Search found 771 matches

by stjohnh
Tue May 21, 2019 11:24 pm
Forum: Prescription Medications
Topic: Excellent article on opioids
Replies: 12
Views: 114

Re: Excellent article on opioids

Sigh...thank you Steve, Ann, Beth. So here's what I have going: sent a request to my gp for horizant, also requested referral to a neurologist, am going to stop taking Valerian (I read some stories from people who said this and melatonin exacerbated their symptoms), am going to do some serious onli...
by stjohnh
Mon May 20, 2019 5:38 pm
Forum: Just Joined?
Topic: New Member
Replies: 4
Views: 57

Re: New Member

Welcome Doug. There are lots of helpful people here who REALLY understand how miserable this disease can be. Additionally, there are folks with lots of knowledge, experience and compassion. Your story is, unfortunately, very common. Your dose of Ropinirole is too high and you are augmenting. Augment...
by stjohnh
Sun May 19, 2019 10:15 pm
Forum: Prescription Medications
Topic: IRLS Study group and iron IVs
Replies: 13
Views: 363

Re: IRLS Study group and iron IVs

... However, I have read something (here?) pointing out the connection WHY low brain iron could cause RLS, which is not mentioned in the IRLS paper. I think because of lower dopamin production or something? Could someone please point me towards sources? :) I'm asking because I just learned that all...
by stjohnh
Sun May 19, 2019 8:42 pm
Forum: Just Joined?
Topic: Travel
Replies: 3
Views: 36

Re: Travel

Hi again, Most of us with more than mild RLS have travel problems, just as you mentioned, cars and planes are problems, expecially longer trips in the late afternoon. Travel in the morning Be the driver if by car (better than passenger) Walk around frequently Hang out with the flight attendents in t...
by stjohnh
Sun May 19, 2019 3:15 am
Forum: Augmentation
Topic: augmentation with lyrica?
Replies: 3
Views: 41

Re: augmentation with lyrica?

Hi James, Augmentation occurs often with dopamine agonists (Requip, pramipexole, Nupro). It occurs very frequently with Sinemet. It occurs rarely with Tramadol. Doesn't happen with Lyrica. Sounds like your RLS is just getting worse. Have you had your iron (ferritin) level checked? What is the number...
by stjohnh
Sat May 18, 2019 1:02 pm
Forum: General Topics: RLS/WED
Topic: Very Tired
Replies: 83
Views: 883

Re: Very Tired

Thanks for reminding me to check. I usually do with new prescriptions. We usually go to either Safeway or Walmart. The last time I filled it, it was Walmart. At that time my insurance required it be filled there. I just checked and Safeway is cheaper now. If I get it filled again, I will switch. Yo...
by stjohnh
Sat May 18, 2019 1:15 am
Forum: General Topics: RLS/WED
Topic: Very Tired
Replies: 83
Views: 883

Re: Very Tired

... The generic mirapex is what I have and it costs quite a bit... Generic Mirapex should be cheap. I don't take it now, but GoodRX says it is $12 at the local Safeway, $13 at Costco, for 90 tablets, 0.125mg each. (But also says same amount is $81.00 at CVS and $91.00 at Walgreens. It is shameful t...
by stjohnh
Fri May 17, 2019 2:20 am
Forum: Prescription Medications
Topic: Aimovig
Replies: 5
Views: 100

Re: Aimovig

Interesting if this is a real effect. Aimovig is a calcitonin gene-related peptide function inhibitor. Calcitonin gene-related peptide receptors are apparently found throughout the body, but mostly their function is unknown (other than related to migraine headaches). It is possible you have found a ...
by stjohnh
Sun May 12, 2019 8:42 pm
Forum: Just Joined?
Topic: New here, just diagnosed but not sure it really is RLS...
Replies: 22
Views: 298

Re: New here, just diagnosed but not sure it really is RLS...

Weight Loss: In the past month since this has all been going on I have lost 13 pounds! Now, normally I would be thrilled as I have wanted to lose 30 pounds for years now and never managed to lose more than 5. But right now I weigh less than I have in probably well over a decade. I guess it could be...
by stjohnh
Sat May 11, 2019 7:04 pm
Forum: General Topics: RLS/WED
Topic: Scripps Health in San Diego
Replies: 6
Views: 92

Re: Scripps Health in San Diego

You might very well get an Iron Infusion. Your ferritin of 82 says that you have low BLOOD iron. Your RLS says that you have low BRAIN iron. RLS is caused by BID (Brain Iron Deficiency). Many people with RLS can have their symptoms markedly reduced or even eliminated with IV Iron treatments. This is...
by stjohnh
Fri May 10, 2019 5:11 pm
Forum: Just Joined?
Topic: I'm new at this
Replies: 2
Views: 57

Re: I'm new at this

Hi LessRest, welcome to our community of RLS folks! There is lots of help, information and compassion here. There are a bunch of smart people with lots of RLS experience, both personal and as a result of reading these forum postings. As far as your personal treatment, yes you are almost certainly au...
by stjohnh
Fri May 10, 2019 2:14 pm
Forum: General Topics: RLS/WED
Topic: Wonder how this will impact us?
Replies: 4
Views: 52

Re: Wonder how this will impact us?

Interesting theory. While there is research that supports the author's hypothesis, there are also other explanations and the iron easily could be association rather than causation. I looked at a couple of references cited in the article, and the authors of the original research also admitted that ot...
by stjohnh
Fri May 10, 2019 1:50 pm
Forum: Just Joined?
Topic: New here, just diagnosed but not sure it really is RLS...
Replies: 22
Views: 298

Re: New here, just diagnosed but not sure it really is RLS...

Hey all, I know several of you have already spent way too much of your time responding to my posts and concerns, but I would really love to hear your thoughts on my last post about the diagnosis and the treatment plan. Any insight is very much welcome. Mostly sounds reasonable. Only a couple of qui...
by stjohnh
Fri May 10, 2019 1:50 am
Forum: Just Joined?
Topic: New Member
Replies: 5
Views: 126

Re: New Member

Thanks Holland! My ferritin level is 58. Do you think the oral iron will help? Well, that is in the maybe range. Iron is cheap and easy to try, so you definitely should take it for at least two months. 65mg iron (as 325mg Ferrous Sulfate) +500 mg vit C on empty stomach daily. Also, your doc will in...
by stjohnh
Thu May 09, 2019 1:05 am
Forum: General Topics: RLS/WED
Topic: RLS remission - why?
Replies: 7
Views: 97

Re: RLS remission - why?

Welcome to the RLS forum community Dr. Hoskme ! You will find, or have already found, that the members of this board represent a considerable body of knowledge, experience and compassion. RLS is notoriously fickle. For reasons that are unclear, consistent responses to medications or other treatments...

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