Ireland calling

[Seanpg]

I have been suffering RLS for years and using mirapexin for treatment but I don't like it. I want to change but can't find a specialist in Ireland to help.

Has anyone on this forum from Ireland had any good contacts.

Tia

[SueJohnson]

Madlegs1 has said "Sleep clinics are where to aim for. You will have to check online or ask the GP clinic to refer you to one. All the other options know fizz all about RLS."

Pain clinic in Tallaght hospital Dublin, Ireland. Camilus Power Head of the Dept was the consultant.

Dr Jamie Campbell, is in Kingsbridge private hospital Belfast, Ireland. But does not prescribe buprenorphine which you might need.

[Seanpg in reply to SueJohnson]

Thanks for reply

I will explain more.

I am 57 I have had RLS as long as i remember, initially it was only when very tired as a teenager. But in later years it effected my life in a big way, i couldnt sleep or watch a movie and my wife was treathening divorce ( kidding ). I went to a well known sleep professor in Dublin for a sleep study but they were mostly interested in sleep aponea and RLS was just an inconvienence, they prescribed Mirapexin 2* 0.088 mg a couple of hours before bedtime.

This does not help the early evening , I have had night terrors , compulsive behaviour and left feeling like a hangover the next day. I am tired most days my head is cloudy and i have put on a lot of weight. I cant say it is all due to Mirapexin but it feels that way.

I have been on this dose for about ten years now.I would like to get away from it but trying to find someone in ireland who understands or is willing to listen to another patient with Google recommendations is proving hard.

I am not in a position to tell my doctor what to prescribe.

My GP has done Iron tests before and they are "OK" . Trying to push further is beyond our relationship.

This is why i was looking for someone in Ireland who has already found a sympathetic GP or consultant.

Over the years i have tried all sorts of magnesium , calcium, tight socks anything that i can.

I have similar triggers as most people , sugar , caffiene ,alcohol, too much exercise and not enough exercise. One temporary fix was from an old woman , if you can engage your mind in something at the time you would expect the onset,

She would start an arguement with someone each evening about 7pm, and confided in me when she noticed i would always stand instead of sitting. She said in the old days she could get Quinine which worked but is not allowed anymore .

I know of another man where i work with the same condition and frustration, he is also frustrated looking for help in Ireland.

Thanks again for taking the time

[SueJohnson in reply to Seanpg]

You absolutely need a new doctor. Try one of the 2 I suggested or ask Madlegs1 who his doctor is.

but you don't need to wait until you get one to start coming off mirapexin. Start now.

You don't tell your doctor what to prescribe. Instead you take a copy of the appropriate sections of the Mayo Algorithm and say you understand from it that the Mirapexin can cause the symptoms you are on and that gabapentin/pregabalin are now the first line treatment for RLS.

And in Ireland you have a right to know what the figures were from your iron tests . What is OK for others is not OK for those of us with RLS. So insist on them. And if s/he refuses report him/her to the appropriate governing authority.

Your symptoms do sound like a result of the mirapexin.

Love the old woman.😀

[Seanpg in reply to SueJohnson]

Thanks Sue

[Madlegs1]

Sue says it all!

There are a few Irish members on here who may have a sympathetic doctor.

The only finding I've ever got was for a sleep clinic in Dublin a few years ago. You could start by trying to locate it.

Good luck.

And come back to us if you find anything useful.

I was lucky in having a compliant doctor GP, who was happy for me to do the research and he would prescribe whatever I said.

So ,you need to educate yourself.

Start by reading up any of Sue's replies to many posts on this site.

[Seanpg in reply to Madlegs1]

Can i ask what are you using at the moment and is it working.

[Madlegs1 in reply to Seanpg]

I'm on opioids--+ Oxycontin 10mg by 2 and Oxynorm 5mg by 1.

But that is because I had a life-changing accident and new metallic spine all in one go - and for free!!🤪

So I was put on painkillers but I have persuaded the doctors to continue because of RLS -- which they accept.

I think your course of action would be to get off mirapex and try for Gabapentin . Pregabalin is horrid price here, unless you have a medical card.

The Pain clinic in Tallaght run by Camillus Power might be worth a try, but I've been waiting for over a year to just get back into the queue, so maybe not much help.🤕

[Seanpg in reply to Madlegs1]

Thanks madlegs

[SueJohnson]

You don't give any information about your RLS but you do mention mirapexin. I suspect and I may be wrong that you are augmenting from it and in any case it apparently isn't covering your symptoms or you wouldn't be asking for the name of a doctor, so let me give you the advice I would give in that case.

The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

You need to come off it as it will only get worse. How much are you taking?

First off check if you are on the slow release mirapexin. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole (pramipexole) because the slow releases ones can't be cut.

To come off mirapexin, reduce by half of a .088 [.125] tablet) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Ropinirole and pramipexole (mirapexin) are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations.

The 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.)] Start it 3 weeks before you are off mirapexin although it won't be fully effective until you are off it for several weeks. After you are off mirapexin for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1-2 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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. 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 not ask your doctor 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. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

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 as yours obviously isn't or s/he would never have prescribed a dopamine agonist 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.

[Seanpg in reply to SueJohnson]

Sue , I am also on Valsartan Krka 80 mg and Amlodipine Teva 5mg daily for high blood pressure, would you know if these are bad for RLS ?

TIA

[Seanpg in reply to Seanpg]

And also Drynol bilastine 20mg for hayfever ?

[SueJohnson in reply to Seanpg]

That should be OK.

[SueJohnson in reply to Seanpg]

As far as I know Valsartan Krka is fine but Amlodipine is a calcium channel blocker which make RLS worse for some but not all.

Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....

[Seanpg in reply to SueJohnson]

Thanks again Sue

[LotteM]

Hi Sean, you don’t say whereabouts in Ireland you live. If in or near Dublin, you may try to locate InvoluntaryDancer on this forum. She used to be very active on the forum, but is now a silent member. If useful, I can try to get her to contact you. She has a very supportive and accommodating GP. In Dublin.

[Seanpg in reply to LotteM]

Thanks LotteM , I'm in Carlow about an hour from Dublin and would happily travel for help.