Hello,
I live in Bruges, Belgium, and am looking for an RLS expert. I have used the expert finder, on the EARL site, but there don't seem to be any specialists listed in this country. I would be willing to travel to another nearby country, but I'm not sure how that would work with health insurance and prescriptions. Any help is appreciated!
Eljay.
I hope that someone here can help you - perhaps Mikatrap can advise? If he doesn't see this tag, you could try contacting him via the Chat function - but he's been in and out of hospital and has been struggling to get off dopamine agonists.
Before reading beyond your first sentence I tried the EARLS Expert Finder and found, as I see you did, no one listed in Belgium:
You'll have seen from their interactive map that there are some resources in the Netherlands but nothing listed is very close.
IF no one here can help, with EARLS HQ being in Brussels perhaps if you complete their contact form they might have a suggestion:
Thank you so much, Chris Columbus! How kind of you. I'll contact Mikatrap if I don't hear from them here. I did use the contact form for EARLS, thanks for the suggestion. It's kind of ironic that the EARLS HQ is in Belgium, yet no experts here, lol!
Thank you again. ☺️
Here in the UK few doctors - and even neurologists - know much about RLS, and they mostly rely on outdated sources.
It's often possible to get better advice in this forum than available from a doctor - from people who have experienced all the symptoms and treatments (good and bad) and read the latest research - which can then be used to try to educate a local doctor.
You dont seem to have posted or replied here for a while: if you don't get a recommendation for a good doctor in Belgium, just try asking specific questions in this forum.
Good luck.
Thank you Chris. I'm basically look for a specialist because I need to be treated with opiates. I'm currently prescribed codeine 30mg a day, but this is just not working. I have rls until 5am currently, and codeine lasts about 3 hours. So looking for someone willing to prescribe tramadol or even methadone, both of which are excellent treatments for rls. I do have a Neuro who prescribed the codeine, but can't get in until Sept. and I don't know that she will be willing to rx me. I've only seen her once and had to ask about codeine. I do have articles about these meds to present to her! Thanks again. 😊
BTW, I never received a reply from EARLS HQ, so I wrote them again today,
Good luck! (I believe that EARLS used to administer this site - indeed their logo still appears at the top of the page - Joolsg do RLS-UK have a hotline into EARLS that might help Elsie to query RLS support in Belgium?)
Unfortunately not ChrisColumbus. However, Lotte has given a contact nearby.
Thanks Jools - I'd missed that!
And they still haven't replied. 😕Thanks for the help, guys.
Zurp111 is another forum member who lives in Belgium but hasn't posted or replied to anything in the last year but from looking at those I doubt he has a good doctor, but you could message him to find out.
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 ask your doctor to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 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 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. (You don't need to split the doses with pregabalin)
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 (200 to 300 mg pregabalin)."
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...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, 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, C, 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
My apologies ahead of time for the long reply!
Hi Sue,
Yes, I have my ferritin checked every year. It's fine now and my most recent was 165. I got rls in 2007 after donating too much blood. I was slammed with it, and long story short, I ended up in a psych ward with strong suicide ideation. I ended up on klonopin and seroquel, and I finally was able to sleep, which saved me. Strangely, the seroquel didn't seem to aggravate the rls at that time, thank god. The main problem, in hindsite, was I cold-turkeyed my ssri, after learning it's a big trigger. But of course that only made things worse, severely worsened my sleep and of course more rls. On my own, (following advice from rlshelp.org and the wonderful Dr. Buchfuhrer), before even getting tested, I knew it was from the blood donation. I put myself on high-dose ferrous bisglysinate. (in my defense, I'm an RN, lol!) I did this for three months. Halfway through, my ferritin was only 10! When I was done, it had gone up over 50.
Eventually, I mostly healed mentally and physically, and just have had occasional, mild rls. Since then, the only time I would have an increase in rls was when I tried to reduce my lexapro (which I had eventually started up again back then. I'm also on Wellbutrin), but I always got over it after a week or two of cutting. I always went pretty slow. Two years ago, I had some severe depression d/t financial issues and my P-doc raised me to 20mg (from 15). Last year, feeling better, I decided to taper to 10mg which is my baseline dose. After that, I ended up going back up to 15mg for some depression symptoms again, but recently tapered back down again. I've always done these tapers in a slow and methodical way (probably not slow enough though) I would only make another cut when the nausea and brain zaps had subsided for at least a week or two.
So, I think all this relatively recent yo-yo-ing, even though I did it carefully, is probably mainly why this is happening now. The last several days have been the worst rls of my life, and going to a very dark place. I went to GP, desperate, and he spoke with my neuro and they moved my appt up to this Friday! (from Sept.) I told him I need opiates, promising him I wasn't drug-seeking, lol. I think he agreed, but I think as a GP he was just a bit uncomfortable about prescribing. I'm so grateful to him for contacting my Neuro. My neuro is the one who prescribed the co/codamol, so I think she will be open to Tramadol or even better, methadone. My main goal is to get off my ssri, or at least to 5mg. It may not totally resolve my rls, but there are so many other benefits to getting off it it. I've been on ssri's for 23 year, enough! And then of course I will get off any opiate I might be one.
No way on the dopamine agonists! I tried those once early on, but the stupid doc started me on 1mg requip (a Parkinson's dose!) and I puked all night. And I know all about augmentation, so, a big no on that. Thanks.
I was prescribed lyrica last year, and since my rls wasn't that bad and I hated the side-effects, I stopped. Have a bunch left over so I started those again a few days ago. Last night I went up to 75mg and only had one breakthrough at 2am. took one co/codomal and I slept the rest of the night. My best night in a long time! Except now I have a terrible lyrica hangover. But frankly, it's worth the trade-off now. Sleep is the most important thing, right? I'd like to ask the neuro if I could do a combo therapy of low-dose lyrica and a low-dose opiate. I just can't tolerate more than 75mg of lyrica, and that doesn't quite cover me. But when I moved to 100mg last year, I couldn't handle it.
Anyway, thank you so much for such great info and advice. I have tried pretty much all of your suggestions, and still do many, like most of the vitamins/minerals. I know which meds and otc's to avoid. I actually used to carry a medical emergency card that you can print out from rlshelp.org. so you don't end up in a hospital from an accident and you are given a dopamine antagonist! Yikes! A couple of years ago, I found out that melatonin was a big aggravator of rls! Didn't know that and had been taking it half my life. restlesslegssyndrome.sleep-....
Thanks Sue, (and Chris!) Take care!
Since you are having side effects on lyrica, you might want to try switching to gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Multiply the lyrica amount by 6 to get the correct dose. You can switch directly. 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. If you take magnesium, even in a multivitamin, don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. If you take calcium don't take it within 2 hours for the same reason.
I hope you are able to get the tramadol or buprenorphine. You have certainly been through a lot. My fingers crossed for you🤞
Thank you so much for your kindness, Sue. I'll talk to the doc on Friday and you know how it goes. ☺️
I just wanted to let you know that opiates are a no-go with my neuro doc, except for co-codamol. I even showed her the updated rls treatment algorhythm. So I'm now on that and Lyrica. I'm still having breakthrough during the night, and I'm hesitant to take extra codeine when it happens. I just need to do it, I guess. I'm prescribed 60mg limit. (2 x 30/500) I re-read what you wrote about Lyrica and it's very helpful, thanks. I'm on 100mg currently but will probably have to go up. I don't want to take more than 150mg so hopefully that's all I wll need with the back-up codeine. Take care, Sue!
Did you ask about switching to gabapentin? Were you able to contact Mikatrap or Zurp111?
She actually mentioned Gabapentin to me, but at that point I had already started up the Lyrica again, so decided to just stick with that for now and see how I do. I messaged Zurp111 a few hours ago and will message Mikatrap now. Thank you so much for all of your help, this is such a supportive forum!
Mikatrap responded to me with some welcome information!
Great.
From Mikatrap's latest reply where his doctor kicked him out of the hospital and said he wouldn't be his doctor if he didn't increase his Neupro and he is suicidal, that doesn't sound like a great doctor. Did Zurp111 ever reply. Did you ever find a good doctor?
Wow, Sue, thanks for the plethora of info! I'm responding now....I do know much of what you wrote, but some of it is new to me, thanks!
Hi Elsie, I am in The Netherlands and connected to the Dutch Stichting restless legs. As one of the expert patients, we keep a list of knowledgeable doctors/hospitals/clinics re RLS. As I am away from home atm, I cannot access the file. Will do so later, and let you know the nearest options.
Hi Lotte, wonderful thank you, neighbor!😀
Sorry it took a while.
I had a look on our list. I think your best option would be to contact the Valeo kliniek in Goes: valeokliniek.nl/rls. Their main specialist, Chuck van de Vlasakker, has retired, but the other specialists have worked closely with him. They do teleconsulting, although you may have to go there in person for the first consultation.
BUT, I also saw on our list two other recommendations for Belgium/Vlaanderen:
Sleep centre of the Universitair Medisch Centrum Antwerpen, dr Ilse de Volder, uza.be/behandeling/restless...
Sleep clinic of the Universiteit Ziekenhuis Gent, uzgent.be/patient/zoek-een-....
None of the doctors of the hospitals in Antwerpen and Gent has RLS in their list of specialisations. The Stichting RLS has received the best recommendations for Antwerpen.
Incdentally, I read through all of this posts with your replies. And, given your description of contstant and a bit yoyo-ing depression, you may want to discuss buprenorphine. It is claimed to also have a slight antidepressant effect. At a quick search I found this review paper published in 2018: ncbi.nlm.nih.gov/pmc/articl...
Would you mind to report back about the hospital/clinic and your treatment? Thanks.
Thanks so much, LotteM.
Dr. van de Vlasakker is the doc I was going to contact! I actually just made an appointment with a Neuro sleep disorder specialist in Bella Vita Medical CenterAllée André Delvaux 16,1410 Waterloo. Her name is Charlotte Smetcoren. It's only in Sept. though. I'll look into the one in Antwerpen too, thank you so much. As for buprenorphine, yes, that was one I was interested in too. I actually printed this out
neurologyadvisor.com/report...
and showed it to my GP. She looked horrified and then referred me to a neuro. The neuro looked horrified too! 😂 Sadly, as you and others here know, most doctors are ridiculously underinformed on RLS. They don't keep up with their medical journals.
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