Mine and dad's update.

[JacquiiCann]

Hello just a quick update. Thank you to all who commented. I am so sorry I didn't get back to you all. It's been..well not great, for my dad at least.

I wrote a few months ago about my poor dad. His doctor halved his Ropinerole over night after I contacted her and sent her the new info on augmentation from the Mayo clinic. My dad tried his very hardest but he was in such a state he was falling asleep standing up, he eventually fell asleep on a chair, fell and hit his head on the radiator which gave his 'drop head'. His life changed from that day, unable to do any of his beloved sports or even drive! He tried to give up his tablets but found it difficult and ended up going back on them. As of today he is still falling asleep standing up his doctor stopped him altogether taking Ropinerole. She stopped his prescription and put him on 1 x 100mg in the morning and 2 x 100mg in the evening. This has been awful for him. He isn't coping at all. With his drop head he has been told he now has sleep apnea and has to wear a mask in bed.... that's OK IF he can go to bed which he cannot. He has tried on many occasions but still unable to actually lay down for more than 30 minutes because of RLS.

I have attached his prescriptions for other meds in the hope that someone can find a solution or figure out why he is suffering so bad. It is so sad seeing my dad this way. He won't go out. He said he feels like he is in God's waiting room waiting to die.

My update on the other hand is very different. My doctor ( I seem to have a new doctor every 3 months!) I have been doing well with my restless leg it seems to be a thing of the past, if I look after myself and not have alcohol, have sugar in the evening, keep hydrated etc..

I have been taking 2 tramadol and 2 Gabapentin twice daily for coming upto 3 years now. No sign of augmentation which I am expecting at some point. I will deal with this when it happens. My problem is that I have osteoarthritis in my knees and hip and feel alot of pain in bed so unable to sleep. On visiting my doctor he has prescribed 10mg Amitriptyline at night BUT he said I have to now come off Gabapentin!! He said that doctors have been told, to stop dishing them out and to reduce patients prescriptions! He told me I have to reduce my tables and in turn he will up the dose of Amitriptyline. I explained that it wasn't an option for me as Amitriptyline will not help with severe restless leg... he didn't seem to care. He shrugged his shoulders and said "I could put you on Pramipexol" 🤬...you can imagine my very quick response..quoting the Mayo clinic! He obviously didn't read any of my file before hand.

Any advice or tips on my dad or myself would be truly grateful 🙏.

[SueJohnson]

You both need new doctors. If that is not possible you can see a neurologist privately who can recommend the correct treatment to your GPs. If you tell me what city you each live in I may be able to give you names of knowledgeable doctors.

If you can't get your Dad's doctor to put him back on ropinirole which is what he needs now he is going to suffer terrible withdrawal and may injure himself again. Someone should be with him at all times. Needless to say the amount of gabapentin he was given won't help much.

You won't augment on tramadol and gabapentin so don't worry about that. Amitriptyline will make RLS worse so I would advise you not to take it. I would refer your doctor to the Nice Guidelines which list both DAs and gabapentin as treatment. Also rls-uk.org/ under treatment which says use gabapentin.

[SueJohnson]

Can your father get kratom or cannabis to help with his withdrawal? He can get co-codamol OTC and take 2 of them every 6 hours to help. It contains a small amount of cocaine.

Most of his medicines make RLS worse.

Lanzoprozole is a proton pump inhibitor and RLS-UK says most proton pump Inhibitors worsen RLS. It is an antacid. A safe substitute is Zofran. Mirtazapine is a tetracyclic antidepressant. A safe substitute is Wellbutrin or trazodone. Candesartan increases potassium so that should be checked.

He is taking a statin and statins make RLS worse. Nexlizet (Nustendi) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) reduces cholesterol although it doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS. And then there are Triglide (Fenofibrate, Fibricor, Lipantil, Lipofen, Supralip) and Bezafibrate (Bezalip) which are not statins which seem safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.

Since he takes gabapentin he should be closely monitored as it can raise the bad LDL and lower the good HDL. Pregabalin does not increase it so he might want to switch.

[Madlegs1]

I am getting so fed up with the ignorance and self-importance displayed by so many doctors, related by patients to this site.

Would it be possible to crowdfund a scheme to retain a legal firm who could write a solicitors letter to each of these miscreant medicos.

I'm sure they are falling foul of some guidelines or practice.

( Ok- I understand the HSE/ NHS / NICE guidelines in the UK are out of date, and they can probably hide behind that factor, but ,honest to God, where is their common humanity?)

I can see a time soon enough where a disgruntled patient ( out of their minds with pain) or a long suffering carer will take matters into their own hands and dispense some extremely rough justice.

For sake of sanity and human consideration, can some medical board not make an order outlining the best practice for RLS control, and sanction any doctor who ignores it.

We are not living in medieval times any more, hopefully???

🍀

[Joolsg]

Please report this doctor to the RCGPs. All those meds your dad is taking trigger/worsen RLS. No excuses for your ignorant GPs to look at NICE cks guidance and RLS-UK. These websites make clear that SSRI, SNRI and tricyclical antidepressants like Amitriptyline and Mirtazadine will WORSEN RLS.Time to confront these doctors. Seriously consider legal action for total breach of CARE/DUTY.

Your dad has to get off Ropinirole SLOWLY. AND Gabapentin should be taken at night only in split 600mg doses 2 hours apart. But gabapentin won't help until 3 weeks after last dose of Ropinirole.

Both of you need to read the RLS-UK website. There is a SAFE withdrawal schedule under Useful Resources.

There is also a page on Iron therapy.

Your doctor is seriously negligent.

If he tries to take you off gabapentin and put you on Amitriptyline he really, really is dangerous. Please write a complaint to RCGPs and the local health authority.

Can you both change GP surgery?

Jaysus- it's getting worse and worse.

Are they actually doctors???? Serious question.

[Madlegs1 in reply to Joolsg]

My Father was a doctor in Africa many years ago.

There were local witchdoctors who would have been better than some of the gobsπ[es we hear about here.

[Joolsg in reply to Madlegs1]

🤣👍

[SueJohnson in reply to Madlegs1]

My laugh for the day! Your never fail to keep me laughing . 👍"There were local witch doctors who would have been better than some of the gobsπ[es we hear about here. "🤣🤣🤣

[Rayme]

your poor Dad, it's heartbreaking, all the RLS suffering. Ive walked all night, for months, years, as have so many of us.I hope he gets the right help ASAP. I'm on methadone and have some breakthroughs because I wish to stay on lowest possible dose. There are options for him ( not perfect but infinitely better) under the right care.

[JustVisiting23 in reply to Rayme]

Hi Rayme: I’m in the same position with Methadone. 15 mg provides satisfactory relief, but definitely not anywhere near complete relief. Like you, I will accept this status so as to avoid increasing the Methadone. I am curious if others are in the same situation?

[Greenleaf360 in reply to JustVisiting23]

I offer two thoughts:1. I take 10mg and added pregabalin. The pregab mopped up the minor rls symptoms

2. It's common to have both primary and secondary rls. The secondary cause needs to be identified and treated. I have both. I journalled every twitch for a year before I realized constipation caused symptoms that mimiced RLS. My doc recommends miralax daily.

[JustVisiting23 in reply to Greenleaf360]

I neglected to mention that I also take Horizant! I appreciate your comments.

[BabyBlue999 in reply to JustVisiting23]

Hi Justvisiting23

I’m on Methadone 10ml x daily. I still have the consistent tingling and agitation 24hrs but has stopped the nasty disabling gripping that causes me to walk or moving around. I’m able to sleep for 5 hrs now more than then 1 hr nightly. I’m able to function with 5hrs. Before methadone I had been without sleep for 9 yrs, suicidal for the last few months previously . My consultant Dr Jose Thomas prescribed Methadone. It took several months to get relief from up to he 10mls x twice daily. I can’t eat sugar of any kind other what’s in veg, chicken, avocado, nuts, seeds, eggs. No potato, bread etc.

My thoughts, prayers and love to all of those who suffer from this horrible disease . X Patricia X

[CarnivoreTony]

Your dad's situation sounds pretty similar to what I went through. Mirapex and Neupro provided partial relief but serious augmentation. Methadone was very effective. Now I live where I can't get Methadone. The carnivore diet completely cured my RLS after a couple of months. I know nightshade vegetables are a big RLS trigger for me, but cutting them out, along with sugar, alcohol, caffeine, and dairy didn't work. Now I only consume meat, butter, yogurt, cheese, and coffee, and I'm RLS free. I know it's not for everyone but I thought I'd share.

[Midnightblues in reply to CarnivoreTony]

Hi Tony, I'm interested to know if you were previously vegetarian? I don't eat meat, but would revert if I thought it might help the RLS. Like many others I'm at my wit's end with the lack of empathy and interest from my GP surgery; in fact we are no longer designated a personal GP and our 'online' queries are handled by ..... well, who knows? The receptionists, the cleaning lady, AI ? My dog has more empathy. Anyway, how fantastic that you've found a solution that works for you, long may it last, and thanks for sharing!

[CarnivoreTony in reply to Midnightblues]

I found that GPs in the US were pretty clueless about RLS. But I also had severe sleep apnea so I was referred to a sleep specialist. He was very knowledgeable.

I wasn't vegetarian, but I ate a mostly plant based Mediterranean diet for many years, that included meat or fish a few times a week. It's certain plant based foods that are the trigger for me. The only ones I'm 100% sure about are nightshades. Tomatoes, peppers, eggplant, potatoes, etc., were a daily presence in my diet, and any time I've tried to reintroduce them my RLS has returned. You might try omitting nightshades first.

[Midnightblues in reply to CarnivoreTony]

That's helpful Tony - I'm wary of raw tomatoes and eggplant but am a huge potato fan so that would be a difficult one to let go, but anything is worth trying if only to get some relief. Anyway it's a good place to start. God bless this wonderful forum and sharing of information. Many thanks.

[CarnivoreTony in reply to Midnightblues]

Good luck! I had some Chinese food last night, being careful to avoid nightshades and my RLS returned. Back to nothing but meat and dairy for me.

[Midnightblues in reply to CarnivoreTony]

Yes me too with Chinese, I think it must be the MSG, but I couldn't manage without dark leafy greens and lemons. We all have to figure it out for ourselves which is pretty much what life teaches us anyway!

[JacquiiCann in reply to CarnivoreTony]

I try remembering to write down all that I eat and drink, to see if anything has an effect. I guess everyone is different. Some people swear, that pasta sets them off... it doesn't with me neither do potato's. I know eating too much in one sitting as does sugar. Peppers have an effect on my osteoarthritis though. Like some people only get restless legs in the evening... I get it in the afternoon and sometimes first thing in the morning. We are all wired differently. Thank you for commenting, very helpful.