Need support and someone to listen. 😞

[[Jo...]]

 By tomorrow I’ll be 8 months out from last dose of k. And I been noticing that my symptoms are starting to get worse. When I get up from my bed it feels like I am covered in a thick molasses that is preventing me from moving like I supposed to. My legs and arms feel heavy to where I can hardly walk. And My face and neck twitch aggressively now. And the inner trimmers are a lot worse. I don’t know if this is a wave or what? But, this is probably the toughest one I’ve been through. It is definitely the most debilitating. I have been staying in bed for a couple of weeks now because of all this. I’m trying my best to wait it out. But, it’s hard not to notice that I am slower than before, I am only 23. 

My parents are worried sick. All of what I am going through taking a toll on my mom. She can’t talk to me about my situation without crying now. She told me that she is worried about me not being able to get around. She has even told me she misses the boy that run and jump outside. This genuinely feels like a nightmare I can’t wake up from.😖 

Thinking Out Loud: 

I have been trying to find what has been making me worse. I have been eating healthy and exercising every now and then. I have eaten lot of kale lately mainly because it is high on Vitamin C, lowers cortisol, and lowers histamine. So I thought kale was the perfect food to be eating while healing. I even been thinking that the drug I take a night Amitriptyline is making me worse. But, I have searched this thing up and down. And surprisingly can’t find anything that would raise red flags despite a couple of people saying that it is a dirty drug. There have been people that healed on Amitriptyline. 

I also have doctor’s appointment coming up on May 9. They are going give me a food allergy and vitamin test to see if anything is off. I’ll also ask the doctor if they can give me a Gene test to see if I am having a bad reaction to the drug I am taking or not.

[[Ar...]]

Hello ☀️ 

Hubby takes Amitriptyline 10 mg for neuropathy.

If he takes it to late (after 8 pm) he will be very tiered in the morning.

What time do you take it?

How high is your dose? If larger than 10 mg did you gradually increase?

How long have you been taking it?

[[Bo...]]

I’m 8mo off too and in a very tough spot. It’s the nature of this and I am so sorry.
 

 Jenn Swanktowski YouTube videos can help break this all down for us and show it’s our dysregulated nervous system and help bring some peace knowing we are going to be ok. She’s a therapist going thru this tapering Xanax. She has family videos that might help your family understand why this is happening and think she counsels some families too for guidance. As does Angie Peacock and Dr Jenn Leigh.

Keep pushing towards the 9 month marker and then the year will be here before we realize. This is all very common stuff but if you feel more comfortable begging some things checked out that’s advised and can bring comfort knowing it’s not something else underlying. It’s all so difficult and I am so sorry you’re in this. You will get back to you and have youth in your side and so just keep taking each day and coping best thru that day and it adds up. 
18monyhs many people see big turnarounds so know it unfortunately takes too long but things do get better.

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

[[Bo...]]

Oh and I am taking Mirtazapine unfortunately at night snd likely both of our meds are contributing with their own crap but have been told the benzo stuff heals underneath so keep holding on to that.

[[Jo...]]

Thank you for responding @[Ar...], I am on 25mg and I have been taking it for 7 months now. 
 

I definitely appreciated @[Bo...], I’ll check out the video. Honestly, if I were to go back and pick a drug I want to be on while going through this I probably would have picked Mirtazapine. Mainly because there have been more people that healed on Mirtazapine than Amitriptyline. 

[[Ar...]]

At what time do you take it?

For hubby it did not provide any benefit for his insomnia, but that's him. He was at 25 mg at one point, but reduced to 10 mg due to extreme next day drowsiness & sinus problems.

Even though it exists in 10 mg tabs in other countries it is not available here, so I have to cut them.

There is a lot of off label use with Amitriptyline. 

It should not he taken after 8 pm

Also

"Amitriptyline is associated with various movement disorders, particularly myoclonus, dystonia and dyskinesias. Stutters and restless legs syndrome are some of the less common associations."

Researchgate

I would discuss it with my doctor.

 

Edited April 30 by [Ar...]
Added content

[[Ar...]]

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

I’m 8mo off too and in a very tough spot. It’s the nature of this and I am so sorry.
 

 Jenn Swanktowski YouTube videos can help break this all down for us and show it’s our dysregulated nervous system and help bring some peace knowing we are going to be ok. She’s a therapist going thru this tapering Xanax. She has family videos that might help your family understand why this is happening and think she counsels some families too for guidance. As does Angie Peacock and Dr Jenn Leigh.

Keep pushing towards the 9 month marker and then the year will be here before we realize. This is all very common stuff but if you feel more comfortable begging some things checked out that’s advised and can bring comfort knowing it’s not something else underlying. It’s all so difficult and I am so sorry you’re in this. You will get back to you and have youth in your side and so just keep taking each day and coping best thru that day and it adds up. 
18monyhs many people see big turnarounds so know it unfortunately takes too long but things do get better.

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

While possible it is caused by the cessation, it could also be something else ex. the Amitriptyline.

Hubby developed double vision. As it turned out it had nothing to do with his cessation, he simply needed glasses. Now he's fine on that front at least.

Personally I think having matters checked out is important.

[[...]]

Sorry to hear about your health issues. Wish you luck

Edited April 30 by [...]

[[wi...]]

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

When I get up from my bed it feels like I am covered in a thick molasses that is preventing me from moving like I supposed to. My legs and arms feel heavy to where I can hardly walk

You describe this very well. I experience the same exact feeling and it sure does take serious effort to move. It’s not “fatigue” or being “lazy”, it’s neurological. 
It’s very difficult. Please hang in there. I have to believe it gets better. Others have had the exact same thing or even worse to where they couldn’t even stand or sit up, and they got better. ❤️

[[Ca...]]

You are going to recover. I have the same thing every morning. The only way I can get up is to tell myself I can go back to bed at any time. You're young. I think that is a plus for you.

[[so...]]

It takes a lot of courage to do what you’re doing . Especially at such a young age . I thank you for sharing . That said , I think your brain is young , and still forming neuronal pathways / connections … etc . And can certainly heal faster than say mine at 45 ! … I’m working on a klonopin taper for about a year now . having painful symptoms as well . Heck , we’re all here talking because we’re suffering right ? Seems like only time heals this thing we’re dealing with . Time is on your side . Be well , let us know how you’re doing . 

[[Jo...]]

Thank you all for y’alls support. I really appreciate it. I just talk to mom today. She said that she is afraid that we don’t have a plan for me and that she doesn’t really believe that it was the drug. She said if the brain is actually healing then why are you getting worse? I keep telling her I don’t know. She also thinks that this has something to do with thyroid again when we all ready checked it last year! My mom even told me that I have seen more doctors than people see in a lifetime.
 

My Mom isn’t listening to me. My psychologist confirmed with me that it will take a while for me to heal. I even showed my psychiatrist Ashton Manual and she agrees with me. So now it is getting to point where my is denying what doctors say too.

[[Bo...]]

Have her listen to this ….. there are three parts. Jenn is a therapist who is tapering off Xanax and has a lot of great videos. 

And BIC is very informative- she might be having trouble processing this abd in denial bc it’s very hard to come to terms with a prescribed medicine can do all this to someone. Jenn Swan talks to families about it as does Dr Jenn Leigh (benzowithdrawalhelp.com)

https://www.benzoinfo.com
 

[[Rh...]]

@[Jo...] and @[Bo...]

Hi!  Wanted to chime in here because we are in similar situations.  I am coming on 10 months off Mirtazepine (which is a lot like amitriptyline) and I am a few years off my benzo, but I commiserate and share the same symptoms as you two do.

A lot of new stuff has cropped up since I came off and each month I actually feel like I’m getting worse and worse.  Mornings are horrendous and my head/brain/neck are my worst symptoms with so many things happening I cannot began to describe them all.

Id love to support each other since we have the same meds and issues and timelines (at least with the AD’s). 
 

Let me know!  - Rachael 

[[fa...]]

On 30/04/2024 at 16:29, [[J...] said:

Thank you for responding @[Ar...], I am on 25mg and I have been taking it for 7 months now. 
 

I definitely appreciated @[Bo...], I’ll check out the video. Honestly, if I were to go back and pick a drug I want to be on while going through this I probably would have picked Mirtazapine. Mainly because there have been more people that healed on Mirtazapine than Amitriptyline. 

Mirt gave me back muscle contraction

[[Re...]]

On 01/05/2024 at 07:56, [[J...] said:

Thank you all for y’alls support. I really appreciate it. I just talk to mom today. She said that she is afraid that we don’t have a plan for me and that she doesn’t really believe that it was the drug. She said if the brain is actually healing then why are you getting worse? I keep telling her I don’t know. She also thinks that this has something to do with thyroid again when we all ready checked it last year! My mom even told me that I have seen more doctors than people see in a lifetime.
 

My Mom isn’t listening to me. My psychologist confirmed with me that it will take a while for me to heal. I even showed my psychiatrist Ashton Manual and she agrees with me. So now it is getting to point where my is denying what doctors say too.

@[Jo...]What you are explaining sounds like textbook benzo withdrawal. Benzo withdrawal mimics other illnesses. You can read about that here and show your mom. Doctors don't learn about this in medical school and they are not trained to acknowledge drug harm. Your mom can learn about that here. You can have your mom watch this explanation for family and friends and speak with Dr. Jen or Angie Peacock to help educate her. I had to educate my family and friends about this. I had to meet with my family with coaches to bring them up to speed on what is happening to me. Don't stop advocating for yourself.

Amitriptyline could be contributing to your symptoms. The fact is that anything taken in benzo withdrawal can be a complicating factor. But the strategy on how to deal with that if it is the case is something to discuss with someone like Dr. Josef Witt-Doerring, Dr. Mark Horowitz or Angie before you make any decisions.

You have to throw out the timeline for healing from this. Most people heal in 12 - 18 months. Some turn a corner sooner. You can only take things one moment at a time.

I am glad at least your psychologist understands.