Setback or akathisia stories - please give me some hope!

[[Av...]]

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

I have been experiencing it in recent weeks. My worst days, like yesterday, I pace 16 hours like you. I have had some days without it. I have been getting it as a result of startup effects of Mirtazapine. Do you experience it every day or do you get it in waves without respite? It's the worst symptom I have yet to experience and it's not even because of benzos for me. I think I made a big mistake taking Mirt. Or at least I should have started a lot slower.

It's every day for me. 

[[jo...]]

Sorry to here that. There are people on here who had it like you and it stopped. It will go away. I know that probably isn't much comfort at the moment but even severe cases do let up. It is a horrific thing. I actually explained it to my doctor today and you could tell he didn't get it. He just said. "Oh yeah irritation and restlessness are common side affects but you'll be fine" I wanted to shout at him. It is anything but fine. It is torture. You can get through it like the others though. Keep going. He also gave me propanolol (think thats what it's called) I haven't tried it yet but am guessing it wont help much.

[[Av...]]

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

Sorry to here that. There are people on here who had it like you and it stopped. It will go away. I know that probably isn't much comfort at the moment but even severe cases do let up. It is a horrific thing. I actually explained it to my doctor today and you could tell he didn't get it. He just said. "Oh yeah irritation and restlessness are common side affects but you'll be fine" I wanted to shout at him. It is anything but fine. It is torture. You can get through it like the others though. Keep going. He also gave me propanolol (think thats what it's called) I haven't tried it yet but am guessing it wont help much.

Thank you. I've had it before, but it's never gone on for so long or been so severe. So, I'm getting pretty tired and I'm totally devastated that it returned.

Have you stopped the Mirtazapine? If that's what is causing it for you I would do that first?

I take propranolol, but it doesn't do much, if anything for me. Certainly does nothing for the mental symptoms. 

[[jo...]]

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

Thank you. I've had it before, but it's never gone on for so long or been so severe. So, I'm getting pretty tired and I'm totally devastated that it returned.

Have you stopped the Mirtazapine? If that's what is causing it for you I would do that first?

I take propranolol, but it doesn't do much, if anything for me. Certainly does nothing for the mental symptoms. 

I haven't stopped the Mirt yet, but I wish I never started it. I made a 7.5mg cut recently and it threw me into hell!. Yesterday was one of the worst days of my life. Today somewhat better. It's made me scared to cut again. Mabey go not so big next time.

[[jo...]]

Oh, the reason I want to stop is also because of aka. Or restlessness and agitation as the doctor put's it. Or minor to modorate start up effects as the guy on the crisis line I called last night would put it. Yeah ok crisis guy. The crisis line which by the way I had to call three times before they called me back. So not that great in a crisis really are they ironically.

Edited July 26 by [jo...]

[[jo...]]

10 minutes ago, [[A...] said:

I take propranolol, but it doesn't do much, if anything for me. Certainly does nothing for the mental symptoms.

I thought I'd experienced the worst possible mental symptoms. Until I experienced this. And the phyisical stuff is horrific too. It's just the worst of everything. You've got through it before you can do it again.

[[Av...]]

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

I thought I'd experienced the worst possible mental symptoms. Until I experienced this. And the phyisical stuff is horrific too. It's just the worst of everything. You've got through it before you can do it again.

Thank you. I'm sorry you've experienced it now. Yeah, it is the most horrific symptom going if you have the mental part of it as well. And, it can be different levels of intensity. Mine hit a peak in March and was like nothing I have ever experienced before even though I've had akathisia before. Even now, it's extreme. 

[[jo...]]

Yeah I feel for you. I seem to get mental and physical too when it strikes. Really bad SI. My mind goes from 0-100 in a split second. Everything becomes compleately unstable and terrifing. And that inexplicable energy in your limbs that just wont go away no matter how much you pace and squeeze and fling your limbs about. Torture.

[[jo...]]

Are you on other meds? I thought when you were off all meds it would run it's course and not come back as meds are the cause of it.

[[Av...]]

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

Are you on other meds? I thought when you were off all meds it would run it's course and not come back as meds are the cause of it.

No, that is not always the case. It can be a withdrawal symptom too i.e. it begins after a person stops taking a med and it continues for quite a while afterwards. It can also occur as an adverse reaction to a drug and continue after the drug is stopped. 

In my case it would appear that it has returned as a result of an acute setback triggered by me drinking a lot of alcohol. I'd been drinking moderately for a few years with no issues, but clearly there's a threshold and I went over it on a night out in January.   

 

[[jo...]]

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

No, that is not always the case. It can be a withdrawal symptom too i.e. it begins after a person stops taking a med and it continues for quite a while afterwards. It can also occur as an adverse reaction to a drug and continue after the drug is stopped. 

In my case it would appear that it has returned as a result of an acute setback triggered by me drinking a lot of alcohol. I'd been drinking moderately for a few years with no issues, but clearly there's a threshold and I went over it on a night out in January.   

I drank in withdrawl and got away with it a couple of times until I didn't. I'm learning a hard lesson or two.

[[jo...]]

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

It can also occur as an adverse reaction to a drug and continue after the drug is stopped. 

Uh Oh!

[[Av...]]

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

Uh Oh!

You should be ok. Taper off that Mirtazapine though.

[Guest [It...]]

Hi Avalon, 

My setback happened much earlier in withdrawal then yours but here's briefly what I went through.

 

My initial withdrawal only lasted about 13 months or so, follow by some mild lingering symptoms and then I was completely symptom free for several months. At 22 months off I experienced a severe reaction to an antibiotic. The gates of hell literally opened and I was in a state of acute worse then anything I had ever experienced. healing from this has been slow but progressive over the last 3 years. I'm now just over 4.5 years off and I live a completely normal life. I work in healthcare (stressful), manage a household and family, socialize, stay up late, eat what I want, sleep better then ever, relax, deal with stress ect.  I still don't take supplements, drink caffeine or alcohol or take any medications but after years of this shit I'm not sure what i'll ever feel comfortable again putting in my body. 

 

Anyways, long story short, people heal from setbacks. Almost all of the others I met when I first experienced this setback are now on the other side and thriving, or at most left with some lingering but manageable symptoms.  You will get through this and get to the other side and it will likely be much sooner then you expect that you will. The more time I spend in the benzo community the more and more anecdotal evidence I see that supports the further out that you get the shorter setbacks seem to last!

You will get through this, hang on.  

[[Av...]]

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

Hi Avalon, 

My setback happened much earlier in withdrawal then yours but here's briefly what I went through.

My initial withdrawal only lasted about 13 months or so, follow by some mild lingering symptoms and then I was completely symptom free for several months. At 22 months off I experienced a severe reaction to an antibiotic. The gates of hell literally opened and I was in a state of acute worse then anything I had ever experienced. healing from this has been slow but progressive over the last 3 years. I'm now just over 4.5 years off and I live a completely normal life. I work in healthcare (stressful), manage a household and family, socialize, stay up late, eat what I want, sleep better then ever, relax, deal with stress ect.  I still don't take supplements, drink caffeine or alcohol or take any medications but after years of this shit I'm not sure what i'll ever feel comfortable again putting in my body. 

Anyways, long story short, people heal from setbacks. Almost all of the others I met when I first experienced this setback are now on the other side and thriving, or at most left with some lingering but manageable symptoms.  You will get through this and get to the other side and it will likely be much sooner then you expect that you will. The more time I spend in the benzo community the more and more anecdotal evidence I see that supports the further out that you get the shorter setbacks seem to last!

You will get through this, hang on.  

Thank you so much. I really needed to read something like this right now as I’ve had another pretty awful day. 
 

 

[[So...]]

@[jo...] Propanolol usually doesn't help until the higher doses, just wanted to lyk.. it is a fairly safe drug tho imo.  If you wanted to try it, you'd probably have to work up to 40mg 3x a day to really start getting relief, but I think you should try to get some time off the mirt first. 

[[jo...]]

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

@[jo...] Propanolol usually doesn't help until the higher doses, just wanted to lyk.. it is a fairly safe drug tho imo.  If you wanted to try it, you'd probably have to work up to 40mg 3x a day to really start getting relief, but I think you should try to get some time off the mirt first. 

Hi, @[So...]. I have 40mg tablets. What relief have you found they have given you?

[[Ba...]]

On 22/07/2024 at 10:05, [[P...] said:

No setbacks so far 9 months out. But i do had akathisia for a few months. 

Do you pace or is inner trembling? Im now confused about the difference.

[[PE...]]

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

Do you pace or is inner trembling? Im now confused about the difference.

Inner trembling is not akathisia. I HAD akathisia pacing all waking hours. Look for Christine akathisia on YouTube.

[[So...]]

I only ever took 20mg.. didn't really help much from what I could tell.. clonodine helped a little more just in that it made me very tired @[jo...]

[[Av...]]

Just wanted to post a little update for anyone who is interested. I’ve just entered the 8th month since this setback began. Thankfully, the aka attacks have reduced in duration and intensity a great deal over the past month. I cannot overstate how relieved I am about this. My setback brain was telling me I’d be pacing for years.

Whereas before I could be pacing frantically for hours, multiple times a day, I am now down to about 1 episode a day and the pacing is more subdued. More than once it’s only lasted about 10 minutes or so. To be able to sit and watch TV in the mornings feels wonderful. I still have a fear that it might return more intensely again, but as each day passes I’m feeling more hopeful that it won’t.

All my other symptoms have reduced in intensity a bit too, but are still pretty disabling. The crying jags, particularly prevent me from leaving the house still. When these symptoms make me feel very low, I remind myself that at least I’m not pacing frantically and that helps a lot. 

I am still fearful of the future and how this setback will pan out. But, I’m trying my best to deal with the rumination and “what if’s”. I’m scared that I’m going to be suffering for a long time. Other times I am a bit more hopeful that with a few more drops in intensity I’ll be able to start living a little again. 

[[Be...]]

On 23/07/2024 at 00:24, [[A...] said:

The last 6 months have been the worst time of my life. I’m not sure how I have survived. The symptoms are far worse than I ever experienced before. I feel like I have CT'ed from a high dose of benzo. The akathisia is severe. Each day is torture. I am completely non-functional and housebound.

But, my fear of making things even worse prevents me from reinstating or taking another drug. I’m not going to lie, there are days I don’t think I can carry on any longer, but I have to. I’ve healed before, I just hope I can heal again. 

Please guys, give me some hope!

I am with you hope is all we can ask 🙏🏼

[[Mo...]]

On 22/07/2024 at 16:05, [[P...] said:

No setbacks so far 9 months out. But i do had akathisia for a few months. 

Pepe, may I ask you what the akathisia was for you, how long it lasted and did it just ‘go away’ by itself?

[[Mo...]]

On 26/07/2024 at 07:49, [[R...] said:

@[Av...] Both Matt Marin and Melissa Boutilier post on YouTube about akathisia recovery. You might find their posts helpful.

I was pacing up to 12 hours a day for 14 months. Akathisia is the only symptom I have had windows from. I am now almost 24 months off benzos and over a year off of the antipsychotic that made akathisia worse. The last time I paced was on Thanksgiving of last year, but I still live with internal akathisia. It is very slight compared to what it was. I have had times where I have had scary internal spikes with chest pressure, and I don't know why - I think it is hormone-related with an underlying drug injury. Sometimes I have little spurts during the day where it feels like a wave, then passes with an ice pack to the chest. I keep one by the side of my bed as these spikes often come between 3-5 am. I ordered one on Amazon called CryoMax that lasts 8 hours. FYI if this works for you.

I am like you; I take NOTHING. Not even an Epsom bath. I have heard of people getting akathisia spikes from grounding mats -- things that seem benign like that can act on nervous system injuries. My pill is time now. I've heard people have spikes from steroid drops and Pepcid. Many classes of drugs cause akathisia.

Alcohol acts on GABA, so I am not surprised that this happened. I have heard another story of alcohol-induced setback causing akathisia years off. Then some people drink and have no issue. Recovery is the Wild West.

Remember, Chris Paige was and still is on two drugs that cause akathisia, and I think that contributed to the longevity of his case. I have not heard many success stories of people recovering on drugs because it is a drug-induced neurological condition. So it is very good that you are off of all drugs.

If I were you, I would never drink again. Just call is quits.

Were you taking olanzapine? It’s what my psychiatrist prescribed me to combat the akathisia I got from diazepam… 😔 Now I’m still on 0.82mg of diazepam ánd 2.5mg of Olanzapine and the akathisia is coming back 😔 

[[Re...]]

7 hours ago, [[M...] said:

Were you taking olanzapine? It’s what my psychiatrist prescribed me to combat the akathisia I got from diazepam… 😔 Now I’m still on 0.82mg of diazepam ánd 2.5mg of Olanzapine and the akathisia is coming back 😔 

No, I was on Seroquel another antipsychotic.