spence: 3.5 years of withdrawal hell. Does it get better? Need help

[Shep]

6 hours ago, spence said:

Alcohol even the slightest sip gives me awful brain fog and shuts down my personality.

 

How often are you drinking? Alcohol is one of the worst things you can consume during psychiatric drug withdrawal and recovery. 

[spence]

@ShepI don’t drink. I’m just recalling the one time I tried. 

[Giovanni]

Quote

Even if I stare at a screen too long the blue light will stimulate me so that I can’t sleep. 

 

Both neuro-feedback and staring at a computer screen too long seems to affect your sleep. 

 

For those categorized as bipolar, dark therapy has been shown to be effective in improving circadian rhythms, which influences sleep and other biological processes.

 

https://psycheducation.org/blog/dark-therapy/

 

Perhaps you can buy blue-light blocking glasses (~$15 on Amazon) for when you are using a screen.

[Altostrata]

16 minutes ago, Giovanni said:

Perhaps you can buy blue-light blocking glasses (~$15 on Amazon) for when you are using a screen.

 

I would not assume that a bipolar diagnosis is applicable, but our members often find withdrawal makes them light-sensitive and they need to either limit computer time or wear tinted glasses indoors. See

 

TV or computer use in evening can disrupt sleep: Bright light signals the brain that it's daytime

 

Increased sensitivity to light, noise, sound, exercise etc

 

Inactivity may make sympathetic nervous system hypersensitive...

 

Light-sensitive? Try blocking out blue light

 

Computer Program Adjusts Blue Light to Time of Day

[spence]

@Giovanni @Altostrata Thank you for this and for your responses. I do have blue light blocking glasses that I wear past 5 pm if looking at screens or going out to big stores like Walmart or the mall. I seem to be light sensitive in general even to a sunny day. Neurofeedback just doesn’t work for me at all. There was one protocol that greatly helped my cognition but at the cost of my sleep. I’ve been to 3 different providers and their protocols they promised would help me have only worsened me. I’m sure NFB is great and life changing for some, however for me my body just does not seem to agree with it at all, for whatever reason. 

[spence]

Today was a bad day. My cognition was just terrible. The dissociation. The memory loss. The dpdr and brain fog. Lifting weights and exercise helps occasionally and makes me a little more clear headed. But much of today, was bad. I can’t rightly process auditory and verbal. I also can’t remember anything. I live in this strange world of inner isolation, feeling trapped in myself, feeling mentally stuck because I can’t build or create new memories. Feeling alone because I can’t turn strangers into friends since I can’t keep up with them and remember details of their lives or our interactions. Feeling alone because I’m unable to receive love, feel loved, feel any kind of joy or pleasure whatsoever, just completely numb and emotionless and robotic. I feel like I’m a walking dead. A piece of flesh with no capacity for humanity. I remember when I was alive, 4 years ago, though I don’t remember what it was like to be alive. To feel. To think clearly. To process information quickly. To have a personality. To love myself and who I was becoming. To feel loved. I don’t remember these things. They’re too far gone in the past now. And my memory is too faded. Then I start regretting ever touching ADs. And this overwhelming sense of regret stabs me. There’s nothing I can do. It feels like I’m stuck like this forever. I wonder how much longer this will continue.

 

Edited October 12, 2022 by ChessieCat
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[spence]

Does anyone have any idea why neurofeedback didn’t work on me? I thought the whole point was that it restabilizes an unstable nervous system. I kept telling them maybe my nervous system is too unstable and they said no because NFB is made to help the unstable system stabilize. So I am just so confused. The one thing I went there for (sleep) they ended up disrupting even more. I’m devastated. In all my 4 years of this never ending hell, my sleep has never been so bad until I began NFB. I am so tired that I can’t even do anything during the day. I am practically bed ridden. I have no interests or hobbies anymore. I have no energy to do anything but lay here and fight this uphill battle. So what do I do? Am I stuck like this forever? Is neurofeedback reversible? Please tell me it is. I see the world Is turning and everyone is carrying on with their lives and loved ones and passions and then there’s me just stuck in the same hell for 4 years. I am in so much inner torment and turmoil. I don’t think I’ve ever been this low.

[Altostrata]

On 10/11/2022 at 7:21 PM, spence said:

There was one protocol that greatly helped my cognition but at the cost of my sleep.

 

What was that?

 

Whatever claims are made for neurofeedback, it's not something we recommend for stabilizing from withdrawal syndrome. It may be you're hypersensitive to whatever stimulation they used.

 

It sounds like you have classic protracted withdrawal. Aside from lifting weights, do you get other exercise, such as walking, swimming, cycling? Something not as strenuous?

[spence]

@Altostrata I just don’t get why they market it for unstable CNS’s and it seems to fix everyone else but not me. Right now I am dealing with the most disrupted and disturbed sleep I’ve ever had in my entire 4 years of suffering and I’m not sure what to do anymore or what my options are at this point. I feel like I got screwed over by medicine and now NFB. Is NFB reversible? I don’t know. I just don’t know how to continue living anymore and I’m at that point of giving up. I walk and do light cardio sometimes. Lately I have been a dead weight and just too tired to do anything. I want to give up. 
 

side note, I just put 2&2 together and realized you’re the founder of this site? Wow! I had read your write up in the psychopharmacology journal and that’s what lead me here. Wow. Thanks for creating this space. 

[Shep]

6 minutes ago, spence said:

I just don’t get why they market it for unstable CNS’s and it seems to fix everyone else but not me.

 

It's not just you, spence. Many members have reported it doesn't help:

 

Neurofeedback, brain mapping, and neurostimulation

 

 

[spence]

@Shep Thank you. Just to have someone correspond with me right now is very calming. I had read that thread and saw mixed results and figured I’d give it a chance. I guess I’m one of the ones who didn’t respond well. The question is, now that I’ve stopped, is it reversible. Will I get my sleep back or is this a new problem I have to battle, in which case I don’t even know where to begin but it would sadden me to have to return to meds after 10 long hard months of being free.  To be clear, the meds never did anything for my brain fog they just helped me sleep 

[Shep]

On 10/13/2022 at 5:51 AM, spence said:

Will I get my sleep back or is this a new problem I have to battle, in which case I don’t even know where to begin

 

I would start here:

 

Acceptance and Hope

[spence]

Thanks @Shep I needed to read that and it came at a good time. 
 

im laying here awake after 2-3 hours of sleep tonight, and 5 last night. I’m ravaged by insomnia and sleep deprivation and the cognitive difficulties that accompany. Yesterday was hard because I was told, yet again (by my own family) that I was playing invalid and this was all in my head. They accuse me of being on pills and drugs and can’t see me and hear me or fathom the idea that this is just how I am naturally. This angers me and makes me feel so alone. I wish I could reach them and make them understand and walk in my shoes but I can’t. The fact that none of them understand or care to understand, makes this infinitely worse. 
 

i realized that I live in a perpetual state of trauma. Chronic illness does that. During the day I fight the war of dpdr, memory loss, loss of sense of self and dreams and goals (I have no goals or passions anymore my own goal is to survive). I’ve given up trying to explain my suffering to people so I fight the war of feeling isolated and alone. I fight a war just to make myself food and communicate myself. I don’t remember my communications. I don’t even remember the posts I make. I used to be a writer. A poet. Now, I don’t even know who I am. I fight a war just to remember things. People. Conversations. I lose every time. I fight a war just to not have thoughts to end things. I lose that too. I fight a war just to survive and I can’t even manage that. And at night, I fight the war of insomnia. Waking up every couple hours and not being able to return to sleep. Sometimes I get so upset that I just inhale a bunch of sleep aids. I just don’t know what else to do. Sometimes I hope I just take too much and it releases me from this hell. I am so devastated over this and the longer my suffering persists the more traumatic it is for me. Imagine going to sleep knowing the nighttime war ahead. Knowing night and sleep is not a restful thing but a battle that’s out to destroy your moods, cognition, shred apart any sense of hope and joy and suck the life and humanity out of you. Imagine laying down to that kind of trauma. I am constantly on edge and I feel unsafe in my own body. Like it is the threat, the perpetrator, my arch enemy come to make my life a living hell. And I can’t do anything about it but sit here in this prison. I’m hardly a soldier anymore. This 24/7 war gives me no relief and has turned me into a prisoner of war. I had a future going for me. Now I just sit in this hell, this prison, angry, depressed, traumatized, hopeless. I struggle to not have thoughts to end my life. The desire becomes more and more real each day. I have accepted this suffering many times. Then I fall back into anger. I can’t live life the way I used to. I can’t sleep, so I can’t visit friends. I can’t travel. I can’t go to the beach house. I can’t pursue my music career which requires hotels and early mornings. I can’t do anything early morning. I can’t hold a job. Can’t go to school. The worst part is I can’t explain this to anyone. My SO wants kids. This has been a dream of mine as long as I can remember. But how? I’m watching my life flash before my eyes- all my hopes and dreams and chance of normalcy utterly crumble before me - and I’m swallowed up in my suffering. I feel I have nothing to live for anymore. How is anyone supposed to continue on in my state… I am tired of fighting these wars… I have 0 ability to feel comforted, to feel relief, to feel joy… life has no meaning… the mental swings, the lack of sleep, the dpdr and brain fog, are all just exhausting and draining and there is no rest… I just don’t want to be here anymore. I just can’t keep doing this. At what point do you say enough is enough, and either end things, or get on sleep meds. 

[spence]

Im using this thread to document my journey. Not necessarily looking for replies but I welcome them anyway. I want to look back on this when I am healed and free and remember what I went through to get to where I will be. In surveying my past I recall onset of severe anxiety, intense DPDR and brain fog following a traumatic event, or 2 at the start of 2019. I didn't know what was going on. I thought it was the probiotics so I stopped them but the DPDR and anxiety continued. It persisted for months and then my doctor prescribed me Wellbutrin in the summer which I tried for a week but it did nothing but give me chest pressure and sleep issues. Then in the Fall/winter I tried it again because the DPDR persisted and this time it caused a strange reaction of complete insomnia and extreme physical hunger unlike anything I"d ever experienced before. I would eat, but could not get full. Like my satiety receptors were off. It frightened me as I didn't know what was happening to me. I recall eating a huge chicken (not just a breast or leg but like the whole thing) yet I could not get full. I was terrified. I would get woken up at night from the hunger but no amount of eating would subdue the empty gnawing at my throat. This was pretty much my 2019. Finally beginning of 2020 the doctor put me on Zoloft and all those issues went away. Hunger subsided, sleep came back, mood was brighter. But the DPDR and brain fog remained and continued through my antidepressant usage on/off for the next 2 years till 2021. Here I am now in Fall 2022, with no change. DPDR, brain fog still here. So I am wondering or rather recalling now, that my DPDR was not brought on by ADs, but by 2 traumatic events that shook my world. It persisted for months and months and now I wonder if the ADs had nothing to do with it, but perhaps made it more permanent. I don't know. It's hard to determine what exacerbated DPDR when I was already so deep in that state. Anyway does anyone have any thoughts on this,  is the DPDR from trauma and if so why has it not resolved after these many years. Thank you. 

[Altostrata]

We cannot tell you what was going on before you took psychiatric drugs. Were you drinking at the time?

[spence]

@Altostrata No I was not drinking. I had underwent some severe physical and mental stresses and the dpdr showed up in full swing right after and never let up since. 

[Shep]

11 hours ago, spence said:

@Altostrata No I was not drinking. I had underwent some severe physical and mental stresses and the dpdr showed up in full swing right after and never let up since. 

 

Once you're recovered from psychiatric drug withdrawal, you may want to seek out a trauma informed therapist (one who can't prescribe drugs) to deal with the pre-existing traumas and stressors. 

 

 

[spence]

Thanks @Shep. I've worked over the years with various therapists but obviously it's super hard to make progress when its hard to connect to myself. I'm always forcing myself to undergo some type of counseling, because even though I can't connect or really grasp the concepts I learn, it helps to keep me accountable to mental health and recovery. I've recently made an incredible discovery as to the *potential* cause (or at least one of them) to my symptoms - a break through in all of these 4 years - which I'm going to share in a separate post. Since undergoing treatment for it, I've seen more improvements (although slight) in just 2 weeks than all of these years combined. I've been progressively getting worse over the years, not better, and this may be the reason why, so Im eager and excited to share to update on my progress and possibly encourage others in this area.  

[spence]

Head Trauma, Misaligned Atlas (C1 vertebra) & Brain fog/DPDR/Insomnia

 

I'm not sure if this is the right place for this post, but it deals with symptoms and self care so I thought it would fit. (Mods, feel free to move it where you feel appropriate). Those who have followed my story know the hell I've been walking through for the last 4 years. I've never been 100% convinced that all my symptoms trace back to psych meds, because there's just too many variables in my story. Recently, I've made a breakthrough discovery and found yet another variable that I want to share to update my progress and also in hopes it could help someone here. I'm not saying it's the root-cause but it could be a big contributing factor.

 

Recently I had X rays done of my neck which showed my military/whiplash neck (from my accident with head trauma/concussion/LOC 6 years ago), as well as my atlas/c1 vertebra out of alignment. C1 vertebra is the one most responsible for neurological functions as it's at the brain stem, and any slight misalignment can pinch nerves, block blood flow to the brain and block spinal fluid drainage - all of which causes neurological dysfunction, brain fog, dpdr, insomnia, etc. - what I've been dealing with. The doctor wasn't surprised when I shared with him my symptoms, which was relieving for me, to not have someone look at me like I had 3 heads! I was also having other issues like balance and numbness in my limbs, at times. 

 

Since undergoing spinal corrections, I've seen more improvements in these last 2 weeks than all my years combined. Bearing in mind, they are so slight, but even slight is better than how I've been degrading over the years. I've noticed so far, my ability to comprehend and process words has improved. I can understand sentences as a whole, whereas before my brain was so slow I could only grasp word by word. I can communicate and articulate myself better, even engaging in discussion and debate (thinking faster), which was previously off the table for me because I couldn't string 2 words together. I feel elements of my personality are *starting* to come back (expressiveness, humor, ability to engage/respond with wit, etc). I can rotate my head with a much greater range of motion than prior without the stiffness and tension I used to have. I can drink cold water from the fridge, whereas before I was completely intolerant to the cold and could only drink room temp water. I also think my moods are better, too. I notice less anxiety and more emotional stability. I have not seen improvements in memory or sleep. But, my libido seems to have increased, which is nice. My before and after X rays show my body is responding to these treatments which is also nice. My whiplash neck is gone. * I was told recoveries take time, months, because nerves need to heal, ligaments need to strengthen, etc.. Everyone is different and I'm not going to slap a timeline onto me because I don't want to build expectation and become disappointed. I'm taking it a day at a time, celebrating the improvements as they come.

 

*Now please note, I'm not saying this is a miracle-cure all, or putting all my eggs in one basket, but I am reporting the changes I've been noticing in the last couple weeks. And when one has been suffering - any little improvement is noticed and counted as a win. I'm also not saying this discovery is the sole cause to my problems, but it is SO relieving to have identified a problem known to cause my symptoms, and be on the road to recovery. If nothing else comes out of this, at the very least, I'll have uncovered one more stone, covered one more base, and I'll be thankful for that as I pursue healing. In the mean time I will take it easy on myself, eat healthy, work out without pushing too hard, practice postural discipline, and try my best to get some sleep.

 

So that said, I don't want to throw out solutions for you or try to fix anyone, but if you've suffered past head trauma, let me at least encourage you to have your neck x-rayed and your atlas vertebra checked. This could be lifesaving for someone. Thank you for reading this. I'll keep you posted on my progress as it comes.  

 

Edited November 3, 2022 by ChessieCat
added topic title before merging with intro topic

[spence]

Hi @Shep, I'm unable to edit my previous entry, but I wanted to share the link to my new post which has some of my recent updates. Also sharing in here to keep tabs on my progress/recovery journey, and in case anyone else is interested. 

 

[spence]

I should also add (can’t find where to edit the OP), that my brain fog has improved by maybe 5 or 10%. I liken it to being underwater. I’m not suffocating at the bottom of the ocean floor anymore. My brain, my cognition doesn’t feel buried in a thick fog. It’s still very much there but it feels like I’ve ascended a bit from the bottom of the ocean like I’m closer to the surface. Dpdr and dissociation has not changed. 

[Shep]

Very glad you found a root cause of your pain, Spence. It's good to get checked out, as everything is not always withdrawal. 

 

Please drop in and let us know how you're doing as you continue to recover. 

[spence]

Well it’s been about a month since starting my neck healing journey. In addition to the improvements listed above, I noticed my food and vitamin allergies/sensitivities went away. I can drink coffee now and have vitamin D with 0 adverse reactions, and even drink alcohol and have a normal response (before I would just get the dreaded brain fogged, anxious and sleepy, now I can actually feel relaxed and have fun, like how alcohol used to affect me.) 

 

I was seeing remarkable improvements. Then, a couple nights ago I couldn’t sleep from my covid long haul cough which was keeping me up, so I took cough syrup and a couple sips of wine. Oops. The next night I stupidly took a trazadone because I couldn’t sleep. Double oops. They’re now in the toilet. I’ve been in intense dpdr and brain fog ever since; severe depression and all my food allergies are back and basic vitamins send me spiraling again. It seems as if I’ve erased my entire month’s progress in 1-2 nights. Big mad. 
 

I’m hoping this is just my body’s tantrum this week and that it’ll clear up. See what tantrum it wants to throw next week. I’m getting sick of living in this skin prison, this miserable body that has some kind of vendetta against me. My own body is my enemy. : ( sigh. It was a nice month break. Back to my hell. 

[Elaine5]

Hi Spence, just writing some friendly support to you. Currently struggling with severe insomnia and emotional anesthesia. Wishing you well and lots of healing. 

[spence]

As a follow up to my previous post, my C1 atlas had reverted back, causing my symptoms to flare up again. I’m learning that when I become symptomatic it’s a sign my C1 is shifted out of place. Once my Dr did the procedure and put it back in place, my symptoms dissolved. 
 

@ElaineBenes5 Thank you for writing to me and commenting. Withdrawal is so hard and I’m sorry you’re dealing with these things. I think and hope it’ll get better soon. I’m not sure if 100% of my symptoms are my neck or some from neck some from withdrawal. Hard to say. Time will tell. We have to keep fighting through it. Don’t be a stranger. Reach out anytime. Sending you lots of love and support too. 

[spence]

I’m on the edge of a nervous breakdown. It brings me so much comfort that I can come here and share myself with no fear of judgment. I have not slept in days and I have no memory anymore so forgive me if this is repetitive. My body is so ravaged with exhaustion and my days are all a blur. I don’t even know if what I’m writing make sense. My mood right now is tanked. Usually it’s good. But the lack of sleep has taken its toll. I just can’t do this anymore. I can’t run on no sleep. And the only sleep aids that bring miracle relief, leave me extremely brain fogged and dpdr’d the next day. I think this is all I’ll write for now. I think I’m beyond help at this point. 

[spence]

I forget what it’s like to live a normal life. To be able to think normal thoughts or think normally at all. To have the luxury of inventing stories, or film ideas, or thinking about anything other than suffering. I live in a constant state of trauma because this suffering is unlike anything I’ve ever experienced before. It dominates my mind, consumes my entire being. I do not have the luxury of writing stories, because 100% of my mental energy is spent fighting the war to think and survive and care for myself. I’ve grown so accustomed to my darkness, I just wonder what normal life is like. To be able to feel again and connect. To associate, not dissociate. I can’t imagine doing those things. It feels like I’m going insane. Everyone talks to themselves. Its normal. I talk to myself in whispers. I realized I hadn’t driven with my car window down in years and that’s something I used to do all the time. My world is so dark, I envy those who live in the light. I wonder if I’ll ever get to be them. 

[Catina7]

I am so sorry that you are suffering so much.  My heart hurts for you.  I hit a brick wall during my own withdrawal and had the worst anxiety, panic, and sleeplessness that I could ever imagine.  It felt like something out of a horror movie.  Every time I would try to lie down in bed it felt like I had electricity pumping through my body.  It was terrifying.  I was completely unable to sleep other than a few winks here and there.  Once, I didn't sleep for three straight days in a row, and I felt like I was hanging on by the thinnest thread imaginable.  I truly questioned whether I could go on or not.  My anxiety would increase whenever nighttime was approaching, and I was terrified about having to about face another dark night alone with this terror running through my body.  After about three months it started to get better.  I know I can't fully understand what you're going through, but hopefully sharing some of my own horror story will help you feel not so alone.  Have you tried EFT (Emotional Freedom Technique)?  I found that it really helped me, and I still use it when I am having a hard time with my anxiety or insomnia.  Also, it's supposed to be very good for people who have experienced trauma.  Your brain is fighting to recover.  For myself, I know the more I fight against my symptoms the harder it is.  If we come to fully accept ourselves and our situation, then our brains can heal faster.  I came up with all sorts of mantras that I typed up and read every day when I was feeling my worst.  Don't ever lose HOPE because tomorrow might just bring a better day.

[spence]

Well lately it has been a confusing time for me, as my body showed signs of healing then took a complete nose dive for no reason. This is the general trajectory I’ve been on. Trying to heal and my body is just resistant. One step forward two steps back, until I’m in this deep dark pit. I’ll have a breakthrough for a short time, then descend deeper. I don’t get it. But I’ve been suffering too much lately. My sleep has worsened unexpectedly. I was diagnosed with cptsd (finally) and we are working on EMDR. But honestly it’s making my symptoms worse. I can’t fathom the idea of having to live the rest of my life in this prison. The thought of ending things becomes more appealing every day. Im not even depressed to say this. This is coming from a place of logic. I don’t want to live like this anymore and my body shows no signs of ever getting better. To me this is a terminal illness and euthanasia should be an option. Im tired. I don’t want to do this anymore. A lot of my trauma comes from being in a state of perpetual distress caused by dpdr. 4 years of it. How can I begin to heal from trauma when it keeps showing up on my door step?  Im just so tired of this. If I had sleep, maybe I could fight better. But I don’t even have that. 
 

Thank you @Catina7  I appreciate your words. I’m doing EMDR. Maybe I’ll write more when I have the mental energy. Thank you. 

[spence]

Is it worth going back on anti depressants? They helped my sleep. It’s just that I’m a year out and I’m worse than I’ve ever been.but I know it was the neurofeedback. I try so hard to fix and I end up messing myself up even more. I truly believe had I not taken ADs maybe I would not be suffering this long but I don’t know. I am plagued with regret and self loathing and shame. Daily. 

 

Or should I stick out this EMDR therapy and see what happens the next few months? If I can fix my sleep I don’t think I’d be having these suicidal ideations. I don’t want to go back. But I’m desperate for sleep. I’m living half alive because I’m not sleeping. I can handle the brain fog and dpdr. But sleeplessness I cannot handle. 

[Shep]

2 hours ago, spence said:

I was diagnosed with cptsd (finally) and we are working on EMDR. But honestly it’s making my symptoms worse.

 

You may want to stop the EMDR. Working on trauma is usually best done after you've healed from withdrawal. Right now, you're going through a traumatic experience dealing with withdrawal, which comes with neuro-emotions that make it difficult to process every day emotions, much less intense emotions from trauma work. If you broke your leg, you'd wait until it heals before walking and running on it again. Right now, your nervous system is temporarily broken. Best to give it time and space to heal. 

 

Maybe stop the EMDR and see if you feel better. 

[spence]

Thanks @Shep I appreciate your ear and guidance. I spoke out of desperation not fact. I did more EMDR work and had the opposite reaction. It’s just hard to say what causes/correlates to what because nothing is ever consistent. All I know is, I need to pursue my healing. My trauma has been suffocating me and contributing to my dissociation/ dpdr, and I can’t be healthy, live healthy or have healthy relationships with others and myself because of it. I have to pursue my healing because there is hope in that. If I do nothing I will stagnate. I have to make change. Frankly I think that should be celebrated not discouraged and I’m surprised to encounter resistance. I understand all of what you’re saying but my history is just too complex to receive a one size fits all prescription plan and I need to pursue treatments, not sit and stagnate. I’m not even sure if any of my symptoms are from withdrawal at this point. I’m purely speculating but I have no evidence because they all overlap with other diagnoses. So I have to keep fighting for myself. 
 

i would also like to close my account and delete all my content. How can I do that? I can’t even find a way to delete this thread. Something doesn’t seem right. 

[Shep]

40 minutes ago, spence said:

Frankly I think that should be celebrated not discouraged and I’m surprised to encounter resistance.

 

I think there's some miscommunication here, spence. My advice was based on your report that EDMR was not only making you feel worse, but suicidal. 

 

On 12/13/2022 at 4:16 AM, spence said:

I was diagnosed with cptsd (finally) and we are working on EMDR. But honestly it’s making my symptoms worse. I can’t fathom the idea of having to live the rest of my life in this prison. The thought of ending things becomes more appealing every day.

 

If this is not the case and you feel that it's helping, than by all means, you should continue on with it. 

 

 

43 minutes ago, spence said:

i would also like to close my account and delete all my content. How can I do that? I can’t even find a way to delete this thread. Something doesn’t seem right. 

 

Please see:

 

If you wish to close or delete your account

[spence]

Hey @ShepIm so sorry about that. Yes I did misunderstand you entirely. My bad! Thanks for clarifying. I do appreciate your help. I know it’s so hard on these sites because people come with so many symptoms and experiences and we just want to help. Definitely, if I notice a pattern between EMDR and suicidal ideation, I’ll have to reevaluate and find another avenue for trauma healing. Thank you. 

[Shep]

No worries, @spence Glad we got it sorted out. 

[spence]

So my doctors are now saying that I am suffering with TBI (Traumatic Brain Injury) and possible Post Concussion Syndrome. They proposed these diagnoses based on a series of tests performed on me (vision, nerve, balance) which I failed. I do have an extensive history of head and neck trauma, one instance causing loss of consciousness but it did not go down as concussion - to which my Dr says, "of course they'd do that - but it definitely was." The symptoms of TBI overlap with the symptoms of AD Withdrawal Syndrome. Particularly (and what I suffer with the most): brain fog, DPDR, mood changes, anhedonia, insomnia, light/sound sensitivity, ringing in ears, loss of sense of smell/taste, cognitive/concentration/memory issues, poor word recall, mental confusion, inability to create new memories/recognize the familiar... 

 

The symptoms that do not overlap, which I also have, are the nerve, vision, and balance issues. My head is literally tilted to the right due to my neck instability. I can feel it, because it's like driving a car with the steering wheel misaligned. Also when laying down, what I'd perceive to be straight, my body is actually veering to the right about 7". I had wondered why every time the Doctors had me lay down, they would shift me to the left and straighten me out. It felt so weird because I'd always think to myself - "why are you moving my legs to the left." When all along, I was not straight and misaligned to the right. 

 

So I'm wondering now how much of what I'm suffering with is protracted withdrawal and how much is TBI/post concussion syndrome. I think the presence of vision/nerve/balance issues definitely point to some kind of head/neck trauma, but is it specifically TBI/PCS (which would require extensive rehab $$$), or is it just common neck instability issues that can be fixed by a good, board-certified chiropractor. I guess there's just no way to tell. I would just have to go through the treatments for TBI and see if my symptoms go away with time. The crazy thing is, my therapist/counselor specializes in TBI and works with TBI patients. That's not the reason I chose her; it just happened that way. I didn't even know what TBI was. But now I'm thinking, it's not a coincidence, and maybe it happened for a reason. I'm hoping these are all positive steps in the right direction towards my healing.