I'm 32 years old and healthy in pretty much every other way (other than occasional migraines). For the last 6 months or so I've been running like 12-15 miles a week. I'm in grad school finishing a phd.
I've never really had insomnia issues. Maybe occasionally in the past few years when I would have a hard time falling asleep (usually stress related), I'd feel like I had to move my legs and that I couldn't get comfortable. Otherwise, I've been happily sleeping 8-9 hours a night for years.
Then this past year I started having RLS symptoms on airplanes. On a long flight to europe, my legs ached and ached and I couldn't get comfortable. Then, this past summer, it started happening a couple times a week where I couldn't sleep b/c my legs would ache (like an internal tugging/pulling/drawing). I went to my doctor and she ruled out iron and thyroid issues and said I was otherwise totally healthy. She put me on Carbidopa and Levodopa.
That worked at first but I ended up having to take it EVERY night. And then this past week it stopped working.
I've been up all night-- feeling like someone was torturing me. I've never felt so terrible. I'd end up crying on the couch trying to watch TV in the middle of the night b/c my legs (and even elbows) ached/throbbed terribly.
So my nurse practitioner put me on Requip 25mg to go up to 50mg if I need it. I've taken it for a few nights, and honestly haven't noticed much difference. Eventually I can fall asleep around 3:30am. I tried taking it earlier last night-- 2 hours before bed-- and I was able to fall asleep, and then I woke up again feeling terrible 2 hours later. And in the morning I felt fuzzy and dopey.
I probably shouldn't have, but last night out of desperation I took my roommate's clornazapan (sp?) that she takes to sleep. It knocked me out pretty effectively and I got like 7 hours of sleep!! This morning I do feel dopey and headachey, but at least I'm not crying from lack of sleep!
I'm at my wits end. I'm not used to being sleep deprived. I should be at school writing every day but instead I spend my mornings just trying to wake up. My productivity this week has been awful, and I can't afford that. I also run for stress relief, and when I've tired, I don't have the energy to run, so I'm winding up more stressed out and frazzled then I'm used to.
Sorry to write so much-- I'm just at my wits end with this. And on top of it all, in 5 days I leave for a road trip to my sister's wedding, so I can't really see my doctor again or do anything else about it until I get back!
very new to RLS and it's going to drive me insane!
Please follow the link in my signature to the Mayo Clinic Algorithm for RLS.
This is the single most important document you can provide to your physician/NP/whomever. Benzo's are used for a good many cases of RLS so that's why you had the good experience with the clonazepam.
However, Requip/Mirapex are the typical front line drugs that are tried for RLS. Levodopa should not have been given, as the Mayo clearly points out, it has a horrible rate of augmentation (worsening of RLS symptoms) and has likely made you much more miserable.
You should go over the algorithm with your health provider and make a plan with them, so you both know what's going on and what to do next if a medication is not working. If your physician scoffs at the Algorithm - walk out. Find another one ASAP who will actually listen.
This is your quality of life. You need to find time to see your physician if possible BEFORE you leave. RLS is horrendous torture for people on road trips, many here have personal experience with it, leaving their meds at home when out of state, etc.. It's not fun. Explain about your road trip and see if you can at least get a prescription for Ultram (tramadol) for your trip duration - point out its not a controlled Substance (unless you're in Kentucky) It's also recommend in the Algorithm
This is the single most important document you can provide to your physician/NP/whomever. Benzo's are used for a good many cases of RLS so that's why you had the good experience with the clonazepam.
However, Requip/Mirapex are the typical front line drugs that are tried for RLS. Levodopa should not have been given, as the Mayo clearly points out, it has a horrible rate of augmentation (worsening of RLS symptoms) and has likely made you much more miserable.
You should go over the algorithm with your health provider and make a plan with them, so you both know what's going on and what to do next if a medication is not working. If your physician scoffs at the Algorithm - walk out. Find another one ASAP who will actually listen.
This is your quality of life. You need to find time to see your physician if possible BEFORE you leave. RLS is horrendous torture for people on road trips, many here have personal experience with it, leaving their meds at home when out of state, etc.. It's not fun. Explain about your road trip and see if you can at least get a prescription for Ultram (tramadol) for your trip duration - point out its not a controlled Substance (unless you're in Kentucky) It's also recommend in the Algorithm
thanks, Zach-- I'm going to print out the algorithm thing and give it a read. I love my NP but when I saw her a couple months for this, she really didn't seem to have much experience treating it. If necessary, I'll find someone else.
I hadn't thought about the roadtrip being torture. Part of me thinks it won't be because my RLS doesn't bother me when I'm sitting up in the evening watching TV and hanging out. It's the worst about 20 minute after I get into bed-- when I start to relax to fall asleep. I think that's why it also bugged me on the long flight-- b/c I was trying to fall asleep. So hopefully, that won't be an issue on the road, since we're not planning on sleeping. And my partner and I are sharing the driving.
I'll call my NP and try to move my appointment with her up-- it's scheduled for the end of Oct right now. I don't want to "self medicate" by taking the clonazepam, but it's good to know that's why it worked. And I had no idea the levadopa would make things worse! So augmentation is when a drug makes symptoms worse?
I can move up to a higher does of the requip on Friday. Should I keep taking it and take it with the clorazepam? Or one and not the other?
so confusing. I guess I need to really educate myself about this!
I hadn't thought about the roadtrip being torture. Part of me thinks it won't be because my RLS doesn't bother me when I'm sitting up in the evening watching TV and hanging out. It's the worst about 20 minute after I get into bed-- when I start to relax to fall asleep. I think that's why it also bugged me on the long flight-- b/c I was trying to fall asleep. So hopefully, that won't be an issue on the road, since we're not planning on sleeping. And my partner and I are sharing the driving.
I'll call my NP and try to move my appointment with her up-- it's scheduled for the end of Oct right now. I don't want to "self medicate" by taking the clonazepam, but it's good to know that's why it worked. And I had no idea the levadopa would make things worse! So augmentation is when a drug makes symptoms worse?
I can move up to a higher does of the requip on Friday. Should I keep taking it and take it with the clorazepam? Or one and not the other?
so confusing. I guess I need to really educate myself about this!
re: self medication.. I'm probably not the best person to give advice on that, because I am a recovering addict. However I would save don't do it unless you have no choice left.
You don't want to be taking benzos if you can help it, as if you take them for a week straight you could end up going through withdrawal if you try to stop.. We've had some real nasty experiences here from people getting off Clonazepam in particular. Benzo withdrawal is not fun, and can be life threatening if it turns into a long standing habbit and then you try to quit cold turkey.
This is why it is so important to get in to see your doctor. Or at least leave an urgent message that you are going on a road trip and are willing to keep trying the Requip for a week or w/e, but you need something for backup incase it isn't working.. Ultram is a good medication for this, as opiates help RLS 99.9% of the time, except for the rare 0.1% of people who say they don't respond. Just let them know you have the Mayo Algorithm (and make sure they understand its from The Mayo Clinic, and if they don't know what THAT is, then you likely should find a new physician to see at some point) and you can bring it to the office and they can see for themselves about the medications listed in it.
It's a tricky subject to deal with, but its worth at least trying. If you don't try you are guaranteed failure, but if you try at least there is a small chance of success.
Also, yes, Augmentation is defined as a side effect to dopaminergic drugs in where instead of relieving symptoms, they either cause them come back earlier than before as well as more intensely, or can also cause an immediate worsening of symptoms at the same time.
I augmented severely from Levodopa. I could blow through 30 pills in less than a week, trying to keep the augmentation at bay. It's ALWAYS a losing battle.
You don't want to be taking benzos if you can help it, as if you take them for a week straight you could end up going through withdrawal if you try to stop.. We've had some real nasty experiences here from people getting off Clonazepam in particular. Benzo withdrawal is not fun, and can be life threatening if it turns into a long standing habbit and then you try to quit cold turkey.
This is why it is so important to get in to see your doctor. Or at least leave an urgent message that you are going on a road trip and are willing to keep trying the Requip for a week or w/e, but you need something for backup incase it isn't working.. Ultram is a good medication for this, as opiates help RLS 99.9% of the time, except for the rare 0.1% of people who say they don't respond. Just let them know you have the Mayo Algorithm (and make sure they understand its from The Mayo Clinic, and if they don't know what THAT is, then you likely should find a new physician to see at some point) and you can bring it to the office and they can see for themselves about the medications listed in it.
It's a tricky subject to deal with, but its worth at least trying. If you don't try you are guaranteed failure, but if you try at least there is a small chance of success.
Also, yes, Augmentation is defined as a side effect to dopaminergic drugs in where instead of relieving symptoms, they either cause them come back earlier than before as well as more intensely, or can also cause an immediate worsening of symptoms at the same time.
I augmented severely from Levodopa. I could blow through 30 pills in less than a week, trying to keep the augmentation at bay. It's ALWAYS a losing battle.
I just noticed you're in Wisconsin too, Zach! I'm in Madison!
Thanks so much for the advice. I definitely don't want to get hooked on taking a benzo if I can avoid it (I have a couple friends who take it to help them sleep-- I wonder if they know they can be hooked!)
I'll call my NP this afternoon and explain everything to her. Hopefully I can get Ultram as a back up.
thanks again-- it's good to know I'm not the only one suffering from this!
Thanks so much for the advice. I definitely don't want to get hooked on taking a benzo if I can avoid it (I have a couple friends who take it to help them sleep-- I wonder if they know they can be hooked!)
I'll call my NP this afternoon and explain everything to her. Hopefully I can get Ultram as a back up.
thanks again-- it's good to know I'm not the only one suffering from this!
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ViewsAskew
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That's too funny - I LOVE Madison! The farmer's market alone could keep me happy, but I also love the quickly college town feel to it.
One thing that I don't recall reading in this exchange is getting your ferritin tested. It's different than being anemic. Very important to get that test. If it's under 50 (some doctors would say if it's under 100), then taking iron is recommended.
Many of us are at 8, 10, 16, etc. That's just on the border of being low according to the test parameters, but for RLS patients, it's very, very low. Taking iron can provide improvement for up to 60% of us.
BUT! Never take iron without getting the ferritin test. You can have too much iron and still have RLS. Taking more can lead to nasty problems if it's already high.
One thing that I don't recall reading in this exchange is getting your ferritin tested. It's different than being anemic. Very important to get that test. If it's under 50 (some doctors would say if it's under 100), then taking iron is recommended.
Many of us are at 8, 10, 16, etc. That's just on the border of being low according to the test parameters, but for RLS patients, it's very, very low. Taking iron can provide improvement for up to 60% of us.
BUT! Never take iron without getting the ferritin test. You can have too much iron and still have RLS. Taking more can lead to nasty problems if it's already high.
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.
I know I had a bunch of blood tests (iron and others) back in July. I'll have to check and see if ferritin was one of them.
I talked to a nurse this afternoon at my doctor's and she was basically like "double your requip and give it a week to work" before they think about other drugs. Okay... I guess that seems reasonable, since I started on the very low dose of .25mg.
Then I mentioned to her whether I should try one of my roommate's clonazepam to help me sleep (I didn't tell her I tried one already) and she was like "NO absolutely not." And I can totally understand that. So I won't take another one. It made me feel pretty crappy today anyway. I'll try going up to .50 requip tonight, and take it a couple hours before bed. If that doesn't work, then I'll just try to get some writing done at 2am!!
thanks again-- and nice to see so many Wisconsinites here! I'm actually originally from Maine but Madison is treating me well so far!
I talked to a nurse this afternoon at my doctor's and she was basically like "double your requip and give it a week to work" before they think about other drugs. Okay... I guess that seems reasonable, since I started on the very low dose of .25mg.
Then I mentioned to her whether I should try one of my roommate's clonazepam to help me sleep (I didn't tell her I tried one already) and she was like "NO absolutely not." And I can totally understand that. So I won't take another one. It made me feel pretty crappy today anyway. I'll try going up to .50 requip tonight, and take it a couple hours before bed. If that doesn't work, then I'll just try to get some writing done at 2am!!
thanks again-- and nice to see so many Wisconsinites here! I'm actually originally from Maine but Madison is treating me well so far!
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ViewsAskew
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Unless it's changed recently, the average dose of Requip is about 1.25 or 1.5 mg, so at .25, you have a lot of leeway to continue moving up. it very well could be that you just need a bit more.
Try .5 for awhile as she said. If, in a week, you have no improvement, call her again. I can't imagine that they won't move you to .75.
Try .5 for awhile as she said. If, in a week, you have no improvement, call her again. I can't imagine that they won't move you to .75.
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.
well, some good news!
I went up to .50mg requip last night and I slept ALL THROUGH THE NIGHT and never woke feeling like someone was torturing me. That's the first time in WEEKS so I feel fantastic about it.
I'm going to stick with that dose for now, and touch base with my doctor when I get back from my trip next week.
thanks everyone!
I went up to .50mg requip last night and I slept ALL THROUGH THE NIGHT and never woke feeling like someone was torturing me. That's the first time in WEEKS so I feel fantastic about it.
I'm going to stick with that dose for now, and touch base with my doctor when I get back from my trip next week.
thanks everyone!
I meant to warn you..
NEVER - EVER mention trying or askin if its OK to take a controlled substance that is not prescribed to you. They will immediately flag you as suspicion of drug seeking in most cases, or outright label you one. If you are with a doctor you have known for a while, and think you can trust, or seems to be not uptight about such things, then it is safe to at least discuss it if it legitimately comes up. But otherwise, its best to keep your mouth shut, unfortunately.
Also.. Did the nurse say all this without talking to the doctor? If so I would have gotten real pissy with them. I've had issues with receptionists trying to "deal with me" in the past and he always said that's hogwash come to him directly.. Granted a nurse is different, I've often dealt with nurses but generally they at least speak to the doctor about the issue first.
However, glad that the Requip seems to be helping now. Just stay with it, and don't increase unless absolutely necesarry, so you get the most out of it.
NEVER - EVER mention trying or askin if its OK to take a controlled substance that is not prescribed to you. They will immediately flag you as suspicion of drug seeking in most cases, or outright label you one. If you are with a doctor you have known for a while, and think you can trust, or seems to be not uptight about such things, then it is safe to at least discuss it if it legitimately comes up. But otherwise, its best to keep your mouth shut, unfortunately.
Also.. Did the nurse say all this without talking to the doctor? If so I would have gotten real pissy with them. I've had issues with receptionists trying to "deal with me" in the past and he always said that's hogwash come to him directly.. Granted a nurse is different, I've often dealt with nurses but generally they at least speak to the doctor about the issue first.
However, glad that the Requip seems to be helping now. Just stay with it, and don't increase unless absolutely necesarry, so you get the most out of it.