How my RLS started

[Chiby-azul]

in all my life never before had this condition and the psychiatrist prescribed me mirtazarpine low doses but when I was very sick and the dr took out of the other antidepressant suddenly they increase the dosage and the RLS started I couldn’t sleep but they didn’t care and at that moment it was out my hand but as soon as could I tried to talk to the psychiatrist telling him I didn’t need it anymore I wasn’t feeling depressed and also the new uncomfortable symptom he didn’t do it so it took 3 years more until I could and I am out of that medication for at least 9 month and still have RLS so it seems after you get it is for life and getting worse every day and very scared of any new medication and gabapentin never helped at all, I don’t know about other people experience about this is just sharing my thoughts and how helpless I feel because nothing help me enough

[Edward567]

Hello Chiby, After reading your note it is what I imagine when we have to go into hospital : the staff stop all medication and restart. I feel I will demand I have my Pramipexole as up to now it works for me personally. Your experience just proves RLS is not taken seriously enough.

[SueJohnson]

How much gabapentin were you on? Many people think it doesn't work because they don't take enough. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." And it also needs to be taken the right way, Ask your doctor for 100 mg capsules and increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. 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. If you take magnesium, take it at least 3 hours before gabapentin as it interferes with the absorption.of gabapentin. Have you had your ferritin tested? If so what was it? Increasing it to 100 or more reduces symptoms in 60% of people. If you take any other medicines or over the counter supplements, if you list them here I can tell you if any of them are likely to exacerbate symptoms and can perhaps give you a safe substitute.

[Chiby-azul in reply to SueJohnson]

I started taking high doses of gabapentin because I have peripheral neuropathy and the RLS came later since the beginning the neurologist prescribed me 3,000mg per day a crazy high doses for a beginning of an illness and I didn’t but the mirtazarpine was causing me RLS more and recently I decided with the approval of my new dr to lower to 1,500mg divided in 3 dosages during the course of the day. I can’t say that lowering the gabapentin worsen the RLS just the withdrawal was crazy enough but you gave an idea about the magnesium I was taking like 1 or 2 hours later I didn’t know it matter for them to work and until now my ferritin level are normal and just the acupuncture help me a little and acupressure too, thank you so much for giving me good advice and I will keep in mind everything you just told great advice

[SueJohnson in reply to Chiby-azul]

Your doctor should have told you to lower your gabapentin dose slowly, then you would have had no withdrawal effects. If you only have RLS at night, you might want to increase your nighttime dose of gabapentin since 500 mg and even the 1000 mg dose you were taking at night is not often enough as I mentioned above. I learned about the magnesium the hard way. I thought I needed to increase my gabapentin, when it turned out it was the magnesium. You say your ferritin level is normal. Do you know what it is? Doctors will tell you it is normal but what is normal for other people is not normal for RLS.

[SueJohnson in reply to Chiby-azul]

Also, have you had your ferritin checked?

[DicCarlson]

Yes, doctors told me ferritin was normal - nothing to see here! Ferritin was indeed normal (49), iron supplements were the key to alleviate my severe RLS.