Severe akathisia with terror - need some support

[[Av...]]

I've been experiencing severe akathisia with associated terror and ruminative thoughts for 5.5 months now. I am 10 years off benzos, but a night out drinking alcohol sparked a return of acute symptoms. I am really struggling with the akathisia. Some days are better than others, but I can be overwhelmed with terror and rumination and pacing up to 16 hours a day. 

Whilst pacing my thoughts often repeat "I can't do this!" and "I don't know how I'm going to get through this!"

Can anyone who has lived with this heinous affliction please give me some support? How did you deal with it? How did you get through it?

The days are so long. I am often awake with terror at 4am and immediately pacing with horrible thoughts. 

Please help me if you can. I desperately need to know how to keep going!

[[Fa...]]

@[Av...]  I have been through what you are moving through now right down to the amount of hours of pacing each day as well as waking around the same time only to start the day all over again.  I repeated the same things to myself as I was pacing.  I am so very sorry you are experiencing this.  It will come to an end.

You CAN do this.  I got through it moment by moment.  I did whatever I had to to get through each moment.  I tried to keep myself distracted.  Believe it or not, I posted on this site the most when I was in this state...it kept me going.  I was not able to watch TV or listen to music at that time, so the computer was what I utilized.  I would type a few sentence, get up and continue pacing, sit back down and continue, etc.  I, also, had someone to talk to on the phone which was incredibly helpful to me.

At the risk of sounding like a broken record, you keep going because this is a temporary state...it will end.  You have been moving through this for 5.5 months already, and you can continue to make it through each moment, each day, the same way you have so far until one day you realize that the need to pace is not present the way it was or maybe completely gone.

You can do this, and you WILL do this.  Take a piece of paper and write in big letters 'THIS IS TEMPORARY' and put in an obvious place on your circuit of pacing...like the fridge.  I think my sign said 'THIS IS MY NS IN A HIGHLY SENSITIZED STATE'...but, I like 'this is temporary' better.  Because this is a setback, I have great hope that it will not last as l long as when we are still on the drug.  Your nervous system will calm down again.  You can do this.

Warmly,

F 

[[PE...]]

Omg i will never drink again.

I had akathisia badly last year and it's to much to even try to explain for someone..

What I did was trying to take care of my hurting feets and legs. I used a chili balsam from china and that felt good.

Take care ❤️

[[Cr...]]

Hello @[Av...]. I believe I already told you my experience with alcohol setbacks. They are indeed very uncomfortable experiences. The fact that it feels like all of our recovery from benzos wd was completely undone can crush your spirit, casting you into the depths of absolute despair.

However, setbacks are not a complete return to the beginning of recovery from benzo withdrawal. They are the start of a new recovery from an obviously still sensitive cns that got destabilized. 

The first thing you may want to try to start feeling better is to accept the presence of the scary feelings. Although very unpleasant, they are simply sensations and cannot harm you. Accepting them will not get rid of them, only more healing time can do that, but it will help prevent you from having panic attacks. It will also keep you from increasing the intensity of the symptoms by adding your own natural anxiety, about the symptoms, into the mix.

Accept that you are back in recovery and that these horrible symptoms are going to be unwanted guests living in your body until their lease is up (recovery complete). Since you have been back in recovery you may note that for as bad as these symptoms got, you are still here and you have not been truly harmed. Your own fear can play a big part in recovery.

Fear is a useful tool the brain uses to protect us from danger by getting us to react to a threat, such as a tiger in the bushes, by running or fighting. Right now your recovery symptoms are the tiger... well, the brain is convinced they are. The brain believes they are a major threat because you are reinforcing the fear with your own anxiety and reactions of trying to fight or run away from them.

There are no suggestion that we can give that will put a halt to these symptoms. You must accept that time is the answer. Accepting that means you acknowledge the symptoms will be with you for awhile, coming and going, intensity fluctuating, but you will slowly stop allowing fear to be your instant/default reaction. Since you cannot run from, or fight, these symptoms you must slowly convince your brain they are not a tiger. Fear is no longer a helpful tool in this situation. 

Akathisia is a horrible experience and you are not alone in dealing with it. I know things seem bleak and uncertain right now, but they can get better if you continue to avoid gaba-a agonists and keep adding more days, hours, and minutes to your recovery tally.

I hope things settle down for you shortly.

[[Fa...]]

11 minutes ago, [[P...] said:

I used a chili balsam from china and that felt good.

I actually used Tiger Balm on my legs, hips and feet.  The cooling sensation did bring some small sense of relief as it drew my mind away, ever so slightly, from the intrusive thoughts.  It is a good suggestion, @[PE...].

Edited July 15 by [Fa...]

[[Av...]]

Thank you so much everyone for taking the time to respond. I know it will pass as this is not my first rodeo, it's just that I've never experienced such intensity and severity prior to this. The fear and terror can be so totally overwhelming. 

44 minutes ago, [[F...] said:

@[Av...]  I have been through what you are moving through now right down to the amount of hours of pacing each day as well as waking around the same time only to start the day all over again.  I repeated the same things to myself as I was pacing.  I am so very sorry you are experiencing this.  It will come to an end.

You CAN do this.  I got through it moment by moment.  I did whatever I had to to get through each moment.  I tried to keep myself distracted.  Believe it or not, I posted on this site the most when I was in this state...it kept me going.  I was not able to watch TV or listen to music at that time, so the computer was what I utilized.  I would type a few sentence, get up and continue pacing, sit back down and continue, etc.  I, also, had someone to talk to on the phone which was incredibly helpful to me.

At the risk of sounding like a broken record, you keep going because this is a temporary state...it will end.  You have been moving through this for 5.5 months already, and you can continue to make it through each moment, each day, the same way you have so far until one day you realize that the need to pace is not present the way it was or maybe completely gone.

You can do this, and you WILL do this.  Take a piece of paper and write in big letters 'THIS IS TEMPORARY' and put in an obvious place on your circuit of pacing...like the fridge.  I think my sign said 'THIS IS MY NS IN A HIGHLY SENSITIZED STATE'...but, I like 'this is temporary' better.  Because this is a setback, I have great hope that it will not last as l long as when we are still on the drug.  Your nervous system will calm down again.  You can do this.

Warmly,

F 

Thank you so much for the advice and words of encouragement. It is so appreciated. 

I will definitely put up a sign or two.  

[[Av...]]

15 minutes ago, [[C...] said:

Hello @[Av...]. I believe I already told you my experience with alcohol setbacks. They are indeed very uncomfortable experiences. The fact that it feels like all of our recovery from benzos wd was completely undone can crush your spirit, casting you into the depths of absolute despair.

However, setbacks are not a complete return to the beginning of recovery from benzo withdrawal. They are the start of a new recovery from an obviously still sensitive cns that got destabilized. 

The first thing you may want to try to start feeling better is to accept the presence of the scary feelings. Although very unpleasant, they are simply sensations and cannot harm you. Accepting them will not get rid of them, only more healing time can do that, but it will help prevent you from having panic attacks. It will also keep you from increasing the intensity of the symptoms by adding your own natural anxiety, about the symptoms, into the mix.

Accept that you are back in recovery and that these horrible symptoms are going to be unwanted guests living in your body until their lease is up (recovery complete). Since you have been back in recovery you may note that for as bad as these symptoms got, you are still here and you have not been truly harmed. Your own fear can play a big part in recovery.

Fear is a useful tool the brain uses to protect us from danger by getting us to react to a threat, such as a tiger in the bushes, by running or fighting. Right now your recovery symptoms are the tiger... well, the brain is convinced they are. The brain believes they are a major threat because you are reinforcing the fear with your own anxiety and reactions of trying to fight or run away from them.

There are no suggestion that we can give that will put a halt to these symptoms. You must accept that time is the answer. Accepting that means you acknowledge the symptoms will be with you for awhile, coming and going, intensity fluctuating, but you will slowly stop allowing fear to be your instant/default reaction. Since you cannot run from, or fight, these symptoms you must slowly convince your brain they are not a tiger. Fear is no longer a helpful tool in this situation. 

Akathisia is a horrible experience and you are not alone in dealing with it. I know things seem bleak and uncertain right now, but they can get better if you continue to avoid gaba-a agonists and keep adding more days, hours, and minutes to your recovery tally.

I hope things settle down for you shortly.

Yes, crushed spirit an despair sums me up right now. 

I will take on board all you have said and try my very best not to add to the fear. I think my biggest fear right now is how long this is going to last. But, I'm working on acceptance like you suggest. 

[[Av...]]

@[Fa...] Re: your suggestion about speaking to someone on the phone - when I have severe attacks of terror and akathisia I become severely monophobic and become almost desperate to speak with someone on the phone. I text friends and relatives to see if anyone is available, but quite often no-one is. 

[[Av...]]

@[Cr...] Also, thank you so much for putting my mind at rest that this is not a complete return to the beginning of recovery. This has also been a major concern for me. 

[[Cr...]]

4 minutes ago, [[A...] said:

think my biggest fear right now is how long this is going to last.

When this happened 5.5 months ago, if I were to tell you back then that in July you would still be dealing with these symptoms you would probably have had a breakdown and viewed 5 more months of that torture to be 'impossible' to endure. Yet here you are. You made it.

We all wish we had the recovery period end-date. Sadly, that is not possible. Even if you have 12 more months of recovery, that could be until you are practically fully healed. For all we know, the worst of this could be over next month (or week).

Healing is gradual for many. So when it feels like there are no improvements that makes it 'seem' like relief is far off. However, major healing can also be sporadic and occur overnight. Just like me, you might wake up one morning and find your symptoms have improved by 75% almost instantly.

When you finally heal, you will probably look back and think "why did I waste all that fear on this process? It never helped, it only made it worse." You do have a recovery date, and your future self is probably telling you to just bear with it. Every single minute you get through is one more minute closer to relief.

[[Fa...]]

@[Av...]  I was the same way.  I desperately needed to speak to someone and hanging up felt next to impossible...I didn't want to be alone.  There were many times I was not able to talk to anyone, too.  The monophobia is terrible.  I, also, only wanted to speak to specific people.  It was imperative that I spoke to a certain person...someone who I could unleash my 'stuff' to and it would not make them feel uncomfortable.

Often, I would need to speak to someone who would give me a proverbial 'slap in the face' to snap me out of my looping thoughts and emotions...all the negative self-talk.  Like having a cold shower...which I did A LOT.  I forgot that one.  That is why I spent so much time on the site.  It was a God send.

I needed to hear the same thing over and over again...that this was temporary...I was not 'broken'.  Unable to be reassured...I felt better for a few minutes, and then I would flip back to where I was again.  The brain is just not firing with all cylinders.

And then....it ends.  It truly does.

 

[[Av...]]

5 minutes ago, [[C...] said:

When this happened 5.5 months ago, if I were to tell you back then that in July you would still be dealing with these symptoms you would probably have had a breakdown and viewed 5 more months of that torture to be 'impossible' to endure. Yet here you are. You made it.

 

You are right, I would have absolutely freaked out. Fortunately the symptoms have dissipated in severity very slightly since January, but it's been at a snail's pace and with some to-ing and fro-ing, so very frustrating. 

[[Av...]]

8 minutes ago, [[C...] said:

When this happened 5.5 months ago, if I were to tell you back then that in July you would still be dealing with these symptoms you would probably have had a breakdown and viewed 5 more months of that torture to be 'impossible' to endure. Yet here you are. You made it.

We all wish we had the recovery period end-date. Sadly, that is not possible. Even if you have 12 more months of recovery, that could be until you are practically fully healed. For all we know, the worst of this could be over next month (or week).

Healing is gradual for many. So when it feels like there are no improvements that makes it 'seem' like relief is far off. However, major healing can also be sporadic and occur overnight. Just like me, you might wake up one morning and find your symptoms have improved by 75% almost instantly.

When you finally heal, you will probably look back and think "why did I waste all that fear on this process? It never helped, it only made it worse." You do have a recovery date, and your future self is probably telling you to just bear with it. Every single minute you get through is one more minute closer to relief.

You make some excellent points. Thank you so much for taking the time to help and support me. 

[[Cr...]]

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

@[Cr...] Also, thank you so much for putting my mind at rest that this is not a complete return to the beginning of recovery. This has also been a major concern for me. 

No problem. That was the same fear I held when one night of heavy drinking pulled me back into the realm of sheer terror.

Tomorrow morning when you wake up, I want you to 'expect' the morning terror to be there. Give it a sarcastic 'good morning' knowing it is going to be present for several hours. As you continually wake up with terror, you will notice less of a fear response over time, which in turn may decrease the intensity.

Since this is recovery there are a lot of variables you have no control over. So if morning terror goes from 10/10 down to 6/10 after a few weeks, don't be discouraged if you wake up one morning and it is back to 10/10. That is normal as positive changes are constantly going on in your brain. Just keep that sarcastic cynicism and do your best not to give these symptoms any extra attention(trying to stop them) simply because they are throwing a tantrum(more intense).

[[Av...]]

8 minutes ago, [[F...] said:

@[Av...]  I was the same way.  I desperately needed to speak to someone and hanging up felt next to impossible...I didn't want to be alone.  There were many times I was not able to talk to anyone, too.  The monophobia is terrible.  I, also, only wanted to speak to specific people.  It was imperative that I spoke to a certain person...someone who I could unleash my 'stuff' to and it would not make them feel uncomfortable.

Often, I would need to speak to someone who would give me a proverbial 'slap in the face' to snap me out of my looping thoughts and emotions...all the negative self-talk.  Like having a cold shower...which I did A LOT.  I forgot that one.  That is why I spent so much time on the site.  It was a God send.

I needed to hear the same thing over and over again...that this was temporary...I was not 'broken'.  Unable to be reassured...I felt better for a few minutes, and then I would flip back to where I was again.  The brain is just not firing with all cylinders.

And then....it ends.  It truly does.

I don't think anyone who has not experienced this horrible symptom can possibly imagine how truly terrifying it can be. The monophobia makes one feel like a child again. I'm a grown man, but I am often weeping hysterically due to the associated fear. 

Thank you for reminding me that it will end. 

[[Av...]]

7 minutes ago, [[C...] said:

No problem. That was the same fear I held when one night of heavy drinking pulled me back into the realm of sheer terror.

Tomorrow morning when you wake up, I want you to 'expect' the morning terror to be there. Give it a sarcastic 'good morning' knowing it is going to be present for several hours. As you continually wake up with terror, you will notice less of a fear response over time, which in turn may decrease the intensity.

Since this is recovery there are a lot of variables you have no control over. So if morning terror goes from 10/10 down to 6/10 after a few weeks, don't be discouraged if you wake up one morning and it is back to 10/10. That is normal as positive changes are constantly going on in your brain. Just keep that sarcastic cynicism and do your best not to give these symptoms any extra attention(trying to stop them) simply because they are throwing a tantrum(more intense).

Thank you, I will do my best to do as you say. It really is hard when the symptom severity fluctuates, but I will endeavour to keep at it. 

[[Fa...]]

26 minutes ago, [[A...] said:

I don't think anyone who has not experienced this horrible symptom can possibly imagine how truly terrifying it can be. The monophobia makes one feel like a child again. I'm a grown man, but I am often weeping hysterically due to the associated fear. 

 

No.  I do not feel that those who have not experienced Akathisia would understand.  I would say that a lot.  I would also say that I would not want a person to understand.  So, while I desperately needed to speak to someone who understood, I also didn't want anyone to understand because that would mean they have gone through it.  This is the type of thoughts I would entertain in my head.

It is not like WD.  WD is horrible.  Akathisia is insidious.  You do become like a child again.  And, as grown adults, we cannot wrap our injured minds around this.  I felt embarrassed...a lot of shame.  As a parent, I couldn't show up as a parent.  I was showing up as a child.  My best friend would say to me 'you are not well, please show yourself compassion and understanding'.  But, my brain just kept pointing out all that I could no longer be at that time...especially as a parent...and, my kids are grown adults.  But, to me, in that state, they were still small children.

I had a very difficult time crying during that time.  I wanted to so very badly to release all the pent up energy in my body.  I think I was just scared stiff...in 'freeze' state.  It wasn't until things began to lessen in severity that I was able to release by crying.  It wasn't a real cathartic cry...but, it was some form of release.  I'm very glad to hear you are able to cry.  It is important.

I know you know this, but I will say it anyway.  It is a chemical fear.  Artificial.  And, dripping with insidious lies.  And, when you do not have the space in your head to entertain 'acceptance'...that's okay.  In those times, the theory is valid, but not available...until it is.  And, you'll know when it is.  A switch will be flipped, the space will be created in the mind again, and you can begin to use your tools.  It may not be your first rodeo, but in AKA, it can sure feel like your first rodeo.

Warmly,

F

 

[[Av...]]

2 minutes ago, [[F...] said:

No.  I do not feel that those who have not experienced Akathisia would understand.  I would say that a lot.  I would also say that I would not want a person to understand.  So, while I desperately needed to speak to someone who understood, I also didn't want anyone to understand because that would mean they have gone through it.  This is the type of thoughts I would entertain in my head.

It is not like WD.  WD is horrible.  Akathisia is insidious.  You do become like a child again.  And, as grown adults, we cannot wrap our injured minds around this.  I felt embarrassed...a lot of shame.  As a parent, I couldn't show up as a parent.  I was showing up as a child.  My best friend would say to me 'you are not well, please show yourself compassion and understanding'.  But, my brain just kept pointing out all that I could no longer be at that time...especially as a parent...and, my kids are grown adults.  But, to me, in that state, they were still small children.

I had a very difficult time crying during that time.  I wanted to so very badly to release all the pent up energy in my body.  I think I was just scared stiff...in 'freeze' state.  It wasn't until things began to lessen in severity that I was able to release by crying.  It wasn't a real cathartic cry...but, it was some form of release.  I'm very glad to hear you are able to cry.  It is important.

I know you know this, but I will say it anyway.  It is a chemical fear.  Artificial.  And, dripping with insidious lies.  And, when you do not have the space in your head to entertain 'acceptance'...that's okay.  In those times, the theory is valid, but not available...until it is.  And, you'll know when it is.  A switch will be flipped, the space will be created in the mind again, and you can begin to use your tools.  It may not be your first rodeo, but in AKA, it can sure feel like your first rodeo.

Warmly,

F

Thank you. 

Yes, although not my first rodeo it might as well be as it is so much more intense than I have ever experienced. It has also been extremely traumatizing. I never, ever expected to feel these symptoms again having been psyche med free for 10 years. To have it all return due to alcohol has been very hard to deal with. I never knew this was possible. I'd never heard of a setback until recently. 

I am extremely self critical, so when the aka terror hits it also triggers rumination about the events that led up to this. I start beating myself up about it and find myself having to deal with the thought that I brought this all on myself.

[[Fa...]]

@[Cr...] is a great wealth of knowledge with respect to the realities of setbacks.  I have no experience with setbacks.  I am still not off the drug.  It's wonderful to have that reassurance.  So many experience them.  We can educate ourselves until we are blue in the face and still find ourselves in a setback because there are an infinite number of reasons they can happen.  We can't control everything.  And, the importance of that knowledge is that you are not experiencing this from a place of WD.  That is your past.  And, setbacks, from all I have read and understand, have a much shorter timeline.  And, that is a really good thing.  It will be a blip in the overall timeline, although it may not feel like it in this moment.

I believe all of us on this site sit in a space of feeling as though we brought this all on ourselves...when the truth is we did not.  While sitting in terror, it's almost impossible to see that.  Please be kind to yourself.  I know it's feels like going against the grain.  When you need to be reminded over and over again, you will find that reminder here.  I look forward to the post you write where you announce that you have come out the other side of this...because it will happen.  The self-critic will be silenced...hopefully, to a greater degree than before this all started.  And, I feel that will happen as a result of gratitude for making it through.  Because you will....and, you are.    

 

[[Av...]]

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

@[Cr...] is a great wealth of knowledge with respect to the realities of setbacks.  I have no experience with setbacks.  I am still not off the drug.  It's wonderful to have that reassurance.  So many experience them.  We can educate ourselves until we are blue in the face and still find ourselves in a setback because there are an infinite number of reasons they can happen.  We can't control everything.  And, the importance of that knowledge is that you are not experiencing this from a place of WD.  That is your past.  And, setbacks, from all I have read and understand, have a much shorter timeline.  And, that is a really good thing.  It will be a blip in the overall timeline, although it may not feel like it in this moment.

I believe all of us on this site sit in a space of feeling as though we brought this all on ourselves...when the truth is we did not.  While sitting in terror, it's almost impossible to see that.  Please be kind to yourself.  I know it's feels like going against the grain.  When you need to be reminded over and over again, you will find that reminder here.  I look forward to the post you write where you announce that you have come out the other side of this...because it will happen.  The self-critic will be silenced...hopefully, to a greater degree than before this all started.  And, I feel that will happen as a result of gratitude for making it through.  Because you will....and, you are.    

Thank you so much for your kindness. You’ve made my eyes well up with this post. You cannot believe how much I needed to read something like this right now. 

[[Av...]]

You’ve all been so kind. Thank you all so much. 

[[Fa...]]

@[Av...]  You won't believe how much it helps my healing by being able to interact in this way, so thank you.