Private care

[nick-the-turk]

Hi all been under the doctor lately my legs have been uncontrollable day and night only to be told that they've prescribed me everything they know of for RLS and now giving me antidepressants because as you all know sleep is nonexistent and my mood is horrible with no more than 3 hours sleep and all they do is make my docile through the night and drowsy in the mornings effecting my work life. Seen a neurologist who carried out a CT scan on my head and mri scan on my back ? but not had any update from him. I mentioned to my doctor about the mayo clinic report on RLS but I can only imaging that fell on deaf ears. Still taking pregabalin and codeine phosphate in desperation really anyway my next move is asking you good folk on here from the UK do you know of any private clinics or doctors who could help me somewhere in the south West of the UK would be great thanks people

[SueJohnson]

You might need to switch to a different opioid. I remember Joolsg recommended Buprenorphine to you. Did you ever try that? Also - if you are still taking 150 mg pregabalin in the morning and 300 mg at night, why are you taking pregabalin in the morning? If you didn't have problems in the daytime before you started any medicine, then you don't need it then. Try adding it to your night time dose and see how that goes. In any case you can increase by 25 mg every couple of days to a total of 600 mg a day. If that doesn't work, then you might as well come off it if it is not helping. But do so very slowly or you will have withdrawal symptoms. If done slowly enough you won't have any. What antidepressant are you taking? Most will make RLS worse for most people. There are only two that don't.

[SueJohnson in reply to SueJohnson]

And Joolsg gave you the 2.

[SueJohnson]

Another one to try is dipyridamole. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... movementdisorders.onlinelib...

[SueJohnson]

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, , 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, 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, 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, using a standing desk, listening to music, meditation and yoga.

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.

[nick-the-turk in reply to SueJohnson]

Thanks sue I can only be guided by my doctor who i don't think has a clue about RLS and just fobs me off I was seeing one in the same practice that was really helpful and had some idea of treating RLS but has left the practice and I really don't know my next move I did say to the doctor today that he just as well prescribe me a length of rope and a tall tree thats the way I felt after talking to him ( phone conversation by the way )he has prescribed me mirtazapine but now changed to citalopram I walk give or take around 15 miles per day being a postie so the excessive excercise could be a factor and have I the right to ask my doctor to try meds you have mentioned on here ( being that he in his words has tried everything he knows for RLS ) many thanks once again nick

[SueJohnson in reply to nick-the-turk]

Citalopram can make RLS worse for some although somewhat better than mirtazapine. Sure you have the right. You are the patient. He can always refuse of course. I would love to know his reaction to the tall tree remark. LOL.

[SueJohnson in reply to nick-the-turk]

No only vigorous exercise make RLS worse. Walking will help.

[nick-the-turk in reply to SueJohnson]

Honestly his answers were really poor clueless even ! Maybe i am not good a explaining things but I also told him that unless you suffer its hard to explain but some nights you could cut your legs off and the depression feeling is secondary its the RLS that's the main factor you can give me all the antidepressants available but my legs still keep me awake the only difference is during the night instead of punching and kicking things I'm staring at walls so drowsy I feel like a zombie with moving legs than at 5 in morning I have to get ready for work there not understanding about it and are on my back because I'm lethargic at work having said all that his answer was the same many thanks once again for your kindness

[Grammieof4 in reply to nick-the-turk]

as Sue said, citalopram can make RLS worse. I had to stop taking it. I now take Buproprion but not sure you can get that in the UK

[nick-the-turk in reply to SueJohnson]

I have read maybe on the mayo clinic that they have done trails on small doses of methadone and RLS with great success was that in the UK or if not will trails be held in the UK

[SueJohnson in reply to nick-the-turk]

I'm afraid I don't know the answer to that.

[TheDoDahMan in reply to nick-the-turk]

My doctor is one of the authors of the Mayo Clinic paper. He prescribes me 10 mg/day of methadone and overnight I began to have 8-9 hours of restful sleep instead of 2-4 hours of fitful sleep. That was 4 years ago and still works without any tolerance build-up. For some reason, UK doctors won't prescribe methadone for RLS, but there is an equivalent amount of buprenorphine that has helped many in the UK. You may have to fight to get it prescribed, just as I had to fight to get the methadone prescribed. The so-called "War On Drugs" has made it extremely difficult for those of us who have a legitimate need for opioid therapy.

[Joolsg]

Nick, see Prof Walker at Queen Sq London by phone. RLS doesn't require FTF. He can discuss everything over the phone. He prescribes iron infusions and low dose opioids ( Targinact or Buprenorphine) and he'll prescribe a safe anti depressant because SSRI, SNRI and tricyclical ADs all tend to worsen RLS. Trazodone or Bupropion are RLS safe.But if you control the RLS, the depression will lift, I'm sure.

[nick-the-turk in reply to Joolsg]

I will google him today and put the wheels in motion many thanks

[Joolsg in reply to nick-the-turk]

Nick, there is hope. Oxycontin and pregabalin didn't work for me. I wasted 5 years struggling on 4 or 5 hour's broken sleep every night.Shumbah was in exactly the same position and Buprenorphine worked miraculously for her.

I started it in July last year and it worked immediately. No RLS at all.

Side effects of severe nausea and vomiting the first week, but medical cannabis stopped that. Panic attacks and anxiety hit shortly after but I added a small dose of pregabalin and it worked.

I really think you need to switch to an opioid now and hopefully one of the neurologists will help.

If they suggest stopping the pregabalin, ask for 25mg pregabalin pills and reduce very slowly over at least 3 months to avoid any withdrawal effects.

(I reduced from 150mg by 6.25mg.every 2 weeks by cutting pill and dividing the powder).

[nick-the-turk in reply to Joolsg]

I have an appointment 13 feb a catch up to see how the antidepressants he's prescribed now are working and I will definitely show him the list of the meds you've mentioned and fingers crossed he may try one but I suppose that will depend on there budget lol and having a full time job as a postman if he feels it would meet my needs not once in the 20 years I've suffered has doctors not offered any break from work in the shape of a sick note and its been bloody hard going carrying out a full time job in all weathers on 2 maybe 3 hours broken sleep per night !l am desperate now for answers and feel I've been to soft with doctors over the years and feel now its time for me to be heard

[Jelbea]

Hi nick-the-turk - It sounds as if you are pretty miserable at present with all your suffering. You asked about private care and I see that Jools has sent you an answer about this. I would also suggest Prof. Matthew Walker at Queen Square. Look him up on internet. I am in Northern Ireland and have had two telephone consults with him. I would have liked to see him in person but I am immunosuppressed and cannot travel. He was very helpful and spent an hour with me on the first telephone call (which can be a zoom call as well I think). He does see patients on the NHS at University College Hospital but there is a much longer waiting time. He does know what he is talking about and will point you in the right direction to get much needed relief.

Good Wishes to you

[nick-the-turk]

Thank you I will look him up

[Dotmowatee]

Dr Robin Fackrell at The Circle Hospital Bath is excellent. You would have to pay. An appointment can be made by email. I find Targinact works well.

[nick-the-turk in reply to Dotmowatee]

Thats well within travelling time for me many thanks

[LotteM]

Good suggestions about drs Walker and Fracknell for you, Nick. In the UK it is not like in the US with an extensive network of quality care centres for RLS. Although the lack of knowledge among gps/pcps is similar, unfortunately. I hope you can get a consultation with any of the two soon. Given your long history and failure of multiple medicine treatments, opioids (stronger than codeine) seem your way to go. Hopefully they won't give you much trouble (meaning: unbearable side effects).

As the antidepressants only seem to make you drowsy, can you stop taking them? Or do they make the nights a nit more bearable? If only drowsy, consider not taking them any more, as the longer you take them, the harder it is to stop. Even if a doctor prescribes, you are not obliged to take the medicine. And I recognise your description: RLS is the problem, the low mood etc secondary to the lack of sleep. And that you are probably not intrinsically depressed. The antidepressant may actually make your RLS worse, although the difference at this time may not he noticeable due to the already badly controlled RLS.

Try both drs and see where you can get in first. Will you let us know how things proceed? Meanwhile, wishing you strength with your restless nights. It must be difficult to have to go through that yet again!

[nick-the-turk in reply to LotteM]

I have a rest day today from work and plan to try and contact both Drs many thanks for your help

[LotteM in reply to nick-the-turk]

Good luck Nick. Hang in there. You've been there and survived before, but it is extremely frustrating that you have to experience the loss of effectiveness of tue treatment again.

[Bowie4eva]

Hi Nick, no more helpful info to add, only sympathy. I am the same. I am taking iron at the moment to raise my ferritin levels, will be tested beginning April to see if I need an infusion, will let you know how it goes. I’m taking 300mg at night, but last night I may as well have not bothered.

I’ll post re the ferritin in April. I have all but lost hope of this ever improving, but I’ll try everything, including opioids. I wish someone in our NHS would take RLS seriously. It is worse than my MS symptoms, and others on this forum have said the same.

Anyway, I’m probably doing sweet FA to help your depression, just wanted you to know you weren’t alone!! And do try everything recommended on here. I am using a magnesium and lavender spray in my legs when it gets really bad, which doesn’t cure but is better than nothing!

I am about an hour east of Bath, let us know if anything good.

Keep smiling Nick and hope you have a good and restful weekend!!

[nick-the-turk in reply to Bowie4eva]

Thank you I to am about an hour from Bath so not far im in the somerset area

[Jumpey]

Good luck with whichever doctor you choose to see. Hang on in there.Help and hope is in sight.I agree I think you need a stronger opioid. I used to take codeine and eventually it stopped working. X

[Jetto]

Immediately go to RLS.org and find a RLS specialist near you.

[SueJohnson in reply to Jetto]

That only helps if you live in the US or in Switzerland or Austria.

[Eryl]

Your doctors could be barking up the wrong tree. Your rls may be due to infamed nerves being hyperensitive and not due to faulty transtission. Inflaed nerves are just one part of systemic inflammation which can be caused byhigh blood sugar levels fro the ingrstion of to much carbphydrate (especially refined carbohydrate as in bead and other foods containing white flour) or refined seed oils whic cause oxidative stress and may contain gyphpsate weedkiller residues. I have completely eliminated my rls by changing my diet to avoid inflammatory foods.