken and can't go back to sleep. I usually try to take a nap early in the morning, and sometimes mid-morning, and even in the afternoon if I don't have any activity to keep me busy and awake. She also diagnosed me with RLS and possible "myoclonic jerks".

I've abandoned the CPAP. Because I drool so much during my sleep, I was only using a "nose pillow", but the air would flow into my nose and out my mouth. So they gave me a strap to wrap around my head to keep my mouth closed, but that caused me jaw pain and aching teeth. Then I tried surgical tape to keep my lips closed, but my cheeks would fill with air and the drool would collect between the tape and my lips and was irritating. It got to the point I would rip the CPAP mask of in my sleep without realizing it.

The sleep doctor also referred me to a neurologist who did some unpleasant electrified needle tests but he found nothing that would cause leg spasms.

I've read that insomnia can be a side-effect of pramipexole, but the sleep doctor says it's not. The insomnia has caused me to alter my morning routine so I can no longer attend daily Mass or go to the gym early each morning. I have to be cautious about driving, usually taking a nap if I have to drive more than 20 minutes. I have days when I'm dragging, but I try to at least walk a few miles. It's just harder to motivate myself when I'm so tired.

I had been prescribed gabapentin within the last year for back pain, but it caused depression. I had also tried pregabalin for back pain, but it caused swelling in my lower extremities (and didn't help with pain.)

Another piece of the puzzle: When we'd vacation growing up, my dad would sleep on the bed with us kids. He would awaken me at night and tell me my leg was jumping and keeping him awake. I was completely unaware of it. My wife has told me for years that my legs do that, but it usually settles down after some time. Even when I take the pramipexole, she says my legs will still jump about.

My reasons for questioning the RLS diagnosis:

1) I don't have an urge to move my legs. They just jerk even if I try to prevent them from it. Before the spasms would start, I usually felt a slight tightness in my lower back and buttocks area.

2) The spasms were the same day or night, usually occurring within 30 minutes of sitting, reclining or lying down. When the spasms started in 2016, I'm fairly sure they didn't affect me ealier in the day or when sitting upright. I remember having to drive over an hour to and from work and having no issues with spasms. When the pramipexole quit providing relief in 2022, the spasms would start any time I was sitting, reclining or lying down for 10 or 15 minutes. Maybe the pramipexole was causing augmentation?

3) The spasms stopped within a minute of standing up. I didn't have to walk or stretch to relieve the spasms or the tight feeling.

I am afraid the pramipexole will stop working again and would like to see if there is some other solution. It sometimes doesn't seem to be working as well during my daytime naps which only last about 15-20 minutes and I'll awaken from having spasms. Occasionally I'll wake up at night and a jerking leg will keep me awake . Also, I sometimes get that tight feeling on my backside when I sit down, especially after a walk. It feels like the leg spams might start, but they don't. After a few minutes, that tight feeling subsides.

My sleep doctor said she could increase the pramipexole dosage, but after reading this forum, I'm afraid that will make the problem worse. But since I'm already deep into pramipexole, I don't know where to go from here.

Lab test from Feb. 2023 showed:

Ferritin level was 63.4 ng/mL.

Total Iron Binding Capacity was 302 ug/dL.

Iron Saturation was 24% (is this the same as ferritin saturation?)

Thanks for reading this!

[SueJohnson]

Yes you have PLMD as well as PLMS. You don't have RLS. They are both treated the same way which is why the pramipexole works. But you don't want to take that as up to 70% of people will suffer augmentation on it according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged. And at least one expert believes everyone will.

And actually you are already experiencing augmentation since at .5 mg you are already at the maximum dosage.

Substitute PLMD and PLMS for RLS in the following since they are treated the same way. This applies to the Mayo Algorithm too.

First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.

To come off pramipexole reduce by half of a .125 tablet (ask for a prescription of these if needed) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed but they are not up-to-date on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.)

I know you tried gabapentin and it caused depression but that can be handled by taking Wellbutrin or Trazodone. And the swelling on your lower legs on pregabalin unless it is really bothersome can be ignored. I have it.

The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After you are off pramipexole for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Your ferritin is low . You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45 which yours is. Although there is less evidence that this helps PLMD or PLMS it can't hurt to raise it.

If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it also helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.

Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.

If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.

Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

[SueJohnson]

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[LAdudePRS in reply to SueJohnson]

Thanks for the helpful information, Sue. I will bring the Mayo Clinic document to my doctor. I really dread getting off the pramipexole because it does work well - for now. But I know there will come a time when it won't.

Here are the meds and supplements I take:

• Temazepam – 30 mg at bedtime for insomnia

• Pramipexole – 0.25 mg twice daily

• Tamsulosin - 0.4 mg one time daily for urinary problem (BPH)

• Rosuvastatin – 20 mg one time daily

• Ramipril – 2.5 mg one time daily

• Meloxicam - 15mg daily

• Vitamin D - 5000 UNT daily

• Vitamin C – 500 mg

• Tylenol – 1000 mg – taken occasionally for back pain

• Flonase - 50 mcg/spray - as needed

• Cetrizine HCL - 10 mg, one time daily during allergy season

• Sudafed - as needed (rarely)

• Loperamide HCL - anti-diarrheal - as needed (rarely)

• Probiotic (Philips Colon Health) – 1 capsule daily when my gut seems a little off

[LAdudePRS in reply to LAdudePRS]

I forgot to add that I am taking regular pramipexole, not extended or slow release.

[SueJohnson in reply to LAdudePRS]

The only one that is a problem is the Rosuvastatin. All statins make RLS worse for most.

Nexlizet (Nustendi) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) reduces cholesterol although it doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS. And then there are Triglide (Fenofibrate, Fibricor, Lipantil, Lipofen, Supralip) and Bezafibrate (Bezalip) which are not statins which seem safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.

If you end up taking gabapentin or pregabalin you should be closely monitored as it can raise the bad LDL and lower the good HDL.

[Munroist]

There is an acknowledged connection between nerve damage (neuropathy) and RLS. As I've said in another post today I suspect that when nerves are damaged or excited they are more vulnerable to RLS. To me your situation sounds like significant nerve damage or injury caused by your back problems which may have triggered a tendency for RLS. My thinking is:

1. You clearly have some significant back issues which would be surprising if they hadn't involved nerve damage and the treatment you describe e.g. steroid injections and traction are normally aimed at relieving nerve pain. Additionally you describe a list of spine conditions from your MRI which could easily involve entrapment or aggravation of nerves. I was told my discs abut my spinal cord but that it shouldn't be an issue as there was lots of room in the spine so they shouldn't get trapped but I've had several year of moderate back issues, severe at the start. MRIs are done when you are lying down and still, so optimum conditions for your back and not when you are upright and moving.

2. The fact that pramipexole helps you would indicate that you have some sort of RLS. Getting relief from a dopamine agonist is a common confirmation test for RLS. Daytime RLS is unusual but other factors are normal e.g. when you are at rest, and the night time movements. For a few years I was told I "cycled" at night when I was asleep but it didn't wake me and my RLS only emerged after my serious back issue a few years later. I suspect I've always been susceptible to it but it took age and an injury for it to emerge. My "cycling" was normally after intense exercise which is something that I still get.

This probably doesn't help much with where to go next. You have tried pregabalin and gabapentin which often help both neuropathy and RLS and they didn't suite you. I also tried pregabalin but didn't like the slight brain fog and it didn't stop the neuropathic sensation, it just dulled it and I didn't care, plus I don't recall it helping with RLS. At this stage the normal medication recommendation is to go for a low dose opioid like buprenorphine which isn't always easy to obtain. You will see many other posts about this and you can read about it in the Mayo Clinic Algorithm which Sue has sent you.

There are always alternatives which may help although in your severe case I suspect it may be minimal, such as iron therapy (supplements or infusions), changing diet to remove triggers and therapy or work on your back to avoid any more pressure or issues with the nerves.

[SueJohnson in reply to Munroist]

But he has no urge to move and his symptoms are relieved by standing up not walking or stretching and his symptoms don't usually occur in the evening and are dormant in the morning - three of the four criteria for RLS. Remember PLMD is treated the same way as RLS so it is no wonder pramipexole helped him.

You are certainly right that he may also have nerve damage.

[Munroist in reply to SueJohnson]

Hi Sue. Thanks for the feedback. Rereading the original post LAdude got spasms which stopped him lying down and going to sleep, basically when he was at rest so I’d say it was evenings. He describes his spasm as an involuntary movement rather than an urge to move but I think they are possibly opposite ends of the same spectrum - basically he has to move. Standing is movement. I can often relieve my RLS by standing, presumably because even that uses a reasonable number of muscles and motor co-ordination to stay upright. I could be wrong but it feels like a form of RLS and if we are clearer about the PLMS then as we know they frequently go together. Personally I don’t separate mine. I twitch when I’m asleep and occasionally when I’m awake and it’s the same feeling. I do agree we need to keep referring back to the definition but I feel this is close enough and the response to pramipexole is a strong diagnostic. I’d be open to other explanations though if they fitted better.

[LAdudePRS in reply to Munroist]

Thanks for your input, Munroist. I've long thought it was nerve damage since the "awake" spasms started while I was going through a series of traction sessions.

[Joolsg]

Spinal cord damage is a major cause of RLS. It does sound as if you have nerve damage, neuropathy and RLS. The fact Pramipexole initially stopped the 'spasms' is a useful diagnostic tool to confirm RLS, even though you don't appear to have the 'urge to move'.The leg spasms or jerks are the result of augmentation. Caused by Pramipexole.

As SueJohnson says, at least one top RLS experts believes EVERYONE taking Pramipexole and similar dopamine agonists WILL experience drug induced worsening of RLS, known as Augmentation.

Follow SueJohnson advice to get off Pramipexole.

Also file a side effect report via FDA as they need to realise the scale of the problem and ban Pramipexole.

It also causes impulse Control Disorder, and many people have lost jobs, homes, marriages to gambling and overspending on these drugs.

Also join rls.org in the USA to help fund research and access their useful resources and information.

Also read Andy Berkowski's site at relacs.com and watch his videos explaining augmentation.

relacshealth.com/

[LAdudePRS in reply to Joolsg]

Thanks, Joolsg.

[SueJohnson]

As Munroist said you also have neuropathy and gabapentin and pregabalin are used for that. You said they didn't help. How much did you take and for how long?

The usual effective dose for gabapentin is 900 mg to 3600 mg split in 3 doses or 150 mg to 600 mg of pregabalin again split in 3 doses.

If 3600 mg of gabapentin or 600 mg of pregabalin taken for at least 3 weeks didn't work then a low dose opioid is your next step. I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed one of the others be sure you are given enough to take them that often.

And the 3600 mg or 600 mg if they were taken while you were taking pramipexole than it wouldn't work for your RLS or PLMD although it would work for your neuropathy.

[707twitcher in reply to SueJohnson]

Wouldn’t the fact that he was also on Pramipexole mean that the gaba’s were not likely to work?

[SueJohnson in reply to 707twitcher]

Certainly true - I will add to my answer. Thanks.

[LAdudePRS in reply to SueJohnson]

I only took the gabapentin and pregabalin for a few weeks sometime in the last year. I don't recall the dosage. They had been prescribed for back pain and didn't seem to reduce that any. I had been on the increased dose of pramipexole so I couldn't tell if the gaba meds had any effect on the spasms.

[SueJohnson in reply to LAdudePRS]

That's good sign it means once you are off pramipexole they may work.

[SueJohnson]

If you live in LA as your name implies I recommend you see Dr Clete Kushida at Stanford. He is the Director of the Quality Care Center one of 12 in the country and treats RLS and PLMD but is also a neurologist so can diagnose and treat neuropathy and will prescribe low dose opioids if needed which many doctors won't.

Stanford Sleep Medicine Center450 Broadway Street Pavilion B, 2nd Floor, MC 5730 Redwood City, CA 94063 Phone: [phone]

The Quality Care Centers have world renowned experts in the treatment of RLS and PLMD. You can't do better.

[LAdudePRS in reply to SueJohnson]

Sorry - my name is misleading. I live in the state of Louisiana, abbreviated as "LA" by the postal service. I didn't choose wisely... 🙂

[DicCarlson]

Whew - that's a tough one! I would agree with Sue as to it being PLMD rather than classic RLS. Here is a good article/study on iron status and PLMD...

"The pathogenesis of PLMD is not clearly defined. Previous studies suspected cortical or subcortical involvement in patients with PLMS. However, recent studies favor the spinal cord location as a movement generator due to the similarity clinically to the spinal flexor withdrawal reflex. The hyperexcitability of spinal flexor pathways, especially during NREM sleep, could link to increased limb movements in sleep. Dopamine deficiency could be an underlying factor in triggering these pathways."

ncbi.nlm.nih.gov/books/NBK5....

[LAdudePRS in reply to DicCarlson]

Thank you!

[Eryl]

It is well known that steroids increase blood sugar. Blood sugar and the resultin high insulin is also known to trigger RLS High blod sugar causes inflammation thouought the body, often resticting airways which is probably why you have sleep apnea. High blood sugar is most commonly the result of eting too much carbohydrate (sugars and starches).

[LAdudePRS in reply to Eryl]

Thanks, Eryl. The effect of the steroids on blood sugar - would that be a temporary effect?

[Eryl in reply to LAdudePRS]

I haven't studied it any further, you'd have to google it to see how long it persists after stoping the treatment.