Akathisia vs restlessness, anxiety, agitation

[Erimus]

Please post here for information and questions regarding akathisia.

 

 

[manymoretodays]

@MostlyAlivemoved your post to a pre-existing topic.  Thanks Erimus.  You'll find it above and I'll quote, as from my PC we're into a new page now of this topic.

  

16 hours ago, MostlyAlive said:

We all get sick, fight cancer, broken bones, lose money, careers, loved ones... but people who experience akathisia (including myself) say "it's impossible to describe"

and then - almost invariably - use the word, "torture" proceeded by a "really" or "truly," as if to indicate they wish to be taken literally.

 

Why is this? 

 

 

Edited January 27, 2023 by manymoretodays
added quote

[Joey805]

On 1/26/2023 at 12:12 AM, MostlyAlive said:

We all get sick, fight cancer, broken bones, lose money, careers, loved ones... but people who experience akathisia (including myself) say "it's impossible to describe"

and then - almost invariably - use the word, "torture" proceeded by a "really" or "truly," as if to indicate they wish to be taken literally.

 

Why is this? 

 

 

I think maybe because most people experience akathisia-like symptoms sometimes, so it's important to qualify one's suffering as something that is above and beyond the minor annoyance of knee bouncing after a cup of coffee or before a big interview.

 

My own experience in this regard is very mild and not something I would consider to be torturous, however, I have seen footage of patients who suffer with this tremendously, who pace around for hours on end and are practically incapable of any rest no matter how hard they try. Many people might not understand how severe it can actually be, and how profoundly that can affect one's mental health. It's incredibly distressing to essentially have no control over one of the few things we expect to have control over - our bodies. 

It's sort of like really bad migraines. Everybody has headaches, so if you say "I have a terrible headache" people might not fully grasp what you're dealing with. If they haven't experienced a migraine themselves, it understandably may not seem like such a big deal to them. "People don't realize how terrible migraines really are" is an extremely common topic among those who suffer from them.

It's valid to wish to be understood, and to wish that your suffering is taken seriously. "Torture" is an apt description for a condition that prohibits you from rest and deprives you of bodily autonomy.

[MostlyAlive]

Beautiful answer...

A valid wish to be understood, - to preempt someone from underestimating the situation. (a migraine is not a bad headache)

   Even "torture" is so common that we need to qualify it... "no!, I mean real torture!" to add the required gravitas.

 

But it's not "real agony" or "real devastation..." but torture. Why "torture." Why do we specifically use "torture" to describe the qualities of the experience.

Reason I ask is -  it's the only word I ever used for it. Before I knew it's name, or that others had it, or that they ALL described it using the same word... torture. AND I couldn't watch a torture scene in a "show" without a flashback for about 5 years. 

 

deprivation of bodily autonomy?

- is common in many diseases and conditions, but do sufferers describe their condition as (specifically)  "torture?" Prolly not: minus five 

- is fundamental to torture. YES so: plus 5 

 

 prohibits you from rest

-  yup, I think hammer hitting nail. plus 100

 

Remember that Abu guy, wired up,  standing balanced on the cardboard box above the 'water' soaked floor?

(Since that's called a "Stress position," then of course it makes sense to call waiting in line at the ice cream parlor.... torture.)

 

no rest

AND terror,

AND it's your own fault if (when) you fall down onto the watery prison floor.

 

 

Yeah Joey... I think no rest is a good answer.

 

 

[KittenLePurr]

On 3/22/2011 at 6:54 PM, Altostrata said:

This is what a knowledgeable doctor told me:

 

Agitation is relieved by moving around, but akathisia and restless leg syndrome (RLS) are not. All of them are related to dopaminergic dysregulation; it is unclear whether it's too much dopamine or too little dopamine, this could vary from person to person, or even in the same person, producing the same symptoms. Dopaminergic dysregulation is the key.

 

The doctor said he wouldn't try to treat dopaminergic dysregulation with drugs. From what he's seen, it resolves in time.

 

On 3/13/2011 at 9:26 PM, Altostrata said:

ADMIN NOTE Also see

 

Weighted blankets & Bed Tents for restlessness, akathisia, insomnia and anxiety

 

Blog: My Akathisia Experience by akathisiainfo contains many reports of drug-induced akathisia and recovery from it

---

 

Addition September 15, 2022:

 

Due to the tireless work of patient advocates over the last several years, akathisia has become a better known adverse effect of drugs. However, I have seen more drug-induced activation than akathisia. Quite frequently, members report here they have "akathisia" when they're taking too many "brakes" (sedating drugs such as benzodiazepines, antipsychotics, sleep drugs, etc.). This is not what I would call akathisia but activation from the paradoxical effect of sedating drugs at doses that are too high. 

 

If you take too many "brakes", your nervous system rebels against being so pressed down, responding with symptoms of activation that might be taken for akathisia. That is a paradoxical reaction, because the drugs are supposed to be calming rather than activating. You have control over a paradoxical reaction, because you can eliminate it by reducing the drug.

 

You do not have control over akathisia, which is related to a movement disorder, and may persist or emerge after you reduce the drug.

 

- Altostrata

---

 

There's an interesting discussion of akathisia buried in this May 25, 2011 post by psychiatrist Steve Balt http://carlatpsychiatry.blogspot.com/2011/05/horizant-second-coming-of-gabapentin.html

 

".... However, the symptoms of RLS (restless leg syndrome) are rather nonspecific: "an urge to move the limbs, which improves with activity and worsens with rest." That's about it. Which leads to yet another problem (a problem that GSK and Xenoport don't see as a problem, that's for sure): with such vague and common symptoms (who among us hasn't felt somewhat restless at times, with interrupted sleep?), a lot of people might get diagnosed with RLS when their symptoms are actually due to something else.

 

A while back, a fellow blogger directed me to the RLS "patient page" on the National Institutes of Health (NIH) web site, where RLS was—and still is—referred to as "akathisia." However, these may be two entirely different things. Akathisia (from the Greek for "not sitting still") has long been recognized as a side effect of some—perhaps most—psychiatric medications, from antipsychotics to antidepressants. It is often described as an "inner restlessness," a "need to keep moving." Sometimes it's associated with extreme emotional distress. In terms of severity, it can range from a mild nuisance to—in some cases—aggressive tendencies. (Indeed, the psychiatrist David Healy has even linked psychotropic-induced akathisia to suicide attempts and violent behavior.)

 

Psychiatrists really don't know exactly what causes akathisia, and disagree on how to treat it. It may have something to do with dopamine blockade, or something completely independent. Treatment might consist of benzodiazepines (like Ativan or Valium), beta blockers (like propranolol), or discontinuing the drug that caused it in the first place.

 

Unlike RLS, which seems to bother people most when they are lying down (hence its tendency to disrupt sleep), drug-induced akathisia is worse when people are awake and moving around. Sounds like a simple distinction. But nothing is quite this simple, particularly when psychiatric drugs—and real people—are involved. In fact, many psychiatric meds can cause other motor side effects, too, involving (theoretically) yet other neural pathways, such as "parkinsonian" side effects like rigidity and tremor. In fact, some antipsychotic drug trials show "restlessness" and "akathisia" as entirely separate side effects (and when I've tried to ask experts to explain the difference, I have never received a straightforward answer.) ...."

I'm late to this party, but these are helpful! I've had terrible akathisia some nights and mornings lately, but other times, it's more mild, and I guess it's actually not akathisia but more restlessness and agitation. Like a few minutes ago, I got extremely panicked and felt like my muscles were twitching/itching, but not to the point of wanting to burst out of skin like I'm on fire with no room to stop, drop and roll (that's my description of akathisia, anyway--pardon the dramatics but it sure feels like that sometimes😖). 

 

So my approach could/should be different...I haven't read through this thread yet but am searching for akathisia/restlessness tips (although I know there's not really a "cure..."). Thank you all

[willieverheal]

Do you think these are symptoms of aka or something else stemming from neurological dysfunction? I haven’t really found it described anywhere but I get this weird thing. 

It’s like the base of my neck and the back of my head have a lot of pressure. At first for a long time it felt like head pressure from anxiety and I didn’t give much attention to that but at this point it feels like deep electric steady pressure beginning at the back of my neck on some days. It started going down my back and sometimes the pressure or tension is felt in the throat, chest, stomach, again like it could feel with anxiety. Very odd. I don’t have the adrenaline surges or anything like that and I don’t really feel energised to the max but it’s this electric feeling but not a vibration, I have no words to describe this. Not sure what that is. It’s terrible as it’s quite forceful when it flares but it doesn’t make me want to move or rock. Sometimes the pressure feels like my brain is falling asleep or like somebody is pulling it from behind. It’s all very disturbing but it’s not terror or restlesssness.

 

Today, on the other hand, I feel like I have acid in veins and there is some electric activity in my brain and the back of my neck and I feel like it’s going to shoot and I am going to have a seizure, it also causes a lot of pain in my upper body, mainly arms and shoulders, like I can barely move, need to stay in bed, my right arm feels like it will cramp up. Also burning sensations inside. Feels like my cells are angry, sizzling. My symptoms are so very physical. And they are getting worse every week, I am not on any meds and haven’t taken anything in a long time :(

 

I don’t know what to make out of these symptoms, I don’t know whether it’s aka getting worse or something else. 

[Erimus]

3 hours ago, willieverheal said:

Do you think these are symptoms of aka or something else stemming from neurological dysfunction? I haven’t really found it described anywhere but I get this weird thing. 

It’s like the base of my neck and the back of my head have a lot of pressure. At first for a long time it felt like head pressure from anxiety and I didn’t give much attention to that but at this point it feels like deep electric steady pressure beginning at the back of my neck on some days. It started going down my back and sometimes the pressure or tension is felt in the throat, chest, stomach, again like it could feel with anxiety. Very odd. I don’t have the adrenaline surges or anything like that and I don’t really feel energised to the max but it’s this electric feeling but not a vibration, I have no words to describe this. Not sure what that is. It’s terrible as it’s quite forceful when it flares but it doesn’t make me want to move or rock. Sometimes the pressure feels like my brain is falling asleep or like somebody is pulling it from behind. It’s all very disturbing but it’s not terror or restlesssness.

 

Today, on the other hand, I feel like I have acid in veins and there is some electric activity in my brain and the back of my neck and I feel like it’s going to shoot and I am going to have a seizure, it also causes a lot of pain in my upper body, mainly arms and shoulders, like I can barely move, need to stay in bed, my right arm feels like it will cramp up. Also burning sensations inside. Feels like my cells are angry, sizzling. My symptoms are so very physical. And they are getting worse every week, I am not on any meds and haven’t taken anything in a long time

 

I don’t know what to make out of these symptoms, I don’t know whether it’s aka getting worse or something else. 

Doesn't sound like akathisia to me. Just more symptoms that fall under the wide umbrella of neurological dysfunction. If you are drug free they will likely all improve with time, and lots of patience. I find a symptom is most unnerving the first time it happens, after that it just becomes background noise.

 

The key is distraction, as much as you can physically and mentally manage.

Edited January 26 by Erimus

[PortugueseSea]

8 hours ago, willieverheal said:

Do you think these are symptoms of aka or something else stemming from neurological dysfunction? I haven’t really found it described anywhere but I get this weird thing. 

It’s like the base of my neck and the back of my head have a lot of pressure. At first for a long time it felt like head pressure from anxiety and I didn’t give much attention to that but at this point it feels like deep electric steady pressure beginning at the back of my neck on some days. It started going down my back and sometimes the pressure or tension is felt in the throat, chest, stomach, again like it could feel with anxiety. Very odd. I don’t have the adrenaline surges or anything like that and I don’t really feel energised to the max but it’s this electric feeling but not a vibration, I have no words to describe this. Not sure what that is. It’s terrible as it’s quite forceful when it flares but it doesn’t make me want to move or rock. Sometimes the pressure feels like my brain is falling asleep or like somebody is pulling it from behind. It’s all very disturbing but it’s not terror or restlesssness.

That could be "just" neurological dysfunction or, if akathisia, residual akathisia. Either way, it will resolve over time. It does suck though.

I have been having similar symptoms as I recover from akathisia, I still get terror and bad agitation at times though.

[willieverheal]

Thanks, people. For me it’s worse than it’s ever been tbh. Any idea why this is getting worse when I am drug free? Yesterday I again had severe head pressure and my brain had this electrical storm and it started squeezing and kind of electrocuting me, I got hot and buzzing in my entire upper body and it felt a bit like a panic attack. It passed within 20 minutes but felt terrible 😕 Maybe that was the terror. It was the first time it happens that bad. However, I just couldn’t move. 

[Safran]

I have some inner (mental) restlessness that is very intense, and in my stomach there is constant discomfort, pain, fear, I don't even know how to describe it. I don't even know if it's akathasia. In addition to axiosity and severe OCD, it's brutal. I'm constantly in bed, and sometimes I don't want to lie down because of this restlessness.

[Erimus]

On 1/27/2024 at 6:40 AM, willieverheal said:

Thanks, people. For me it’s worse than it’s ever been tbh. Any idea why this is getting worse when I am drug free? Yesterday I again had severe head pressure and my brain had this electrical storm and it started squeezing and kind of electrocuting me, I got hot and buzzing in my entire upper body and it felt a bit like a panic attack. It passed within 20 minutes but felt terrible 😕 Maybe that was the terror. It was the first time it happens that bad. However, I just couldn’t move. 

 

Symptoms will often get worse before they get better. There's no way of knowing when you are at the worst point of each symptom, unfortunately.

[peaceandlove]

On 1/28/2024 at 7:03 AM, Safran said:

I have some inner (mental) restlessness that is very intense, and in my stomach there is constant discomfort, pain, fear, I don't even know how to describe it. I don't even know if it's akathasia. In addition to axiosity and severe OCD, it's brutal. I'm constantly in bed, and sometimes I don't want to lie down because of this restlessness.

I feel the exact same way @Safran

im also in bed a lot 

[savinggrace]

On 5/30/2022 at 5:02 PM, kostakonkordia said:

Vit B6 and akathisia:

https://www.madinamerica.com/2018/01/vitamin-b6-effective-reducing-antipsychotic-induced-akathisia/

I wonder why noone has found this so far... 

Thank you for posting this link. Sadly my 43 year old son has been put on nearly every anti-psychotic there is (before I knew about it; I would have moved mountains not to let this happen). He is now a shell of the person he was a year ago from these drugs. He is off the anti-psychotics now (after much coaching from me to convince his doctor the drugs were killing him). He continues to suffer from akathisia. I just encouraged him to take a good B complex recently but I am going to send him this link about B6. One does have to be careful about not over-doing it on B6 as it can cause peripheral nerve damage when dosed too high. A better choice is to take the active form of B6 (P5P). It is metabolized better and seems to cause fewer side effects. Thank you for posting this link. 

[Kat66]

On 1/28/2024 at 2:03 PM, Safran said:

I have some inner (mental) restlessness that is very intense, and in my stomach there is constant discomfort, pain, fear, I don't even know how to describe it. I don't even know if it's akathasia.

I have exactly the same set of sensations, pretty much non stop, it's horrible.

[peaceandlove]

1 hour ago, Kat66 said:

I have exactly the same set of sensations, pretty much non stop, it's horrible.

do you feel like your afraid of everything sometimes? @Safran @Kat66

 

when my fear & anxiety is so bad I can’t even watch tv or be on my phone. Sounds will even scare me, random objects, people faces etc 

[Kat66]

4 hours ago, peaceandlove said:

do you feel like your afraid of everything sometimes? @Safran @Kat66

 

when my fear & anxiety is so bad I can’t even watch tv or be on my phone. Sounds will even scare me, random objects, people faces etc 

Yes. To the point where I have to have virtual silence. I can watch my favourite shows on tv but anything loud sets off the fear response. Same with things like car horns, loud voices, pretty much any sound. It’s like I need to be wrapped in layers of cotton wool to even function.

[PortugueseSea]

Constant mental restlessness is one of the most serious problems that come with akathisia and or withdrawal/adverse reaction syndrome.  It will calm down over time. Distract as much as you can. Also, get as much sleep as you can!

 

It has improved for me but it still spikes sometimes!

[peaceandlove]

I really like this guys channel who is 44 months into withdrawal. He describes the mental akathisia very well here:

 

https://youtu.be/ujEdLnunJTM?si=YdxW40Xe6a1gsDzl

[PortugueseSea]

26 minutes ago, peaceandlove said:

I really like this guys channel who is 44 months into withdrawal. He describes the mental akathisia very well here:

He is brilliant, he should have his own thread here... Matt Marin!

[peaceandlove]

I would like to add that I read somewhere that Antibiotics, antihistamines, steroids, birth control, antifugal, anti nausea & stool sifters etc can trigger akathisia flare ups. This was never told to me & I wish it was.

 

my question is do we have to avoid these things for life??? Is this a life sentence. Or once we’re fully healed can we use these things again no problem 

[Safran]

On 2/9/2024 at 6:32 PM, peaceandlove said:

Yes, and only at night when I feel a little better I can watch TV or the phone, and during the day I've been bedridden for 2 months and I can't stand anything and I'm scared as you say.

Yes, and only at night when I feel a little better I can watch TV or the phone, and during the day I've been bedridden for 2 months and I can't stand anything and I'm scared as you say.

[Maybe]

Hello all,

 

I had a severe reaction to 4 pills of Lexapro in 2009. I close to made a full recovery, but some problems stayed with me. One of them was mild akathisia. It only came up when I carried out some kind of activity where I had to make very concentrated and repeated movements like copy and paste on the computer. Hard to describe. Well, 1.5 weeks ago I drank a coffee and bam, there it was again. Difference now is, since then, I had it nearly every day. I know that it also can be an early indicator of parkinson. I guess is no one here who had the same experience, that the akathisia came back again?

 

Best,

Maybe

[KenA]

On 2/10/2024 at 10:22 AM, peaceandlove said:

I would like to add that I read somewhere that Antibiotics, antihistamines, steroids, birth control, antifugal, anti nausea & stool sifters etc can trigger akathisia flare ups. This was never told to me & I wish it was.

 

my question is do we have to avoid these things for life??? Is this a life sentence. Or once we’re fully healed can we use these things again no problem 

I use antibiotics, antihistamines, antifungal and anti nausea with no issues at all now. Once you are healed, you return back to normal

[peaceandlove]

5 hours ago, KenA said:

I use antibiotics, antihistamines, antifungal and anti nausea with no issues at all now. Once you are healed, you return back to normal

thank you for the encouragement ❤️ @KenA

[Catzbestfriend]

On 2/11/2024 at 5:03 AM, Maybe said:

Hello all,

 

I had a severe reaction to 4 pills of Lexapro in 2009. I close to made a full recovery, but some problems stayed with me. One of them was mild akathisia. It only came up when I carried out some kind of activity where I had to make very concentrated and repeated movements like copy and paste on the computer. Hard to describe. Well, 1.5 weeks ago I drank a coffee and bam, there it was again. Difference now is, since then, I had it nearly every day. I know that it also can be an early indicator of parkinson. I guess is no one here who had the same experience, that the akathisia came back again?

 

Best,

Maybe

I get this sometimes though not as frequent as you. I find it's in my right leg and when I'm trying to press on a pedal or between mid muscle movement I can't control the jerking. It's not all the time and I had it once or twice before my whole adverse experience with escitalopram, but I have found since the event I am now having it more regularly. For myself, my guess is that it's still from a destabilized nervous system. I am wondering in your case though, since you are somewhat recovered if the caffeine was simply to much for your nervous system and triggered this 'weakness' in your nervous system again. When you had the adverse reaction your body manifested that destabilization as akathisia - almost like you were already prone to it. 

This is my theory for the moment in connection with my own issues, though mine seem to run in the nature of a brain zaps - the remaining symptom plaguing me daily in the window/wave routine is what I can only describe as brain zaps (not electrical in nature) more like a split second of my 'brain skipping a beat' or shivering, like when a video is buffering. It feels like a mini seizure or a skip-restart-blink experience, almost like a wave passes through my brain and occasionally accompanied by other sensations. I'll get these several times a day in a wave, especially worse at night. My symptoms also seem to be unique.

I have had most of the other reactions that I read from others on here as well of course, but they seem to be subsiding now at the 6 month mark. This one went away for a while as well and then has come back full force. I am beginning to wonder if this is just my nervous system's way of manifesting the destabilization and potentially chronic anxiety. So if there's a weakness in my nervous system it comes back as brain zaps - caffeine ramps these up as well. Wondering if it's similar to what's happening with you. 

[Joey805]

3 hours ago, Catzbestfriend said:

 

This is my theory for the moment in connection with my own issues, though mine seem to run in the nature of a brain zaps - the remaining symptom plaguing me daily in the window/wave routine is what I can only describe as brain zaps (not electrical in nature) more like a split second of my 'brain skipping a beat' or shivering, like when a video is buffering. It feels like a mini seizure or a skip-restart-blink experience, almost like a wave passes through my brain and occasionally accompanied by other sensations. I'll get these several times a day in a wave, especially worse at night. My symptoms also seem to be unique.

 

Yeah, brain zaps are a well-documented withdrawal symptom for certain medications, particularly benzos and some SSRIs. I experienced them severely when I stopped taking Klonopin (clonazepam) cold turkey. As a side note, don't do that - nobody told me that cold turkey benzo withdrawal can be fatal. I also experienced them occasionally in the first few weeks after ceasing Seroquel. The frequency winds down over time, though it might be around a year before you have your last brain zap.

[Catzbestfriend]

58 minutes ago, Joey805 said:

 

Yeah, brain zaps are a well-documented withdrawal symptom for certain medications, particularly benzos and some SSRIs. I experienced them severely when I stopped taking Klonopin (clonazepam) cold turkey. As a side note, don't do that - nobody told me that cold turkey benzo withdrawal can be fatal. I also experienced them occasionally in the first few weeks after ceasing Seroquel. The frequency winds down over time, though it might be around a year before you have your last brain zap.

Wow thank you for this. You are the first person who has responded with similar issues. I know 6 months is not long enough really to expect them to go, but they still plague me terribly. When I get them I have to always reason myself out thinking I have a brain tumor or some neurological disease. How did yours manifest? Were they more electrical in nature? Did you feel unwell with them? I did experience a version of brain zaps before my stint with SSRI (so they must be somewhat anxiety related) but the SSRI only seemed to make them 10x worse rather than eliminate them. They are better than they were initially so I'm grateful for that, but definitely not what they were pre-meds and some days...Yeesh. Thank you so much for giving me a rough time frame and some hope that they will get better! 

[Joey805]

16 minutes ago, Catzbestfriend said:

Wow thank you for this. You are the first person who has responded with similar issues. I know 6 months is not long enough really to expect them to go, but they still plague me terribly. When I get them I have to always reason myself out thinking I have a brain tumor or some neurological disease. How did yours manifest? Were they more electrical in nature? Did you feel unwell with them? I did experience a version of brain zaps before my stint with SSRI (so they must be somewhat anxiety related) but the SSRI only seemed to make them 10x worse rather than eliminate them. They are better than they were initially so I'm grateful for that, but definitely not what they were pre-meds and some days...Yeesh. Thank you so much for giving me a rough time frame and some hope that they will get better! 

 

It's definitely hard to describe them to people who haven't experienced them, so understanding that you are experiencing them, let's say I probably felt roughly the same thing you were feeling.

 

The sensation is vaguely electrical, not quite painful but certainly not comfortable, and it indeed does seem like a mini seizure where your brain almost seems to skip a beat. They also weren't so intense that I'd drop whatever I was holding if it happened.

 

They are extremely unsettling because this is an unusual sensation and it's coming from your brain, but these are very common among people suffering from withdrawal and it seems to be harmless. I distinctly remember, when I was experiencing them, that I had considerable anxiety day-to-day fearing when the next one might happen.

 

I can safely say that there was a point in my life where I just completely forgot about them and stopped having that fear. Now I only even remember the concept of brain zaps when someone else mentions them. What I mean to say is that someday this will be so far behind you that you'll have forgotten it was ever a problem. Hang in there.

[Catzbestfriend]

12 minutes ago, Joey805 said:

 

It's definitely hard to describe them to people who haven't experienced them, so understanding that you are experiencing them, let's say I probably felt roughly the same thing you were feeling.

 

The sensation is vaguely electrical, not quite painful but certainly not comfortable, and it indeed does seem like a mini seizure where your brain almost seems to skip a beat. They also weren't so intense that I'd drop whatever I was holding if it happened.

 

They are extremely unsettling because this is an unusual sensation and it's coming from your brain, but these are very common among people suffering from withdrawal and it seems to be harmless. I distinctly remember, when I was experiencing them, that I had considerable anxiety day-to-day fearing when the next one might happen.

 

I can safely say that there was a point in my life where I just completely forgot about them and stopped having that fear. Now I only even remember the concept of brain zaps when someone else mentions them. What I mean to say is that someday this will be so far behind you that you'll have forgotten it was ever a problem. Hang in there.

It’s so easy to feel alone through this, thank you so much for relating your experience and the encouragement. 

[Dahlia50]

@willieverheal ”Today, on the other hand, I feel like I have acid in veins and there is some electric activity in my brain and the back of my neck and I feel like it’s going to shoot and I am going to have a seizure, it also causes a lot of pain in my upper body, mainly arms and shoulders, like I can barely move, need to stay in bed, my right arm feels like it will cramp up. Also burning sensations inside. Feels like my cells are angry, sizzling. My symptoms are so very physical. And they are getting worse every week, I am not on any meds and haven’t taken anything in a long time”

 

Hi, I have the same symtoms unfortunately. Horrible pressure electrical activity like an electric storm, seizure feeling, burning inside. Odd. Like nothing else and hard to explain to others. Upper body and cramp up in neck. Not everyone seems to have it that much. Feels like I'm going to pass out. When it comes it can last for hours and I can only stay in bed. Sometimes wondered if it has something to do with epilepsy as it is so electric. How can there be so much electricity?

[willieverheal]

2 hours ago, Dahlia50 said:

@willieverheal ”Today, on the other hand, I feel like I have acid in veins and there is some electric activity in my brain and the back of my neck and I feel like it’s going to shoot and I am going to have a seizure, it also causes a lot of pain in my upper body, mainly arms and shoulders, like I can barely move, need to stay in bed, my right arm feels like it will cramp up. Also burning sensations inside. Feels like my cells are angry, sizzling. My symptoms are so very physical. And they are getting worse every week, I am not on any meds and haven’t taken anything in a long time”

 

Hi, I have the same symtoms unfortunately. Horrible pressure electrical activity like an electric storm, seizure feeling, burning inside. Odd. Like nothing else and hard to explain to others. Upper body and cramp up in neck. Not everyone seems to have it that much. Feels like I'm going to pass out. When it comes it can last for hours and I can only stay in bed. Sometimes wondered if it has something to do with epilepsy as it is so electric. How can there be so much electricity?

I have no idea… it’s just surreal! Sorry you have this too!

[Maybe]

On 2/12/2024 at 7:52 PM, Catzbestfriend said:

I get this sometimes though not as frequent as you. I find it's in my right leg and when I'm trying to press on a pedal or between mid muscle movement I can't control the jerking. It's not all the time and I had it once or twice before my whole adverse experience with escitalopram, but I have found since the event I am now having it more regularly. For myself, my guess is that it's still from a destabilized nervous system. I am wondering in your case though, since you are somewhat recovered if the caffeine was simply to much for your nervous system and triggered this 'weakness' in your nervous system again. When you had the adverse reaction your body manifested that destabilization as akathisia - almost like you were already prone to it. 

This is my theory for the moment in connection with my own issues, though mine seem to run in the nature of a brain zaps - the remaining symptom plaguing me daily in the window/wave routine is what I can only describe as brain zaps (not electrical in nature) more like a split second of my 'brain skipping a beat' or shivering, like when a video is buffering. It feels like a mini seizure or a skip-restart-blink experience, almost like a wave passes through my brain and occasionally accompanied by other sensations. I'll get these several times a day in a wave, especially worse at night. My symptoms also seem to be unique.

I have had most of the other reactions that I read from others on here as well of course, but they seem to be subsiding now at the 6 month mark. This one went away for a while as well and then has come back full force. I am beginning to wonder if this is just my nervous system's way of manifesting the destabilization and potentially chronic anxiety. So if there's a weakness in my nervous system it comes back as brain zaps - caffeine ramps these up as well. Wondering if it's similar to what's happening with you. 

Well, I had it very infrequently till the day 2.5 weeks ago where I reacted strongly to a coffee. And since then I have it on and off. Yesterday nothing, today mild again. Will have to go to the neurologist to see if it is something else.

I also had the brain zaps (electrical though) but only for a few days right after my reaction. They were one of the few well-known symptoms that went away very fast and never came back. But it is very normal for symptoms to reappear and then go again or come back slightly different. Seems to be a process of shifting balances, I don't know.

[Erimus]

On 2/13/2024 at 12:20 AM, Catzbestfriend said:

It’s so easy to feel alone through this, thank you so much for relating your experience and the encouragement. 

I also experience really intense brain zaps, much like yourself. They are a relatively new symptom for me, I didn't have them for the first 1.5-2 years of withdrawal. At the moment they are somewhat out of control. I can often feel them coming, and I my body and brain spasms. It's a very unnerving experience but just keep reinforcing the fact that they will pass.

[Catzbestfriend]

2 hours ago, Erimus said:

I also experience really intense brain zaps, much like yourself. They are a relatively new symptom for me, I didn't have them for the first 1.5-2 years of withdrawal. At the moment they are somewhat out of control. I can often feel them coming, and I my body and brain spasms. It's a very unnerving experience but just keep reinforcing the fact that they will pass.

Yes when they feel out of control it's the worst! Would you say you have also noticed if they come in waves for you? Or are they all day everyday? When I was having the adverse reaction to the meds, I was having them all day everyday, all night, each week increasing in severity and often accompanied by nausea and a burning sensation. Now that I'm off the meds they are  better (less severe and some frequency) but this latest wave I experienced lasted about 2 weeks and felt like I shifted back about 3 months in my recovery. It's very hard to function with them, especially at work. I am thinking it must have been a wave...my recovery was very linear up until now so it threw me Alot. Must be difficult for you experiencing them 1.5 years after initial withdrawal. Is there anything you find that makes them worse/better?

[Erimus]

2 hours ago, Catzbestfriend said:

Yes when they feel out of control it's the worst! Would you say you have also noticed if they come in waves for you? Or are they all day everyday? When I was having the adverse reaction to the meds, I was having them all day everyday, all night, each week increasing in severity and often accompanied by nausea and a burning sensation. Now that I'm off the meds they are  better (less severe and some frequency) but this latest wave I experienced lasted about 2 weeks and felt like I shifted back about 3 months in my recovery. It's very hard to function with them, especially at work. I am thinking it must have been a wave...my recovery was very linear up until now so it threw me Alot. Must be difficult for you experiencing them 1.5 years after initial withdrawal. Is there anything you find that makes them worse/better?

Yes, they definitely come in waves. The worst one was around 2 weeks ago, I must've had about 50 over the course of a day. They are their worst between 3-5pm, but this is likely because I am still taking the drug that caused all of this. They have been a regular part of my withdrawal experience for the past 2-3 months, I forget it's been so long.

 

I wish I had filmed myself a few weeks back to document what they look like. Best way I can describe them is mini-seizures, they happen so fast but take complete control for less than a second. My mouth, arms, and legs often spasm as it happens. I wouldn't feel safe if I was driving whilst they were happening, but I currently don't do much of that.

 

I haven't found anything to help, unfortunately. I wanted to introduce 1-2000mg of fish oil but felt it was increasing feelings of restlessness too much for my liking.

[Catzbestfriend]

4 hours ago, Erimus said:

Yes, they definitely come in waves. The worst one was around 2 weeks ago, I must've had about 50 over the course of a day. They are their worst between 3-5pm, but this is likely because I am still taking the drug that caused all of this. They have been a regular part of my withdrawal experience for the past 2-3 months, I forget it's been so long.

 

I wish I had filmed myself a few weeks back to document what they look like. Best way I can describe them is mini-seizures, they happen so fast but take complete control for less than a second. My mouth, arms, and legs often spasm as it happens. I wouldn't feel safe if I was driving whilst they were happening, but I currently don't do much of that.

 

I haven't found anything to help, unfortunately. I wanted to introduce 1-2000mg of fish oil but felt it was increasing feelings of restlessness too much for my liking.

I’m sorry you’re experiencing this. I can definitely relate. I don’t get the spasms, but it definitely feels like a ‘mini seizure’ . For at least 3 to 4 months after I had come off the meds, I got similar worsening symptoms in the evening between 5-7pm. The only thing I found that helped me just a little when they got really bad in the evening, oddly enough, was peppermint tea. I did read that peppermint does have anti-anxiety properties (it’s really goood for headaches too, so it does something for the brain). It’s very subtle, but I noticed after an hour or so I did feel a little better.
I was also recommended DHA specifically, instead of just regular ‘bottled ‘omega 3’. A lot of the Omega3 pharmacy bottles have a higher ratio of EPA in them rather than DHA. DHA specifically helps the brain. I can only take 1000mg or I start to feel side effects. But I have noticed when I stopped taking it the brains zaps got worse. Obviously, this might not work for everyone, but for me I did notice a difference when I took a higher DHA omega3 versus regular omega-3 with high EPA. 

The other thing that helped a bit was oral lavender suggested by a naturopath. So far, it’s been one of the only supplements that I can handle through this all, especially at night, when trying to fall asleep with them. It might not stop the brain zaps, but it does seem to calm me a bit and help me sleep. Though, when I’m in a bad spell, nothing really helps except time, but as I’m coming out of it, I notice there is a little difference with these few things. 

I hope your symptoms start to soften and calm down, it’s certainly not easy to live with on a day-to-day basis. Thank you for taking the time to explain your experience. It’s given me a lot of hope.