Caretaker/family support for protracted withdrawal

[[Di...]]

Hi,

this is my first time ever posting in a forum, so I hope I don’t mess things up. I tried to figure out how to post under caretaker and family support, but couldn’t figure out how to do that.

My father is dealing with severe akathisia from benzodiazepine protracted withdrawal. To say it has been a nightmare and terrifying for all of us going through it as we try to help him is an understatement. 
 

everything I read, says to expect time being the greatest healer. He had his final dose of Ativan mid February. After he went through that final withdrawal, he seemed to be back to normal. Literally two weeks of bliss. But then had two very stressful situations happen back to back, and it caused him to relapse into protracted withdrawal and severe akathisia. 
 

We have learned so much about this horrible condition through Jordan Peterson, and many other stories with YouTube channels of doctors trying to get the information out. 

Currently my oldest brothers and my husband are taking shifts helping my mom during the days and nights. 

our family is a strong, Christian family. I have 6 siblings, most are all adults now, but we are caring for my youngest brother (16) as this would be too damaging for him to be around my dad in his current mental state. My dad was a therapist for many years and has been a man much like Jordan Peterson with such wisdom and strength. To see him in such a state as this is like living a nightmare. 
 

How do the families and caretakers get through this?! I wish I could help more, but I have young children at home and am currently pregnant, so the most I can do is research the condition, pray, and take care of my kids and the baby I’m pregnant with. 
 

We are a very naturally minded family, so we have searched for stuff that could help him sleep or take the edge off. He did seem to find some relief with NAD+ treatments from home, but it is incredibly expensive. I’d love to chat with some other family members who are doing what they can to help their loved one through this. I know most natural treatments also tend to only give windows of relief and often don’t last. 

He got on benzodiazepines June 2023 after having some type of mental break. Doctor tried klonopin for two weeks and it made him worse. They cut it cold Turkey and switched him to Ativan during the day and Valium at night. He stayed on those two throughout the summer until October when he started feeling better and started to taper it. He went too fast at first, but then slower and got off Valium first, then Ativan was officially gone by mid-February of 2024. We do think he was more susceptible to klonopin as he had been on Klonopin around 15+ years ago during chronic Lyme disease. I am not aware of how long he was on it as I was a teenager at the time. But he had been off the Klonopin for 15+ years before this past summer.

any encouragement or thoughts are welcome. I’m happy to answer more questions in the comments. 
 

thank you and please pray for us ❤️

Edited April 1 by [Di...]
Taking out mention of suicide

[[Re...]]

Hello @[Di...] Welcome to Benzobuddies, 

I am really sad to hear your father's suffering, I can imagine this is a very difficult time for your family now. He is very lucky to have you all, I admire all the caretakers here and in my real life too, it is an extremely difficult job. 

Your father has a history of long time use of benzodiazapines and previous cessation, 15 years is a long time. Our nervous system seems to remember all the changes when it comes to all the psychiatric medications. This phenomenon is called kindling, meaning each reduction might be worse the previous ones - this might be what happened to your father. A link is here. 

Akathisia is a very challenging condition, we have members who deal with this after changing their medications too fast, or taking a new one while being sensitized. Good news that it definitely gets better and better, and hopefully it will go away rather sooner than later by itself.

After 18 months of the cessation do we call this condition actually protracted here, the late Professor Heather Ashton and the Benzodiazepine Information Coalition has some useful information. Important thing to know: it is a cluster of symptoms of much discomfort, but the good news is that it gets gradually better, following a wave and window pattern. We have many, many members who hare completely recovered and out there living life, their journeys are very encouraging to family members as well, see the Success Stories if you have the time. 

I am sure that our fellow Buddies and/or their caretakers will comment soon to share their insights.

Take care and hang in there! 

[[Di...]]

Just to clarify, my father had been using Klonopin 15 years or so ago, but got off them around 15 years ago. I think his actual use of them was no more than 2 years. I’ll have to check the exact timeframe with my mom. 
 

just wanted to make sure it was clear that he hadn’t been using them for 15 years. 

[[Re...]]

My mistake @[Di...], thank you for bringing this to my attention. 😊👍

[[Li...]]

I’m sorry your father is suffering, @[Di...].  Akathisia is a horrible condition. Does he have access to a doctor who has expertise in treating what sounds like a benzodiazepine withdrawal injury? 

Re: your interest in connecting with other caregivers/family members …

I do not know how many currently active members we have who fall into that category.  If you don’t get much of a response here, the Benzo Warriors community on Facebook holds regular Zoom meetings for caregivers/family.

 

Also, in case you have not already discovered this via your research:

The Institute for Akathisia
https://akathisiainstitute.org/

 

[[Di...]]

Hi @[Li...]

We have a natural path type physician who has sent us some stuff we can do to help. She is familiar with akathisia. We haven’t found any psychiatrists in the area who are familiar with this, but it’s also been difficult to even find that out unless you can talk to someone. 
 

My mom did get an appointment with a neurologist, who is familiar with akathisia. I’ll be shocked if he can do anything for him without just telling us more drugs, which we obviously don’t want to do. But she wants to try it. 

[[ne...]]

Your father is so fortunate to have a daughter (and more family members) finding out how best to treat him during his benzo injury and like you wrote, less is more and time is his friend. Absolutely praying for your family. 

[[...]]

@[Di...] I am currently the sole caretaker of my 23 year old son who's going through benzo wd and I completely understand everything you and your family are going through. Your father is fortunate in having such a strong, large family that is well informed and willing to help him. In our case, it's just me and my 20 year old daughter and my parents who are in their 80s, so there is only so much they can do (although they do everything they can), my son's father is virtually absent.

I have no experience regarding paliatives as my son (and myself) is terrified of experimenting with new medication or supplements. When he was at his worst I did talk him into taking a "natural remedy" which was just a made up placebo, it did help him take the edge off for a while, though of course it didn't make the symptoms go away.

The other thing I've learned as a caretaker is that emotions are very contagious, especially those of people in wd and especially the negative ones like fear and anger. One of the hardest things, I've found, is to keep my own emotions in check and not to get caught up in the turmoil of benzo despair. When my son has had benzo rage aimed at me, I've felt it too, when he's been terrified, it's hard for me not to think there are reasons for that fear. I've found talking about those things with my mom helps me out of the emotional chaos, as she has a bit of distance, living in another place.

The other thing is it helps to go over the intensity and variations of the symptoms with others, I think this is something you can do with your family. Being with my son practically 24/7 it's hard for me to see any developments, so It helps to ask my daughter and parents, who don't see him every day and who can help me keep the hope alive that he is improving. 

One of the hardest things for me is discovering how alone we are in this, not having any support from the medical community, from extended family and friends (virtually everyone I know is in denial because they are taking psych meds themselves). This forum and others on FB have been the only help I've found. Again, it is wonderful that your father has such a large support system.

Feel free to message me, you're in my prayers, stay strong.

[[Bo...]]

Praying for yall…. I have had a very severe case of it and stuck on Mirtazapine at 4mo off bc I was in psych ward as parents couldn’t manage anymore. It has now made me worse and I’m trapped on it barely able to taper so please try to avoid that route, but sometimes medicine trial is nexessary(I had no access to computer or phone to see aka is a side effect of Mirtazapine and then was too far on it to stop CT). Beta blockers are the safest choice and others have had clonidine but be very careful to start anything. No natural things oiut there unfortunately as I’ve researched everything. Sometimes all meat diet can help and some friends I’ve made are on opioids that are severe life threatening kind of aka. Suboxone and morphine and think Mayo Clinic has suggested that’s safer than other psych meds for relief but comes with its own issues.

im glad yall have a rotation in place so the burn out doesn’t happen although it is very tough on everyone even one day dealing /watching a loved one endure the torture of it. 
 

everyone says it goes away at some point but it truly is hell beyond words. Some tips scream it out, punch pillows or punching bag, but inflatable kids bat against things, scream in the car, take shower as many times a day as needed if that helps, walk or pace for some people helps, throw pillow or cushions across the room, the mental kind is brutal and just have to endure and pray. None of this stuff makes it go away but it can get some of the horrid energy out. I keep praying for those of us that have it and may God lift it away soon and will add your dad and family to my prayers. 
he is so lucky to have yall and please keep him away from the hospital or psych wards as 95% of them don’t understand aka and will label it bipolar or schizophrenia and drug him up bc patients don’t get a say in there no matter what staff tells yall (you can refuse meds- nope many don’t let you and force it or give shots).

hugs and healing wishes 

[[Bo...]]

Also Angie peacock is great that has family support group yall might find helpful . here are some YouTube’s and she has website for appts 

https://m.youtube.com/@AngiePeacockMSW

https://calendly.com/apeacockconsulting

also Jenn Swanktowski works with families also in this as she’s a therapist in this journey. You can msg her on instagram I believe or her website 

https://m.youtube.com/@jenniferswanphd/videos