Butalbital

[BarnGir1]

Has anyone used low dose butalbital (Fioricet or Fiorinol) when discontinuing ropinerole? I noticed that several members are not taking prescription meds for RLS. How long did it take you to find a combination of supplements that gave you relief and have you had to monitor and adjust your regimen over time?

[ChrisColumbus]

I thought I'd seen mention of Butapap on here (butalbital combined with paracetamol/acetaminophen) but I can't find the reference now. Fioricet and Fiorinal have been mentioned but only pointing out that they both contain caffeine, which is a problem for some but a benefit for others: Fioricet is butalbital, paracetamol/acetaminophen and caffeine; Fiorinal is butalbital, aspirin and caffeine. If any of these have helped with withdrawal from a dopamine agonist I've not found a post.

[BarnGir1 in reply to ChrisColumbus]

Thanks for checking it out.

[ChrisColumbus]

As to coping with RLS without prescribed meds: I get the feeling that this is (very) difficult if one has been on a dopamine agonist for any length of time.

I first had what I now recognise as RLS when a teenager, but it wasn't until I was in my late 30s/early 40s that it became a real problem: many evenings/nights wandering around, or spent with legs as near as possible to vertical propped against a wall, or kneeling on the floor with torso on a chair or bed....

But when I first wondered about medications for RLS - 25-30 years ago - I was offered an anti-depressant (can't remember which one) as a supposed help with RLS which I declined. At some point it was suggested that I look at boosting iron so I tried taking supplements: again, I don't remember which form was suggested but it gave me bowel issues so I discontinued (but when I finally started having blood tests over 20 years ago my ferritin levels were always high anyway, only once under 200).

So the RLS continued - until around 15 years ago when a relative recommended magnesium citrate, which miraculously stopped the RLS almost immediately Until I started getting random breakthroughs which I never understood at the time, and then eventually the magnesium seemed to stop working.

It was advice on this forum which pointed the finger at statins: these (atorvastatin then rosuvastatin) totally overwhelmed the magnesium and made me desperate. (I may also have been given an anti-nausea drug when I had a hernia repair before radiotherapy which may also have been a trigger). Anyway, I negotiated with my doctors and got taken off statins and things improved.

I had thought that caffeine was a problem, but on cutting this out I was still getting some breakthroughs, and two years ago I realised that artificial sweeteners - particularly aspartame - were triggering me. On giving up diet drinks entirely, it was only last year that I found that sugary foods and drinks - in excess or in the evenings - were another culprit.

So I'm now 70 and I've only had a couple of breakthroughs in the last 6 months (when I've given in and binged). I've cut out diet drinks entirely, and reduced my caffeine and sugar intake particularly after lunch. I also find that sleeping on my front with one knee raised - or failing that on my side - helps if I get vague RLS feelings.

I still have other health problems - obese on the BMI scale, slightly high cholesterol, high blood pressure controlled with losartan, gout - but only very occasional RLS!

[Madlegs1 in reply to ChrisColumbus]

You can be happy that BMI is now utterly discredited.

Although it may take about 30 years for that knowledge to work its way through to medical frontline.

😢

[ChrisColumbus in reply to Madlegs1]

The consultant I saw in Oncology Clinic last week wouldn't believe that I was 'obese', and neither would the nurse practitioner I saw the week before - until they saw the BMI figures. But I AM seriously overweight!

[Madlegs1 in reply to ChrisColumbus]

When making a cup of tea for the wife I shouted from the kitchen, "do you want a Kit Kat Chunky?"I don't remember anything else after that!

[BarnGir1 in reply to ChrisColumbus]

Thanks for sharing. I feel like I might be able to make it with OTC that are helping me now as I transition off Requip. I don't think I can take the gaba meds at all due to other health issues. My cholestrol is somewhat high but I might be able to lower my statin meds. I am on an antidepressant, have been for about 40 years now. Came off once, not good outcome, changed to another brand, did not work as well, so back on old standby. I have had RLS for most of my life but did not know what it was. It did not bother me but did bother anyone sleeping in the same room. In the past 5 years it became so bad that I could not sleep. Requip did the trick but my neurologist must now have known about augmentation because it was never mentioned. Requip has worked well until recently when I decided to check out what was online. So glad to have found this site. Very helpful with more uptodate info than med staff here. Grateful for knowledge and a ray of hope everyone provides even with all the suffering.

[ChrisColumbus in reply to BarnGir1]

Good luck!

[Munroist in reply to ChrisColumbus]

I also find sleeping on my front with one knee raised can help suppress mild RLS for long enough to get to sleep. One leg is pinned by body weight and the other is stretched and also harder to move. Just swap knees if it isn’t quite working.