Still Looking for Suggestions

[DogsCatsFamily]

So my post kind of got highjacked into multiple directions. LOL! So I started and new one.

My concern is still how to withdrawl from Ropinarole without losing my mind during the DAY. I have something for nighttime but the US is so paranoid from the abuse of opioids that only a miracle would help me find and get an appointment in the next 6 months with a doctor that would prescribe them. I researched Kratom but saw a lot of people who also had issues with that and it was quite addictive. I get paranoid with I smoke pot, haven't tried edibles but I do live in a state that sells them if you can get a medical marijuana card, but they don't give them for RLS. I'm encouraged to hear that for some as they reduced the Ropinirole the daytime became less. Just to review my doctor handed me the Pregabalin and a sleeping pill and said not to take the Pregabalin until I am completely off of the Ropinirole. I asked her with tears in my eyes how I could do that when I have to stand, walk-in-place, or pace around my house for hours inbetween doses? She said, that I had to get off the Ropinirole before I could take anything else, period. It takes months to get an appointment with my doctor to try and get the test for my Ferritin levels. I requested an iron level blood test last October at my annual physical and they didn't include it. I appreciate all the suggestions for testing but where I am in Colorado things move pretty slow and the insurance is resistant to almost everything. I mentioned the iron infusion and was told it was too dangerous! So this is what I'm facing. I appreciate the referrals to a doctors in Denver but that's not really possible for me to get there, I need a doctor in Colorado Springs, Colorado covered by my Insurance and Medicare. So that's just about covers it.

[SueJohnson]

Dr Marc Wasserman in Litttleton accepts Medicare and is located only an hour away. He does telehealth appointments. He might want to see you in person the first time.

[DogsCatsFamily in reply to SueJohnson]

He isn't covered under my Medicare Insurance

[SueJohnson in reply to DogsCatsFamily]

I guess you have Medicare Advantage then. That is the disadvantage of those plans.

[DogsCatsFamily in reply to SueJohnson]

Yes unfortunately I do have the Advantage Plan

[Jumpey]

I'm sorry you are suffering. You could email Dr.Buchfuhrer for advice because low dose opioids should help.And show your doctor his expert opinion. Good luck.

[Munroist Administrator]

As many people have said, coming off Ropinirole probably won't be easy and there aren't any magic bullets. If you are experiencing RLS during the day then that is highly likely to be augmentation caused by the Ropinirole, and as you reduce your dose the augmentation and daytime symptoms should also reduce. Additionally augmentation often causes RLS to spread to other limbs e.g. upper body and arms and that should also reduce as you reduce your dosage. Reducing slowly in very small increments as outlined by Sue should help to minimise the effects of dopamine agonist withdrawal, but there's a possible downside that the process will take longer. However only a few people seem able to go cold turkey without feeling pretty uncomfortable. You could try taking pregabalin before you are completely off Ropinirole but that's against your Doctor's advice and most people say it won't be effective until you've stopped the Ropinirole, possibly because it's having to fight the effects or Ropinirole as well as your original underlying RLS.

The rest below is probably stuff you already know so I was in two minds about including it as it I don't think it's what you are looking for but I think it's relevant

It's worth doing everything you can to find someone to prescribe buprenorphine although I completely understand this isn't easy and the medical profession can be frustratingly inconsistent and unhelpful. There are other opiods which some people find helpful such as codeine, cocodamol, oxycodone, tramadol but none are as good as buprenorphine, but your doctor may feel better with some of these?

Other than that then there are many small things which help people which you can try to do all together to give you the best chance of getting some sleep such as diet (avoiding triggers if you know what yours are .. sugar, alcohol, caffeine, carbs?), moderate exercise, standard sleep hygiene avoiding blue light, going to bed on time, cool dark bedroom etc. Individually these are unlikely to make a significant difference but together they may give some relief.

I know this isn't the answer you are looking for, but the only thing I can add is that we have a lot of people on the forum who have come off dopamine agonists successfully, albeit with some discomfort, and are very glad they have done so. If you are suffering with augmentation then staying on a dopamine agonist is not going to get any better.

[DogsCatsFamily in reply to Munroist]

I so appreciate the information you shared. Yes I got the other information from Sue Johnson which is great and I am totally fine hearing it more than once.

[Joolsg]

I'm so sorry your doctors and insurance company are not listening. Iron infusions now are very safe. But doctors who qualified before the 90s were taught they were dangerous.I know you're wary about kratom, but you're in a difficult position.

Reducing Ropinirole is very difficult without a med to help settle withdrawals.

As you reduce down to 0.25mg, the RLS does increase.

You will need 2 weeks vacation for when you drop the last dose. The RLS is unbearable for4 or5 days, with zero sleep or rest and, in my case, a lot of falls through exhaustion.

Kratom was very helpful for me during withdrawal and I only used it sparingly for 2 weeks.

It was legal then in the UK. But now it's illegal.

A teaspoon gave me relief for about an hour or two.

Cannabis also helped and knocked me out for an hour.

Definitely join rls.org and access all their help information.

Show it to your doctors.

[DogsCatsFamily in reply to Joolsg]

I really appreciate your reply. I have decided that Kratom is probably my only option. I have no idea how much to take or if it comes in different forms. Here in the US I can purchase in the state I live in but they are not allowed to give advice on how to or how much to take, so where do I find that information? The advice on taking some time off during the last dose is exactly what I needed to know so I could plan ahead. Thank you so much!

[Joolsg in reply to DogsCatsFamily]

I used red vein borneo kratom and dissolved one teaspoon in about an inch of warm/hot water and then added orange juice. It tastes foul.I would never use more than 2 teaspoons a day because I was so concerned about developing addiction or tolerance.

I nearly gave up the withdrawal several times. It was so difficult.

But I knew my RLS would keep getting more and more severe if I stayed on Ropinirole. That kept me going.

After 5 days off Ropinirole, I started to get a little sleep. First 30 mins, then an hour, then two.

After 3 weeks, the daytime RLS had gone.

Definitely push for iron infusions.

I know at least 3 people personally who are med free after an iron infusion.

Sadly, it didn't help me.

But now, I'm 0/40 on the RLS severity scale. It took me 5 years to access the right medication.

I take 0.4mg Buprenorphine at night.

Dr Berkowski operates out of Ohio and he has recently written a post about Buprenorphine for RLS.

I hope you manage to find a doctor near you that your insurance will cover.

Can you call them to explain you need an doctor who actually knows the basics? There aren't many. RLS isn't taught at med school or during training.

It is a worldwide medical scandal.

[DogsCatsFamily in reply to Joolsg]

I started lowering my Ropinirole by 1/4 this past Saturday and so far so good. Thankfully the online doctor whom I have to pay out-of-pocket for prescribed me some Gabapentin to help me as I lower my doses. So other than worse RLS and lack of sleep, what else should I be aware of as I lower the Ropinarole. People just say withdrawls but nothing specific.

[Joolsg in reply to DogsCatsFamily]

The overwhelming majority have very severe withdrawal. When you drop the last dose, you get no sleep or rest for 3 or 4 days. The RLS becomes extremely severe and your legs jerk very violently.With each day, you start to get an hour or more rest. Falls through exhaustion are common.

However, there are a lucky few who don't get severe withdrawals, and you may be one of them.

No matter how bad it gets, don't give in. Throw away any remaining dopamine agonists so you cannot be tempted to restart.

About 4 weeks after the last dose of Ropinirole, your RLS should settle, you get 4 or 5 hours sleep and your afternoons improve.

Then the replacement med should start to cover your symptoms.

[Jumpey]

somno.verizon.net

[DogsCatsFamily]

I started lowering my Ropinirole by 1/4 this past Saturday and so far so good. Thankfully the online doctor whom I have to pay out-of-pocket for prescribed me some Gabapentin to help me as I lower my doses. So other than worse RLS and lack of sleep, what else should I be aware of as I lower the Ropinarole. People just say withdrawls but nothing specific.