Neurofeedback...Looking for feedback

[Druidcat]

Okay, so I need some reassurance from any of you who have had neurofeedback. I have had four sessions so far.
The first two were kind of non-eventful, although I had nasty headaches afterwards. Maybe I should mention also that I have had a tbi.
The next one, I became very anxious all week. I had a panic attack at work.
I told the t and she told me to keep going. She did turn my frequency down though, she said.
Well last week..I had a bad flashback. So bad that even my husband was upset by it. Then we tried to go to the theatre and I barely made it
through the movie because I felt like I was fighting panic all through it.
I am scheduled for another session tonight. And I'm shaking in my shoes. I get that people say sometimes it gets worse before it gets better, but after this week, I'm saying to myself, how much worse are we talking? I don't want to experience anything worse than this past week was.
I'm almost on the verge of canceling my appointment. I'm just not sure about this.
I guess I'm hoping to find people that have had neuro, maybe had a similar experience but it got better? not sure.
Thank you ahead of time for any insight.

 

[gemberie]

Hi,

I’d like to share my experience of 9 months of neurofeedback.

A little background on me: For about 30 years I have had low-functioning PTSD and severe Body Dysmorphic Disorder, both due to childhood sexual abuse. I also had severe “body memories” or “sensory flashbacks” that I had been having since 2004. The body memories were so bad they impaired my ability to work and my ability to enjoy sex, especially with someone I loved and trusted. For me, PTSD and BDD are symptoms of the same disorder. They are completely entangled in one another in that, the hatred I felt for my body (BDD) and the “body memories” (PTSD) were entangled and continued a vicious cycle of “I hate the way my body looks and I hate the way it feels because it reminds me of how I felt when the sexual abuse was happening.”

I started neurofeedback in April of 2018 and finished in January of 2019. When I first started, I was a little discouraged when my neurofeedback therapist told me that it works on 2 out of 3 people. I desperately needed to be one of the 2 people! During May 2018 when I was having 2 sessions per week things got really bad, way worse. I was extremely anxious and depressed. I told my Neurofeedback therapist and she changed the settings which helped a lot. I think it was just working a little too well.

Here’s why:

The thing about neurofeedback for PTSD is that it helps the feelings come up so they can be processed. It doesn’t magically change things without some work on my part. I had to process my memories by feeling the feelings that I didn’t have the ability to feel when I was a child, or throughout my life. During my course of neurofeedback, I was finally able to feel the feelings that had been locked in my body for 30 years, contributing to my flashbacks and self-hatred. It is a painful experience, but I started to notice less symptoms as time went on.

The most impressive and miraculous part of neurofeedback for me was how it treated my Body Dysmorphic Disorder. I have had BDD since I was about 12, so for almost 30 years I suffered from it in one way or another. It's a horribly debilitating disorder and it's extremely difficult to treat. I'm happy to say that after 9 months I no longer have any of the symptoms of BDD. I attribute it 100% to neurofeedback and more specifically to how neurofeedback helped me to feel all the emotions that kept me in a state of hating my body and hating the way I looked. Not only did it help me heal from BDD but I am actually starting to love myself and accept the way I look. It has been truly mind-blowing. I no longer have suicidal thoughts and my depression is much better. Like I said, it helps you feel the emotions behind the memories so I am still doing a lot of processing.

I still experience “body memories” but they are much less than they had been. I think that's the most important key for treating PTSD with neurofeedback is having something or someone to help you process the memories and feelings that come up. I have been using books on PTSD and right now I’m using the Inner Child Workbook by Catheryn Taylor. Processing memories and the emotions behind them is a lot of intensive work and it is taking time but I am getting better by leaps and bounds. I have been doing a lot of work on “triggers” and the pain, humiliation, sadness, shame and the feeling of smallness, nothingness and helplessness. It hurts to feel those feelings but for me, it is the only way out of this hellhole I’ve been in.

I highly recommend sticking with neurofeedback. I think for people with PTSD the course of NF is longer. Probably about 40-60 sessions. I think I ended up with about 50 sessions because I had tapered down to one per week. I’m looking into getting a master’s degree in psychology, becoming a neurofeedback specialist and studying how to further help people with PTSD. I want to specifically study how to incorporate different ways of complementing neurofeedback with EMDR or other memory processing therapies that are best suited to PTSD.

Druidcat, I am interested in knowing how it works for someone with both PTSD and TBI as well. If the NF is too much for you right now, it's great that you're keeping your therapist informed. She should be able to change the placements and settings so it is less intense. It may take a few adjustments. I wish you the best on your journey and would love to hear how it works out for you.

 

[grit]

Can you give an example of an emotion and what steps you took in processing? For example shame?

I find that shame in PTSD is not so much about what happened to me as a child (though there could be some) but also the body or the mind or both trying not to come out of the past/posttraumatic and be in the reality and then have to live with ooh wow! I was really crazy person! What did I do feeling that can come after coming out of the insanity called Ptsd.

For me I feel shame as twitching and gasping like ooh arghhhhhhhhh I should not say that or I should not talk or something like that after the facts! And beat myself for while until it downs on me that I am alone and beating myself and no one is here to actually say hey YOU should not say that! Then I keep that feeling in the body and feel it in the bones and I find it has been working for while and the veil is being lifted.

This is my take.

 

[gemberie]

I process feelings by remembering a trigger from my daily life when I am alone and safe. Then asking myself, "How did it feel when this happened? When was a time I have felt this feeling before?" The answer usually comes with me remembering how it felt to be held down and forced to feel humiliated, worthless and hurt. Then I grieve and cry as I feel those emotions, slowly letting them go.

To me, shame is a cross between humiliation and worthlessness. My feelings of humiliation are how it felt to be forced to feel private sexual feelings before I was ready and with someone I would never have wanted to have those feelings with. Taking something that's private and being forced to share it. For me, shame is the feeling of worthlessness made public. I guess the main times I really feel shameful is when I am around other people. I have Social Anxiety Disorder so shame is such a part of how i've dealt with the world since I was a child, I don't even notice it anymore. But when it is triggered, I feel it.

In my process it's not enough to feel the emotions and sensations, and grieve them out, but to slowly start to replace them with self-compassion and love for the little girl it happened to. That little girl is still within me, so I can love her. And if I can love her, loving myself is not far behind.

 

[grit]

@gemberie
Thank you for taking the time to share that is exactly how I do it too. I acknowledge the feeling in my body using language regardless of how negative such as hate, revenge or even vindictiveness. Because I felt them as a child and swallowed them in order to survive.
I find my recovery is such as yours in that I need to consciously acknowledge the good and bad and love both. Something I should have learned as a child in a long developmental process.
I feel resisting certain feelings so I am not killed got automated as ptsd. No wonder!

 

[katz]

I wanted to also thank you, Gemberie. I have also been using my feelings of shame and sadness to help myself get these thoughts out of me. Like you, I often remember, realize and accept. Then I can grieve. After enough tears, the so called pain, seems to decrease.

I go back and grieve at each place that I know something happened, and because of this grieving, it is giving myself the much needed love and acceptance I need so much.

 

[gemberie]

I'm glad it was helpful to you both. ?

The pain does dissipate little by little. It seems to take forever but I can look back and see how much less pain I'm in now than when I started the grieving process.

I've also started to get better at rebuilding a sense of fulfillment and identity through listening to certain guided meditations on YouTube. Some of them are really good and can help me feel a sense of worthiness that I couldn't feel before I started grieving. It's like I had to wipe away a lot of the pain and sadness caused by the trauma before I could start to fill myself back up with the goodness that could have been instilled in me as a child if my environment had been healthy.

Right now I'm listening to one by Rebekah Boruki. The meditation is about that just being alive and breathing is proof that you are loved, enough and here with purpose. Something like that lol. It's called "Meditation for Gratitude When Things are Sh*tty". I struggle with feelings of worth and being enough so it's making me feel better bit by bit.

 

[susannahsays]

Wow, that doesn't sound like a very good experience so far. When I did neurofeedback, the therapist continuously made adjustments until it did not have any side effects. We also found that it worked best for me lying down on the couch with my eyes closed rather than sitting in a chair looking at the screen. For some reason, doing that triggered flashbacks. Also, she got supervision on our case from Sebern Fisher, who is an authority on neurofeedback.

The therapist should not be telling you to just "push through," imo. Neurofeedback IS NOT supposed to be hard. It's not like EMDR, where you should expect to drag up painful stuff. The whole point is that it helps your brain better regulate without doing all that. However, just like EMDR and any other treatment, it's not for everybody. I'm not sure if it's suitable for people with TBI - you might see if there's any research on that. If you don't have access to academic journals, let me know, and I'll take a look (I am a student, so I have free access to pretty much everything).