dadtobe: Klonopin, escitalopram, alcohol, Novocaine - need advice

[dadtobe]

Still windows and waves. The akathisia really flares up bad with stress. @Rosetta did/do you feel the same? I'm only sleeping 4-5 hours a night on average right now. I notice my symptoms are mostly related to the burning skin sensation and buzzing feeling, which makes me so uncomfortable that I begin to pace. This unfortunately lasts for days once it's turned on. I did get a 6 day window where I was probably 75-80% but back at it as of a couple days ago. Rough month with unavoidable stress.

[Rosetta]

Hi.  Yes, stress is a big problem in PWS.  I’m not sure it’s necessary to be stressed in order to go into a wave or have aka, but aka causes stress.  Any type of stress is much more difficult to deal with in pws, of course.  
 

I hope the stress is over soon.

[Mia1]

I wanted to share this guided meditation that has helped me tremendously with restless leg, I hope you are starting to feel better.

 

 

[dadtobe]

4 months and 1 week off, and the Akathisia is getting worse. Burning skin is 10/10 all day and sleep is going because of the pain. I really wish I could meditate the pain away. Walking 20,000 steps a day in my house. Yet pretty clear headed. 

[Mia1]

I’m sorry you are in so much pain. I have had varying degrees of Akathisia for 16 months now, currently in a wave after three months of stopping Amitriptyline. Throughout this journey I have found acceptance to be the cornerstone to healing; not reacting to symptoms and allowing time and patience to heal. Accepting that this is a temporary experience and that every day I’m closer to recovery.

 I have done so much work to get where I am today and when I see someone else suffering from something that I have managed to overcome I want to share my experience in the hope that perhaps it will also help them.

The meditation I shared with you has helped me tremendously with akathisia. It explains how when you are focused on pain you are essentially practicing being in pain and reinforcing that your brain needs to think about it all the time. As hard as it may seem we don’t need to be focused on our symptoms all the time no matter the severity and with practice this is a skill that can become easier with time.

So the point is not to meditate pain away but rather to view your pain with acceptance and non judgement and let it go, even if only for a moment. 

With that said, we are all on our own unique journeys of healing and you will find your way back to good health. I’m rooting for you. 

 

 

[dadtobe]

Seems I only come back here when things are bad. Just trying to keep a record incase somebody else goes through the same thing.

 

Made it about 14 days or so, not symptom free but around 80%. I was feeling super positive, planning my life again, etc. Probably my biggest window in 5-6 months. 3 days ago, my tremors in my body came back. This time it's pretty visible in my hands but it's throughout my arms and legs. Talked to doctor, who made me hold a piece of paper to really see the tremors. Neat trick. My arms feel weak and feel almost uncontrollable at times because of the shaking.  My arm and leg muscles are also twitching constantly and of course the burning is back (although not extreme yet) and my sleep has gone. Almost 5 months off now. Incredible to still be dealing with this, to this extent. Hopefully, I come out of this wave quickly. 

[Rosetta]

I hope it’s quick, too.  A 14 day window is amazing! Wow.  80 percent!? That’s truly amazing. Hang in there. You are healing. -Rosetta

[dadtobe]

My waves have been next level and my windows have been almost symptom free. I don’t get it. My symptoms have evolved from an electrical / buzzing to feeling like my body parts are jiggling constantly, my neck, arms, legs, stomach. Not sure if this is inner restlessness or tremors. Seems to go with my heart beat sort of. Unfortunately this new thing makes pace a lot more and my burning skin feel horrible. It seems the more I need to pace the more my skin burns. I’m in long 5+ day wave now which isn’t usual for me. Usually it’s a few days a window and then a few days. Feels almost like the long window I got caused me to have a longer wave. Last night, I slept 1 hour and woke to my arm feeling like it’s jiggling like crazy but it’s not visible. That’s all I could sleep after that. My pacing has also been the most it’s been since starting this journey. 24k steps a day for multiple days in a row. Sometimes I feel like the Akathisia is actually getting worse. I read a lot of people have no windows but my Akathisia has come and gone since the beginning of withdrawal. I guess I’m luckier than most although now it’s starting to feel like this is going to turn into a 24/7 endeavor. Maybe I’m just getting started.

[Rosetta]

This sounds like typical withdrawal induced aka.  I’m glad you get breaks.  I’m sorry you have to go through this. Remember that it will eventually resolve.  -Rosetta

[dadtobe]

Hey Rosetta, my breaks have stopped. It's been 9 days of just pacing. To sleep I pace and fall on the bed, hope i sleep, if not I have to get up and pace again. This is wild. No clue what happened to me. I was doing bad but it was tolerable. This is next level. 

 

Pray for me 

[dadtobe]

Hi all,

 

I got akathisia from taking either an SSRI or Benzo short-term (or both). I've been completely off meds for 5 months and going in and out of Akathisia waves for that time where I feel ok, then feel horrible. It wasn't enjoyable and there were some very bad days but I was doing well otherwise. A few weeks ago I took codeine to try and relieve this burning sensation I've had since the beginning. It was recommended to me by a highly regarded doctor. I know it affects dopamine. I don't really know what the hell I was thinking. I was told basically the effect of it should be short-term if it had a negative effect. I got no relief from it and came out of the wave when I took it, so I figured it just didn't do anything. After that I had my biggest window since January for 2 and a half weeks about 15 days. I actually thought I was beating this thing. Then I noticed I slight tremor in my left hand but I felt fine otherwise. I figured it was a new symptom of akathisia, a sign of healing. Another day later and I started having these strange inner vibrations inside my body. Arms, legs, back, felt like they were all shaking 24/7.  Then my pacing turned into 24/7, where even when trying to sleep I wanted to pace.  I finally broke down and took .5mg of Klonopin because I was feeling suicidal and I was recommended to try this once by another prominent akathisia doctor. Basically I made a lot of mistakes after doing nothing for almost 5 months off meds. The benzo gave me mild relief where I paced half as much and I slept but that was about it. I'm about 36 hours off of that. I've been pacing all day again and I'm noticing the burning sensation returning (maybe even more intensely).  I really screwed up here and feel hopeless. I have a beautiful wife who's been taking care of me through this for the past 12+ months. I really don't want to die. I know I can fight, and have been fighting. I have so much to live for. I'm just so lost as to how to mentally get myself through this. I keep wanting to contact therapists or even pay someone to live with me to help me cope. I've burned out all of my options being stupid even taking any medications to begin with, and then not realizing I had Akathisia until it was all too late to re-instate. And then trying new medications. All against your advice. So please pray for me. 

 

If anyone has any resources to connect me to someone who can provide me support on the phone, I'm all ears. My body feels like it's so amplified right now, I don't know if I'll ever sleep or stop walking again. Distractions are helpful but I can only distract while I'm moving. Thanks all for listening.

 

 

 

 

[Altostrata]

Please do not start additional topics in the Introductions forum.

 

4 hours ago, dadtobe said:

A few weeks ago I took codeine to try and relieve this burning sensation I've had since the beginning. It was recommended to me by a highly regarded doctor.

 

I am sorry your experiment with codeine renewed your symptoms.

 

4 hours ago, dadtobe said:

The benzo gave me mild relief where I paced half as much and I slept but that was about it.

 

Benzos are a common treatment for akathisia. If you found this effective, why are you not conferring with the prominent akathisia doctor?

[Mia1]

4 hours ago, dadtobe said:

I have a beautiful wife who's been taking care of me through this for the past 12+ months. I really don't want to die. I know I can fight, and have been fighting. I have so much to live for.

I’m so sorry you’re going through this, my heart goes out to you. You are NOT going to die, even if you feel like you will. All of these symptoms can feel brutal and leave you feeling hopeless but you’re in a wave, things will improve for you. I’m so happy you’re wife is supportive of you and you recognize that you have a lot to live for because you really do. 

 

4 hours ago, dadtobe said:

I've burned out all of my options being stupid

Please don’t be hard on yourself, you made the best choices for yourself at the time. It’s only going to make you feel worse if you beat yourself up for it. We all make mistakes, it’s how we learn. The past is done, let it go.

 

4 hours ago, dadtobe said:

f anyone has any resources to connect me to someone who can provide me support on the phone, I'm all ears.

When I had really bad sleep anxiety OCD I worked with a prominent hypnotist who really helped me. He’s in NYC but does zoom. I also worked with a mindful therapist this past fall and he also really helped me with the symptoms of w/d. If you’re interested let me know.

 

4 hours ago, dadtobe said:

So please pray for me.

I have been praying for you to get well, I pray for us all going through this. And I do believe you will get well so like I said don’t give up hope, you will get there. I know I’ve said this to you a lot but acceptance can really bring you tremendous peace. Why don’t you give the meditation I sent you a try, it will help you with your pain. At the very least it can distract you for 20 minutes. It can’t hurt, right?

[dadtobe]

4 hours ago, Altostrata said:

Please do not start additional topics in the Introductions forum.

 

 

I am sorry your experiment with codeine renewed your symptoms.

 

 

Benzos are a common treatment for akathisia. If you found this effective, why are you not conferring with the prominent akathisia doctor?

 

This Doctor won't respond to me because I don't live in their area. They did a couple consults for me, but they've basically cut me off. I guess as things get worse they don't want to be viewed as a treating doctor. So I'm stuck. I tried .5mg Klonopin again but didn't get as much relief this time. I think I have to go higher to deal with this. Just it's so intense. Only other thing I can think of is to re-instate Lexapro, but I'm 5 months off. No clue if that will work anymore.  I hate to sound dire here @Altostrata I just don't know where to go from here. My body has to keep moving 24/7. When I'm sleeping, I get woken up by my body basically vibrating me awake. I have to lay in bed for 30 minutes before it calms and I can try to sleep again. 

[dadtobe]

The klonopin isn't really working. Tried to go up to 1mg but it's not having much of an effect. In fact, I feel a slight burning on my body, which seems abnormal if it was working correctly like it used to. I'm so lost. My only other option I think is to try and re-instate Lexapro, but being 5 months off it doesn't seem likely that this will work either. What are your thoughts @Altostrata? Doesn't seem like I have many choices at this point. 

[Altostrata]

12 hours ago, dadtobe said:

I tried .5mg Klonopin again but didn't get as much relief this time. I think I have to go higher to deal with this.

 

Suggest you try a much LOWER dose of Klonopin, take doses 12 hours apart. Your system is highly sensitized, too high a dose of a sedating drug, such as codeine, can kindle worse symptoms.

[dadtobe]

@AltostrataWill do. Thanks for the help.

[dadtobe]

Sorry @Altostrata. I don't think I can survive without Klonopin. Without it the Akathisia ramped up to 24/7 pacing, nausea, etc. Basically just try to force sleep every time I walk by my bed. I'm just scared I don't know whether my short-term Klonopin use or short-term SSRI used triggered my Akathisia, or both. I want to take Klonopin, I think I need it but at the same time I don't want to be taking the very thing that possibly caused my Akathisia. Maybe you can play intermediary here based on your experience and tell me your thoughts? I fought hard for 5 months, but somehow I made my Akathisia from pretty bad to severe. I have 2 extra family members living with me now, just following me around the house to make sure I don't do anything. It's gotten crazy.

 

My story is a bit all over the place, but basically I took Klonopin for 3 months starting in May last year at intermittent doses that averaged out to .25mg a day or so over 3 months. During my last month of Klonopin use I started Lexapro while also trying to discontinue Klonopin. I had a severe reaction, my skin burned like crazy, I was heavily nauseous, having panic attacks for a month. To get relief I had to go on Klonopin full-time at .25mg. After getting fully on the Lexapro over a month, I tapered Klonopin over like 14 days, and didn't even notice withdrawal after this taper. After being on Lexapro for 2 months, I was sick of these meds, and I basically halved my dose from 10mg to 5. I started noticing this weird burning sensation that slowly progressed to severe burning over a week, nausea, pacing, etc. (I was off Benzos a month by this point which is why I don't think it was benzo withdrawal unless it was delayed onset).  I went 5 nights without any sleep twice, dealing with severe Akathisia (I didn't know it was Akathisia then though). I re-instated a tiny bit of Klonopin (.06mg). I ended up going to a wellness center in San Diego who kept telling me it was my anxiety. I eventually tapered back off the Klonopin with no effects by Dec 1.  Needless to say I somehow stabilized and ended up back where I live after a month on roughly 2.5mg of Lexapro. Over Nov, Dec, January I was mostly stable, however if I had a high stress event I'd get the burning skin, pacing, not sleeping issue. But it'd resolve after a day or two. In February I dropped my Lexapro dose again to like .75mg and that's when this hell started. I spoke with an Akathisia doctor (who I think you guys respect) who told me to drop the last bit of Lexapro and take .5mg-1mg of benzo twice a week. I didn't follow this advice and chose to stay med free. I've been going in windows and waves of Akathisia on no meds for about 4 and a half months. About 4 weeks ago, I talked to another doctor whom I think you all respect, who recommended taking Codeine for the paresthesia I was still having. He said to try it once, and if I felt relief awesome, and if I had a negative effect it should be short-lived. So I did. I noticed no positive or negative from it and went into a 2 and a half week window afterwords (my biggest yet). However, that was the last time I've felt ok. Since about 15 days ago, all the sudden my Akathisia went into full-blown 24/7 I'm plugged into a light socket mode. My knees are completely swollen from all the walking. After 6 months of torture, I was not prepared for the extra torture coming my way. Like I said, the only change was I took some codeine right before my last really long window. And you can see how my day rating in my graph was going relatively ok up until February when things started going over all the place because I was going lower on Lexapro. My last 2 week long break I really thought I was moving the right direction until I got a mild hand tremor I'd never had before, which escalated into my entire body having inner vibrations which escalated into this feeling like I'm plugged into a light socket 24/7. 

 

Anyway if you can at all help me make heads or tails of my situation so I know I'm not completely blowing it if I take Klonopin, it would be amazing. I think like everyone else though, nobody really has an answer. But a best guess would be helpful for me. Like I said, I don't think I have a choice, anyway. 

 

I don't know what Klonopin should feel like if I was in Klonopin withdrawal and took it, whether it'd do nothing or provide relief. Everyone with Akathisia I read seems like it's related to Benzo and not SSRI, all the symptoms and everything match up to how I feel,  but I just don't think it's possible I'm in benzo withdrawal if after I got off benzos I was fine for 3ish months and I only went to not well after tapering too rapidly my SSRI.

 

I've also read re-instatement of Lexapro is a possibility. But I think I'd rather fight this with Klonopin than re-instate if it's the SSRI 😕 

 

 

[Altostrata]

Did you read this?

On 8/17/2021 at 11:19 AM, Altostrata said:

 

Suggest you try a much LOWER dose of Klonopin, take doses 12 hours apart. Your system is highly sensitized, too high a dose of a sedating drug, such as codeine, can kindle worse symptoms.

 

As a mere online peer support group, there's only so much we can do to keep you from making your own problems. Carry on.

[dadtobe]

@Altostratayes I did. carrying-on.

[Rosetta]

You will see improvement and another window.  Don’t forget that.  I hope you can get the right dose soon.  
 

Try ice on your knees.  
 

I’m sorry that you can’t stop pacing.  I didn’t pace much.  I was sort of stuck in place instead with the electric feeling throughout my body.  The terror.  I still had some joint swelling.  

 

Any luck with getting a book on tape or a soothing music to listen to while you pace?  Hope so.

 

It is possible it’s benzo WD, but that doesn’t matter so much now.  If the benzo helps, that’s what matters.  
 

Hang in there, R

[dadtobe]

@Rosetta Thanks for the encouragement. This has gotten extremely hard for me. I'm in so much pain 24/7. My hips now hurt from the walking on top of the rest of my body. Paresthesia / burning skin is still there. I've decided to try and forgo anymore benzos. I can hardly sleep. I don't know how this got so bad on me so quickly. I feel like every other akathisia story is a walk in the park now when I used to think I had it pretty good. Everything changed on me 5 months in. 

[dadtobe]

Still pacing 24/7 21 days later. Burning skin, body and knees in so much pain. I’m starting to believe I was really in benzo withdrawal and Lexapro actually masked the withdrawal or at least made it so I stayed in windows longer than waves until I tapered off of it which is what made me believe I had severe Lexapro withdrawal. So many mistakes I’ve made not knowing what was wrong with me (and not listening to SA). I was off benzos for 8 and a half months until I stupidly just took 5 doses of klonopin over 3 days because I was so suicidal thinking it might fix the Akathisia if it was by Lexapro. No clue how badly I’ve set myself back. Still here, but it feels so over for me. I keep looking at the Christine Ativan story and it sounds so similar to my experience with benzos only I was shorter time and lower dose  I just took random amounts between .25 and 2mg over 3 months and I think I severely kindled my brain doing this. 

[dadtobe]

100% benzo withdrawal masked by Lexapro. Skin burning going back to the extreme I felt in October last year when this hell started because I took klonopin. Hopefully someone can learn from my mistakes. 

[Rosetta]

Could go somewhere with a rowing machine?  Maybe you could give your legs and hips a rest and work your upper body instead.  I don’t know if that would work out for you, but you could try it.  I suppose now isn’t the time to be in a gym unless you are vaccinated.  
 

Would you put the amounts of the benzo that you used in your signature, please? If you don’t know the dates you can put a date range for the 5 doses over 3 days. 
 

I know this is Hell for you, and I’m so sorry about that.  I promise it will eventually lessen until it’s gone.  You will get your life back.

 

Rosetta

[dadtobe]

I bought a Peloton. Unfortunately it doesn't work. The movement I have, I have to actually be moving forward else it doesn't provide relief. Will update my signature later. Still pacing 24/7. Just woke up after 5 hours and already know I'm back to it for the next 18. This is crazy. 

[Rosetta]

How’s it going today?

[dadtobe]

I’m in benzo withdrawal. Kindled myself. Been pacing 24 days now and I put myself in acute withdrawal taking benzo again. I should have never bet this was caused by the ssri. My wife and in laws are following me around the house. Removed everything I can harm myself with. Now we are literally getting on a private flight today to Miami from Puerto Rico because I can’t sit still for a commercial plane. Trying to be near better medical. Things are looking grim though. This doesn’t feel sustainable. I’m not sure how I can keep walking at this pace long term. I already had full blown Akathisia when I just kindled myself too which means I definitely set back the healing process. I’m in a ton of physical pain now from the withdrawal.  Just hope I didn’t completely restart this process. 
 

I can’t focus enough to update my profile but it was .5mg waited 48 hours. I slept. Took another .5mg didn’t sleep. Took another .5mg that morning. Slept that night. Waited 96 hours and took .25mg twice in one day. 2mg total. Back in complete withdrawal 10 days later and it never even touched the pacing.

[Mia1]

I’m sorry it has gotten to the point where you feel you may harm yourself, I’m happy to hear you are getting professional help.

[Rosetta]

Ok.  Thanks for writing out the benzo doses.  That will help you later because you won’t remember.

 

As you may know, you will have to be very careful with any doctors you see.  You know that benzos have a paradoxical effect.  You will have to be very firm and yet polite and calm when you refuse medications.  Hopefully you will see someone who knows about akathisia.  See this group that tries to educate doctors so that they don’t cause more harm.  https://akathisiaalliance.org

[Mia1]

How are you doing?

[dadtobe]

I stopped having to pace 24/7 after about 30 or so days. Guessing I set myself back somehow at 8 1/2 months off Klonopin, maybe took on too much work or something. Re-taking Klonopin put me into withdrawal. I'm getting small windows again as of the past week which has given me a lot of hope, but the windows aren't nearly as good as they were prior to taking Klonopin again and the waves are much more intense / painful. I'm sure I added a few months onto this hell. It doesn't seem (at least so far), like I completely reset healing since my first time in withdrawal at the beginning of this journey 10 months ago the burning was much worse than this time around. Anyway, I'm off SA for awhile. It's not good for me, but I didn't want to leave you hanging. 

[Rosetta]

Thanks for letting us know.  I’m so glad your need to pace ceased.  Hopefully, it did not come back.  Take care, R

[dadtobe]

Well.. after a horrible month and a half... it's been about 3 months now after I finally came out of it, I started to recover very quickly after that from about a year of benzo withdrawal hell.  I'm not ready to write my "healed" post yet because I'm still afraid things will return, but my burning skin has been gone for about 3 months and it doesn't seem like I can get it to return even when I'm stressed. Healing is definitely not linear. It can definitely get worse 9 months in, and then all the sudden get a lot better (at least that's how it is with me). When you finally do get better it can go from essentially it's worst to gone in the span of just a few weeks or heck I'd even say days. I'm physically almost back to normal and mentally I'm getting back to my old fun loving self.  I still have sensitivity to stress that wasn't there pre-benzo but since I don't get the burning anymore, it's much more tolerable although still not enjoyable.  This was after taking a benzo again multiple times over a few days trying to alleviate my symptoms just 3-4 months ago after being 8 or so months off.

 

To those of you that take benzos again in desperation, it definitely did not set me back to square one after taking it again a few times while still in withdrawal after 8-10 months off (I'm too lazy to look at my timeline right now to see the exact time).  It also didn't help either and it sent me into a mini-withdrawal without providing any relief.  So if you're thinking about it, it's not worth it,  but if you've already made the mistake, I wouldn't view it as the end of the world either. It really messed me up mentally reading the forums where people said I was now back at square one. It resetting you to square one is simply not true.

 

My two cents on what can help you get better or at least make withdrawal more tolerable...

 

When I was in the thick of it, I was finally able to find a therapist who also dealt with benzo withdrawal. The first thing he told me was to get the hell off these forums and stop researching on the internet. This turned out to be the best advice for me. Withdrawal treats everyone differently. For example, I'm still not 100% sure my pacing was Akathisia or if my pacing was from the burning. I seem to pace now when I have anxiety. The only thing I know for sure is that I was in withdrawal since my symptoms have improved dramatically. For some it's more clear than others what medication is causing their withdrawal, but withdrawal treats everyone differently even on the same medication.  So reading forums and the internet and constantly trying to self-diagnose, along with compare your timeline to others like I was doing is only going to leave you disappointed, frustrated, and panicked when your timeline or symptoms deviate from the person who sounded exactly the same as you and was "healed" in a month, or 3 months, or 6 months. @Mia1 once messaged me that I needed acceptance. I was actually pretty annoyed by that comment at the time because I was in so much physical pain. I looked at acceptance as accepting that I was going to be in this permanent new level of burning pain pacing hell which to me there was no way to accept this. But looking back, I realize I was looking at acceptance the wrong way. Acceptance is realizing you're in withdrawal, and there is nothing you can do about it so stop researching it or trying to find a doctor who can cure it. So the therapist suggesting to remove myself from this forum and researching on the internet helped tremendously. And thanks Mia for the support.  sorry I'm an idiot haha. I'm thinking a little more clearly these days.

 

I also got off social media. Just deactivated everything. It helped not seeing stressful posts of others all the time, or news, politics, etc. It was all mildly triggering. I didn't really think it could be making things worse at the time, but after I removed myself from it it helped my brain settle even further. In fact, I probably won't ever re-activate it now.

 

Another thing I would suggest is to remove all stress possible if you can. I think this advice has been given hundreds of times but it's so true. I know everyone here is in a different situation in life, but if you can somehow pull it off, the one thing I would have done differently if I could is just stopped everything in my life that could possibly cause me stress when withdrawal started. I tried desperately not to lose anything while I was in withdrawal, and as a result I continued to suffer more than I should have because withdrawal lasted a lot longer than I thought it would. Just give up everything you can that's stressful. It's only temporary and when you come out the other side feeling better, you may even find the things you gave up that are stressful are no longer important to you anymore anyway.  I feel this way right now with some of the things I fought hard to keep during withdrawal that probably just prolonged my agony, like my business. 

 

Being open with others I think helped me a lot too. I told my friends and family when I was really bad that I was suicidal from the pain I was in. It's by far the most embarrassing thing I've ever done but I felt like people knowing my circumstance would help them keep me alive. Which it did. I'm sure most of them think I'm crazy now, but through being open with everyone, I found out I'm not alone. I learned so many people I work with are on meds for anxiety and depression. I even have a friend that is a CEO of multi-million dollar startup, someone who I thought was the most confident person I knew,  takes anti-depressants for anxiety. I met a dental assistant, after putting on my form I was allergic to benzos, had also been through benzo withdrawal and had seizures. It's crazy how not alone we are, and how many people are silently suffering.

 

Anyway, hopefully I come back with a proper healed post, but like I said above, being here isn't healthy for me. @RosettaI really appreciated your support in this as well as Mia's. You both gave me so much of your time I wish I could find a way to repay you. 

 

[Mia1]

Thanks for the update, I’m so happy you are in a good place and well on your way to be healed. I look forward to reading your success story, take care of yourself 💖

[Cheeky]

Thats d such an amazing update and I really nodded to read that today . Good luck with your future 🦋