I’ve had RLS for years. I went to the GP but it feels like he was clutching at straws a bit. I was put on 10mg Amitriptyline - which had been rather hit and miss. And I know from here that many would say Amitriptyline is the last thing you want to have for RLS.
So I’ve got an GP appointment coming up. I noted some on here have been evangelising about Gabopentin. I suspect I’ll have to tell the GP what is worth trying next.
Any advice please?
The first treatment should always be iron, followed by a review/ replacement of trigger meds.GP should know that all anti depressants trigger RLS. Amitriptyline is a tricyclical anti depressant.
Read the RLS UK website.
It sets out which meds worsen RLS.
Ask GP for full panel fasting blood tests and ensure serum iron is above 60, serum ferritin above 100, preferably 200. Raising brain iron levels through oral pills and iron infusions dramatically improves RLS. One day, iron infusions will be standard treatment for RLS!
If stopping/replacing all triggers meds ( see list on RLSUK website) doesn't improve RLS, then first line meds are now pregabalin or gabapentin. Website has starting doses and how and when to take.
Read all you can on this forum, the RLS UK website and the Mayo algorithm.
RLS isn't taught at ANY stage in medical training in the UK so GPs, and even neurologists, know very little about it.
The more you learn, the better the treatment you'll receive.
Do NOT start Pramipexole,Ropinirole or the Neupro patch. They are no longer first line treatment amongst experts because of the very high rates of drug induced worsening ( augmentation) and Impulse Control Disorder. Getting off them is absolute hell, so best avoided.
NHS and NICE guidance on RLS is outdated, as it still has dopamine agonists as first line drug treatment.
As Joolsg said Amitriptyline makes RLS worse and why would your doctor put you on an antidepressant for RLS? It certainly is not used to help RLS, To elaborate on what Joolsg said. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Ask your doctor to prescribe gabapentin or pregabalin. ( Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin and pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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 uptodate on it at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate 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, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices, using a standing desk, listening to music, meditation and yoga.
If you need an antidepressant, trazodone is safe for RLS. It also treats anxiety and insomnia.
Wow! Thank you both for such brilliant and informative responses. I wish I’d posted on here before!!
The Amitriptyline is an odd one. I did raise it with my private health doctor and she looked online but said she couldn’t see anything to suggest it would worsen the effects of RLS - to which I was someone taken aback given I found loads from a simple search!
Anyhow, I’ll share all of the above with my GP and say I want to come off the Amil and go onto gabopentin or pregablin; but I will talk about the Iron piece first.
I’m only on two medications: the Amil and Escitalopram. Does that latter have any bearing on RLS?
That is another antidepressant that can make RLS worse.
When I first got RLS a few years ago my GP also put me on Amitriptyline. She thought It might help me sleep. But it made the RLS a lot worse.
I’ve been on Gabapentin and then switched to Pregabalin.
Thanks for that response. That could explain it.
How has it been with Gabapentin and Pregabalin?
Personally I found the gabapentin wasn’t getting me past a couple of hours sleep though the night. The Pregabalin has been a lot better but I’m still playing around with the timing of when to take it. I currently trying 50mg at 19.30 and 200mg at 21.00. (I had recently increased the total amount to 275mg, but found the after effects were too much
Despite increasing the dosage slowly, I found that with both of them I had brain fog and dizziness for a couple of weeks during the morning. So which ever one you try, give it time to settle in before you decide if it works for you.
🤞🤞🤞
Also a 51 year old male with RLS. I had an iron infusion which made no difference. Pregabalin was no help. Ropinirole the same. The only thing that works is Tramadol. I hate taking it as its an opiod and have tried coming off it twice and definitely had withdrawal symptoms for several days. I only take 50mg or sometimes 100mg and take it every other day. I also have sub clinical hypothyroidism due to autoimmune disease and I suspect that worsens RLS
Do not touch Pramipexole without discussing in full the side effects as for some people they are very real and life destroying and be aware that they may not show up in the short term but could at a later date
Bit of advice needed please
REQUESTING ADVICE PLEASE 
Advice on gabapentin please
Advice please 
Dopamine to Pregabalin transition advice, please
