Akathisia before I even get started - anyone else?

Hi

 

I feel alone in this.

 

Have constant akathisia caused by polydrugging and cts from various psych meds.

 

Ended up on 1mg Klonopin.

 

Need off.

 

Just started taper. First cut caused akathisia to intensify.

 

Feel hopeless. Heaps of symptoms too from cts last year. Housebound. Severe depression.

 

Anyone tapering with constant akathisia already in play?

 

Need hope.

artistprayer,

 

There is lots of hope for you, although it doesn't feel like it right now.

 

I experienced akathisia from the very first dose of the first psychiatric drug I was ever placed on. It was severe, but I was too young and inexperienced to know what it was... The docs just kept on adding more drugs, saying it was a sign of 'mental illness'.  It went on like this for years.

 

I am almost done tapering the last drug (Ativan). During my taper, akathisia would often come during severe waves, and then improve again in (semi-) windows. I know how awful it is and, like you, I became housebound. I finally decided to see it as part of the healing process, and to just 'go with it' as much as I could. Whenever it hits, I now allow myself to pace, shake my arms, breathe heavily, shout, cry,  release the energy/tension in whatever way I can... In the end, the bouts always leave. They cannot harm you.

 

I can tell you that I've read about others on here who had akathisia during their tapers, sometimes for months on end. They came through it and are healed today, with NO remaining symptoms. Mine is definitely improving - I can see the light at the end of the tunnel. I'm sorry - I know how unspeakably awful it feels when you're in the thick of it. But I hope you can take heart from the fact that it WILL leave, in time. It will all go, and will become just a distant memory for you.

 

You are not alone, and there's truly plenty of hope.

 

 

Rubylove

 

You have no idea what a Blessing it was to find a response to my post and from such a compassionate soul.

 

Did you have it constantly like me? It varies on intensity. Annoyingly I felt it was lowering in January then I was hit by an almighty wave of every symptom and the akathisia went severe. Started with awful violent thoughts and became just hell of control moving and unable to think. I lost all hope after three weeks and ended up going from the 6mg diazepam I’d been on to a whole 1mg Klonopin.

 

I look back and wonder if I’d held on it would have lessened again.

 

Sooo now I’ve got more benzo to get off. Just feel unwell on the drugs and trying to get off.

 

I WISH I could get off the escitalopram 5mg as I know it all started with ssris.

 

I don’t know whether to target that or the benzo now.

 

Feel a long way from being free.

 

I see you had ME?

 

I’ve had it since 2006. It got better 2010-2014 then went downhill and I’m sure it was the escitalopram.

 

God bless, AP

AP, I'm just so glad if I can be of any comfort to you at all. No one should have to suffer like this.

 

There were definitely times for me when the akathisia seemed pretty constant. (BTW, one gentleman on here had it non-stop for a year. His wife said he thought it would kill him. He is well today.) Now it comes and goes. In waves, for me, it's accompanied by many physical symptoms. Mentally, at those times, I have severe anxiety, rage, psychoses. But the bouts are so much shorter and more predictable for me now. That's how I know I'm improving, and that it will end.

 

I was on citalopram years ago. For me, too, it all started with ssris. It's hard to say what you should come off first. Do you feel that the anti-depressant is still 'stabilising' you somewhat (for what it's worth)? If it were me, I'd probably try to taper of benzos first, but perhaps someone else will chime in here... (When I wanted to come off citalopram, I switched to Prozac for it's longer half-life. I tapered too fast, and ended up on benzos for anxiety...sigh. Big mistake, but I didn't know better at the time.)

 

Yes, for me M.E. was almost certainly triggered by SSRIs. I came down with it shortly after I was first put on anti-depressants. I believe it's because psych drugs 'paralyze' the immune system, also by harming gut health... Infections then move in... Since tapering off psych drugs and using natural therapies to restore immune function and gut health, M.E. has never come back for me.

 

You can do this, AP. I know it's a long road and it feels impossible. But one day, when you start getting glimpses of how well you can get and feel again, it will be one of the most beautiful moments of your life.

 

Warmly,

Lara

Thank you Lara.

 

I don’t know if the escitalopram is stabilising me or agitating my system. It’s 5mg but I know it’s potent and I’m on the Mirtazipine too.

 

Gosh the akathisia makes me feel sick. The constant agitation inside.

 

Though I’ve felt nauseous on the k as well.

 

At the moment the benzo is sort of pressing the aka down but it also feels like it’s irritating it with the up and down in the sedation.

 

Thank you for describing what your wants are like. Yes that’s how the akathisia gets for me when it’s severe.

 

My cns just feels super unstable and agitated. Had the aka constant since last June’s cts.

 

Ap

 

 

AP, it feels like such a mess, I know. The thing is to stay as calm as possible and start untangling the threads (sorry, I hope I'm not sounding patronizing - my heart goes out to you, and I wish I knew more to help you, as I've been just where you are...).

 

I would guess, from reading your signature/history, that you've been kindled. Are you familiar with that term? In short, it just means that the CNS becomes sensitized when we go off these drugs and then go back on again. The more we do it, the more agitated/kindled the CNS becomes. That would explain the severity of your symptoms. Please don't let it scare you, however. I was badly kindled, too, but you'll still heal completely in time.

 

I can only tell you what I would do, and we'll hope you get more input from others along the way. I think, if it were me, that I'd probably taper the escitalopram first, followed by the clonazepam. As far as I understand, mirtazipine is sedating (more so than the ssris). Hopefully the mirtazipine will at least mask some of your w/d from klonopin. (It does for some people, but apparently by no means for everyone.) Then tackle the mirt last... And avoid adding any more/new drugs, if possible.

 

In the meantime, I would do my best to soothe and support my body. There are supplements that could smooth over the transition a bit, but it's a journey, as you know... Regardless, you will get there. I'd be happy to share ideas with you as you go along.

Thank you Lara.

 

Yes I’m familiar with the term kindled and that’s just how I feel. Even moreso since following the advice to drop the diazepam and go on clonazepam (I was desperate and regret it).

 

I tend to agree with you. As much as I hate taking benzos everyday, I also want the escitalopram gone.

 

I took up smoking again when all this started, I was vaping before but now am too scared to even change back because of how messed up I am though I know the nicotine is not good for my agitated system.

 

I would hope to be able to taper the escitalopram at a reasonable rate but who knows.

 

Do I wait a bit since I cut the k just over two weeks ago?

 

I don’t even know how much to taper the escitalopram. Maybe .5mg a time?

 

Really appreciate your input and experience. Were you really as kindled and symptomatic as me?

 

It’s the most miserable existence!

 

Can’t enjoy anything.

 

Bless you for helping me.

AP, perhaps wait 2 weeks to a month before cutting/tapering anything more? That would give you a bit of breathing space to formulate some kind of plan, and stabilise a little (if at all possible).

 

If you want to start tapering the escitalopram after that, here's what I would do. I can't advise you on taper rate, as I just don't know enough about tapering that one. (I wish I did.) I would check out some of the following resources:

 

- The Surviving Antidepressants website - post there for specific advice about tapering lexapro.

- Create a new thread on here, asking for advice about tapering off escitalopram (lexapro) specifically. Hopefully a buddy with experience will chime in.

- Possibly consult with Laura Delano: http://recoveringfrompsychiatry.com/ She came off multiple psych drugs herself, and is very compassionate. She has a lot of contacts, and would probably be able to give valuable input.

 

And yes, I think I was probably worse than you! I don't really write about it on here much, as I worry about scaring people... It was unspeakable, and it went on for a very long time - I was so far gone (and inexperienced), I didn't know what was happening... But I'm recovering every day, and the difference is remarkable. So will you!

AP, I just wanted to mention that just now I read somewhere on here that mirt (Remeron) can cause akathisia in some people. So that might be a factor for you. It's hard to know.

 

It might be wise to ask more about this over at Surviving Antidepressants, as well as someone like Laura Delano, as it might impact on your decision regarding which drug to taper first.

 

For me, at some point, I just had to start somewhere. But I was an extreme case. Regardless, you will get there. Sending hugs.

 

 

Thank you Lara.

 

I was on SA site but left as was feeling battered by one of the mods. Also I went against their advice to take the clonazepam, so don’t feel I can go back.

 

They were advising me to taper the escitalopram first.

 

So far the Mirtazipine is the only thing that stops the aka to give me sleep. But I know it can cause it too :/

 

Am so sick. Just took my evening clonazepam dose and am barely sedated. It’s like this with it sometimes it just seems to make me more restless. It gives me nausea too. And I get hiccups (minor point but strange side effect when I take it).

 

Honestly I want off it and the escitalopram now!

 

SA said to make a 10% cut in the escitalopram and see how it affects me.

 

Have looked up Laura’s site and will register.

 

I can’t do this for years my son is growing up (am a single Mum) and I’m missing it.

 

Will hold but I’ve never been stable, certainly since last June but for the year before it too to a lesser extent. How did you judge when to cut when so unstable?

 

I feel like I could do this without the constant akathisia but it’s so exhausting and uncomfortable all the time.

 

Also is akathisia healing happening?

 

With gratitude, AP

 

 

I'm sorry about the SA site. Regardless, you can do this. And I'm glad you've looked up Laura.

 

Considering the advice from SA, I would go ahead as follows, if it were me: first taper escitalopram (10%), then clonazapam, then mirt. You're currently on 1 mg clonazapam - that is not an insignificant dose. (The equivalent would be about 2 mg Ativan, I think. I dry-cut from about 1.5 mg Ativan too fast. I held for 2 months at about 0.16 mg Ativan, stabilised somewhat, but not much, then started a daily liquid micro-taper from there. That made things as bearable as they were going to get. I think the main problem for me was that I'd already dry-cut too fast by then.) A liquid micro-taper from clonazepam might be an option for you - you should get more input here on BB regarding that. Perhaps use Ashton's 10% guideline to get down to, say, 0.5 mg first - that's another option - before tapering slower from there, if necessary?

 

I'm so sorry you're dealing with this while trying to parent. Go easy on yourself - you are giving your son a great gift by doing this! You are going to be so much healthier, stronger and more present for him in the long run, thanks to your courage. Try to hold on to that.

 

Regarding judging when to cut. I saw early on in my taper that I probably wasn't going to stabilise much (probably due to going too fast in the beginning, as well as due to kindling). I thought about up-dosing, but that didn't make sense to me, considering the risk of additional kindling. So I made the decision to bite the bullet and just keep cutting via the daily micro-taper. From there on I've never held. It has been very uncomfortable most of the time, but I've also had decent windows and hopeful weeks. I didn't feel I had much of a choice. And I seem to be healing slowly along the way.

 

Akathisia, like all your other symptoms, will be healing as you taper down. Unfortunately, no one can say how long it will take. But it is happening all the time, even when you can't yet perceive/feel it happening. I know it's hard, but try to trust the process. Many have done this before us, and they are well today. 

 

Just to let you know I think we're on a different time zone. I have to log off now, but I'll check in on this thread again tomorrow. Hang in there! You'll get through this. 

Thanks Lara.

 

I’m gutted as only been on the clonazepam 7 weeks, think have kindled badly as was only on 6mg diazepam before that and the severe aka scared me. Was really hoping I could fast taper it down to .5, I cut 1/4 of my evening.5 pill two weeks ago (so am on .875 clonazepam now) and that’s what’s hitting me now with the akathisia gone up a few notches to v uncomfortable.

 

Wish I could cut it down to .5 and then hold and do the escitalopram.

 

AP

AP, you're very welcome! Keep us updated on your progress.

 

I know it's hard, but be SO proud of your decision to get off. You're doing it!

 

Don't ignore your own instincts in this. Find a plan YOU feel comfortable with, and work it from there. Hang on to it and know you will heal. I'm here if you need more input/support.

 

With love,

Lara

 

 

 

 

Thanks Lara

 

The akathisia is raging in me today all over, that awful feeling like poison all over, and I’m having to do a lot of movements.

 

I’m scared I’ve done more harm kindling by dropping the diazepam and going onto the clonazepam.

 

Not sure I should have cut 2 weeks ago either. Was just desperate to get dose down.

 

I take my morning clonazepam dose .5 and it knocks me out for a couple hours then the akathisia just rages up all day.

 

I’m sorry to write so much I’m just so scared and it’s hellish feeling this way everyday.

 

I’m no better off than when I was on the lower benzo dose.

 

 

 

AP,

 

Akathisia is an awful symptom - it's normal to feel scared! Everyone here who has had it knows the fear. But even the worst cases eventually recover from it. The fact that you write on here and reach out is great, so never feel bad about that.

 

Keep reminding yourself that it cannot harm you. It's part of the brain healing. I don't know exactly how/why it happens that way - perhaps the body trying to rid itself of excess glutamate or chemicals, or the brain trying to re-balance itself - but as long as you're slowly tapering, you ARE healing, even when it doesn't feel that way. It's kinda like a nasty scab: it doesn't look or even feel like healing, but once it drops off, you'll see that you were healing underneath all along...

 

And try not to worry about past kindling. I kindled so many times, even slipping up with alcohol multiple times...it may have delayed my healing a little and made the journey harder, but it did not harm me permanently. It's not permanent. You just need to distract yourself through this hellish time as much as you can, in any way you can - over and over. And when you need to pace, that's OK, too. I would pace until I was so stiff and sore I could hardly move. But the akathisia went away. And it will for you, too.

 

The fact that you don't feel better than when you were on a lower benzo dose, to me means that it would be wise to start a taper when you feel you can. Sending strength, AP. This pain won't be forever, I promise you that.

I forgot to mention, AP, that it might be worth trying to supplement with magnesium glycinate, minimum 200 mg in the morning and 200 mg at night (unless you have kidney issues, in which case you should probably check with a doctor). You can go up to 800 or even 1,000 mg per day. It has helped some buddies on here to get through akathisia (but doesn't work for everyone). It can also help with sleep. It's worth a try, I think. (Almost all of us are vastly deficient in magnesium, as the soil is so depleted now. Also, magnesium is EASILY depleted by ANY physical or emotional stress.)

Thanks Lara, so nervous about trying a supplement. Could be worth a go though. I used to take magnesium a couple years ago. Lots of supplements actually.

 

Yes I go from wanting off the escitalopram to wanting off the benzo.

 

Benzos definitely seem to cause a dramatic peak and drop through the day of the akathisia when it’s severe. I get so desperate I want to come off fast but know that’s not a good idea.

 

Thank you for listening. I just feel years away from any significant healing.

 

Am a zombie with it all right now. And bed or housebound (due to ME I normally have to lie down and kick and move rather than pace).

 

I pray one day I have recovery from the ME too.

Don't worry about being housebound for now (I am, too). Or bed-bound (I was, for a long time). It forces us to nurture ourselves and to rest, as much as possible.

 

And AP, it's very possible to overcome ME. Don't let anyone tell you differently. Once you're strong enough to tackle the underlying issues (gut, immune, infectious), you can do it. It's really just a label they use when they don't know how to treat you...

 

For now, just be as kind to yourself as you can. And start writing a taper plan (no matter how basic/rough) when you have a less agitated moment.

Sending you love. You will get through this.

I did recover once from ME, it was like a miracle!

 

Lara I feel so sick.

 

Because clonazepam is a ‘new’ drug to my messed up system I can’t tell how it’s interactive with the others or if it’s giving me sx. I get so nauseous on it (was happy before the cut I made).

 

Also feel smoking isn’t helping but can’t quit.

 

Have felt so low and disconnected from feelings, family and life for so long since last summer.

 

I’ve worked out a taper plan of 10% cuts of starting dose every 28 days. This would take me til December.

 

I’m ill on this and ill getting off.

 

Housebound for a long time, how do you deal with those feelings of terror, or despair or endlessness of all this?

AP, that's GREAT that you recovered once from ME! That proves that your body is capable of healing - and will do so again! And it's a real step forward that you've formulated a taper plan. Remember to keep listening to your body and intuition, as much as you can. If you feel you need to tweak things on the way down, do that. Your body knows how to heal; you just have to keep supporting it in its efforts.

 

I know you feel sick, my friend. This is the hard part, where you just have to keep putting one foot in front of the other, baby steps, and weather the storm. It's normal for where you're at, AP. As are the nausea and the feelings of disconnection. Those are all effects of the drugs.

 

The despair and terror have been the hardest part of this for me. The physical stuff I can deal with (barely), but when the fear waves hit, it's HARD, I know. I have so many things that I throw at it, when it comes: reading success stories on here over and over again; prayer (even though I can't 'feel' it at all right now); deep breathing and guided meditation, when I'm able to (The Honest Guys on youtube are helpful to me); crying and sometimes screaming when I can't  ; treating myself like a small, scared child; putting together a drawer of soothing things - I call it my 'anti-anxiety kit' (Bach Rescue Remedy, lavender essential oil & a small oil burner, fuzzy socks, vanilla tea, a soft mohair blanket, coconut butter, a CD of nature sounds - anything that makes you feel a bit 'safer' - those things would be very specific to you); visit baylissa.com (she's very helpful); read these recovery tips: www.psychmedaware.org/recovery_tips.html ... I keep a list of things that help, so I have resources nearby when panic hits.

 

What I mean to say is that you'll find your own ways of 'hanging in there' as you go along, AP. Some days they'll help, other days it will feel like nothing much does. But underneath it all you'll be healing anyway!! And more and more, you'll see how strong you really are. And you ARE. You just can't feel it right now. And you'll hang on to those glimpses, and they'll carry you through. Just keep being kind to yourself, keep moving forward... You're doing it!

 

Sending you the warmest hug.

Thank you for sharing your coping strategies. I have joined Baylissa too.

 

The hardest for me is the constant akathisia to varying levels. To never feel any comfort in my own skin and the horror it fills me with when severe and awful thoughts. The feeling under my skin is horrible.I just never have a window from some level or form of it. That’s what makes me most scared. How severe I’ve experienced it. And that was on low doses of benzos. Just been constant.

 

Just makes me cry and shake.

 

I’ve never had a window and it scares me I’ll never have one til I’m off at least one of these drugs and healing.

 

Oh I do go on!

 

I pray all the time.

 

Hugs and prayers

 

 

I don’t know what’s going on. Akathisia is raging most days. Brief lowering yesterday in the day.

 

I was put on a different brand of escitalopram a month ago, made that clonazepam cut nearly three weeks ago, cut 2% escitalopram 5 weeks ago. Dropped the diazepam for the clonazepam over 7 weeks ago. So I don’t know what’s doing what.

 

I feel so sick and the agitation is intense.

 

I’m still wondering if the escitalopram is a big agitator in this.

 

Feeling scared and sick and hopeless.

AP, I'm just now checking in on this thread. I'm right here with you, sweet friend. Bad akathisia for me today and yesterday (my period hit, and it revved me up BIG time). I KNOW how hard it is for you right now. I wish I had the right words to comfort you... Except to say that, in time, it WILL get so much better. Akathisia is one of the symptoms that ALWAYS leaves in the end, for everyone. Right now you just have to try to hang in there.

 

My best guess is that you're dealing with both the klon and the lexapro w/d right now and yes, the escitalopram might well be agitating to you. I remember another buddy who found himself in a very similar situation, AP. He pulled through and is thriving today. I'm trying to read through his old threads to see what helped. I'll let you know what I find.

 

I know you feel hopeless, but there is so much hope for you. I promise you that. I'm right here with you, and I'm hanging on right next to you all the way.

Sent u a pm