Part 2 of poll questions. OPEN TO ALL
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I feel like my sleep doctor is willing to do just about anything but there are so many things to try and no consistent responses among WED patients so it's tough. Since mine is genetic, my kids will likely get this in their 30's but I would hope treatment options are better for them.
t has been a year since I've been diagnosed...Things have improved with iron and vit d supplements and recently with the pricey amino acids but too often the WED breaks through even the heaviest medicinal defenses--so discouraging. I hope my kids go go the doctor and s/he says, "take one of these pills each day and you're cured" *that* would be awesome.
So I guess it would be Yes the best care available at the moment but No not the best care we as a society could be giving to us poor saps with WED.
t has been a year since I've been diagnosed...Things have improved with iron and vit d supplements and recently with the pricey amino acids but too often the WED breaks through even the heaviest medicinal defenses--so discouraging. I hope my kids go go the doctor and s/he says, "take one of these pills each day and you're cured" *that* would be awesome.
So I guess it would be Yes the best care available at the moment but No not the best care we as a society could be giving to us poor saps with WED.
Tracy
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.
This note isn't part of the poll.
TRACY, I wonder, perhaps your sleep doc would be willing to give you a mild pain killer, I take Tylenol-Codeine #3, has 30mg of codeine in it, and it controls my RLS. After getting on that, I visited a neurologist, who I still see today, and he tried all the other categories of drugs on me, and none of them worked right and some made me worse. So, of course I stuck with the codeine. I have read the literature and what people say here, and while it may not be true for 100 percent of RLS people, nearly everyone who takes an opiate type drug gets relief, period. So, if you haven't tried such a pill, it could be it will make you feel better for good. Oh, the RLS breaks thru now and then, like when I take an antihistimine or overuse my legs, but compared to the six months I experienced of abject misery and near insanity before a doc gave me the codeine, I cannot complain at all about my type of treatment. Let us know. GG
TRACY, I wonder, perhaps your sleep doc would be willing to give you a mild pain killer, I take Tylenol-Codeine #3, has 30mg of codeine in it, and it controls my RLS. After getting on that, I visited a neurologist, who I still see today, and he tried all the other categories of drugs on me, and none of them worked right and some made me worse. So, of course I stuck with the codeine. I have read the literature and what people say here, and while it may not be true for 100 percent of RLS people, nearly everyone who takes an opiate type drug gets relief, period. So, if you haven't tried such a pill, it could be it will make you feel better for good. Oh, the RLS breaks thru now and then, like when I take an antihistimine or overuse my legs, but compared to the six months I experienced of abject misery and near insanity before a doc gave me the codeine, I cannot complain at all about my type of treatment. Let us know. GG
"It's not how old you are; it's how awful you feel."
dogeyed wrote:This note isn't part of the poll.
TRACY, I wonder, perhaps your sleep doc would be willing to give you a mild pain killer, I take Tylenol-Codeine #3, has 30mg of codeine in it, and it controls my RLS. After getting on that, I visited a neurologist, who I still see today, and he tried all the other categories of drugs on me, and none of them worked right and some made me worse. So, of course I stuck with the codeine. I have read the literature and what people say here, and while it may not be true for 100 percent of RLS people, nearly everyone who takes an opiate type drug gets relief, period. So, if you haven't tried such a pill, it could be it will make you feel better for good. Oh, the RLS breaks thru now and then, like when I take an antihistimine or overuse my legs, but compared to the six months I experienced of abject misery and near insanity before a doc gave me the codeine, I cannot complain at all about my type of treatment. Let us know. GG
My sleep doctor is willing to try narcotics but now I am at a point that it's not quite bad enough to go on them. The amino acids have helped tremendously and I am continuing the iron and Vit D. I also quit my job due to this disease so I can sleep in a bit more at a time when the WED is subsiding and actually get some quality sleep. I am probably at a 1-2 hour sleep deficit each night - the point at which you are not desperate but not fully functional either. Nothing compared to the 4-5 hour sleep deficit I was dealing with the past few years though.
Also I can't take codeine so I would need to start with a stronger drug, I have quite an addictive personality and I teeter on the brink of major depression daily, made worse since I stopped taking Prozac b/c it made the WED worse and now just have Wellbutrin as a defense.
I say this all not to dismiss the suggestion but more to illustrate how complex figuring out what the "best" care would be. I have never had a disorder where I have felt so discouraged about finding relief. It seems like every treatment for WED has side effects that just trade one problem for another.
/hijacking the thread
Tracy
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.
But you have raised the question in my mind and I will talk to my sleep doctor about options and side effects at my next appt. Thank you.
Tracy
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.