Ann, I'll try to participate here as much as I can. I haven't been able to work for nearly two years now, and I really need to have more purpose in my life. I can only sit and stare at the setting sun for so long until one of two things happens...either my RLS makes me want to leap out of my chair, or sleep deprivation gets to me, and I end up falling out of the chair. Ain't the golden years swell?
By the way Ann, I seem to remember a few years ago that this section of the forum had several threads discussing the use of narcotics and their procurement from physicians. I also remember that there were a few posters who suggested "natural" remedies in lieu of the evolving pharmaceutical approaches.
As I recall (which doesn't say much these days), there were a few heated exchanges between those of us who had suboptimal responses to the non-pharma approaches, and those that felt that we, as a group, were all drug-seeking morons.
Like you said: many different reasons for people to pass through these electronic doors. Hopefully, not too many people in need of this forum's wealth of information from experienced and well-meaning members walked (or ran) away from this site because of the bruhaha (is that really a word?).
Zach, I've had 3 neuros suggest taking Lyrica. I've got samples of 50 and 75mg, and so I think the time has come for me to finally give the stuff a fair trial. Last night I tried to get a "jump" on the pain and RLS, and started medicating with the gabapentin and hydrocodone at 7pm. While my symptoms of discomfort didn't materialize like they usually do, I think I was experiencing some kind of paradoxical stimulation from the hydrocodone/clonazepam/gabapentin combination. I think I remember reading one of your posts where you refer to that phenomenon.
Right now, with a one-week trip back to the Chicago area set to begin on Saturday morning, I don't want to "rock the boat" medication-wise until our return on the 15th. Then I'll try the Lyrica again. The only problem that I remember experiencing when trying Lyrica in the past was insomnia caused by a lack of gabapentin in my system...the doctors didn't seem to think that taking both meds would be a good idea.
So when I re-try the Lyrica, I'll see if I can either adjust to the change in meds, or ask one of the doctors to prescribe a sleep-aid after discontinuing the gabapentin and while reducing my clonazepam dose at the same time. I'll just deal with the stuff as it happens.
Have a good evening all.
---Andy
Hydrocodone vs Oxycodone
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SquirmingSusan
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- Contact:
Andy, it's good to see you around.
Lyrica works similarly to Neurontin, so if the Neurontin works for you you might just want to stick with it. Especially since it comes in a generic now and Lyrica doesn't as far as I know. It seems like Lyrica is better though in that you don't have to keep taking more and more of it for it to work. Some people can take one but not the other because of side effects. Lyrica made me feel quite stoned, but gabapentin was OK. So it all depends on what works for you.
One reason why this forum isn't as active as it once was is that there are several other forums out there. Many of the formerly active members of this forum can be found on the RLS Foundation facebook page.
Also, I think people are more likely to get adequate treatment for RLS these days from primary care doctors, at least if they can tolerate Requip or Mirapex. Those of us who have problems with those meds are the ones who are seeking more information and are the ones who are finding their way into this group. The quality of information here can't be beat, IMO. As opposed to some other forums where there are well meaning, but not very educated, people. I've read a lot of misinformation out there on other forums.
Lyrica works similarly to Neurontin, so if the Neurontin works for you you might just want to stick with it. Especially since it comes in a generic now and Lyrica doesn't as far as I know. It seems like Lyrica is better though in that you don't have to keep taking more and more of it for it to work. Some people can take one but not the other because of side effects. Lyrica made me feel quite stoned, but gabapentin was OK. So it all depends on what works for you.
One reason why this forum isn't as active as it once was is that there are several other forums out there. Many of the formerly active members of this forum can be found on the RLS Foundation facebook page.
Also, I think people are more likely to get adequate treatment for RLS these days from primary care doctors, at least if they can tolerate Requip or Mirapex. Those of us who have problems with those meds are the ones who are seeking more information and are the ones who are finding their way into this group. The quality of information here can't be beat, IMO. As opposed to some other forums where there are well meaning, but not very educated, people. I've read a lot of misinformation out there on other forums.
Susan
Susan,
Good to hear from you again.
The only reason that I'd try Lyrica over gabapentin at this point is because gabapentin, at the 1200mg I'm taking each night, doesn't really help with the early evening RLS and neuropathic pain (spine surgery 2 years ago) much at all. I think that's why the neurologists I've seen both here and in Illinois suggest that I try the Lyrica...it seems that they think it might work better than the gabapentin for these symptoms.
Gabapentin's sedative properties do seem to help me with sleep, however, although lately my sleep has been a problem even with the gabapentin.
It's funny how medications affect people differently. Some years ago, when I tried to start dosing gabapentin during the day (at the suggestion of one of my doctors), my mind went completely blank for a while...couldn't remember things that I'd known for years...password combinations to access my employer's centralized computer system was one of these things that drew a blank in my mind. It was kind of scary, so I subsequently used gabapentin only towards the end of the day, when I didn't need to remember much of anything.
There is one possible adverse effect of the medications I'm taking (or maybe yet another neuro-muscular condition)...I've been experiencing a need to move my mouth (it''s kind of difficult to explain). I find myself trying to relieve a "tension" in my upper lip/gum region by moving my mouth in weird ways.
If I remember correctly, I think this might be called "oro-facial dyskinesia", or some kind of "extra-pyramidal" reaction. I used to experience some of these symptoms when I was taking selective serotonin reuptake inhibitor anti-depressants in the past. Since these meds made my RLS worse, I discontinued them.
The only meds I'm taking now are Cozaar (hypertension), 1200mg gabapentin, 1 to 1-1/2 tablets of hydrocodone 10/325, and 1-2mg of clonazepam. I've been taking all of these for a few years now.
Never accessed facebook...I suppose it's about time I get up to speed with emerging technology, although I seriously doubt that I'll ever "tweet" or even text anyone. I can't see for the life of me, how people can use their thumbs on wireless devices to communicate...with all of the features now packed into these devices, I can barely see the screens, let alone get my big thumbs on the miniscule keyboards.
Thanks for your advice here, and I hope that the next week goes well for all of you.
My wife and I are flying back to Illinois for a week (flight leaves tomorrow morning), and I don't know what my online access will be like until we return on the 15th.
--Andy
Good to hear from you again.
The only reason that I'd try Lyrica over gabapentin at this point is because gabapentin, at the 1200mg I'm taking each night, doesn't really help with the early evening RLS and neuropathic pain (spine surgery 2 years ago) much at all. I think that's why the neurologists I've seen both here and in Illinois suggest that I try the Lyrica...it seems that they think it might work better than the gabapentin for these symptoms.
Gabapentin's sedative properties do seem to help me with sleep, however, although lately my sleep has been a problem even with the gabapentin.
It's funny how medications affect people differently. Some years ago, when I tried to start dosing gabapentin during the day (at the suggestion of one of my doctors), my mind went completely blank for a while...couldn't remember things that I'd known for years...password combinations to access my employer's centralized computer system was one of these things that drew a blank in my mind. It was kind of scary, so I subsequently used gabapentin only towards the end of the day, when I didn't need to remember much of anything.
There is one possible adverse effect of the medications I'm taking (or maybe yet another neuro-muscular condition)...I've been experiencing a need to move my mouth (it''s kind of difficult to explain). I find myself trying to relieve a "tension" in my upper lip/gum region by moving my mouth in weird ways.
If I remember correctly, I think this might be called "oro-facial dyskinesia", or some kind of "extra-pyramidal" reaction. I used to experience some of these symptoms when I was taking selective serotonin reuptake inhibitor anti-depressants in the past. Since these meds made my RLS worse, I discontinued them.
The only meds I'm taking now are Cozaar (hypertension), 1200mg gabapentin, 1 to 1-1/2 tablets of hydrocodone 10/325, and 1-2mg of clonazepam. I've been taking all of these for a few years now.
Never accessed facebook...I suppose it's about time I get up to speed with emerging technology, although I seriously doubt that I'll ever "tweet" or even text anyone. I can't see for the life of me, how people can use their thumbs on wireless devices to communicate...with all of the features now packed into these devices, I can barely see the screens, let alone get my big thumbs on the miniscule keyboards.
Thanks for your advice here, and I hope that the next week goes well for all of you.
My wife and I are flying back to Illinois for a week (flight leaves tomorrow morning), and I don't know what my online access will be like until we return on the 15th.
--Andy
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Polar Bear
- Moderator
- Posts: 8822
- Joined: Tue Dec 26, 2006 4:34 pm
- Location: United Kingdom
I vaguely recall hearing something somewhere from someone else about their jaw being affected. Sorry I can't remember much about it.
Hope you and your wife have a great trip and that your 'legs' behave themselves on the flight.
Hope you and your wife have a great trip and that your 'legs' behave themselves on the flight.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
The trip to Chicago last week went well, but I'm glad to be back home in Alabama.
I hadn't flown in 9 years...failed the metal detector 4 times in Pensacola...and on the way back, flying from Atlanta to Pensacola, after lifting my mother-in-law's carry-on into the overhead storage I did something to my low back...and this set my RLS into overdrive.
I don't know much about the 717 aircraft, except that when RLS is acting up, it's not a good place to be sitting. I should have known better than to lift and stretch to shove that bag into the overhead. I'm thankful that I remembered to put a hydrocodone tablet into my pocket during the flight. Unfortunately, I had to pound my fists into my legs for 30 minutes while waiting for the stuff to kick in. Given a choice, I don't think I'll ever fly anywhere again.
I saw my PCP this morning to talk about my increasing symptoms of RLS and foot pain, as well as the apparent lack of effect of the meds I've been taking (and the resulting sleep difficulty).
He agrees that I might just have developed a tolerance to the meds, and prescribed oxycodone and trazodone. While the gabapentin and clonazepam might not be working well for me now, he suggested that we change one or two meds at a time, to identify which medications might make a difference. So he said to keep taking the clonazepam, and to gradually decrease the dose of gabapentin.
I won't try the Lyrica until I see if the oxycodone and trazodone help me with the pain, RLS and sleep.
I did hear him say that after my last visit to him for the sleep difficulty, RLS and pain, he did some research into treatment options for RLS. And he stated that from what he read, there weren't many more medication options...and immediately a light went off in my sleep-deprived brain!
I was just given the opportunity to give him a copy of the Mayo algorithm, and I didn't have it with me! So, tomorrow I'm going to try to talk with him again and ask him if he'd be interested in reading my copy of the Clinical Management of Restless Legs Syndrome book I picked up not too long ago. Since he's relatively young, and interested in sleep (as a sub-specialty), maybe this might help him to more effectively treat patients with RLS.
Well, it's time to start medicating for the night, so here's hoping that you all have a good night.
--Andy
I hadn't flown in 9 years...failed the metal detector 4 times in Pensacola...and on the way back, flying from Atlanta to Pensacola, after lifting my mother-in-law's carry-on into the overhead storage I did something to my low back...and this set my RLS into overdrive.
I don't know much about the 717 aircraft, except that when RLS is acting up, it's not a good place to be sitting. I should have known better than to lift and stretch to shove that bag into the overhead. I'm thankful that I remembered to put a hydrocodone tablet into my pocket during the flight. Unfortunately, I had to pound my fists into my legs for 30 minutes while waiting for the stuff to kick in. Given a choice, I don't think I'll ever fly anywhere again.
I saw my PCP this morning to talk about my increasing symptoms of RLS and foot pain, as well as the apparent lack of effect of the meds I've been taking (and the resulting sleep difficulty).
He agrees that I might just have developed a tolerance to the meds, and prescribed oxycodone and trazodone. While the gabapentin and clonazepam might not be working well for me now, he suggested that we change one or two meds at a time, to identify which medications might make a difference. So he said to keep taking the clonazepam, and to gradually decrease the dose of gabapentin.
I won't try the Lyrica until I see if the oxycodone and trazodone help me with the pain, RLS and sleep.
I did hear him say that after my last visit to him for the sleep difficulty, RLS and pain, he did some research into treatment options for RLS. And he stated that from what he read, there weren't many more medication options...and immediately a light went off in my sleep-deprived brain!
I was just given the opportunity to give him a copy of the Mayo algorithm, and I didn't have it with me! So, tomorrow I'm going to try to talk with him again and ask him if he'd be interested in reading my copy of the Clinical Management of Restless Legs Syndrome book I picked up not too long ago. Since he's relatively young, and interested in sleep (as a sub-specialty), maybe this might help him to more effectively treat patients with RLS.
Well, it's time to start medicating for the night, so here's hoping that you all have a good night.
--Andy
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ViewsAskew
- Moderator
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- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Andy, sounds like you hit the jackpot with this doctor. I wish none of us had problems...but if we have to have them, at least we could all have great doctors. Not too much to ask, is it????
Hope that something works soon.
Hope that something works soon.
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Took 50mg of trazodone last night, decreasing gabapentin from 1200 to 800mg, 1mg of clonazepam, and 1 tablet of the oxycodone/acetaminophen last night. One thing about taking trazodone for me is the amount of "dreaming" I experience while I sleep...but at least I'm asleep!
The first hour this morning I've been coughing a little, so I think that some respiratory depression might have occurred last night, but I did get to sleep.
So, tonight I'll try decreasing the clonazepam to .75mg, and keep the other meds at the same dosage. I'll adjust things as best I can, keeping dosages/meds within the limits that my doctor prescribed.
Yes, Ann, we all deserve good doctors, and when I have the opportunity to help them by offering resources like the well-researched and documented books, or the algorithm from the Mayo Clinic proceedings, I'll do what I can.
I think I mentioned this once before in another thread, but any RLS treatment information that we can provide to any of our doctors willing to receive this information can be of immense benefit...not only in our own treatment, but in the treatment of so many others with this disease.
Well, I just printed out another copy of the Algorithm, and I have the Hening and Buchfuhrer Clinical Management book ready to lend to my doctor, so I'll give his office a call and ask if he's in today. If so, I'll drop them off for him...I'm really fortunate that my PCP is only about 3 or 4 miles from my home.
Hoping you all have a great day today.
--Andy
The first hour this morning I've been coughing a little, so I think that some respiratory depression might have occurred last night, but I did get to sleep.
So, tonight I'll try decreasing the clonazepam to .75mg, and keep the other meds at the same dosage. I'll adjust things as best I can, keeping dosages/meds within the limits that my doctor prescribed.
Yes, Ann, we all deserve good doctors, and when I have the opportunity to help them by offering resources like the well-researched and documented books, or the algorithm from the Mayo Clinic proceedings, I'll do what I can.
I think I mentioned this once before in another thread, but any RLS treatment information that we can provide to any of our doctors willing to receive this information can be of immense benefit...not only in our own treatment, but in the treatment of so many others with this disease.
Well, I just printed out another copy of the Algorithm, and I have the Hening and Buchfuhrer Clinical Management book ready to lend to my doctor, so I'll give his office a call and ask if he's in today. If so, I'll drop them off for him...I'm really fortunate that my PCP is only about 3 or 4 miles from my home.
Hoping you all have a great day today.
--Andy
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Polar Bear
- Moderator
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- Joined: Tue Dec 26, 2006 4:34 pm
- Location: United Kingdom
Great you got some sleep last night.
Good luck again tonight.
Good luck again tonight.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
Thanks Polar Bear,
I've become cautious about celebrating the successes of my RLS treatment. I now also know that if the medications I'm taking lose their effectiveness in time, then I can try another medication or combination.
I've also noticed that medications that haven't worked out for me in the past can sometimes work well for me at another point in my walk with this disease...I think it's probably because my body (and its response to medications) is constantly changing.
For me, adverse effects of medications seem to come and go with the passage of time. And so I have to remember not to exclude any treatment option simply because it didn't agree with me earlier...maybe this time it will work, and without any problems.
Hoping you have a great day (or night...I've forgotten that you're quite a bit ahead of our time here in the midwestern U.S.)
--Andy
I've become cautious about celebrating the successes of my RLS treatment. I now also know that if the medications I'm taking lose their effectiveness in time, then I can try another medication or combination.
I've also noticed that medications that haven't worked out for me in the past can sometimes work well for me at another point in my walk with this disease...I think it's probably because my body (and its response to medications) is constantly changing.
For me, adverse effects of medications seem to come and go with the passage of time. And so I have to remember not to exclude any treatment option simply because it didn't agree with me earlier...maybe this time it will work, and without any problems.
Hoping you have a great day (or night...I've forgotten that you're quite a bit ahead of our time here in the midwestern U.S.)
--Andy
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cornelia
I so agree with you Andy. Medications can work so differently fom time to time. Used in combinations they can work differently as opposed to on their own. I change 1 of my 4 RLS meds every 6 to 7 weeks; the most difficult couple of days are when I stop Requip, but it is the only way to have some short but wonderful days in which I really feel happy until they wear off again. I feel best on a double dose of OxyContin, but I will only take this double dose for 8, 9 days, because I know I will build a tolerance and I want to step higher and higer on the med's ladder.
Good luck Andy, you deserve it.
Corrie
Good luck Andy, you deserve it.
Corrie
It's good to hear from you again Corrie, and thank you for your well-wishes.
It sounds like you've acquired some insights into your condition, and how you respond to the medications you're using.
I once had a doctor that suggested a one-day "medication vacation" once every week or two, so that the medication's effectiveness would continue.
I know what you mean when you refer to those really good days when whatever medications and dosages we're using make us feel so very good. If only we could sustain our medications' effectiveness without having to go through the discomfort of discontinuing one or more of them.
But, whatever relief we get is better than none at all. And, unfortunately, there are just too many people with RLS who for one reason or another don't find any relief. My prayers are for these people that they might find effective treatment.
--Andy
It sounds like you've acquired some insights into your condition, and how you respond to the medications you're using.
I once had a doctor that suggested a one-day "medication vacation" once every week or two, so that the medication's effectiveness would continue.
I know what you mean when you refer to those really good days when whatever medications and dosages we're using make us feel so very good. If only we could sustain our medications' effectiveness without having to go through the discomfort of discontinuing one or more of them.
But, whatever relief we get is better than none at all. And, unfortunately, there are just too many people with RLS who for one reason or another don't find any relief. My prayers are for these people that they might find effective treatment.
--Andy