PNES AWARENESS. What was that?? Did I just have a seizure?
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- Опубліковано 19 вер 2024
- www.transferou... Mental health is so stigmatized that those of us with psychological or learning challenges often feel shame, embarrassed, and some will live on as though there is nothing to address. It is only a problem if you think of it that way. I like to think of the more intrusive and sometimes destructive characteristics of any particular diagnosis as challenges. I must share who I am, I don't hold back some of the most rewarding aspects of who I am. I am grateful for my bipolar because I believe my imagination and artistic skill are born from it. I am grateful for my ADHD because by analytic ability and ability to hyperfocus on problem solving is amplified. I over-disclose according to some. Honestly, I can't see what is so different between sharing my gemini zodiac sign, which is meant to describe my personality, and the fact that I am bipolar, ADHD, have PNES, and then some. It is a part of me.
When we share who we are, and we don't leave out the part that make us especially talented or skilled, we break the stigma. Every time we live in the open we are communicating that we are proud of every part of who we are. Recognize that many of us are stronger than most because we work harder to curtail and retrain ourselves to address specific challenging characteristics. The diagnosis doesn't define us, and it is nothing to be ashamed of. I am proud to be all that I am. I am so happy that I am me. I am blessed with so many talents, strengths and abilities.
thank you so much for your transparency. I too feel alone but watching this gave me comfort. knowing I'm not alone gives me comfort. I will continue to pray for us and those like us as well. and we both have had them in front of our children. God bless you and thank you so much!
thank you for writing. my kids were the foundation for the reason for healing. it took almost a full-time job of recovery to overcome it, and life is so much better than I could have imagined... not easier all the time, but better (and seizure-free ). any way I can help guide you along your journey please let me know. If your goal is recovery then there are answers. there are also was to mitigate or lessen how it's effects...some people aren't ready for the actual recovery, they just want to figure out how to get acclimated to the stage their at. in any case, recovery is possible, whatever answers you're looking for, they're available... just gotta know where to look. I've spent the last 2 years studying/learning the application of "how." I'm doing this to help those with trauma-caused PNES. Whatever I can do to help please let me know. You can ask here or message on FB. :-)
Thank you so much I have a UA-cam channel as well called Step Up 2 Pain...I started mine to hopefully help others with epilepsy... But it wasn't until yesterday I was told by my neurologist that I also have non epileptic seizures... I had what appeared to be a grand mal Monday during my appointment to get my staples removed due to my brain surgery when they removed my tumor that was causing my epileptic seizures...I was scared and felt alone when she said it was non epileptic and I wanted assure myself I didn't bring it on with all my stress and wanted others to know I wasn't faking it...All I hear is "stop stressing!" But it isn't that easy life is stressful I want to get better I just don't know how? And I know therapy is apart of it but I've done it before and don't feel that's the cure. Can you please tell me where do I start?
The answers are within... if you haven't journaled before... start. There are obvious answers to the why - like peoples reactions to those who are having a seizure, and then there are less obvious that become uncovered through journaling your thoughts (your reactive thoughts) to stressful events. Through acceptance, addressing avoidance behaviors, evaluating the people in your life (and how much stress you allow them to bring into your life,) and bringing balance into existence by locating your passions and practicing giving yourself what you need on a daily or weekly basis. We are well practiced at denying ourselves our basic needs: like taking a breath of fresh air when things are getting too overwhelming, giving someone the boot when they are stress magnets, or just taking a day to learn how it feels to be bored (still waters run deep.) The answers are within our lifestyle.
Learning about our personality is also a huge component to self-evaluation. Try a personality test, like 16personalities dot com/free-personality-test. That will help you to see how to best understand your reactions to circumstances, those that are ingrained. There are some reactions that are trauma-based as well. It takes a little more looking into the specifics of that to know how to maneuver and navigate that. There are many books I can recommend, or you can check them out at the library. They are available in audio too.
+Christine Mauriello when taking the personality test, go with your first instincts as far as your answers go. you can always take it again, but try to stick with the first answer that comes to mind.
Thank you so much you have no idea how much you are helping me. Im going to take the test right away. I write in my journal but maybe I'm writing the wrong way I normally just write what happened and not how it made me feel because I don't want to relieve it if that makes any sense. And the books yes I'd love to read. I hope I'm not bothering you. I just really need and want the help. thank you so much again!
this is definitely not a bother. that is exactly why I have created this, my website, and participate in the PNES support for recovery. search for how journaling can lead to self-discovery and you will find loads more... but please feel free to ask anything.
journaling is reflective, which allow us to evaluate to see how we get to where we're at, so we can learn how to make different choices by changing the thinking that goes behind our current decision patterns. why we stay in unhealthy relationships, why we think family had the right to treat us worse than others, why loved ones, in general, may get-out-of-jail (consequence)- free-slips
that got posted prematurely, which is ironic, that was going to the next point, was how we make decisions to do or not do something that we may not feel compatible with our beliefs, standards, or morals. we make a lot of hasty decisions, as a society, and base them on emotions instead of logic. we will not find peace that way.
so my advice, since you asked, is to:
1. get a better understanding of your personality
2. evaluate our inner circle of influence (who we're most vulnerable to), and begin to see who constantly in violation of our spoken or unspoken boundaries.
3. start to become more true to ourselves by evaluating how we make our decisions. who we tend to attempt to benefit and if there is balance.
once you journal that out let me know how you are doing, i can help you to see where to go next. I've been seizure-free for almost a year. with a constant decrease before that... this process can work for anyone who wants it to, and I'm here to help be a guide. thank you for being brave and taking the steps to recovery... it's not may who can take a look in the mirror and see someone who could use for a thinking-system update. although many can see the need when it comes to their phones and other machines... why not our minds.
Just know your words of wisdom are not falling on deaf ears. I'm ready to get my life back. So, I'm ready to do the work. Including treating myself better. Not depending on other people to love me but loving myself and everyone else is a bonus. One day at a time not looking back or too far ahead thinking about the stresses yet to come. I will do better today than yesterday. Thank you so much!
I can relate to you. just diagnosed with pnes, have bipolar and adhd, and quite a stressful job that my dad owns. it's been 8 years to receive this diagnosis. feel free to contact me or comment back please. thank you.
Seizure-free is achieved by changing those things in our lives that cause us the most stress. I love the life-hacks I've learned from Dr Hallowell, ADHD specialist - you can check out his site. I have found others in my last year and a half of seizure-free living. I've shared many in my videos and my website, drivenbyme (.net.) if there is anything you're working with, struggling through and need help with I'm happy to be of help. I offer one-on-one coaching, but it's not easy because it's only as effective as you are able to be. I push you to do what you may already know you need to do/eliminate to have a seizure-free life. No one needs me to become what they can become but support from somewhere is critical. I can hear from your response that you already know one area that needs to be changed. one thing that may help to chase your own dream in finding the job/profession most suited to your personality. if you've never taken a personality test there is a good one at 16personalities (.com) then cross search the results with suitable careers. I hope that helps you a little. If you have more that I can help you with please contact me directly. you can reach me through my website.
Jennifer Grana How are you?
Stay strong sometimes when i see my little sister with seuizeres i feel so bad for her she is just 6 years old so stay strong
Thank you. I'm seizure-free for 2 1/2 year's and I'm now a recovery and restoration coach
Hello Christine, stay strong for your kids take time to learn to live with this condition. Lots of love to you :)
I am so glad you signed up to witness my journey of hope I now get to give others. We don't have you learn to live with this condition. We are able to overcome - that is the purpose of my whole channel is to share the tools I have used and the route I took to my healing. I have not had a single seizure in over 2 years. :-)
My son was diagnose with this after a year of test any advice how to help him hes 23 and has a son its really hard on both of us any advice would really be appreciated thanks and god bless all if you
my name is dimitra l,have pnes,seizures for 12yers now am very depressed my life is not good but am trying is very important steering strong this for the people too be strong
Can i help?
thank you ,now i know im not alone, non spcific epilepsy
the people you think you crazy is very sad
Dimitra Giovis We have lost a purpose, for sure... but crazy? no. We have to look at ourselves through our Fathers eyes... see who we were intended to be. Ask Him to show us the road back. We are living half a life until then, not living to our potential
That sounds like what happened to me I felt strange in my head started on one side. The first episode I had a seizure like you are describing I couldn't move my arms, or legs for a few days and I also had slurred speech for 3-4 days. Admitted in the hospital to make sure I didn't have a stroke due to the droopy on my right side of face. All tests were normal. Neurologist said I was a mystery at the moment, and ordered tests to be done. I did bloodwork, sleep study and EEG which all showed normal. After going to the ER again a few weeks ago I had a different neurologist examine me and he mentioned conversion disorder and psychogenic non epileptic seizures. I had never had these before, and I was scared. I haven't oIfficially been diagnosed yet. I want to figure out how to manage this. I'm fully aware of what's going on everytime.
if you have not already also go onto my website, www.TransferOutPNES.com
I recently started up a new site for those taking serious directions in healing and foundational truths that lead to such healing. I know from experience that to recover it takes an honest view of ones life (I did this with my life) and share with trusted help that I may have made every wrong choice there was - as the results were seizures, and I need help. I am a help to others now who want to progress through this. Check it out - if it looks like something you want and/or need, I'd consider it an honor. I know the process and have the experience, so you won't be alone.
Thank you! I'll check it out.
it all started in march and my life got took from me. I started having seizures and I got told by my neurologist said it was PNES. and I feel like I'm a failer in life.
I can relate to what you're feeling. When i was first diagnosed i was confused because i knew so many far more stressed out people than me, and no one i'd ever met had had seizures from stress.
There were no books to explain what i know now (that PNES is the same as what happens during and earthquake, the earth is releasing built-up pressure that we can see but still exists.) There wasn't anything about the possibility to recover but i've always been stubborn, especially when someone told me i couldn't do something... that came in really handy.
Once i was mostly conscious/functional for part of the day, i started to devise a custom recovery plan based on a lot off trial and error. i realized changing how i was looking at it helped a lot to get my seizures down from 3-5 grand mal a day the first two weeks, down to 1-3 a day, down to 1-3 non-grand mal a week... down to no seizures for months at a time (October 2014 was the last set of full seizures). There is a lot ive learned, I'd be happy to share anything you'd like to know that can help you, or anyone going through it with you.
hi teacher, you do good work
I appreciate that.