Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Rustsmith
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Re: Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Postby Rustsmith » Fri Jun 30, 2017 2:19 am

reliefis#1, welcome to the group. What your doctor told you is technically correct. Ropinirole is not addicting. However, if you read through the forum on augmentation and many of the discussion threads about getting off of dopamine agonists, like ropinirole, you will realize that getting off of it can be almost as difficult as clonzepam.

But, as Holland said, we really need to know more about your symptoms and the side effects that you are experiencing to know what to suggest. There are alternative medications to the dopamine agonists, but they do not work for everyone. Whether you can live with your RLS without medication also depends upon the severity of your symptoms. Finally, has your doctor checked your ferritin level? Many doctors do not realize that you need to have higher than normal ferritin if you are going to take a dopamine agonist. Also, some RLS patients with very low ferritin can see significant improvement just by boosting their iron levels. However, you need to have it checked before taking iron supplements since there can be issues if your iron levels get too high.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

legsbestill
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Re: Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Postby legsbestill » Sat Jul 01, 2017 4:06 pm

First of all well done for getting off clonazepam - I understand that can be very hard to do. Are you sure your side effects are not due to continuing withdrawals from clonazepam?

You should definitely get your iron levels (serum ferritin) checked as Steve suggests if you have not already done so. Sadly, many if not most doctors have only a limited understanding of the condition and the treatments (indeed the true cause continues to elude even experts in the field). Whether you could manage the condition without medication will depend a lot on how severe yours is. You could also check whether you may be inadvertently exacerbating your symptoms by taking medication or foods which might worsen RLS. Many people do manage without medication. There are a lot of dietary changes that are thought to help - eg anti-inflammatory diets, the fodmap diet, the low oxalate diet, ketogenic diet, plant based diets, low sulphur diet and many more. Many of the diets seem to contain the common theme of reduced or eliminated sugar, dairy, and some or all grains and simple carbohydrates. Also many supplements, most particularly oral iron but also magnesium, vit D, vit B3, 6 and/or 12 and various others are thought to be helpful by some. There is also the issue of lifestyle - taking enough but not too much exercise, stretching, hot baths, cold baths, saunas etc.

As Steve says, Ropinerole is not addictive in the commonly understood sense but coming off it can be pure torture if you have augmented on it (and almost everyone augments in the end although it can take a few years before augmentation sets in). If you decide to persist with ropinerole be careful to keep the dose as low as possible and if you find that the dose no longer helps with your symptoms, think about reducing the ropinerole rather than increasing it (many doctors will suggest increasing it but this will lead more quickly to augmentation). You can supplement ropinerole with other medications for example pregabalin or opioids if required. It would be more common to start ropinerole at the lower dose of .25 - maybe it would be worth reducing to this dose at this early stage to see if that reduces the unpleasant side effects you are experiencing.

reliefis#1
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Re: Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Postby reliefis#1 » Tue Aug 01, 2017 1:15 am

Symptoms in my legs are coming on earlier in the evening. I only have the sensations in my legs. I was on the 2nd week of taking .25 mg when the symptoms returned. I had an urge to move my legs even when sitting. I increased the dose of ropinirole by .125 mg. That seemed to help. But, giving the side effects I am having, I am afraid to increase it more, Have hot flahes, strong anxiety, headaches to the point that even my teeth hurt. What has mostly concerned me is the very strong heart palpitations. I have extra ventricular techicardiac. Which is extra heart beats. This condition is controlled through medications. However, since I started on ropinirole, the heart beats have been stronger. I know that taking someone alses medicine is wrong, but my sister was prescribed 300 mg of gabapentin for back spasms and I asked for a few to try. They work better for me. I am on the 2nd night. So far, no withdrawal from ropinirole. The extra palpitations have calmed down. My only problem now is the dizziness and constipation. Has anyone tried gabapentin and how long did these side effects last. I have chronic constipation and don't want to make things worse. I want to get off the RLS medications but at the same time I don't want to live through the nightmare of no sleep. I experienced that when withdrawing from clonazepan. Prior to taking all these medications, I don't think my RLS was too strong. I experienced these sensations occasionally. When I mentioned it to my doctor, he immediately prescribed clonazepan. That was a 15 year experience. No problems with RLS during that period of time until the medication lost its effect. No doctor ever told me about the nightmare I put myself through. I learned the hard way. Now I am struggling to find a way of managing this desease and have some quality of life. I thank God for leading me to this site. You all have been more help than any doctor I've been to.

stjohnh
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Re: Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Postby stjohnh » Tue Aug 01, 2017 2:55 pm

reliefis#1 wrote: What has mostly concerned me is the very strong heart palpitations. I have extra ventricular techicardiac. Which is extra heart beats. This condition is controlled through medications. However, since I started on ropinirole, the heart beats have been stronger. I know that taking someone alses medicine is wrong, but my sister was prescribed 300 mg of gabapentin for back spasms and I asked for a few to try. They work better for me. I am on the 2nd night. So far, no withdrawal from ropinirole. The extra palpitations have calmed down. My only problem now is the dizziness and constipation. Has anyone tried gabapentin and how long did these side effects last....


Relief, you should NOT take gabapentin under these circumstances. Gabapentin increases the QT interval, this is an electrical measurement taken on an EKG of the heart. For some people a Long QT interval increases the risk of fatal heart problems. These risks are greater for somebody that has ventricular arrhythmias already. Please do not take any more Gabapentin until you discuss this problem with your doctor.

For the rest of you out there reading this, Gabapentin is mostly very safe. But remember that all medications have side effects and sometimes they are not immediately obvious. Do not borrow prescription medication to try from your friends or relatives without notifying your doctor first.
Blessings,
Holland

badnights
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Re: Cold Turkey off Ropinerole... Day5 of no sleep, how do I know if it's still augmentation

Postby badnights » Tue Aug 01, 2017 6:46 pm

reliefis#1, can you see a doctor sooner than 30 days? Have you stopped the ropinirole completely? or just reduced it? (congratulations either way.)

I have chronic constipation and don't want to make things worse.
You should be able to deal with this by making some dietary changes, unless you have other medical problems. What is your diet like now? How much of a change would it be to eat 6 cups of vegetables a day? (2 cups each of green leafy ones, colorful (red, yellow, orange) ones, and cabbage-mushroom-onion family ones. ) I know that sounds like a lot, but it's totally do-able, and totally helps. It also gives you more of the micronutrients you need.

Also be sure to drink a tall glass of water every hour (especially if you take things like bran or metamucil - otherwise those things will just bung you up worse).

Other things you can try (in addition to the increase in vegetables), although I'm sure you know of all these sorts of tricks and have used them: Take a tablespoon of oil (mixed with lemon juice if you can't stand it) every morning... flax, or olive. Eat a raw beet every few days (can cut it up in a salad). In general, you could try to avoid "food" that has multiple ingredients, especially chemical names, and stick to food that is as unprocessed as possible - "whole foods". And be active, because movement helps bowel movement.

I admit I don't know your situation, but that's what's worked for me. I don't use the oil or raw beet anymore - just if I feel things starting to bung up, which only happens if I'm travelling and unable to eat properly. I take opioids regularly, and without problems, but I still remember the first time I took them - no one warned me - omg the horrors!

But whatever is going on with your heart seems more important, and probably you shouldn't wait to see someone about that.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
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