Agonylegs

[Agonylegs5]

I have suffered with PLMD for years. I took Pramaprixol for 6 years but suddenly the side effects have increased so much I have had to come off them over a period of time. I now am looking at Magnesium and B6, can anybody advise which type of Magnesium to take? Any help is appreciated.

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

Magnesium glycinate is the one usually used.

PLMD is treated the same way as RLS so when I say RLS, just substitute PLMD although your profile says you also have RLS.

Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.

When you see your doctor ask 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. 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%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.

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, oestrogen (estrogen) including HRT, 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.

I see from your profile that you don't want to take any medicine and you can certainly try, but chances are you will end up having to take some. I can certainly understand after you took pramipexole and obviously augmented. They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.

When you decide you need medication ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US). They are now the first line treatment and are nothing like pramipexole and are easy to come off of if need be.

Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1 to 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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 uptodate on it at Https://mayoclinicproceedings.org/a...

[Agonylegs5 in reply to SueJohnson]

Thanks for your reply Sue, this has certainly given me some hope. I was really getting worried but your information has certainly been very very helpful. I didn't even know about Ferritin levels. Somewhere now to start. Thank you so much

[ChrisColumbus]

While I'd love to think that you could go RLS-medication-free, after augmenting on pramipexole you may struggle.As Sue says, your first step is to get your ferritin levels tested and to improve these levels if they are low.

My ferritin levels were always high, and I'd never taken any RLS meds, but I still had moderately severe RLS symptoms.

I was recommended to try magnesium and have been taking at least 400mg a day of magnesium citrate for some years now, since I had it recommended to me by a relative: 600mg a day initially stopped my RLS within days, and 400mg a day (the amount suggested for 200mg tablets on UK packaging) has helped ever since. Magnesium citrate can have a significant laxative effect and some people are very sensitive to it: this is why magnesium (bis)glycinate gets recommended instead - it is much less likely to cause bowel issues and reputedly also helps sleep (although I tried it for a month, and found it slightly less effective than citrate and had no impact on my sleep).

HOWEVER, magnesium is not a universal panacea: it does not help my brother, and until 18 months ago I was still getting quite a lot of breakthrough. I found that I needed to stop statins, cut out diet food and drink containing aspartame, and reduce sugar and caffeine particularly in the evenings. Now I very rarely have RLS.

BUT I'd never augmented on a dopamine agonist: you may find that you need to follow Sue's advice on medication. Good luck!

[Agonylegs5 in reply to ChrisColumbus]

Thanks Chris, you and Sue have given me hope.

[ChrisColumbus]

You haven't completed your profile to show which country you are in? Both RLS-UK (the UK charity for RLS and PLMD) and RLS.org (the US RLS Foundation) have lists of medications to avoid. You should review any prescription drugs or OTC supplements that you are on.

This is the RLS-UK list (if you're in the US brand names may differ):

"A number of medications can make RLS worse. In particular, anti-nausea drugs and sedating antihistamines can block the brain’s dopamine receptors, increasing the symptoms of restless legs. Antidepressants that increase serotonin and antipsychotic medications can also aggravate the condition. Let your doctor know if your restless legs symptoms worsen after you take a new medication. A change in dosage or a change to a different medication may help. Below we have listed a number of medications which our forum users suggested made their RLS worse. Please note that this list is not exhaustive and while we have been advised that they have made RLS symptoms worse for some people, this may not be the case for you.

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In particular, anti nausea drugs and sedating anti histamines can block the brains' dopamine receptors, increasing the symptoms of restless legs. Anything containing pseudoephrine or phenylephrine should be avoided.

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Cold and Flu remedies and Anti-Histamines:

Common culprits include: Night Nurse, Day Nurse, Nytol, Actifed, Avamys, Benadryl (Acrivastine), Chlorphenamine ( Piriton), Contac, Coricidin, Fluticasone, Rhinolast (Azelastine hydrochloride), Sinutab, Sudafed.

Note that many cough syrups may contain antihistamines, especially if they are recommended for cold or flu symptoms. Always try to choose non-drowsy options.

Anti-depressants:

Many people living with RLS also live with depression and consequently are prescribed anti-depression medication. RLS is also common in two conditions that often co-occur with depression: ADHD and PTSD. However some anti-depressants can actually make RLS symptoms worse. If you are prescribed anti-depressants and live with RLS, we recommend you monitor your RLS symptoms to see if your symptoms worsen after starting anti-depressant medication. If so, speak to your medical practitioner to see if you can be prescribed an alternative medication. Trazodone and Bupropion are both RLS safe alternatives.

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Anti-psychotics: Most anti psychotics worsen RLS.

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Selective Serotonin-Reuptake Inhibitors (SSRIs) and Serotonin and Norepineephrine Reuptake Inhibitors (SNRIs):

Citalopram (Cipramil), Duloxetine (Cymbalta), Venlafexine (Efexor), Escitalopram (Cipralex), Paroxetine (Paxil, Seroxat), Fluoxetine (Prozac), Nefazodone (Serzone, Dutonin, Nefadar), Sertraline ( Zoloft, Lustral), Dapoxetine (Priligy), Fluvoxamine (Faverin), Vortioxetine (Brintellix).

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Tricyclic medications:

Amitriptyline (Tryptizol), Clomipramine (Anafranil, Imipramine (Tofranil), Lofepramine (Gamanil), Nortryptiline (Allegron), Amoxapine, Desipramine (Norpramin), Doxepin, Trimipramine, Imipramine, Mirtazapine ( Zispin), Protriptyline, as well as others, have been suggested as making the symptoms of RLS worse.

Antacids:

Most Proton Pump Inhibitors worsen RLS. Omeprazole, Lansoprazole, Pantoprazole, Rabeprazole, Esomeprazole.

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Anti Nauseates:

Discuss any anti nauseates with your doctors before surgery as many, including prochlorperazine or metoclopramide, will trigger RLS during and after surgery. Safe alternatives include odansetron (Zofran), domperidone or granisetron hydrochloride."

[ChrisColumbus in reply to ChrisColumbus]

Joolsg : I wonder whether it might be possible to have a link from the RLS-UK website menu to the 'Medications to Avoid' section rather than to have to scroll down through the Treatments section? I'm always conscious that the list that I've copied and saved could have been updated and I could be out-of-date.