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by stjohnh
Fri Apr 20, 2018 2:59 pm
Forum: Prescription Medications
Topic: Methadone and Gabapentin no longer working well
Replies: 5
Views: 96

Re: Methadone and Gabapentin no longer working well

Deb, I'm sure you know that many of us with severe RLS take multiple medications to handle our symptoms. Indeed low doses of multiple medications seem to work better and have fewer side effects than higher doses of a single medicine. How about adding a tiny dose of pramipexole?
by stjohnh
Thu Apr 19, 2018 3:42 pm
Forum: Prescription Medications
Topic: gabapentin. 600mg. Tapering off
Replies: 12
Views: 108

Re: gabapentin. 600mg. Tapering off

The basis for diagnosing RLS is a combination of symptoms that includes an urge to move the legs that occurs primarily in the late afternoon and evening, usually not painful, and only goes away by moving the legs. Also, except in very severe cases, this problem does not occur at all in the morning. ...
by stjohnh
Thu Apr 19, 2018 3:38 pm
Forum: Prescription Medications
Topic: gabapentin. 600mg. Tapering off
Replies: 12
Views: 108

Re: gabapentin. 600mg. Tapering off

You're on a complicated combination of medicines for what seems to me an unclear diagnosis. If you have RLS and your ferritin is less than 75 then certainly you should get your ferritin up at least over 75 and preferably over a hundred by taking ferrous sulfate tablets along with vitamin C tablets. ...
by stjohnh
Thu Apr 19, 2018 2:16 pm
Forum: Prescription Medications
Topic: gabapentin. 600mg. Tapering off
Replies: 12
Views: 108

Re: gabapentin. 600mg. Tapering off

Hi Snodove, welcome to the RLS community. Even though it doesn't sound like you have RLS, lots of folks here do have considerable experience with gabapentin and may be able to help. The 600 mg of Gabapentin you been taking is a relatively low dose and if it was working in the past I am wondering why...
by stjohnh
Tue Apr 17, 2018 6:54 pm
Forum: Prescription Medications
Topic: Requip and Sleep Quality
Replies: 11
Views: 252

Re: Requip and Sleep Quality

Oozz, Lots of folks on opioids notice the same problem. It is theorized that the urge to move symptom is mainly mediated via the dopaminergic system (which is treated by the DA), but the sleep problems are mediated by the glutaminergic system, which is not addressed by the DA. I take gabapentin, THC...
by stjohnh
Sun Apr 15, 2018 8:47 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Medical Marijuana
Replies: 423
Views: 31833

Re: Medical Marijuana

KySue, welcome to the RLS Community. There are lots of very smart, empathetic and knowledgeable folks here so I'm sure you'll get lots of good information. To directly answer your question I use 15mg THC edible approximately an hour and a half before bedtime. But it is only part of the way I treat m...
by stjohnh
Sun Apr 15, 2018 2:13 am
Forum: Everything Else...just no RLS/WED!
Topic: CELL PHONES - ENGINEER - WARRANTY !!
Replies: 12
Views: 150

Re: CELL PHONES - ENGINEER - WARRANTY !!

I stopped using iPhones a few years ago when I decided that while they worked pretty well they were overpriced for what you got. The last couple of years iPhones have been rated highly by Consumer Reports, but they are not the top rated phones anymore. If you look at the reviews on Amazon iPhones ge...
by stjohnh
Thu Apr 12, 2018 9:28 pm
Forum: General Topics: RLS/WED
Topic: Sleep monitor
Replies: 25
Views: 2401

Re: Sleep monitor

LOL... I was hoping it would improve my daytime feeling using medicines to improve my sleeping, however I haven't found enough clear correlation to actually use the data.
by stjohnh
Sun Apr 08, 2018 9:56 pm
Forum: Non-prescription Medicines, Supplements, Diet
Topic: Vitamin levels that I need to check
Replies: 2
Views: 111

Re: Vitamin levels that I need to check

If the ferritin is low you should take ferrous sulfate 325 mg daily with 500 mg of vitamin C on an empty stomach to help get it up. If you can't get it up then an intravenous infusion may help. Magnesium, vitamin D and vitamin B12 can usually be taken with oral tablets, occasionally vitamin B12 will...
by stjohnh
Thu Apr 05, 2018 3:00 pm
Forum: General Topics: RLS/WED
Topic: Levothyroxine, thryoid and is this why I'm so darn tired?
Replies: 12
Views: 203

Re: Levothyroxine, thryoid and is this why I'm so darn tired?

Ann wrote I'd read about iron, grapefruit, calcium, and a few other substances blocking absorption. One study even showed coffee to inhibit it. When I read that, I was not a happy person as I am not sure I could do anything without coffee!... Ann, this is why I emphasized consistency rather than th...
by stjohnh
Wed Apr 04, 2018 11:05 pm
Forum: General Topics: RLS/WED
Topic: Levothyroxine, thryoid and is this why I'm so darn tired?
Replies: 12
Views: 203

Re: Levothyroxine, thryoid and is this why I'm so darn tired?

Ann, I take levothyroxine for mild hypothyroidism, I have a slightly elevated TSH when off the medication of approximately 5. Playing with the timing of the medication is not going to make any significant difference as it takes several days for one dose to exert its effect. The main point that Steve...
by stjohnh
Sun Apr 01, 2018 6:13 pm
Forum: Just Joined?
Topic: Just joined
Replies: 5
Views: 155

Re: Just joined

Hi Anita, welcome to the RLS community. You will find lots of help, empathy, sympathy and warm support from other folks here. Unfortunately lots of people without RLS don't really get how devastating this illness can be, however you will find that folks here clearly understand. For us to help you th...
by stjohnh
Thu Mar 29, 2018 10:21 pm
Forum: Prescription Medications
Topic: Dipyridamole
Replies: 131
Views: 4225

Re: Dipyridamole

Sorry, I haven't been able to keep my comments about the improvement in normal feeling by using dipyridamole in one post. Legs also wrote in her post of 3/26: I am SO happy with this regime at the moment. I feel normal for the first time in years. I have been taking dipyridamole for over a month now -
by stjohnh
Thu Mar 29, 2018 10:12 pm
Forum: Prescription Medications
Topic: Dipyridamole
Replies: 131
Views: 4225

Re: Dipyridamole

... This research was being done in an effort to find alternatives to dopamine agonists, 4) in addition to dipyradimole, the article also mentions methotrexate as an adenosine antagonist. It would be interesting to find out how many rheumatoid arthritis patients on this drug also have RLS, and 5) f...
by stjohnh
Thu Mar 29, 2018 9:48 pm
Forum: Prescription Medications
Topic: Dipyridamole
Replies: 131
Views: 4225

Re: Dipyridamole

See prior post before reading this one. Note that neither of us talked about a marked improvement in urge to move symptoms, insomnia symptoms, or reduction in current medications. I am starting to think this not normal feeling is a completely separate manifestation restless leg syndrome, not related...

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