Akathisia before I even get started - anyone else?

[[ar...]]

Your words have saved my sanity today Lara. Thank you.

 

Do you think it matters HOW you end up with akathisia? Because mine is a muddle. I know for sure I’ve had signs of it on drugs before it became constant when I ct’d last June.

 

I really do not know what drug I should be focusing on getting off and there are mixed opinions.

 

I don’t get on with the benzos that’s for sure and escitalopram I have a rocky history with.

 

I forget to go on Bay’s site in times of crisis but I will try to remember.

 

I tend to do a lot of crying and repeating reassurances or calling out to God!

 

I tried to find your thread but couldn’t.

 

It’s weird sometimes the crazy agitation settles a bit by late afternoon just before my next dose. Taking the morning dose definitely makes things awful all day. Though I have the aka all the time, it really cranks up after that dose.

 

Anyway. Thank you! So much.

 

I would be interested in gut stuff. Though my yogurt experience was alarming and if it was that that sent my symptoms sky rocketing (and then ended up on more benzo) I don’t know what to do. I started with a teaspoon a day then found myself craving it and eating huge bowls of it each day!

 

My gut is in a mess for sure.

 

God bless you for being there ❤️

 

 

[Guest [Ru...]]

 

I tend to do a lot of crying and repeating reassurances or calling out to God!

 

Ah, you sound just like me, AP! That's what I do all the time. And really, I think those 3 things are all excellent for healing! So we're doing something right. 

 

I don't think it matters how akathisia starts, no. (Mine also started when I first when on ADs, went away for years, and is now back in full force.) Although I'm 99.9% sure it's caused by the drugs (and when you withdraw, the body & mind need to get rid of all those impulses the drugs repressed for years...throw some inflammation/glutamate/cortisol into the mix - and voila! Akathisia).

 

Honestly, I think all these dreadful symptoms are just signs that the body is working to regain balance. The drugs paralyze the gut and the immune system, so, for some of us, multiple infections also move in (hence all the cases of SIBO, candida, ME, gut issues on here).

 

These gut issues cause a cascade of effects, from 'histamine intolerance' to mental symptoms...but, ultimately, the result is massive inflammation. Which then triggers excess glutamate, and on and on... And the poor liver has to deal with the fall-out of all this.

 

So yes, I think it makes good sense to focus on gut & liver healing. In between the aka bouts, what else can we focus on, right?  I'll write stuff up for you on that tomorrow morning. And don't worry, I think I can explain your yogurt reaction! I had exactly the same thing.

 

It will all come right in the end, AP. Keep tapering, keep using Bay's tips... We're gonna do this.

 

❤️

[[ar...]]

I really appreciate the way you explain things.

 

I’m devastated by the level of my benzo intake considering I was on so much less before. Makes me so miserable swallowing the stuff.

 

And it revs me up!! Spend the whole day in hell with it. Just scares me swallowing all this stuff. I wonder if I can manage to taper it down quite a bit this year.

 

You’ve taken it slow to get your benzo down haven’t you? And you were on less that me?

 

Taken my evening dose and I can feel it doing things symptom wise.

 

Thanks again for your support today.

 

Xxx

 

 

[[ar...]]

Dear ArtistPrayer and Buddies,

 

My heart truly goes out to you. I hear akathisia can be one of the most debilitating symptoms of withdrawal... I dearly hope the windows start to outnumber the waves and that you begin to see an improvement in your "baseline".

 

While I can't quite relate to "physical akathisia", I think my rapid discontinuation from ADs (Effexor in particular) has caused me "mental akathisia". I can relate to feeling trapped with nowhere to go, neither in space or time. An urge to do something for relief, but what relief? My mind can't settle, I can't focus on TV or read. BBs posts are usually my limit 

 

When lying in bed, I can't feel "comfort" as I previously used to. It is not totally a physical problem, I think there is a neurological component to that, so perhaps akathisia here too...

 

Akathisia is a truly horrible symptom  :'( But it is only that: a symptom. So it will get better as we heal... 

 

Keep taking good care of yourself... and keep telling yourself that this is withdrawal. Your body and brain are healing 

Hugs 

Julz xx

 

Thank you for writing, Julz.

 

Yes that sounds like akathisia what you describe.

 

Unfortunately mine’s from before withdrawal and the clonazepam was added to try to ‘treat’ it so I’m tapering with it in constant presence (never had a window from the aka). Mine came on previous drugs then through cts so I do pray it will go one day. By lightening my drug load or being free completely one day. 

 

I hope you find relief soon, healing wishes, AP

[[ar...]]

 

I tend to do a lot of crying and repeating reassurances or calling out to God!

 

Ah, you sound just like me, AP! That's what I do all the time. And really, I think those 3 things are all excellent for healing! So we're doing something right. 

 

I don't think it matters how akathisia starts, no. (Mine also started when I first when on ADs, went away for years, and is now back in full force.) Although I'm 99.9% sure it's caused by the drugs (and when you withdraw, the body & mind need to get rid of all those impulses the drugs repressed for years...throw some inflammation/glutamate/cortisol into the mix - and voila! Akathisia).

 

Honestly, I think all these dreadful symptoms are just signs that the body is working to regain balance. The drugs paralyze the gut and the immune system, so, for some of us, multiple infections also move in (hence all the cases of SIBO, candida, ME, gut issues on here).

 

These gut issues cause a cascade of effects, from 'histamine intolerance' to mental symptoms...but, ultimately, the result is massive inflammation. Which then triggers excess glutamate, and on and on... And the poor liver has to deal with the fall-out of all this.

 

So yes, I think it makes good sense to focus on gut & liver healing. In between the aka bouts, what else can we focus on, right?  I'll write stuff up for you on that tomorrow morning. And don't worry, I think I can explain your yogurt reaction! I had exactly the same thing.

 

It will all come right in the end, AP. Keep tapering, keep using Bay's tips... We're gonna do this.

 

❤️

 

Lara

 

I hope you’re seeing a little relief.

 

For some reason I thought it’d be a good idea to make a small cut in the escitalopram yesterday. 3% on top of the 2% I cut in Feb. Am thinking it’s actually having an effect now as certain mental symptoms are up like intrusive memories (not bad but kinda freaky, I’ve had this a lot anyway but seems more) and a spooky sense of the past getting mixed up with the present. Again I’ve had this anyway especially after cting last year but am wondering if I’ve done the right thing :/ just wanted to make a little headway with the escitalopram. That’s a 1/4mg drop now, only 4 and 3/4 to go! Eek.

 

Noticeable mild zappy back of head too.

 

Hey I did some weeding in the garden, exhausting after ten mins but it was a different activity!

 

Just don’t want to push my brain too much with cuts and I know I should only taper one drug. Hmm

 

AP 🌸

[[ar...]]

Well I think I’ve messed up big time.

 

Things got bad last night and I woke up in panic at 4am. I did go back to sleep but panicked this morning and went back to my usual escitalopram dose after two days of the extra cut.

 

I feel rough on top of rough. Scared I’ve kindled even more. Just losing hope I’ll ever be free and that I’ll survive tapering and heal. I feel nauseous but also sick with fear.

 

Akathisia constant as always. No pacing today. But sickening agitation. Not much change there.

 

I can’t do this for years 😞

[Guest [Ru...]]

Dear AP, I’m sorry you’re hurting so badly right now.

 

First, please don’t beat yourself up for up-dosing. This is a time to be kind and gentle to yourself. Simply get up again, dust yourself off, and keep going with your taper.

 

I’ll share with you some of the lessons I’ve found most helpful:

 

1. Learn to trust. Just trust…the healing process (because this is what’s happening when the scary symptoms arise); your body’s innate wisdom to heal itself; God/the Universe/Source… Often when I’m pacing, I’ll repeat the word ‘trust’ out loud to myself, like a mantra. Or I’ll just say it as I go about my daily chores. Even when I can’t feel it at all.

 

2. Accept. Accept that these awful symptoms are the price we pay for reaching the other side. Teach yourself to see them as stepping stones across a raging river…stepping stones to a new life of wellness and freedom. Because that’s exactly what they are! Don’t fight them, and don’t fight the process. It’s like birth…you wouldn’t interfere with the natural birthing process, would you? Well, that’s what’s happening, in a way – you’re birthing a new, better version of yourself. It’s messy, it’s painful…but you will get there!

 

3. Commit 100% to your taper, no matter what. For me, that has been key. No matter how bad it gets, I stubbornly refuse to up-dose, as, in my case, I know it doesn’t help. The only way out, is through. Deep down you know that.

 

Try to nurture the mindset I describe above. One way is by working through Baylissa’s website and reading success stories – over and over, when necessary. It’s a positive distraction, and whatever other distractions you have in your toolkit…work them. And keep going forward. Baby steps. You CAN do this.

 

Sending you light.

 

[[ar...]]

Thank you dear Lara for your calm wisdom.

 

I guess I’m feeling defeated as I really hoped I could get some of the escitalopram dose down alongside the benzo taper. I just can’t bear it that I’ll be at this for years, not knowing what’s causing the akathisia and I don’t know what to focus on.

 

I do want to get off the benzos.

 

I do worry about the escitalopram.

 

I thought I could be one of those people who could taper a bit of both.

 

I’m on SA again and they’re just telling me to hold on everything. I don’t think they know what to suggest as my symptoms are so ‘unstable’.

 

Making that little 3% escitalopram cut and seeing how it impacted alarmed me because I honestly thought that one wouldn’t be so bad to reduce. Now I see people struggling on SA to even drop 1mg over many months.

 

I’m nearly 44 and at this rate I’ll be still at this at 50 and housebound with no life because of symptoms and the ME.

 

If it was one drug I’d be coping better and seeing an end point.

 

I certainly won’t updose again and haven’t on the benzos.

 

This feels like a prison I’ll be in for years.

 

I can see why people rapid taper.

💕🙏

[[ar...]]

Dear AP, I’m sorry you’re hurting so badly right now.

 

First, please don’t beat yourself up for up-dosing. This is a time to be kind and gentle to yourself. Simply get up again, dust yourself off, and keep going with your taper.

 

I’ll share with you some of the lessons I’ve found most helpful:

 

1. Learn to trust. Just trust…the healing process (because this is what’s happening when the scary symptoms arise); your body’s innate wisdom to heal itself; God/the Universe/Source… Often when I’m pacing, I’ll repeat the word ‘trust’ out loud to myself, like a mantra. Or I’ll just say it as I go about my daily chores. Even when I can’t feel it at all.

 

2. Accept. Accept that these awful symptoms are the price we pay for reaching the other side. Teach yourself to see them as stepping stones across a raging river…stepping stones to a new life of wellness and freedom. Because that’s exactly what they are! Don’t fight them, and don’t fight the process. It’s like birth…you wouldn’t interfere with the natural birthing process, would you? Well, that’s what’s happening, in a way – you’re birthing a new, better version of yourself. It’s messy, it’s painful…but you will get there!

 

3. Commit 100% to your taper, no matter what. For me, that has been key. No matter how bad it gets, I stubbornly refuse to up-dose, as, in my case, I know it doesn’t help. The only way out, is through. Deep down you know that.

 

Try to nurture the mindset I describe above. One way is by working through Baylissa’s website and reading success stories – over and over, when necessary. It’s a positive distraction, and whatever other distractions you have in your toolkit…work them. And keep going forward. Baby steps. You CAN do this.

 

Sending you light.

 

Hi Lara

 

I don’t know how to go on with constant akathisia and not knowing if any one or all of these drugs could be causing it. I wish it was clear to me. Here I am tapering the benzo when I was put on it regretfully to control the akathisia. But it can just as much cause it and certainly does in wd.

 

I just don’t know what to do.

 

I see no future as much as I try and I do have dreams for it but I know I experienced the akathisia before the cts that made it constant and I just don’t know how to save myself from it, how it will ever go when I’m polydrugged and struggling so badly.

 

If I knew it was wd akathisia I’d know it will end but I know it was also caused by the drugs or combinations before the cts (it wasn’t constant or as bad as it is now but I realise I experienced it).

 

It’s just a living hell. No one can give me any answers.

 

AP 🙏

[Guest [Ru...]]

AP, I cannot say it any clearer: It's the drugs. And you won't be able to figure out which one(s) are causing it. All you can do in this situation - all any of us can do - is taper off all of it. There is no other choice. And NO other answer.

 

Poly-drugging can make things harder, in theory - but many, many others have come through the exact same thing successfully.

 

There is one thing, one thing only that causes akathisia: the drugs. It doesn't matter whether it's an initial adverse reaction or withdrawal - it's the one symptom that goes away for EVERYONE. No exceptions. IF they get off the drugs. This is why it's vital to read success stories (and I've read hundreds): so you can see the truth of this for yourself.

[[ar...]]

Thank you Lara and I’m sorry if I’m driving you mad with my posts and questions 😕

 

I think that’s my issue, what the heck to keep tapering first. I’m doing the benzo right now. The thing I was stupidly put on to control the akathisia.

 

I’ve read success stories and the best I read was on SA about a lady who healed but she came off five drugs including two benzos all at the same time. And Mark’s story and another I read on here.

 

It’s the wishing I could come off them together I think rather than one, then wds, then the next etc.

 

I’m trying to hold it together for my son as a single Mum and it’s very very hard knowing this is a long term job.

 

Again I’m sorry as you sounded a bit exasperated with me.

 

AP 💕

 

 

[Guest [Ru...]]

My friend, I see so many good things here: the dreams you have for your future, the love for your son... You have all the reasons in the world to do this. And you CAN, AP.

 

I'm sorry - if I sound exasperated, it's for many reasons: knowing how brutal this process can be, yes - the unfairness of it, the suffering on this forum and others. But, especially, because I know that no one and nothing can take this part of the journey away from you or anyone else. The only way out is through. In trying to avoid the suffering, we often just prolong it by making the wrong choices. The only way to 'speed things up', is to accept the pain, and to keep walking through the fire. Some on here have called it purgatory, the fires of purification... And maybe it is.

 

I've seen enough to know there's a world of magic on the other side. A world in which many will never see the same beauty as you, because life has not taught them to see how precious it is. Yes, it's a long journey. But there's a whole new life ahead. The 'easiest' way I know to get to that beginning, is simply to accept, and to keep going. Nurture yourself as much as you can, learn new ways to support yourself through this. You'll come out with so many new strengths at the end of it. And you'll look back and know it was worth it.

 

Sending healing thoughts.

 

[[ar...]]

Thanks for replying Lara.

 

I know I messed up with the Klonopin. I have the support of a benzo charity here who are advising I get off that first. I’ve cut 15% so far in 7 weeks and aiming for another 10% next cut.

 

Do you know people that have tapered both a benzo and ssri together I wonder?

In my boots, what would you be cutting?

 

It was my birthday yesterday and my sister took me to a nearby moorland and it was so beautiful to be in nature for an hour.

 

I was gifted with two beautiful journals and I’m starting to write affirmations.

 

Bless you for your support x

 

 

 

 

 

 

[Guest [Ru...]]

HAPPY (BELATED) BIRTHDAY, AP!  It sounds like you had a beautiful day... I'm glad you could get out to such a lovely spot.

 

Regarding people tapering both an SSRI and a benzo at the same time: I'm sure there are some. I can't think of anyone specific, however. I know Laura Delano came off multiple psych drugs within a 5-month period. (It was almost a multiple c/t.) She doesn't recommend it - it took her a few years to recover, and the risk of seizures is very real...

 

You have to trust your own taper plan, my friend. Everyone is unique - and each person you ask will have different advice. But, since you ask: I would probably be tapering escitalopram first, seeing as it's potentially the most agitating. Dr Peter Breggin has stated that you taper the widely known 'agitators' first, as a general rule, although he also says he sometimes adjusts according to each case. (His website is informative, as are his books on tapering.) He's a lovely, kindly man.

 

[[ar...]]

Thank you for your birthday wishes Lara.

 

Am in severe hysterical akathisia today, a notch up from yesterday which was bad enough.

 

I want to get off the escitalopram but my temptation is to go too fast as can’t stand swallowing it.

 

I’ve heard of Peter Breggin and looked at his website.

 

Kind wishes 💕🙏💕

[Guest [Ru...]]

Thinking of you, AP. I'm so sorry you're struggling so badly... I wish I knew the words to say to ease things for you a little...

 

You're not alone. Many have battled this symptom - and it always leaves in the end. This won't go on forever. Please try to hang on to that...

 

Sending much strength and love.

 

 

[[ar...]]

Thank you Lara

 

I think I have battle fatigue from having this thing non stop for so long Plus all the mental symptoms. Another intense day, in fact they all are apart from about two slots this week where it lowered.

 

My son hardly sees me as I’m in my room most the time crying and pacing or whatever I need to do because of it. Could do with another adult around.

 

How the heck do you decide when to cut something when it’s just non stop?

 

The benzo is letting me sit this evening but as you know the inner stuff remains.

 

Longing for freedom and healing.

 

God bless and I hope you’re doing as ok as can be 🙏💕🦋

[Guest [Ru...]]

Battling badly tonight, too, AP...pain, gut issues, anxiety and uncontrollable rage... Trying hard to breathe and distract through it.

 

On deciding when to cut: As I've never really been able to stabilize (due to all the kindling, cutting too fast initially, etc.), I decided to do daily micro-cuts a year ago. So I've never held since then - not even a single day - as holding doesn't help me. I just decided to keep cutting each day no matter how bad things got. Holding works for many, but it didn't for me. My CNS had already become too sensitized, I think.

 

Every day is a day closer to freedom for us, AP. And as long as we're tapering, we're healing a bit each day. Hold on to that!

 

Sending strength and healing thoughts.

[[ar...]]

Thank you for writing in the midst of your suffering Lara.

 

Been waiting for guidance from SA on microtapering the escitalopram but none forthcoming. Might see about liquid version from gp. Or just dry cut.

 

All pervading desire to taper the benzo too as such high dose and awful drug.

Haven’t cut anything for two and a half weeks.

 

Need progress.

 

Personal care gone out the window, just survival with this akathisia.

 

Praying your symptoms ease off some. Oh the rage and the rest is horrible. You’re so close xxx

[Guest [Ru...]]

AP, holding you in my thoughts...

 

I wish I could help with more info regarding cutting the escitalopram. I just don't know enough about it to offer useful, safe input. Really hoping SA will get back to you. Have you tried general google searches on tapering it (other forums, etc.)?

 

I get exactly where you're at with the personal-care thing. My anxiety around grooming etc. is huge, so I've given up on it for now. Instead, I try to focus on nutrition, drinking lots of water, breathing, meditation, etc. It's all I can do. I live in sweats and don't even brush my hair (never mind washing it)...I just keep it in a ponytail. So you're not alone.

 

Sending a warm hug, AP. We'll both get there. But like you said - this is survival time. We'll crawl through it together. xxx

[[ar...]]

Thank you Lara.

 

Gosh I wonder is it ‘normal’ to be struggling this much with so far to go? Personal care has never really picked up since last June when the cts threw me into hell and akathisia. Thanks for sharing that it’s like that for you too.

 

I don’t seem to be able to do anything but be in my room or bed, squirming around.

 

Can any of this improve before I’m off at least one or two drugs?!

 

I’ve googled tapering the escitalopram and searched and searched but nothing other than a thread on some site where a chap cut .5 mg a month to get off 5mg. Though he was pretty stable and didn’t suffer too much. I’ve seem folks on SA doing 2% cuts and struggling terribly to just get to a 1mg drop! It concerns me that if it were to take 2 years to get off that amount, I’m risking bad stuff from the benzo (which has never agreed with me).

 

My GP is clueless and asks me what to do! As he suggested just doing it in 25% drops! I wish!!

 

Sick sick sick of constant aka.

 

God bless you xxx

 

 

[Guest [Ru...]]

Oh, definitely, it's completely normal for some us, AP! Most of us in tolerance or with kindling experience it that way. Please don't let that scare you. Right now, my fear is the opposite: I constantly worry that I shouldn't be battling this hard towards the end of such a slow taper...

 

I think the only 'normal' is the unpredictability of the whole thing. That's why it's so important to take it day by day. Just focus on doing the tiniest things each day to move you closer. Even if it's 5 minutes of deep breathing, or trying to eat well, or reading on Bay's site.

 

Keep bugging SA, if you have to. You could also try to have a consult with Laura Delano. She's building up a community of resources with knowledge about coming off psych meds. Perhaps a single skype consult? You could also dig around on her site. There might be e-mail references, etc. That's one thing I would probably try, in your case.

 

Don't give up. You'll find something that makes sense to you. Once you do, write it down in your journal, taper steadily, tweak when you absolutely have to, and just keep going... The path will become clearer as you go along. That's what I did.

 

Try not to obsess about the benzo. (Easy to say, I know.) I've seen people who've been on for years, come off easily - and some who were on for 2 weeks, struggle badly. There doesn't seem to be rhyme or reason to it. 

 

There's no one right way. My thinking (but that's just me) was that I wanted to do tiny daily cuts to minimize the shock to my system. In some ways, it worked: I'm doing well physically (with sleep, weight, etc.). I'm looking much healthier than I did in tolerance. But I'm battling mentally, nevertheless. So who knows...

 

Just try to pace yourself and stay safe. You'll make it - I promise you. xxx

[[ar...]]

Thank you again Lara

 

I’m sorry you’re suffering so but you are healing and once off the major healing can begin.

 

I’ve tried to join Laura Delano’s withdrawal project but the form is long and my phone doesn’t allow me to see the full layout so I can’t complete it. I’ll need my laptop but just too agitated to sit at that right now. There doesn’t seem to be a way to email or get a consult.

 

SA are suggesting I hold for 6 months as I’m suffering so and still in acute or post acute from last summer’s mess.

 

Have to admit I’m not coping with the akathisia and fear that I’ll end up like some of the poor folks I’ve read about with it so very bad (which I experienced before).

 

My only phone support is the benzo charity and Ian Singleton there says not to touch the escitalopram as I came off it so fast last year and to leave the reinstatement be for now. To focus on chipping away at the benzo as they do nothing good. I know I hit tolerance v fast with these gaba drugs.

 

I’m shaking so much.

 

Will sign off and wish you healing thoughts today 🙏💕 AP

 

 

[Guest [Ru...]]

You're welcome, my friend!

 

It's so hard to know what to do - it's good that you're getting advice. I think Bay's e-mail yesterday said it well: first you gather helpful, sensible advice (which you've done)...and then you also listen to your own intuition. That's important. I think in tough, tangled cases such as ours, it doesn't matter that much which drug we taper first - as long as we eventually come off, and do so safely. You'll be just fine, AP! Hang in there.

 

Sending you light and a warm hug. 

[[ar...]]

It is so confusing but made worse by the fact I’m struggling to go on with the daily awfulness of akathisia. I literally fight off the worst thoughts every day because it’s taken all my joy from me and I cannot see an end to it. The drugs cause it. Cting has caused it. Tapering makes it worse. But my soul is screaming ‘get off the drugs!!’.

 

Memories are painful and even the next hour is painful let alone any further into the future. My son needs his Mum but I’m this agitated, depressed shell of who I was.

 

I think when things got so much worse in January it was a delayed hit from the cts. Like acute peaking, and that’s still going on under this benzo but the benzo as we know is not a healer.

 

My intuition has been so hard to sense during all of this. Impossible.

 

Even praying brings me no clarity as it once did. Just always ‘get off the drugs’ is what I hear my body cry, or maybe it’s God, or maybe it’s my sheer despair.

 

Maybe I need to stop messing for a while. But I just don’t know.

 

Bay’s emails are beautiful yet somehow I never feel they apply to me because I have this constant akathisia and so meant drugs to get off plus the fact I’ve gone up on benzos. So healing isn’t happening for me.

 

I’m just rambling in my befuddled and sad uncomfortable state. AP X