Brandy,
About 10 days ago, you mentioned that you were taking Neurontin for PLMS along with Ultram for RLS, and that they worked well together. You probably mentioned it somewhere before, but could you tell me what dosages of each you're taking? Thanks. ---Andy
Neurontin?
Absolutely - I take 1200 mg of Neurontin and 200 mg of Ultram, both in divided doses. I take half of each with dinner and then the other half of each around 9 PM. 1200 mg of Neuronting is a pretty high dose. I think doctors recommend starting at 300 mg and working your way up until your symptoms are under control. 1200 is close to the max, although I think some folks go all the way up to 1800. I hope this is helpful. Good luck, Andy!
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer
Thanks Brandy for your quick reply. My PLMS is going nuts again...I'm not sure if it's the hernited disk which is making the right leg sciatic nerve messed up, or of it's the PLMS...or the combination of the two. I'm gonna give the tramadol one more try along with the neurontin, and I'll split the doses like you've done. I'll start with 600mg Neurontin twice, and 50mg Ultram twice. My doctor won't mind, since he knows that relieving my symptoms is gonna be a trial and error kind of thing. I hope you have a great day, and that any of us with pain and discomfort find peace and rest during our days and nights. ---Andy
Susan, thanks for the suggestion. I've been thinking along the same lines - that the Vicadin might just be part of my solution. At least it doesn't have any side effects like everything else has. I'll call my neurologist tomorrow. I have been waiting to call because I didn't want to try any new meds before Thursday because I'm giving a presentation at work to a couple hundred people. Many of these meds have left me unable to think clearly and concentrate like usual. Vicadin was sent from heaven because after the first night on it I woke up and could think clearly. It was like a whole new world to me. I sang in the car as I drove to work that first day! But after several weeks on it, I'm exhausted from the lack of sleep.
I keep wondering if I can add in a little Requip. Life was perfect when I was on it, but I augmented after 3 months.
At times I feel bad that this disease bothers me so much. I try to be grateful for the good things in my life (family, dogs, job, vacations) and that I don't have cancer or heart disease and I can see and hear. But the lack of sleep is insidious. It drives me crazy! My husband tries to be understanding, but he can't help but think I'm just lazy most of the time. After work, I'm just too exhausted to do much of anything around the house. I also developed plantar fascitis this summer which is a horrible heal pain when I walk. I used to walk for exercise, but now it hurts too much. Nothing seems to be helping with that either.
I'm sorry for rambling. I just want to be me again.
That probably sounds stupid to other people, but I bet many of you can relate to that.
I keep wondering if I can add in a little Requip. Life was perfect when I was on it, but I augmented after 3 months.
At times I feel bad that this disease bothers me so much. I try to be grateful for the good things in my life (family, dogs, job, vacations) and that I don't have cancer or heart disease and I can see and hear. But the lack of sleep is insidious. It drives me crazy! My husband tries to be understanding, but he can't help but think I'm just lazy most of the time. After work, I'm just too exhausted to do much of anything around the house. I also developed plantar fascitis this summer which is a horrible heal pain when I walk. I used to walk for exercise, but now it hurts too much. Nothing seems to be helping with that either.
I'm sorry for rambling. I just want to be me again.
That probably sounds stupid to other people, but I bet many of you can relate to that.Kwazylegs, I continue to try the neurontin as you may have noted in my previous posts. I am using it primarily for PLM. It has been generally effective but I am dealing with some side effects...perhaps manageable at this time. I am currently taking 900 mgs about 90 minutes before bedtime. The last day or two I have taken 300 about 30 minutes before the the 600 dose to try to reduce the side effects. I have also taken a vicodin (5/500) about an hour before beditme as someone suggested. I has helped with the PLM and perhaps with some uninterupped sleep which has been a challenge for me (insomnia) even when symptoms are controlled. I went to bed about two hours ago with relatively "quiet" legs but no sleep. Up for a bit and will try again later. Hope you have some luck and keep us posted as to how it goes for you.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.
-
SquirmingSusan
- Posts: 3028
- Joined: Sun Nov 12, 2006 4:08 am
- Location: Minnesota
- Contact:
D4 wrote:
At times I feel bad that this disease bothers me so much.
Oh, D4, don't feel bad about that! This is the most insidious condition. It affects everything. And since you can't SEE evidence of it, it's hard to get others to understand how much it messes up your life. Lack of sleep can literally make a person crazy. Don't they say that lack of sleep kills people faster than lack of water? Not to mention side effects from meds to treat the condition.
I'm just happy that the Vicodin works for you. I'm thrilled that it works for me as well as it does. Now, I just have to convince the doctors that they need to prescribe it for me. Those controlled substances sure must require a lot of extra paperwork or something.
I was feeling good last night, and decided to try a night without it. I woke up at 2am and those "snakes in the bones" were just going crazy. So, OK, I tried that; the Neurontin isn't enough. (I'm not sure the Neurontin is even necessary, but I'm giving it a good try.) The thing about the Vicodin I like is that I get NO side effects whatsoever, except for worse constipation than I usually have. I can't believe people get high on that stuff.
Good luck getting some sleep. There are good sleeping pills out there that can work for many. I've actually been able to use melatonin again for getting to sleep most nights, and only need the Lunesta if I'm really wide awake.
Susan
Neurontin vs Pregabalin
I have been taking Neurontin for about three months. I wanted to get off the dopamin3 agonists I was taking because they were causing augmentation. My doctor gave me a titration schedule for Neurontin. I started at 300 mg a day, and gradually increased, while decreasing my use of Mirapex. I got up to 2400 mg of Neurontin, but that wasn't enough to control my RLS symptoms; I was still taking 0.125 mg of Mirapex. I have stayed with that combo for a while because I was not feeling any augmentation on such a low dose of Mirapex. In fact, I decreased my Neurontin dose to 1800 mg a day, and the combo is still effective. BUT throughout I have experienced a side effect from the Neurontin which I really do not like. The drug makes me feel dizzy, not when lying down, but when I am standing up. The dizziness persists until mid-morning. If I try to get up early to go for my morning walk, I am unsteady on my feet. I may also have gained some weight on the drug. I was hoping that the side effects would dissipate, but they haven't yet. I heard that Pregabalin (Lyrica) has less side effects. Has anyone made the switch? And if I am going to make the switch, do I have to go off the Neurontin gradually? Final question, does anyone know the dose equuivalents Pregabalin vs Neurontin?
David
David- if you go to http://www.painclinic.org/aboutpain-medicationtypes.htm, and scroll all the way down to anticonvulsants, there's a conversion chart. I have to say that when I used this chart, I found the Lyrica dose to be a bit on the high side. I felt really stoned on this stuff! It gave me headaches so I went back to neurontin.
Josh
Mark,
Sorry for the late reply...I started composing one of my mini-novel replies yesterday at work, and my boss asked me to do a project for her. So in the meantime, my reply "vaporized" during the idle period. I'm sorry to hear that you're plagued by insomnia that is perhaps not related to RLS or PLMS, and so you have an additional problem to deal with. I share your insomnia problem, along with the RLS/PLMS, and am also trying to juggle medications that will give me the best "benefit-to-cost" ratio that I can find. Today I had the pain guy at the hospital stick the epidural needle into my lumbar spine where one of my herniated disks is, and so I have to put my trial with tramadol/Neurontin on hold for a week to see if the injection has any effect on my PLMS/RLS stuff. I'm still taking 1200 mg of Neurontin with .75 or 1.0 mg of clonazepam at night though, and in my 7 year experience with Neurontin for depression/anxiety, as well as RLS/PLMS and neuropathic pain in my legs and feet, I've discovered that for me I haven't gained weight because of the Neurontin. I'm also suspecting that my time of dosing the Neurontin has something to do with early morning awakenings...I think it's the 4-6 hour half life of the drug...If I take it in equal divided doses in the early evening and just before bed, I think that the clearance of this sedating drug from my body occurs around 2-3 am, and so I'm going to start taking the majority of the 1200 mg I take each evening/night closer to 11pm. If I stay asleep till 5 or 6am, then maybe I will have discovered one of the causes of my early waking. Just a thought. Maybe it'll work. I'll let you know how it goes. It seems that many here have widely varying responses to the medications prescribed for them, but I wouldn't let someone elses negative experiences with any medication stop me from giving it a try. The more I worry about (and I'm an expert in the worrying department) adverse effects of medications, it seems the more the adverse effects materialize...I guess it's a mind over body thing...everything's all tied together. I've read on some of these threads how those of us who are going through exceptionally difficult and stressful times in our lives have more difficulty with our RLS and PLMS and pain symptoms. I don't think it's a coincidence. I wish you and everybody here a peaceful and restful night tonight. ---Andy
Sorry for the late reply...I started composing one of my mini-novel replies yesterday at work, and my boss asked me to do a project for her. So in the meantime, my reply "vaporized" during the idle period. I'm sorry to hear that you're plagued by insomnia that is perhaps not related to RLS or PLMS, and so you have an additional problem to deal with. I share your insomnia problem, along with the RLS/PLMS, and am also trying to juggle medications that will give me the best "benefit-to-cost" ratio that I can find. Today I had the pain guy at the hospital stick the epidural needle into my lumbar spine where one of my herniated disks is, and so I have to put my trial with tramadol/Neurontin on hold for a week to see if the injection has any effect on my PLMS/RLS stuff. I'm still taking 1200 mg of Neurontin with .75 or 1.0 mg of clonazepam at night though, and in my 7 year experience with Neurontin for depression/anxiety, as well as RLS/PLMS and neuropathic pain in my legs and feet, I've discovered that for me I haven't gained weight because of the Neurontin. I'm also suspecting that my time of dosing the Neurontin has something to do with early morning awakenings...I think it's the 4-6 hour half life of the drug...If I take it in equal divided doses in the early evening and just before bed, I think that the clearance of this sedating drug from my body occurs around 2-3 am, and so I'm going to start taking the majority of the 1200 mg I take each evening/night closer to 11pm. If I stay asleep till 5 or 6am, then maybe I will have discovered one of the causes of my early waking. Just a thought. Maybe it'll work. I'll let you know how it goes. It seems that many here have widely varying responses to the medications prescribed for them, but I wouldn't let someone elses negative experiences with any medication stop me from giving it a try. The more I worry about (and I'm an expert in the worrying department) adverse effects of medications, it seems the more the adverse effects materialize...I guess it's a mind over body thing...everything's all tied together. I've read on some of these threads how those of us who are going through exceptionally difficult and stressful times in our lives have more difficulty with our RLS and PLMS and pain symptoms. I don't think it's a coincidence. I wish you and everybody here a peaceful and restful night tonight. ---Andy
Andy, Sorry about having to do the needle thing but hope it helps. Makes me somewhat grateful I have the insomnia and not the herniated discs. Think were having lots of similarities with the neurontin although you have had some success a lot longer. I think I may have to up the dosage a bit as I do not think the 900 is maintianing effectiveness. Got some 100 mgs so I can do it a bit slowly if needed. I also try to take it as close to 11 pm as possible for the same reasons. I tried the ultram for rls but after a short time it did not seem to help in that respect. Still pretty good for pain though. Have not tried it in combination with neurontin though so that is another idea. Let us know how it works for you when you are able to give it a try. Again, I do hope you get relief from the herniated discs.
David, 2400 mgs seems a lot---at least based on talking to the pharmacist. In any event, I'm glad you have had success and are keeping an eye out on the dizziness. I asked the pharmacist, in a general way, if he knew of others who had switched from neurontin to lyrica or are taking lyrica for rls/plm and he did not think so. He said most were taking the lyrica for diabetic neuropathy. However, think there were some comments related to this on one of the previous "Lyrica" threads.
David, 2400 mgs seems a lot---at least based on talking to the pharmacist. In any event, I'm glad you have had success and are keeping an eye out on the dizziness. I asked the pharmacist, in a general way, if he knew of others who had switched from neurontin to lyrica or are taking lyrica for rls/plm and he did not think so. He said most were taking the lyrica for diabetic neuropathy. However, think there were some comments related to this on one of the previous "Lyrica" threads.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.
Well, I share the insomnia thing with you two. Geeze--I take enough pills to kills a horse lately, and i just can't stay asleep! I have to force myself to stay in bed until 5 am, and most times don't succeed.
Andy, sorry about the shot. I have a herniated disc in my lumbar spine, as well--and it's starting to bother me since my back surgery on my thoracic spine. Yikes! I do not want any more surgery!!!! And, I hope I don't have to have the shot. Hear that's not pleasant at all.
Here's hoping we all start sleeping! That sure would make life, in general, more pleasant, wouldn't it?
Wishing you both peaceful sleep....
Jan
Andy, sorry about the shot. I have a herniated disc in my lumbar spine, as well--and it's starting to bother me since my back surgery on my thoracic spine. Yikes! I do not want any more surgery!!!! And, I hope I don't have to have the shot. Hear that's not pleasant at all.
Here's hoping we all start sleeping! That sure would make life, in general, more pleasant, wouldn't it?
Wishing you both peaceful sleep....
Jan
No one is alone who had friends.
David, I am today going off the neurotin 600mg 3x a day to Lyrica 75mg 2 xs a day. we are also splitting up the Requip to .5mg late afternoon and .5mg around 8 a night. I'll play with the timing. Keep watching and I'll let you know. Hope this isn't too late a response, but we just decided to do this yesterday...Pat
Switching to Lyrica
Pat, please do keep us posted. I have not done anything yet about my own situation. How were you doing on the combination of Neurontin and Requip? Had you been on Requip alone previously, and did you experience augmentation? By taking a small dose of Requip in combination, did that eliminate the augmentation? That appears to be my experience.
David
Jan,
This isn't one of my better weeks healthwise...first, I have the epidural thingy, and now I think I'm passing a stone (oh joys and raptures!). I've never had that problem before, so I guess I spend tomorrow in another medical facility. I can relate to your abundance of pills. At the hospital yesterday the nurse asked me what meds I was taking, and I drew a blank...for pete's sake, I've been taking so many meds intermittently for so many different reasons, that the next time I go to the doctor's office I'm gonna come prepared with a stack of flash cards with the names of all the meds on them. Then the nurse asks me why I'm taking them...hmmm, Neurontin for depression/anxiety/neuropathic pain/PLMS; clonazepam for RLS/panic/PLMS/sleep/whatever; Lunesta for sleep; and on and on it goes. Then she asks me if I'm allergic to anything...NSAIDS, penicillin, sulfa, cephalosporins(what the heck are they?), and shellfish. The good thing (if there is one) about the epidural is that you're on your belly and can't see a blessed thing that they're doing to you. The pain is minimal, and if you act really nervous, they might even give you some versed through an I.V. to relax you so you won't give a hoot even if you were able to see what's going on. I have to say, though that the numbness and much of the sciatic pain has gone away today, so maybe I'll be able to sleep a little better tonight (if I don't have a panic attack at the prospect of emptying my bladder again with the stone thingey). I'm sorry that your lumbar spine is now acting up...I was hoping for you that your thoracic spine surgery would have put an end to that pain. Well, I hope that we all have some restful sleep tonight. ---Andy
This isn't one of my better weeks healthwise...first, I have the epidural thingy, and now I think I'm passing a stone (oh joys and raptures!). I've never had that problem before, so I guess I spend tomorrow in another medical facility. I can relate to your abundance of pills. At the hospital yesterday the nurse asked me what meds I was taking, and I drew a blank...for pete's sake, I've been taking so many meds intermittently for so many different reasons, that the next time I go to the doctor's office I'm gonna come prepared with a stack of flash cards with the names of all the meds on them. Then the nurse asks me why I'm taking them...hmmm, Neurontin for depression/anxiety/neuropathic pain/PLMS; clonazepam for RLS/panic/PLMS/sleep/whatever; Lunesta for sleep; and on and on it goes. Then she asks me if I'm allergic to anything...NSAIDS, penicillin, sulfa, cephalosporins(what the heck are they?), and shellfish. The good thing (if there is one) about the epidural is that you're on your belly and can't see a blessed thing that they're doing to you. The pain is minimal, and if you act really nervous, they might even give you some versed through an I.V. to relax you so you won't give a hoot even if you were able to see what's going on. I have to say, though that the numbness and much of the sciatic pain has gone away today, so maybe I'll be able to sleep a little better tonight (if I don't have a panic attack at the prospect of emptying my bladder again with the stone thingey). I'm sorry that your lumbar spine is now acting up...I was hoping for you that your thoracic spine surgery would have put an end to that pain. Well, I hope that we all have some restful sleep tonight. ---Andy
Mark,
By the way, thanks for your well-wishes about the epidural. The effectiveness of Neurontin for the things that I've had it prescribed waxes and wanes (Ann, are you here?). Anybody have an idea where waxing and waning originated? I thought waxing was what I did to my car once each decade. I don't recall ever waning anything, though. Well, back to my reply...even though I've used Neurontin for different things for the past 7 or so years, its effectiveness varies...maybe it's my body responding to the med differently at different times. For me, Neurontin seems to consistently help me with sleep, some kinds of pain, and the PLMS. And even though sometimes it doesn't work as well as previously, if I give another try at some point, I find that its effectiveness is restored...I can't figure it out...it just works that way for me. Well, once again let's all keep good thoughts, and hopefully, we'll find rest tonight. ---Andy
By the way, thanks for your well-wishes about the epidural. The effectiveness of Neurontin for the things that I've had it prescribed waxes and wanes (Ann, are you here?). Anybody have an idea where waxing and waning originated? I thought waxing was what I did to my car once each decade. I don't recall ever waning anything, though. Well, back to my reply...even though I've used Neurontin for different things for the past 7 or so years, its effectiveness varies...maybe it's my body responding to the med differently at different times. For me, Neurontin seems to consistently help me with sleep, some kinds of pain, and the PLMS. And even though sometimes it doesn't work as well as previously, if I give another try at some point, I find that its effectiveness is restored...I can't figure it out...it just works that way for me. Well, once again let's all keep good thoughts, and hopefully, we'll find rest tonight. ---Andy