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PNES- NON EPILEPTIC SEIZURES

Wed, 11/12/2008 - 17:45
  Hello there. I just wanted to know if there is anyone that is living with pnes... My sister has been told she has this and it is very confusing. I have done some research on this condition..but would like to hear from anyone who has this.  I just have some questions about his condition.. right now my sister is in the hospital and i amjust trying to gain a better understanding for her and us.. Thank you..edie

Comments

Re: PNES- NON EPILEPTIC SEIZURES

Submitted by terter on Sat, 2011-04-23 - 12:35
Hi again Tadzio! I, too, have done a bit of research on the validity of TFT therapy in the field of Psychology. Many professionals find this to be just a farce. Now what I do know is that since my seizures began immediately when I was the most anxious and beyond upset...to the point of just feeling hysterical inside. Since then I have also had a few panic attacks, difficulty walking with a total resolution of it, and then being able to actually run after a short 5 minute recovery. I see clearly now that my seizures/anxiety condition are directly related. To me, anything that is calming, soothing, and helps me to get into that zone of relaxation is worth putting my all into. My mind has told me that I have sensory triggers that lead me to an aura, leading to the inevitable seizure. I keep telling myself that I no longer have triggers, that this is something that evolved over time that is not true. The other day I went to therapy and told my therapist that I want to continue to learn TFT. I knew the controversy and just decided that since there is always a brain/body connection, that I will use anything I can to re-train my brain into not perceiving sensory stimulation as a trigger. We began the TFT. I had a seizure with all of the tapping. OK. I told my therapist that tapping on my body...ie sensory physical stim. was a trigger, and I know that I can desensitize myself, as I have done with that terrible skunk smell we all know, that caused me to have seizures for years. There are so many skunks near us, that after having so many seizures from their pungent odor, that I eventually stopped having seizures from strong obnoxious odors! I kept telling myself during this therapy that tapping does not cause seizures, that tapping will help me to learn to heal myself...no matter what. After trying over and over and having 2 more seizures, or myoclonus....I got down to a twitch. PROGRESS! I did the TFT today about 6 times and had NO SEIZURE from that sensory stim. After doing TFT...we went into some meditation...very deep breathing...the old..your feet feel heavy...your knees...all body parts..etc. When she went to my heart feels relaxed, I started to tear up. I have to work on that precious heart of mine. I am so used to it pounding with anxiety that it was hard to relax that part. We started again until I had no seizures, no twitching and no anxiety at all. I was so relaxed that I could barely walk! This was the day before yesterday. Yesterday I had NO seizures. So far today I have not had any...we even went to a viewing yesterday where I saw old friends. I told them my diagnosis...showed them the stone that I keep with me to hold and rub...and use to transfer my rocking and other self soothing behaviors to. We laughed and then I had them hold my stone...I said...whatever works! Come to find out, I talked with 3 women. ALL of them have anxiety problems...an obstetrics nurse, and two other professional women. We spoke in detail and depth about our struggles for really the first time. It was freeing for all of us. I mentioned the TFT therapy and they are going to look it up. I am going to be open to anything that is a tool to help me to help myself. This is a non-medicating technique and does no harm. It helps me to relax. If it is just the power of suggestion, or a distraction technique, or works like acupressure...does it really matter? What matters to me is results and belief in getting well. It is very empowering to have tools! I have decided to focus only on what works for me, and to just forget about anyone's statistics or what the medical field as a whole thinks about this technique. I worked in the medical field, and found that talking, listening and touch is an incredible healer. I am also praying-known to be beneficial for sure....medically and spiritually. My therapist asked me what is GOOD about the seizures for me? At first I said...NOTHING...I just want to get rid of these seizures I have had for over 18 years! Then I really thought.....it is a HUGE relief after I have them. Why? My aura is a huge build up of feeling...negative feeling..like impending doom. When feeling so incredibly tired after a seizure, it ends up being so relaxing...I just want to rest and be quiet...well, isn't that what I NEED? I am seeing very quickly the connection inside me, and my body crying out for relief. I am very tuned in to my body and mind connection now. I always thought I was, but with this disorder, I found that I was fooling myself. Talking and having tools is opening those tough doors of truth. What do you think about all of this? terter

Re: PNES- NON EPILEPTIC SEIZURES

Submitted by terter on Sat, 2011-04-23 - 16:44
PS! I forget to answer your question as to what therapy U of Penn suggested for me after my diagnosis of PNES. At first my neuro wanted me to come right to Penn to see someone. Driving from Cape May County NJ to Philly used to be a breeze...it wouldn't be right now...so she wanted me to see a therapist near my home that my insurance covers. We talked about a few types of therapy, and I told her that I thought I would respond the best to a structured type of therapy like Cognitve...ummm I forget right now...but there was no one in my area.I also think that my neuro mentioned a group which I thought was out of the Epilepsy Center there that I went to. I will have to check into it. Wouldn't that be incredible! Later I can go! Hopefully I was hearing her correctly! I found my therapist by calling ones on my provider list, and telling each one what I have, explaining my symptoms and needs...saying it was a deep seated psych trauma that presented itself as seizures that are not epileptic, but psychogenic. I was referred to my therapist now, who treats among other things, PTSD patients, which is what I feel in a way that I have. Today I burst into sobs seemingly out of nowhere while watching TV. A cat died in the program...geeze...I do feel fragile as I am allowing myself to let out all emotions. I recovered and went outside since last season, and pulled some weeds...it felt so wonderful, as I couldn't even walk in December! I feel like I am gaining freedom one step at a time. terter

Re: PNES- NON EPILEPTIC SEIZURES

Submitted by terter on Sat, 2011-04-23 - 16:46
PS! I forget to answer your question as to what therapy U of Penn suggested for me after my diagnosis of PNES. At first my neuro wanted me to come right to Penn to see someone. Driving from Cape May County NJ to Philly used to be a breeze...it wouldn't be right now...so she wanted me to see a therapist near my home that my insurance covers. We talked about a few types of therapy, and I told her that I thought I would respond the best to a structured type of therapy like Cognitve...ummm I forget right now...but there was no one in my area.I also think that my neuro mentioned a group!! I will have to check into it. Wouldn't that be incredible! Later I can go!Hopefully I was hearing her correctly! I found my therapist by calling ones on my provider list, and telling each one what I have, explaining my symptoms and needs...saying it was a deep seated psych trauma that presented itself as seizures that are not epileptic, but psychogenic. I was referred to my therapist now, who treats among other things, PTSD patients, which is what I feel in a way that I have. Today I burst into sobs seemingly out of nowhere while watching TV. A cat died in the program...geeze...I do feel fragile as I am allowing myself to let out all emotions. I recovered and went outside and pulled some weeds...it felt so wonderful, as I couldn't even walk in December! I feel like I am gaining freedom one step at a time. I am looking forward to having Easter dinner at my son's house tomorrow...no stress for me having to have it here..I am cooking food to take...so nice.. terter

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