October 2023 - New Members

[Rustsmith]

Sunday, October 1

Welcome to

TarHeed Friend, whose friend has been dealing with RLS for years. She had been on Requip and was experiencing augmentation. Pickett Guthrie, a friend from many years ago, recommended Dr. David Rye in Atlanta and she has been seeing him. Recently she went online to their patient portal to find a cancelled appointment for 2024 as Dr Rye is going to focus on research according to the announcement. She was referred to numerous places in GA.
Questions: Aren’t there other RLS specialists at Emory since they are supposed to be a Quality Care center?
Can someone recommend a provider in upper SC. Western NC, or northern GA? Near Greenville, SC or Asheville, NC?
Where and when will the new Nidra TOMAC device be available? I was surprised that I can’t find anything about this new FDA approved device on the RLS website. Does anyone know?
Thanks so much!
She hasn’t slept in a week so I’m trying to help her.

Your best bet at this point is to call the RLS Foundation and ask them. Their phone nunber is 512-366-9109 and they are located in Austin, Texas, which is in the Central Time zone.

[Polar Bear]

Tuesday 3 October 2023

Welcome today to

KellyE whose RLS has made her life miserable. Augmentation from ropinerole has required she takes massive amounts of opiates along with gabapentin. KellyE still seldom sleeps and is groggy and tired all the time.

RLS is indeed miserable. If you will make a post giving us details of your RLS history, your treatments past and present including dosages we will do our best to try and help.

[Rustsmith]

Thursday, October 5

Welcome to

mssteinbrink, whose RLS has been a significant part of life for the past 20 years. She has found medication to be helpful, but nows need support as new health conditions and medications have interfered with her current RLS treatment.

There are four tiers of treatment for RLS. You can find them described in the link in my signature. If you have any questions or would like more personalized advice, just post a message and we will do what we can.

[Polar Bear]

6 October 2023

Welcome today to

Lindajo who used to have RLS once or twice a week but now almost every night. She needs relief and to sleep! Too tired to do normal activities . Needs help.

We will do our best to help you. There is information about the treatment of RLS in the link in my signature and also on the various Forums here on the Discussion Board. If you have any questions just make a post and ask. All we will need is some information of your treatment, medications if any, and what has and has not worked for you.

[Polar Bear]

7 October 2023

Welcome today to

szigmond09 whose RLS is a daily stuggle. He has to carefully want his schedule to get enough sleep-- and nap when he doesn't get enough

Sleep is a big issue for us RLS sufferers. Ordinary sleeping medications don't really help us. If you have any questions please post and give us some background information to help us try to help you.

[Rustsmith]

Saturday, October 7

Welcome to

ginasun49, who has been struggling with RLS for years and the symptoms are increasing. She is looking for tips.

We would be happy to help you out. All that you need to do is to post a message that gives us an idea of what you are currently doing, or have already tried, so that we will know where to start.

[Rustsmith]

Saturday, October 7

Welcome to

Granny1204, who has suffered RLS for over 40 years Apparently in the worst 6% according to neurologist She has been on Sifrol (pramipexole) 0.75 for over 20 years and now suffers augmentation with severe sleepiness day and night, light headiness and dizzy spells. She wants to get off it drug but because of the augmentation it is almost unbearable.

The key to getting off of pramipexole when augmented and at the dose you are taking is to find a doctor that is willing to prescribe about a week's worth of an opioid (any opioid). Only opioids can cover the withdrawal symptoms and it takes about a week. WIthout an opioid and coming down off 0.75mg, it is very difficult. You will need to taper the dose down to about 0.25mg before stopping. During the taper, you will get very little sleep. And then when it comes time to stop, it gets worse. You will get zero sleep (not even naps) for about 7 days and will experience the worst RLS you have ever had. Give any remaining pills to someone to hide, because around day 4 you will weaken and take one just to get some rest. Unfortunately, that means that you will have to start all over again.

Also, please be aware that it is important to taper when coming off the dose that you have been taking to avoid DAWS (dopamine agonist withdrawal syndrome). DAWS is not the same thing as pramipexole withdrawal. It is a permanent neurological condition that causes symptoms such as severe depression, anxiety and migraines and is not treatable.

Here are links to two documents that you should read, highlight key passages and then share with your doctor.
https://www.mayoclinicproceedings.org/a ... X/fulltext
https://www.mayoclinicproceedings.org/a ... 0/fulltext

[Rustsmith]

Tuesday, October 10

Welcome to

Nhartt0917, whose RLS has affected relationships and Nhartt's own feeling of self worth.

There are many ways to treat RLS to bring the symptoms under control. Please post a message telling us a bit about what you are currently doing to manage your RLS so that we can provide suggestions. Although RLS can be difficult to deal with, there is no reason to suffer and let it effect your mental state. Think of it as a competition and you cannot let the RLS win!

[Rustsmith]

Wednesday, October 11

Welcome to

jannie, whose RLS drives her insane. She can't keep her legs still to sleep & wears a cpap. She takes medication & it helps at times. She also walks everyday. Nothing seems to help!

Not all medications work equally. Take a look at the document under my signature to learn the various options available, including iron therapy to elevate ferritin levels. And if you have any questions, feel free to post a message so that we can try to provide you with help.

[Rustsmith]

Friday, October 13

Welcome to

scotthundley, who has been on pramipexole for about 11 years and augmentation has hit. He is currently going through withdrawal and basically hasn't slept for almost 2 weeks. He is hopeful this will end soon and likely will move over to Horizant.

If you are have been down to no pramipexole now for about a week, then things should start to improve slowly. The entire process takes about a month after completely stopping if you do not have access to an opioid to help with the withdrawal. If you have any questions, feel free to post a message and we will do our best to answer them.

[Polar Bear]

16 October 2023

Welcome today to

Deane who is 72 years old. RLS started back in the 90s when he went onto antidepressants. He tried the RLS prescribed medications which worked for a month. Is currently on carbidopa-levadopa one and a half dose x 3 times daily (25-100 dose) which has started to lose its effectiveness.

C-L is not a medication that should be used constantly to treat RLS. It is very useful in a one off situation but used regularly will cause augmentation. This may be what is happening to you. You will find information in the Augmentation Forum - see if any of it feels familiar.
If you make a post providing your rls treatment history and we will do our best to help.

[Polar Bear]

Wednesday 18 October 2023

Welcome to

sgodwin136 who is finding rod is causing insomnia.I

Insomnia is what causes many of us to first seek help. If you will make a post telling us how you and your doctor have been managing your symptoms we will do our best to guide you to better sleep.

[Rustsmith]

Wednesday, October 18

Welcome to

Ananban, who has had RLS for 1.5 years with no solution. Ananban's GP cannot help.

Take a look at the document that appears in the link in my signature, print off a copy, highlight a few sections that seem relevant to you and then give it to your GP and ask what (s)he thinks about what these experts have to say about possible treatments for your RLS. And if you have any questions or would like further suggestions, feel free to post a message and we will do what we can to help you out.

[Polar Bear]

Wednesday 18 October 2023

Welcome to

Ananban who has had rls for 1.5 years and finds his/her GP cannot help.

This is often the case and we find ourselves having to try and educate them ourselves. The link in my signature is a good guide if your GP was willing to accept it. Reading the Just Joined Forum would be a good starting point for you. Please post and ask questions. Giving us some information on how you have been managing your symptoms so far will help us try to guide you.

[Polar Bear]

Sunday 22 Ocober 2023

Welcome today to

Psiler11 whose RLS has affected life 7/24 and it's hard to keep going without sleep.

Sleep is what drives most RLS sufferers to seek help but all is not lost. Usually with the medications that are best for us we manage to improve things. If you will make a post and tell us about your current management of your symptoms and what medications have or have not worked we will do our best to help.