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
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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.
Thanks again. Don't have serum ferritin level number handy but iron infusion (which the Consultant wanted to do) was ruled out as that wasn't the problem. 30+ years with RLS, so have tried many things as you can imagine.
If it was just above minimum and the doctor was referring to the range of normal ferritin then it was very very low as what is normal for others is not normal for those of us with RLS. For a male the minimum is only 30. So I am going to assume that was it and give you my usual advice until you can get an iron infusion or at least check what your ferritin was - ask your doctor if you can't find it.
Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Also take Lactobacillus plantarum 299v as it also helps its absorption.
Take it every other day as more is absorbed that way preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.
If you take magnesium (or magnesium rich foods), calcium (or calcium rich foods) or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours.
It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 3 months if you are taking iron tablets or after 8 weeks if you have an iron infusion. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible.
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.
Thanks Sue - 30+ years with this wretched syndrome and have tried many, many things as you can imagine. We are avid watchers of the Mayo Clinic advice etc.
It is clear I am heading to opioids but want to go through a few other hurdles first and keep up some hope and not get to the end of the road too quickly and then nowhere to go if it doesn't work. The phasing out of gabapentin is a very helpful structure to follow.
Hospital Consultant (and GP) very supportive and open to anything I have suggested.
Another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I was on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib...sciencedirect.com/science/a...
Take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If you have headaches they tend to disappear or lessen after around 5 days. Coffee can counteract its effects by blocking the same receptors that dipyridamole aims to enhance.so the advice is to avoid it 12 to 24 hours before taking the dipyridamole. It is possible you could take it in the morning or it is possible you can't take it at all.
Unfortunately the video mentions that dipyridamol may not work for those who have been on DAs. I tried it after being off DAs for 4 or 5 months, and it didn’t work for me. Hami13 has been off DAs for much longer, so it might work - certainly worth a try. But be prepared for the likelihood of it not working.
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