Advice please

[Hoochybaby]

Help I’m desperate at the moment I’ve had an awful day today my rls has been terrible. I took my Pregabalin 150mg and my pramipexole 0.088mg at 9pm and two paracetamol at 3pm and 7pm but my legs were so bad I couldn’t rest and it’s now midnight and I still can’t rest or sleep my legs have got the urge to move uncontrollably I’ve now taken a 30 mg codeine 30 minutes ago but no improvement. I must phone my GP tomorrow what should I ask for ? A stronger opioid ? I need something urgently I can’t get any peace or rest my legs are so bad!

I can’t think straight with tiredness but apart from taking zopiclone again which I don’t want to do what alternative will the GP suggest? What is he licensed to prescribe?

I look forward to suggestions I feel so desperate for sleep and rest

[Felicity21]

Hi Hoochybaby, I feel for you. It sounds horrible what you are going through. Maybe you could take a look at what you eat and drink during the day. We all have certain triggers. But the most common ones seem to be additives and sugar. Also alcohol and caffeine. You might like to try a food diary. I wonder whether you are going through a particular stressful or anxious time so counselling might help to give you some coping strategies. To make me sleepy, I have a cup of Nighttime Pukka tea. When you are really desperate, a hot bath and breathing exercises into your lower abdomen rather than into your chest might help to relax you. Take care.

[DicCarlson]

Have you had your iron levels tested? Ferritin and % saturation are important markers for RLS.

[StargazerRhi]

Hopefully the codeine kicked in soon after you wrote this, it can take a while. I doubt docs would be keen to give anything stronger but if you're going through a bad spell could you try codeine earlier instead of the paracetamol. Or if you're ok to take it, I've always found aspirin better than paracetamol for RLS, especially the dissolvable ones which maybe work quicker. As said above/below, watch what you eat and drink throughout the day but especially in the evening. Sugar is a #1 trigger and can be hidden in things. I used to crave sugary things when I had an attack which definitely didn't help so it's good to keep as low carb as possible generally. And painful as it is, if you can get out to walk or pace round the house, it's a good distraction.

[m1946]

HiUnfortunately I have no experience with Pregabalin only Ropinirole & Tramadol!

[Tease-ah]

Little advice on taking Pramipexole. Do not take them "after" food intake as they do not seem to work then. I have severe RLS and take 75mg Pregablin and 5 x 0.088mg Pramipexole for the last 4 years now. I take them 20 min before my meal and then go to bed 2 hours after my meal. Works fine every time, if i eat first and take my meds after i got no chance. Hope this helps. I am aware this can be a pain especially on holiday i need to go to my room after my meal whilst others can go out for a drink. BTW avoid alcohol, chocolate and anything with caffeine. Don't think Paracetamol does anything but i know Ibuprofen helps.

[Alfluff]

Hi,

My story with RLS:

First diagnosed 13 years ago. Treatment then Pramipexole, important to me was the brand Mirapexin, once by mistake I was given a different brand that did not work. Started with 1 x 0.088mg which I took around 8pm, this worked without the need to take another drug. A little vague on times, after 18mths increased the dose to 2 x 0.088mg which I took at 7pm & 10pm, again worked well for 12 - 14mths. Same again 12mths later had to increase the dose this time to 4 x 0.088mg which I took 2 x at 3pm (started to get RLS earlier in the evening) & 2 at 8pm. This worked for a longer period around 3 years, yes I found myself moving around the living room in the evening but was ok. The effect of the drug was weakening so i took it upon myself to increase again to 5 then 6 x 0.088mg, big mistake, the RLS got worse especially during the day, the term for this is augmentation.

The RLS became unbearable, I insisted my GP referred me to a Neurologist. I was lucky the appointment came through quite quickly. I last saw a Neurologist 9 years ago. At the appointment with my answers to probing questions I was classed as a "Severe" sufferer.

First I was given a blood test to see if my Iron levels were ok, they were.

The suggested treatment was in 3 phases depending on the success:

First - slowly reduce the Pramipexol to ween off, add 300mg of Gabapentine. This did not work.

Second - still taking the Gabapentine, now completely off the Pramipexole add 0.5mg of Clonazepan, big mistake felt terrible and started to eat more. I will say the RLS in the day & evening stopped, I believe this is because I stopped taking Pramipexole. I was still suffering in bed at night, this is with cutting out caffeine has recommended if you are taking Gabapentine.

The third option I did not want, Targinact which I think is an opioid.

So now were am I, RLS wise best place I have ever been in years, I can drink alcohol, caffeine, leave a normal life, no RLS in the day or evening, the odd episode at night in bed, how was this achieved, not though GP's advice, I have educated my GP about this condition over the years.

My treatment:

Switched the Gabapentine to Pregabalin 2 x 150mg, I take one at 6pm & 1 at 10pm, added to this which was the answer a small oxo cube piece of Cannabis cake. There are legal implications to this but it works for me, I tried the CBD oil capsule bought from a local health shop but did not work, you can go online to find stronger capsules which work.

That is my story, I know Pramipexole are not advised but I was lucky, they helped my RLS for 11 years.

That is my story, forgot to add my name is Alan, 54 years young.

[Hoochybaby in reply to Alfluff]

Hi Alan don’t know if your in uk or us but to my knowledge cannabis is not legal over here apart from oil that is available from health shopsNice yes here that you are doing well I like a good news story in these troubled times

I take 150 mg pregabalin and 0.088 mg Pramipexole at 9am at night doesn’t seem to do me much good nowadays

I’ve suffered from augmentation in the past pretty badly due poorly advised GPs and neurologist who kept upping the dosage of Pramipexole

I also take codeine at night 30 mg and sometimes 60 mg depending how bad my rls is

But insomnia is my biggest bugbear no matter what I do or what meds I take

[Alfluff in reply to Hoochybaby]

Hi, I live in the UK, yes it is illegal but can be obtained. A friend of mine put me on to someone who bakes me a cake containing cannabis, lasts me about 5 weeks, tastes good too.