Can someone describe akithisia?

[[Ho...]]

I don't even know if I've spelt it right. I'm struggling with this feeling of physical tension that can only be released by movement, mostly my legs and hands, but it's allover to a lesser extent.

Is that akethisia? However you spell it?

[[Fa...]]

Hi there,

I'm sorry you are experiencing this, HC.  I know how awful it is as you know.

People do experience it differently.  And, the technical definition of Akathisia is 'inability to sit'.  But, it is more than that.

Where are you feeling the physical tension?  How are you relieving it...what kind of movement do you need to do?  And, the 'all over' feeling...what is that feeling you are experiencing?

[[Ho...]]

You know, I can't really pinpoint where I feel the physical tension. I just notice when it's gone in the evening and I can suddenly relax.

I relieve it by walking or moving, either on the treadmill or just doing a chore. Sometimes I can jiggle a foot pretty strenuously and can sit a little longer while I jiggle (or lay on the floor and jiggle one foot!) 

Lately I suddenly feel this surge of anxiety or tension—I don't know what it is or what else to call it—and I can hardly stand it; I wring my hands or stop whatever I'm doing. Then in a moment, I break into a sweat and poof, the tension abates. So crazy.

But the hardest thing is this tension that starts in the later afternoon and goes on until bedtime. Evenings used to be better. 

I'm just trying to figure out what this is. Not that I can do anything about it!

Thanks so much for the note, Faith!!

[[Em...]]

This topic comes up time and time again. 
 

It seems a popular word to describe an array of different symptoms. In my opinion the hallmark of true akathisia comes with an extreme urgency to end one’s life immediately. This is because the sensations are so unbearable you would choose death over living like that. 

[[Em...]]

I am sorry my response induced fear for you @[Fa...]. But suicidal level akathisia is sadly many peoples realities in this. 

[[Pa...]]

54 minutes ago, [[E...] said:

This topic comes up time and time again. 
 

It seems a popular word to describe an array of different symptoms. In my opinion the hallmark of true akathisia comes with an extreme urgency to end one’s life immediately. This is because the sensations are so unbearable you would choose death over living like that. 

@[Em...], @[Fa...] is correct, your comment isn’t helpful and can inflame the fear so many of our members are already dealing with but you did preface this by saying this was just your opinion.

Fortunately for most of us who suffer benzodiazepine withdrawal, these feelings and symptoms only mimic varying degrees of “true akathisia”, and from what I’ve observed on the platform, members experiencing severe symptoms are on other psychotropic medications so its impossible to know what medication is responsible.  Most members I’ve observed in my time here who report symptoms similar to akathisia recover completely. 

 

[[Em...]]

@[Pa...] if you feel my description of many peoples lived experience of akathisia is harmful to this thread then you can always delete it. It doesn’t bother me. 

[[Pa...]]

3 minutes ago, [[E...] said:

@[Pa...] if you feel my description of many peoples lived experience of akathisia is harmful to this thread then you can always delete it. It doesn’t bother me. 

It’s not our practice to delete posts of members stating their opinion. 

[Guest [...]]

@[Em...]

I think the problem I have with your statement - “This is because the sensations are so unbearable you would choose death over living like that” is that it appears to suggest that everyone who has actually experienced akathisia results in each one of them ending their lives. 

We sometimes need to be very careful with the way we phrase a sentence. 

[[Em...]]

@[Wi...] I can understand that. I truly believe until one lives that level of suffering and anguish, it is impossible to imagine.
I think if people are finding that sentence hard to read then mods can just delete the post. I won’t be offended!
I’m actually going to check out of this thread now. As the notifications are just people saying they don’t like my description of akathisia

Edited September 11, 2023 by [Em...]

[Guest [...]]

@[Em...]

Luckily I haven’t experienced akathisia myself, however, the experience is quite familiar to Faith25624. 

As Pam has mentioned… it’s not our practice to delete a post stating a members opinion. 

 

 

[[Fa...]]

@[Ho...]  You know what...it sounds like what you are experiencing is a taste of AKA type symptoms (Pamster worded it well) to a far lesser degree brought on by your NS healing.  And, you are well over a year out now...these symptoms may just be passing through and will be on their way out again sooner than later.

The AKA community is very protective over how the term is used, and many feel that the term Akathisia is used too frequently.  My view on AKA is that there is far more to learn about it, because there isn't enough known, and that there is more to AKA than its medical definition.  Having said that, we do need a word to express what it is we are experiencing.

I have had AKA for a good while, and I have had severe AKA.  However, I have also experienced a lesser intense version as well.  I will still call it AKA.  Many use the term inner agitation or inner dysphoria when there isn't a definite need to pace/move...a very restless and very uncomfortable energy within the body that makes you want to release the energy some way rather than being 'forced' to pace.  I also use the term 'mental AKA' as I feel, as many do who experience AKA, that there is most definitely a 'mental' component for many.  I have been corrected for using the term before.  These terms seem to be frowned upon in the Akathisia community.  Hopefully, one day, we will know far more and there will be a cure for it.  And, I feel there needs to be more accepted terminology for all the varying degrees of intensity and its manifestations.  These are my opinions based on my experience with it.  I feel comfortable expressing my thoughts on this.  

I wish you so much healing and a fast passage through these symptoms.  

Warmly,

F   

Edited September 11, 2023 by [Fa...]

[[Ho...]]

Thank you all, I had no idea this was such a fraught topic, so I appreciate all the more people stepping up and trying to help! Yes, I hope it's passing through too. I have had RLS for decades; it always started at night and actually didn't come on all by itself. Looking back, I realize I'd stopped taking an anti-depressant after over two years of taking one (Zoloft). I just stopped it; I wanted to feel myself again, even if that self got a bit depressed at times! Now, I wonder if all of the years of meds didn't stem from that.

Anyway! I relate to the inner tension that builds and just needs an outlet. It's not RLS but similar in that you just have to move or do something! I'm perfectly happy for people to tell me I don't have akathisia. I'll just be glad when it blows away. 

Thanks for being such a sweetheart, Faith!

[Guest [...]]

@[Ho...]

I had RLS for years. I’d have to walk out of the cinema half way through a movie it was that bad. I didn’t know it was a symptom of worsening gut issues at the time, but the interesting point here is that it developed into what I termed as ‘restless core’. Rather than the restlessness beginning in the legs and mostly only affecting in the legs, it actually shifted to my core… emanating from the pelvic area, and that was like RLS on steroids. I don’t really get it like I once did, because I now keep a strict diet and avoid the foods that seemed to trigger it. However, I do still get a lesser variation of it as a withdrawal symptom now and then. 

[[Ho...]]

Winters sun, I totally get the movie thing! I'd go down to the doorway and stand to watch the move, so I could move my weight from leg to leg. The good news is that you were able to get to the source, which I think is amazing. I've never found the source of mine; I just believe it kicked in when I stopped taking Zoloft. There's no other circumstance I can point to. 

Having it move to your core must have been just killer. I was very glad to read you don't get it like you once did. I can't imagine how you even figure it out! Very impressive!

[[Re...]]

On 10/09/2023 at 19:01, [[H...] said:

I don't even know if I've spelt it right. I'm struggling with this feeling of physical tension that can only be released by movement, mostly my legs and hands, but it's allover to a lesser extent.

Is that akethisia? However you spell it?

@[Ho...], For me, severe akathisia started with an inner vibration - like a little engine in my chest. It woke me up in the middle of the night out of the blue while tapering Seroquel five months off of being CTd off of Ativan. That turned into full-body vibration. Then I started to be jolted awake by a rumbling sensation in the chest area that hurt and would force me up and out of bed to pace. I could feel the pacing coming like you feel the rumble of an earthquake coming. I would pace here and there for an hour here, an hour there but could never rest no matter how exhausted I was. Then I experienced feeling like my body was plugged into an electric socket with full-body electric shocks for days and days. It was so painful. That became skin burning which is now pins and needles all over. The pacing then erupted into hours and hours at all times of day or night. It would jolt me awake if I could sleep.

Prior to this severity, I was very restless but could lay in bed I just did not sleep well. I would have spurts of needing to walk, run, etc. I could barely eat or sit still. Sometimes I would get up in the middle of the night and pedal on the exercise bike because I had to "get energy out" from a sleep state. I did jumping jacks for no reason, etc. 

Honestly, if you have akathisia, I do not think there would be any question whether you do or do not have it. You might not know what to call it but the energy of it is nowhere near any other energy I have ever felt in my life. It is adrenaline-pumping 24/7 in such an unnatural way that it feels like torture. I have never heard of someone with akathisia not having it at certain times of day, it is present consistently. I see many people on forums talking about akathisia who may or may not have it. I was diagnosed with it based on my symptoms and observation of me. It is hard to get a correct diagnosis due to a lack of real information about it.  The intense and uncontrollable non-stop adrenaline pump is a part of it though. Some people don't have the movement element. The movement is not required but the movement is a sign of severe akathisia for sure. I have paced for 12 hours and have been unable to hold my legs still and this went on for months.

I hope this description helps. Much love.

Edited September 12, 2023 by [Re...]

[[Ho...]]

Rebecca29, thank you for posting. I know you, of all people, know what akathisia is. I know your suffering has been beyond belief. Some of what you've written I can handily relate to. The absolute need to exercise right now to burn off the weird energy whether or not I was exhausted is one. I have electric jolts here and there but they don't bother me, but I do have the burning skin which does bother me quite a bit when coupled with cortisol surges and crazy chemical anxiety.

Again, I just want to thank you for posting. I've followed your journey a bit, and was heartened when I read that Seroquel was the culprit. And disheartened to hear that your akathisia has come back. All I can say is that I hope it stops as quickly as it started. I want it to just go. I'm so sorry that you're going through this. 

All the best, Rebecca29, from my heart,

HC

[[Wi...]]

I am not sure if what I have is all aka or what but I have weird feelings in my body such as very odd tension on some muscles, sometimes internal itching or burning, the other day I had RLS in my legs with buzzing and that almost made ma jump out of bed, I couldn’t sleep. Those feelings are totally unnatural, almost corrosive. I rarely get adrenaline with this, though. I do get surges but they will not happen on an average day. You can look through my previous posts to see what I am describing. But the weird tension with burning makes me want to stand as still as possible, moving usually seems to be making it worse but I sometimes have a need to shake off some of these sensations. Whatever I have comes in waves and windows. I can be fine or rather fine for days and then I am non-functional for days. 

Edited September 15, 2023 by [Wi...]

[[me...]]

On 11/09/2023 at 18:32, [[E...] said:

I am sorry my response induced fear for you @[Fa...]. But suicidal level akathisia is sadly many peoples realities in this. 

Wow that is scary I've just started to taper do you take the lessser dose daily or weekly many thanks🧜‍♀️