getting worse

[6236]

good morning everyone

I’m very concerned that I have begun augmentation and it is scary for me. The RLS is happening earlier in the day and I have never had that issue before. I can’t sit down for 10 minutes without it rearing its head! Even driving I have symptoms at times. I don’t go to Vanderbilt until April and really have little or no support from my neurologist. There have been a few days when I have taken Ropinirole 3 times at 4 mg each just to be able to sit. I have used the magna life cream with some success but it doesn’t seem to work as well as it did. I would appreciate any advice on how to get through this until I see Dr Walter’s at Vanderbilt.

[SueJohnson]

Can you tell Dr Cooper that you are augmenting and really suffering and ask for a low dose opioid? If not can you get kratom ? It is legal in Georgia. The recommended starting dose is 2.1 grams. You want red vein. You can make it into a tea. If not increase increase your ropinirole dose a little to stop your extreme suffering . Either way then start reducing as I have advised you before. If you need I can repeat it. There is no reason to wait to see Dr. Walter. He is going to tell you the same thing. The only difference is he will be willing to prescribe an opioid.

[6236 in reply to SueJohnson]

Good morning Sue. I apologize for not getting back sooner but I have had a lot of stuff going on along with my RLS but I have finally contacted Dr. Cooper and he said that I was probably augmenting but all he was willing to do was increase the Ropinirole to 4mg 3 times a day and still wants to wait until April to see me. He was unwilling to do anything else. I know I am going to have to start the process of coming off the Ropinirole by following your advice but I’ll be honest with you without something to take to help the process I will never make it. I guess I’m not as strong as I should be but I cannot bear the thought of the agony of of going through that. I have found a reliable source for Kratom and will order some if necessary. Now I have been contacted by Emory here in Atlanta because I had inquired about Dr. Rye who is the best here in Georgia for RLS but he is not accepting new patients. Emory has informed me that they have two doctors that have worked closely with Dr. Rye and I have an appointment with one Friday morning. I feel like I am grasping at straws trying to find a doctor that will truly help and I feel that Dr. Walter in Tennessee would but the issue of him being out of state is a problem because I will have a hard time getting my primary doctor to prescribe opioids. If this works at Emory Friday it would solve a lot of problems. I know you and others are tired of listening to me but with the other issues I have going on right now including severe anxiety and depression I know without some kind of help I would never make it through augmentation. I want to thank you and others for listening and understanding and helping me through this it has been so nice having your support!

[SueJohnson in reply to 6236]

My god - you are on 8 mg, twice the max dose, and he suggested increasing it to 12 mg. That's criminal!!! I have made a note to never recommend him.

Nobody is tired of listening to you. That is what we are here for and to try and help.

I'm glad you found someone at Emory and you were able to get an appointment right away. What is his name? I hope the appointment goes well. Do let us know

[6236 in reply to SueJohnson]

The doctor at Emory isKendall Nichols. I will find out if he is going to be able to help me and I will certainly let you know what he says. I still have the appointment with Dr. Walter in April. I have found a source for kratom on line and will be ordering some. And please don’t feel bad about missing Emory I had seen them on the RLS foundation website but it said they were not taking new patients. I guess they changed.

[SueJohnson in reply to 6236]

I am so sorry! I feel terrible. I don't know how I missed it but Emory is a Quality Care Center for RLS just like Vanderbilt. I especially feel bad for your suffering during the delay while you saw Dr. Cooper when you could have gone to Emory all along.

[Joolsg]

You don't have to wait until April. Most of us started the reduction process without any help from doctors.Start now. Reduce by 0.25mg every 2 weeks.

Ask your GP to arrange the full panel iron blood tests so you can start takimg iron supplements at night.

Do NOT increase the dose of Ropinirole, however strong the temptation. It will simply prolong the suffering.

If cannabis and kratom are legal in your state, buy some and use at night.

Paradoxically, some people notice an improvement in Augmentation when they reduce to around 2mg. It's the last 1mg reduction that is truly hellish.

So start now.

[C82021]

Unless Im very much mistaken, Dr Walters has retired. you may want to investigate. I say this because I wanted to see him and was told this. I've heard Dr. Kanika Bagai was good.

[6236]

I actually have an appointment with Dr. Walters in April so unless I was misinformed he’s still practicing. My concern with seeing Dr. Walters is him being out of state and the issue of getting a doctor here to work with him

[ProudGreatNana]

I have no advise since I am going thru the same thing. I started taking my vitamins before bed & that has helped immensely as far as getting to sleep most nites; and staying asleep. But now my legs are jumping before noon. Since starting on my vitamins, I am wondering if possibly it is one of those? I started on a Multi-vit for senior women, tumeric, magnesium, B-Complex. Was also taking zinc, D3, and fish oil. Dr. said I didn't need the D3. Had plenty in my vitamin. I am looking for any suggestgons. Sad thing, I was just starting to cut back on the Ropinirole by 1/4 pill a day. Now back up to full dosage.