So many questions ??

[Dires]

I am 71 years old, weigh 8 stone, generally fit and healthy. I have probably had RLS for many years causing the occasional sleepless night or restless evening in the chair. I had my first prolonged nighttime episode last November which lasted a few nights. Nothing since except tingling in my left leg lower calf and ankle during the day and night. For the past 4 weeks, the RLS has returned at night with no let up. The tingling in my left leg has also worsened.

My Serum Ferritin is 50mcg/l and Transferrin Saturation Index is 44%

My GP prescribed modified release ferrous sulfate 325mg, which Sue advised me not to take as the drug release time is unknown.

I have bought ferrous bisglycinate 20mg.

On joining this wonderful forum, I have cut out caffeine, reduced alcohol, (and none in the evening), I already exercise most days. I’ve stopped using antihistamines for hay fever. I take Magnesium and Vitamin D. I have been taking Omeprazole for the past 6 years under medical advice for chronic gastritis.

I have been weaning myself off Omeprazole over the past 4 weeks and feeling the effects on my poor stomach.

I took my first 20mg ferrous bisglycinate the night before last and my stomach is really complaining.

I stretch my legs before I go to bed at 2300 hrs approx, read for a while then settle down 2330 - midnight.

Thankfully, I can usually get to sleep but then I wake every night at approx 0100 - 0200. I get up, stretch my legs again and generally get back to sleep for another couple of hours but sometimes have to get up again. I’m getting about 2-3 hours sleep at a time so maybe 6 hours a night of broken sleep.

My questions are:-

Why has this suddenly happened?

Is this how life is going to be from now on?

Should I have stopped Omeprazole and started iron at the same time or was that too much to expect of my poor stomach?

Given my results, is 20mg of Gentle Iron enough and if so, should I take 40mg alternate nights?

Is there anything that can lessen the impact on my stomach?

I’m feeling pretty fed up because it seems this has the potential to get an awful lot worse. It seems some of you on the forum are going through hell.

Sorry this is so long but sometimes you just feel you have to spill your heart out.

[SueJohnson]

I would not increase your iron considering your high transferrin saturation percentage. However you might try taking it with food but not milk because it contains calcium. That will decrease the absorption but will be easier on your stomach. Another possibility is to use an iron patch or to take liquid ferrous sulfate. Unfortunately yes this is how it is going to be. You need to consider taking gabapentin.

[Dires in reply to SueJohnson]

Thanks again Sue. So I stick to 20mg alternate nights?

If I take it with food is it going to take longer to raise my ferritin levels ? Would I take it daily or alternate days?

[SueJohnson in reply to Dires]

Since it will take longer you could switch to every night, but you would need to take it at the same time so it is 24 hours apart.

[Dires in reply to SueJohnson]

so take it with food every night or would morning be ok?

If I switched to liquid ferrous sulphate, what dose would that be and when would I take it?

Sorry I’m asking so many questions that you must have answered thousands of times before.

[SueJohnson in reply to Dires]

I don't mind answering questions. That's why I am on this site - to help others. Take it at night. For liquid ferrous sulfate look at the bottle. It should tell you how much elemental iron is in a teaspoon. You want 44 mg to 65 mg.

[Dires in reply to SueJohnson]

So the advice would be take 20mg Gentle Iron with food every night OR change to liquid iron. Would I take that every night or alternate nights?

What are your thoughts on IV iron?

I have to admit that I’m terrified of starting Gabapentin/ pregablin. I’ve used it before for a back problem but it made me dizzy and felt so strange I had to stop it. My daughter in law takes it for trigeminal neuralgia and has horrific side effects.

I’m still at the ‘bury my head in the sand ‘ stage where I’m hoping it will all miraculously go away. I am realistic though, I know it won’t.

[SueJohnson in reply to Dires]

I would take the liquid iron every other day. I doubt they would give you iv iron with your transferrin saturation so high. On the gabapentin, did you give it several weeks as often the side effects become less by then. You might want to try pregabalin. Although they are basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. If you take calcium don't take it within 2 hours. Otherwise your choice is a low dose opioid.

[Dires in reply to SueJohnson]

To be honest Sue, I didn’t persevere with the Pregabalin because I was frightened of falling and driving.

[NJB71 in reply to Dires]

I am 72 and was afraid of Pregabalin because care is recommended with the elderly. You mentioned back problems. I have suffered back problems for many years, disc degeneration and trapped nerves which cause numbness and tingling in my feet. I took the Pregabalin as a last resort for RLS and discovered that it is also prescribed for nerve pain etc.

I haven’t have any incidences of falls or other side effects. However I recognise that we are all different. But it sounds like it might be worth persevering for a while with the Pregabalin. You might also get a good nights sleeep. Something which eluded me for a life time until recently.

[Dires in reply to NJB71]

Thank you, that’s very reassuring.

My leg tingling is definitely worsening and I will TRY to see a GP for a proper neurological examination.

[grassgree]

The tingling in your left lower leg during the day--is that RLS or something else? Gabapentin should help with all of it, but mention it to your doctor anyway and ask about sciatica. If he doesn't rule that out, try some stretching and back exercises specific to that. Something set off your daytime nerve issues.

Also, have you tried Gaviscon or another brand for relief of heartburn?

[Joolsg]

Your ferritin is low and that is very probably the cause of your RLS. If you have stomach acid issues, you may not be absorbing iron properly.An iv iron infusion would avoid the stomach issues so push for an infusion. The problem in the UK is medical ignorance about RLS and the benefits of iron infusions. There are a few hospitals which will do infusions. St George's in Tooting, The Royal Cornwall in Truro and Sheffield.

You may have to see a private neurologist who knows about infusions. Prof. Walker at Queen Sq is one.

In the meantime, you could try Symprove. It's a really good probiotic that is expensive, but helps GERD and acid reflux. Website attached.

symprove.com/

[Dires in reply to Joolsg]

Thanks Joolsg.

The GP has been very resistant to IV iron as I’ve mentioned it to him before. There is a private clinic in Yeovil (Somerset) that gives iron infusions. It’s very expensive though.

Ill have a look at the website, thank you.

[Joolsg in reply to Dires]

You would have to check which formula they use. The NHS uses ferrous Carboxymaltose ( Injectafer). Some formulas are better than others for RLS.

[Dires in reply to Joolsg]

Ok, do you know which formula is best?

I’m so concerned about using Gabapentin/pregabalin. My daughter in law takes it for trigeminal neuralgia and has the most horrific side effects

[Joolsg in reply to Dires]

I think Injectafer is the most widely used on the NHS and is very safe & effective for RLS.Not everyone has horrific side effects on gabapentin and pregabalin. I started on gabapentin and the side effects were not good so I switched to pregabalin. The most common side effects are dizziness and water retention. However, they do settle after 2 or 3 months.

They didn't help my RLS, after augmentation on Ropinirole, so I stopped taking them. Your DIL should definitely try medical cannabis. I used it for trigeminal and occipital neuralgia and it was excellent.

[Dires in reply to Joolsg]

Thank you Joolsg

[Dotmowatee in reply to Dires]

I live in Plymouth and am under a brilliant haematologist due to a referral from my GP. I have had an iron infusion. I am 71 too.

[Dires in reply to Dotmowatee]

Are you able to give me more details please?

[Dires in reply to Dires]

Maybe you could private message me. I’m not sure how you do this but I think you can?

It would be really useful to know about your RLS journey and how you got to be referred to a haematologist.

Thank you for responding.

[Dotmowatee in reply to Dires]

Initially I saw Dr Robin Fackrell at The Circle Hospital in Bath privately. He wrote to my GP who followed his instructions after talking to Wayne Thomas at Derriford hospital. He is a haematologist. Unfortunately the infusion didn't help much. I take oxycontin.....excellent. I didn't like the idea, but nothing else helps.

[Dires in reply to Dotmowatee]

Thank you so much. At least there’s a possible someone to see.

[Huntingleroy in reply to Dotmowatee]

Hello , thats who I saw in Bath ! When I queried Augmentation he just dismissed it and put my Ropinirole up ! Now here I am clearly Augmenting and trying to wean off it . Good luck

[Dotmowatee in reply to Huntingleroy]

Really? I'm surprised, he said that I must come off Pramipexole and use an opioid to help. He wrote to my doctor with instructions. Sorry to hear that.

[Hidden in reply to Dotmowatee]

Dot, at least a year ago the infusion didn’t help much. I hope that has changed and you are off the heavy hitting drugs.

[Dotmowatee in reply to Hidden]

Worth a shot. Successful for many. The opioid which is a powerful drug has helped me enormously. Long may it last.

[Dires]

Hi grasstree,

Sue seems to think that the tingling is RLS. It has worsened since all the other symptoms started. It’s definitely not sciatica, I’ve had that in the past and I do do stretches every day.

I’m not sure if the Gaviscon interferes with the absorption of iron?

[grassgree in reply to Dires]

Gaviscon changes the acidity of the stomach contents, and that will decrease iron absorption, but less so than prescription meds. You may have to press for an IV iron infusion, as others as suggested.

If you've had sciatica in the past, remember to ask your doctor about the tingling. It may or may not be RLS. As far as side effects of gabapentin, you won't know till you try. Everyone is different.

[wantokporo]

I have been switching between pregabalin and gabapentin and every time the side effects are different, for whatever That is worth.

[Munroist]

As Sue says, the Mayo Algorithm only recommends IV iron if your transferrin saturation (TSAT) is less than 45% and yours is only just less at 44% so it would be useful to understand why this is and what the consequences or risks might be. Maybe a haematologist or GP could explain. According to Dr Buchfuhrer the numbers in the Mayo Algorithm are a consensus and not an absolute truth so there may be some room for flexibility.

[Bieler]

Have you tried Tramadol? See if your Dr can give you an RX for that. Start with 100 mg at night. It’s the only thing that works for me.

I would stay on the omeprazole. Best to you.

[Dires in reply to Bieler]

Thank you but I believe that Tramadol can cause augmentation.

I need to come off the Omeprazole, its likely caused my low serum ferritin.

[Bieler]

Yes, I’ve heard that in this site. I have been on Tramadol for 8 years and was on max dose at first then I lowered it to 200 mg instead of 400 mg all by myself. I’m other words, my Dr didn’t make me.

I had severe leg and arm pain and I find taking 50 mg 4x per day keeps it all at bay. I finally feel “normal” and am not always thinking of pain. Basically pain free with no side effects.

I’ve never had to increase the dose and it still works FOR ME. I’m grateful I tried it. But what works for one may not work for others.

All my best to you.

[Dires in reply to Bieler]

You’re absolutely right, it’s so individual. I really glad it’s worked for you. I’ll have to go through the process of trial and error I expect.

[Cowbsky]

Hi, Dires_ rather similar situation concerning sleep time;

_ I have been trying to understand relationships between RLS and REM sleep stages; If there is any at all . I always have sleep interruption associated with truncated REM , bad dreams/nightmare, sometimes followed by RLS crises (every night);

_ then, just to know: would you know whether you wake up just following nightmares?

_ have you ever gone through polissonagraphy and sleep disorder exploration?

Good luck.

[Dires in reply to Cowbsky]

I am definitely having more vivid dreams but I don’t think they are associated with waking up as I seem to wake at the same time each night. I wonder if it’s just a pattern I’ve got into. My legs are always troublesome when I wake though.

I’ve never been a particularly good sleeper but I’ve never had sleep studies.

[Cowbsky in reply to Dires]

_ that is interesting. Should you go to bed at same time, it would be expected RLS at approximately same time, if associated/following REM. _ You may know, REM stages are very regular at some 60-90 minute intervals, and dominate at later hours.

_ particularly, I pretty much never wake up out of REM stages.

Thanks

[Dires in reply to Cowbsky]

I do go to bed at pretty much the same time

[wendersgame]

What cowbsky says is interesting here too. I only found out RLS was actually a thing snd was told to get my ferritin checked by a sleep specialist after I had a sleep study done for night terrors.

I've a history of sleep walking and night terrors and I fell down the stairs one night after a night terror and I'd done terribly frightening things during my night terrors and realised something had to be done.

It turned out after the sleep study that my legs moved ALOT in my sleep and they seemed to be triggering my night terrors as they'd wake me at the "wrong" time.

There's 100% a link for me with the two disorders. I have RLS anyway but if I become sleep deprived due to it, I can also kick off a round of night terrors too!

[Dires in reply to wendersgame]

There is so much more to be learnt about this dreadful condition.

[Dotmowatee]

It certainly is a good thing that you are not a neurologist.