hi
I’m new to the forum and looking for your top tips.
I have bipolar disorder, ptsd and anxiety so I’m on various medications that can trigger rls. I’m bothered every night and sleep is severely disrupted.
They put me on carbamazepine in the past and I’m now on Gabapentin but only on 300mg. Appears to have no effect. Not seen a neurologist yet, only psychiatrist and GP.
I’d appreciate your top tips for where to start and how in the UK.
Welcome to the forum. You will find lots of help, support and understanding here.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. 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 ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead your doctor has prescribe gabapentin which is correct. Beginning dose is usually 300 mg gabapentin so you have started out correctly. It will take 3 weeks before it is fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. 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. Most of the side effects 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 ." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason .
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(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) 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 like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
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.
Great thanks so much
Many meds for bi polar and anxiety trigger RLS. However, you need to work closely with your Psychiatrist to ensure your condition is covered effectively.Psychiatrists actually know more about all than most neurologists.
Follow SueJohnson advice, get your blood tests and raise serum ferritin above 100ųg/L.
Ask your Psychiatrist to guide you on the safest bi polar meds that won't worsen the RLS.
Pregabalin and gabapentin are first line meds, but the dose you're on is too low. Refer your Psychiatrist to RLS-UK website for the list of meds to treat RLS and the doses and timings.
You may be better on a low dose, long half life opioid, depending on how severe your RLS is.
Brilliant thanks
ncbi.nlm.nih.gov/pmc/articl....
DrDavinchi, that paper is only about 3 individuals with (severe) nephrotic syndrome (kidney disease). I haven’t yet seen or read the full paper, but I think this is far from useful for anyone yet. And definitely not for Greenbeltlady with her soecific question about psychiatric issues and medicines complicating her rls treatment.
This recent post may be of interest to you. The member (poster) has recently started on lamotrigine.
healthunlocked.com/rlsuk/po...
Thank you
After trying many anti psychotics, and nearly every antidepressants my sleep doctor who prescribes my opiod for RLS agreed with my psychiatrist to bump up my opiod dose, essentially giving me a buffer to try lower doses of mental health meds. This has worked well and relieved some stress and helplessness over the issue.
Ok thanks for that
I live in the USA and have access to Gabapentin enacabril called Horizant by brand. I’ll take that at 5 PM and then later in the evening at 8 PM I take gabapentin HCL salt 300 mg. I think that if you could increase your gabapentin to at least 900 mg that you would get some relief from your restless legs. There may be some drowsiness at first, but that will also help you get to sleep. Please do not be discouraged because there is going to be some help from certain combinations of drugs. This is a wonderful forum, and you have some very knowledgeable people who can be of help to you. I am a firm believer in prayer and I pray that you will get some help and get some good sleep.
Thanks so much
RLS Any tips other than medication?
Tips to manage restless legs
Possible urgent need to come off pramipexole: any tips please.
Strange - but effective...
