My symptoms feel too severe to be ptsd

[MamaHopeful]

I recently read an account of what it feels like to go through withdrawal from benzo addiction and that is the closest thing I have found that explains how I feel physically and emotionally (even though I've never taken benzos - I'm just saying). My doctors and therapists keep reassuring me that my symptoms are in line with PTSD, but I have never met anyone else who has it so severe and the symptoms are not mentioned in the DSM-5 criteria.

I feel like I am a lost cause sometimes, and that my nervous system is just completely and utterly RAW.

I wake up every morning with my legs kicking and me screaming, "HELP ME!" while having constant adrenaline surges and panic attacks. Nothing looks familiar, even my husband and children. I cannot find a therapist who I think will help me, because my brain is hijacked and in a constant state of terror and rumination/worry/intrusive memories. Constant.

Even things that aren't scary become tangled in my head and then become terrifying to think about.

Is there a book or something that can help validate what I am experiencing? Some literature about PTSD and the effects on the nervous system? I truly feel like I'm withdrawing from heroine. Some mornings just the air blowing on my skin from the fan feels like it's enough to send me into a major panic attack, and the dark thoughts and terrifying images are too much.

I just need some validation that I am not alone. It would mean the world to me.

I cannot seem to accept this diagnosis because this feels WAY more severe than what I've seen described so far.

 

[Justmehere]

What you describe is fitting for a PTSD diagnosis. Yes, PTSD can be that difficult. This is why some veterans and others with PTSD end up homeless and/or on disability. It can be that difficult to endure and function.

I’ve had symptoms fairly similar to yours early in recovery. I hated having air conditioning blow on me when I was in a high state of fight or flight. It stoked up the panic even more. In fight or flight fueled hyperdrive, my brain notices everything. Every. Little. Thing. And nothing seeming real or familiar - that’s called derealization. It’s one of many forms of dissociation.

A few books:
The Body Bears the Burden, by Robert Scarer
This book especially gets into the link between pain and high sympathetic nervous system arousal (which is responsible for panic, and fight or flight symptoms) and physical pain and sensitivity to sensory input

The Body Keeps the Score, by Bessel van der Kolk
Another solid book with more info on how trauma can affect nervous system wind up.

Acceptance and Mindfulness Workbook for Anxiety
Might help you begin to challenge some of the distorted thoughts (which we all have to some degree) around getting treatment.

Anxiety in particular has a habit of telling us this is the worst thing ever, RUN. I used to panic about the panic itself. It feels awful and horrible. In those moments, try grounding. I especially recommend safe strong sensations to ground. Holding ice, chewing gum, jumping on a trampoline or the ground, etc. You can also google or use the search bar on this forum for “grounding techniques.” These skills will not cure your anxiety, but it might begin to help soothe your nervous system a bit. Slow it down. These techniques also tend to work more over time. It’s what most solid trauma therapists would work on with you early in treatment. Until you can get yourself to see a therapist, and keep seeing them, these skills might help.

You are not a lost cause. There is much reason for hope.

 

[blackemerald1]

Yep...sure sounds like ptsd to me @MamaHopeful and I agree with @Justmehere completely^^^.

I'm really sorry the intensity of your symptoms are so bad right now. I have found my symptoms will wax and wain. And I become very frustrated and wonder if something else may be wrong. But there isn't. PTSD is the monster.

 

[MamaHopeful]

Thank you.
This means the world to me.
I have convinced myself that I have many horrible and incurable things since this all started.
It's so hard for me to accept that it's PTSD.
Thank you for the books. I will get them ASAP.
There is a trauma program in Austin that offers intensive treatment. I want to join but I'm confused how people with PTSD can get out of the house every single morning to make it to a 3 hour program??? It makes me wonder if what I have is not PTSD. I wake up screaming and horrified and trapped in my worst case thinking and confusion.
I went on a paxil withdrawal forum and they convinced me that's what all of this is because I tried to decrease my dose by .5mg. That is what is really stuck in my brain. That I'm now in a perm. state of withdrawal.
Even though I KNOW I have PTSD due to severe, severe trauma.
This is so hard.
Thank you for being here for me. I exhaust myself.

Yep...sure sounds like ptsd to me @MamaHopeful and I agree with @Ju...

That's how it is for me.
I will be back to myself and then BAM out of nowhere it all slams back into me, and then I'm on Google for hours and hours trying to figure out WHAT IT IS.
Thank you for being here for me. This means the world to feel less alone.

 

[blackemerald1]

that's what all of this is because I tried to decrease my dose by .5mg. That is what is really stuck in my brain. That I'm now in a perm. state of withdrawal.

Well...the thing is they may have been partially correct. I found when using medications for ptsd that even a slight alteration in medications could possibly tip me into a almost endless cycle of worsening symptoms. But after coming off all medications and several months later...and repeated consultations with psydoc, general practitioner etc., it wasn't withdrawals anymore it was ptsd.

here is a trauma program in Austin that offers intensive treatment. I want to join but I'm confused how people with PTSD can get out of the house every single morning to make it to a 3 hour program???

This takes a huge personal commitment to do. I can see how you may be confused. BUT, when there is the possibility of managing ptsd better through treatment the alternative (as in not going) isn't a possibility.

Can you organise your life to do it? I think it could be a way forward for you but you would have to be willing and ready to put this treatment first before almost everything else. Can you get someone to help you get there every morning? If you want to do it and you can do it...I'd strongly encourage you to take it on. :hug:

 

[Fadeaway]

I hope that other peoples experiances here can be validating for you.

There are times when when my skin just hurts to bad to touch anything because I am so overwhelmed and hypersensitive. I have heard people say panic attacks dont last more than 20 minutes but mine can last for 8 hours. Fear over nothing or non scary things like setting the table can set it off.
I have repeatedly asked my husband to stop askibg what I am afraid of, because sonetimes it is just fear in general with no decernable cause.

You arent alone in this hell of a diagnosis.

 

[hithere]

I recently read an account of what it feels like to go through withdrawal from benzo addiction and...

Yes I've had your symptoms to the extreme where I could not function. You are describing flashbacks and hyper vigilance to name a couple. There are many homeless people due to untreated PTSD unfortunately. All the symptoms you describe are on the "PCL-5" which is a way to keep track of your symptoms week by week during treatment to see if there is improvement. You can download it from the US Department of Veteran's Affairs website under PTSD. In my opinion, you are correct in that there may not be a counselor that can help you, but keep looking and research them out, just because they say they are "trauma" people doesn't mean they really are--or that their style will work with you. I encourage you to keep trying.

 

[EveHarrington]

Hypersensitivity, fried nerves...it goes with the territory.

Are you on any meds that calm your system? Maybe antidepressants aren’t right for you.

 

[Freida]

Yep. That's what ptsd feels like to me.

 

[MamaHopeful]

Thank you SO MUCH for this validation.
I am having PTSD and panic disorder because I experienced my first panic attack during my trauma.
I lived my entire life avoiding panic attacks and avoiding ANY reminders of the trauma and I was able to do it with success - avoid I mean, not face or treat.
Now I am at a time in my life where I am having panic attacks due to medical reasons (hormones, adrenal fatigue, extreme stress, possible side effect from medication management) and flashbacks in my dreams and during the day. These are things that cannot be avoided. I can no longer avoid panic attacks or PTSD flashbacks and symptoms. So here I am. It caught up with me.
My hope is that I will be able to learn skills for the panic attacks and severe anxiety BEFORE diving into the trauma work. Because right now as soon as I experience any PTSD symptoms I freak the hell out and go into a spiral of panic attacks and severe anxiety that lasts days/weeks.
I also need to manage my goals and plan. My goal cannot be - no more panic attacks, no more PTSD. Because with that goal, each time I have one of those symptoms or panic attacks I will want to give up and my brain will say, "This isn't working!!!!"
I am planning on a combination of DBT therapy, paleo diet for blood sugar regulation, mindfulness, and then eventually Cognitive Processing Therapy.
There was a scene in the Incredibles where the Dad is trying to run away and these big gel balls keep landing on him and expanding and causing him to be immobile. That's how my life feels since March. Everything I have worked so hard to avoid is here. All of it is here.
Moment by moment I suppose.
The combo of panic disorder and PTSD is tricky - but here I am.

 

[blackemerald1]

Hi @MamaHopeful - I guess I can offer you some assurance that panic attacks will not kill you. This is of no comfort when you are riding through wave after wave of panic and nothing seems to work or release it's grip. I know and I am sorry.:hug:

I was certain a few times that my heart would give up because I didn't believe it could keep going at the rate that it was for so long. (Many months) at a time. I didn't know what really started it. Possibly it was just being overwhelmed by something but I not fully conscious of what it ever is.

I went to my psydoc and my GP and despite the elevated heart rate and the accompanying symptoms they reminded me to do all my calming techniques and eventually it did work. I felt quite upset at the time that they could not give me something to bring these symptoms back under control...via medication. They did offer to hospitalise me but I declined.

I'm not really sure what broke the rolling panic attack cycle for me. So I cannot help you there. It was a combination of a lot of things I think. It wasn't a medication that I am sure of. But it might be for you.

I know it can and does re-start for me if I allow myself to get in too deep with obligations, work etc. It seems I have to really, really concentrate on keeping to a regime of sorts and there is no instant respite.

I gave up consuming a lot of things. I feel stupid saying any of these things helped. It might have been a complete coincidence I'm not sure. I think I looked at what I was doing to myself and then dissected and either stopped or started doing things. It is a lot of experimentation and so far there does not seem to be a lot of consistency to it.

So if I have any advice it is to experiment with things like diet, exercise, different therapies if they are available.

I hope you feel some relief soon. :hug:

 

[MamaHopeful]

Thank you so so so so much.
Michelle