Akathiisa critical

[[Bo...]]

Help I’m on horrific akayhisia . Can’t stop moving all night and no strength . At .007mg of K and no sleep and everything is making it worse. Pleas I don’t know what to do. 

[[Br...]]

I'm so sorry you're suffering this way with akathisia.  I know it's a miserable symptom and like other withdrawal symptom it is temporary.  Time is what it will take for it to fade away.  I have read that some members have found it helpful to take hot showers and take walks outside in nature.  

Are you taking any other meds?

If you haven't already, you will find a lot of past posts if you enter Akathisia into the Search box top right on page.  

[[Bo...]]

I can’t eat sleep walk down to 100lbs. It’s the internal combustion but also the have to

movr. I get in bath and yhay usually helps but now it’s all night and day. I’m enxhaisted 

[[mi...]]

Kristin, I noticed you cut again to .007 from .008. That’s a 12.5% cut when you’re unstable. I really think you might need to consider holding or slightly UpDosing just a tad. You know best but dropping further when you are unstable isn’t seeming to help and seems to be making things worse. Did the aka start right after your last reduction? I really hope you stabilize soon! Rooting for you!

[[Bo...]]

Aka started a month ago and gotten worse after I take my medicine at night and if I take unisom. Think I’m paradoxical to everything… Benadryl worked for first night but second made things worse. 

Im again not able to sleep bc I have all the acute intense brain stuff jolting non stop, aka nerve pain, dry heaving etc. 

I am very fearful bc I can’t get any sleep at all and my body is so drained and weak from no sleep and intense terror. 
seen people say upsizing made them worse and then at higher amount. I am so so lost and terrified. 

[[mi...]]

If you feel paradoxical and are in acute do you think jumping would make it any worse. If you are not getting any benefit at all from the drug maybe allowing acute to continue without the drug will stop the paradoxical stuff. Just thinking out loud. You are much lower than Ashton’s recommended jump dose of .025mg (which is very high for a lot of folks I understand). I don’t want you to rush off it but if it’s giving you zero benefit I wonder if you are prolonging healing with the drug causing more harm than good at this point.

[Guest [...]]

Hi Kristin

As I see it, you have two options… you can jump, or you can hold where you are until the acute symptoms have eased, and then jump. I don’t believe you are experiencing any therapeutic value at all from the 0.007, but maybe psychologically, holding is the right choice until things ease slightly. Then you can  jump. Do whatever you feel is right for you. I would avoid trying medications and supplements in the hope of gaining relief as your body doesn’t appear to be tolerating anything new whilst in the heightened state it’s in right now. It’s very difficult to recognise any improvement when you’re in the deep end, so ask your mother to keep a close eye on you and let you know when she sees improvement. Of course, you’ll know when you get some sleep and AKA eases, but maybe she’ll notice other thing you don’t. These acute symptoms will ease, Kristen. Just hold on tight and ride them out the best you can. 

We’re all behind you… here to support you in any way we can. 

[[An...]]

Hi Kristin, nothing to add that the others have not said. I'm just thinking of you all the time. I know of two others who have had this awful experience at the end of their taper, and it was brutal as you are describing, but they are out of that now and recovering well. It did not persist. Same issues with lots of lost weight, weakness, needing others for care, etc. The whole thing. 

Praying for you ALL the time. 💜💜

[[Bo...]]

Thank you, I’m beyond words. What about going into psychosis… lack of sleep for 4 weeks and I feel so much rage and delirious and crazy terrible thoughts. How do people survive so long like this if they can’t walk to get some of it out. My legs are jello.I crawl and my arms shake and I sob bc my body is so taxed. Thank y’all I am so so so scared bc who can go without sleep for so long, my brain has the non stop jolts which makes impossible. 
My family is terrified and exhausted bc they are up with me all night 

[[al...]]

Dear Boges'  I am so very very sorry you are going through this. It's heartbreaking to hear. I had AKA for 8 months when I came of Klonopin in 2012.  Like you I barely ate or slept .  I lied in a fetal position for much of that time rocking.  I survived .  You will too.  Please keep trying.  God bless you

[[Bo...]]

How does someone go thru this for months and months? I know, what else can be done but survive. I just have been 3 1/2yrs into this down a very slow taper  , I was at .25mg in Nov ‘21 thinking I’d be done that spring. And .25mg now over 2yrs?! and so I’m beyond drained and scared. Im a crying feel super delusional mess.

One night I slept most of night now last night severe aka back. how does one know  if shooosed to go up to try to stabilize bc that can backfire. 

fro someone who never took anything in their life I’m at a loss how I am in this situation. I had 0-3hrs sleep for majority of taper , issues with aka some but didn’t go on for months. Was bedbound with pots last year and then gained s lot of functionality back this spring. Was so much better.

I am so lost and not sure what to do. 

[[Fa...]]

@[Bo...]  How do you feel if you picture yourself moving through this acute phase with the drug being out of your system?  Will it make you feel more empowered...will it offer you a new sense of hope and determination?

From what I have read in @[Wi...]'s reply regarding this, there is no therapeutic value in the amount you are still taking.  So, jumping is a viable option.

When you look at your options, which has you feel the least trepidation while you are in this fear state?  Can you envision yourself in each scenario...what do you feel in your 'gut'?

I do this with each reduction.  You know I am always in a state of fear.  I say to myself 'do not make this decision from a place of fear, but of what I know'.  Because that is the best I can do...it is the best any of us can do.

Each of us will have our own 'version' of 'the best' decision if faced with this.  What matters is what you 'feel'...as best you can in this space.  Try to picture yourself choosing each option, and feel it.  You can do this.  You have been doing this.

Much Love, Kristin.  You've got this.

 

 

 

[[An...]]

I think the above is such good advice. Continuing prayers for this acute phase to pass. I think the fact that you managed some sleep a couple of nights ago is a sign of cns healing and striving for homeostasis. Really hoping you can get another night with some level of sleep. Sending love, prayers, and hope. 💜🙏

[[Bo...]]

@[Fa...] thank yiu so much.

I guess I’ve lost any intuition that I’ve had thru this. I always had a decent gauge on my body, probably too muvh at times, but I steered myself thru so difficult patches. 

I now have lost all sense of what feels best or right …. I have zero gauge and the fear of what I’ve seen out of me in the psychotic akathisia rage is so traumatizing that it makes it so hard to wonder how muc worse yhay can get jumping. Overthinking is what I’ve fallen victim to but would have not been the case if this was 2mo ago. All the ER visits and trying some things to help and then backfiring has just been the worst timing. The point I needed confidence to come off and I’m now questioning everything and so freaked out by what’s happened…. It is so overwhelming  as I know you know. Also the hormonal crazy j go thru every couple weeks is compounding things and it’s so hard to be so intense. I’ve managed all along with hormones being affected during this but with aka and no sleep, it just scares me a lot. I do not want to lose my mind completely.

I used to be a person who had such a good gauge for myself and decision making as im sure so many of us here are. To have zero gut feel for what to do and as important as a decision as this is, it is so dang much for me to process and try to think thru and feel ok with. 
If acute lasted a month or two that would be one thing but I guess it’s of course the not knowing how long to be stuck with this severity is so hard. Last month feels like a year and I’m not off.

I can’t find any stories about being this low and having severe issues to get a gauge and I know we are all so different but it helps when seeing soemnrjh similar. CT or rapid tapers are all I can find but a slow taper where someone crashed at end I can’t find.

Thank you for your kindness and rationality.

[[Fa...]]

@[Bo...]  You aren't 'off'...but, you kind of are from a therapeutic stand-point.  I know the trauma of this has taken its toll...but, you are writing me a message right now.  And, you've been doing searches.  This is a good sign to me.  And, what I mean by that is that you are not in acute AKA right now...you are coherent and functioning...even if moderately right now.

I wonder about the AKA and how it will or will not pop up again in times of stress on our NS.  For example, mine has lessened for a few months.  When I do cuts, when I am in the thick of the symptoms, it pops up again.  I have an episode.  When things 'adjust', it calms again.  This is only speculation on my part, but I was told to expect that as I began my taper again.  So, I braced myself for it.  But, we are never ready for it again...but, I am aware of the possibility always.

I will just say it...at the end of my taper, if I run into AKA, etc., and I were where you are, my decision would be to drop the remaining dose, and move forward.  I've been in the pits of hell, and I'm still here.  As have you before, and you are still here...and, moving through another round.  This time, you are one step away from being finished...no longer with a long road ahead of you to come off.  My up-dose experience was not a good one, so this is where my reasoning is coming from for when I am where you are.  Up-dosing is not guaranteed.  However, full discontinuation is a guarantee of the healing process beginning.

I'm not a risk-taker by nature...not anymore.  But, I do not perceive this as a risk.  I perceive this as a necessary step to begin healing.  And, you've been moving through this for a month already...you've made it through a month of this.

My only advice to you is to find a moment where you are not so acutely symptomatic, and feel into this.  My feelings are not a recommendation, but sharing my thoughts from an outside perspective if I were at the same place as you are.  Life has a way of happening...and, you may see your answer sooner than you think.  Heading to bed now...you're in my prayers, Kristin.

Much Love and Healing,

Faith

 

 

 

[[Fa...]]

@[Bo...]  Checking in...thinking of you...always praying.  When you feel up to it, can you let us know how you have been doing? 

[[Bo...]]

@[Fa...]

 in a bad shape. Things get worse, one day can sleep a bit and then can’t mkve at all next day and just can breathe, then next night no sleep and aka hell all day screaming bc so intense as you know. Get so defeated. Was still at .005mg which I get a little tired after taking and then most nights hell symptoms. Choking jaw feels like it’s spasm but I touch it and it’s not moving.
Yhe pressure feels like it’s suffocating me and swallowing is hard. Brain screaming with mental aka and I know we all hate that so much. I can barely walk around bc so weak but I feel like a child and wide eyed terror stuck in protect mode and can’t see out of this.
about to start period likely in a few days and that is a whole other beast that I’m sure is kicking things up.

I take 1/2 child olly melatonin gummy which is .25mg melatonin and some small amounts of stuff yhay isny recommmeded (passionflower lemon balm but they are at very small amounts the pharmacist said- been on illy gummies most of my taper and tapered down from 3mg to .25mg over last 9monghs bc sleep was getting better)

 so scared and feel like hopeless case at end here and family is exhausted.

Thanks for caring and any thoughts are appreciated. I want to stay alive in this. Intrusive thoughts aren’t something I’ve had to deal with mivh but they are horrific with this aka now.

[[Bo...]]

Thanks to everyone who has been on here. I’m struggling a lot.

[[ia...]]

On 25/08/2023 at 11:22, [[m...] said:

If you feel paradoxical and are in acute do you think jumping would make it any worse. If you are not getting any benefit at all from the drug maybe allowing acute to continue without the drug will stop the paradoxical stuff. Just thinking out loud. You are much lower than Ashton’s recommended jump dose of .025mg (which is very high for a lot of folks I understand). I don’t want you to rush off it but if it’s giving you zero benefit I wonder if you are prolonging healing with the drug causing more harm than good at this point.

This was my next question. I'm almost wondering if maintaining the drug is exaccerbating @[Bo...] your symptoms. (I don't know that for certain - but it's a relevant question) I'm so SO sorry for your suffering. Has it ever been this bad before? (I remember a week or two ago it was really bad - I think you may have gone to the ER?) Are the symptoms about the same as last time - or are they worse? 

[[Bo...]]

@[ia...]

it is worse. I kept pressing ahead lower trying to get as low as I could and it’s gotten worse. It makes me very scared bc I feel so psychotic at times and I’m exact opposite of that. Love all people and all animals and my two dogs now are terrified of me bc I am such a wreck. 
I was decent early July around .025mg and then things started to turn and just overwhelmed beyond words. Especially bc I had improved and was functional for a few months this spring. 
I’m exhausted and feel like I’m slammed over and over snd I’ve already had majority of symptoms thru this ordeal last 3 1/2yrs. I felt much better below .125mg last Sept. and had so much hope I’d ease myself down and things would be more of the same as most report.

brai is on overload and I’m going to try to calm down. Each of these days are so taxing and I get more and more scared about being done and it getting worse bc I don’t know how to make it then.

oh and now getting itchy rashes during the night so I’m sure histamine is wreaking havoc which how the heck do I even worry what to do wit that right now. I’ve been on low histamine and low glutamate foods for 2+ yrs.

[[An...]]

Praying, Kristin. Just praying. I am glad you are talking with Nicole Lamberson tomorrow. I hope she will give some ideas for relief. 💜

[[Re...]]

15 hours ago, [[B...] said:

@[ia...]

it is worse. I kept pressing ahead lower trying to get as low as I could and it’s gotten worse. It makes me very scared bc I feel so psychotic at times and I’m exact opposite of that. Love all people and all animals and my two dogs now are terrified of me bc I am such a wreck. 
I was decent early July around .025mg and then things started to turn and just overwhelmed beyond words. Especially bc I had improved and was functional for a few months this spring. 
I’m exhausted and feel like I’m slammed over and over snd I’ve already had majority of symptoms thru this ordeal last 3 1/2yrs. I felt much better below .125mg last Sept. and had so much hope I’d ease myself down and things would be more of the same as most report.

brai is on overload and I’m going to try to calm down. Each of these days are so taxing and I get more and more scared about being done and it getting worse bc I don’t know how to make it then.

oh and now getting itchy rashes during the night so I’m sure histamine is wreaking havoc which how the heck do I even worry what to do wit that right now. I’ve been on low histamine and low glutamate foods for 2+ yrs.

@[Bo...] I had the uncontrollable itching. Bathing in baking soda helped me. I also used coconut oil and oatmeal in the bath together. It went away, and now it comes and goes every once in a while but is basically gone. You cannot take an antihistamine like a person would with itching, and that makes you feel worse, I understand how it feels to have it since I had it all over my entire body 24/7. I know what you mean about the frustration, like you need one more f**king thing to deal with. I get that from my own experience. I am so sorry but I want to offer you hope that it will go away. I believe it is due to drug's effect on the histamine receptors.  But they will re-regulate.

[[Re...]]

On 25/08/2023 at 08:50, [[B...] said:

Aka started a month ago and gotten worse after I take my medicine at night and if I take unisom. Think I’m paradoxical to everything… Benadryl worked for first night but second made things worse. 

Im again not able to sleep bc I have all the acute intense brain stuff jolting non stop, aka nerve pain, dry heaving etc. 

I am very fearful bc I can’t get any sleep at all and my body is so drained and weak from no sleep and intense terror. 
seen people say upsizing made them worse and then at higher amount. I am so so lost and terrified. 

@[Bo...] I had this with melatonin. I was going to taper it, but then I accidentally stopped it and forgot to take it, which seemed to decrease the akathisia. I want you to know that you are not alone in this experience with a sleep aid.

[[Re...]]

16 hours ago, [[B...] said:

@[Fa...]

 in a bad shape. Things get worse, one day can sleep a bit and then can’t mkve at all next day and just can breathe, then next night no sleep and aka hell all day screaming bc so intense as you know. Get so defeated. Was still at .005mg which I get a little tired after taking and then most nights hell symptoms. Choking jaw feels like it’s spasm but I touch it and it’s not moving.
Yhe pressure feels like it’s suffocating me and swallowing is hard. Brain screaming with mental aka and I know we all hate that so much. I can barely walk around bc so weak but I feel like a child and wide eyed terror stuck in protect mode and can’t see out of this.
about to start period likely in a few days and that is a whole other beast that I’m sure is kicking things up.

I take 1/2 child olly melatonin gummy which is .25mg melatonin and some small amounts of stuff yhay isny recommmeded (passionflower lemon balm but they are at very small amounts the pharmacist said- been on illy gummies most of my taper and tapered down from 3mg to .25mg over last 9monghs bc sleep was getting better)

 so scared and feel like hopeless case at end here and family is exhausted.

Thanks for caring and any thoughts are appreciated. I want to stay alive in this. Intrusive thoughts aren’t something I’ve had to deal with mivh but they are horrific with this aka now.

 

[[Re...]]

16 hours ago, [[B...] said:

@[Fa...]

 in a bad shape. Things get worse, one day can sleep a bit and then can’t mkve at all next day and just can breathe, then next night no sleep and aka hell all day screaming bc so intense as you know. Get so defeated. Was still at .005mg which I get a little tired after taking and then most nights hell symptoms. Choking jaw feels like it’s spasm but I touch it and it’s not moving.
Yhe pressure feels like it’s suffocating me and swallowing is hard. Brain screaming with mental aka and I know we all hate that so much. I can barely walk around bc so weak but I feel like a child and wide eyed terror stuck in protect mode and can’t see out of this.
about to start period likely in a few days and that is a whole other beast that I’m sure is kicking things up.

I take 1/2 child olly melatonin gummy which is .25mg melatonin and some small amounts of stuff yhay isny recommmeded (passionflower lemon balm but they are at very small amounts the pharmacist said- been on illy gummies most of my taper and tapered down from 3mg to .25mg over last 9monghs bc sleep was getting better)

 so scared and feel like hopeless case at end here and family is exhausted.

Thanks for caring and any thoughts are appreciated. I want to stay alive in this. Intrusive thoughts aren’t something I’ve had to deal with mivh but they are horrific with this aka now.

@[Bo...] I was in a similar situation end of June. I understand this level of akathisia from personal experience. I had a similar thing happen when I turned a certain corner on a taper and got below a certain amount. I am going to offer some thoughts for your consideration since you are asking for help.

1. I can tell you that advice to updose or hold did not work for me. I held for six weeks and got worse. I know people try to help with this advice, but it may not help every person. Getting off of all drugs and supplements was the only thing that helped me.

2. In another comment on this post, I mentioned that melatonin was exacerbating the akathisia. I was taking 3mg, and when I stopped taking it along with the Seroquel "for sleep," I actually started sleeping. I was shocked. Nothing is benign with akathisia, so the supplements could also be a culprit, and anything you take could turn on you at any time during tapering. This law applies to everyone tapering any drug, even someone without akathisia. Psychiatric drugs and withdrawal just completely defy any logic or reason.

3. I had to get help tapering and do a blind taper when akathisia was at its worst. I had someone prepare my doses for me under a doctor's care who understood akathisia and drug harm. I can send you a referral if you need one.

4. Speaking with Angela Peacock, who had akathisia and healed, helped me. She is currently doing so well she is at the Burning Man festival without issues. She has many clients with akathisia. She knows about every drug under the sun since she was on 50 and tapered 18 across drug classes, including two benzos. She works on a sliding scale and may be a source of help and support for you and your family. I have had her communicate with my care team at home, which has helped them help me.

4. Your care team/family must keep you away from medical professionals who do not understand akathisia, out of hospitals, rehabs, and ERs while you taper and your body heals. Every doctor I saw, with the exception of the one who tapered me, made me worse. This is a story I hear over and over again from patients who have akathisia. 

5. I stopped checking the forums and only spoke with certain healing buddies. Reading other people's issues stressed me out and the stress was not good for me.

Healing seems impossible right now due to the severity of the symptoms. I know that. I really, truly do. There was nothing anyone could say to me to help me feel better, and I did not think that I would. I still struggle every day. When I was as severe as you, I surrounded myself with people who protected me and helped me pass the time until the pacing ceased for the first time and I could get some sleep. I just had a three-day excruciating spike as you know, but I slept last night, and things seem relatively "better" today so far.

I am now 100 percent off of everything. You are so close to being off of everything too.