Today a chat room has been added to offer live support to one another. This is not intended to replace professional advice or attention - but an anonymous forum for folks to discuss the issues that burden this disorder. And hopefully get some answers!
Twenty two years ago, I felt I had something that was too premature to be diagnosed and treated comprehensively. That if I could survive long enough, someone would figure out what was happening and answers would come. This year they are. For many, they still have not.
The studies I'm seeing on PubMed are coming from S. America, US, UK, Germany, Japan, Pakistan, India, African, Netherlands and more. Psychogenic seizures are a worldwide phenomenon. They seem to affect different aspects of the population in different parts of the world, and this may be due to how the studies are done.
I hope you'll feel comfortable to come to the chat room to either lend your expertise, your compassion or your experiences.
Saturday, June 30, 2007
Wednesday, June 27, 2007
Seizures and Pandemic?
If you have psychogenic seizures, you may be on medications, and depending on what country you live in, your supply may vary. I believe that the pandemic threat is real, and that we do not have to panic about it, but use this time period now to prepare and educate.
There are many good sites to go to for preparedness:
www.perelandra-ltd.com
www.pandemicflu.gov
www.safetycentral.com
http://crofsblogs.typepad.com/h5n1/ (current updates on bird flu)
...and many more. The Red Cross, CDC, WHO, and other fine organizations are offering their knowledge and support to help people understand preparedness and how to do it on a budget.
Consider keeping your gas tank full, having small denomination cash on hand (money could become a carrier), and think about getting your three month prescriptions filled if you can. We may be quarantined for our own safety at some point, so having board games, reading and other nonelectrical entertainments on hand would be nice for our sanity.
Have medical supplies in case someone does get ill. Think about what you want to have on hand in case you do not want to go out. The listed websites have some great lists to help you get started. You can start by getting a little each week if budget is an issue.
During a pandemic, medical/mental health services will be strained and scarce as they will be ill also. Think about what your needs are now, and put a plan in place that would support you should your medical supports be less available for a period of time. Churches, ministries, family, support groups, community services, volunteer groups and other non profits may be able to offer something if you make arrangements ahead of time.
Please don't hesitate to post questions/concerns here or email me for further information as I do not want to turn this into a comprehensive pandemic website. However, I do want everyone to consider being prepared for this ahead of time - as we have the time right now.
Time predictions have been as soon as late this summer, up to years away.
There are many good sites to go to for preparedness:
www.perelandra-ltd.com
www.pandemicflu.gov
www.safetycentral.com
http://crofsblogs.typepad.com/h5n1/ (current updates on bird flu)
...and many more. The Red Cross, CDC, WHO, and other fine organizations are offering their knowledge and support to help people understand preparedness and how to do it on a budget.
Consider keeping your gas tank full, having small denomination cash on hand (money could become a carrier), and think about getting your three month prescriptions filled if you can. We may be quarantined for our own safety at some point, so having board games, reading and other nonelectrical entertainments on hand would be nice for our sanity.
Have medical supplies in case someone does get ill. Think about what you want to have on hand in case you do not want to go out. The listed websites have some great lists to help you get started. You can start by getting a little each week if budget is an issue.
During a pandemic, medical/mental health services will be strained and scarce as they will be ill also. Think about what your needs are now, and put a plan in place that would support you should your medical supports be less available for a period of time. Churches, ministries, family, support groups, community services, volunteer groups and other non profits may be able to offer something if you make arrangements ahead of time.
Please don't hesitate to post questions/concerns here or email me for further information as I do not want to turn this into a comprehensive pandemic website. However, I do want everyone to consider being prepared for this ahead of time - as we have the time right now.
Time predictions have been as soon as late this summer, up to years away.
Thursday, June 21, 2007
Appreciation to The Foundation for Human Enrichment
Good Day!
Many thanks to the Foundation for their support and permission to print their articles. Feel free to read: "Emotion First Aid" by Gina Ross, MFCC, and Peter Levine, Ph.D.; "Helping Children Through Trauma-Childhood First Aid" by Peter Levine, Ph.D.; and "Memory, Trauma and Healing" by Peter Levine, Ph.D.
They not only deal lovingly and compassionately with individual trauma, but with trauma begot from major disasters such as the tsunami and Katrina. They also have a comprehensive training program for professionals.
You can also visit their website at www.traumahealing.com. There is wealth of information including a provider list.
Both this website and www.non-epilepticseizures.com are looking to connect with professional association and professionals who successfully treat psychogenic nonepileptic seizures (PNES).
I offer and challenge the medical and mental health community to come forth and offer your hearts, minds and support to help this understudied, misunderstood, and mistreated area of life.
If 30% of admitted patients to VEEG units are diagnosed with PNES, where are they now? Who is treating them successfully? What is their quality of life? Who is really caring for and about this population? In 2007, are they still the pariah of modern medicine?
Many thanks to the Foundation for their support and permission to print their articles. Feel free to read: "Emotion First Aid" by Gina Ross, MFCC, and Peter Levine, Ph.D.; "Helping Children Through Trauma-Childhood First Aid" by Peter Levine, Ph.D.; and "Memory, Trauma and Healing" by Peter Levine, Ph.D.
They not only deal lovingly and compassionately with individual trauma, but with trauma begot from major disasters such as the tsunami and Katrina. They also have a comprehensive training program for professionals.
You can also visit their website at www.traumahealing.com. There is wealth of information including a provider list.
Both this website and www.non-epilepticseizures.com are looking to connect with professional association and professionals who successfully treat psychogenic nonepileptic seizures (PNES).
I offer and challenge the medical and mental health community to come forth and offer your hearts, minds and support to help this understudied, misunderstood, and mistreated area of life.
If 30% of admitted patients to VEEG units are diagnosed with PNES, where are they now? Who is treating them successfully? What is their quality of life? Who is really caring for and about this population? In 2007, are they still the pariah of modern medicine?
Friday, June 15, 2007
PNES Emergency Department Protocol in the Making
Well, I gave it a whirl, and we'll see how it goes. No comments on it so far. You can see this at: http://www.webspawner.com/users/charmagick/workingemergenc.html
In my experience as both a nurse and a patient, many medical health providers have very little training and information on seizures. There are around 120 types of epileptic seizures, many of which never present in an emergency department because total loss of consciousness is not necessarily acheived.
Psychogenic seizures are still in their infancy as far as understanding, and just getting folks to use 'psychogenic' instead of 'pseudo' and 'hysteria' is a big undertaking.
I know I've been pushing Peter Levine's book 'Waking the Tiger', but I have no financial interest in doing so. It simply is a great explanation of how the body and unconscious store traumatic events and 'speak' them later.
I have experienced more retraumatization in the hands of medical providers who have little to no understanding of PNES (psychogenic nonepileptic seizures). I have been severely bruised, yelled at, neglected, hit, and left in my own urine as 'punishment' as she put it.
It's time to stop. Seizures are not shameful, whatever the cause. Traumatizing seizure patients just adds to the problem. If you don't have space in your heart for compassion, simply provide a low stimulation space, possibly a low dose of anxiolytic and some time to come out of it. And remember that epileptologists state that seizures can only be truly diagnosed while on a VEEG. The 'bedside tricks' can be misleading. Be careful you are not missing something.
In my experience as both a nurse and a patient, many medical health providers have very little training and information on seizures. There are around 120 types of epileptic seizures, many of which never present in an emergency department because total loss of consciousness is not necessarily acheived.
Psychogenic seizures are still in their infancy as far as understanding, and just getting folks to use 'psychogenic' instead of 'pseudo' and 'hysteria' is a big undertaking.
I know I've been pushing Peter Levine's book 'Waking the Tiger', but I have no financial interest in doing so. It simply is a great explanation of how the body and unconscious store traumatic events and 'speak' them later.
I have experienced more retraumatization in the hands of medical providers who have little to no understanding of PNES (psychogenic nonepileptic seizures). I have been severely bruised, yelled at, neglected, hit, and left in my own urine as 'punishment' as she put it.
It's time to stop. Seizures are not shameful, whatever the cause. Traumatizing seizure patients just adds to the problem. If you don't have space in your heart for compassion, simply provide a low stimulation space, possibly a low dose of anxiolytic and some time to come out of it. And remember that epileptologists state that seizures can only be truly diagnosed while on a VEEG. The 'bedside tricks' can be misleading. Be careful you are not missing something.
Sunday, June 10, 2007
Treatment for Psychogenic Seizures
Thank you John!
Yesterday, two websites for treatment of PNES (psychogenic non-epileptic seizures) combined efforts possibly for the first time on the planet.
We simply want to help others find treatment to help end their suffering. See www.non-epilepticseizures.com for their complete list of goals for their website.
I wasn't going to have a blog, but decided to have one when I saw there wasn't any protocol or support for emergency department treatment of psychogenic seizures. I'm in the process of creating one and hope to get input and support. Once PNES diagnosis has been verified, I hope to establish a treatment protocol that is cost/time effective, compassionate and simple for everyone.
Yesterday, two websites for treatment of PNES (psychogenic non-epileptic seizures) combined efforts possibly for the first time on the planet.
We simply want to help others find treatment to help end their suffering. See www.non-epilepticseizures.com for their complete list of goals for their website.
I wasn't going to have a blog, but decided to have one when I saw there wasn't any protocol or support for emergency department treatment of psychogenic seizures. I'm in the process of creating one and hope to get input and support. Once PNES diagnosis has been verified, I hope to establish a treatment protocol that is cost/time effective, compassionate and simple for everyone.
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