Just joined and seeking advice
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Re: Just joined and seeking advice
To add to Ann's answer, oxy lasts only 4 hours roughly, so no, it's not enough to get you through the night. If you are having symptoms 5-6 hrs after you take it, then you need a "booster" dose, maybe around midnight. But once the augmentation/withdrawal is over, you may not need that.
Beth - Wishing you a restful sleep tonight
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Re: Just joined and seeking advice
badnights wrote:To add to Ann's answer, oxy lasts only 4 hours roughly, so no, it's not enough to get you through the night. If you are having symptoms 5-6 hrs after you take it, then you need a "booster" dose, maybe around midnight. But once the augmentation/withdrawal is over, you may not need that.
Indeed - I found regular oxy lasted only about 3-4 hours, max. So, I would often wake up 2-3 hours after going to sleep, need to take another dose and walk while I waited for it to work. There are other opioids that last longer, but may be harder to get prescribed.
But, as Beth said, it doesn't matter if you only use it for a few weeks and then everything abates to a prior level, as you hopefully only need the extra for a short time.
Ann - Take what you need, leave the rest
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Managing Your RLS
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Re: Just joined and seeking advice
Thanks for the great advice. The last two nights I've taken 2 x 5 mg. The first night on that dose was good in that I wasn't up walking but I did wake up in the early morning with symptoms. After reading Beth's post, last night I took one tab at bedtime and then another one at 12:30 a.m. and I had no symptoms the rest of the night. I slept through to morning. I was a little bit more groggy in the morning but I can live with that if I'm not having symptoms and sleeping as well. This will be my new strategy. Yeah! Thanks for helping me get through this.
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Re: Just joined and seeking advice
Good news!
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.
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Re: Just joined and seeking advice
Great stuff! Hopefully the grogginess will go away over time.
Beth - Wishing you a restful sleep tonight
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Re: Just joined and seeking advice
Hello,
I've been following the suggestions for taking the oxy and it has worked well now for several nights as mentioned in my previous post. Unfortunately, the last three nights have not been good. I take one 5 mg oxy at bedtime, then take another 5 mg a few hours later but now I'm waking up between 3-6 times a night with symptoms and have to get up and walk around so I can go back to sleep. Two nights ago, I woke up every hour between 11:30 and 4:30 a.m. Last night, it was five times.
It's been 19 days now without Mirapex or Lyrica. Are these bad nights from the Mirapex or Lyrica still working their way out of my system? Is it typical to have the roller coaster of good nights/bad nights? I also wonder if I need to take more oxy or maybe it's not working.
Any insight would be appreciated.
I've been following the suggestions for taking the oxy and it has worked well now for several nights as mentioned in my previous post. Unfortunately, the last three nights have not been good. I take one 5 mg oxy at bedtime, then take another 5 mg a few hours later but now I'm waking up between 3-6 times a night with symptoms and have to get up and walk around so I can go back to sleep. Two nights ago, I woke up every hour between 11:30 and 4:30 a.m. Last night, it was five times.
It's been 19 days now without Mirapex or Lyrica. Are these bad nights from the Mirapex or Lyrica still working their way out of my system? Is it typical to have the roller coaster of good nights/bad nights? I also wonder if I need to take more oxy or maybe it's not working.
Any insight would be appreciated.
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Re: Just joined and seeking advice
Your brain has to adapt to being without these drugs and their effects. It can take several weeks or even a month or so.
That said, I don't know how you can tell the difference. Given your level of symptoms, it seems like the 10 mg of oxy just isn't enough, either because your WED is just more severe OR because your brain is still adjusting - either way, you seem to need more. The Clinical Management of Restless Legs Syndrome book suggests regular oxy be prescribed at 2.5 to 10 mg every 4-8 hours. It doesn't provide a max daily amount - I'd think that your 10 mg total could be increased without issue, but definitely speak to your doctor to make sure.
That said, I don't know how you can tell the difference. Given your level of symptoms, it seems like the 10 mg of oxy just isn't enough, either because your WED is just more severe OR because your brain is still adjusting - either way, you seem to need more. The Clinical Management of Restless Legs Syndrome book suggests regular oxy be prescribed at 2.5 to 10 mg every 4-8 hours. It doesn't provide a max daily amount - I'd think that your 10 mg total could be increased without issue, but definitely speak to your doctor to make sure.
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.
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Re: Just joined and seeking advice
I agree with Ann, I would contact your doctor and describe what's happening. Definitely a roller-coaster of bad and good is typical, and appears to have very little rhyme or reason to its pattern. After 19 days during which you've already had a number of good nights, then getting bad again, I would think the main problem is probably not withdrawal but something else is going on; perhaps even just general worsening. The 10 mg is not sufficient. Ask your doctor what your options are.
Beth - Wishing you a restful sleep tonight
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Re: Just joined and seeking advice
Well, I spoke too soon. As I mentioned earlier, the first three nights on Horizant were good but the last four nights have been bad. It's almost as if I took nothing--symptoms as soon as I went to bed, feeling wide awake, and symptoms throughout the night. I've had to take my oxy to get through it. Very disappointing. I know some people take 1200 mg but I can't see doing that when a) the 600 mg worked so poorly; b) the 600 mg made me groggy even after one week; and c) the expense of 1200 mg. Am I judging this too quickly?
I'm wondering if now I should go back to the Lyrica and try a stronger dose than I had tried before although if Horizant doesn't work will another anti-convulsant likely work? I'm feeling very confused and not sure what to do and as I mentioned above, my doc doesn't provide much direction even though she's open to my ideas.
Thanks
I'm wondering if now I should go back to the Lyrica and try a stronger dose than I had tried before although if Horizant doesn't work will another anti-convulsant likely work? I'm feeling very confused and not sure what to do and as I mentioned above, my doc doesn't provide much direction even though she's open to my ideas.
Thanks
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Re: Just joined and seeking advice
I honestly am not sure what to say. A few of us have noted that this family of drugs (all gaba related) work initially and then seem to stop. But, there is no clinical data for that as far as I know - just some of us who've said this.
Horizant can take 2-3 weeks to completely adjust to. That grogginess may last that long. You can't really know if it will make you groggy over time unless you give it at least 3 weeks. According to Dr Buchfuhrer, some of his patients need 1800 mg, so he'd have you increase it and try it. He had me try it all 600, then 1200, then 1800. He did give me samples, however, so I didn't pay for it!
If your insurance doesn't cover it, however, that makes it a difficult sell - if you can't afford it, you can't afford it!
While all in the same family, they do work differently enough that I think it's fair to say that it's helpful to try a different one even if another did not help. If nothing else, the side effects can be different enough that it's worth doing.
Horizant can take 2-3 weeks to completely adjust to. That grogginess may last that long. You can't really know if it will make you groggy over time unless you give it at least 3 weeks. According to Dr Buchfuhrer, some of his patients need 1800 mg, so he'd have you increase it and try it. He had me try it all 600, then 1200, then 1800. He did give me samples, however, so I didn't pay for it!
If your insurance doesn't cover it, however, that makes it a difficult sell - if you can't afford it, you can't afford it!
While all in the same family, they do work differently enough that I think it's fair to say that it's helpful to try a different one even if another did not help. If nothing else, the side effects can be different enough that it's worth doing.
Ann - Take what you need, leave the rest
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Re: Just joined and seeking advice
I agree, you should keep on the Horizant for 3 weeks, getting your doctor to approve an increase in dose, to see if at any point it covers off the symptoms, and to see if there are lingering side effects.
I suspect you will be dissatisfied with the results, and will have to move on to long-term opioid therapy, or a combination of opoid and anticonvulsant (or perhaps a DA even though you augmented before. You would have to keep the DA dose low, and you still might augment again).
But there is no way to know for sure, and definitely no other way to convince a doctor, than to give it this 3-week experiment. Be sure your doctor knows what's happening, and has a plan for what to try after the 3 weeks are over. Let her (him) know the two key points, that the drug is not currently effective, and it is causing daytime grogginess. And the third point, that you'll give it 3 weeks then depending on the results, you may need to try something else.
If the Horizant helps at all at the end of 3 weeks, but is not enough, your doctor might consider lowering its dose and adding hydromorph contin or some other long-acting opioid. If it doesn't seem to be helping at all, or if it's causing mood imbalances, she/he might consider the same opioid with a DA, maybe the rotigotine patch. If he's really hesitant, he can probably contact Dr B and ask for advice!
I suspect you will be dissatisfied with the results, and will have to move on to long-term opioid therapy, or a combination of opoid and anticonvulsant (or perhaps a DA even though you augmented before. You would have to keep the DA dose low, and you still might augment again).
But there is no way to know for sure, and definitely no other way to convince a doctor, than to give it this 3-week experiment. Be sure your doctor knows what's happening, and has a plan for what to try after the 3 weeks are over. Let her (him) know the two key points, that the drug is not currently effective, and it is causing daytime grogginess. And the third point, that you'll give it 3 weeks then depending on the results, you may need to try something else.
If the Horizant helps at all at the end of 3 weeks, but is not enough, your doctor might consider lowering its dose and adding hydromorph contin or some other long-acting opioid. If it doesn't seem to be helping at all, or if it's causing mood imbalances, she/he might consider the same opioid with a DA, maybe the rotigotine patch. If he's really hesitant, he can probably contact Dr B and ask for advice!
Beth - Wishing you a restful sleep tonight
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Re: Just joined and seeking advice
Hi! While I am new to this forum, I am definitely not "new" to WED/RLS. I have suffered with it since around 1982, and the first doctor I saw called it "busy legs" and prescribed Quinamm (quinine). I could have gotten as much relief by drinking tonic water! Since then I have been on everything possible, from anti-seizure meds, dopamine agents, anti-epileptics, meds for Parkinsons, Mirapex, Lyrica, Requip, and opiates. At times, I've been on coctails of several meds at once. Most worked for a while, but either stopped working or caused severe augmentation. I have had iron infusions due to low ferritin levels and those were the most helpful...for a few months. I am now on vitamin & mineral supplements, iron tabs, oxycodone (20 mg) and methadone (15 mg). I still have trouble sleeping. Most nights I'm up until 3:00 - 4:00 AM, then I can't get up until 10:00 or 11:00. I also have symptoms pretty much 24/7, but not as severe as before, although some days/nights are brutal! Last month, after about 48 hours with no sleep at all, I finally passed out, but soon woke up unable to move my left leg without pain. My son said I kicked so hard, had I been playing soccer, I could have scored from the far side of the field! Turns out I nearly tore some ligaments around my knee. Things like that make me just want to give up, but I'm going to be a grandma in October, so I'll just have to keep fighting.
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Re: Just joined and seeking advice
I'm in a similar boat, YCantISleep.
There is new research that shows that too much glutamate in our brains may be behind the "awake all night" issue. Last night I was lucky and was in bed by 3 AM instead of 6 AM, lol. But, I had breakthrough and had to get up and didn't sleep until after 6 AM. Can't win some nights . Hopefully they will soon have some research about how to resolve the glutamate issue. Amino acids are helping some with that, it seems.
Glad to have you here - and congrats on the upcoming grandchild!
There is new research that shows that too much glutamate in our brains may be behind the "awake all night" issue. Last night I was lucky and was in bed by 3 AM instead of 6 AM, lol. But, I had breakthrough and had to get up and didn't sleep until after 6 AM. Can't win some nights . Hopefully they will soon have some research about how to resolve the glutamate issue. Amino acids are helping some with that, it seems.
Glad to have you here - and congrats on the upcoming grandchild!
Ann - Take what you need, leave the rest
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Re: Just joined and seeking advice
Welcome - YcantIsleep - Your post is so familiar... I haven't been on as many medications as you have. And I also have symptoms 24/7 but would appear to be getting somewhat more relief from medication than yourself.
However.... when it comes to sleep..... I'm right in the same boat. Usually find sleep around 4am and then circumstances permitting, might sleep until around 9 or 10am. No WED/RLS, medication has taken care of that, it is insomnia from whatever cause ??
You can't give up ?? A little grandchild in October, then you will also have a whole new focus when it comes to Christmas shopping.
Actually, every time you go out you will be drawn to baby stuff
However.... when it comes to sleep..... I'm right in the same boat. Usually find sleep around 4am and then circumstances permitting, might sleep until around 9 or 10am. No WED/RLS, medication has taken care of that, it is insomnia from whatever cause ??
You can't give up ?? A little grandchild in October, then you will also have a whole new focus when it comes to Christmas shopping.
Actually, every time you go out you will be drawn to baby stuff
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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https://www.mayoclinicproceedings.org/a ... 0/fulltext
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Re: Just joined and seeking advice
Wow, sounds like my story, except I haven't gotten the iron infusions yet. It's the sleep schedule that is most distressing now that the symptoms are sort fo under control. I have low-grade symptoms all day long, but as long as I don't sit for more than 1/2 hour, I'm usually OK. I have a desk at work that raises, and I stand up leaning on the counter at home to read (not ergonomic, I'm sure). But the sleep schedule is a perpetual struggle, and I have begun to accept that I would be better off not fighting it so much.
If I just let my body go, my sleep time would get later every day. But I have to keep some sort of normalcy about my day, in order to interact with the world. I go to bed 2-3 AM, sleep til 9:30 AM (not enough - I wake up too much, and even if I didn't it's still only 6-7 hrs), work 11 AM - 6PM (special accommodation process for that just started), and make up for the drain on the weekends. That means I get up at noon or 2 PM on weekends, this time of year is particularly hard, it's spring here and the snow is melting, the sky is bright and sunny, and I get up when it's half over. It makes me sad sometimes, and I have to fight that.
The best thing, I think, is to accept it as much as you can, and make the schedule work for you. If your body is going to let you sleep in the middle of the morning, then sleep in the morning. If you live with ohter people, make sure they all know that your sleep is your medicine, your life, and no one is to interupt it, ever (unless the house is burning).
If I just let my body go, my sleep time would get later every day. But I have to keep some sort of normalcy about my day, in order to interact with the world. I go to bed 2-3 AM, sleep til 9:30 AM (not enough - I wake up too much, and even if I didn't it's still only 6-7 hrs), work 11 AM - 6PM (special accommodation process for that just started), and make up for the drain on the weekends. That means I get up at noon or 2 PM on weekends, this time of year is particularly hard, it's spring here and the snow is melting, the sky is bright and sunny, and I get up when it's half over. It makes me sad sometimes, and I have to fight that.
The best thing, I think, is to accept it as much as you can, and make the schedule work for you. If your body is going to let you sleep in the middle of the morning, then sleep in the morning. If you live with ohter people, make sure they all know that your sleep is your medicine, your life, and no one is to interupt it, ever (unless the house is burning).
Beth - Wishing you a restful sleep tonight
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