Nikki74: Lexapro mirtazapine diazepam akathisia

[Nikki74]

1 hour ago, bheb said:

So sorry your night has been awful...probably why this wave is coming on hard. Hang on.

 

Has it calmed at all over the last hour?

Thanks Bheb. No it hasn’t. I’m feeling so hopeless. I need a window. 

 

My Sister took me out for a drive and I cried and was feeling like bursting out of myself. 

 

I need the akathisia to calm or ease or go like it felt like it was at times before this wave. And I had those few hours on Monday when things felt better, not perfect, but like me. Though I don’t think the aka had gone I can’t remember. But it was better for a few hours. I feel like I’m stuck this way. 

[Nikki74]

I smoke and I think it makes it all worse but don’t know what to do. 

 

Scared to try patches or vaping because of other toxins or change in my system by doing that.

[Nikki74]

Reflections:

 

I can see how I ended up being polydrugged.

 

Back in 2009 was put on citalopram as was going into a depression with pure O. I believe this was as a result of long term illness and too much meditation to try to cure myself. My symptoms got worse including weeks of insomnia and  ended up on a high dose of Mirtazipine with clonazepam as needed at night. I’ve no idea how long I used it but don’t think it was long as my sleep returned on the mirtazipine.

 

Over the next year, My ME improved a lot. We moved overseas.

 

2011 Spring, I tapered off the Mirtazipine in a way I thought was slow enough.

 

November 2011 I was hit with a terrifying anxiety one night where I couldn’t swallow. Next day I was put on 15mg escitalopram.

 

I reckon I was hit by withdrawal rather than anxiety at that time, though my drinking was out of control.

 

This was upped gradually to 22.5 over the next 3 years.

 

May/June 2016 I had insomnia and anxiety as was doing emdr therapy. I took Zopiclone for about three nights.

 

July 2016 I’d developed twitching, shaking and anxiety. Due to Zopiclone? 

GP lowered escitalopram to 20mg and added 50mg Trazodone. Or Was I getting a reaction to the escitalopram at this point?! 

 

Anxiety got worse, vertigo, leg weakness, ME got severe, Pregabalin 50mg was added in, start of October. Told to drop escitalopram to 15mg and stop Trazodone (doc thought I had serotonin syndrome as I had over reactive reflexes). I think I was in wd from dropping the escitalopram and side effects from trazodone. 

 

Functioned ok til Jan 2017, had upped pregabalin, got depressed and anxiety up again in Feb.

 

Tried to increase pregabalin April 2017 and think this is when I first experienced Akathisia type symptom but thought it was anxiety from upping the dose.

 

GP added on 15mg Mirtazipine - relief! But I was physically ill and housebound with weak legs and seriously foggy headed.

 

GP said as my anxiety seemed better then maybe I only needed the Mirtazipine so I could come off pregabalin and escitalopram...

 

Three weeks after stopping pregabalin and one week exactly after stopping the escitalopram, all hell broke loose and I think that’s when the akathisia started. 

 

So, 18 months of withdrawals and side effects! No wonder I’m ill.

 

My GP said today he’s never seen anyone react like me to stopping/ changing meds. Though he believes and supports me, I told him there are many people online going through it.

 

I’m really hoping the akathisia goes, despite being on meds still. 

 

I guess I’m always trying to work out if it was caused by a drug, in particular if it was akathisia last July 2016 and not anxiety, and it was in fact caused by the escitalopram ‘turning’ on me. Though I didn’t seem to have it once I started on Trazodone or when I was on the lower dose of Pregabalin.

 

Or if it is a withdrawal issue and will go as I stabilise (rather than being stuck with it). 

 

 

 

 

Edited November 17, 2017 by Nikki74

[Nikki74]

This evening I’ve been much less agitated. Little mini waves of it but then died back down. 

 

Would love to be free of it.

 

I cut out sugar probably a month ago and wonder if I’ve had WD from that?! 

 

I do miss a bit bit of ice cream or a little cupcake...

 

I’m deeply affected by the slightest memory! My son asked me what cars I’d owned. Not only was it a task to remember but it totally triggered my anxiety thinking back and feeling like I’m just not me, the memories of years gone by that just don’t feel my own, does that make sense? Like thinking back makes me want to jump, with nervousness. It’s so bizarre. And deep sadness as I feel my life will not be happy again. 

[bheb]

21 minutes ago, Nikki74 said:

Not only was it a task to remember but it totally triggered my anxiety thinking back and feeling like I’m just not me, the memories of years gone by that just don’t feel my own, does that make sense?

 

Makes absolute sense. I actually just spent the last hour or so being very nostalgic, looking through old photos. It felt like a good distraction but also scary to feel so distant from it.

 

Glad the agitation died down a little. Hope you get some rest tonight

[UnfoldingSky]

7 hours ago, Nikki74 said:

This evening I’ve been much less agitated. Little mini waves of it but then died back down. 

 

Would love to be free of it.

 

I cut out sugar probably a month ago and wonder if I’ve had WD from that?! 

 

I do miss a bit bit of ice cream or a little cupcake...

 

I’m deeply affected by the slightest memory! My son asked me what cars I’d owned. Not only was it a task to remember but it totally triggered my anxiety thinking back and feeling like I’m just not me, the memories of years gone by that just don’t feel my own, does that make sense? Like thinking back makes me want to jump, with nervousness. It’s so bizarre. And deep sadness as I feel my life will not be happy again. 

 

Hi Nikki,

 

I think I had a slight withdrawal from sugar for about four days, when I cut it out. I doubt it would do anything as drastic as the wave you've had though.  I just had bad sugar cravings for four days then for some reason it stopped.  I understand about missing the sweets, I was so into them...but eventually things will sort themselves out and you will be able to again.  I never believed anyone who told me that though!  Thought I was doomed never to eat any more chocolate.  I even sometimes would dream of it, and in one dream could taste a cupcake!

 

Also I get the problem with memories too, I could not connect to things, the combo of pills i took did a hard hit on my memory (vastly improved now from where it was.)  I didn't connect at all with my past basically, whatever I could recall seemed hazy, and so many memories seemed like they belonged to another person or even to some past lifetime. But this bad disconnect can heal, and one day you will feel happier.

 

bheb, I used to do the same with photos, it would help me at first, then I would cry feeling my life was gone.  Now the only one that bothers me really is one I took on a very bad day in withdrawal, I don't know why I even keep that photo!

[Nikki74]

Another bad night. The akathisia seems to ramp up at bedtime now and the Mirtazipine hardly touches it. I don’t know what to do. Nothing helps. My nature sounds don’t soothe me anymore. I don’t know if I can cope with the akathisia and lack of sleep anymore. It’s a terrible agitation in my head and body. I now get weird thoughts and images at bedtime too that I wasn’t getting before.

 

I was getting some relief at bedtime normally and now it’s just horrendous. 

 

My head and body need a rest. 

[Nikki74]

I honestly feel so mentally ill on top of the physical symptoms. I’m just lost. So lost. Feel I’m losing my hold on reality. 

[Nikki74]

Is this dp/dr I wonder? Nothing seems right or real and I feel like I’m not part of real life. It’s very scary.

[Nikki74]

Yes it’s dr/dp I’m sure. It helped to realise that.

 

I am really struggling with the akathisia though. I don’t understand why it’s hardly let up in nearly three weeks. I know no one here can help to magic it away. 

 

This is a very tough wave and it’s hard to see an end.

[Nikki74]

Sorry my posts must be very discouraging for people. 

 

I’m just in a very bad wave and the akathisia is making me distressed. It’s not let up today.

 

It’s hard to put a face on for my son. 

[UnfoldingSky]

10 hours ago, Nikki74 said:

Is this dp/dr I wonder? Nothing seems right or real and I feel like I’m not part of real life. It’s very scary.

 

Hi Nikki,

 

Derealization is basically a feeling like the world is not real just as you described, you feel disconnected, almost like in a bad dream. One tip I read way into my experience if you get this badly is to focus on your sense of touch, that can help ground you a wee bit in reality. 

 

I'm sorry the aka has continued too, and I understand that you so badly need a break. 

 

Thinking of you,

 

US

 

 

[Nikki74]

31 minutes ago, UnfoldingSky said:

 

Hi Nikki,

 

Derealization is basically a feeling like the world is not real just as you described, you feel disconnected, almost like in a bad dream. One tip I read way into my experience if you get this badly is to focus on your sense of touch, that can help ground you a wee bit in reality. 

 

I'm sorry the aka has continued too, and I understand that you so badly need a break. 

 

Thinking of you,

 

US

 

 

Thank you US. I’ll try that. 

 

My Mum spent most of the day with me. It was hard for her to see me in this state. We just held hands a lot. 

 

Im going to try to regulate my smoking as it’s gone up these last few days with things being so intense. I’m proud that I just managed to postpone one by half an hour by focusing on my breathing.

 

I’ve also decided to eat more before bed tonight to see if it helps as the Mirtazipine makes me so hungry after I take it at bedtime, so I’ll see if eating something after I take it helps me to sleep a bit. 

 

I survived another day. 

 

X

 

 

[UnfoldingSky]

2 minutes ago, Nikki74 said:

Thank you US. I’ll try that. 

 

My Mum spent most of the day with me. It was hard for her to see me in this state. We just held hands a lot. 

 

Im going to try to regulate my smoking as it’s gone up these last few days with things being so intense. I’m proud that I just managed to postpone one by half an hour by focusing on my breathing.

 

I’ve also decided to eat more before bed tonight to see if it helps as the Mirtazipine makes me so hungry after I take it at bedtime, so I’ll see if eating something after I take it helps me to sleep a bit. 

 

I survived another day. 

 

X

 

 

 

Hi Nikki, I'm happy to hear your Mom was with you, I get so concerned about you.  I hope she's doing well too though I understand how hard it must be for her to navigate what's happening to you. Good job on holding out for a smoke! Maybe eating a lot of protein before you sleep will help you, something heavy. Praying you get lots of sleep tonight and wake refreshed and calm!

 

Warm wishes,

 

US

[Nikki74]

21 minutes ago, UnfoldingSky said:

 

Hi Nikki, I'm happy to hear your Mom was with you, I get so concerned about you.  I hope she's doing well too though I understand how hard it must be for her to navigate what's happening to you. Good job on holding out for a smoke! Maybe eating a lot of protein before you sleep will help you, something heavy. Praying you get lots of sleep tonight and wake refreshed and calm!

 

Warm wishes,

 

US

Thank you for your concern.

 

My Mum’s in pain and limited physically but at least in remission.

 

I’ve just had a peanut butter roll (natural no sugar) and will force myself to have some chicken at bedtime.

 

Does anyone get free of withdrawal akathisia (assuming that’s what this is) when still on drugs? 

 

[UnfoldingSky]

3 hours ago, Nikki74 said:

Thank you for your concern.

 

My Mum’s in pain and limited physically but at least in remission.

 

I’ve just had a peanut butter roll (natural no sugar) and will force myself to have some chicken at bedtime.

 

Does anyone get free of withdrawal akathisia (assuming that’s what this is) when still on drugs? 

 

 

Hi Nikki, I think I read somewhere that some people who get put on benzos for aka have it eventually leave, though I'm not sure of where I read that.  I'm sorry your Mom's in pain and has mobility issues, my Mom has some residual pain too.  Also I meant to say earlier please don't think you are being discouraging, it's your right as much as anyone's to post here.You deserve to be supported!

 

 

[Nikki74]

I slept a bit better. 

 

But as soon as i I took my morning diazepam I got the akathisia revving up and my legs need to squirm and rub together. 

 

It could have been the escitalopram which I take 45 mins before the diazepam but I noticed as soon as I took the diazepam the akathisia went from underlying and in my head to more noticeable through my body and as I say, my legs starting going.

 

Q. Any ideas on this? 

 

I’m feeling hopeless with the aka and see it as my main symptom. I think it all revolves around that. The looping thoughts, churning, hunger, the terror, depression, shivers, bugs, head buzzes, I’ve even noticed it in my private parts now, the whole lot is associated with akathisia. 

 

No amount of breathing or distraction helps. I just suffer it.

Edited November 19, 2017 by Nikki74

[ChessieCat]

1 hour ago, Nikki74 said:

It could have been the escitalopram which I take 45 mins before the diazepam but I noticed as soon as I took the diazepam the akathisia went from underlying and in my head to more noticeable through my body and as I say, my legs starting going.

 

Q. Any ideas on this? 

 

You could try moving your doses further apart.  If you take one of them an hour later each day and keeps notes on paper you may see a pattern.

[Nikki74]

4 hours ago, ChessieCat said:

 

You could try moving your doses further apart.  If you take one of them an hour later each day and keeps notes on paper you may see a pattern.

Thanks ChessieCat

 

If I move the diazepam to an hour later it’ll mean there’s only a 3 hour gap before my next Diazepam, I’ve been sticking to 4 hour gaps. As I’m so unstable, will this impact me too much? 

 

 

[Nikki74]

18 hours ago, UnfoldingSky said:

 

Hi Nikki, I think I read somewhere that some people who get put on benzos for aka have it eventually leave, though I'm not sure of where I read that.  I'm sorry your Mom's in pain and has mobility issues, my Mom has some residual pain too.  Also I meant to say earlier please don't think you are being discouraging, it's your right as much as anyone's to post here.You deserve to be supported!

 

 

Thank you US. I’m sorry your Mom has pain too. 

 

I dont really think ive had a window from it, just where it’s been less noticeable in my body, but it’s not left my head since this started end of June, just lower level sometimes if that makes sense. I don’t know what to do. I’m trying to believe I’ll be the exception and it’ll go and I’ll stabilise. But if it doesn’t go, I’m not stable and I can’t start tapering.

[UnfoldingSky]

13 hours ago, Nikki74 said:

Thank you US. I’m sorry your Mom has pain too. 

 

I dont really think ive had a window from it, just where it’s been less noticeable in my body, but it’s not left my head since this started end of June, just lower level sometimes if that makes sense. I don’t know what to do. I’m trying to believe I’ll be the exception and it’ll go and I’ll stabilise. But if it doesn’t go, I’m not stable and I can’t start tapering.

 

I understand what you are saying and why you are concerned. I am trying to remember where I read that bit about stabilizing...will have to dig around and see what I can come up with, maybe it will give you a better idea of what to expect. 
 

How are you doing today? 

[Nikki74]

1 hour ago, UnfoldingSky said:

 

I understand what you are saying and why you are concerned. I am trying to remember where I read that bit about stabilizing...will have to dig around and see what I can come up with, maybe it will give you a better idea of what to expect. 
 

How are you doing today? 

Thank you US

 

Terrible agitation all over still today. Just don’t know what to do with myself. Legs squirming. My whole body in great discomfort with it. Three solid weeks now apart from last Monday with a window from a lot of it. Though was still restless but not as bad as the rest of these three weeks. 

 

I’m really struggling. 

[bheb]

5 minutes ago, Nikki74 said:

 

I dont really think ive had a window from it, just where it’s been less noticeable in my body, but it’s not left my head since this started end of June, just lower level sometimes if that makes sense. I don’t know what to do. I’m trying to believe I’ll be the exception and it’ll go and I’ll stabilise. But if it doesn’t go, I’m not stable and I can’t start tapering.

 

 

On 11/19/2017 at 1:32 AM, UnfoldingSky said:

Hi Nikki, I think I read somewhere that some people who get put on benzos for aka have it eventually leave, though I'm not sure of where I read that

 

Hi Nikki,

 

i might be wrong, but unless you're having a paradoxical reaction to the benzo, I don't think you have to worry about tapering it in order to heal from akathisia. Maybe you'll have to be on it for a while, but as long as you don't tamper with it now, it shouldn't be throwing your nervous system into further distress. 

 

But that's just my theory/information I've picked up around here. I think I also read what US may be looking for. 

 

I'm in the same boat -- put on a benzo for aka and waiting to resume tapering. 

[Nikki74]

24 minutes ago, bheb said:

 

 

 

Hi Nikki,

 

i might be wrong, but unless you're having a paradoxical reaction to the benzo, I don't think you have to worry about tapering it in order to heal from akathisia. Maybe you'll have to be on it for a while, but as long as you don't tamper with it now, it shouldn't be throwing your nervous system into further distress. 

 

But that's just my theory/information I've picked up around here. I think I also read what US may be looking for. 

 

I'm in the same boat -- put on a benzo for aka and waiting to resume tapering. 

Thanks Bheb. I don’t think I am getting a paradoxical reaction but I know when I was on a higher dose it did anything but calm me down, so Shep thought maybe it was causing a paradoxical reaction at a higher dose. Though I was also on Zopiclone then I think or had just come off it (another ct and was told by psych to use diazepam to come off it!) and it could have been reacting to that, too many sedating drugs.

 

I know you’re in the same boat and I’m sorry you are. 

 

Up until til three weeks ago the aka was easing off here and there each day, not going completely but the physical side I was getting breaks from. Then this wave and it’s not let up (apart from that short window of things easing one day).

 

Have you had worse waves of it then lower level ‘windows’? 

[bheb]

Ah I see. So I guess you're wondering if it can still cause a paradoxical reaction at a lower dose?

 

About waves and windows, yes I have. I had pretty constant aka from January to September. I had my first window in early September, and thought I was turning a corner before I had some new stress/encountered some benzo wd. So about 4 days or so of something like a window, and then constant akathisia since that ended. However, I have had micro-windows of maybe a couple hours or so randomly. 

 

You say the physical side eased up, what was left mentally?

[Nikki74]

32 minutes ago, bheb said:

Ah I see. So I guess you're wondering if it can still cause a paradoxical reaction at a lower dose?

 

About waves and windows, yes I have. I had pretty constant aka from January to September. I had my first window in early September, and thought I was turning a corner before I had some new stress/encountered some benzo wd. So about 4 days or so of something like a window, and then constant akathisia since that ended. However, I have had micro-windows of maybe a couple hours or so randomly. 

 

You say the physical side eased up, what was left mentally?

Yeah I don’t know, I doubt it is paradoxical as towards the end of October I had a spell of lowered agitation to be replaced by fatigue and depression and the diazepam made me sleepy then, so in effect it was doing what it’s meant to do.

 

So I’d get zero physical agitation during some days (a few! Not many),  the tummy churning went, and it was more fatigue. But I still couldn’t really concentrate on much so think I still had a mental element to it. Then I had a couple of days where I felt positive in myself but was sort of mildly manic (if there is such a thing!) achieving a few things around the home, then this wave hit! And the aka has been much stronger and constant plus extra stuff like shivers and flu feeling, terror in waves. I thought it was because of my cycle but that came and went and it’s stayed the same.

[Nikki74]

Well another day of full on aka (internal restlessness, buzzing, inability to stay in one place for long, electricity in right hand and arm). 

 

I did some chores which wore me out but couldn’t get rest.

 

Couldn’t eat much.

 

Tried to distract with tv but just can’t focus.

 

I phoned a helpline for support (a UK one called Battle Against Tranquilisers) and the very experienced lady said the aka would likely be my main symptom throughout. This left me feeling worse! She said it should level out a bit eventually...

 

Just trying to calm myself.

 

 

[Staz]

2 hours ago, Nikki74 said:

Well another day of full on aka (internal restlessness, buzzing, inability to stay in one place for long, electricity in right hand and arm). 

 

I did some chores which wore me out but couldn’t get rest.

 

Couldn’t eat much.

 

Tried to distract with tv but just can’t focus.

 

I phoned a helpline for support (a UK one called Battle Against Tranquilisers) and the very experienced lady said the aka would likely be my main symptom throughout. This left me feeling worse! She said it should level out a bit eventually...

 

Just trying to calm myself.

 

 

Hi Nikki,

I go to the Battle Against Tranquilisers support group as they are local to me in Bristol. The lady you spoke to was probably Una Corbett who has walked the walk with Benzos. I know her well. She doesn't pull her punches or sugar coat things which is good imho. Working with them I've a taper plan for reducing my diazepam but won't be starting that until I'm off quetiapine/seroquel which I've now got down to 35mg from 150mg. I've got 12mg diazepam to get off of and B.A.T. go slower than the Ashton method which in their experience has a greater success rate. You're z drug and diazepam (they are basically the same as far as w/d's are concerned) seems to have fluctuated a lot over the last few months. My advice to you would be to stabilise and make no further changes in meds for the next few months as like me you are poly drugged and will need to deal with one drug at a time. My first to go was pregabalin and I notice you have been on that a good while. I took me 6 painful months to get off and aka was and is one of the main w/d symptoms i encountered and pregabalin w/d was awful and I've not fully recovered from it yet. I know of people who've taken pregabalin and tapered and it take 8 months plus to recover from and is every bit as painful as benzos to come off. Get stable. Take your meds at the same time each day and don't make anymore changes for a few months and see how you feel. If you want to come off the benzo first and Z drugs then BAT will talk to you and send you a taper schedule and care plan to take to your GP. It will have dose reductions on it but no timescales at all. They recommend 10% reduction on your last dose with a minimum of 3 weeks between drops. I strongly recommend you follow there advice as I've seen their success's with my own eyes. I'm not tapering my benzo yet simply from a harm perspective as anti psychotics are far more harmful and risky to be on than benzos but my benzo will be next. xx

[Nikki74]

47 minutes ago, Staz said:

Hi Nikki,

I go to the Battle Against Tranquilisers support group as they are local to me in Bristol. The lady you spoke to was probably Una Corbett who has walked the walk with Benzos. I know her well. She doesn't pull her punches or sugar coat things which is good imho. Working with them I've a taper plan for reducing my diazepam but won't be starting that until I'm off quetiapine/seroquel which I've now got down to 35mg from 150mg. I've got 12mg diazepam to get off of and B.A.T. go slower than the Ashton method which in their experience has a greater success rate. You're z drug and diazepam (they are basically the same as far as w/d's are concerned) seems to have fluctuated a lot over the last few months. My advice to you would be to stabilise and make no further changes in meds for the next few months as like me you are poly drugged and will need to deal with one drug at a time. My first to go was pregabalin and I notice you have been on that a good while. I took me 6 painful months to get off and aka was and is one of the main w/d symptoms i encountered and pregabalin w/d was awful and I've not fully recovered from it yet. I know of people who've taken pregabalin and tapered and it take 8 months plus to recover from and is every bit as painful as benzos to come off. Get stable. Take your meds at the same time each day and don't make anymore changes for a few months and see how you feel. If you want to come off the benzo first and Z drugs then BAT will talk to you and send you a taper schedule and care plan to take to your GP. It will have dose reductions on it but no timescales at all. They recommend 10% reduction on your last dose with a minimum of 3 weeks between drops. I strongly recommend you follow there advice as I've seen their success's with my own eyes. I'm not tapering my benzo yet simply from a harm perspective as anti psychotics are far more harmful and risky to be on than benzos but my benzo will be next. xx

Thanks Staz.

 

im glad you can get to the support group. Una is v nice but I spoke to her before and she was more positive.

 

I ct’d pregabalin (June) and Zopiclone (sept) which together with cting escitalopram (though reinstated) and the initial benzo chaos, has left me incredibly ill. I’ve stuck on same dosing and times for 7 weeks which is nothing I know. It’s the akathisia both physical and terror aspect that is pushing me hard. I’m disabled with CFS with fatigue on top. But the aka means I can’t rest. 

 

Do you still have akathisia and how do you cope with it?

 

Does Una say you’ll stabilise? She was a bit vague as to whether I’ll be ok, just said I’ll level out and it won’t be as bad as now.

Edited November 20, 2017 by Nikki74

[Staz]

3 minutes ago, Nikki74 said:

Thanks Staz.

 

im glad you can get to the support group. Una is v nice but I spoke to her before and she was more positive.

 

I ct’d pregabalin (June) and Zopiclone (sept) which together with cting escitalopram (though reinstated) and the initial benzo chaos, has left me incredibly ill. I’ve stuck on same dosing and times for 7 weeks which is nothing I know. It’s the akathisia both physical and terror aspect that is pushing me hard. I’m disabled with CFS with fatigue on top. But the aka means I can’t rest. 

 

Do you still have akathisia and how do you cope with it?

Yep I still get aka but it's lessening the more stable I become and the more time I put between me and pregabalin which I believe to be one of the main culprits for aka. I know what you mean as my brain and body find it hard to relax. I can't remember the last time I felt relaxed tbh but it is improving. I've managed by doing what's the hardest thing to do when you feel like we do and that is finding myself some voluntary work to do a few days a week. It has stopped me from sitting in the house obsessing about my symptoms all day. I've found this beneficial but struggle on the days I'm not volunteering. After the Z drug and benzo chaos not to mention the pregabalin I'm not surprised you feel the way you do. I really think eating well, a bit of exercise and med stability for at least 3 months is what you and your battered cns need. It's reduced my aka to a manageable level and it's slowly reducing in it's intensity atm. I still get the terror on waking and find the mornings particularly tough but time seems to be improving very slowly. I'm afraid there is no magic bullet but you need to accept and understand it will take a while to settle given all the changes you have made in Z drugs, benzos, pregabalin and ssri's over the last few months. This is probably not much help to you right now but just knowing others are and have experienced what you are going through and have come through it was a big help to me. Take care and PM me if you have any other questions etc. Don't overlook the w/d's from pregabalin either. They can be long lasting and aka is one of the w/d symptoms. xx

[Nikki74]

1 hour ago, Staz said:

Yep I still get aka but it's lessening the more stable I become and the more time I put between me and pregabalin which I believe to be one of the main culprits for aka. I know what you mean as my brain and body find it hard to relax. I can't remember the last time I felt relaxed tbh but it is improving. I've managed by doing what's the hardest thing to do when you feel like we do and that is finding myself some voluntary work to do a few days a week. It has stopped me from sitting in the house obsessing about my symptoms all day. I've found this beneficial but struggle on the days I'm not volunteering. After the Z drug and benzo chaos not to mention the pregabalin I'm not surprised you feel the way you do. I really think eating well, a bit of exercise and med stability for at least 3 months is what you and your battered cns need. It's reduced my aka to a manageable level and it's slowly reducing in it's intensity atm. I still get the terror on waking and find the mornings particularly tough but time seems to be improving very slowly. I'm afraid there is no magic bullet but you need to accept and understand it will take a while to settle given all the changes you have made in Z drugs, benzos, pregabalin and ssri's over the last few months. This is probably not much help to you right now but just knowing others are and have experienced what you are going through and have come through it was a big help to me. Take care and PM me if you have any other questions etc. Don't overlook the w/d's from pregabalin either. They can be long lasting and aka is one of the w/d symptoms. xx

I’m glad it’s lessening for you Staz.

 

Mine’s intense 24 hours now with waves of extreme terror. My legs need to rub and move, ticking all over inside and electrical buzzes on my right side at times. 

 

Unfortunately I’m housebound and can barely walk with me/CFS and the akathisia makes it v uncomfortable to be with people. 

 

 

[powerback]

3 minutes ago, Nikki74 said:

I’m glad it’s lessening for you Staz.

 

Mine’s intense 24 hours now with waves of extreme terror. My legs need to rub and move, ticking all over inside and electrical buzzes on my right side at times. 

 

Unfortunately I’m housebound and can barely walk with me/CFS and the akathisia makes it v uncomfortable to be with people. 

 

 

HI Nikki have you ever tried forcing yourself to watch comedy or listen to upbeat music when this terror comes over you ,when I'm out and feeling very depressed I force myself to listen to this kind of music ,it helps somewhat .I know its not always that simple .

Take care 

PB

 

[Nikki74]

24 minutes ago, powerback said:

HI Nikki have you ever tried forcing yourself to watch comedy or listen to upbeat music when this terror comes over you ,when I'm out and feeling very depressed I force myself to listen to this kind of music ,it helps somewhat .I know its not always that simple .

Take care 

PB

 

Thanks PB.

 

I haven’t tried the upbeat music as I think it would raise my agitation but I’ll try. I keep comedy on tv a lot but when I’m in the terror all I can do is cry hysterically til it passes. If I can I’ll speak to my friend who experiences similar things and he’ll just listen to me cry and reassure me.

[Nikki74]

List of current daily symptoms, for the record:

 

Agitation

Internal restlessness 

electricity feeling sometimes 

mental terror (akathisia, all of the above)

Severe memory impairment both long and short term

Inability to focus on anything for more than a couple of mins

churning stomach

brain zaps

head pains

overactive bladder

upset bowels

severe fatigue

leg weakness

vertigo

anxiety

depression

irrational fears 

intrusive memories 

looping thoughts

panic

confusion

poor fine motor skills 

impatience (not me!)

distress

heartache

crying spells 

anger

anhedonia (sp?)

dr/dp

SI

 

[Nikki74]

Q. Is there ANYTHING I can do to help the akathisia?

 

It is becoming unbearable. 

 

I’m trying the best I can.

[AliG]

Hey Nikki. ~ I have seen you winding yourself up lately and I really can't offer any other advice except to : stay as you are. However, If it were me I would try to start tapering  off the diazepam as you can, because you already have the Mirtazapine at night.