Withdrawal symptoms? Tapering starting advice please...

[[ab...]]

 

Hello. My wife is suffering from long term benzo treatment.
English is my 2nd language, so I apologise if I may say things wrong.

My question is...
1. Has anyone here experienced talking like a child after extreme stress during W/D?
2. Her symptoms are bad even after going back to the original amount. Anyone started tapering when they still have bad symptoms after putting back the amount?

My wife is having the below symptoms and it seems to be changing as time passes.

She is taking the below for 4 years+
- Brotizolam 0.25mg for sleeping
- Ethyl Loflazepate 1mg for anxiety

In Early August, she found out that benzo was bad for her, and did some research. She cut down her Ethyl Loflazepate down to 3/4. and then after 2 weeks without any problem, down to 5/8. Without doctors consultation.

At first she had severe depression along with growling words that doesnt make any sense, jumping around. Everytime she tries to sleep, she have like the feeling that a lighting struck her. It comes and goes, and she had that for about a week in August. The rest she could go to Yoga, Jog and do some work.
In September, it became worse and the symptoms were getting longer. She was without symptoms only for a week in September.
End of September she couldn't bare it so we went to the doctor and told him she cut down the pills. And was suffering. The doctor said to take Alprazolam when needed. Which she took once or twice only. She was very scared of taking it.

By end of October, it was not doing anything and it got even worse. After alot of growling, hitting the bed, jumping around, all of a sudden, she acts like a 1 year old child. She only could say simple words, "mommy mommy... Happy Happy..." or call my name. Has anyone experience this before? I could not find anything similar online. So I assume it is coming from extreme stress.
She 100% understands what I say, but cannot speak due to her face being numb and toungue sticking out all day.

So we went back to the doctor again. And he said to take Alprazolam 3 times a day. Which she did for the first 2 days. But taking it for the first 2 days 3 times a day made her not able to talk, looking up at the ceiling for hours growling. She started to have cramps? convulsions? in her face. And then ended up her whole body having it. They were very bad, it looked like a seizure.

We went to the neurologist and had lots of scans. Even took a cerebrospinal liquid test just in case for brain inflammation.
But found nothing.

Currently, she is in severe depression all day long, and had a few attempts. I had to hide the knives belts or anything dangerous.
The doctors aren't much help here in our Country and say its not a withdrawal symptom from benzos. It's already been a month since she put back to her original amount, but it is only getting worse day by day.

And to the question again, as stated in the beginning..
Have any of you experienced behaving like a 1 year old child? i mean literraly. clapping hands, laughing for no reason, only can say simple things again and again.
And, have any of you started tapering after you put back the amount of medicine, and not waiting till the symptoms are away? 

I apologize for the long sentence and thank you for reading.

 

[[...]]

@[ab...], welcome to BenzoBuddies!

So terribly sorry. Both must be a torture to be suffering so much or watching your dearest suffer and feel helpless. Your wife is extremely lucky to have you to take care of her.

I, personally, didn't experience such a child like state caused by the stress of benzo withdrawing but it seems to me quite probable. 

As for your second question, I'm the one who started  tapering when feeling horrible for a long time after having up-dosed to my usual dose. The process itself was brutal but my state wasn't much worse than prior to it. And I actually felt better to the end of my taper.

I'm sure other folks here will chim in, share to the point too and try to help!

Good luck to you and your wife! Hope with all my heart you will find solution for her to heal sooner!

[[ab...]]

[[...]]

@[ab...], let's wait what other buddies can say. I'm sure there must be something useful you can learn from them but sometimes it takes time to get more replies.

I understand your wife felt more or less fine prior to tapering off of benzo for the first time in August, right? She reduced ethyl loflazepate but the brotizolam dose remained the same, did it?  Any other meds at all?

[[ab...]]

[[...]]

@[ab...], I reread your wife's story twice. I'm not an expert just have my own experience of benzo withdrawal. My nervous system reacted to the changes with overwhelming inadequate pain which no doctor could account for. Nobody thought it was due to benzo. I did have some mental issues caused by benzo withdrawal as well but they were drowned out by that excruciating pain. The reaction of your wife's nervous system is different but even timing of worsening seems to be very similar to mine. In my case, more reasonable coming off benzo without much prolongation for the second time  really helped.

Maybe you should start one more thread concerning exactly details of tapering on Taper Strategies forum?  I think it should help. There are very experienced buddies there who, I'm sure, would be ready to share their experience with you. This thread could be for everyone to give their thoughts on your situation in general.

One more thing. I'm not that good at tapering but I'd start tapering off of brotizolam first because of its short half life and then ethyl loflazepate.

Wish your wife smooth tapering and you strength and patience!

[[Ku...]]

Hello Ablanagere. I am responding in behalf of my wife who is Kudos2 and is currently still going through withdrawal and can tell you she went through the same symptoms as your wife and many more. Most of these bizarre symptoms are gone now but it took some time to get through it. She was on a low dose of benzodiazepines (Klonapin) and anti depressant (Zoloft)for around 40 years and rapid tapered off both. In the beginning she had trouble talking and unable to say anything other than bla, bla, bla, sticking out her tongues, acting childish, facial grimacing, twitches, shaking, laughing and then crying within seconds, trouble walking, acting goofy and many other strange symptoms. The Akathisia is what caused a lot of the weird desperate stuff and I had to hide all the knives too. We also went to the neurologist and had numerous tests done with no abnormalities found. She did not go back on any medications since jumping off and we just persevered through it until they faded away. She is still suffering but with more of the typical symptoms now like burning, inner vibrations, cognitive brain issues, sensitive hearing and some others. The Akathisia has settled down a lot but is persistent and still a nuisance. Healing does happen but you must be patient because it is a SLOW process. We also did some sessions with some of the coaches which was very helpful.

Edited November 28, 2024 by [Ku...]

[[PE...]]

On 27/11/2024 at 07:35, [[a...] said:

Has anyone here experienced talking like a child after extreme stress during W/D?

I have never heard anything like this. Though i can imagine extreme anxiety from withdrawal might make someone call out for mom.

[[PE...]]

On 27/11/2024 at 07:35, [[a...] said:

So I assume it is coming from extreme stress.

Yes that's my guess to. She's in a very bad way. I'm sorry..

[[ab...]]

[[ab...]]

14 hours ago, [[K...] said:

Hello Ablanagere. I am responding in behalf of my wife who is Kudos2 and is currently still going through withdrawal and can tell you she went through the same symptoms as your wife and many more. Most of these bizarre symptoms are gone now but it took some time to get through it. She was on a low dose of benzodiazepines (Klonapin) and anti depressant (Zoloft)for around 40 years and rapid tapered off both. In the beginning she had trouble talking and unable to say anything other than bla, bla, bla, sticking out her tongues, acting childish, facial grimacing, twitches, shaking, laughing and then crying within seconds, trouble walking, acting goofy and many other strange symptoms. The Akathisia is what caused a lot of the weird desperate stuff and I had to hide all the knives too. We also went to the neurologist and had numerous tests done with no abnormalities found. She did not go back on any medications since jumping off and we just persevered through it until they faded away. She is still suffering but with more of the typical symptoms now like burning, inner vibrations, cognitive brain issues, sensitive hearing and some others. The Akathisia has settled down a lot but is persistent and still a nuisance. Healing does happen but you must be patient because it is a SLOW process. We also did some sessions with some of the coaches which was very helpful.

@[Ku...] 

My wife has some more hope now that she knows someone had the same symptoms. All the doctors couldn't help her either. It's unfortunate doctors doesn't have much knowledge about W/D symptoms for benzos and tapering... I am not blaming them though, as it is a very hard subject.

I really appreciate your info. I couldn't find anyone with the same symptom in my languange or in English, so it was super frustrating for her not knowing what the cause was. I was using ChatGPT for asking so many questions till I ended up here.

I hope your wife will be okay too. Such a cruel thing to happen to a person....

Thank you very much.

[[ab...]]

13 hours ago, [[P...] said:

I have never heard anything like this. Though i can imagine extreme anxiety from withdrawal might make someone call out for mom.

13 hours ago, [[P...] said:

Yes that's my guess to. She's in a very bad way. I'm sorry..

@[PE...] If it was just calling out for "mom" because she was in pain that I can understand.
But her actions were like her IQ was dropped drastically. That really scared me. And very sad at the same time.

I hope that doesn't come back again, though I wish there was a miracle to fix everything just like that...

Thank you for the reply.

[[...]]

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

@[...] Thank you. We still do not know if it is the side effects, or the actual W/D symptoms. We have decided to maybe give it more time and see if my wife recovers and back to her normal stage before tapering.

I do not know if this is the right way, but guess time will tell. All I can do is talk to her and calm her down and say "everything will be alright". Though I feel so bad telling her that, because I do not have any evidence that she would actually be. Only hope.

About which to taper first, we will try ethyl loflazepate first, because I think sleep is key. And she needs to get some sort of sleep at least. So will do brotizolam last.

I shared your story with my wife and she has bit more hope now. Once again, Thank you very much.

@[ab...], I'm glad to know our stories have given hope to your wife, even if a bit. It's crucial to have hope and believe in healing. I feel positive, given time, she should get better.

I asked some benzo free people of my locality about such reaction to stress caused by benzo. One woman said she had smth very similar too. Now she's much better, although it took her quite a time.

As for tapering and which one should be tapered off first, I think when you're ready to start reducing her dose, it would be really useful to discuss everything on Taper Strategies forum beforehand. 

Hope your wife will soon stabilise and ready to heal.

[[ab...]]

@[...] Thank you for asking! I couldn't have imagined how stress is one powerful thing that can give so much harm to the body...

And yes I will discuss it in Taper Strategies while she is recovering and ready. Thank you!

[[ab...]]

Just a memo for others to see.

Seems like her menstruation is also a trigger. She is feeling not bad since yesterday, hope it is the medicine doing its work, and not a temporary thing...

My wife is like the below so far.
1st week, it gets worse day by day.
2nd week is very bad at a peak.
3rd week, the W/D eases but still hard.
4th week they are bearable ones.

https://benzowithdrawalhelp.com/for-bwd-bind-sufferers/womens-health-issues-in-benzo-withdrawal-bind/

Also, I found this post yesterday which helped her to cope with her current state so far. I too read it and it is very encouraging and informative.

 

 

Edited December 1, 2024 by [ab...]

[Colin]

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

Also, I found this post yesterday which helped her to cope with her current state so far. I too read it and it is very encouraging and informative.

Hi @[ab...]

Yes, @[pa...] contributed some very helpful content in her time here. There is more here:

Here are some more helpful long-form posts by another member, @[Pe...], which you also might find interesting:

Repository - BenzoBuddies - Benzodiazepine Withdrawal Support

[[ab...]]

@[Co...] Oh, thank you very much!

I'll have a read before I tell my wife. I have to choose my words... I always make her mad or anxious. I'm very bad in telling her things.

[Colin]

I have moved the thread here, Families & Caregivers. Hopefully this will mean the thread is more visible to other caregivers.

[[ab...]]

@[Co...] ok thank you!

[[...]]

@[ab...] I'm so sorry you and your wife are going through this, it really is hell. I just wanted to add that I've seen similar symptoms in my son, who is almost two years benzo free. During his first year in wd there were times when he couldn't talk normally, he understood everything I said but he could only say some gibberish like fal-fal-fal. At other times, during acute anxiety, he would zone out and call out ma-ma-ma in a zombie-like state, without noticing anyone around him. It seemed like his IQ had indeed dropped or something and it was very scary. The strange thing is that these episodes always ended abruptly, like some switch went on and he was back to his old self. Now, these symptoms have ebbed away and I'm not sure when was the last time he had them.

The thing that is very difficult as a caregiver, but probably good for the benzo patient, is that they tend to forget it ever happened. So that is something that will be very confusing for you. There will probably be other symptoms they are not much aware of, that is why I think it is good to have the input of other carers.

Anyway I wish you strength and patience and much healing to your wife.

[[ab...]]

[[...]]

Hi, I also think it's all related to extreme stress. I've basically done the same as you when it happens, just sit by him and tell him I'm there and that it'll go away. You just have to improvise in these situations.

I've also noticed something similar to the seizure-like reactions you mentioned. It's a bit like he gets stiff in some part of the body which he can't move for a while and then there's a lot of trembling as movement returns. He still gets stiff in his arms or legs when he's stressed but it doesn't last more than a minute and movement returns more easily.

I sometimes think these symptoms are designed to freak us out but you have to keep in mind that they will go away by themselves. I don't want to burden you with further descriptions of symptoms because not everyone has the same ones.

My son didn't take benzos for very long (4-5 months initially I think) so he was prescribed a fast taper, but some years later he was prescribed again to basically take as needed which I think was a terrible mistake. But as far as I've seen it doesn't really matter how long you take them, my theory is that some people's cns are more sensitive than others. Also, the prevalence of certain symptoms over others is also different. Also, being "stable" is relative, it just means the symptoms aren't so bad that you can still be functional.