about the replies given to the many RLS sufferers who are struggling with their medication. All medications, if you read the leaflets, have side-effects and complications and at the end of the day, we have to weigh up which ones are going to be effective for each of us individually.
1.Dopamine Agonists (DA’s). We all know they may cause Augmentation, particularly when increasing the dose. However, for many years (I am talking about 10-15 years) DA’s seem to have helped most of this RLS community, even though not entirely satisfactorily. Contrary to what is being said on this Forum, DA’s are actually still first line treatment according to the UK NICE Guidelines, together with:
2.Alpha-2-Delta-Ligands (A2D Ligands). These drugs may be effective for new RLS patients and are generally preferred for people with severe sleeping problems. However, I notice that for nearly 18 months many of us have been encouraged (and still are) to come off the DA’s (with scary stories about Augmentation) and to switch to A2D Ligands, although we were not told that according to Dr. Buchfuhrer (and I quote from my recent correspondence with him): “Gabapentin-like drugs do not work as well once a patient has been on a DA”. My concern is the many upsetting stories from people trying to come off the DA’s and onto Gabapentin or Pregabalin. Apart from suffering terrible withdrawal symptoms from DA’s, they often find that Gabapentin-like drugs do not work well and/or may cause side effects, such as memory loss, vertigo and in my case, deterioration of eyesight.
3.Opioids (such as Codeine, Oxycodone, Tramadol, Methadone and Buprenorphine). My real concern is the amount of Morphine these contain. 0.1-0.125 mg of Buprenorphine already contains 10mg of Morphine, as does 3.4 mg of Methadone, 100 mg of Tramadol and 7 mg Oxycodone, whereas 20 mg of Codeine (or Dihydrocodeine) only contains 3 mg of Morphine. According to the article The Appropriate Use of Opioids in the Treatment of Refractory RLS, sent to me by Dr. Buchfuhrer: “the comparative effectiveness and side effects of different opioids in patients with refractory RLS needs to be determined” and “larger studies are needed to assess the risk of dose escalation and abuse of opioids prescribed for RLS”.
4.Combination Therapy: According to the above article: “studies are needed to confirm the clinical impression that maintaining a low dose of a DA or A2D Ligand may allow a lower dose of opioid to be used”. I would really welcome further research in this line of treatment, as it means that before people choose to go onto quite strong opioids, they first try and stay on DA’s or A2D Ligands and supplement them with a much lower dose of opioid.
TRIGGERS to be avoided: Anti-depressants, anti-histamines, artificial sweeteners and any foods with high sugar content, such as grapes, raisins, dates, apples, pears as well as margarine, mayonnaise and anything containing Soya Lecithin plus onions and garlic.
Supplements which may help: Slow-Release Iron, Magnesium, Turmeric, Vitamine B12 and D.
So, may I share with you what works for me and has been working for nearly a year: Combination Therapy: I take 0.28 mg of Prolonged Release Mirapex, 0.5 mg of Clonazepam and 2 Co-dydramol. I take one high strength Senokot in the evening for constipation.
I also fast from 11 pm till 1 pm the following day, which means I have my breakfast at lunchtime. My RLS is not perfect, but at night I put my head on my pillow and sleep like a baby, sometimes for 9 to 10 hours. Long may it last!