scared and worried

[6236]

I will have to admit that I am very concerned about coming off the Ropinirole! After reading some of the experiences that some people have had it makes me wonder what will I go through. I know I’ve said this before but I’m just not sure I can do it. If I had some good support and help it would make it so much better but only my daughter seems to understand how this affects me. I am in a very bad place right now anyway due to other circumstances in my life and my depression and anxiety is a lot worse. Please say a prayer I see a new doctor in a few hours about the RLS and I hope he knows how to help me if not I go to Vanderbilt in April. I am going to order some red vein Kratom hopefully that will help. Thanks again for all the help.

[SueJohnson]

Buck up. You can do it. It won't be any worse than what you are going through now and look forward to the day when this nightmare is over. Using a jewelry scale if needed can make it relatively easy and if your new doctor will give you an opioid to help that will also make it easier still. It's not a nightmare. You are scaring yourself needlessly. We are all here to give you support.

Ask for buspar for anxiety and trazodone for depression.

[6236 in reply to SueJohnson]

Thank you Sue ! I have ordered some red vein Kratom. I will see how that does. I am 63 years old and I have been through a lot but this worries me. But as you say buck up! Or in American slang suck it up!

[SueJohnson in reply to 6236]

There is light at the end of the tunnel. 💡

[6236 in reply to SueJohnson]

Well Sue I found a doctor that listens! His name is Kendall Nichols and he worked with Dr Dye. I was so happy and relieved to finally find someone! He spent over an hour with me asking questions and explaining everything. The thing he wants are my records from the other doctors I have seen and he was not happy with my ferretin levels so he wants to bring them up over 100 as quick as possible so we are checking to see if insurance will cover an infusion . He also wants to do a sleep study to be sure there is no sleep apnea because of my terrible snoring. But before anything he wants to do a full iron panel. He told me that coming of Ropinirole was not going to be quick or easy but he would prescribe an opioid to help me get through it. Thank you and everyone for your help and encouragement! I will keep you posted as this progresses.

[SueJohnson in reply to 6236]

That is Terrific !!! So pleased for you.

[Coeso in reply to 6236]

So pleased for you. I'm sure the opioid will help a lot. Good luck

[Purpleyam in reply to 6236]

Good luck! That's wonderful you found the right doctor! You'll be fine.

[Cobobay in reply to SueJohnson]

Yes there certainly I'd, I'm 3 months off now and so glad I persevered, so if I can do it, you can honestly, rooting for you, every day is a step towards being free from this awful drug x

[RiversW in reply to 6236]

SueJohnson is right. It may be difficult, but so is what you are enduring and whats more, once you have the Ropinirole out of you system you will be in a better place. You can do it! Buprenorphine is helping me make this transition. Good luck!

[ChrisColumbus]

I hope that it goes well!

[Joolsg]

I have MS as well as RLS and was dreading the withdrawal, as my balance isn't good, and I knew I'd fall over a lot. It was awful, but I managed it with help from my husband. Ask friends and family to stay over for the 4 nights after the last dose of Ropinirole. That's when it's really bad.However, I didn't have access to methadone or Buprenorphine back then.

People who start methadone or Buprenorphine as they're reducing dopamine agonists do not seem to get the horrendous withdrawal symptoms.

Hopefully, your new doctor will prescribe them and an iron infusion if necessary.

Stay strong.

Once off that poison, you will get your life back.

[Lineker in reply to Joolsg]

Can I just say how comforting I found it to read your post. Thank you so much.

[Joolsg in reply to Lineker]

xx

[Boofoo71]

You can do this, honestly. Unless someone has been through withdrawal from Ropinerol its pretty hard to understand your fear. Ive just done it after over 15 years and severe augmentation. I appreciate you anxiety and apprehension. I was a lot more prepared this time after putting it off forever. I have PTSD also and even though everybodies information is helpful, we are also individuals and we will react differently. My personal goal was just to get off Ropinerol. I dropped down about 1mg over each week. I was on 4mg sometimes 6mg! The first 3 mg weren't too bad however I changed a lot of my diet, less sugar, less fat and less dairy and was prescribe a high dose of iron as I was low. Sorted out my sleep hygiene, nothing to eat after 8pm, warm shower, an electric blanket (on low), lavender spray and I also listened to music or an audio book. No phone distraction. I told my family I was withdrawing so just to ignore my need to be grumpy and tired. The preparation certainly helped me. My last 1mg was a bit tougher and about 4 days after, albeit not as bad as I thought. Believe it or not I'm still on ZERO RLS meds. Just my iron, sage, red clover, sertraline 100mg and 2 x tramadol at night before bed. I think the tramadol certainly takes the edge off. A more organic approach certainly got me through it and preparation. I feel its not just a medication change we need, its our triggers also, food, alcohol etc. I wish you all the luck in the world, I have zero medical knowledge and this is just my own personal journey. You can do this. I feel amazing. I will certainly pray for you. If you have an alexa, put it by your bed as I also play biblical meditation, and sleep hypnosis. Help your mind as well as your body. God bless you on your next journey to freedom from this awful drug! 💕

[DogsCatsFamily in reply to Boofoo71]

Thank you for sharing this as I am trying to get my courage up to get off Ropinirole as well and I get the "buck up" and all but I am scared and don't have a husband as support, in fact I'm recently separated. Anyway your post encouraged me. Thank you.

[Boofoo71 in reply to DogsCatsFamily]

Me neither. Recently seperated too. Do it for you. You are strong enough to get through this and live your best life! There is a better life out there, find your strength, do it, and live it 💕

[DogsCatsFamily in reply to Boofoo71]

Thank you so much. 🥲

[JakeRLS in reply to DogsCatsFamily]

I would encourage you to take a hard look at your diet. I changed mine because of a different Health scare and like Boo Foo gave up Dairy cut way back on my sugar and fats, also ate more fish than beef or chicken. The unexpected consequence was my RLS improved significantly. That was about a year ago and I am still benefiting. Good luck to you. This is such a great group for support and education. I think that's more than half the battle.

[Strike26]

hi - usual story with RLS, the meds affect everyone so differently. With the advice on here, I moved to Gabapentin and stopped Ropinirole- had no withdrawal symptoms at all. And the difference- 80% (my estimate) reduction in RLS. All those years and finally some relief.

I think your other point about non sufferers not understanding the degree of disruption/pain that RLS causes is well made. Even when I explain it in detail to family or friends it doesn’t register with most of them. I do wonder if we should rename it as restless legs sounds kind of mild, cosy, almost amusing- as we know it’s anything but.

Anyway, best of luck and go for it.

[Nightwalker999]

Hi sweetheart I know how awful RLS is, I've had this dreadful disease for years, I was px Tramadol & Amitriptyline for 25yrs. I didn't know I had it when my Dr took it off my px, saying it can cause brain damage. A day later I had RLS 2pm - 3.40am. I could only slept for 2hrs. After 2 years and a minor stroke I was Px Ropinerol a miracle then I learnt this would be problems as it needed to be increased often. It took 24 months to get off it. I was Px for all meds available but no help until I was suicidal, walking or tapping my legs. I tried ,krakom but caused sickness and sleepy but not reduced RLS. My doctor sent my to Dr Jose Thomas. He is amazing, understanding take time to listen and empathetic, he px Methadone 10 months ago. I had to increase to 10mls x daily the max. I continue to get the tingling and agitation 24hrs but the cramping is reduced. I'm thinking of all of you and praying for a solution,

Don't give up we're all with you , please reach out to us when you're troubled. This RLS site and the amazing people here. Jools, Sue and Chris help us all. God bless all of us. XX

[6236 in reply to Nightwalker999]

Thank you and since seeing my new doctor who is amazing I know with his help I will be able to do this. I am so blessed to have the support from people like you and the others!

[HipHop1972]

Oh my dear 6236. I was sad to read your post and your worries about coming off Ropinirole. I am sorry if some of my posts have added to your fears. I should start by saying that unlike you I wasn’t suffering from depression so that helped me get through withdrawal, also I was on a high dose 6 mg / night so that’s why it took me 13 months but trust me when I say it was worth it. You have to reduce very slowly no more than 0.25 mg every 2 weeks or so until it settles and then the next 0.25 mg. I would be deceiving you if I said it was easy, it isn’t but it does get easier the less Ropinirole you are taking. I have been Ropinirole free since 23 October 2023 and feel so much better for it. Be careful what medication you are taking if any for depression as they can make RLS worse. I’m sure others here have guided you towards The Mayo Clinic as it tells you everything you need to know about RLS and it’s also helpful if your new doctor reads it as well. I understand the medical profession in America is a lot more enlightened than here in the UK where they no next to nothing and we have to fight to get them to understand the basics.

Yes I will pray for you that you will receive the care and understanding you deserve and that you will also be given the strength and determination to withdraw from Ropinirole and finally that you will have support from your new Doctor.

My very best wishes HipHop1972 🙏

[6236 in reply to HipHop1972]

Thank you so much for your encouragement! I saw my new doctor yesterday Dr Kendall Nichols who sat and discussed everything with me for over an hour! He was absolutely amazing! He has worked with one of the best doctors in RLS treatment and promised me that he would be there every step of the way though augmentation. He said that it would take time and it would get rough before it got better but he would do everything he could to help. So he’s gathering all my medical records and wants a full iron panel and a sleep study done and after he sees the results we will begin the process of coming off that poison.

[HipHop1972 in reply to 6236]

Hello 6236. Oh that’s just amazing and he sounds like the sort of doctor we all deserve. With that kind of support and encouragement you will beat the beast. So pleased to read your post

Regards HipHop1972

[Helthom]

Hi 6263.

Thank you for your post. It is very encouraging. I wrote a longer reply about my experience but it has not been posted. I wonder if admin can please tell me why?

Wishing you good luck and freedom from RLS in the future.

[SueJohnson in reply to Helthom]

Message Kaarina and ask her. Look to the top and right side of this post and you will see the link to contact her.