Getting to the position that this is now really difficult to cope with and having a major impact on sleep (obviously) and day time activities. Lucky to get 90 mins sleep some nights and if that happens 3 nights in a row, absolutely wrecked/zombie during the day time.
On daily 2,700Mg of Gabapentin and sleeping tablets. No material difference any more. CT Scan, Ferritin levels checked and on magnesium and iron tablets.
Came off ropinirole about 18 months ago (thankfully).
Any advice on use of MRI scan?
On seeking a referral to Neurology?
Seeking referral to an outstanding expert in London or wherever.
Any other helpful advice - thanks,
John
Written by
Hami13
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Sadly gabapentin often fails for RLS patients after years on dopamine agonists.I wasted 5 years on 150mg pregabalin and 25mg Oxycontin. Like you I still had very severe RLS.
Your next step is a low dose opioid.
What was your serum ferritin level?
Try to see Dr Guy Leschziner at Guys or Professor Matthew Walker at Queen Sq, UCL.
Both will prescribe Buprenorphine sublingual pills which have a long half life and cover refractory RLS.
What minimum? The NHS ridiculous minimum or the accepted minimum in the Mayo Clinic Algorithm and NICE guidance.Your serum ferritin needs to be above 100ųg, preferably 200ųg/L. Raising serum ferritin can help the majority of RLS cases
Start taking ferrous bisglycinate pills now. Two every other night.
Get repeat full iron panel blood tests in 6 weeks and push for an iron infusion if levels are still below 100.
You can get a private iron infusion from the Iron Clinic for around £800.
Are you sure Dr Leschziner will prescribe buprenorphine as my notes say he will prescribe taginact but not buprenorphine. Also that Dr Walker used to prescribe buprenorphine but now won't because of tooth decay. I will change my notes if I am wrong.
Prof Walker is still prescribing Buprenorphine to at least 3 people on here. He did tell one patient that he was worried about the tooth decay issue to one patient. But I think he'll still prescribe it.
If the gabapentin is not helping you, you might as well come off it but you need to do so very slowly to avoid withdrawal effects. Reduce by100 - 200 mg every 2 weeks. If you do so you will have very few or no withdrawal effects. If you do have any, slow down even further, In very very rare cases you still might have withdrawal effects.
An MRI scan is useless for RLS.
What was your ferritin. Was it more than 100?
You probably need a low dose opioid. I would recommend buprenorphine or methadone as they are long lasting. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed one of the others be sure you are given enough to take them that often. You will need to see a neurologist to recommend your GP to prescribe it.
Dr Novraj Dhanjal National Hospital for Neurology and Neurosurgery recommended by Ephemera will recommend it. The question then is whether your GP will prescribe it and whether it is red listed in your area (ask your pharmacist).
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
If you haven't check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it at Https://mayoclinicproceedings.org/a...
You can print out the section on opioids to show your doctor if they are reluctant.
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