As I continue to read posts to try to understand what might be triggering my RLS and what I can do to alleviate it, I have just read about D receptors being damaged. I was prescribed ropinerole about eight or so months ago. Have been tapering down for at least three months, I think. Am now on .25 mg and will decrease it to less than that for a couple of weeks or else just stop it altogether.
Question: is it likely that my dopamine receptors are damaged from the months on ropinerole?
Another question: should I start taking berberine to help get them back to normal?
Third question: regarding iron, I’m taking heme iron capsules every other night. Should I take a different type of iron (iron bisglycinate?) at night for immediate help with symptoms?
Thank you to anyone who answers.
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Abby2525
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No your receptors won't be damaged - it is after many years of taking a dopamine agonist that that might happen. Heme iron is fine as long as it is at least 65 mg of elemental iron. The advantage of heme iron is it can be taken with food.
Sue, some people say that they can take iron at night for almost immediate relief. Should I take my iron every night for that reason? I thought I needed to take iron every other night for better absorption.
Abby, I don't think your receptors will be damaged after such a short time, but do get totally off of it asap. This is great news for you and I so wish I had known all that I know now.
Perhaps try the iron bisglycinate version if you have stomach issue from the other iron. There are people who get nightly relief from iron alone, but you might not know for sure until you are totally off of the ROP and through withdrawal.
I am taking Toniq brand berberine as an experiement-I am on my second jar and did not take the first jar as consistently as I should have. I may or may not be the worst person to try to see if the receptors can be repaired, since I was on ROP and PRAM for many years and I didn't think it was a problem. SHUDDER-I would often take NyQuil for sleep, which ramped up my rls, and I just popped some DA drug at the same time, thinking all was fine.
One reason I am resisting the opioids again is that once I fully go back on one, I will never know if a natural solution could have worked. Of course, Dr. B thinks nothing natural will help me. Sadly...oh so sad about that. You are not in the same boat so I do hope the iron or other measures will do the trick!
Hi, TeddiJ, and thank you for your reply. Should I go from.25mg to none or should I step down in another smalller amount first? Also, what will it be like when I stop it altogether?
Hi, there. So, you are now taking 1/2 of a .5 ROP...right? Try using a pill cutter and doing 1/2 of that for a few days to a week-see how that goes. You will most likely need your kratom during this time, unless you have a prescription opioid to help you. Also-you can do a search on here about tapering down. Many people do it very, very slowly-much more slowly than I did. But, you haven't been on it all that long. I had an opioid and I tapered down really quickly with no issues. Within one month I went down to zero DA use-the opioid made it so easy.
From there, you really just need to see how you are doing after what they call the "10 day washout period." The opioid or kratom will get you through. THEN is the real test-will iron and other natural methods do the trick? I had thought for SURE I could go back to natural solutions, perhaps get another iron infusion, etc. They would not give me another iron infusion and I have been limping along trying various options.
If you still need drugs after being totally off the ROP, then gabapentin, Horizant, or dipyridamole might be good solutions. They don't work if your receptors are too damaged, but I doubt that with you. Please do a search and use your best judgement. I don't want to steer you wrong but just giving you my experience! Let me know what you decide!
Hi, TeddiJ, and thank you! Last night was the second night I went without the ropinerole! First night, when the RLS began, I took a lot of hemp products that contain THC. That helped for relaxation and sleepiness but didn’t stop the compulsion to move. At that point, I took 1 tsp. of kratom powder, it worked almost instantly, and I had a great night of sleep. Last night, I only took the tsp. of kratom and not the hemp products. It worked and I slept but not as long as with the hemp products. This morning, about 5:30, I had to get up because there was the compulsion to move. So I guess this is not going to be an easy 10 days, as I suspected and as I have been told by others on here.
Great! Yes, I sleep better when taking the Delta 8 along with the kratom. I have to take kratom several times overnight, too. How exciting for you to be fully off of the ROP!
Thanks! Tonight is going to be the fourth night without taking it. I hope the RLS will settle down some after the withdrawal period is over! I have been taking the hemp-based thc and one teaspoon of kratom. I feel pretty out of it during the day. One night I took the kratom and not the hemp and didn’t feel loopy the next day.
I don’t know if it’s the combination of the two or just the hemp that’s doing it.
Yeah, you just have to experiment and go with what gets you the most sleep with still productive days.
Symptoms are supposed to be the worst during this time frame but since I had methadone, I didn't notice it. I thought my troubles would be over once I got through it, but, sadly, I continued to have bad rls without any meds. That was a huge and terrible surprise for me. Some people have said on here that it can take months to a year for things to really settle down. But it gets complicated when you are taking something that gives you rls upon withdrawal.
Congrats to you! I know it feels so good to be off of the DA's-a real accomplishment!
Hi, TeddiJ. I’m feeling more RLS symptoms which I suppose is due to the withdrawal from ropinerole. Last night was the 5th night without taking the ropinerole and I had to take the kratom twice - a 1/4 tsp earlier and a heaping 1/4 tsp around 9 or so. Then I woke up around 3:45 with the RLS in my left leg. I thought I was going to have to get up but by changing position in bed a few times and stretching my calves for quite a while, I went back to sleep. That was such a good feeling! But I feel like I have the flu during the day - achy, tired, and generally unwell. Do you think that is part of the withdrawal?
Amazing you could go back to sleep! I don't know about your other symptoms as I didn't really have any when using an opioid to withdraw-other than the opioid side effects. Do a search on here and you will find lots of responses about ROP withdrawal. Or, maybe you DO have the flu?
I have done a search on here but the only withdrawal effects I saw here were increased restlessness. I’m thinking it’s possible there are more but I think that’s the main one that bothers people the most.
I know! I didn’t think I’d be able to go back to sleep! But I did!
I and many others believe that rls is mot often an inflammation issue. This inflammarion is most often caused by the food that we eat and the usual culprit is mostly sugar and other refined carbohydrates and also industrially refined seed oils although in rare cases it could be industrial chemicals or even viruses.I have completely eliminates my rls by adopting a strict no processed foodd diet and that includes bread and fruit juices. The RLS only retufned this week after I had a minor stroke last wek and it caused minor inflammation in the left haf of my body. I'm making a fast recovery mainly I belive to the low level of inflammation I had prior to the stroke and that I regularly supplement my iodine and selenium levels (two elements which are essential for maintainance of myelin for the nerves)
Iron levels are depleted by inflammation which is why many people see no benefit from raising their iron levels artificially
Thank you, Eryl. What supplements do you use (names, brands), if you don’t mind saying? Also, I’m doing the best I can to eliminate a lot of foods but I read conflicting information on the Internet. Can you suggest any specific site or sites? Thank you, again!
For iodine I like to use a little nori in casseroles which I make it the slow cooker once a week (I get it from my nearest Chinese supermarket and if I can'make a casserole I take sea kelp which I get from my nearest Holland&Barret. For selenium I just eat a few brasil nutss every now and then.The ammount you need is very small but is essential. While I'm in hospital I'm taking Centrun multivitamin.
welcome to the group Abby2525! I’m so glad that you discovered the horrible side effects of dopamine agonists so early. It is highly unlikely that you have damage to you receptors. In order for permanent damage to occur, you would need to take a DA for years and in larger doses. The only thing I would suggest is to go slow with your reduction. Listen to your body. It will let you know when it’s time to reduce again. Good luck to you.
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