Full body RLS

[Andyroo66]

Hi

apart from flare ups witb SSRI's (which I stopped) my RLS has been fairly mild over the years (about 20).

Recently I have compound problems- RLS seemed to be getting worse, I got gastritis, started onomeprazole, the gastritis triggered migraines which stressed me out and made my RLS far worse. Like a full body migraine with burning nerves in the night and nerve surges. And I feel sweaty without actually sweating!

then I was told I have inhereted long QT syndrome and was started on Nadolol beta blocker, this seems to have given me leg jerks in the night so im not sleeping even more and the whole thing is getting out of control

When im up and about it's not too bad but once lying down the whole thing is happening- so it's like fully body neuropathy/RLS when im still

I read somewhere its due to a problem with the brain motor cortex

I have a prescription for gabapentin but scared to take it

Any suggestions ideas?

Im due to speak with the cardiologist shortly to see if he has experience of treating long QT for patients with RLS

[Parminter]

Beta blockers can make RLS worse, and there are reports (including on this site) that onomeprazole can make it worse.

So you are in a bind.

You must report all this to your doctors, and ask them to please research all unwanted effects of drugs that they may prescribe. Or rather, find the information yourself and take it to them.

Steadying your heart rhythm is not much good if you never sleep - stress is a cause of heart problems of every sort - and RLS/WED sufferers are pretty stressed people.

There may be a strong relationship between the one thing and the other.

Google 'heart problems and RLS' and you will come across a slew of articles.

All of us are more likely to suffer heart problems than those without RLS, and the RLS may be causal for the heart problems because of the huge stresses of our condition - everything is linked.

[Mum007 in reply to Parminter]

I’ll second the ppi’s Giving you rsl. Takes about 5 days to kick in then bam! No respite from rsl until 2 days out of my system.

[Andyroo66 in reply to Mum007]

thanks, i think ppis interfere with iron absorption so that may be the reason it your RLS is due to iron, mine isnt i think (ferritin is 100)

The cardio has agreed for me to stop the nadolol for a few days and review as there are other options, having looked into it i think i need one that is less fat soluble so it doesnt cross the blood brain barrier as much

im staying on the omeprazole for a bit to see how it goes, may switch to ranitidine if the body jerks continue

seeing the neurologist on monday, he wants to prescribe Lamotrigine anti epileptic sodium channel blocker but that looks well scary to me

[Mum007 in reply to Andyroo66]

My ferritin is 111 and I still take iron bisglycinate as I don’t think 111 is high enough for my rsl. Even at this level the ppi’s Still affect me badly. If I stop the iron ( when I’m not taking ppi’s) the rsl kick in. (Excuse the pun!) so in my case iron still helps and ppis make it worse regardless of iron count.

[Andyroo66 in reply to Mum007]

thats very interesting i may start some iron bisglycinate 20mg one every other night and see if it helps

[DicCarlson in reply to Andyroo66]

I would be careful with Lamotrigine (Lamictal) - if you are susceptible there is a horrible skin rash (black box warning for the life-threatening rash) that can develop. I had serious reflux recently - took Apple Cider Vinegar w/baking soda in water and took one ranitidine at night to help reflux/sleep. Also used the supplement d-Limonene after breakfast.

[Andyroo66 in reply to Mum007]

How long for iron bisglycinate to work? Is it safe to take long term? (my ferritin is about 100) tried it last nite, not sure if I was much different- still unsettled and had nerve surges and a little of the PLMD, will keep at it, guess Thanks

[Mum007 in reply to Andyroo66]

Everyone is different and I am no specialist but I would say at least a week if not several weeks. Don’t take it with food or drinks with dairy in. I take it about an hour before bed on an empty stomach and I only take it every other night as this is what has been suggested on this website although I did initially take it every night for several years. My doctor didn’t seem concerned that I was taking iron supplements but it is probably best if you could get your iron levels checked again in a few weeks time just to make sure. The concern is that you get iron overload (hemachromatosis) Which is dangerous but it is usually people who have very high iron levels to start with that have this and it is an inherited condition - greater than 300 for men.

[Joolsg in reply to Andyroo66]

I’ve been taking ferrous bisglycinate every other night for over 2 years. It’s taken me that long to get ferritin levels to 175- 200 from 65.

I’ve been on Very, very restrictive diets in that time. Over a year on strict paleo, then I added cheese and eliminated nightshades, onions & garlic for further 6 months. Made no difference to my RLS. Then I followed a vegan diet for 9 months and thought it was making a difference but it was around the same time my ferritin levels went from 130 to 200.

So I didn’t know if the vegan diet or the increase in ferritin was responsible.

At Christmas I stopped the vegan diet and have since been eating everything and my RLS is the same as it was before Christmas.

I have come to the conclusion raising ferritin is the reason my RLS improved so definitely take the ferrous bisglycinate but don’t expect instant results. It takes months to raise levels.

[Franklin123 in reply to Mum007]

what are ppls please?

[Mum007 in reply to Franklin123]

Proton pump inhibitors. Medication for acid reflux and gastritis or ulcers. omeprazole, esomeprazole, lanzaprazole etc.

[Hidden]

Just throwing this out there, you might consider looking at your diet and moving away from processed foods in general. So many of us have found that diet changes have made a difference, and the crud they put in processed foods can have drastic effects on some. Just moving toward whole, real food might make a difference, something most doctors won't tell you to do. (They are trained to whip out the prescription pad.) Personally, staying away from flour products and starchy vegetables has made a big difference for me. Some react to dairy. You have to experiment and see what works for you, but generally speaking, getting away from processed food industry products can only help! Good luck to you; hope you find help.

[Andyroo66 in reply to Hidden]

cheers i have gone gluten free recently, hoping it helps in the long term buut its difficult as its in so many foods, could go grain free but thats rather extreme, dairy (cows milk/cheese) could be a trigger, I'm keeping a food diary.

[Hidden in reply to Andyroo66]

Sounds like a great start, and yes, I agree; it's not easy. Rather depends on how desperate you get! Hoping you find your triggers.