I an 78 years old and have had RLS for many years. However, it is getting worse. I take 1800 mg gabapentin and am weaning off of Requip. I just saw my neurologist who has prescribed gabapentin and requip for me. However, now he says that I have Akathisia which makes no sense. I now have an appointment to see another neurologist, but I don't know if he knows anything about RLS.
Does anyone know of a Oklahoma doctor in Oklahoma City or Tulsa who would know about RLS?
Thanks. My restless legs have been relentess lately.
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Littlegran
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Hi littlegran, sorry to hear about your relentless RLS. The most likely culprit is the requip and coming off it. Whereas coming off the requip is a good idea, if you go too fast it can be more difficult than necessary. Also, weaning down often brings temporarily increased symptoms with every reduction, and it is difficult to avoid that completely.
One thing is to take it slow and in small steps. That means, reducing a little bit at one time, then wait for the (increased) symptoms to settle, and wait a little longer (several days at least) before your next reduction. Gabapentin will not help much during this prolonged phase of weaning down the requip. It will/may only start to work some time after your last requip dose. And then, it does not always work for people who have been on a dopamine agonist like requip for a long time. The only thing that may help during the weaning down process is painkillers. Tramadol is a frequently prescribed and often helpful medicine. Sometimes the weaker codeine is enough, sometimes one needs a stronger opioid, like oxycodon. Methadon and buprenorphine, opioids with long half lives are used after weaning down from dopamine agonists if the RLS remains severe.
If you are reducing the requip because it no longer worked or even had augmentation (worsening of the RLS due to the requip), be vigilant that you do not increase the dose or get switched to another dopamine agonist like pramipexole/Mirapexin/Sifrol or rotigotine/Neupro patch. They may give relief temporarily, but the augmentation will return, most likely fairly quickly.
I just checked at rls.org, the US patient organisation. The nearest quality care centre, headed by Dr William Ondo, a reputable RLS specialist, is in Houston, Texas, the Houston Methodist Neurological Institute. Rls.org also has support groups, but there is not one in OK.
It may be wise to add to your post and ask if someone knows a knowledgeable doctor in OK. Otherwise, maybe contact rls.org, as the recommended doctors on their website do not always follow the latest guidelines. It will pay to become a member as they have loads of good information.
Finally but importantly, download and read this paper (link follows). It has the most recent updated guidelines for the treatment of RLS. It is well structured and the boxes summarise the crucial information about treatment:
Meanwhile, stay safe with respect to the tornados. I lived for a short while (7 months) in Stillwater OK and learned the drill. But there were some fierce ones recently; it even made the news here in The Netherlands.
Thank you LotteM for a wonderful reply. I am going slow with the requip reduction. I feel like I have had augmentation, but when I mentioned this to my neurologist, he did not know what I meant. I have read the Mayo paper which is excellent. I also am a member of rls.org. I have read about Dr. Ondo in Houston and may try and see him if I don't get help from the new neurologist here in Oklahoma City.
Again, thank you for taking the time to give me wonderful information.
This is one of the most common scenarios out there too many doctors don't want to read the scientific literature, such as the Mayo paper on medication . Its a sad situation when our neurologist's won't take the time to read up on the current papers available to read. If you can see Dr Ondo you will be in great hands. You are your own best advocate.
Hi I live in Texas and Dr. Ondo is my beurologist and I can vouch for him and his staff. He specialises in RLS and is one of the very few in the entire US who knows how to deal with this horrible condition. I highly recommend him. He’s a nice person who will take time with you. I credit him with changing my life for the better. Please don’t hesitate to make an appointment. Blessings!!
SueJohnson may have a note of a good RLS doctor or neurologist in Oklahoma.
Meanwhile the RLS Foundation lists a Dr Robert Gordon in Oklahoma City. He may have been recommended by someone or he may have put himself forward as having an interest in RLS: this doesn't necessarily mean he's completely up-to-date with current best practice.
His bio says that he is a pulmonologist who "subsequently studied sleep medicine at the Stanford School of Sleep Medicine and was one of the first physicians in Oklahoma to become certified by the American Board of Sleep Medicine. Dr. Gordon is board-certified in Pulmonary and Sleep Medicine through the American Board of Internal Medicine."
If you contact him, you need to ask him - or anyone else you contact - whether he/they follows the Mayo Algorithm for the management of RLS:
If not, don't pursue: you could end up spending a load of time and money on someone who doesn't give you the best advice.
Robert M. Gordon M.D.
4200 W Memorial Rd Suite 805
Oklahoma City, OK 73120-8359
Business Phone: (405) 286-5946
I note that LotteM has given you some good advice about ropinirole (Requip) and gabapentin. BTW, how are you taking that gabapentin? You know that it's recommended to start treatment 1 to 2 hours before usual onset of symptoms, and that you need to take in doses of no more than 600 mg at a time spaced at least 2 hours apart?
Thank you ChrisColumbus. I got Dr. Gordon's name from rls.org, but I was not sure about his knowledge about RLS because he is a Pulmonary and Sleep Doctor. I have a pulmonologist, and I might ask him about RLS. My husband goes to a pulmonologist who was also one of the first doctors to be certified in Oklahoma. I have had several sleep studies which did not show RLS as a problem, but I often wondered about the study and if it was very good. I have read the Mayo article, as well. I wonder if doctors here would be offended if I showed them the article.
As for the gabapentin, I only take 600 mg at at time and take it 2 hours before the symptons begin. I have been taking this medicine for so many years that I have lost track of when I began. It worked so well for such a long time. Then, I was given Mirapex and Neupro which did not help. Then, I was given 4mg Requip which I have been taking for probably 10 years. Just now, I feel that the Requip was the cause of augmentation; therefore, I requested to wean off which I am doing now.
Let's wait and see whether SueJohnson has a better recommendation. Personally, if a doc took the hump because I referred them to the Mayo Algorithm I'd tie them to a spit and turn their legs over a hot fire and see how they felt about keeping up-to-date on RLS then!
If the doctor is offended, then you don't want him. In fact when you set up an appointment with any doctor it is a good idea to ask if they follow the Mayo Algorithm
I'm so sorry to hear about your RLS flare up. I wanted to put your mind at ease about a doctor being a pulmonologist but also having knowledge of RLS. Pulmonology is one of the specialties that allow doctors to become a sleep specialist. Dr. B is a pulmonologist . Just wanted to set your mind at ease with this.
I may have misunderstood. Does this, on their website, not apply?:
"The Restless Legs Syndrome (RLS) Foundation maintains an online public directory of healthcare providers who specialize in treating patients with RLS. If you would like to be included in the directory, and gain 24/7 access to all of our RLS publications, return this form by mail with $49 annual membership dues.
Note: All applications are reviewed to confirm experience before posting on the RLS Foundation HCP Directory"
Hi from Oklahoma, I use Dr Kristen King in Tulsa at Utica Park Clinic, her new office will be at 6802 S Olympia Ave Tulsa 74132 918-560-3823 right now she is located at 91rst and the Creek by the Hillcrest hospital. There's a doctors office behind the Hospital. She lowered my equip to 2mg (higher doses makes RLS worse). She's a good Dr and works with you and other drugs that help. She is the only RLS Dr in the Tulsa area. I still have flares of RLS but not like I use too. I have RLS since I was 12 and I'm 66 now. Give her a try. They take Medicare.
Thank you for sharing. I would love to give your doctor a call and possibly talk with her. I have baron Requip for quite some time but am presently weaning off because it is a dopamine agonist which can cause augmentation which I have been having. My RLS has been relentless. I am going to try another neurologist in hopes that he understands RLS. So few do here.
Please let me know if you see her and what your experience is with her. I do worry that she only lowered Solarlights dose of requip instead of taking her off it gradually and starting gabapentin or pregabalin.
Sue, I noticed that and wondered why she was on requip. I have an appointment with a new neurologist in Oklahoma City in early June. He is head of the department at one of our hospitals. I will be interested to know what he knows about RLS. I received a great packet today from the Restless Legs Syndrome Foundation. Included, is a packet for your healthcare provider. If I don't get an adequate plan from him, I may call the doctor in Tulsa that Solarlights sees, just for a consultation.
I feel that I need new labs because the last time that I had my Ferritin checked was in April 23, and it was 66. No mention was made to get it higher. My other labs on the same day are as follows: iron 98 ug/dl; Transferrin 262 mg/dl. TIBC Calculated 328 ug/dl and Iron Saturation % 30.
I am still weaning off of Requp. I am down to 2 mg until the 27th of June, then I will go to half of the 2mg for another 2 weeks. I am still on the gabapentin - 1800 mg a day. I have not had an episode for 5 days, which is so incredibly good.
A day without RLS is a day with sunshine and smiles.
That is great that you haven't had an episode for 5 days!
There is no need to wait until June 27th to reduce. That is just drawing it out longer than necessary. But DO NOT reduce by half of the 2 mg tablet. That is WAY TOO MUCH!
You need to ask for .25 mg tablets. Then reduce by .25 every 2 weeks. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one.
My neurologist whom I don’t see anymore, suggested that I cut my 4mg in half then cut that in half again. I questioned cutting in half the 4mg, but he said fine. If I had done that, the tablet would be powder. So, his nurse called in the 2 mg
I will ask for the .25 tablet.
Also, I am taking CBD gummies and CBD oil which is helping with sleep. I had not been sleeping well until I started the CBD.
Sue, what are your thoughts on using CBD oil and gummies along with gabapentin? The CBD has 2 mg of THC. I am having to increase the amount of gummies that I take in order to sleep. I'm still taking 1800 mg of gabapentin spread out as you suggested. But my restless legs is very intermittment. I see my new neurologist on June 11. I asked if he followed the Mayo algorithm and his response was that over the years he has done things that have worked for his patients. Mostly it is what is written in Mayo Clinic RLS algorithm but I do not follow it to the T. I guess I will find out what he means.
Yes you can take the CBD oil and gummies. Just be aware if you experience dizziness, drowsiness, confusion, and difficulty concentrating combining them.
Just take care. I tried CBD oil while on pregabalin and it made me even more spaced out than usual. I even drove through a red traffic light (it was a red turning arrow), and therein ended my experiment! I don’t wish to scare you off however as people respond so very differently to medications and combinations of meds.
amrob123, I would like to not take anything. As for CBD, I don’t think it is worth the trial and error. I thought it helped me at least sleep, but I don’t know about that.
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Time for a change 
Accupuncture and RLS
Augmentation? I'm guessing yes.
Twitching leg in the evening 
