FAQ/Help |
Calendar |
Search |
Guest
Posts: n/a
|
#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! |
Reply With Quote |
*Beth*, Anonymous46341, bpcyclist
|
Legendary
Member Since Sep 2019
Location: Portland
Posts: 12,681
(SuperPoster!)
4 40.2k hugs
given |
#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. __________________ When I was a kid, my parents moved a lot, but I always found them--Rodney Dangerfield |
Reply With Quote |
Anonymous46341
|
*Beth*
|
Guest
Posts: n/a
|
#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? |
Reply With Quote |
Anonymous46341, bpcyclist
|
Guest
Posts: n/a
|
#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. |
Reply With Quote |
bpcyclist
|
bpcyclist
|
Guest
Posts: n/a
|
#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.
|
Reply With Quote |
Anonymous46341, bpcyclist
|
Guest
Posts: n/a
|
#6
@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. |
Reply With Quote |
Anonymous46341, bpcyclist
|
Guest
Posts: n/a
|
#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. |
Reply With Quote |
*Beth*, Anonymous46341, bpcyclist
|
Guest
Posts: n/a
|
#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!
|
Reply With Quote |
Anonymous46341, bpcyclist
|
Legendary
Member Since Sep 2019
Location: Portland
Posts: 12,681
(SuperPoster!)
4 40.2k hugs
given |
#9
Quote:
__________________ When I was a kid, my parents moved a lot, but I always found them--Rodney Dangerfield |
|
Reply With Quote |
Anonymous46341
|
Guest
Posts: n/a
|
#10
Quote:
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 . |
|
Reply With Quote |
bpcyclist
|
Guest
Posts: n/a
|
#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. |
Reply With Quote |
bpcyclist
|
catches the flowers
Member Since Jul 2019
Location: Downtown Vibes, California
Posts: 15,701
(SuperPoster!)
4 23.7k hugs
given |
#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 __________________ |
Reply With Quote |
bpcyclist
|
Member
Member Since Jul 2017
Posts: 110
6 |
#13
You could ask about gabapentin or one of the other “gabapentinoids” (e.g., Horizant)? RLS is an approved use.
|
Reply With Quote |
New Member
Member Since Apr 2020
Location: Swanville maine
Posts: 2
3 |
#14
Quote:
|
|
Reply With Quote |
*Beth*
|
Threadtastic Postaholic
Member Since Dec 2018
Location: New Jersey
Posts: 6,006
(SuperPoster!)
5 192 hugs
given |
#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:
__________________ "I carried a watermelon?" President of the no F's given society. |
|
Reply With Quote |
catches the flowers
Member Since Jul 2019
Location: Downtown Vibes, California
Posts: 15,701
(SuperPoster!)
4 23.7k hugs
given |
#16
Hmm...another thread that was buried and resurrected, which is good.
How is the RLS going, blue? __________________ |
Reply With Quote |
Legendary
Member Since Oct 2004
Location: usa
Posts: 11,197
19 2,742 hugs
given |
#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 __________________ Bipolar 1 w/psychotic features or schizoaffective bipolar type PTSD generalized anxiety OCD celexa, prazosin, Lybalvi and prn zyprexa and klonopin |
Reply With Quote |
Legendary
Member Since Oct 2004
Location: usa
Posts: 11,197
19 2,742 hugs
given |
#18
Also-i taken it twice daily
__________________ Bipolar 1 w/psychotic features or schizoaffective bipolar type PTSD generalized anxiety OCD celexa, prazosin, Lybalvi and prn zyprexa and klonopin |
Reply With Quote |
catches the flowers
Member Since Jul 2019
Location: Downtown Vibes, California
Posts: 15,701
(SuperPoster!)
4 23.7k hugs
given |
#19
__________________ |
Reply With Quote |
Legendary
Member Since Oct 2004
Location: usa
Posts: 11,197
19 2,742 hugs
given |
#20
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 __________________ Bipolar 1 w/psychotic features or schizoaffective bipolar type PTSD generalized anxiety OCD celexa, prazosin, Lybalvi and prn zyprexa and klonopin |
Reply With Quote |
*Beth*
|
*Beth*
|
Reply |
|