17+ months off checking in

[[Re...]]

 

Buddies,

I wanted to pop in and share an update. This site helped save me from further harm, and I want to help others by sharing my experience as I recover. I am not out of the woods and hope to write that success story at some point. I am, however, 100 percent free of psych meds and have been for seven months and a week after being polydrugged. I was blind-tapered off of the Seroquel that complicated benzo withdrawal and found out that I was off that longer than I had realized in the previous posts that I wrote.

I am just around 17 months off Ativan, and a little over 7 months off Seroquel.

I don't take supplements, I eat organic/grass-fed, etc., and I do not consume sugar, soda, seed oils, dairy, alcohol, caffeine, or substances of any kind. I have eliminated the strong chemical products from my life across the board. I still feel like I am in a game of opposites so I will stay this way out of caution.

I will start with some positive signs: I sleep. After a year plus of not sleeping and being jolted awake if I did sleep an hour or more by akathisia, I sleep. Albeit broken I sleep 8-12 hours a night. I am exhausted beyond belief constantly and can't believe how much I sleep. But I am grateful. I can usually fall back asleep rather quickly as well with little issue. I have had long windows of not pacing. I have had spikes in the pacing, and the last one was on Thanksgiving so almost three months ago. I can sit still again most of the time and I have even been able to watch some TV. My cognitive function has greatly improved along with my memory.

I do not experience waves and windows and never have.

I am still housebound with around 25 symptoms, and I picked up a new one back in November -- a frozen shoulder. Which I now understand can happen from this. The frozen shoulder pain was so bad I felt like my muscles were being ripped off my bones for months. I lay on ice and heat for hours day after day until that passed. PT and massage made it worse! Massages for my shoulder caused a rigid feeling all over again all over my body. The pain felt like being back in acute. It was wild. I still have a limited range of motion but that excruciating pain is gone.After surviving severe pacing akathisia, to get this was unbelievable. Talk about poetic injustice. But this whole experience has been a s**t storm tsunami, to put it mildly.

Isn't it strange that you can become so desensitized by pain that you can talk about it so casually!? Also, crazy how time is a total blur going through all of this. I don't know what day of the week it is, the date, or have any time awareness.

Here are the other symptoms I am still dealing with overall:

- Acne
- Akathisia (mild)
- Body odor
- Chemical sensitivity
- Dry skin
- Ear popping
- Eye floaters
- Headaches
- Heart palpitations (in the middle of the night, better)
- Hyperacusis
- Inner vibration
- Light sensitivity
- DPDR (mild, intermittent)
- Nose burning
- Numbness
- Restless legs feeling (occasional, at night)
- Skin burning
- Stress sensitivity
- Tinnitus
- TMJ pain (improved)
- Traumatic stress (from this horrific experience)
- Vertigo (occasional)

So yes, I still have quite a list. I notice symptoms now cluster, meaning, if I have a surge of tinnitus it is accompanied by spiking skin burning, inner vibration, and heart palps typically between the hours of 2 am-7 am. I have not had a true window where symptoms drop off for some time like I read about on this site. It seems like I am doing a slow crawl out of hell so to speak. I am concerned obviously about the longer-term effects of having akathisia and limitations one has to bear and the tinnitus scares me as I know some people are not able to entirely shake that symptom. The tinnitus happened four days off the Ativan so I did not have it before the withdrawal. I got my hearing checked and it is fine.

I think about @[Me...] quite often and @[...]SouthernBell and @[Tr...]and others who were severe, polydrugged and healed. I remember Megan saying she had two dozen symptoms her second year then in her third year had a spike then things started dropping off one by one. And in year six her tinnitus went. I know SouthernBelle is back to her life totally along with Traumatized. So this gives me hope as it is impossible to live with a nervous system too overwhelmed to ride in a car or experience life at a normal volume. But this is where I am at the moment. I feel like a bubble lady, so I am taking things one day at a time. I am at the point on the recovery timeline where you start measuring by months rather than weeks so I will be checking in once in a while until I have significant news to report.

I wish everyone here health, wellness, and strength on this journey. For some of us, it is longer than others. Much love to all of you.

 

[[Nu...]]

Much love to you, @[Re...]. Glad you have a glimmer of hope. You'll get there.

Thank you for the update.

[[Re...]]

Hi Buddy, Thanks for the comment. May the force be with us all.

[[ne...]]

14 months off and much of the same. Great job @[Re...] and hope the symptoms start saying goodbye soon! <3 

[[Wi...]]

Glad it’s not that severe anymore!
I keep holding onto hope by reading the posts by Traumatized80 because I have many of her symptoms, especially the electricity. However, it doesn’t feel like they are going away for me, just worse for now. Still need to have some hope. 

[[Bo...]]

Hugs @[Re...]!!
Wishing you continued healing and that things get back to 100% your full health soon. Youve made great progress even if it feels still so hard…. Keep coping and know this stuff will drop off. Hugs.

Thanks for your messages also in helping me persevere thru the aka hell… made huge mistajes and paying for it but one day hope to be having things calm to how you’re experiencing them.
 

your full healing is one day closer.💜🙏💜🙏💜
 

[[Ti...]]

AMAZING @[Re...]  So happy to hear that even though it's slow that things ARE progressing. Question - do you feel anxiety/terror with the Akathisia ? or is it mainly with the feeling of having to pace? Also do you experience depression? It's so hard for me to identify in myself what is prolonged anxiety attack that makes me want to pace/flee. Versus akathisia. To me it feels like they are so close together that they blend. If my anxiety gets so severe it can morph into Akathisia. Do you see that bilateral relationship in your own experience? 

 

all the best - i am rooting for you!!!!   

[[WU...]]

On 16/02/2024 at 04:43, [[R...] said:

PT and massage made it worse!

Yes exactly the same for me. It must be because the "problem" is all on the inside and nothing external is going to help until the receptors are healed and the muscles and tissues work properly again. 

[[Re...]]

On 16/02/2024 at 05:13, [[n...] said:

14 months off and much of the same. Great job @[Re...] and hope the symptoms start saying goodbye soon! <3 

You too, buddy! Right back at you!

[[Re...]]

On 29/02/2024 at 11:21, [[W...] said:

Yes exactly the same for me. It must be because the "problem" is all on the inside and nothing external is going to help until the receptors are healed and the muscles and tissues work properly again. 

I think it has something to do with increasing blood and lymph circulation. I notice a relationship between increased heartrate and symptoms also.

[[Re...]]

On 29/02/2024 at 10:58, [[T...] said:

AMAZING @[Re...]  So happy to hear that even though it's slow that things ARE progressing. Question - do you feel anxiety/terror with the Akathisia ? or is it mainly with the feeling of having to pace? Also do you experience depression? It's so hard for me to identify in myself what is prolonged anxiety attack that makes me want to pace/flee. Versus akathisia. To me it feels like they are so close together that they blend. If my anxiety gets so severe it can morph into Akathisia. Do you see that bilateral relationship in your own experience? 

all the best - i am rooting for you!!!!   

Tikvah, I am going to answer your questions one by one:

Do you feel anxiety/terror with the Akathisia ? Not really anymore. Some slight spikes in a chemical feeling but it is not anxiety -- totally different.

Do you experience depression? I do not use the word depression any longer as I do not believe in mental health labels. I feel afraid, I feel sad and like this isn't really happening to me. (Still some DPDR at times with things not feeling real which was part of the akathisia for me.)

Do you see that bilateral relationship in your own experience? No. Akathisia is a totally different feeling for me than anxiety. If I feel afraid or nervous, I'll just say that instead of anxiety from now on as well. I was TERRIFIED when in the throes of akathisia and the terror could not be calmed down no matter what. It was like being plugged into a socket and adrenaline being pumped electrically through my body. It was not confusing at all that it was akathisia. It would rev up in my chest then that feeling (like bein posessed) jolted me to move. I couldn't sit still even if I wanted to or stop walking until I ran out of gas so to speak. Hope that helps. Akathisia was not confusing at all. I had never felt that feeling in my life.

I hope this helps! I hope the best for you too buddy!

Edited March 2 by [Re...]

[[So...]]

Ahh yay @[Re...] so happy to see your continued healing!  My akathisia has become mild as well recently, thank God for that!! I never paced but the agitation and restless needing to rock feeling only comes in quick spirts now rather than 24/7 and i feel SO much better mentally, while still being very physically crippled.  Am happy we are both making progress!  I always felt like my story was very similar to yours but with mirtazapine.

[[Re...]]

13 minutes ago, [[S...] said:

Ahh yay @[Re...] so happy to see your continued healing!  My akathisia has become mild as well recently, thank God for that!! I never paced but the agitation and restless needing to rock feeling only comes in quick spirts now rather than 24/7 and i feel SO much better mentally, while still being very physically crippled.  Am happy we are both making progress!  I always felt like my story was very similar to yours but with mirtazapine.

Soapy, I am so glad to hear this news from you. I can do some work now and feel more mentally stable for sure. Although I still can't "relax." No naps for me consistently yet. I wish. But I also think that is due to the vibrating and burning too. Not just the remaining akathisia. I find that my cognitive function is WAY BETTER off a drug than on one. My memory has greatly improved and also my ability to intellectualize. Thank goodness.

Edited March 2 by [Re...]

[[Bu...]]

@[Re...] thank you for coming back and posting this. I’m stuck on the drug still and have had horrific akathsia and terror. I don’t even know how to begin tapering after a failed updose. Your story gives me hope so thank you for coming back to update. I wish you so much healing going forward 🌷

[[So...]]

I have just now finally after over a year been able to relax a bit, thank God.  Surprisingly it kinds happened out of nowhere, I thought I'd notice it, but I did a face mask and realized I was able to relax like 50% one day and that's kinda continued the past few weeks.. praying it lasts!  

 

I'm not sure if it's been getting lower on my meds too but oh my God I almost feel more like myself now than before on the drugs.  I'm down to 3.2mg Celexa and 1.95mg Mirtazapine.  Hopefully it just keeps getting better!

 

I really can't nap either yet bcuz I also have burning skin and my spine is sooo messed up still, it just gnaws and bad pressure.  Some other symptoms but those two bother me the most.  I also get RLS still as well.

 

It seems we're both on the same track we just gotta keep going and putting in the time.. I know you fought for it you really deserve your healing!

[[Re...]]

On 01/03/2024 at 19:51, [[B...] said:

@[Re...] thank you for coming back and posting this. I’m stuck on the drug still and have had horrific akathsia and terror. I don’t even know how to begin tapering after a failed updose. Your story gives me hope so thank you for coming back to update. I wish you so much healing going forward 🌷

Sure thing, Bunnie. I was in the same position even though our stories are different. I wish you healing as well. Social support is paramount -- have you tried Angela Peacock's tapering groups? They might be helpful.

[[Re...]]

On 01/03/2024 at 20:14, [[S...] said:

I have just now finally after over a year been able to relax a bit, thank God.  Surprisingly it kinds happened out of nowhere, I thought I'd notice it, but I did a face mask and realized I was able to relax like 50% one day and that's kinda continued the past few weeks.. praying it lasts!  

I'm not sure if it's been getting lower on my meds too but oh my God I almost feel more like myself now than before on the drugs.  I'm down to 3.2mg Celexa and 1.95mg Mirtazapine.  Hopefully it just keeps getting better!

I really can't nap either yet bcuz I also have burning skin and my spine is sooo messed up still, it just gnaws and bad pressure.  Some other symptoms but those two bother me the most.  I also get RLS still as well.

It seems we're both on the same track we just gotta keep going and putting in the time.. I know you fought for it you really deserve your healing!

You have fought so hard too. When we first connected on another site, we were in such different places. Hard to believe it, honestly. But you are on your way to being off!! And when you are I want to give you a virtual high five! I hope things continue to improve for you buddy. 

[[Bu...]]

@[Re...] yes I have been to a few and they are really helpful! Just trying to figure out my taper from here  

[[So...]]

OMG yes it was so different, we were both the walking dead!! Everything seemed so bleak back then, im so happy we both did it.  It took everything I and presumably you had but we never gave up! I had a friend tell me recently it literally looked like I was going to die from the amount of weight I lost and the condition I was in... all the weight is back on now and I'm already feeling so grateful to be 30% functional again!!  Life will be so great for us after this!!

I will be sure to let you know when I'm drug free!!  Hopefully late summer.

 

Hopefully people in the thick of it cam find this thread and know there's hope for severe akathisia ❤️

[[Ra...]]

On 02/03/2024 at 08:51, [[B...] said:

@[Re...] thank you for coming back and posting this. I’m stuck on the drug still and have had horrific akathsia and terror. I don’t even know how to begin tapering after a failed updose. Your story gives me hope so thank you for coming back to update. I wish you so much healing going forward 🌷

@[Bu...] Does terror or akathisia, are different??? 

Can akathisia happen without terror? 

I think terror is hall mark of akathisia?

[[PE...]]

26 minutes ago, [[R...] said:

@[Bu...] Does terror or akathisia, are different??? 

Can akathisia happen without terror? 

I think terror is hall mark of akathisia?

No pacing is @[Ra...]. Terror is a symptom by it self.

Terror and being afraid is awful hope it mellows out for you.

@[re...] omg many Rebecca here! 

@[Re...] nice to hear your pacing is almoust gone. Akathisia was my worst symptom and almoust put an end to me. I still have weird dreams of me walking in circles.. 

[[Ra...]]

34 minutes ago, [[n...] said:

No pacing is @[Ra...]. Terror is a symptom by it self.

Terror and being afraid is awful hope it mellows out for you.

@[re...] omg many Rebecca here! 

@[Re...] nice to hear your pacing is almoust gone. Akathisia was my worst symptom and almoust put an end to me. I still have weird dreams of me walking in circles.. 

@[ne...] I have extreme terror, but Not pacing, i am totally bed bound Now. I have constant fear of akathisia.

I was the person who always enjoy laughing,doing house chores,cooking, baking, selfcare etc

Yes there are Many Rebecca ,sometime i am aslo confuse, once i tag myself instead of rebecca29 lol. 

@[ne...] I very glad for your recovery. 

[[PE...]]

34 minutes ago, [[R...] said:

@[ne...] I have extreme terror, but Not pacing, i am totally bed bound Now. I have constant fear of akathisia.

I was the person who always enjoy laughing,doing house chores,cooking, baking, selfcare etc

Yes there are Many Rebecca ,sometime i am aslo confuse, once i tag myself instead of rebecca29 lol. 

@[ne...] I very glad for your recovery. 

Fear as you say is a symptom by it self. Sorry to hear you are suffering..

[[PE...]]

There's a good word for it @[Ra...]. Primal fear.

Sorry for the off topic @[Re...]

 

[[Ra...]]

Just now, [[n...] said:

There's a good word for it @[Ra...]. Primal fear.

Sorry for the off topic @[Re...]

@[ne...] yes definitely primal fear would be best description. 

i think with akathisia, we develop ptsd.