Feel like this will never end - need support

[[Re...]]

 

I am so tired of telling my story. I am now 100 percent prescription drug, supplement, and anything else free for almost three weeks. I took everything as directed by physicians. I have been in withdrawal every single day for 16 months, including tolerance withdrawal. Last Sept, I was ripped off a benzo too quickly, didn't sleep for two weeks, got sent to a psych ward, and put on Seroquel to "calm my nervous system" by doctors who clearly did not understand benzo withdrawal.

Little did I know I had akathisia from the improper benzo "detox" and the Seroquel made that and everything else worse. I have had more severe symptoms than I can count while tapering it and in benzo wd, but my worst symptom by far has been the akathisia. I have been dealing with it severely for 8 months now. 8 months. Tapering the Seroquel, things seemed to start improving in July in that I started sleeping somehow and had weeks where I didn't pace. Although the internal akathisia did not go away and made me feel like I had the wind punched out of me 24/7.

The pacing has struck at all hours of the day and night with no predictable pattern. It can start at 11:30 pm and go to 11:30 am. It can jolt me out of my sleep at 2:30 am and I can pace until 2:30 pm. Tonight, I was trying to sleep and could not because I felt like I was being electrocuted when I laid down. I forced falling asleep by rubbing my scalp and shoulders myself, then woke up 1.5 hours later with heart palps and a hot flash. (I have had these hot flashes and heart palps only in the middle of the night for months now.) I have been up and pacing on and off since 12:30 am. Extreme sleepless nights started happening again this week after sleeping pretty well for 14 days. I was awake for 60 hours this week and slept only 5 hours over that time. Then after 60 hours, I crashed for 12 hours of broken sleep. This is outside of the pattern I have had while tapering the Seroquel, and it scares me since I am now off. I refuse to take any other drug of any kind ever again. So those options are off the table completely, which leaves me facing suffering without any help. Not that what I tried in benzo wd helped anyway. I have been paradoxical to everything.
To say I am traumatized by this experience is a total understatement. This week's spike of symptoms after hoping I was turning a corner has put me back into an acute mindset if that makes sense. I think, how can I go on like this? How can I survive this? I see other people living, and I am beside myself and hopeless. Akathisia keeps me housebound and totally debilitated. I live such a sad life. There is nothing I can do about akathisia. I know this. It is a terrible existence with no predictable timeline. I have utilized a hired companion to get me through the days, but I cannot have someone 24/7 because I cannot pay for it. It is too expensive but would help me if I could do it. I have already spent so much money -- hundreds of thousands of dollars in medical bills since I was put on these drugs in 2020. My family is completely spent on this on all levels. They love me, but this is exhausting for them. The DP/DR I have from typing this...it's intense when I think of what I have been through. It makes me feel like I won't truly emotionally heal from this. On the days that I have some physical relief, I feel mentally better. The two go hand in hand for me.
I am writing all of this because I am up, alone in the middle of the night again. I do not understand this new pattern, and I am afraid that it will continue to get worse or this will be the new norm for weeks or months. My coach tells me I just don't know; things could be gone tomorrow. I know that is true, but when they are spiking so badly like this, it scares me. I try to calm my system with warm baths with coconut oil and physical therapy massage treatments, which are the only things that work somewhat. The last time this happened, I was in severe akathisia day in and day out for months. I cannot withstand another months-long streak of this. I try to stay in the day, but this is all so terrifying and unpredictable. It is like a s**t storm that tosses you around like a rag doll. Not sleeping is a higher form of torture when you already have severe symptoms. Speaking of other symptoms, here is what I am still dealing with:

Acne
Body Odor
Sadness
Dry Skin
Ear popping
Executive dysfunction
Fatigue
Hyperacusis
Inner vibration
Monophobia
Mood Swings
Nose burning
Numb hands
PTSD from this
Paresthesia all over / pine needles feeling like pressed into skin
Chemical, food, light sensitivities
Frequent urination
Frequent nose blowing
SIs
Tinnitus
TMJ pain

Some of these things on the list, like body odor, I am not concerned about. My worst symptoms are akathisa followed by hyperacusis and tinnitus then inner vibration.

I wish I had more hope to share, buddies, but I am, again, at the end of a rope here. I would appreciate any support you can give. This is one of those times that I wonder how I can survive this. I do not want to be on the forums again, day in and day out. I cannot hear any more horror stories as I know everyone in the book, it seems. There is more suffering in this community than I even knew was possible for a human experience. I also know there is a lot of healing, too. But getting to the healing is the difficult part, as those of us who have suffered from severe BIND know firsthand.

I had really hoped that I was turning a corner enough to work from home a bit after Labor Day. I really want to have some semblance of a life again and not have pacing be my main form of activity.

Much love to all of you.

 

 

[[al...]]

Did you have Akathesia while on the benzos?  I was taken off a benzos too quickly and developed Akathesia . The only thing that saved me was going back on the benzos and ever so very slowly tapering off it.  If your Akathesia started from coming off the benzos too quickly then maybe you should consider a reinstatement and a very slow multi year taper.  I hate these drugs too but tapering with a calm body is better than living with akathesia

[[Re...]]

6 hours ago, [[a...] said:

Did you have Akathesia while on the benzos?  I was taken off a benzos too quickly and developed Akathesia . The only thing that saved me was going back on the benzos and ever so very slowly tapering off it.  If your Akathesia started from coming off the benzos too quickly then maybe you should consider a reinstatement and a very slow multi year taper.  I hate these drugs too but tapering with a calm body is better than living with akathesia

Thank you but I would never reinstate. It is far too risky. I also never want to taper another drug in my life. I am glad that it worked for you. You are one of the few I have heard that it actually works for. To get through two years of tapering, my hat is off to you. That takes tremendous courage and strength. Especially after experiencing akathisia.

I got akathisia from being ripped off 1.5 mg of Ativan in ten days then put on Seroquel "for sleep" which made it worse. I am now almost three weeks off the Seroquel. I suffered hard to get here. Mentally, physically, and emotionally dealing with gaslighting and getting off the mental health merry-go-round doctors kept trying to pull me back on to. I am 100 percent drug and supplement-free and staying that way.

There is no medical solution for what I am dealing with. I am seeking social support to get through this since my goal is to stay off of everything.

[[Bo...]]

I am so sorry you are dealing with this. I know how hard it is. What help me was acceptance. I to am having a rough time. I will be off K in two days. I’m a little scared. 

[[Je...]]

Quote

 

@[Re...] Congratulations for three weeks off! I'm sorry you are having such a rough go of it - the akathisia, tinnitus, and hyperacusis - but look at what you've accomplished! I have to be honest; I haven't experienced these specific symptoms besides tinnitus, which I've had for a long time. (The tinnitus is definitely worse during my taper, but mostly I just try to ignore it.) I wish I had some magical insights. I want to offer my support, though. This. Is. Hard. I am sending you posivibes for healing and hope that your symptoms abate. You're not alone - there is so much suffering. I'm hoping that the worst is behind you and now you are in recovery mode. 

[[Sw...]]

Remember how FAR you HAVE come. and the seroquel you said you're three weeks off, right? That is definitely attributing to this spike but it is going to get so much better! In the depths of suffering no one can say anything to make this go away or better for you, BUT, remind yourself, even make a list of all you HAVE come through. You will NOT be stuck this way! The body is designed to heal and yours will... 

[[Re...]]

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

Remember how FAR you HAVE come. and the seroquel you said you're three weeks off, right? That is definitely attributing to this spike but it is going to get so much better! In the depths of suffering no one can say anything to make this go away or better for you, BUT, remind yourself, even make a list of all you HAVE come through. You will NOT be stuck this way! The body is designed to heal and yours will... 

@[Sw...]Thank you for this wonderful message of support. It will be three weeks off this coming Tuesday. In exactly two weeks, I will be one year off of Ativan. I appreciate your message very much. I will go to bed on this note and this note only.

[[Re...]]

2 hours ago, [[J...] said:

@[Re...] Congratulations for three weeks off! I'm sorry you are having such a rough go of it - the akathisia, tinnitus, and hyperacusis - but look at what you've accomplished! I have to be honest; I haven't experienced these specific symptoms besides tinnitus, which I've had for a long time. (The tinnitus is definitely worse during my taper, but mostly I just try to ignore it.) I wish I had some magical insights. I want to offer my support, though. This. Is. Hard. I am sending you posivibes for healing and hope that your symptoms abate. You're not alone - there is so much suffering. I'm hoping that the worst is behind you and now you are in recovery mode. 

I appreciate your support. It means a lot. The kindness of "virtual strangers" who all share in a similar experience can be the magical insight we all need.

[[Co...]]

On 03/09/2023 at 00:17, [[B...] said:

I am so sorry you are dealing with this. I know how hard it is. What help me was acceptance. I to am having a rough time. I will be off K in two days. I’m a little scared. 

Welcome to BenzoBuddies, @[Bo...]

[[be...]]

On 02/09/2023 at 17:17, [[B...] said:

I am so sorry you are dealing with this. I know how hard it is. What help me was acceptance. I to am having a rough time. I will be off K in two days. I’m a little scared. 

@[Bo...] Welcome to BB, and I like that you have started out helping others, I think we gain, when we give to others. I know that walking off of a drug is hard, but one day you will look back and think how glad you are to be off. I believe that "Acceptance" of the good and the very bad, is key to our success, there is much we cannot control, but we can control our thoughts about things. Stay Strong. 💖Peace and Healing.

 

"Acceptance doesn't mean resignation; it means understanding that something is what it is and that there's got to be a way through it."

Michael J. Fox

 

[[Pa...]]

On 02/09/2023 at 16:17, [[B...] said:

I am so sorry you are dealing with this. I know how hard it is. What help me was acceptance. I to am having a rough time. I will be off K in two days. I’m a little scared. 

Hello @[Bo...], welcome to BenzoBuddies,

It sounds like you’re getting close, what is your current dose and how long have you been tapering?  I didn’t taper but I’ve noticed most members experience pretty much the same symptoms when they jump, they can ratchet up in intensity a bit but for the most part, it’s more of the same for a couple of weeks at least.

We’re glad you found us, I hope you’ll start a thread of your own so we can learn your story.

Pamster

[[ro...]]

Hey Rebecca. I’m sorry you are going through this Hell. I am too. I don’t have the pacing, but I have extreme internal Akathisia that is hard for me to even describe. I am 14 months out from a detox 7 day taper from a 15 year prescription to clonazepam.  I have all the same symptoms as you except for pacing. The agitation and internal restlessness are so intense tho. I cant be still for long and I only sleep 2-4 hours a night if I’m lucky. How old are you? If you don’t mind me asking. I’m always here if you need or. Want to talk. 
matt