Part 3 - Treatment Strategies for Psychogenic Non-Epileptic Seizures (PNES)
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- Опубліковано 20 сер 2024
- In this video, Dr. May will discuss:
The importance of coordinating treatment with a neurologist/epileptologist, psychiatrist, and psychotherapist.
Ways to conceptualize and understand PNES and how it occurs.
Key elements that can be beneficial in psychotherapy for PNES.
Ways to develop a PNES response plan.
Treatment outcomes and what influences them.
Some excellent websites with more info:
www.nonepilepticseizures.com
www.nonepilepti...
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Holy cow. I have found this information. I struggle with PNES and it really effects my work. I’m a massage therapist and when I have an episode I can not work, which is a huge bummer. I know it’s anxiety. I struggle with childhood PTSD. Now that I know this is a thing I can research and learn. Thank you 🙏🙏🙏
Thanks for sharing your experience. I'm glad this video was helpful for you. I wish you the best of luck in your recovery and healing!
Ditto!! Best talks on my new diagnosis of FND/FMD & now I'm seeing that an episode of so many of the symptoms of PNES a month long 6 months before my diagnosis, are spot-on... I'm so relieved, and Validated, since no Dr could tell me why I was "fainting" or "passing out" and shaking for a month long along with my Essential Tremors!! You have such a comforting, easy way of speaking which makes me feel accepted and understood😊Thank you so, so much Dr May💕🌷🫂so glad I found you🤗Love & Blessings from Canada 🇨🇦
I was diagnosed with epilepsy in 2001 I’m just know learning about PNES. This makes so much sense.
So helpful! Thank you. My daughter has been dealing with PNES for 4+ years now and it’s hard to find doctors/psychologists who understand it and can treat it. She has autism, adhd and high anxiety so the part about over regulating made a lot of sense to me.
I am the leading expert and I can treat it. In order to treat it you have to be willing to accept that this is a mental suppression problem. When people push their problems way deep down inside it can manifest itself physically. Exposure therapy is the answer and the cure! You have to be willing to deal in order to heal. I help girls testify against their abuser’s in court and it totally cures the PNES. There’s many other types of exposure therapy that can help!
ADHD, anxiety and autism is also my expert fields of study. I am willing to help for free!
This is the best video I have seen so far about PNES, thank you so much! My 12 yo daughter started having seizures in December last year and they seem to be non-epileptic. She has been diagnosed with ASD and OCD last summer, has a lot of sensory issues, anxiety, etc. We have a therapist, psychiatrist, neurologist, our GP is aware as well. Her school is also on board and very supportive, she can join school online on the days she has a seizure/has migraine, etc. I started to build a lot of anxiety though, I know I have to stay calm when she has a seizure but I am freaking out and every morning I wake up with this fear about what's coming that day... Anyway, my main question is about the long seizures. Most of her seizures are short, but she so far had two attacks taking half an hour and 1 hour, so we called the ambulance both times. She was taken to the ER and was given injection to calm her down (I think benzo). I don't know how a long seizure would end without medical help and is it advisable to call the ambulance or not. I am hearing it is not needed for PNES but our GP and neurologist both said that if it takes formore than 5-10 minutes, we should def call the ambulance.
Just discovered your channel and am so glad to have done so! Excellent information clearly delivered. (I've been dealing with PNES for the past 14 years.) Many thanks! Off to order Lorna Myers' book...
Wow 🤯 this makes so much sense
Thank you.
Drs haven't helped me. I feel like a guinea pig. And, when I have an episode my arousal does not go down, I panic more because I also have a phobia of being stuck and can't communicate. (Like someone being in surgery I can feel everything but can't express the intense pain.) I panic because I need help to get me out of my seizure. When I'm out of the seizure I'm like a stroke patient, relearning motor skills, this can take hours. I'm exhausted.
Hi Crystleen, thank you for writing. I’m so sorry to hear about your struggles with PNES and how doctors have not offered any helpful treatment.
If you’d like, send me an email and we can talk further and maybe try to come up with a plan. Jenjabmay77@gmail.com
My daughter also reacts more like you described. It’s scary to feel like you don’t have control of your body! We found that when my husband makes jokes during an episode, she will come out of it with a smile on her face.
@@rachelhaskin5558 Wow, Interesting, Ive had 11 PNES and Ive been alone every one, but my dog of course and she runs off for a few minutes. Takes me about a week or two to feel halfway normal.
I am the leading expert on this! Were you abused or are the seizures just from having major anxiety? Find out what is causing it and then confront it! You have to be willing to deal in order to heal! PNES is a mental suppression problem. When people push their problems way deep down inside it can manifest itself physically. I help girls testify in court against their abuser’s and it totally cures the PNES! There’s different reasons for PNES but there’s also different types of exposure therapy that works! If you have any questions please don’t hesitate to ask.
I read Lorna Myers book. I was left saddened that it suggested to me that you have no hope of living a reasonably normal life (chapter 9). Just alter your life to deal with it. Put rubber mats on the floor. Don't hold your child if you ever do manage to have a child. Wear a helmet. Apply for disability.
May be practical advice, but there was no success story in the entire book that I recall about how someone improved substantially. Are you supposed to give up and just decide to Iive a highly limited life? I am probably being a bit too negative on the book based on the ending and my interpretation of it. There was quite a bit there to make it worth the read.
It was also sad as to how long it takes to diagnose PNES and the issues along the way. Experienced that with a love one for several years.
I agree that DBT skills can help. I did not really hear much about how brain energy related to nutrition and exercise, etc. can be a factor and elements to consider in addressing PNES.
I like the expanding life approach Jennifer describes at the end of this video. And that 1/3 get better after getting diagnosed. The treatment resistant PNES is a sad situation. I pray more effective treatments are developed. Thank you.
I’m struggling to understand my diagnosis of this, my life runs smooth and don’t have any worries or stress, I don’t suffer from depression or anxiety, I’ve had these for over 4 years and no one will help me because I don’t want to end my life of I don’t feel I’m a failure, but the last few weeks my seizures are getting worse, last week I lost count at 30 seizures and and another night I was having them for over 6 hours, was having pain in my chest through it, the only thing that bothers me is it’s getting me down with getting no help or support, I just don’t know what to do, I’m in the uk
I'm so sorry to hear about your struggles with PNES. It can be so hard to go through life with PNES and not have enough support or answers.
Even if there are no clear causes for the seizures, maybe start by keeping a journal/self-monitoring chart documenting what was going on shortly before the PNES events happened in terms of life events, emotions, body sensations, relationships, stressors, etc. even if you have not noticed anything yet. It could be that your emotions are being channeled into your seizures and are not fully in your awareness. It might begin to open up some insights and correlations that could possibly lead you to some solutions.
People have also told me that sharing some of the PNES videos and/or information with friends and family has helped them to get more support and the support in itself brought some comfort and relief. So perhaps that might be something to try.
And continue to practice some self-acceptance, validation, and compassion in the process, as it is difficult and you are certainly not the only one in this struggle. Online forums of PNES sufferers might also be a beneficial source of support, especially if you do not know of anyone else in real life who has them.
Again, I'm so sorry to hear about your struggles and wish you help and healing.
Dr. May
@@jennifermayph.d.2761 thank you for the reply, most of the time I’m fast asleep and they wake me , I nearly jump out of bed, my kids live away but I see them still and have contact, they both help a lot when they can, I don’t see the rest of my family and I’m single, now worries or stresses my life is easy going apart from a lot of medical issues, I just get sick of being brushed under the carpet and our drs are not like they use to be,
Why nlt treat with medication when seizuring? My seizure wont stop unless i get something thro iv
Medication doesn’t work for PNES “seizures.”
Do you know where an LICSW could get proper training to treat people with PNES?
Sorry for the delayed response. If you Google “PNES training course” a few online options come up but I don’t know how good they are.
But there are also a few books that offer guidance on treatment protocols, which I cited in my video. And the general treatment skills required aren’t that complicated. So if you have a reasonable degree of clinical experience, you should be able to apply them.
Thank you! @@jennifermayph.d.2761
I live in Colorado, had 11 PNES seizures every 30-40 day for 2 years now.... I have Medicaid and been to every doctor in my area and they dont know anything about PNES, nobody does CBT that are in my circle....Do you have any recommendations ?... 1-2 hours a day of Ashtanga yoga a day seem to help, but thats the only thing I got besides these Hydroxyzine pills that I realize the vet also give my dog... I feel this is what is causing the Fentanyl epidemic, I read diazepam cam help but doctors dont give out medication anymore. Appreciate any advice, thanks
I feel more anxious after a PNES seizure ? But its getting more unusual, I had 2 of them during positive moments, back home from first day of work feeling happy I might start to catch up financially... then BAM ! Seizure soon as I walked through my front door all happy...
Thanks Jennifer,
This is one of the most informative videos and ive been researching off-on for 2 plus years now... Don't want to lose my house (Employment is hard to keep), trying to get this under control.
I’m so sorry to hear you’ve been struggling with PNES and finding appropriate providers. Maybe try this link which lists people in Chicago who specialize in PNES:
nonepilepticseizures.com/epilepsy-psychogenic-NES-information-referral-sites.php#col
Thanks for sharing your experience. Some people do report feeling good or neutral just before a seizure. Sometimes even positive feelings can be overwhelming or scary on some level. And sometimes there are other more hidden feelings behind them that are less conscious (such as worrying about the positive feelings-or new job and financial success-ending or worries about whether you deserve something good). But you can practice doing your own self-reflection to better understand what it could be about for you.
Thank you… and I wish you the best of luck with your new job.
I can't afford to go to the psychologist :(
So sorry to hear that… maybe it would help to try a few of the techniques here on your own?
@@jennifermayph.d.2761 here in my country they rarely go to a therapist they think it's shameful to do so, and that it's pointless
@@jennifermayph.d.2761 I've been dealing with these seizures (PNES) for two years and my family members don't believe me when I say that I cannot control it! Btw I live in Algeria
@@jennifermayph.d.2761 I would really appreciate it if you could help me I really want to heal 😭
So I could function as normal human being and so that I would stop bothering them at night