Dysautonomic reaction?

[[ro...]]

For 20 months since my horrible ct from a clonazepam prescription and subsequent poly drugging by drs who didn’t recognize withdrawal or any ill effects of benzo ct, I have experienced a horrific response to waking up and attempting to calm down. It’s hard to describe in words. I will try..

I sleep maybe 2-3 hours each night. It is not good sleep. I often just realize I’m awake around 2 am and wonder if I’ve even slept. Then like clockwork, my nervous system just begins to rev and go haywire, I think. I am flooded with mind racing worry, terror, and doom and the feeling like I need to figure out what is happening to me over and over and over rapidly. It doesn’t stop and only picks up steam. Heart rate, breathing, chest tightness, wheezing, complete internal restlessness and inner agitation. you name it. It all starts increasing rapidly at the same time. There is no real coping that helps. No deep breathing, no meditation or mindfulness that can even touch this experience. And it happens every single day when I wake no matter what I do, eat, think, or try. It’s only getting more intense and the after effects are lasting all day. I’m totally stuck and my life doesn’t exist any more.

this exacerbation of my nervous system also happens any time I try to calm my system during the day. Usually after I force down breakfast after a hellish morning I can sit down and attempt some basic breathing with my eyes closed. But without fail, as soon as my system is about to calm, or possibly rest like a healthy person’s would, I am electrocuted with these physical and mental issues like a bomb has gone off inside of me. The fear is ungodly. The physical response is the same, rapid everything, chest and stomach pain. Just total terror response. 
 

I don’t know what I am asking for. I don’t hear anyone else ever describe anything like this and it’s just so disheartening. I’m losing my ability to continue on like this. I don’t know where to go for help as I’ve seen every Dr and had so many tests. I don’t even feel that my description of this even touches on the true horror of the experience that I am plagued with. How do info on like this. It is worsening my health and growing in intensity. I’m at a loss.

Thanks for reading.

matt

 
 

[[No...]]

Hello @[ro...]. I don't have a solution and I really sorry for what are you dealing with but.. You are not alone. This one happens to me too from near 3 months. Maybe not exactly the same but close. Every night I am waking up from feeling like stabbing in the heart, absolute horror and fear. And this stabbing repeats until I finally get up from the bed. Like dying 10-20 times every night from stabbing, just brutal! 

So, what I learned is very much like you did - nothing helps. The only relief was one night when I've got really angry for this torture. The anger was the response which calmed me down?!

I think it's all an anxiety and it gets worse because there is no relief even through the day. Now I am in state to fear going to bed and this will make things worse. I am stuck like you and don't have any clue what to do with this panic. 

Hope we will find a way out, Matt.

[[wi...]]

42 minutes ago, [[r...] said:

For 20 months since my horrible ct from a clonazepam prescription and subsequent poly drugging by drs who didn’t recognize withdrawal or any ill effects of benzo ct, I have experienced a horrific response to waking up and attempting to calm down. It’s hard to describe in words. I will try..

I sleep maybe 2-3 hours each night. It is not good sleep. I often just realize I’m awake around 2 am and wonder if I’ve even slept. Then like clockwork, my nervous system just begins to rev and go haywire, I think. I am flooded with mind racing worry, terror, and doom and the feeling like I need to figure out what is happening to me over and over and over rapidly. It doesn’t stop and only picks up steam. Heart rate, breathing, chest tightness, wheezing, complete internal restlessness and inner agitation. you name it. It all starts increasing rapidly at the same time. There is no real coping that helps. No deep breathing, no meditation or mindfulness that can even touch this experience. And it happens every single day when I wake no matter what I do, eat, think, or try. It’s only getting more intense and the after effects are lasting all day. I’m totally stuck and my life doesn’t exist any more.

this exacerbation of my nervous system also happens any time I try to calm my system during the day. Usually after I force down breakfast after a hellish morning I can sit down and attempt some basic breathing with my eyes closed. But without fail, as soon as my system is about to calm, or possibly rest like a healthy person’s would, I am electrocuted with these physical and mental issues like a bomb has gone off inside of me. The fear is ungodly. The physical response is the same, rapid everything, chest and stomach pain. Just total terror response. 
 

I don’t know what I am asking for. I don’t hear anyone else ever describe anything like this and it’s just so disheartening. I’m losing my ability to continue on like this. I don’t know where to go for help as I’ve seen every Dr and had so many tests. I don’t even feel that my description of this even touches on the true horror of the experience that I am plagued with. How do info on like this. It is worsening my health and growing in intensity. I’m at a loss.

Thanks for reading.

matt

 
 

I identify completely. I’m right there with you. ❤️

[[wi...]]

6 minutes ago, [[N...] said:

Now I am in state to fear going to bed and this will make things worse.

Yep. I dread even walking into my bedroom now and seeing my bed, just any reminder of the cycle signals anxiety.

 

[[No...]]

One thing is in my mind and maybe I must test this. I think to check out if I have developed sleep apnea. This condition relates to these symptoms. When the brain is missing oxygen then wakes the body with panic attacks like emergency. Who knows.. 

[[ro...]]

17 minutes ago, [[N...] said:

One thing is in my mind and maybe I must test this. I think to check out if I have developed sleep apnea. This condition relates to these symptoms. When the brain is missing oxygen then wakes the body with panic attacks like emergency. Who knows.. 

what I am experiencing is most certainly not sleep apnea related.

[[wi...]]

20 minutes ago, [[N...] said:

One thing is in my mind and maybe I must test this. I think to check out if I have developed sleep apnea. This condition relates to these symptoms. When the brain is missing oxygen then wakes the body with panic attacks like emergency. Who knows.. 

 I have a CPAP machine and it doesn’t help things at all!! Mine is not sleep apnea. 

[[Re...]]

1 hour ago, [[r...] said:

For 20 months since my horrible ct from a clonazepam prescription and subsequent poly drugging by drs who didn’t recognize withdrawal or any ill effects of benzo ct, I have experienced a horrific response to waking up and attempting to calm down. It’s hard to describe in words. I will try..

I sleep maybe 2-3 hours each night. It is not good sleep. I often just realize I’m awake around 2 am and wonder if I’ve even slept. Then like clockwork, my nervous system just begins to rev and go haywire, I think. I am flooded with mind racing worry, terror, and doom and the feeling like I need to figure out what is happening to me over and over and over rapidly. It doesn’t stop and only picks up steam. Heart rate, breathing, chest tightness, wheezing, complete internal restlessness and inner agitation. you name it. It all starts increasing rapidly at the same time. There is no real coping that helps. No deep breathing, no meditation or mindfulness that can even touch this experience. And it happens every single day when I wake no matter what I do, eat, think, or try. It’s only getting more intense and the after effects are lasting all day. I’m totally stuck and my life doesn’t exist any more.

this exacerbation of my nervous system also happens any time I try to calm my system during the day. Usually after I force down breakfast after a hellish morning I can sit down and attempt some basic breathing with my eyes closed. But without fail, as soon as my system is about to calm, or possibly rest like a healthy person’s would, I am electrocuted with these physical and mental issues like a bomb has gone off inside of me. The fear is ungodly. The physical response is the same, rapid everything, chest and stomach pain. Just total terror response. 
 

I don’t know what I am asking for. I don’t hear anyone else ever describe anything like this and it’s just so disheartening. I’m losing my ability to continue on like this. I don’t know where to go for help as I’ve seen every Dr and had so many tests. I don’t even feel that my description of this even touches on the true horror of the experience that I am plagued with. How do info on like this. It is worsening my health and growing in intensity. I’m at a loss.

Thanks for reading.

matt

 
 

@[ro...] I hear you and understand this from personal experience as someone who has suffered with akathisia for many months. I have heard many other akathisia patients describe what you are describing. 

[[ro...]]

12 minutes ago, [[R...] said:

@[ro...] I hear you and understand this from personal experience as someone who has suffered with akathisia for many months. I have heard many other akathisia patients describe what you are describing. 

I have struggled with akathisia this whole time. Mine is a mental agitation and insanity. Some pacing. Lots of up and down. It’s hell. Thank you. 

[[ro...]]

17 minutes ago, [[R...] said:

@[ro...] I hear you and understand this from personal experience as someone who has suffered with akathisia for many months. I have heard many other akathisia patients describe what you are describing. 

Do you know how I can better manage this or help this to stop? I don’t take any drugs accept melatonin for sleep. I’m so scared of everything. I’m really at the end of my threshold. 

[[PE...]]

12 minutes ago, [[r...] said:

Do you know how I can better manage this or help this to stop? I don’t take any drugs accept melatonin for sleep. I’m so scared of everything. I’m really at the end of my threshold. 

I totally get what you going through I was in really bad way with akathisia and totally unable to relax in any way.

Unfortunately i didn't find any coping for it. I stumbled around 14 hours a day in my small apartment. Time! Is what will kill it. My second week in acute my mother gave me a couple of strong painkillers with some opioid in them. Wow it worked for a few hours! But turning in to opioids is hardly a good choice.

All though heroine addicts have a week or so wd and we have months/years!

 

Ok edit i read it’s 20 months since you CT! 

That's a awful long time..

Sorry about this.

 

Edited April 10 by [PE...]

[[wi...]]

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

I totally get what you going through I was in really bad way with akathisia and totally unable to relax in any way.

Unfortunately i didn't find any coping for it. I stumbled around 14 hours a day in my small apartment. Time! Is what will kill it. My second week in acute my mother gave me a couple of strong painkillers with some opioid in them. Wow it worked for a few hours! But turning in to opioids is hardly a good choice.

All though heroine addicts have a week or so wd and we have months/years!

Ok edit i read it’s 20 months since you CT! 

That's a awful long time..

Sorry about this.

@[PE...]Didn’t I hear you say in another post that seroquel helped you? 

Edited April 10 by [wi...]

[[ro...]]

This is what is so discouraging for me. 20 months off. I felt the moment this insane injury happened a few days after the ct. like my brain just ripped or was shocked. I just don’t seem to get better. The other symptoms i have along with this are lengthy and insane. Very similar to the list @[Re...] posted in her most recent post. Plus a deep depression due to the loss of my life, career, health, strength and having a beautiful 5 year old son that I can’t be with in the way a father needs to be with his family. I’m just praying this eases up sometime. Sooner than later. 
 

thank you for the comments

[[PE...]]

1 minute ago, [[w...] said:

@[PE...]Didn’t I hear you say in another post that seroquel helped you? 

Yes!! BUT. After that i found out that it can have a really bad wd on it's own. So I don't know if I can suggest it to someone. I didn't take it for a couple of days and my tinnitus went crazy! I don't know if it's benzo withdrawal coming up to the surface again or a effect of Seroquel!

 

[[wi...]]

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

don't know if it's benzo withdrawal coming up to the surface again or a effect of Seroquel!

It’s probably a mix of both since it’s all about your nervous system reacting from the original injury.

[[Bo...]]

Have this as well and got forced mirt and well have to now taper in this state and not know what is coming from where.

keep going and lean on coaches and this place for support. Longer you’re off it’s going to get better just the when is what we don’t ever know.

hugs and know there are some of us in your shoes and I did a 3yr taper and aka slammed me after. Brutal and inhumane for those of us who get it this bad. I’ll never understand it bc we have the will to fight but the length of time ppl have to endure aka is not ok.

it will go though so please hang in there and just try to take that day- looking ahead is beyond terrifying.

I’m so so sorry you’re in this spot and hope things improve greatly soon.

[[ro...]]

1 minute ago, [[B...] said:

Have this as well and got forced mirt and well have to now taper in this state and not know what is coming from where.

keep going and lean on coaches and this place for support. Longer you’re off it’s going to get better just the when is what we don’t ever know.

hugs and know there are some of us in your shoes and I did a 3yr taper and aka slammed me after. Brutal and inhumane for those of us who get it this bad. I’ll never understand it bc we have the will to fight but the length of time ppl have to endure aka is not ok.

it will go though so please hang in there and just try to take that day- looking ahead is beyond terrifying.

I’m so so sorry you’re in this spot and hope things improve greatly soon.

Thank you from the bottom of my heart. I was on mirt early on and felt it just made me worse. I was on for months. Tapered it already as I already felt so insanely horrific I didn’t notice any real addition to my suffering. I just couldn’t in my mind be on anything that could be adding to the insanity I have been experiencing. I try to take it moment by moment each day but the loss and the inability to think or function is more than overwhelming. I’m worried. Thank you again.

[[Re...]]

1 hour ago, [[r...] said:

Do you know how I can better manage this or help this to stop? I don’t take any drugs accept melatonin for sleep. I’m so scared of everything. I’m really at the end of my threshold. 

@[ro...] I'm glad you revealed you are taking melatonin. I was put on that as well and after getting off the Seroquel and did not realize it was making the akathisia worse until a member of my care team pointed out that it could be exacerbating the condition. I also had to stop an eye drop I didn't realize worked on my nervous system. How much melatonin are you taking? Are you on any other hormones? I was taking less than 5mg of melatonin.

I managed to get through this with lots of warm baths, cold showers, XL ice packs on my chest and back, heating pads, and the right social support. I turned to people in the community like Angie Peacock and Melissa Boutilier who helped me immensely because they had gone through this and were off of all drugs. Sometimes I would spend hours on the phone with other healing buddies while I paced or in the middle of the night I had people I could call or text to pass the time. I did this for 14 months every single day so I understand the longevity element. I do wonder if the melatonin could be lengthening the process. Anything we take with akathisia has the possibility of doing that. Angie Peacock has a withdrawal group where many people have akathisia and there is a lot of support there and maybe other helpful resources for you. I know another buddy who discovered mold in their house was exacerbating akathisia and once the mold was eradicated this person's akathisia went. So not sure if you have checked your living environment.

Edited April 10 by [Re...]

[[wi...]]

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

Sometimes I would spend hours on the phone with other healing buddies while I paced or in the middle of the night I had people I could call or text to pass the time

In aka I’m frantic, did you have “normal” conversation or was it anxious and fearful stuff you just had to vent? I’m afraid to even be on a phone call because I’m so  panicked in my head. 
you must have had amazing people. 

[[ro...]]

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

I'm glad you revealed you are taking melatonin. I was put on that as well and after getting off the Seroquel and did not realize it was making the akathisia worse until a member of my care team pointed out that it could be exacerbating the condition. I also had to stop an eye drop I didn't realize worked on my nervous system. How much melatonin are you taking? Are you on any other hormones? I was taking less than 5mg of melatonin.

I managed to get through this with lots of warm baths, cold showers, XL ice packs on my chest and back, heating pads, and the right social support. I turned to people in the community like Angie Peacock and Melissa Boutilier who helped me immensely because they had gone through this and were off of all drugs. Sometimes I would spend hours on the phone with other healing buddies while I paced or in the middle of the night I had people I could call or text to pass the time. I did this for 14 months every single day so I understand the longevity element. I do wonder if the melatonin could be lengthening the process. Anything we take with akathisia has the possibility of doing that. Angie Peacock has a withdrawal group where many people have akathisia and there is a lot of support there and maybe other helpful resources for you. I know another buddy who discovered mold in their house was exacerbating akathisia and once the mold was eradicated this person's akathisia went. So not sure if you have checked your living environment.

My home is clear. I take 1mg child’s chewable melatonin. I sleep Maybe 2 hours night. I guess I will attempt to cut that out as well. Crazy. Spent the first 40 years of my life eating and taking whatever without a thought. Now this. I’ve spoke to a lot of coaches and others. I just can’t afford it any longer. Just lost my career. Etc etc… I have good family support but this is ungodly wear and tear on everyone. The guilt and pain I feel is endless. My own hormones have taken a huge hit. They just don’t seem to be functioning at all. Anyway. Thank you. 

[[...]]

17 hours ago, [[r...] said:

For 20 months since my horrible ct from a clonazepam prescription and subsequent poly drugging by drs who didn’t recognize withdrawal or any ill effects of benzo ct, I have experienced a horrific response to waking up and attempting to calm down. It’s hard to describe in words. I will try..

I sleep maybe 2-3 hours each night. It is not good sleep. I often just realize I’m awake around 2 am and wonder if I’ve even slept. Then like clockwork, my nervous system just begins to rev and go haywire, I think. I am flooded with mind racing worry, terror, and doom and the feeling like I need to figure out what is happening to me over and over and over rapidly. It doesn’t stop and only picks up steam. Heart rate, breathing, chest tightness, wheezing, complete internal restlessness and inner agitation. you name it. It all starts increasing rapidly at the same time. There is no real coping that helps. No deep breathing, no meditation or mindfulness that can even touch this experience. And it happens every single day when I wake no matter what I do, eat, think, or try. It’s only getting more intense and the after effects are lasting all day. I’m totally stuck and my life doesn’t exist any more.

this exacerbation of my nervous system also happens any time I try to calm my system during the day. Usually after I force down breakfast after a hellish morning I can sit down and attempt some basic breathing with my eyes closed. But without fail, as soon as my system is about to calm, or possibly rest like a healthy person’s would, I am electrocuted with these physical and mental issues like a bomb has gone off inside of me. The fear is ungodly. The physical response is the same, rapid everything, chest and stomach pain. Just total terror response. 
 

I don’t know what I am asking for. I don’t hear anyone else ever describe anything like this and it’s just so disheartening. I’m losing my ability to continue on like this. I don’t know where to go for help as I’ve seen every Dr and had so many tests. I don’t even feel that my description of this even touches on the true horror of the experience that I am plagued with. How do info on like this. It is worsening my health and growing in intensity. I’m at a loss.

Thanks for reading.

matt

 
 

I had this as well, plus nerve stings, muscle spasms and chills. It got better! You are not the only one experiencing this. 

Breathing exercises, meditation and mindfullness didn't help me either. It just exacerbated that there was something scary that I needed to calm down from.

What did help some was D.A.R.E.: Defuse, Allow, Run towards, Engage. In essense treating it as something that is not *me*, and that the anxiety is causing the anxiety. It might not help for you, but saying that it is a magical treatment. But I do think that most people can find at least some relief from thinking about anxiety as something separate from themselves.

Oh, and mine *did* improve. I still wake up at night, but without anxiety. 

D.A.R.E means:

Defuse

This step involves separating yourself from the anxiety-provoking thoughts. It encourages you to see anxiety as a passing sensation rather than a constant threat. Techniques may include acknowledging and observing anxious thoughts without becoming entangled in them.

Allow

Instead of resisting or fighting against anxiety, this step encourages you to allow the anxious feelings to be present without judgment. Allow the feelings and sensations of anxiety to just run through you. Don’t fight it, the more you fight it the stronger the feelings become. Accept the feelings. Allow the body to accept the anxious feelings from a fast heartbeat to that all familiar dizziness. By accepting the anxiety, you can reduce the struggle against it, which may, paradoxically, lessen its intensity.

Run Toward

Rather than avoiding situations that trigger anxiety, this step involves actively engaging with them. Facing fears gradually helps desensitize you to anxiety-inducing situations, promoting a sense of control and mastery. A bonus that comes with running towards your anxiety, is that when you challenge anxiety such as saying, “bring it on, that’s all you got?” it’s an automatic kill switch during a panic attack. Your mind physically can’t create anxiety on your demand.

Engage

Engaging in activities and behaviors that align with personal values is emphasized in this step. It encourages you to live a full life despite anxiety, promoting a focus on meaningful and fulfilling activities. The more engaged your mind is, the less anxiety has the ability to rear its ugly head to strongly.

 

[[ro...]]