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Default Jan 30, 2020 at 04:25 PM
  #1
ok, I am going nuts here. I'm 99% sure I have Restless Leg Syndrome (RLS) because of my nonstop pacing and feeling restless in my legs. I don't think I have akathisia because this is not an entire body thing, but I put akathisia in the title because the two conditions are similar enough.

What treatments have you tried for akathisia or RLS? How did they work out for you? I'm trying to do some research. Thanks!
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Default Jan 30, 2020 at 04:39 PM
  #2
Is this worse when lying in bed at night and trying to sleep? Do any of your limbs jerk uncontrollably at times without your consent?

RLS has a circadian pattern to it, occurs exclusively in the lower extremities, and often has a sensory (burning, itching, stinging, etc.) component to it.

Akathesia is the overwhelming urge to move some or all the body without a sensory component, circadian pattern, or exclusivity to the legs.

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Default Jan 30, 2020 at 04:43 PM
  #3
No, it's not worse at night. I'd say it's consistently bad throughout the day, but maybe a little worse in the mornings when I first wake up.

I don't have any limb jerking, fortunately. I just have this really restless feeling in my legs and nothing else. But it's bad to the point I'm pacing all day and the urge to pace never abates no matter what I do.

So do you think this is more of RLS or more of akathisia?
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Default Jan 30, 2020 at 05:36 PM
  #4
Hi bluebicycle. I'm not sure if I ever had RLS, but I've had some doozy periods of akathisia during the years of bipolar treatment. I never recall any jerking movements, and the very worst of my akathisia was more psychological torture more than anything specific to my legs. No itching or burning, that I recall. I do remember in early periods of akathisia wanting to walk around a lot, but at its worst, I actually spent more time in bed rocking from my hip area the most. It would become so torturous that I would even scream, at times. It was horrible! Horrible!

I have taken 40 mg of propranolol for several years (for tachycardia), including the years I suffered most from akathisia. Some say that propranolol can be helpful. If it was helpful, then what would it have been like for me withOUT the propranolol!?!? I was initially also prescribed Cogentin (benztropine) for the akathisia. Cogentin was helpful, but I had to go off of it because it gave me severe constipation. I'm the only person I know who has had that side effect from that medication, so many other people benefit from it greatly. What I ended up using was not ideal. My psychiatrist told me to take Ativan (a benzo). Ativan did help, but it only helped for fewer than 24 hours. I had to take more of it, and more frequently to keep the akathisia at bay. Very often I would wake up in the morning and the akathisia would start torturing me again. I'd take Ativan, but had to wait a good 30 minutes for it to kick in. Eventually, I was weaned off Geodon (that caused it). That was hell, because Geodon withdrawal is not easy! I was taking the Ativan the whole time. Then when I finally got off Geodon, I had to slowly be weaned off Ativan. Another struggle!

I have taken a mini dose of Klonopin for about 11 years now, after taking 2 mg prior to that. Obviously, that dose did nothing to prevent my akathisia. My psychiatrist didn't want to up my Klonopin. I didn't want more. I hate Klonopin! I could live with Ativan. I'm in Klonopin "jail" and perhaps always will be.

I think that there are other helpful medications for akathisia or RLS, not mentioned above. Do talk about this with your doctor.
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Default Jan 30, 2020 at 06:27 PM
  #5
I had akathisia from Latuda, Zyprexa, Geodon, and Haldol. Latuda was first, and I didn't know what akathisia was at the time so I just reported severe anxiety to my pdoc and he added Ativan, which did help a little bit but the relief didn't last very long. On Geodon I just stopped it because it didn't help with my psychosis anyways. When I had it again on Zyprexa I tried propanolol which did help after about 4 days. For when I had it with haldol we added Cogentin which did help and I still take because I have twitching on Risperdal and it works pretty well.
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Default Jan 30, 2020 at 06:42 PM
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@BirdDancer: Thank you for your insightful reply! I will read more about Cogentin in the event that my pdoc suggests it. Propranolol sounds like a decent option as well, considering a lot of people on this forum have taken it (or are currently on it) for anxiety and don't really have any negative side effects. Of course, this is assuming propranolol works well for akathisia/RLS.

@spikes: Thanks. Good to know that Cogentin is helping you. I'm glad you've found something that works! I'm not a fan of benzos for a variety of reasons, including the fact they're generally short acting, so I think benzos would be my last resort.
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Default Jan 31, 2020 at 12:42 PM
  #7
Just an update: My pdoc isn't giving me the chance to discuss anything with him. His assistant said I will need to take propranolol 2x a day as needed for restlessness. So I guess I'm taking it whether I like it or not...

I did some research and would have preferred cogentin, to be honest.
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Default Jan 31, 2020 at 01:05 PM
  #8
Here's hoping the propranolol works well for you! And if it doesn't, well, you can always call back. I'm sorry you didn't get a chance to discuss it like you wanted, but at least something is being done about that terrible akathisia/RLS!
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Default Jan 31, 2020 at 02:13 PM
  #9
Quote:
Originally Posted by BirdDancer View Post
Hi bluebicycle. I'm not sure if I ever had RLS, but I've had some doozy periods of akathisia during the years of bipolar treatment. I never recall any jerking movements, and the very worst of my akathisia was more psychological torture more than anything specific to my legs. No itching or burning, that I recall. I do remember in early periods of akathisia wanting to walk around a lot, but at its worst, I actually spent more time in bed rocking from my hip area the most. It would become so torturous that I would even scream, at times. It was horrible! Horrible!

I have taken 40 mg of propranolol for several years (for tachycardia), including the years I suffered most from akathisia. Some say that propranolol can be helpful. If it was helpful, then what would it have been like for me withOUT the propranolol!?!? I was initially also prescribed Cogentin (benztropine) for the akathisia. Cogentin was helpful, but I had to go off of it because it gave me severe constipation. I'm the only person I know who has had that side effect from that medication, so many other people benefit from it greatly. What I ended up using was not ideal. My psychiatrist told me to take Ativan (a benzo). Ativan did help, but it only helped for fewer than 24 hours. I had to take more of it, and more frequently to keep the akathisia at bay. Very often I would wake up in the morning and the akathisia would start torturing me again. I'd take Ativan, but had to wait a good 30 minutes for it to kick in. Eventually, I was weaned off Geodon (that caused it). That was hell, because Geodon withdrawal is not easy! I was taking the Ativan the whole time. Then when I finally got off Geodon, I had to slowly be weaned off Ativan. Another struggle!

I have taken a mini dose of Klonopin for about 11 years now, after taking 2 mg prior to that. Obviously, that dose did nothing to prevent my akathisia. My psychiatrist didn't want to up my Klonopin. I didn't want more. I hate Klonopin! I could live with Ativan. I'm in Klonopin "jail" and perhaps always will be.

I think that there are other helpful medications for akathisia or RLS, not mentioned above. Do talk about this with your doctor.
Klonopin is absolute utter anguish for me.

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Default Jan 31, 2020 at 04:14 PM
  #10
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Originally Posted by bluebicycle View Post
Just an update: My pdoc isn't giving me the chance to discuss anything with him. His assistant said I will need to take propranolol 2x a day as needed for restlessness. So I guess I'm taking it whether I like it or not...

I did some research and would have preferred cogentin, to be honest.
I'm sorry you didn't get to talk to your pdoc, bluebicycle, but at least you can try out the propranolol, for now. Maybe propranolol will really help. You don't know until you try it.

Of course I can't say how you will respond to propranolol, but I can say it likely eases my anxiety a bit. It had been helpful for past Lithium tremors. It's great at keeping my ticker beating at a proper rate. And also, it gives me ZERO side effects. I can't, personally, say that about Cogentin.

Sometimes a certain type of anxiety can bring on inner restlessness. I think that's why some people benefit from propranolol in cases of suspected akathisia, or maybe RLS. I'll be crossing my fingers that it gives you some relief so you can have a nice weekend .
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Default Jan 31, 2020 at 04:22 PM
  #11
hmm... I took it about an hour ago...

I definitely feel less anxious, which is super weird because although I know it's prescribed off label for anxiety, I never thought it would work so well for that, but I also feel sluggish now. I'm talking pretty slowly. I'm in like... super zen mode.

BirdDancer, maybe you're onto something... Maybe this wasn't akathisia and instead just anxiety? Or maybe it is akathisia still. I have no idea.

What I don't like about propranolol is that it's very short acting, with a half-life of approx 3-6 hours. I would prefer something that I can take 1x a day. Like, one and done. It's going to be hard to take it 2x a day, especially when I'm at work or walking around the city.
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Default Feb 03, 2020 at 07:53 PM
  #12
I experienced akathesia when I was on Abilify. I don't think I have ever felt such a bizarre and disturbing mind/body sensation. My pdoc prescribed Cogentin. The Cogentin didn't do anything to stop the akathesia, but it sure had some strange side effects. One was that my nose and mouth were so dry that it was truly hard to swallow and I felt like I couldn't breathe well.

But, that was with Abilify - which I stopped taking (it had too many problems, not enough benefits). I'm now on Latuda and 2mg Cogentin. Fortunately, the dryness went away. The Cogentin, however, doesn't seem to be helping with hand tremor. I'm kind-of hoping my pdoc prescribed Propanalol instead

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Default Apr 27, 2020 at 02:29 AM
  #13
You could ask about gabapentin or one of the other “gabapentinoids” (e.g., Horizant)? RLS is an approved use.
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Default Apr 27, 2020 at 06:18 AM
  #14
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Originally Posted by bluebicycle View Post
ok, I am going nuts here. I'm 99% sure I have Restless Leg Syndrome (RLS) because of my nonstop pacing and feeling restless in my legs. I don't think I have akathisia because this is not an entire body thing, but I put akathisia in the title because the two conditions are similar enough.

What treatments have you tried for akathisia or RLS? How did they work out for you? I'm trying to do some research. Thanks!
Hi Thread.Im new here but certainly not new to RLS .I have had this disease since 2007 or thereabouts . The first time I tried to explain symptoms to my doctor from the little town of Stockton Springs Maine , he had no idea what I was talking about . Ive been on Ropinerole since 2008 .also 300 mg of Gabapentin a day . But heres what my disease is like every day . I take 600 mg of Ropinerole 3 times a day . i rarely can go 8 hours without them before the feelings start .the first nerve jump, convulse . maybe a electric charge and i have to move my legs. If I dont take my med it will within 10 minutes have me in a panic. It gets so bad my whole body is a tense tight anxious and I feel overwhelmed . without my pills I think I might loose it . even with my pills im always tense .anytime in the day if I think about my shoulders I realize they are always holding on. I think Ive been in fight or flight mode all my life . Trauma . I hope I offered some insight . and If I can share anything with you Id be honored .
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Default Apr 28, 2020 at 04:14 AM
  #15
Hey @bluebicycle You posted this in the bipolar section, is that your only mental health disorder? Do you think it could be adhd?

Quote:
Originally Posted by bluebicycle View Post
ok, I am going nuts here. I'm 99% sure I have Restless Leg Syndrome (RLS) because of my nonstop pacing and feeling restless in my legs. I don't think I have akathisia because this is not an entire body thing, but I put akathisia in the title because the two conditions are similar enough.

What treatments have you tried for akathisia or RLS? How did they work out for you? I'm trying to do some research. Thanks!

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Default Apr 28, 2020 at 08:48 PM
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Hmm...another thread that was buried and resurrected, which is good.

How is the RLS going, blue?

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Default Apr 29, 2020 at 01:47 PM
  #17
I started with that crap when they put me on risperdal last month. They gave me requip with it and BAM back to normal!

Seriously ask about it. I was going crazy and now I’m fine

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Default Apr 29, 2020 at 01:48 PM
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Also-i taken it twice daily

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Default Apr 29, 2020 at 02:40 PM
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I started with that crap when they put me on risperdal last month. They gave me requip with it and BAM back to normal!

Seriously ask about it. I was going crazy and now I’m fine

What is requip?

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Default Apr 29, 2020 at 06:33 PM
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What is requip?
When I was in ip my nurse has the idea to add it because cogentin was not enough. Requip
Is for the restless feeling so she suggested it to my dr.
They had given me Benadryl first to make sure I wasn’t allergic. The symptoms started after my first dose! 100mg Benadryl didn’t cut it. So we did the requip-bam! All better. I hate taking extra meds but the
Risperdal was helping and is helping soooooo

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