MaryMoo429: Introduction

[almuPA]

Hello @MaryMoo429,

 

I am really sorry to read that you are having a tough time. 

 

It is a good thing that you had you mum with you during your panic attack on Saturday. It is important to have someone by your side.

 

31 minutes ago, MaryMoo429 said:

On Saturday night I was lying in bed and around 11pm I felt a PVC in my heart. These happen to me frequently and normally they correct themselves after a few seconds but this episode lasted for over a minute.

 

After I had my first dose of Pfizzer, I started to have ectopic heartbeats. I never had them before, and they have become less frequent with time, so in my case, I think it was the vaccine+stressful time(to clarify, I am not antivax, that was just my experience). Also, feeling the heart pounding is a symptom for me and for a lot of people. 

 

You did the right thing going to the hospital. I am happy to read that they made all kind of tests on you. Dont you feel a bit better after that? And I am asking knowing that sometimes no matter how much proof we have that we are ok, the struggle is real. I deal with health anxiety on a daily basis (not saying that that is your case). 

 

35 minutes ago, MaryMoo429 said:

I made it to work today but now just feel traumatized by the last 4 days. I can't continue to live like this.

I am so sorry to read this. It breaks my heart and I know and understand your pain. I really wish that I had a magic wand and could make a spell on everybody that is suffering so much, we dont deserve this. I know that you are a fighter and you are being incredibly brave. 

 

40 minutes ago, MaryMoo429 said:

I am definitely getting worse. As much as I hate the idea of it, I am starting to consider reinstating a low dose SSRI.

 

Thats a posibility, but please, please, please before that, try to read about it:

 

There are a lot of individual stories in this web about reinstatment, too. Maybe talk to a mod about this idea? 

 

I send you a big big hug and, if there is something I can do for you, please let me know.

 

 

[Mia1]

@MaryMoo429I’m so sorry you’re having such a difficult time. I can actually relate to a lot of what you’re going through, the reason I went on medication all those years ago was for a panic disorder. I won’t go into the whole thing but I now realize what I really had was health OCD, the panic was secondary to that. I too thought I had Lymes disease and was tested a couple of times for that. I remember being so scared and confused and had no idea what to do, hence the medication.

 

When I started this journey to be med free almost two years ago I was so determined to get off medication but I was so unprepared to handle the level of anxiety and OCD I was experiencing, a combination of me and protracted withdrawal. Last October I hit an all time low and felt medication was the only way out for me so I started taking Lexapro. About a month in and feeling sick from it I had an epiphany and realized that no matter what it took I was going to be med free. It took me eight straight months of brutal suffering to realize this, that I could heal myself. That all the answers I sought were within. 
 

This really was not easy for me. I used to suffer from anxiety, panic, health anxiety, OCD and insomnia. I slowly learned to trust myself, to sit with and understand the feelings and sensations that would come with intense emotions. I learned acceptance and letting go. I found that place inside that is still even when the chaos of the world is loud. I have learned to connect with that stillness every day.

 

So I’m sharing all this to show you that it can be done. I have been told most of my life that I have a chemical imbalance and that I will always need medication. Yet here I am tapering my last drug and not one panic attack since I made that decision. And I’m tapering Klonopin, which I’ve been on 22 years. It’s not easy but it can be done. I am free from “mental illness.”

 

With that said if you feel like you need to go on medication to help you there is absolutely no judgement. I have found we all have our own ways to heal, it’s definitely not a one size fits all. Whatever you decide to do I’m here for you and I’m hoping that you feel better soon. 💖
 

 

 

 

[deg1979]

@MaryMoo429, I am so sorry you are going through this. I just got out of a wave I was in. Not as bad as what you are going through, but I do want to say I have experienced everything you described. Just so you know you aren't alone. We're all here fighting this same battle. 

 

I don't know anything about reinstatement, and since I'm an AR case, I haven't paid much attention to that option because it isn't available to me. I do think you should carefully consider, wait just a little bit to see if this is a wave that will soon resolve, and get some moderator opinions. 

 

That being said. . .absolutely do NOT feel bad about it if you choose to reinstate. It's not going back. It's still moving forward. If that's what your body needs in order to heal, then it is part of your journey to health. And if your goal is to not be on anything, reinstatement can be part of that path, too. Maybe your brain just needs some stepping stones on its way to being med free. 

 

I wish I could give you a hug. Don't worry, you are not broken. You are suffering, but you are also so brave. You have been through so much, and you are still standing. Remember we are all here to support you. In real life, we can often feel really alone and separate from the rest of the world. But you are not alone. And we understand. 

[MaryMoo429]

I ended up in the ER again on Friday with extreme anxiety, dp/dr, upper body pressure, chest pain, head pressure, tinitus, and feelings of literally losing my mind and becoming psychotic. Two times at the ER in a week.
 

I had an ekg, full blood panel tests, thyroid test, troponin test, urinalysis, chest x ray and cat scan of the head. Everything came back normal and the doctors recommendation was to go back on Lexapro. 
 

I feel like I have been living in a nightmare since I had my booster on the 19th and I had that PVC heart episode on the 20th. I’ve never felt like I was losing my mind so bad as I have this last week. 
 

I can’t even drive my car anymore since I had to drive myself to the ER on Monday. Everything has snowballed further out of control. 
 

I called into work today and reached out to HR about taking shirt term disability. I have a doctors appointment with my PCP at 4:15 today that my parents are bringing me to. I’m going to have her fill out the paperwork. 
 

The one thing I don’t know is whether to try to reinstate Lexapro again. Everything on here tells me it’s a horrible idea but every doctor and every other person I meet tells me to do it. So much conflicting information makes my anxiety worse and makes me feel further helpless. I can’t imagine feeling worse I’m scared of what I will do or be like. 

last night my mom drove me back to ME from NH where I spent 4 days with them for the holiday. When I got back here last night and was alone and dreading going back to work the following day my anxiety was so bad I was ******* crawling out of my skin.

 

I was trying to watch Tv and just relax and the anxiety/paranoia got so bad that I had the worst intrusive negative thoughts that were poisoning my mind and really disturbing. I kept thinking my mind was becoming so crazy that I had this thought come into my mind that what if I get so bad that I hurt someone else or myself. I don’t know where it came from and I kept thinking about it and I freaked out and called my mom. 
 

I started doing yoga at like 11pm and took a shower to try to get out of my head and into my physical body. It helped for a little but then when I went to lie down later I had the worst restless leg syndrome (which I never have). I also had the horrible sensations of the anxious energy rushes over my chest when I’m trying to fall asleep that startle me right when I’m about to drift off. 
 

Im

such

a 

mess. 
 

my parents’ just got here so have to go but will post again later. 
 

so disturbing that I’m doing worse at 14 months off than ever before. 

[JesusSavemefromWD]

3 hours ago, MaryMoo429 said:

I ended up in the ER again on Friday with extreme anxiety, dp/dr, upper body pressure, chest pain, head pressure, tinitus, and feelings of literally losing my mind and becoming psychotic. Two times at the ER in a week.
 

I had an ekg, full blood panel tests, thyroid test, troponin test, urinalysis, chest x ray and cat scan of the head. Everything came back normal and the doctors recommendation was to go back on Lexapro. 
 

I feel like I have been living in a nightmare since I had my booster on the 19th and I had that PVC heart episode on the 20th. I’ve never felt like I was losing my mind so bad as I have this last week. 
 

I can’t even drive my car anymore since I had to drive myself to the ER on Monday. Everything has snowballed further out of control. 
 

I called into work today and reached out to HR about taking shirt term disability. I have a doctors appointment with my PCP at 4:15 today that my parents are bringing me to. I’m going to have her fill out the paperwork. 
 

The one thing I don’t know is whether to try to reinstate Lexapro again. Everything on here tells me it’s a horrible idea but every doctor and every other person I meet tells me to do it. So much conflicting information makes my anxiety worse and makes me feel further helpless. I can’t imagine feeling worse I’m scared of what I will do or be like. 

last night my mom drove me back to ME from NH where I spent 4 days with them for the holiday. When I got back here last night and was alone and dreading going back to work the following day my anxiety was so bad I was ******* crawling out of my skin.

 

I was trying to watch Tv and just relax and the anxiety/paranoia got so bad that I had the worst intrusive negative thoughts that were poisoning my mind and really disturbing. I kept thinking my mind was becoming so crazy that I had this thought come into my mind that what if I get so bad that I hurt someone else or myself. I don’t know where it came from and I kept thinking about it and I freaked out and called my mom. 
 

I started doing yoga at like 11pm and took a shower to try to get out of my head and into my physical body. It helped for a little but then when I went to lie down later I had the worst restless leg syndrome (which I never have). I also had the horrible sensations of the anxious energy rushes over my chest when I’m trying to fall asleep that startle me right when I’m about to drift off. 
 

Im

such

a 

mess. 
 

my parents’ just got here so have to go but will post again later. 
 

so disturbing that I’m doing worse at 14 months off than ever before. 

I just went over ur thread and I am sorry for what ur going through…. From what I read here 14 months is unfortunately still early in withdrawal…. I am almost 14 months out of an adverse reaction and have only seen minor improvement. All we can do is take it day by day till healing comes. You are in my prayers for recovery and healing …

[Mia1]

I’m so sorry @MaryMoo429how did it go today?

[MaryMoo429]

On Tuesday I reinstated .5mg of liquid Lexapro and have taken 6 weeks off from work as I’m not able to function right now. I know that there is a really high chance that this will make my withdrawals worse but I know there is also a very small chance that it may help relieve some of my symptoms.

 

I know I will most likely end up crawling back with my tail between my legs but even the slightest chance that this will work makes me feel like I have to try it.
 

I am terrified and don’t know how to tell if it is working, doing nothing, or making things worse. I’ve read the pages here on reinstatement and am keeping my own personal journal at the moment. 

[getofflex]

2 minutes ago, MaryMoo429 said:

On Tuesday I reinstated .5mg of liquid Lexapro and have taken 6 weeks off from work as I’m not able to function right now.

If you have a bad reaction to this, you could always reduce the dose to 0.25, or even 0.1.  It may very well help.  The best way to do a reinstatement is to start at a very low dose to reduce the risk of kindling.  Here is the thread on reinstatement:

 

About Reinstating and Stabilizing to Reduce Withdrawal Symptoms

 

I'm very sorry you are in this predicament.  I'm glad you have taken some time off work.  I hope you use this time to take utmost gentle care of yourself.  Please keep us posted on how you are doing. 

[getofflex]

8 minutes ago, MaryMoo429 said:

I am terrified and don’t know how to tell if it is working, doing nothing, or making things worse. I’ve read the pages here on reinstatement and am keeping my own personal journal at the moment. 

If it is working, you will feel a decrease in WD symptoms.  Give it about a week.  It takes about that long for it to get into your system and register with your brain.  

 

If it makes things worse, your WD symptoms will feel worse.  It's great that you are keeping a personal journal.  I've been keeping one for several months, and it has helped me to see what things trigger my WD symptoms.  I've found that I get triggered by MSG in food, thunderstorms, sudden weather shifts, major stress, and toxic people.  

[MaryMoo429]

@getofflexis it ok to switch down to .25 or .1 tomorrow if I’ve been taking .5 for three days now? I’d rather start as low as you recommend to see how my body handles it. 

[Mia1]

26 minutes ago, MaryMoo429 said:

 

I am terrified and don’t know how to tell if it is working, doing nothing, or making things worse. I’ve read the pages here on reinstatement and am keeping my own personal journal at the moment. 

It’s good you’re on a very low dose, just keep monitoring how you feel and try not to be anxious about the reinstatement. Allow yourself to relax and enjoy this much needed time off for yourself, you really deserve it. Keep us updated on how you are doing, sending you a lot of healing energy. You are going to be okay 💖

[deg1979]

Hey, @MaryMoo429, I just caught up on your thread. It really stinks that you’re going through this. Do you think your covid booster set this off?

 

Remember, it’s not moving backward; it’s moving forward. You are where you are in withdrawal; you are doing your best to make choices that will help you continue moving forward. Reinstating Lexapro at this point may feel like moving backward, but it may very well be part of your success story. I really hope it works!

 

You will be in my thoughts.

[getofflex]

1 hour ago, MaryMoo429 said:

@getofflexis it ok to switch down to .25 or .1 tomorrow if I’ve been taking .5 for three days now? I’d rather start as low as you recommend to see how my body handles it. 

Yes, that is OK.  Your body hasn't yet had a chance to adjust to the 0.5, so it should be OK.  👍

[MaryMoo429]

Thank you everyone for all of the support.

 

I had a rough night last night where I had extreme warm energy rushes radiating over my heart area, into my stomach and down my left arm. This was coupled with intense physical anxiety in my stomach. 
 

I got up around 1:00am when I couldn’t stand it anymore and took a bath with Epsom salts. When I got back in bed these feelings had mostly subsided but I was struck with intense insomnia. I think I slept an hour last night. 

 

I don’t know if these feelings are being made worse by the reinstatement of .5mg of Lexapro for the past three days. Not sure if I should reduce to something like 1mg or if I should just stop altogether. Not sure if I even can just stop after taking this dose for three days. 
 

Any suggestions would be appreciated. I have been taking this at 8am each day so it’s about time for me to take it if I’m going to at all. 

[MaryMoo429]

@deg1979 Yes I believe the booster caused me to have a bad reaction - mentally though - not as much physically. I think the stress from it totally sent me into a debilitating wave of worsening symptoms.  I didn’t get the typical sickness people get from the booster like a fever and chills or anything like that though.
 

I was so nervous before getting it, while getting and after getting it that any symptom I felt in my body I questioned whether it was a bad reaction to the shot or not. I think this made my health ocd spiral out of control and created a terrible two weeks of severe panic attacks, two trips to the ER and increasing agoraphobia. I feel like I had a nervous breakdown to be honest. 
 

I tried to reinstate the meds but have not taken it today and don’t think I can do it for a similar reason as my reaction to the booster. I’m so scared of what the meds are doing in my body and to my brain now that it only heightens my anxiety and symptoms more. So the last two days when I took them, I would feel immediately bad after and not be able to tell if it was from the meds or just my typical withdrawal symptoms I’ve been dealing with the past year. 
 

Rather than continue on like this and get to a point where I feel like **** still but then have to taper anyways, I’d rather just stop right now and try to deal with whatever the hell Is happening in my body. I just know my doctor is going to be upset and disagree with my decision. She doesn’t understand my point of view. 

 

 

[getofflex]

1 hour ago, MaryMoo429 said:

So the last two days when I took them, I would feel immediately bad after and not be able to tell if it was from the meds or just my typical withdrawal symptoms I’ve been dealing with the past year. 

This tells me that you may be having a bad reaction to the meds.  I assume by the "meds" you mean the 0.5 mg of Lexapro?  So am I correct in assuming that you feel significantly worse since reinstating the 0.5 mg of Lexapro? 

 

If it were me, I would either drop to a much lower Lexapro dose, such as 0.1 mg, or I would just stop altogether.  Do you remember what month in 2020 you jumped entirely off the Lexapro?  

 

1 hour ago, MaryMoo429 said:

I was so nervous before getting it, while getting and after getting it that any symptom I felt in my body I questioned whether it was a bad reaction to the shot or not. I think this made my health ocd spiral out of control and created a terrible two weeks of severe panic attacks, two trips to the ER and increasing agoraphobia. I feel like I had a nervous breakdown to be honest. 

It is possible that the stress and worry is significantly contributing to your symptoms.  Fear and panic will create adrenaline and cortisol in your system, which can further destabilize your nervous system.  I would suggest that you find some non drug ways of coping with the health anxiety, and the fear and panic.  Here are some links that may help.  

 

Audio:  First Aid for Panic (4 minutes)
 

CBT Course:  An Introductory Self-Help Course in Cognitive Behaviour Therapy
 

Audio:  How to Recover from Anxiety - Dr Claire Weekes
 

Anxiety Stuff - all kinds of stuff about anxiety attacks and things that help ...

 

Health Anxiety, etc.

 

Repetitive Intrusive Thoughts, Panic

 

I'm very sorry to hear that you are dealing with all this.  It's bad enough going through PAWS (post acute withdrawal syndrome), but then to have the COVID stuff and shots on top of that.  Please hang in there, and do what you can to try t remain calm, and not to focus too much on your symptoms, as this will just create a downward spiral of more and more panic and anxiety.  I know, easier said than done.  Try reading this success story.  Shep recovered from being polydrugged, and now is able to live a normal life: 

 

Shep's Success: Leaving Plato's Cave

[MaryMoo429]

@getofflex Yes by the meds I’m referring to Lexapro, sorry for the confusion. 
 

So about an hour after I took the .5mg of Lexapro yesterday I was hit with a huge wave of anxiety and what felt like a mini heat flash. It didn’t last too long as I immediately went outside and started snow blowing the entire driveway. I just had a lot of anxiety though for the remainder of the day that was hard to shake and made me feel like I had to keep moving. Then last night I had those awful energy surges in my chest. 
 

In 2020 I jumped from 2.5mg to 0 on September 14th. Then was pretty much fine until November 8th when I had a really bad panic attack and it was all downhill from there. I did fine during the fast taper down from 10mg over the course of 4 months. 
 

I haven’t taken Lexapro today and what’s weird is right now I feel the best I’ve felt in a while (and I only got about an hour of sleep last night so I normally would be feeling awful). I can’t explain it but I just feel pretty good and like my anxiety is gone (at the moment) - it’s a feeling I haven’t experienced in a while.

 

What I need guidance with is knowing whether I should equate this to taking .5mg of Lexapro on Monday, Tuesday and Wednesday or if you think it’s more likely from NOT taking the Lexapro today? I know there’s no way to know for sure but I’d be interested to hear your opinion as I want to make the best decision I can as to whether or not I should keep taking it. 

[Mia1]

5 minutes ago, MaryMoo429 said:

What I need guidance with is knowing whether I should equate this to taking .5mg of Lexapro on Monday, Tuesday and Wednesday or if you think it’s more likely from NOT taking the Lexapro today? I know there’s no way to know for sure but I’d be interested to hear your opinion as I want to make the best decision I can as to whether or not I should keep taking it. 

I think that you were so anxious about taking the medication that when you took it your symptoms got worse. Since you made the decision to stop taking Lexapro that anxiety about taking the medication is now gone and you are feeling better, there is no more pressure on yourself at the moment.

 

 I know it’s so hard to not second guess ourselves but we really all do have the answers within us to heal. It sounds like you made a good decision, I would stick with it and look into non drug coping skills. I’m doubtful such a minuscule amount of Lexapro would have helped you anyway, especially in such a short amount of time. Put the work in and you absolutely will get better. 

[MaryMoo429]

@Mia1 I know it’s so awful because now that I haven’t taken the Lexapro today I’m totally second guessing my decision to stop. Since I’m having a weird window of feeling good right now, and good in an old familiar way (that I haven’t felt in a while) I’m like, well maybe it’s the Lexapro I took the last few days finally registering in my system. 

[Mia1]

I understand but I just think it’s more likely that because you stopped the worry over taking the medication it has given you some peace right now. I don’t believe anyone actually needs medication, I think we just need to figure out a way to heal our trauma (I like using that word instead of mental illness which I no longer believe in.) I believe this is attainable for anyone regardless of their symptoms or situation. Find out how you can give yourself this peace by healing your anxiety/OCD whether it be through CBT, DBT, meditation, etc.

 

You really can do this, learn how not to be afraid of anxiety, panic and OCD. It’s your fear of it that’s making it so intense and unbearable. If you think about it anxiety is just a series of sensations in the body, what’s there to be afraid of? It’s your thoughts about anxiety that’s really causing the problems, attaching to the story of your mind. I really feel that acceptance is the cornerstone to healing. As Eckhart Tolle says whatever we resist persists!! Read Claire Weekes if you can, she was a master at this stuff and way ahead of her time. Acknowledge it, accept it and let it go. This is the work, you must practice.

 

And anytime doubt creeps in, which it will because anxiety loves doubt, remind yourself of how strong you are, how much you have already overcome and focus on the good stuff. Because really there’s always a lot of good stuff to focus on and we get to choose where that focus will go. That’s a lot of power!!

[MaryMoo429]

@Mia1 I totally agree with you that no one or most people, do not actually need medication and I would never have gone on medications knowing what I know now. I honestly think they’re poison. However, I also believe the medication changes our brains once on for a long time and adapts to function best (and without discomfort) when present in the system. 
 

Its just so bizarre, I literally just went on a drive by myself a half hour away from my parents’ house and was totally fine. That physical sensation of anxiety in my stomach was not there and my mind was clear and no negative intrusive thoughts or feelings of complete terror and doom. I don’t understand how a flip just switched like that when I can remember and feel how debilitated and crippled with symptoms I was not even 24 hours ago. 

 

I hope you’re right and that this doesn’t have anything to do with the Lexapro I took the last three days, and that I have been able to tap into this ON MY OWN but it all just seems so strange when I haven’t been able to drive by myself in over a week and have been overwhelmed with such intense anxiety and agoraphobia I was literally crawling out of my skin and could not keep still without feeling like I was losing my mind. Bad restless legs and akathisia which is all now gone at the moment. 
 

If it is from the Lexapro I just don’t want to miss this opportunity to feel better if I’m at all able to. It’s just so frustrating because I can’t tell what caused what. Makes it hard to make the right decision. Especially when certain decisions can cause very harmful outcomes which you may not realize until it’s too late. 

[MaryMoo429]

I spoke too soon. I just went on another drive and had a massive panic attack out of nowhere where my heart was beating so fast and skipping beats and it was pure terror. Like right after I wrote the post above. Ughhhhh. 

[Mia1]

@MaryMoo429I think you’re putting way too much pressure on yourself. I think trying too hard to figure out why you were feeling good most likely caused the anxiety, the worrying creating friction and pressure. Sometimes things are what they are and if we can accept them we can find peace in any situation. 

[getofflex]

3 hours ago, MaryMoo429 said:

What I need guidance with is knowing whether I should equate this to taking .5mg of Lexapro on Monday, Tuesday and Wednesday or if you think it’s more likely from NOT taking the Lexapro today?

I have no way to know this.  

 

Have you felt significantly worse, on average, since you started the reinstatement?  If so, then I would suggest you stop the reinstatement immediately.  

 

Personally, if it were me, I would stop the reinstatement, but that is your decision to make.  The windows and waves pattern is very typical of recovery from psych meds.  You were on quite a lot of meds in the past, and it can take years to recover from something like that.  Not only that, reinstatements are a crap shoot when it's been over a year since you were on the drug.  I agree with Mia - I would work on non drug coping strategies (like in the links I posted above) for dealing with anxiety and panic.  There are many non drug techniques for dealing with anxiety and panic.  

 

Would you please update your drug signature with the month that you stopped Lexapro back in 2020?  Thank you.  

 

 

[MaryMoo429]

@getofflex Can you repost the link for the Claire Weekes audio? It won’t load for me. 
 

I’ve decided to stop the Lexapro as I think I was feeling worse. It’s hard to say though as I feel just as bad tonight. I just don’t think it’s worth the risk right now. 

[ChessieCat]

16 minutes ago, MaryMoo429 said:

Can you repost the link for the Claire Weekes audio? It won’t load for me. 

 

It's disappeared.

 

There are videos on YouTube.  Try these.  If they are good, please PM me and I will try to update links:

 

Dr Claire Weekes - Recovering From Excessive Anxiety - Parts 1, 2 and 3

 

https://www.youtube.com/watch?v=tShiAJO9hGc

https://www.youtube.com/watch?v=KG0-bz-4SaQ

https://www.youtube.com/watch?v=dVg9nsMj7Dk

 

Also:

 

Anxiety Recovery | Dr. Claire Weekes | 'The Correct Inner-Voice'

 

https://www.youtube.com/watch?v=d29vk9RDKNM

 

 

And these:

 

Audio:  First Aid for Panic (4 minutes) Female voice - getselfhelp.co.uk
 

Audio:  First Aid for Panic (4 minutes) Male voice - getselfhelp.co.uk

[ChessieCat]

This is the search string I used on the YouTube site.  There are lots of videos:

 

https://www.youtube.com/results?search_query=claire+weekes+how+to+recover+from+anxiety&sp=EgIYAg%3D%3D

[MaryMoo429]

Thank you I listened to the first one last night in the bath tub and it was good. I will be listening to more today. 
 

Im suffering from really bad akathisia right now. It’s a little better this morning but still there. Last night I had it so bad in my legs more than anything that I could not lie down in bed or keep my legs still

without kicking them. It feels like my muscles are writhing and twisting uncomfortably in my body. 
 

I had to get in the tub, ride the stationary bike and dog yoga stretches. My mom also tried to massage my legs and I used compression socks and a magnesium rub on my legs. 
 

This was coupled with the warm energy surges in my chest and a feeling of all of the muscles in my stomach being on the verge of tremors/seizing with each breath I took. 
 

When I got back in bed I did my best to just let the sensations be there and try not to react to them and cause them to become even more intense by adding a “second fear” to them (what Claire Weekes discussed in the video I listened to). This was very difficult as these sensations are so awful and make me feel like I need to craw the f out of my skin. 
 

These sensations are also fairly new to me and have grown in intensity since I had the booster shot (developing about a week after). I’m wondering if all of the stress I’ve been under has created new symptoms in my overly sensitized body? 

[getofflex]

12 hours ago, MaryMoo429 said:

I’ve decided to stop the Lexapro as I think I was feeling worse. It’s hard to say though as I feel just as bad tonight. I just don’t think it’s worth the risk right now. 

This sounds like a good thing that you stopped.  It will take some time for your system to recover from this.  I'm glad you are listening to the videos.  Hang in there.  Things will eventually settle down.  In the meantime, be ultra gentle on your nervous system.  

[Happy2Heal]

On 12/4/2021 at 8:39 AM, MaryMoo429 said:

When I got back in bed I did my best to just let the sensations be there and try not to react to them and cause them to become even more intense by adding a “second fear” to them (what Claire Weekes discussed in the video I listened to). This was very difficult as these sensations are so awful and make me feel like I need to craw the f out of my skin. 

oh yes this is  really hard to do but just being aware of that added second fear will be a huge help to you as you go forward. I am very sorry you've got these symptoms, but they will eventually get better and go away. 

Lexapro is a very strong drug and no picnic to get off of. 

you can be proud that you have done so well for so long.

I'm glad you got some time off from work. Having less stress should help you manage the symptoms and may even reduce they somewhat.

 

hang in there, we are all rooting for you ❤️

 

[MaryMoo429]

Strong feelings of akathisia still along with extreme tinnitus. I’ve been running the past two days which seems to have helped the akathisia in my legs. However I now have the feelings in my upper body and even my head. It feels like the inside of my body is almost itchy and squirmy, it’s hard to explain and I feel a constant buzzing feeling. 
 

The scariest feeling is when I’m breathing and it feels like the muscles around my lungs are shaky and need to contract/tighten and try to pull me into a crunch position. This is often paired with intense physical anxiety in my stomach. I can feel the warm energy. It’s like a constant flow of that feeling you get when someone jumps you and your stomach drops. I can feel it there like hot lava. 

I’m trying my best to replace my negative thoughts with positive ones. This morning I listened to a YouTube video for health anxiety positive affirmations by Dennis Simsek (the Anxiety Guy). I find many of his videos and podcasts to be helpful for health anxiety. 
 

This is the one I listened to this morning. I’m going to try to listen to it before I get up each day. 
 

 

[Mia1]

I wanted to check in and see how you are doing?

[MaryMoo429]

Hey @Mia1 I’m doing just about the same. I tried to reinstate again (this time higher doses of Lexapro and Ativan) after ending up in the ER again last Friday. I know it was dangerous to do this but I was so desperate again. 
 

The Ativan helped me to relax and slowed everything down but I still felt like **** underneath it. It wasn’t like in the past when I would take a benzo and it would make me feel 100% better. On the second night I also got parathesia in my upper back that felt like I was covered in Ben Gay so once again I had this epiphany that I can’t take another psych med again no matter what. 
 

my doctor also reached out to me to say that she had spoken to her psychiatrist friend and she recommended I start a low dose (2mg) of Abilify. When I looked this up and saw that it is an antipsychotic I really got upset and that was pretty much what did it for me and made me have this sense of painful clarity that I cannot ever again use another psych med. 

 

Her recommending Abilify has also made me have this reoccurring intrusive thought that what if I’m becoming schizophrenic or something? Like what if all the Adderall I took messed with my dopamine receptors so much I now become psychotic a few years later? It just made me really upset. I’m trying to just let it go but the thoughts jut pop up again and again. 
 

Overall though I feel the same as I have for the last month - since after the booster shot and before reinstatement. I just find it so strange how right after the booster (exactly a week) I developed pretty intense restless legs and akathisia in my body. I don’t understand why I would develop this 14 months off of all meds (and prior to trying to reinstate).

 

This has been the most bothersome symptom for me. It is pretty much there all the time and sometimes even feels like my whole body is almost itchy especially in my face (forehead and nose and weirdly almost in my brain). It is so disturbing.
 

I have a hard time riding in the car because it’s so uncomfortable to not be able to move around. I also now have been lying on the floor on my yoga mat instead of sitting in the recliner because it feels better for me to sprawl out on the floor. I actually am

able to get some relief like this most times. 

 

The energy surges at night had been getting really awful and then disappeared for 3 nights but then came back last night. I also have a buzzing in my upper body and muscle rigidity. I often have to consciously remind my body to relax because it is just tensed up all the time. Sometimes though it’s hard for my muscles to relax even when I really really try. This feels very much tied to the akathisia. 
 

I know akathisia is usually linked to problems with dopamine so this is further exacerbating my fear about being psychotic. I know they say ADs and benzos can also cause this but it still just makes me nervous and I’m really confused as to why I developed this new symptom and got worse 14 months out. 
 

I have an appointment with a new counselor on Monday who I think will be good and I have also been looking into an IOP that meets three days a week online. This won’t start until mid January however. I’ve also been doing mediations and yoga and walking/running on the treadmill and walking my dog. 
 

I’m still unable to drive on my own but have been doing so with either parent daily. I did try to drive on my own three days ago and beforehand tried the “mental movie” technique where you close your eyes and envision what your about to do and the best possible outcome. You really try to feel what your imagining to connect the act (of driving) with that positive outcome. 

I only made it about a mile down the road and then turned around and went by my house and drove another mile down the road in that direction. I then went back and forth about 4 times until I called it quits. It was really hard but I will continue to try and practice this technique so I can begin to associate driving with something positive rather than the recent traumatic experiences I’ve had having panic attacks. 
 

I also want to start doing my own form of mediation where I create a mental image in my mind of my brain and body healing. I just need to decide what that picture would look like to me. I’m thinking of trying to picture my receptors up-regulating and functioning properly but not sure if this is what I should go with or not. Whatever I choose I want it to be something that I can really picture and try to feel happening. 
 

[deg1979]

Hey, I just want to jump in here and give you some big ((hugs))! You sound like you are actually doing a great job of applying your anxiety management skills and even seeking out new emotional tools to help you. And most of all, I hear hope that though you are facing a setback, your brain and body WILL heal and you will be free of these symptoms in the future.

 

I also wanted to add that my daughter used to take Abilify, but for bipolar disorder not schizophrenia. If I could argue with your intrusive thoughts, I would tell them that in the dr’s minds it probably looks to them like you have bipolar disorder because you have periods of doing well and periods of relapse. But I 100% believe they think that because they do not accept or understand this process of brain remodeling and central nervous system healing that all of us are facing. I agree that your covid booster did destabilize you; in fact, I’m not going to get mine at this time. I am making sure all my family members have all of their boosters, and I’m religiously wearing my KN95 mask and staying out of crowds because I worry that a bout with covid would cause the same result. 
 

Again, I am just so impressed with your ability to grab this relapse in symptoms by the horns and tell it who’s boss. I will tell you what my therapist said when I was having the intrusive thought that I was worthless and afraid I wouldn’t be able to be a good mother to my kids. She said that’s not true—you are doing everything you can to get better and improve. And that is actually called “high functioning” in the therapy world. It means that we are the patients who get better, not the ones who stagnate and do not get better. I love therapy even though I know I am in a physical state of recovery from AD and benzos because it helps us use the tools we can control to manage the symptoms we can’t control. Now, getting my therapist and PMHNP to accept that is another thing entirely.

 

Let me reiterate that you should not take the Abilify. Or any other psych meds. And from my own personal experience, I believe the Ativan and Klonopin I was prescribed post-adverse reaction really intensified and contributed to my suffering overall. I noticed very clear interdose withdrawal a couple days after I’d take the Klonopin. I only took the Ativan a few times, but from what I know it is short acting and would maybe even cause hairier interdose withdrawal. Also, I think our destabilized nervous systems are much more likely to experience these adverse symptoms like interdose withdrawal. I do not want to advocate drug use, but if you do feel the need for Ativan, consider trying hydroxyzine again. Here’s the thing about it. It does not take it all away like benzos. Think of it more like a tool that lowers the anxiety level. For me, at the beginning, symptoms were still unmanageable, but as I have taken it consistently over time (every 8 hours I take 25 mg), I have noticed so much improvement. It doesn’t remove the anxiety completely, it lessens it. It is an antihistamine; prescribers seem happy to write an rx that isn’t a benzo. I was very worried about taking it every 8 hours since no one else on here seems to, but I found a study where they used it as a first line treatment for anxiety and agitation in autistic children, and said it was much less harmful that traditional benzos or ADs and that it worked by lowering the level of activity in the brain and overall having an anti-inflammatory effect. You can use it for months without major side effects. My dr just said to get off it when I could because it’s better not to take it, but that taking it is much, much better than taking a benzo. He said he likes people to try stopping when their symptoms diminish, but as a guideline he said six months but if I take it for a year, no big deal. The main concern is anticholinergic effects contributing to dementia or memory issues in older adults. I have none of these symptoms; my memory is much better on it than it was off it when I had such horrible anxiety post-AD. Anxiety, for me, was the memory disruptor! Also, I hated it when I took it the first few times because it made me feel sleepy, but over time you don’t feel that anymore, in the same way you wouldn’t if you took Benadryl every day. Again, I know we do not advocate any medications, we are about getting off medications, but I wanted to share my personal experience with using hydroxyzine basically as a harm reduction to avoid a benzodiazepine dependency.
 

I’m not a medical professional, and my main motivation is to see you find a way to manage your worst symptoms without benzos. Also, my PMHNP says he doesn’t know anything about the anti-inflammatory benefits I mentioned and said many of his patients take it as needed for anxiety, so they just take it when they need to. That is not what I have done, though. I really felt like I was in an anxiety loop that was caused by my AD and its CNS destabilization, and lowering my anxiety level consistently helped me to improve. I have been skipping my afternoon dose on days when I don’t feel a need for it. I’m taking it three times a day right now because I experienced a return in symptoms yesterday because my 4 year old dog is fighting for his life in a vet hospital. He has a rare autoimmune condition. It was a huge shock to us, and helping my five kids navigate the grief has also compounded my grief. He may still be OK, but he is so sick I am preparing myself. I woke up at 5 am with anxiety, which I haven’t done in a couple weeks. 

 

I am reaching across the US to give you a virtual hug and tell you that you are awesome for digging deep and finding all those tools to help you. That is what recovery is about. You find a way. Don’t listen to the intrusive thoughts. BTW, my daughter does have bipolar disorder and she does need the atypical antipsychotic to control symptoms, and I see none of that in you. Zero. Keep on truckin’. I hope this relapse in symptoms will subside sooner rather than later for you, because you know how to play this game—you’ve already done it—and because it may be a more temporary setback the the initial withdrawal from psych meds. You sound like you’re making progress. Focus on that. Sometimes it’s difficult for us to see that, and we need others to point it out. But you are doing better all the time. 

[Mia1]

1 hour ago, MaryMoo429 said:

my doctor also reached out to me to say that she had spoken to her psychiatrist friend and she recommended I start a low dose (2mg) of Abilify. When I looked this up and saw that it is an antipsychotic I really got upset and that was pretty much what did it for me and made me have this sense of painful clarity that I cannot ever again use another psych med. 

I personally don’t believe anyone actually needs medication so as painful as this experience has been for you it’s good it happened because you really see this now for yourself. And you really are equipped to handle what’s going on, it’s not going to happen overnight but it will happen, eventually you’ll start to see improvement and it will keep gaining momentum and you’ll never have to rely on anything other than yourself again. It’s so empowering.
 

As for the Ability I wouldn’t read into it, this medication is prescribed as much for anxiety as it is for schizophrenia. Years ago my therapist wanted to prescribe this for me as a PRN for anxiety, there’s just no rhyme or reason to it. 
 

On a side note I remember reading that Thorazine was initially prescribed for pre op patients and when the doctors realized how sedating it was they started treating schizophrenia patients with it and that’s how it came to be an “anti psychotic” so you really have to keep all this in mind when dealing with doctors, the vast majority just don’t have a clue.

1 hour ago, MaryMoo429 said:

Her recommending Abilify has also made me have this reoccurring intrusive thought that what if I’m becoming schizophrenic or something? Like what if all the Adderall I took messed with my dopamine receptors so much I now become psychotic a few years later? It just made me really upset. I’m trying to just let it go but the thoughts jut pop up again

This is what I call health anxiety OCD and I’m very familiar with it. You’re absolutely not becoming schizophrenic, you have OCD thoughts that revolve around your health and make you anxious. I find the Claire Weekes method works as well for OCD as it does straight anxiety. Acknowledge, accept and let it go. Have you been able to practice this? 
 

 

1 hour ago, MaryMoo429 said:

This has been the most bothersome symptom for me. It is pretty much there all the time and sometimes even feels like my whole body is almost itchy especially in my face (forehead and nose and weirdly almost in my brain). It is so disturbing.

I have had akathisia throughout this journey and currently have it pretty intensely because of my Klonopin taper. There are some self care skills that can certainly help such as stretching, yoga, meditation, but personally I found that acceptance was the key to healing. It doesn’t make it go away but it helps create some space so you can live with the symptoms while they are there. I found it was the resistance to the symptoms that increased the intensity and duration of them and subsequently caused my suffering. It was my reaction. 

 

 I know it sounds so counterintuitive, why would you want to accept something that causes such discomfort? And the answer is because it will bring you peace and release the anxiety that you are creating around it by not accepting it. Remember, you are accepting that right now this is how you feel, that beyond what you are doing there is nothing else you can do. You are accepting yourself in this moment.

 

This works with literally everything. I continue to have a lot of intrusive thoughts and have had some around driving as well. I used to have this thought that I would pass out while driving on the highway and have an accident. The thought produced a lot of anxiety and my heart and thoughts would start racing. Because I was already practicing acceptance daily I simply accepted this thought and the anxiety it brought. I let it be there without engaging in the thoughts but without trying to change them either. It went away in a week. 
 

I can’t stress this enough, acceptance is the key to healing. We have very little control over what happens to us in this life. The one thing we always have control over is how we respond. Always.

1 hour ago, MaryMoo429 said:

also want to start doing my own form of mediation where I create a mental image in my mind of my brain and body healing. I just need to decide what that picture would look like to me. I’m thinking of trying to picture my receptors up-regulating and functioning properly but not sure if this is what I should go with or not. Whatever I choose I want it to be something that I can really picture and try to feel happening. 

This is a fantastic idea, I do my own meditation as well. We all have the answers on how to heal within, I think it’s great you’re tapping into that. Keep up the good work, you really are going to get better.

[Happy2Heal]

2 minutes ago, Mia1 said:

On a side note I remember reading that Thorazine was initially prescribed for pre op patients and when the doctors realized how sedating it was they started treating schizophrenia patients with it and that’s how it came to be an “anti psychotic” so you really have to keep all this in mind when dealing with doctors, the vast majority just don’t have a clue.

very true.  Thorazine was (and probably still is) used as a chemical restraint, they give you such a high dose you are knocked out for hours or even days. Same with haldol.

 

 

back in 1974 I was forcefully given a first generation "anti psychotic" when my diagnosis was "adjustment reaction to adolescent"

Now those drugs are in my medical history and virtually EVERY single dr I see now believes I have a history of pyschosis. Not fun

Drs, psych hospitals, etc have been prescribing  these heavy duty drugs "willy nilly" for decades. 
One psychiatric nurse I was seeing laughed about giving his wife seroquel for her "PMS" because it was the only way he could stand her mood swings, it knocked her out, and said that he felt all women should be heavily medicated with high doses of seroquel. ~  it scares me how much trust is put in these dangerous chemicals by those who have likely never taken them themselves (because if they had, they'd probably think twice about passing them out like candy- at least in most cases)

Seroquel was being prescribed for insomnia, anxiety, PMS, all sorts of absurd off label uses. I believe the manufacturer was one of drug companies that was sued because of them pushing the drug for all sorts of things it was never approved for.

Abilify and Latuda and Pristique have taken it's place but it's all still the same game, oooh new drug, let's Rx it for everything. 

 

yep it was astra zeneca https://www.genengnews.com/news/astrazeneca-to-pay-520m-settlement-in-seroquel-lawsuit/

 

the manufacturers of Abilify have also been sued for various reasons:

 

https://www.drugwatch.com/abilify/lawsuits/

 

I don't know if anyone ever needs to take any of these drugs, I think there might be some limited cases where they MIGHT be helpful, I honestly do not know. But only for VERY severe illness   that doesn't respond to any other treatment, (and at the lowest dose for the shortest amt of time) as virtually all of these drugs have such serious side effects and can be so hard to come off of. 

It's downright criminal that they were and still are, passed out like they are harmless.