I wrote about myself in my bio, so I hope the information is available there. My conditions are not private. I still have to figure out how to fill out the symptom area. It keeps saying 'no match' no matter what I type. Suggestions re anything are always appreciated.
My biggest concern is getting the right RLS medication since I take many others and have had a problem with attenuation while on several meds.
Hi Peter can you post a link to it, I'm having bother getting it.
I wouldn't worry about having the info it btw, I've not entered any info and have received lots of very good advice and help on here.
Start a post saying what you are taking and how effective you are finding it and there will be plenty along to help.
To start you off have a look here:
click on treatment link at left side. And here:
click on ABOUT RLS link at top.
you should get some good info there.
Good luck.
Hi peter, like raffs has said, do a post and tell us what you take it can help us to help you, as there are many meds that can actually make RLS worse. Have you tried any meds for your RLS. ?
Hi raffs, Elisse, Can't find bio either, Probably forgot 'submit'. Do recall I typed attenuation instead of augmentation!
Thank you for the links raffs. I had copied the card but hadn't gotten any further. Since I have Parkinson's, I went right to the meds after your post on links. I take Sinemet for PD. In 2010 I had what they thought was serotonin toxicity, but was dopamine overload. I have to make sure the doctors pay attention to my med list. In the ED they found I was on Sinemet, Mirapex, Requip and clonazepam! All meds were stopped, spent the night in ICU. Clonazepam restarted.
Since 1995 have been on/off Sinemet, Mirapex, Requip, cloazapam, hydrocodone3. About a year ago clonazepam no longer worked and RLS became worse until sitting down was not often a good option. I had gradually had sleeping difficulty that moved into 48 plus hours of no sleep with the RLS "dance". I was exhausted. During the day I would have frequent brief episodes of sleep. I would wake up with my head on my laptop, or on a table in a noisy, light flashing casino deli, sitting in my walker waiting for the bus and during conversation or nearly falling out of my chair at home.
Four weeks ago, I was put on 25/100 mg and 50/200 CR mg Sinemet at 9:00 PM each night. Until today when I was researching this drug combo I was not aware that I was to take them and go to bed as they work in 30 minutes. I was trying to read from my kindle, waiting to get sleepy! Of course, I did not. Tonight I will see if it helps RLS.
Home treatments: massage feet and legs, use warm gel pads(not cold due to Raynauds), walk, try to distract myself with something intensely involving.
My sincere apologies for the length. Nothing is simple to explain with the number of conditions, symptoms and meds.
Current meds: leveothyroxin, Sinemet(4 daily plus the bedtime dose), sertraline, Lyrica, furosemide, potassium chloride, gabapentin, tizanidine, misoprostol, diclofenac. Tylenol 325 mg, multivit/min, methylcobalamin, methlyfolate.
I look forward to any advice the group has to offer. I would really like any 'home remedy' things. Many of my meds cause drowsiness/sleepiness and weight gain. I have appt with PCP and neurologist next week and want to see if the meds could be changed or reduced. The constant fatigue is awful!
"Peter" is a 74 year old female(fooled myself with that choice!). I am a retired registered nurse who specialized in NICU and developmental and mental health follow-up of NICU graduates up to age three. I volunteer in Parkinson's research trials/studies for Parkinson's Disease. I and a friend in Michigan do a lot of paper research into a rare genetic eye disease we have that will lead to probably very low vision(central) though rarely, total blindness. Except for my own health problems I am not well-versed in adult medicine.
Hi Peter, i am hoping that people on this forum who also have PD and unfortunately developed RLS, can comment on what works for them and how they cope having both conditions. Also have you joined the PD forum on HealthUnlocked i am sure there is a forum. You might get more help from those who suffer with both conditions. We are happy to have you here, but i am thinking you may do better with people who understand the Parkinson's side of it and coping with RLS too. 
Good morning! Thank you for good advice Elisse. You are right that it would help to see a forum with both conditions.
There is not a forum for both conditions together, but there is a big forum for PD.
Hi nightdancer,
I am on two PD forums and on one it was asked how many who have PD also have RLS. On one community site, we keep taking polls about who had what disease prior to PD diagnosis. Many may have had RLS, obesity, depression, IBD and migraines. but not all of them. We were looking for possible biomarkers to present to researchers that might lead to earlier diagnosis and treatment for a condition that has no treatment to date and no cure.
Based on that I now think a combined PD/RLS forum wouldn't work because we don't really discuss them as a unit but as an aside. Each disease is complicated enough on its own.
I was thinking later that I don't really know how many have both PD and RLS. Every researcher(MD/scientist), other differ about whether there is a connection. What came first....
People with RLS do not develop PD because of the RLS, but the other way around in SOME studies. Some people make the mistake, and doctors make the same mistake at times, because some of the PD meds have also been approved for use in RLS as well. But, just because some of the same meds are used, does not mean RLS will lead to PD. In Parkinson's, which I studied because my late father had PD, the brain does not produce enough dopamine. In RLS, the neurotransmitters for dopamine do not use the dopamine properly. In RLS, we have enough dopamine, but our brains do not use it properly. Many meds that are used for many other conditions can "block" the dopamine transmitters, like SSRI antidepressants and the tricyclic antidepressants. Those are the most offending meds that can do that. And, you already mentioned augmentation, so I guessing you know what that is. But, with you having PD AND RLS, the line can get kind of blurred. Augmentation in RLS is caused by doses that are too high for the dopamine meds. But, of course, the doses of the same meds used for both conditions are way different. RLS doses are VERY much lower than PD doses, so when one has both diseases, it can get very complicated. Do the higher doses for PD cause augmentation of the RLS? That is one question that may never get answered. Could the higher doses actually CAUSE RLS in PD patients? In the studies you have participated in, what exactly were the studies for that are for PD that you mentioned you have participated in? And, was RLS included or mentioned in these studies? Very interesting. It has been a while, I assume, since you have been an active RN, and how interesting that you specialized in NICU babies! My nephew was born 3 months early, and he has been a total pleasure, but had lots of issues, and is autistic and schizophrenic, but has a master's in computer science and he has a job now working on government drones, among other things. We are very proud of him and all he has accomplished with the hard start to his life, and his continuing health issues. I specialized in psychiatric nursing in school, with a minor is pharmaceuticals. 
So, it came in handy with my nephew who is now 25. Oh, and also was going to ask you, do you have Primary RLS or Secondary RLS? About 70% of all RLSer's have Primary or inherited RLS. My whole family, except my father (he had PD remember) has RLS, me, both my sisters, my 2 nieces, and my oldest niece's kids who are 11 and 8. Plus the 11 yr old sleep walks and we ALL have PLMD as well.
Unfortunately, just as you said some studies continue to go back and forth. One was merely for gathering data re my early symptoms like loss of smell & when, fatigue; had I ever been a farm worker, been exposed to heavy metals; did I have RLS or PLMD or sleep apnea, what medical diagnosis and when diagnosed; what medications was I on or had ever been on; had I ever had a brain injury and how many times and the dates of those. As you know the results of one's participation are never given. I still read of whether or not RLS is due to dopamine depletion. Nearly 75, I doubt I will ever know the cause of PD, RLS or my rare genetic eye disease. For the latter, I may never see a medical or surgical treatment because as you know the process to FDA approval and manufacture of a drug can be decades. I might be lucky if they find a drug with already proven safety and efficacy marketed so it could be shot-tracked for FDA approval. Your nephew is amazing for all he has accomplished given schizophrenia. Did I read that many in the autism groupings are highly intelligent? Your pharmaceutical minor is a great asset for this community. Hopefully, you are able to access new research re drugs. And to the last question. I have primary RLS. However, I don't have anyone except my father to base that on. I have PLMD but don't know if my father did. My two brothers died of glioblastoma(brain) tumors and past generations even though traced back to the 1600's had accidental deaths listed not medical.
I have the same problem when I was trying to do my bio and I gave up.
It's always nice to hear someone else runs into the same brick wall. Thanks. I knew what I was doing the whole time! lol!
I like this web site but every time they make "improvements", glitches pop up. I could not find your profile, but will look again.
I think I put my bio and current meds in a comment section since it did not show up in my profile and I wasn't sure it would if I tried again.
I am guessing your augmentation comes from the PD meds, of course. Have you ever tried any other classes of meds for your RLS only? To keep the dopamine doses down to try and avoid augmentation is the best idea, so maybe another med for RLS would work better? The treatment page on rlshelp.org is golden, except the section on Requip and Mirapex, that still has the old recommended therapeutic dosing for RLS. The doses for RLS are very low. How long have you had RLS, by the way, and have you only taken all the dopamine meds? Some anticonvulsants lie Gabapentin help, and also pain meds, which is what I have to use. I cannot tolerate the dopamine meds at all, make me violently ill, Gabapentin made me gain 60 lbs and my eyes were swelling shut, also the Lyrica did that to me also. I have been thru the list in my RLS journey, and thankfully my doctor listens to me, and she has no issues with treating my RLS with opiates, since they are the only thing that help me at all. And, like I mentioned before, SSRI's and tricyclics just ramp up the RLS dramatically for ME, and will for 99% of us.
I have tried other meds and had problems. I started earlier this month or late last month on oxycodone 2.5 mg, now 5 mg. Hydrocodone was not strong enough. Found out sertraline exacerbated RLS, hence the Wellbutrin.
RLS since 1995. Requip, Mirapex, clonazepam. Don't remember the doses of these. Sinemet was first & taken 'til maybe 2008. I'm weaning off gabapentin as it hasn't worked for years, but doctors wouldn't listen until they saw other pain issues new & old were getting worse over time despite the drug or increases up to 3600 mg.
Sorry, my responses are broken up into different posts. I went back & found I missed questions. Also, I gained 30 lbs. Did not tolerate Cymbalta or Lyrica.
Thoughts please
RLS Survey - PLEASE READ & PLEASE TAKE PART
Please help.. do I have RLS?
More help please
Need advice, please
