Just a Ropinerol update

[Boofoo71]

I'm now on 1.5mg from 6mg and starting to struggle. I had my bloods doneand my ferritin level was pretty low, so my GP has started me on iron. I'm also taking magnesium too. I've found having an electric blanket really helpful. It seems to be relaxing to my nerves. I'm starting to jerk a bit now throughout the day. I've cut a lot out of my diet, so in a positive note, I'm losing weight. No caffeine, herbal tea instead. No cheese or chocolate as they trigger me. Actually I've tried to cut out everything that I enjoy. So I'm getting there. I know I'm yet to go through 'hell on earth' but I'm well on the way. I have got a cannabis contact too (never thought Id ever put that in a sentence!) when it becomes unbearable. Much love to all and I'm so super grateful for all your support and advice 💕💕 I will keep you updated xx

[Joolsg]

Well done for getting this far. Take the iron once a day only as it actually increases ferritin more quickly, or, if you can afford it, get an iron infusion privately.

The Iron Clinic in London.charges around £800. You send them your blood test results.

Iron infusions are available on NHS, but can be difficult in certain areas.

I spoke to Angharad Vaughan at Leigh Day Solicitors last week about Impulse Control Disorder.

She has represented hundreds of RLS and Parkinson's patients successfully against the doctors who prescribed dopamine agonists and failed to warn about the risks of ICD. She also brought the original successful legal actions against the drug manufacturers and won back all the money her clients had lost and damages on top.

Now, the drug companies ALL include express warnings about ICD and Augmentation in the medications packets so we can no longer sue them.

But doctors should warn all patients expressly before prescribing these drugs.

Keep going, and listen to your body.

Cannabis is now legal for RLS in the UK, so you can buy from Sapphire or Lyphe private clinics. Initial consultation is £50 and they would probably suggest cannabis flower to grind and vape in a cooling vape tower. That works instantly. The cannabis oil with THC takes 2 hours to take effect.

Your GP should also consider prescribing a low dose opioid like tramadol, codeine or oxycodone to settle the withdrawals at each drop in dose.

Keep going, you are doing brilliantly.

[SueJohnson]

Congratulations o getting down to 1,5 mg,!

What was your actual ferritin number?

Take two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every day at the same time so it is at least 24 hours apart since when you take it hepcidin is released which prevents iron from being absorbed for up to 24 hours, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If your transferrin saturation is below 20, you may need an iron infusion. If you take magnesium, calcium or zinc even in a multivitamin, take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.

[Boofoo71 in reply to SueJohnson]

Thanks Sue. My ferritin level was 40 which is low apparently. I'll follow your advice re iron. Awful night last night but that has been happening every now and then. Very twitchy and jerky this morning. Been up since 5am. Hopping in the shower for, hopefully, a bit of respite. 😳🤪😳 xx

[Boofoo71]

Will do Desert 🏜 thank you. I'm hoping the iron will help my withdrawal symptoms. Xx

[Boofoo71]

No. I think I just wanted to do one at a time and my GP told me that too. I know the one I'm on is not great and Jools gave a few alternatives. I think my body would implode if I did my SSRI's too. I think walking round and round is bad enough, but crying at the same time maybe too much. I've stopped taking the Nortriptyline (sleeping meds). I have Tramadol which will help when it gets severe xx

[Boofoo71]

I think because I know what full withdrawal feels like, I'm getting a bit in my own head. Now I'm getting the symptoms of withdrawal I'm getting a bit panicky because I know it will get so much worse. Hopefully the extra iron will help xx

[Boofoo71]

Question.... now you've finished your primal scream 😱 😊 can I just change my SSRI to a better one? I had a severe head injury after the incident, which affects my balance and spacial awareness, CPTSD and sometimes speech. Sertraline seemed to be the only SSRI that helped put me on somewhat of an even keel (and no longer wearing high heels, and speech therapy). My thought process was to try and stop my ICD. Then try a new SSRI, I apologise if I've misunderstood. It's hard for me moving forward, when I've lost confidence in my neurologist. There's a very fine line between my RLS and CPTSD.

[SueJohnson in reply to Boofoo71]

Don't try a new SSRI for gosh sakes. You will have the same effects on your RLS. Trazodone as DesertOasis said.

[Boofoo71 in reply to SueJohnson]

Hi Sue, I wasn't going to change anytime soon. My Tramadol is helping. I'm trying to understand everybodies advice, and there's been a lot. I've probably misinterpreted some of it along the way, in regards to what to reduce first. The forum blew up when I first posted regarding Ropinerol and then the patches, so I was panicked to say the least. So I'm now on 1.5mg of Ropinerol, with a substantial change in diet. I've always walked so exercise is not an issue, although sometimes after a long walk my rls can be worse. So I'll now stay on 1.5mg and start to reduce my Sertraline slowly. So once I'm off Sertraline where do I go from there?

[SueJohnson in reply to Boofoo71]

Trazodone as DesertOasis suggested.

[Boofoo71]

Trazadone.... thank you. I'll speak to my GP

[Boofoo71]

I appreciate the info thank you. I have insomnia and mad dreams, so hopefully that will be a good substitute for Nortriptyline. Not sure whats worse, a crazy body or a crazy mind!!

[Baldrick123]

I got put on something called "Forceval" - a supplement containing iron and other "good nutrition" ingredients. My blood iron/feretin has gone up a bit after taking it for three months but I am doing another three month course to get it higher. I am taking it with a bit of fresh orange juice as vitamin C helps with iron absorption.

[SueJohnson in reply to Baldrick123]

Forceval is fine but you need much more iron. It only contains 12 mg of iron. You need 65 mg. Add 55 mg of ferrous bisglycinate or as close to it as you can. Won't hurt to go over. Since the forceval contains minerals like calcium, magnesium and zinc that compete with the iron for absorption, take it at least 2 hours apart. And yes take 100 mg of vitamin C or some orange juice with the iron. Take it preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout, don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

[SueJohnson]

Since I advised you on taking iron every day I did more research and discovered I was wrong. One absorbs more iron in alternate day iron than taking it every day. Https://thelancet.com/journals/lanh...

[Boofoo71 in reply to SueJohnson]

Ok great ... I shall start to do that. Thank you for the update Sue 💕