Please Pray for Me & Send Good Energy + Hope

[[Fa...]]

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

How long have you tried holding? I’m working with OHSU team that is doing benzo research as well as Dr. Horowitz, Chris Paige and some others. They are saying indefinite hold, until symptoms manageable. Maybe 2 years. I’m in tolerance withdrawal as well. 

How do you feel about that?  How long have you been holding so far, mcat?  And, do you mind if I ask you how long you were on your benzo and which one?

[[So...]]

@[Fa...] oh yeah it has been brutal.  I decided to not reinstate once I found out bcuz I didn't want to kindle again.  So I took about 3 weeks after that to taper off the tiny bit I still had in me. 

@[mc...] my best advice to you sincerely from my heart take into what you want first & foremost into consideration.  You know best.  How do they have your doses split up during the day if you are in tolerance?  I personally started doing cuts with akathisia & in tolerance but I'm just really stubborn & was not going to stay on the benzo.

 

[[Fa...]]

@[mc...]  Sorry...I held for two months.  Forgot to answer your question.

[[So...]]

Yeah I held for like 3 months before I had that error occur.  I didn't stablize & I was getting really pissed off.

[[mc...]]

Just now, [[F...] said:

How do you feel about that?  How long have you been holding so far, mcat?  And, do you mind if I ask you how long you were on your benzo and which one?

I get pretty nervous about it. Little is known about benzos but they know more than most. I have been holding 4 months. I know there has been a lot of improvement but the suffering is still so great that it’s hard to see. I was on klonopin .125 for 15 years. It was upped to .5 during pandemic. I had a reaction to vaccine. Was given way too many meds. Then suspected serotonin syndrome. Than more drugs. Klon. Upped to 1+. Kept getting sicker. I had never had a problem adjusting klon. Dose before and was never aware any of this could happen. Was told to stop taking klon. Without taper. I thought I would taper over a few days. Made it to .25 and started hallucinating. Was told couldn’t be from stopping k. Symptoms continued to get horrific. Was put on tonazapam for sleep. Still getting sicker. Was put in Hospital where they did not recognize what was going on. They ctd me Off of tonazapam. Later they put me in 3 mg. Ativan and Prozac. I was a complete basket case by then. I eventually figured out what happened to me after researching Akathisia but still no doctor guidance and thought I had to get off drug quickly to get better. So I started Ashton rate. People kept telling me to push through. Hospitalized several times with heart rate and blood pressure problems, collapsing legs, etc. was finally told to stop tapering. 
so this crap has been going on 2 years. Before I was an extremely busy mom and high school teacher. 

[[mc...]]

13 minutes ago, [[S...] said:

@[Fa...] oh yeah it has been brutal.  I decided to not reinstate once I found out bcuz I didn't want to kindle again.  So I took about 3 weeks after that to taper off the tiny bit I still had in me. 

@[mc...] my best advice to you sincerely from my heart take into what you want first & foremost into consideration.  You know best.  How do they have your doses split up during the day if you are in tolerance?  I personally started doing cuts with akathisia & in tolerance but I'm just really stubborn & was not going to stay on the benzo.

 

 

[[mc...]]

Just now, [[m...] said:

 

They are split up 3 times a day. They know the drug isn’t going to provide relief from anxiety again but trying to stop the severe withdrawals which are much worse than the tolerance withdrawals were. 

[[So...]]

Oh @[mc...] thank you for sharing your story & am so very sorry to hear your long & hard story.  You are such a warrior for making it thru all of this.  It sounds like your story has even more twists & turns than mine.  

How long were you off the benzo before when they put you on Ativan?  I'm so happy that you have good resources now & I am glad you have found us & have knowledge.  Isn't it so sad how little they know about the pills they put us on? I am also happy to hear about your improvements.  Even if they are small, that still means something!  So maybe the holding is working for you 😀

 

Three times a day is how much I was dosing klonopin while I was on so that sounds pretty good.  Are they looking to try you on any other meds to help the akathisia?  Do you have pacing aka or just mental?

[[mc...]]

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

Oh @[mc...] thank you for sharing your story & am so very sorry to hear your long & hard story.  You are such a warrior for making it thru all of this.  It sounds like your story has even more twists & turns than mine.  

How long were you off the benzo before when they put you on Ativan?  I'm so happy that you have good resources now & I am glad you have found us & have knowledge.  Isn't it so sad how little they know about the pills they put us on? I am also happy to hear about your improvements.  Even if they are small, that still means something!  So maybe the holding is working for you 😀

 

Three times a day is how much I was dosing klonopin while I was on so that sounds pretty good.  Are they looking to try you on any other meds to help the akathisia?  Do you have pacing aka or just mental?

I’m on Valium now. Sometimes I still having pacing but basically my body is just in constant motion in some way with the mental. They’ve tried several meds for aka but not successful. The hydroxyzine seems to work some but I really am afraid to take it with the serotonin syndrome history. 

[[mc...]]

Just now, [[m...] said:

I’m on Valium now. Sometimes I still having pacing but basically my body is just in constant motion in some way with the mental. They’ve tried several meds for aka but not successful. The hydroxyzine seems to work some but I really am afraid to take it with the serotonin syndrome history. 

I never made it below the .25. They just switched it over to the Ativan. 

[[So...]]

@[mc...] while I don't have much advice for you on what to do & it seems like you're already in good hands w the med management, I just need you to know that this will end, okay?  You are so strong & keep fighting please.  I know it feels like forever & you're already crawling thru glass while being cut up, but keep going ❤️  staying alive longer than this lasts is the only task.

[[Fa...]]

@[mc...]  I have been through this decision making process over and over again.

First...you have been through a lot...and, you and I are injured.  Actually, the three of us are so similar with our injuries.  I am so sorry you went through all of that.  And, I know where you sit now with all of this.  I am hearing more and more stories, and they all seem to be complicated and the incompetency shown from prescribers is absolutely disgusting.  

I am better now than I was when I was holding.  Now, there could be different reasons for this...but, I am better. I was pacing up to 17 hours a day with a very bad vocal tic that accompanied my episodes.  I was hysterical, suicidal often, delusional.  My sleep was worse than now.  But, there are other factors at play, too.  So, I am going with my gut on this.  Which is what we each have to do.  Listen to how we feel.  And, there is not just one way through this.  I have changed my mind many times.  I work with a coach...she sees how things are with me...her thoughts on the best approach change because this process is not a normal one.  It's unpredictable and illogical.  First, I was going to rapid taper...I thought about CT...then, I decided to try to taper at a reasonable pace again.  That's where I am now.  But, it's brutal.

Prior to my deciding to come off, I was waking up with terror, I had electricity going through my legs, my face was twitching, my back had spasms.  I know how I was before I even began to taper.  So, it's been a tough decision for me...add all the mistakes on my part and on the part of others and the AKA...I felt hopeless.  Still do often.  I've had this drug in my system for a total of almost 23 years.  I would like it out.  I hope I am able to do it.  I will take it day by day, and I am always open to change things if it seems that is what is necessary.  Just have to find our way out.   

[[mc...]]

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

@[mc...] while I don't have much advice for you on what to do & it seems like you're already in good hands w the med management, I just need you to know that this will end, okay?  You are so strong & keep fighting please.  I know it feels like forever & you're already crawling thru glass while being cut up, but keep going ❤️  staying alive longer than this lasts is the only task.

Thank you. They are the new experts but I just hope they know what they’re doing because even if there have been improvements, having such insufferably symptoms 4 months into a hold is really difficult. That’s why if I felt comfortable taking something to dull this down a little I would feel better. They all say they are confident that I will stabilize. I would really like to be reinstated but I hear so many horror stories about that. The doctors said they won’t do it anyway because they think I’m out of medical danger now. I’m completely non functional though. And my beloved dog who never left my side through this died suddenly last week so I’m sure that has set me back some. This is starting to sound like a country song that nobody would want to listen to. I’ll stop. 

[[So...]]

Aww @[Fa...] you are such a sweet person despite your suffering.  We all are, actually.  Such a shame this happens to the sweetest nicest people.  I have a friend with aka who I talk to daily & she is literally an angel & it makes me so mad that this happens to people who have not even done anything to deserve it. 

 

I am so happy that you are feeling better now & no longer pacing that much- progress!  Also by no means do I think anyone should follow in my shoes & cold turkey, I just want to 100% make that known.  I almost died before I found out what was happening, & I surely would not have followed thru with it if I would have known, I would have been too scared. 

 

I am working with a coach as well & it's so nice to have the reassurance & aide from someone who has been there done that. 

 

I wanted to ask if anyone else has this symptom.  I am waking up everyday to burning in my whole body & being super nauceus plus it feels like all my muscles are locked up.  It lasts about 3-4 hours in the morning & it really scares me.

[[Fa...]]

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

Thank you. They are the new experts but I just hope they know what they’re doing because even if there have been improvements, having such insufferably symptoms 4 months into a hold is really difficult. That’s why if I felt comfortable taking something to dull this down a little I would feel better. They all say they are confident that I will stabilize. I would really like to be reinstated but I hear so many horror stories about that. The doctors said they won’t do it anyway because they think I’m out of medical danger now. I’m completely non functional though. And my beloved dog who never left my side through this died suddenly last week so I’m sure that has set me back some. This is starting to sound like a country song that nobody would want to listen to. I’ll stop. 

My heart goes out to you with your dog, mcat.  Of course that would set you back.  And, do not stop writing...this whole site is a country song no one would want to hear/experience.  We need to get things out and allow others to support us.  Thank you for sharing.  I do hope you notice more and more improvements as time goes by.

 

[[So...]]

Yeah no @[mc...]please do not stop sharing!  Believe it or not it helps other people when you share too just to know you are not alone.  Share whatever & however much you want if it helps!  I am so sorry to hear about your dog as well- I have two dogs & I have had others that have passed so I understand the pain in that.  As faith said, I'm sure that could trigger a set back.  The flare up I'm in right now w my akathisia started when I went to my grandmother's house two weeks ago & all she did was scream at me & told me I was just having cravings.

[[mc...]]

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

Yeah no @[mc...]please do not stop sharing!  Believe it or not it helps other people when you share too just to know you are not alone.  Share whatever & however much you want if it helps!  I am so sorry to hear about your dog as well- I have two dogs & I have had others that have passed so I understand the pain in that.  As faith said, I'm sure that could trigger a set back.  The flare up I'm in right now w my akathisia started when I went to my grandmother's house two weeks ago & all she did was scream at me & told me I was just having cravings.

Lovely. 🙄. Yeah, got set back a couple months ago when my now former gp refused to even exam me and screamed at me that I was listening to quacks and then demanded that I take an antipsychotic. Well that’s a swell idea for someone with aka. I stared at her through blurry vision and couldn’t even defend myself. Dr Horowitz said that when I’m better I should tell her that the quacks are writing the new fda guidelines. 

[[mc...]]

37 minutes ago, [[S...] said:

Aww @[Fa...] you are such a sweet person despite your suffering.  We all are, actually.  Such a shame this happens to the sweetest nicest people.  I have a friend with aka who I talk to daily & she is literally an angel & it makes me so mad that this happens to people who have not even done anything to deserve it. 

 

I am so happy that you are feeling better now & no longer pacing that much- progress!  Also by no means do I think anyone should follow in my shoes & cold turkey, I just want to 100% make that known.  I almost died before I found out what was happening, & I surely would not have followed thru with it if I would have known, I would have been too scared. 

 

I am working with a coach as well & it's so nice to have the reassurance & aide from someone who has been there done that. 

 

I wanted to ask if anyone else has this symptom.  I am waking up everyday to burning in my whole body & being super nauceus plus it feels like all my muscles are locked up.  It lasts about 3-4 hours in the morning & it really scares me.

I don’t have those particular symptoms but my mornings are definitely nasty. Usually wake up way too early. Sometimes with terror, sometimes depression. Then I get my cane and start walking, then shake uncontrollably for hours with a lot of lower body pain. 

[[Fa...]]

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

I don’t have those particular symptoms but my mornings are definitely nasty. Usually wake up way too early. Sometimes with terror, sometimes depression. Then I get my cane and start walking, then shake uncontrollably for hours with a lot of lower body pain. 

We do have different experiences with AKA.  I’ve found that out over time, and talking to the coach I speak with.  I initially assumed it was one type of experience.  Used to think a lot of things…

 

[[Fa...]]

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

I get pretty nervous about it. Little is known about benzos but they know more than most. I have been holding 4 months. I know there has been a lot of improvement but the suffering is still so great that it’s hard to see. I was on klonopin .125 for 15 years. It was upped to .5 during pandemic. I had a reaction to vaccine. Was given way too many meds. Then suspected serotonin syndrome. Than more drugs. Klon. Upped to 1+. Kept getting sicker. I had never had a problem adjusting klon. Dose before and was never aware any of this could happen. Was told to stop taking klon. Without taper. I thought I would taper over a few days. Made it to .25 and started hallucinating. Was told couldn’t be from stopping k. Symptoms continued to get horrific. Was put on tonazapam for sleep. Still getting sicker. Was put in Hospital where they did not recognize what was going on. They ctd me Off of tonazapam. Later they put me in 3 mg. Ativan and Prozac. I was a complete basket case by then. I eventually figured out what happened to me after researching Akathisia but still no doctor guidance and thought I had to get off drug quickly to get better. So I started Ashton rate. People kept telling me to push through. Hospitalized several times with heart rate and blood pressure problems, collapsing legs, etc. was finally told to stop tapering. 
so this crap has been going on 2 years. Before I was an extremely busy mom and high school teacher. 

Are you holding on Ativan or Valium?  I’m sorry, I’m confused.  What dose?  

[[wi...]]

Hi family. I missed you guys today!

First, mcat, I'm so sorry about your dog..I've been through it twice and it's a real hole in the heart.  I was there when she was put down, holding here as the life drained from her little body.  It was the only time in tapering that I actually cried like a baby.  It was so powerful that it broke through the anhedonia.  I felt so good to be able to release that pain and I would pay a lot of money to be able to have a good cry now, but alas, my f-ing emotions are frozen.  I feel them, but the cord has been cut that would allow them to travel to the surface and permit me to emote.  Makes me so damn angry.  Feels like a witches spell has been cast over me.

Faith, I TOTALLY remember "day 10" after a cut when I was tapering.  Brutal..I would start to feel it intensely about day 8, then day 10 would roll around and I would always think I went too fast or cut too much because I would feel so incredibly f'd up.  Ct is its own kind of hell, but so is tapering, too.  I now know the best of both worlds.  Ugh. I'm proud of the hard work you and the rest are doing in tapering.  It's really difficult, even if you go slow. My experience anyway.

Today was (okay, I'm going to curse) a fucking hard ass day!  I wanted to stay in bed becasue my body felt like lead and my muscles felt so weak, but I had to force myself up to escape the gloom and doom rumination that happens EVERY damn morning.  No breaks from that yet, and mind you it happened through my taper and now that I'm off from having a forced CT 3 months ago.

I have a roof over my head, but I am "homeless" in the sense of the word that I do not have my own place.  It's so stressful living with my sis and brother-in-law.  I'm terrified to be alone, plus the rents are outrageous.

I've always lived in big cities and rented.  I never owned a home and now I feel like I have NOTHING to call my own.

So I didn't even shower and slipped on yesterdays clothes (don't judge me, lol!) and got in my car this morning and just drove.  Which I am grateful for since I spent many moths unable to drive because of dizziness, blurry vision, lethargy and terror.  So, I drove south into the Pine Barren natural preserve and I had no idea where I was except for the map on the iPhone.  Suddenly, in the middle of nowhere I lost cell service and poof, the direction and map were GONE!  I was mildly insane with panic and I started to catastrophize with thoughts of running out of gas, having to sleep in my car, wanting to die, all of it.  You know the drill, I trust.  Thank god the small voice of reason was telling me everything is going to work out.  So I trusted myself to backtrack my journey on these scary (but beautiful) back roads, from memory, mind you.

When I came to the road (called Mt. Misery Rd...seriously!) my cell service came back and I felt so relieved.

I still did not want to go back to my sister's so I kept driving, and I have to say it was therapeutic just feeling like I was moving from place to place..it was great smelling the sweetgrass and clover in the air.  I am geographically near lots of water, bays , the Atlantic ocean, rivers, bogs and creeks that mix with the smell of the woods.  It sure beats the hot humid weather when it smells just plain funky outside.

Anyway, I really don't know what the hell my point is, I'm just plain rambling now..my brain is starting to play games and I can tell when the ringing in my ears increases, my nervous system is ramping up with more symptoms.  So I'm going to watch stupid youtube videos until I can get some superficial sleep (grrr!).

I miss sleeping deep so much!!  If we could sleep well, the experience wouldn't be quite as hellacious, I would think.  Who the hell knows anymore!

 

I'll be thinking of you all and holding you up in my heart and prayers.  Always.  Thank you for being here for me.

Love you and goodnight. :-)

[[Fa...]]

Hi All,

I just need to put this out there because I get very upset by this, and my usual course of action is to just disappear for a while.

I have so much to express, you know?  But, I go through these times where if I begin to express my feelings, the flood gate will open, and I will lose it...like my emotional body cannot handle being cracked open even a little because there is SO much in here, and I can't handle it all.  And, that stops me from being able to write...interact...the way I want to.

There are SO MANY 'me too's' when I read...and, I'm so used to being able to express myself...and, write.  And, now...when I get like this...it feels dangerous to do so.  Everything becomes dangerous.  It makes me cry.  That is why I kind of come and go on the site.  Sometimes I can handle sharing and exchanging, and sometimes it just flashes 'danger, danger, danger'.  Yesterday...how I wrote what I did, which was quite a bit really, I don't even know.  Moreover, wasn't even able to express things well...zero focus...just soooo not good.  Yes..day 10 was vile.    

@[wi...]  I, too, no longer have my own home.  I have been a caregiver of my mother (87), but I required help...I required help for me, and I required help to care for my mother.  So, we are now, as of two months ago, living with my daughter and her fiancé.  I have moved from the GTA (Greater Toronto Area) to the country way up north onto my daughter's farm.  I am scared to be alone, and I'm scared to be alone caring for my mother.  I know the feeling of giving up your own space, and it is not easy.  My old 'life' is gone.  I have kept some of my 'stuff' and boxed it up, but life has been disassembled bit by bit.  I have my car, but I can't drive it.  It's brutally humbling.  I'm just doing what I feel I have to in order to get myself through this.  And, it takes its toll on family.

@[wi...]I really enjoyed reading your post when I got up.  You have a great way of expressing yourself and story telling.  Thank you for sharing with us.  And, so glad you were able to find enjoyment on your drive even within dealing with loss of cell reception/direction and the fear...you turned it around.  Good for you!  If that is isn't a sign of healing, I don't know what is!  I do hope you slept well.

I hope all got sleep last night, and I hope we all move through our day courageously and optimistically.

Much Love and Appreciation,

F

 

 

 

[[wi...]]

@[Fa...] Always good to hear form you.  We have many things in common.  Before living here, I too was tasked with moving my independent life in Chicago to take care of my mother who is now 94.5yrs old. I tapered through my whole time living with her and it was terrible for both of us.  I'm sparing the details.

She has since sold her house and moved in with my other sister who live a few states away. We are all still dealing with the fallout from me not being able to have handled showing up for tending to my mom as I discovered how disabled the taper had left me.  

 

I know what you mean about not wanting to open the floodgates in sharing.  It's scary.  I've been pushing through the fear because I just feel like I'm going to freak out if I don't get some truth out there to people who really get this and can support me jus by being there at the very least.  

You are doing a good job of knowing your limitations and respecting them. We are going to make it out of this, I just know it.  Even though, for now, there is much fear and trembling.

Sending you light, my friend.

[[So...]]

hi all ❤️ I hope you ladies had a wonderful night & day.  I just wanted to tell everyone I am sick with a fever right now so I won't be able to write up a long reply but I've read everything you two have said & I relate to it all.  I am about to lose my home bcuz I can not work & I am totally unsure what my husband & I will do.  So much stress.

 

I'm not sure if this is the benzo flu since I am 3 weeks off today or just a regular cold but its highly uncomfortable on top of all the other crap I have going on. 

[[Fa...]]

@[So...]  I’m so sorry you are feeling flu-ish with fever on top of all else.  I get the flu symptoms, but I don’t know if I’ve been fevered or not.  I’ve never checked my temp.  Thank you for taking the time to post even while feeling so sick. ❤️

The financial struggle is real…especially with the way the world is now.  This doesn’t seem to leave anything untouched.  Seems as though many have had to move in with family while moving through this.  Actually, sick or not, many are having to do that because of the insane state of the economy.

Things will work out.  I’m sure you both will find a way through this.  My heart goes out to you.  The added stress does not help any of us.  Have faith that you will end up exactly where you are meant to, soapy.

Warmly,

F