RLS specialist in Ireland

[Minijackrussell]

my husband has severe rls and is currently off all meds. He had been on pramapexole for two years and developed augmentation and we managed to get him off it about a year ago with huge doses of gabapentin and awful withdrawal. We eventually weaned him off the gabapentin as it did not seem to be helping and he was having bad side effects. He has tried many non pharmacological remedies including oral iron with little to no relief. My query is does anyone know of a rls specific neurologist in Ireland, where we live or Uk(we would travel or zoom) who he could have a proper consultation with as he does probably need support with his severe rls as it’s having a major impact on his quality of life! We get about 2/3 hours sleep a night currently. His current neurologist does not seem to grasp the severity of this illness. This forum is really helpful and I regret not coming upon it sooner. Thanks for all your help and support. Olga

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

I'm sure others will be along to suggest doctors. So let me address other things.

You say he took iron and it was no help but has he had his ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving ones ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when he sees his doctor ask for a full iron panel. 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 his test in the morning before 9 am if possible. When he gets the results, ask for his ferritin and transferrin saturation (TSAT) numbers. He wants his transferrin saturation to be over 20% but less than 45% and his ferritin to be at least 100. If they are not, post them here and we can give him some advice.

You said the gabapentin didn't help and had bad side effects. It won't help while he was on pramipexole and for awhile after he stopped and he may not have taken enough. The usual effective dose is 1200 mg to 1800 mg taken in divided doses of 600 mg 2 hours apart. He might want to try pregabalin. Although it is basically the same drug except you don't 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.

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, 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 makes his RLS worse.

Many medicines and OTC supplements can make RLS worse. If he is 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.

[Minijackrussell in reply to SueJohnson]

Many thanks for your speedy in-depth reply Sue. I will show to my husband and there’s loads I need to look at from your reply. He has has bloods done in the past which were all ‘normal’ but I might repeat everything (I’m a nurse) and get a new baseline for him and see where he’s at. How long does he need to be off the oral iron would you suggest? Massage does help him but it means we are awake very late massaging his legs and sometimes it makes no difference at all! It defo helps him reading this forum knowing that he is not on his own and most doctors see this as a ‘benign’ condition therefore don’t get invested in sorting it out for the patient especially as it’s very individual to each patient. I believe sleep is the super power of health and everything else such as diet, mental well being, exercise, relationships, work etc is improved if sleep is adequate.We are determined to get the rls under control and improve our quality of lives.

[SueJohnson in reply to Minijackrussell]

Even if his ferritin was tested which is not done for normal blood testing doctors will say it is normal but what is normal for others is not normal for those of us with RLS.

[Minijackrussell in reply to SueJohnson]

Tnx again Sue, I just checked his ferritin was 111.3 in 2020 and 157.7 in 2023. I’ve no transferrin saturation numbers but will aim to repeat these bloods soon.

[Zyxx in reply to Minijackrussell]

Wow, can’t believe some doctors see this as a benign condition. It’s agonizing.

[Minijackrussell in reply to Zyxx]

I know!!! Especially as sleep deprivation causes a myriad of chronic illnesses!

[Joolsg]

I know 2 or 3 in the UK, but as you're in Ireland, they won't be able to prescribe opioids to you as we have different health systems.Involuntary Dancer & Madlegs may know a good Neurologist in Ireland.

[Kaarina Administrator]

The only name I have is Prof Shaun O'Keefe, a Geriatrician , not a Neurologist but he did have an interest in RLS but as far as his expertise goes is not known .....

Merlin Park University Hospital, Merlin Park, Galway.

[Minijackrussell in reply to Kaarina]

Thank you

[Madlegs1]

I'm from Ireland and so far there is no-one with an interest in RLS among the medical fraternity,that I know of.

I asked this same question about 7 years ago

Nothing since.

I get opioids for pain relief from Camillus Power in Tallaght, and my GP now accepts it is for RLS. But since I don't present with RLS any more, he doesn't get any feed back.

I must actually raise it with him ,next time I'm in.

[Minijackrussell in reply to Madlegs1]

Thank you for your reply. What opioid are you on and also the dose please? I suggested opioids to our gp and neurologist and they both separately looked at me in disbelief but had no difficulty abruptly stopping pramipexole and my hubbie had acute withdrawal!! It is great to get other peoples perspective and to learn from it. Thank you.

[Madlegs1 in reply to Minijackrussell]

I'm on Oxycontin 10mg ×2, and Oxynorm 5mg ×1.

[Retiredlady in reply to Madlegs1]

Do u take your Oxycontin12 hours apart and find it doesn’t last that long?

I take mine at 9pm and always symptoms return 5-6 hours later and need to take a codeine( 30 mg) to help get through the night. Think I would be better taking Oxynorm instead of codeine.. hoping to convince my specialist to prescribe that as well.

Presume u take the second OxyContin to help during the day?

[Madlegs1 in reply to Retiredlady]

Oxycontin is designed to last 12 hours, but for many it only lasts about 9. That is so in my case. I take the 2 Oxycontin and make up the shortfall with the Oxynorm.

So, Oxycontin 10 at 10pm, Oxynorm 5mg at 6 or 7 am, and the other Oxycontin at 1pm.

I have considered taking the Oxynorm 4 times a day, but haven't got around to discussing with my pain specialist, who would have to ok it.

It would just mean I would be taking less opioid overall, but a bit of a nuisance in the middle of the night.

Although,I find I can push the Oxynorm up to 7 hours before feeling too ansty.

Good luck with whatever you decide.

If you are finding that the Oxycontin is not lasting ,then you could potentiate it with paracetamol 300, to make it last longer. Better than pushing more opioids into your body with codeine.

[Retiredlady in reply to Madlegs1]

Thanks Medlags, do u mean take a paracetamol with my Targin at 9pm?

I did try that a few times but symptoms still returned 5-6 hours later.

Thinking of switching across to Buprenorphine to get 24 hour relief and my life back!Have appointment with my sleep specialist tomorrow to discuss this.

Your thoughts??

[Huntingleroy]

Hi , Ive been through augmentation and now take 0.4 mgs sublingual tablet of Buprenorphine. Totally changed my life after over 20 yrs of Rls hell. Like your hubby sometimes massage helped but sometimes I couldnt bear them being touched. Getting opiates wasnt easy but I fought and fought and finally won ! 4 months of sleep finally ...pure bliss ! ( not just for me but for my long suffering husband !)

[Minijackrussell in reply to Huntingleroy]

Thank you for your reply, really glad you are getting sleep

[gardening57]

Hi My husband has had RLS for 15+ years on DAs augmented twice. And was diagnosed with Parkinson’s disease 5 years ago. He is working with Professor Bradley neurologist and his team at St James Hospital in Dublin we are happy with his care there. I don’t know if Bradley sees private patients. Previously we saw Dr Timothy Lynch privately He is associated with Dublin Neurological Institute. He was the one to prescribe an opioid originally 4 years ago. He is knowledgeable of Mayo Clinic RLS guidelines as is Bradley. We also saw O’Keefe in Galway once or twice in consultation per Lynch’s suggestion We are managing ok with the RLS and PD some nights poor with a cocktail of meds including Neupro patch - currently weaning down the dosage gabapentin, Targin and Levodopa. My husband has had iron infusions x3 with fair response over the years. I think stress and exercise play a big factor as well as diet. There is a lot of helpful information and support on this forum. Best wishes

[Minijackrussell in reply to gardening57]

Thank you so much for this info, it is very helpful

[SoundsMusic]

I’m in Ireland, age 62 and have had severe RLS for years. My GP has tracked my RLS journey down through the years with me. Tried all the non med interventions - cut out salt / sodium and took magnesium supplements (300mgs p/day) with Vit b6 which took the edge off it for a while. RLS developed into my arms as well about 5 years ago and I began pulling muscles in my lower back, shoulders, arms and groin along with unbearable exhaustion and sleep deprivation - every joint and muscle in my body sore. Couldn’t find an RLS specialist in Ireland. Went to see a neurologist who prescribed Pregabalin - too many side effects - brain fog etc - changed to gabapentin which didn’t suit me either. I refused dopamine agonists as my mother was on them for years before she died and had what I know now as augmentation. I did months of online sessions with Dr Monk in UK during Covid who is a medical doctor and acupuncturist specialising in RLS. His treatment involves using a small TENS machine - he shows you which acupressure points on the legs to place the electrodes. We tried a host of options. Many of his patients improved but my RLS was the worst he had seen and while I got occasional mild relief it wasn’t enough for the scale of my symptoms. I was keeping a diary of my RLS symptoms and all the research I did to find anything that would work. I read about methodone but no neurologist or GP would prescribe it. Then my brother sent me a link from bbc youtu.be/hnTKtp5PZGo?si=5a_...(Not working as expected?) - that was where I heard about buprenorphine for first time. Started reading up on it and found Mayo Clinic we’re endorsing it for refractory RLS. Printed out shed load of articles on it and gave them to my gp. She agreed to prescribe it for me a few months ago when I was literally at my wits end.. Subutex sublingual tablets 0.4mg. This dose was too high - I vomited and had nausea - reduced (cut tab in half) dose to 0.2mg - was still too much so cut the tabs in 4 tiny quarters so I’m taking 0.1mg each night at 9pm - immediate miraculous results - no RLS anymore. My sleep pattern has been so dysfunctional for years that I still waken throughout the night but my limbs are not agitated anymore and I can rest peacefully in the bed and occasionally I get 3 hrs uninterrupted sleep which is amazing. My advice is that you draw up a folder of your husbands RLS history including the Mayo Clinic articles and any information Jools and Sue Johnson generously provide to us all on this forum and talk through it all with your gp - he/she may agree to prescribe buprenorphine without your husband having to go to a neurologist. GPs have a relationship with us and know our med history - we’re strangers to consultants. I shared the video in the link I’ve included in this post with my gp and I think it was that that persuaded her to agree to prescribe it for me. Buprenorphine - even the tiny dose I take - has been life changing for me.Best of luck

[Minijackrussell in reply to SoundsMusic]

Thank you so much for your story and I agree that we need to track his journey and use the Mayo clinic severity tracker to get a picture of his rls. His sounds exactly like yours with it in his arms, legs, back and chest. It is quite severe! I’ll start tracking his night time movements. I’m getting many ideas and support from this forum.

[SueJohnson in reply to SoundsMusic]

Can you tell me who you saw so I can add it to my list of doctors in case someone else asks in the future.

[SoundsMusic in reply to SueJohnson]

I’ll ask my GP if they are happy for me to forward their details to you for the forum. I know they have closed the practice ie not taking on new patients as they are full but they may make an exception for those with RLS

[Doped]

Hi, I so sympathise with your husband, I've had rls for 40 years getting progressively worse, I've tried just about all the meds and none agree with me. I'm coming off Neupro at the moment and it's not easy. I'm looking into natural remedies and have noticed an interesting pattern between the gut and meds that exacerbate rls, anti depressants, anti histamines, proton pump inhibitors etc all effect the microbiome and send rls through the roof. I know of one person who went vegan and her rls disappeared. It's a long shot but I find it interesting. I'm also in Ireland.

[Minijackrussell in reply to Doped]

Thank you for your reply. Yes we’ve tried a good few non pharmacological remedies etc and nothing is really changing things although we haven’t given up trying. I was going to increase my husband’s red meat intake to increase his iron!!! He couldnt be vegan, he loves meat but it is interesting alright. Tnx for your reply. Good luck with the Neupro wean, night by night.

[Doped in reply to Minijackrussell]

I've been trying to link my rls to various foods over the years, to see if there's a pattern, and I haven't come across anything yet, sometimes I blame a particularly bad night on something I've eaten but I could have a relatively 'good' night having eaten the same food. I had two iron infusions a couple of years apart and unfortunately didn't notice any difference but maybe when I'm finished with the neupro I could try it again. I'm going to have a sleep study done soon, this was recommended by my neurologist, why I'm not sure. I hope your husband finds something that helps, oh for a full nightl sleep!

[Dgb51]

I am taking magnesium (250mg) twice a day. It has helped me greatly! I, also, take ropinerole (8mg). I want to replace the ropinerole with something else.