HiddenGems: Poly drugged, akathisia, and paradoxical responses

[HiddenGems]

My name is Brian. I’m 27. I have spent the last 18 months trying to endure severe akathisia and adverse drug reactions. I was reluctant to write here but perhaps this can be seen as I continue to try and save my life. My problems started at the end of 2019 I had went on and off Prozac probably 10 times due to sexual dysfunction. Doses ranging from 10mgs to 20mgs, I was also on 1mg of Ativan for 6 years prior and am also on 22.5 of Mirtazapine consistently since 2017.

 

Well at the end of 2019 my psych thought going over to 1mg of Klonopin would be a good choice as I was becoming tolerant to Ativan (it still worked just not as well). After a month on the Klonopin i became very very depressed (SSRI withdrawal unknown and combined with the now heavy Klonopin) I eventually reinstated 10mgs of Prozac (the depression left immediately)  and then 2 days later went back to Ativan 1mg. Well that was the ultimate blow. Within 2 days I had to admit myself to a psychward because I felt the unbearable sensation that I was jumping out of my skin. This is the most painful level of agitation I’ve ever endured and how I continue to endure it idk. Maybe because I want to live again and I know suicide will forever stop that. Anyways as soon as the Ativan wore off the akathisia would rebound. It was clear this wasn’t a option anymore. I eventually switched over to Valium in hopes to permanently level out then taper. It never happened. Within a few weeks I was vomiting, and tremoring and experiencing burning skin the Valium never offered relief.

 

By accounts of my current psychiatrist I’m paradoxical to benzodiazepines now. As a result I’m trying to taper. This is a absolute nightmare as the akathisia is still there and removing the benzodiazepine and paradoxical response is making it worse. I have many days I can’t even focus to type or read as I feel a awful sensation like I’m being ripped out of my skin. This combined with the full body burning due to the tolerance of the benzo makes every day a marathon of tears and survival. Praying I can get out of this. However I’m getting worse.

 

My psychiatrist is at a loss and agrees this is a akathisia like response or complete hyperarousal of the CNS. It could be the benzodiazepine or the Prozac or both. I rely on total care from family as I am 100% disabled with akathisia and benzo tolerance. But I’m still alive. Soon to see a neurologist. I haven’t eaten in the daytime in 10 months. I can only eat and sleep when I take Mirtazapine at night which is keeping me alive.

 

I’m down to 4.3mgs of Valium and I’m still on 20mgs of Prozac. We wish to remove the Prozac to see if reduces the jumping out of skin agitation. But being tolerant and paradoxical to the benzodiazepine is making me forced to taper it. I held my dose for 45 days recently to try and let the severe akathisia calm down and well it did however. I developed myclonus, vomiting, tremors, restlessness and blurred vision.

 

My body was actually shutting down so I reduced 4 days ago from 4.4 to 4.3 of Valium. And that was enough to start reducing some of those psychical  symptoms. However now it’s about how do we manage the agitation and akathisia? My doctor had encouraged me to seek out answers as this is all something he’s never seen. We see each other every 2 weeks as he’s severely concerned with my deterioration and says we may have to try something drastic. Idk what to do. I just want my life back. I’ve been fighting akathisia for so long and I’m tired. Mirtazapine reduces the agitation enough for me to eat and sleep and is the only way I’m still alive. The agitation of akathisia can get so severe I pull my hair, hit my head and legs and sob because it’s agony. Yes 18 months of severe akathisia. My will to live I understand is very very strong. Thoughts?

Edited July 20, 2021 by Altostrata
added line breaks

[arbor]

Welcome @HiddenGems to SA.

 

I'm so very sorry to read what you've been going through and had to endure.  I'm struck by your strength and endurance.  Unfortunately, your symptoms are not unusual as you can read on this site.  These drugs and their withdrawal are very powerful.  Their effects are poorly researched and not well understood.  You will heal, but we can't predict how long it will take.  The damage is not permanent but we can't predict how long it will take for you to heal.  Some people return to normal fairly quickly while others take longer.

To get you started and to be able to give you the best information, we ask members to summarize their medication history in a signature -- drugs, doses, dates, and discontinuations & reinstatements in a concise list format.  

Account Settings – Create or Edit a signature.

 

I've brought your situation to the attention of the rest of the staff.  I'd also like to give you some links that explain our approach to tapering. 

Why taper by 10% of my dosage?

Important Topics in Tapering

 

Some of your reactions like 

44 minutes ago, HiddenGems said:

vomiting, and tremoring and experiencing burning skin

44 minutes ago, HiddenGems said:

akathisia

and agitation, sound like they could be related to the changes in your doses of Prozac.  To move toward stabilizing your CNS, we usually recommend starting tapering (or if, warranted, reinstating) with the antidepressants, in your case, Prozac before benzodiazepines.  My sense is that your reinstatement of Prozac is at too high a dose and may be overstimulating your system.  Since the Mirtazapine is helping with the agitation and sleep, it could be dealt with later down the line.  We also suggest tapering very slowly and only one drug at a time.  Here are links you might find useful.   

 

The slowness of slow tapers 

Tips for tapering off Prozac

Considerations About Stability Stop Jumping Around

 

I don't want to over burden you with reading, as I imagine it's not easy to concentrate for you right now.  At the same time there are invaluable tips in the Self care section that I encourage you to browse.  They offer nondrug methods of coping with the outrageous situation you describe so well.   

symptoms and self care

 

This is your Introduction site where you can ask questions and connect with other members.

I'm glad you've found us. 

Arbor

[HiddenGems]

@arborThank you. You wouldn’t believe this toll on my body self and family. I agree (even my doctor does) that this is generating from the Prozac. I had kindled myself badly in 2019. Between 20 mgs and 10mgs (Don’t forget most literature says you can stop 20 mgs of Prozac and that’s what I thought to be true.) when I reinstated I blamed the response on the Klonopin ct as soon after the akathisia developed. But from my understanding akathisia like this is usually from a ssri or antipsychotic. I’ve been on 20 mgs for about 16 months now. However being tolerant and paradoxical to the benzodiazepine has me forced in a corner that I need off it first which is really complicating matters. Ty such as Benzodiazepines aren’t a good treatment for akathisia and very well might be contributing. 

[Altostrata]

Welcome, @HiddenGems

 

I am sorry you're going through this. It is unfortunate that your psychiatrist doesn't know what to do, but at least he is sympathetic.

 

To help us out, follow these instructions Please put your drug and withdrawal history in your signature You may need to use a computer to do this.

 

How long had you been off Prozac when you did this?

2 hours ago, HiddenGems said:

I eventually reinstated 10mgs of Prozac (the depression left immediately)  and then 2 days later went back to Ativan 1mg. Well that was the ultimate blow. Within 2 days I had to admit myself to a psychward because I felt the unbearable sensation that I was jumping out of my skin. This is the most painful level of agitation I’ve ever endured and how I continue to endure it idk. Maybe because I want to live again and I know suicide will forever stop that. Anyways as soon as the Ativan wore off the akathisia would rebound.

 

How often did you take Ativan 1mg in a day? What makes you think you are in tolerance from the benzo?

 

When did you increase to 20mg Prozac? What happened then?

 

What is your current daily drug schedule? Please keep daily notes of times of day you take your drugs, their dosages, and your symptoms throughout the day. We need to know how you feel before and after taking each drug, and your symptoms in between. Post 24 hours of notes at a time in this topic, in a simple list format with time of day on the left and notation (symptom or drug and dosage) on the right. This can show if your symptoms are adverse effects from one of your drugs.

[HiddenGems]

@AltostrataWhen the floodgates of hell resumed after the hospital I went to 20 mgs again very end of 2019. Nothing changed akathisia wise and if it did it wasn’t  immediate. I also switched to Valium during that period to escape the rebound Ativan akathisia. Which In a sense I did but instead the akathisia eventually became 24/7. Tolerance withdrawal set in very very fast. However rapidly tapering the Valium throws gasoline on the already burning fire of akathisia. The past 6 months I’ve been a very hysterical man. Akathisia for me also Is this horrible mental sense of impatience and urgency which can be maddening and very distressing. As a result I don’t leave the house except for appointments and can’t handle stimulation because everything stimulating makes it more unbearable. 
 

2pm 2.1mgs of V. - within 2 hours skin burns with electricity and parathesia even worse. Electricity and parathesia often peaks around 5 or 6 and leaves me in tears. 

 

8pm 2.1mgs of V, 22.Mirtazapine and 20 Prozac - Some peace, eat, 

 

Same schedule for 18 months. 

[HiddenGems]

And I was off Prozac for maybe a full month tops. I was never off for a long time since I started it in 2017 for depression. For a good while I believed this to be strictly a benzodiazepine problem due to it appearing after going off the brief period of Klonopin back to Ativan. I’ve researched as much as I possibly could and in specifics this type of akathisia (Jumping out of skin) Is only reported with SSRIs or antipsychotics. However with adverse responses from the Benzodiazepine now it’s hard to say. There’s just no reports or personal accounts I’ve found of a benzodiazepine specifically doing that in a very very slow withdrawal. 

[Altostrata]

We need to see that history in a simple list form -- when did you start what drug, how much you were taking, when did you increase it.

 

Also need to see those daily notes as requested above.

[manymoretodays]

Hi HiddenGems,

Any improvements?  Your description of present existence sounds so very tough.

Just checking in and wondering if you can do a couple things to help us out:

1. Signature

How to List Drug History in Signature

and then 2.

 

On 7/20/2021 at 5:54 PM, Altostrata said:

What is your current daily drug schedule? Please keep daily notes of times of day you take your drugs, their dosages, and your symptoms throughout the day. We need to know how you feel before and after taking each drug, and your symptoms in between. Post 24 hours of notes at a time in this topic, in a simple list format with time of day on the left and notation (symptom or drug and dosage) on the right. This can show if your symptoms are adverse effects from one of your drugs.

 

Just click on the underlined passages to go to the links, that give more information, and "how to's"

 

Oh, so hoping you are getting some, if even moments of relax as well as comfort, in each day.

 

Best.

Love, peace, healing, and growth,

moderator manymoretodays

[HiddenGems]

@manymoretodaysSuch poor condition can’t post. Can’t log. It’s a marathon of survival. Thank You for asking. 

[Altostrata]

It appears you may be taking TOO MUCH diazepam. But we need that additional information from you to make sure. 

 

As this is only an Internet forum, asking you to type the information out is the only way you can communicate to us the information we need to make any informed guesses that might help.

[Neon]

I am not a moderator and I dont know a lot but I am also going through aka atm. I noticed that with Diazepam it becomes actually stronger and with Ativan it lowers the level of akathisia. Of course it rebounds as soon as it wears off so I dont know what I am gonna do about it but maybe changing to Ativan instead of Prozac and taper that could give you some relief?

[HiddenGems]

Still alive. Continuing to taper the Valium as I’m paradoxical. Down to 3.84mgs. Akathisia is still present and off the chain. Severe agitation and restlessness. Very distressed by severe sound sensitivity I’ve developed. I can’t handle noises without wanting to rage or cry. It’s like misophonia but I think it’s a direct result of akathisia. Idk. Holding onto dear life.

[HiddenGems]

Thank you for some of the messages and responses. I appreciate it. Again my condition is really barbaric. But I’m going to try to post as I can because maybe one day this can help someone else. Aka developed upon reinstatement of Prozac after a CT. But was covered by Benzos until I started getting paradoxical responses (which lessen as I slowly taper) but the underlying akathisia is fully  unmasked. Spent today 9/18 pacing around in a restless manic like agitated state. Body is stuck in fight or flight/akathisia until I dose Mirtazapine at 7pm and shockingly the sedative effect of the Mirtazapine reduces all of this to the point I can be rational and go to sleep. However upon waking. It’s all back.

 

Dosing schedule is the same everyday. 

 

2pm Diazapam  1.8ish

7:15pm Diazepam 1.8 with 22.5 of Mirtazapine and 20mgs of Prozac (Relief. I can then eat something and even watch a bit of tv and sleep)

[Marykay157]

How long ago did you reinstate your prozac?  I've been trying to get back on prozac 4.5 months and still having anxiety and depression and insomnia.   I'm going to have to taper off it. That and the klonopin my Dr gave me to help with the anxiety and insomnia 11 weeks ago.  

[HiddenGems]

I have an appointment with my psych here In a few days. Trying to figure out what to say to him and come up with a solution. Part of me thinks if Akathisia is coming from Prozac I need off it ASAP. But the catch 22 is the damn benzo is in the way and I can’t use them as a crutch to shield the akathisia. Someone asked me how it was decided I was paradoxical to the benzodiazepine. Well that’s easy to answer if I hold a dose too long within 2 hours of dosing I’ll vomit, have mild seizure like activity, and I’ll burn head to toe in this cactus like acid burn. THAT horror has lessened  as I tapered it and I’m no longer getting violently sick like I do when I hold. However I’m stuck with extreme agitation and restlessness. Yesterday I felt adrenaline being dumped into me fueling all this and had to resort to hitting my thighs and pacing and crying manically to try and “release” the turmoil. It didn’t work as there’s almost no reasoning with this. Might try a beta blocker to reduce the adrenaline. Idk. Such a mess.

[HiddenGems]

On 9/18/2021 at 7:35 PM, Marykay157 said:

How long ago did you reinstate your prozac?  I've been trying to get back on prozac 4.5 months and still having anxiety and depression and insomnia.   I'm going to have to taper off it. That and the klonopin my Dr gave me to help with the anxiety and insomnia 11 weeks ago.  

I was off Prozac for a bit over a month in 2019. When I reintroduced it akathisia was triggered which I at first thought was a new type of anxiety/breakdown. It was relieved by Benzo’s for a few months but the benzodiazepines soon stopped working and added a whole other layer. In the countless stories I’ve read this type of agitation/restlessness comes from SSRIs. Dr. Healys website outlines the experience precisely and accurately to what I feel. 

[HiddenGems]

On 8/25/2021 at 2:08 PM, Neon said:

I am not a moderator and I dont know a lot but I am also going through aka atm. I noticed that with Diazepam it becomes actually stronger and with Ativan it lowers the level of akathisia. Of course it rebounds as soon as it wears off so I dont know what I am gonna do about it but maybe changing to Ativan instead of Prozac and taper that could give you some relief?

I was originally on Ativan at the outbreak of this. The rebound Akathisia would be intolerable. It was as if the Ativan was actually making it worse. I remember it wearing off and really losing it. Probably because Ativan is potent. Idk. GABAs involved somehow. 

[HiddenGems]

Symptoms changing after all this time. On roughly about 3.75 of Valium. The akathisia isn’t as constant in its presentation but really bad when it’s here. I get 0 therapeutic benefit from this dose of Valium. Perhaps my brain is trying to find some form of stability and the Valium isn’t covering the receptor sites as much. I’ve been getting a lot of OCDish things between the akathisia. Very unusual thoughts and urges. No ocd history. I also am getting periods of what feels like mania. Too much “bad energy and adrenaline.” Could be simply benzo withdrawl symptoms there. But I welcome this change as it was just 24/7 akathisia need to tear my flesh off mental agitation for months on end. I still believe GABA plays a big role in that horrible sensation. We will see. Thankful I’m still trucking. 

[HiddenGems]

Oh God I’m a mess. I’m down to 3.6mgs of Valium which I do not feel at all. Dealing with rage, agitation, restlessness poor impulse control, hitting my thighs just nasty horrible things. I don’t know what’s what. Benzo or SSRI. Just can’t feel stable at all until I dose Mirtazapine in PM and it calms me down. Nightmare.

[Altostrata]

Still need the drug history in your signature and those daily notes. I do not have the faintest idea what you're taking, at what dosage, and on what schedule. If I had that information, I might be able to figure something out. That's the reason we ask for this.

 

I know it may be difficult but we need the information to make informed guesses.

[HiddenGems]

12 hours ago, Altostrata said:

Still need the drug history in your signature and those daily notes. I do not have the faintest idea what you're taking, at what dosage, and on what schedule. If I had that information, I might be able to figure something out. That's the reason we ask for this.

 

I know it may be difficult but we need the information to make informed guesses.

Updated signature. 
Same routine every day 

2pm - 1.8mgs of Valium 

7pm - 1.8mgs of Valium and 20 mgs of Propanol 

8pm - 20mg Prozac and 22.5 Mirtazapine.

[Altostrata]

Why are you taking 1.8mg Valium twice a day, only 5 hours apart?

 

Why are you taking 20mg Prozac with 22.5mg mirtazapine at the same time?

 

Are you taking any other drugs?

 

@ChessieCat, if you would kindly run a drug interaction check for HiddenGem's current drugs?

 

Please keep daily notes of times of day you take your drugs, their dosages, and your symptoms throughout the day. We need to know how you feel before and after taking each drug, and your symptoms in between. Post 24 hours of notes at a time in this topic, in a simple list format with time of day on the left and notation (symptom or drug and dosage) on the right. This can show if your symptoms are adverse effects from one of your drugs.

 

[HiddenGems]

11 hours ago, Altostrata said:

Why are you taking 1.8mg Valium twice a day, only 5 hours apart?

 

Why are you taking 20mg Prozac with 22.5mg mirtazapine at the same time?

 

Are you taking any other drugs?

 

@ChessieCat, if you would kindly run a drug interaction check for HiddenGem's current drugs?

 

Please keep daily notes of times of day you take your drugs, their dosages, and your symptoms throughout the day. We need to know how you feel before and after taking each drug, and your symptoms in between. Post 24 hours of notes at a time in this topic, in a simple list format with time of day on the left and notation (symptom or drug and dosage) on the right. This can show if your symptoms are adverse effects from one of your drugs.

 

Ty will do. I’ve always taken Prozac and Mirtazapine at night even when I was well. Never thought about it as I always slept well. 

[sleepylex]

Hi Hidden Gems,

If you get some respite from taking the mirtazapine why don't you take 7.5mg in the morning and 15mg at night so you might get some respite during the day. Both doses will have some histaminergic effect which might be calming you down. 15mg is not going to have much less effect than 22.5 so you shouldn't lose the calming effect at night. 

Just a thought. 

[Altostrata]

Great idea, @sleepylex

[HiddenGems]

On 10/17/2021 at 5:12 PM, sleepylex said:

Hi Hidden Gems,

If you get some respite from taking the mirtazapine why don't you take 7.5mg in the morning and 15mg at night so you might get some respite during the day. Both doses will have some histaminergic effect which might be calming you down. 15mg is not going to have much less effect than 22.5 so you shouldn't lose the calming effect at night. 

Just a thought. 

Yes that’s been discussed with my psychiatrist. He’s all for it yet i never tried it. Propanolol is forsure dampening the akathisia a month in now. (For anyone reading the feeling of coming out of skin in particular) but I’m still left with tons of unprovoked rage, irritability and dark thoughts as stated a couple days ago I’ve developed things like hitting my thighs because I have animalistic rage at nothing. I’m 27 and have 0 history of rage. Depression yes (and what led me to SSRIs) but all this with akathisia and withdrawal syndromes is far beyond what I even thought could exist. I see my psych in 2 days and he still wants me off the Prozac as he’s thinking it’s toxic to me now but I can’t tell because the long half life. 

[HiddenGems]

Then my neurologist says Mirtazapine because of it’s action on Dopamine. Everyone has a different opinion and that’s the problem of Polypharmacy gone wrong.

[Altostrata]

This site exists because the issues seem to be beyond the understanding of most psychiatrists. However, if you prefer to follow your psychiatrist's recommendations, feel free to do so.

 

Need to see those daily notes before any further discussion.

[HiddenGems]

17 hours ago, Altostrata said:

This site exists because the issues seem to be beyond the understanding of most psychiatrists. However, if you prefer to follow your psychiatrist's recommendations, feel free to do so.

 

Need to see those daily notes before any further discussion.

I ment no disrespect. I’m just voicing my thoughts. Psychiatrists have little clue of the issue. Notes - I have severe Akathisia/Agitation all day. That’s it. If it waxed and waned I could chart it. It’s very very bad all day. 

[sleepylex]

It seems to be a no loss experiment to try taking a small portion of your total mirtazapine dose earlier in the day on one day to see whether that gives you some relief. 

[Altostrata]

Need to see those daily notes, including how you feel before and after taking each drug.

 

If you split the dose of mirtazapine, we need to see daily notes about the results of that experiment, too.

[HiddenGems]

Woke up at 7:30am inter tension/agitation present but not too high. Had a cup of coffee. Read a bit on my tablet. Sitting in bed. 
9:30am - same 

11:30 am - Shower and increased mental tension and agitation. Brain processing becomes almost locked up and catatonic. 
1:30pm - Walked outside. 10 minutes. Starting to feel like I’m exploding from my skin.

2pm - 1.7mgs of Valium 

3pm - No change In agitation 

4pm - Called uncle, very agitated and pressured hung up after 10 minutes. 
5pm - 20mgs of Propanolol. Dips the agitation and internal restlessness 15-20%

7pm - Mirtazapine/Prozac/1.8mgs of V. Sedation calms me down enough to the point i eat. Feel some clarity and sleep to repeat.
 

At this dose of Valium I’m not getting paradoxical at the moment. But the akathisia, agitation and tension is agonizing. Just keeps getting stronger. I’ve been spending days in my room in agony/anguish - Dad wants to hospitalize me. But here in the USA the hospital system won’t do any good. My psych wants me to drop to 10mgs of Prozac. Just no options. I’m don’t understand this. 

[HiddenGems]

What I’m struggling with on top is i don’t understand how the benzodiazepine has no effect on the akathisia or at this stage any effect on anything at all - yet removing it makes the akathisia worse.

[HLH44]

iM also struggling with severe akathisia...never get a break. I went to ER yesterday. They gave me Propranolol. Stopped the aka but gave me such severe depression it scared the Hell out of me. 

I spoke to a dr yesterday who suggested an inpatient at this place for what its worth:

 

https://www.alternativetomeds.com/?gclid=Cj0KCQjwlOmLBhCHARIsAGiJg7kRuR82cpoDxa6NgkAJX3bOhU7fjevyP_Ma9w1gQ7eVz1NY65XFXvoaAgYdEALw_wcB

[HiddenGems]

6 hours ago, HLH44 said:

iM also struggling with severe akathisia...never get a break. I went to ER yesterday. They gave me Propranolol. Stopped the aka but gave me such severe depression it scared the Hell out of me. 

I spoke to a dr yesterday who suggested an inpatient at this place for what its worth:

 

https://www.alternativetomeds.com/?gclid=Cj0KCQjwlOmLBhCHARIsAGiJg7kRuR82cpoDxa6NgkAJX3bOhU7fjevyP_Ma9w1gQ7eVz1NY65XFXvoaAgYdEALw_wcB

Yes. It in it’s severe forms is one of the worst mental, psychical and spiritual things I never even imagined existed, existing. It’s 12:31 AM here. The agitation feels like every cell of my body is exploding with tension and pain making sleep not happening right now. However I thank God the agitation isn’t currently heavily in my brain atm. Where I can’t speak or think and just desperately need to explode from my skin from the torment. I refer to it as becoming so agitated I become catatonic. I Don’t have the funds or the means to try ATM and I doubt very much they know anything about chronic disabling akathisia situations, and a few people who’ve been there reported it was a waste. I’m very sorry you or anyone has to experience this fate. I just really hope God and The Universe helps me sustain as getting through or anyone who needs strength. 24 hours can be the most monumental feat, and I’m so incredibly worn down with how relentless it’s been for myself…

[HiddenGems]

A dear friend we will call a real life angel is coming up here from cross country In 3 weeks. We’re trying to get a plan together. We know Doctors and hospitals are useless. In my crisis level of screaming Akathisia what they would do to me could make it worse. It’s very very hard to sustain this level of it. It’s returned to 24/7 at a increase in severity. I'm convinced now more than ever it was and has been Prozac reinstatement all this time and was merely being masked with Benzodiazepines. Really trying to come up with a game plan as it’s pretty close to life or death. My friend is coming at the right time, I hope to God we come up with something. As now it’s just barbaric survival. But I’m alive. If anyone knows or experienced Akathisia like this please reach out. 🙏