Pregabalin experience

[TeddyRupert]

Thanks for all the questions and answers. These pages are so helpful. I've suffered with RLS for nearly 2 years. At the moment I'm taking 100mg of pregabalin 2 hours before bed. Some nights are good but others can be bad and I end doing midnight walks around the house. It certainly keeps me fit. How do people get on if they like me get a day time episodes ? Some times these attacks can happen in a confined space. Please tell us your stories.

[SueJohnson]

Why did you go from 150 mg of pregabalin down to 100 mg? Because I would normally suggest you increase your pregabalin to cover the bad nights. Even at 150 mg that is a low dose.

It was also suggested in a reply to your previous post that you take pregabalin during the day to cover those episodes. You could take it 3 times a day. The total daily amount of pregabalin is 600 mg. And the usual effective dose at night is 200 mg to 300 mg.

Did you ever get your ferritin tested?

[TeddyRupert in reply to SueJohnson]

Thank you Sue for reply. Sorry I made a mistake with dosage it has always been 100 mg of pregabalin. I was prescribed pregabalin for nerve pains after a year long course of immunotherapy. Which at the moment has been a success. I've never been diagnosed by a medical practitioner for RLS. I don't what it's like for you but I haven't seen a GP for ages. Do you think I should get a consultation ? My ferritin has not been tested. I have regular blood tests as I still take methotrexate The results are always OK. Thanks for reply.

[SueJohnson in reply to TeddyRupert]

Definitely get your ferritin tested. This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not 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, avoid a heavy meat meal the night before and fast after midnight and 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 transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

I would suggest you increase your pregabalin by 25 mg every couple of days until you find a dose that controls your symptoms every night.

[amrob123]

When I was taking 300mg nightly, that was sufficient to cover me for 24 hours. Since halving my dose, I experience some restlessness at different points of the day, depending on foods I've eaten, medications I'm taking (I'm currently on antibiotics also) and other factors. I'm wondering if you take a higher dose, whether you'll get longer coverage.

[TeddyRupert]

Thanks for replies. Question for Sue. How do you increase ferritin ? I'm completely ignorant on this subject. Thank you

[SueJohnson in reply to TeddyRupert]

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

However it is important to know what you ferritin and TSAT are because taking too much iron can be a problem.

[Eryl]

Pregabalin is an anticonvulsant meant to dampen down the results of the sensation that causes RLS, it does nothing to address the causes which are probably inflammation of the nerves. This inflammation is commonly caused by food in the diet. Google 'foods that cause inflammation' and try to cut those out of your diet or at least reduce their consumption.

[Joolsg in reply to Eryl]

The most common cause of inflammation is viral infections.Viruses cause ME, CFS, MS.

Viruses then stay in the body for decades and 'reactivate'.

Obviously a healthy, balanced diet helps everyone.

But your particular diet does not resolve RLS for everyone, unless their RLS is caused by dietary triggers, rather than the more common causes of low brain iron or spinal cord damage.

[Eryl in reply to Joolsg]

That's why I said probably, but if the cause is viral then Pregabalin will still not address the cause of the RLS.

[TeddyRupert in reply to Eryl]

Hi thanks for posts. I'm due a blood test this week I'll to the speak to the nurse and find out my ferritin levels. Thanks everyone