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Restless Legs Syndrome

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restless1973 profile image
27 Replies

Please could one of you lovely people please give me the names of some rls friendly anti ds please. Got to doctors and didn't have any names with me and cannot find them. Thank you.

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restless1973 profile image
restless1973
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27 Replies
Kaarina profile image
KaarinaAdministrator

Hi restless 1973

I believe Wellbutrin and Trazadone are " safe " and will not worsen RLS.

For most sufferers, Mirtazapine (Remeron) will not worsen RLS.

I hope this is correct information.

in reply to Kaarina

You are correct Kaarina, but if in the UK then Wellbutrin is not available. :)

in reply to

Yeah its available as Zyban:

evidence.nhs.uk/formulary/b...

in reply to

But not for RLS, raffs, from my understanding only used for stopping smoking.

in reply to

It is and it isn't. If I recall correctly it can be prescribed 'off label' not for RLS but depression.

As far as I am aware no anti-depressants are used to treat RLS, or have I missed something?

in reply to

You are right raffs. I meant to say not used as a anti depressant here in the UK. People have asked they docs and been told they can't have it.

in reply to

It can be prescribed 'off label' if not by a GP then a psychiatrist will be able to do so, the caveat being that there is not some postcode lottery going on and your area wont do it.

I cannot get my head around the fact that so many people keep allowing the postcode lottery!

Kaarina profile image
KaarinaAdministrator in reply to

A member of our family pays for his "off label" prescriptions that are prescribed by a consultant because his GP will not prescribe them on the NHS as they are being used for symptoms that are not acceptable by NICE. He was not told it was anything to do with post code lottery.

in reply to

raffs i have done some research this morning. on Zyban (wellbutrin) for depression in the UK, everything i have read so far it just isnt used for depression here, nothing to to with the postcode lottery. Yes, if you have a doctor who is willing to prescribe off label for depression you would be lucky. Or like you said have psychiatrist prescribe it. As i said, here, its only prescribed for stopping smoking. I have tried to find out WHY its not approved to be used for depression here, but yet havent found that answer, the nearest i found was to do with causing seizures ?

in reply to

Elisse you say it isn't used for depression and then in the next sentence you say it is! The postcode lottery term I used was to try and show how (by the luck of where you live) you can get it from one Dr in one part of a country but not in another and that is the case in my experience of Zyban, (well different parts of the UK to be pedantic).

Kaarina I know of at least two people who were prescribed it by a psychiatrist and were not made pay for it.

Kaarina profile image
KaarinaAdministrator in reply to

Hi raffs,

That is great for the people you know that do not pay for their off label" scripts when prescribed by a psychiatrist. :)

in reply to Kaarina

It is but not very fair for others in other areas, I'm a big believer in free health care for all no matter what - I mean the Governments make money off their people (Taxes, etc) so they should be keeping them well it is only fair and sensible.

Might be worth your family trying a different Dr to see if they area more willing to prescribe, (although a consultant should be doing that).

I know I've been prescribed one 'off label' med and not had to pay but was prescribed another and had to pay - although that was a private Dr.

IIRC lyrica when first used for RLS was off label. In fact are opioids not used off label for RLS?

Kaarina profile image
KaarinaAdministrator in reply to

Elisse, thank you for pointing that out regarding the Wellbutrin. :)

in reply to Kaarina

Yeah it can be prescribed in the UK according to the poster here:

beatingthebeast.com/forum/?...

I am also aware of people in the north of Ireland being prescribed it.

Grammieof4 profile image
Grammieof4 in reply to Kaarina

The Hopkins RLS expert I saw on Tuesday said Trazadone Orr Wellbutrin.

Can I suggest Yoga, Mindfulness, Meditation, good diet and as much sex as you can get your hands on as adjuncts/replacements to the anti-depressants. Also distraction - find something you like doing, (I'd suggest sex but my Mrs wouldn't :) ) and try and enjoy doing it.

I don't want to start a scene but much of the research into anti-depressants was carried out by the companies that created them and are not very effective, (yes many do get help but many are made worse by them). They are used to mask symptoms and do not address the underlying condition - akin to giving you painkillers for a broken leg but not setting it.

I have suffered with low mood over the years, chronic pain and exhaustion will do that to a person but after loosing my career of 20+ years to ME along with hobbies, sense of freedom and ability to care adequately for myself I became depressed last year and it was terrible.

I had been prescribed antidepressants and despite knowing they'd be little use to me thought I'd try them, (also keep the Dr quiet), they all - including Trazadone - made the RLS 1000 times worse. Anyway long story short got me head in gear and am managing to keep the dark clouds at bay.

The suggestions I made at the beginning all helped and can work very very well for depression, (mindfulness if being used by NHS with CBT as Mindfulness based CBT to help with a whole host of problems). CBT is useful too but only in the short term, (I believe this is becuase people do not keep doing what they are taught when the CBT ends). Talking is about the best thing you can do with depression as long as its talking to some one therapeutically - talking about how bad you are without doing anything makes it worse. If you need some one to talk to please feel free to PM me.

I hope you get some relief soon, take care and stay safe.

nightdancer profile image
nightdancer in reply to

Raffs, it is RARE that Trazadone would make RLS worse, so you are an exception to the rule. All kinds of meditation is helpful, mindfulness of how we are acting, talk therapy, etc. But, to get back t the original question for the original poster, NORMALLY Trazadone is fine, Wellbutrin and also Mirtazapine. I had 4 years of talk therapy, have been on MIrtazapine for 4 years, and no more panic attacks, and yes, I work on it every day. But, to simply answer the question, I did it above. Sorry you had such a bad time, BUT, that is not the norm, Trazadone helps promote sleep. We do not know why "restless1973" asked this question, why they want to know what the safe anti-d's are, etc. So, yes, all the things mention can help many people, but without the Mirtazapine and dealing with my PTSD, I would still be in that dark hole. So, let's not assume we even know why the original question was asked.

in reply to nightdancer

True, my apologies on that.

connie50 profile image
connie50

the ones I usually take are called Trazadone they make you very drowsy

nightdancer profile image
nightdancer in reply to connie50

Connie, they are supposed to make you drowsy, hence why it is taken at BED time. :)

connie50 profile image
connie50 in reply to nightdancer

yes I no, I only take 1x50mg at night to help me sleep, my GP prescribed it to me, because I was having difficultly in sleeping, in stead of the zopaclone,(sleeping pills) 7.5 was to strong & the3.5 wasn't strong enough, I asked him if there was anything in between but he said no, that's why I take trazadone helps me to sleep well its supposed to some nights its a nightmare. I took 2 the other night I couldn't sleep for my legs going ten to dozen.

nightdancer profile image
nightdancer

May I ask if your doctor has mentioned this, or is this just asking for information. restless1973? have you been told you need an antidepressant? Also, it would help, from looking at replies down below, if you would stat what country you are in, since things are different in lots of countries. In the USA, Wellbutrin is used as an antidepressant commonly. It and trazadone and Mirtazapine (Remeron) are the ones considered safe for RLS. There are no actual antidepressants used to treat RLS, per se. It is the SSRI's and the tricyclics that are the ones to avoid. You can find the list of Drugs to avoid on the RLS-UK web site, also on rlshelp.org and the US RLS Foundation web site, all have this information and easy to find. It is a list that we all need to learn, take notes, advocate for yourself, and know your "stuff" before you go to the doctor's, and so on. We do not want to find out by trial and error which ones will set off RLS. Keeping in mind there are always exceptions, the SSRI's and tricyclics are the antidepressants to avoid for us RLSer's.

restless1973 profile image
restless1973 in reply to nightdancer

Hi there. I have been troubled with depression since 2012 when I were almost killed in a work accident. Of course I find the stresses of RLS makes things so much worse. But without the help of a anti d I were a troubled wreck. I live in a fantastic place called Kingston upon Hull, England.

I do try to remember things or write things prior to seeing a health proffesional, but my memory is very poor and I forget.

nightdancer profile image
nightdancer in reply to restless1973

Ok, thank for answering that question. Yes. RLS, when it is severe, can exacerbate the anxiety/depression. Even though it is a physical disease, all the sleep deprivation can lead to some depression, so it is all connected one way or the other. I have a notebook I use only for doctor's visits, and notes I want with me for appointments. My "life" is in there, and it is very helpful. :) Sleep deprivation can make us feel like we are losing our minds, and forgetting things is something that is extremely common on this forum, and others for other sleep disorders, so don't feel alone in that respect. For clinical depression, IF you are clinically depressed, then I would suggest bringing up Mirtazapine to your doctor if you feel you need something. It helped me a lot, and also talk therapy helped a LOT. :)

Sandy9356 profile image
Sandy9356

I am on mirapex and trasadone. I take mirapex 3X/day and have breakthrough symptoms all the time. I just taked to my neurologist who stated that I was in the top 1% for the worst symptoms and difficulty with medicine. We are trying the relaxis. It has just been ordered. The customer service as relaxis is above and beyond. They call you the day you recieve you pad and also 2 to 3 times/week for the first month. Supposedly, 90% of the people can eliminate their medicine. I am not sure I am in that category. I am so very hopeful that something can at least reduce my symptoms. I am almost home bound because I can go nothing that requires sitting for more than 10 minutes. The only plus side is that I have a very clean house!!

Sandy, if you are having break through symptoms all the time from taking the Mirapex, i am wondering what dose you are taking. It sounds like you are suffering with augmentation. If so, then the relaxis pad will not help until you address the augmentation.

Pippins2 profile image
Pippins2

I tried 4 GPs and a Neurologist to get Wellbutrin (Zyban) but no luck just kept telling me it was pulled during clinical trials.It was at a time i was wanting off Paroxetine(Paxil).Such variations as n the.States it is prescribed on a very regular basis.Interesting that Quinine has now been banned over the pond yet in the UK it is given out like smarties for cramp.x

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