Friday, December 07, 2007

Friday, November 16, 2007

Happy Thanksgiving TLC

Now is a time to really care for your body. Even if the holidays are something you love, fun can be stressful. Our diets change, daily habits are different, we sleep different, drink different water. I know all this makes a difference for me.

And taking medicines at different times of day changes things for me too.

Doesn't mean we can't celebrate - a little bit of planning can go a long way.

I have a backpack with toiletries, back up medicine, snacks, and anything else I think I might need if I leave on a last minute invite. I work at having all the bills paid up and filing done before Thanksgiving if possible so I can relax more for the holidays.

Anything I can do to 'get things off my mind' to just enjoy really helps me relax and helps me have less seizures. Even having a less cluttered living space helps - along with a dayplanner as I can't drive. I have to plan all my travel ahead of time and keep my cell phone charged.

Medicines stay filled for three months if possible. Less fuss.

Relaxing music is on alot, and I work at paying attention to what my body feels like. Especially migraines. Years ago, I didn't know I had one until it was in the agony stage. Now I can catch it when I see the 'squiggles' in my vision. As you have probably guessed, I'm rather anxious : ) So relaxation is a major goal and focus in my life.

The more relaxed and happy I am the healthier I think I'll be!
Happy Holidays!

May you have wholeness and health,
Love to you and your loved ones,
Charlene

Wednesday, October 24, 2007

Preparing for the Holidays

Yes, that time of year is coming up again. The holidays are joy for some of us, a horror for others. Season Affective Disorder (SAD) can add to the frustration for those who have shorter daytime hours in the winter.

For those of us who suffer from seizures, whatever type, it's a good time to take stock in what we need to take care of ourselves. Flu/cold season arrives, parties, family gatherings and changes in food and water intake all stress our bodies.

It's a time to make sure to get enough or extra rest, plenty of fruit and vegetables, and some outdoor time each day. Taking medications on time can also make a difference. Carry backup with you, or have it at work just in case.

Do gift yourself with a healthy end of 2007, your loved ones will be gifted also!

Friday, October 05, 2007

Flu Season Prep

For those who take medicines or have other health conditions, it may be wise to stock ahead of time this year.

Though bird flu has still not come to this country (USA) in humans, it could in a very short time. Pandemic preparation is wise for all of us.

One good site to check for info regarding how to prepare for pandemic is:
http://www.perelandra-ltd.com/

You don't need a bunker, or go into debt to do it. Many local, state and the federal government websites also have lists and 'how-to's' for individuals, businesses and nonprofits.

We have a unique situation in that this is the first time in known history that we can prepare for this kind of event.

I look forward to your comments.

Saturday, September 22, 2007

Humane Treatment

I have touched upon being treated in various ways while being treated for seizures. In my thirty year experience in the medical field I've met wonderful caring people who only want the best for the patient. I have met others too. We are human. We have egos and play politics too.

I highly recommend that if you have a seizure disorder that you not only have an advance directive in place, but an active advocate on your behalf when you are not able to speak for yourself.

Though my negative experiences with the healthcare field while as a patient are hopefull unique, I certainly want to help you avoid them.

In some emergency departments, hospitals, psychiatric facilities and so forth, seizures can be very poorly understood. Organic and nonorganic (meaning epilepsy and nonepileptic and/or psychogenic nonepileptic seizures).

If you are fortunate to land in a good epilepsy care facility (not all are created equal) you may have a chance at comprehensive diagnostic and compassionate care.

For some reason modern medicine in many areas have not caught up with the notion that there are many types of seizures (140 just in epilepsy) that are both epileptic and non epileptic. Emergency rooms are overrun with folks who are seeking narcotics, escapes from bad situations, etc.

They are not comprehensively equipped or trained in seizure diagnosis (need an epilepsy unit for that). I personally feel that since this is so, that the 'tricks' of the trade in deciding whether a seizure is 'real' or not, needs only to decide the amount of IV medicine that needs to be administered to save someone from status epilepticus.

All other judgements/attitudes can remain at home. Modern medicine does not have all the data in yet. I honestly feel the number of outright 'faked' seizures are very small, and that person is probably well known to the hospital.

I have a proposed emergency department treatment plan on my website. I hope it will be reviewed and implemented in part or whole so that seizure patients will begin to receive professional loving attitude of care they have a right to.

Please don't leave your patient in their urine as 'punishment'. Please don't pinch them harder and harder until they have black fingernails, sternum and bruises all over. Please don't rip out hair.

If you are really concerned about this phenomenom, read what's out there on Entrz PubMed. Look at my website. Look at what is working. Feel free to write to me. I've been on both sides of the bedrails. Thank you for listening.

Wednesday, September 05, 2007

Treatment That Is Working For Me

Hello All,
This is what is working for me in hopes it may be helpful for you.

I have had both epilepsy and psychogenic nonepileptic seizures (related to trauma) for twenty two years.
I have experienced improvement with the PNES from EMDR (eye movement desensitization and reprocessing) and somatic body work just this year.

The EMDR is usually done by counselors, psychologists, etc., and bodywork is done by many folks such as physical therapists, massage therapists, nurses, chiropractors and so forth.
The EMDR is very gentle as well as the somatic body work if done with the right people. If you get a licensed practitioner, your insurance company will reimburse.


I had chronic right arm pain related to childhood trauma that was resolved by bodywork. I also had trauma from car accidents that has been healed with this work. EMDR has helped me 'see' childhood things without deep emotional involvement and assisted in resolution.

I never considered the car accidents as being 'trauma', as my injuries were 'treated and released'. My body sure did.

My PNES has all but ceased.

I do get seizures in my sleep if I overdo it. It's a chronic problem of mine when I start to feel better. I want to do everything as I have felt awful for so long. Balance is something I am not yet good at!

I also worked on an ambulance for five years. I felt alot of it was traumatic. So was alot of my nursing experiences. So much adrenaline releases, hard situations/decisions in the moment. I was young and loved it but it did leave some scars.

I've been a nurse almost thirty years. In hospital for five.

Being a patient is traumatic too!

I also have PTSD from the childhood stuff so I take Ativan for anxiety, Prozac for the resulting depression, seizure meds, medicine for thyroid and kidneys, and now only occasionally do I need the pain medicines.
I have two herniated discs, one in neck, one in low back. I'm nursing them as I do not want surgery. I have a worker's comp injury from computer overuse - right shoulder nerve entrapment. If I end up in the hospital with PNES, my MD does give me small amounts of IV Ativan just to help with anxiety - not the large doses normally given for epilepsy. IV ativan turns me into a very weird person. (crawl over bedrails, nonstop talking, etc.)

I have a vagal nerve stimulator to control the epilepsy - it's like a pacemaker for the brain - a battery with a wire that wraps around a large nerve in my neck. It fires every 3 minutes for 30 seconds. This has basically stopped the epileptic activity (as long as I don't overdo!) with the medicine.

As far as I know there is no special medicine just for NES/PNES, unless the NES is found to have a clinical cause like mitral valve prolapse (a minor heart malfunction), diabetes, etc.

There are medicines that can assist with accompanying symptoms such as depression and anxiety. Counseling has been very helpful to me in part due to the less than professional treatment I've received from the medical community over the years. I've also needed intensive treatment for the childhood issues.

My spiritual path has been a great comfort and support as it teaches love, nonjudgement and forgiveness of self. Being with a group of people who practice these has been very healing.

Lastly, speaking up for myself when medical folks have treated me poorly has been healing too. When I found out that epileptics were being treated less than humanely at an emergency room, (and I had too) I chose to speak up to this hospital.

I've been speaking to them now for years, and don't know how much headway or good has been done. At least we now have a full time neurologist and I hope that will increase the knowledge level around seizure care. I know it has made me a stronger person, and the last horrible incident spurred me on to find the article that recommended EMDR - and that has helped my healing.

I hope this helps yours.

Friday, August 31, 2007

New Faces - Chat Room Poll

Hello All!
My apologies for not being active recently in the chat room. I over-did myself and had to make myself take a breather.

I saw some new faces on a message board and thought it a good time to ask if there is new interest for times for scheduled chatting. Current interest for times in the UK are 7:30-9:30PM UK time (11:30-1:30PM PST usa).

You are welcome to use the chatroom anytime whether I'm there or not - and you need to have Java loaded (it's on the page if you need it).

I have epilepsy and psychogenic nonepileptic seizures (from early childhood trauma). The PNES is resolving from recent somatic bodywork and EMDR (eye movement desensitization and reprocessing). It's not necessarily for everyone, but has worked for me.

Looking forward to your input!

Tuesday, August 21, 2007

Psychogenic Seizure Update

Hello All,
Sorry I haven't been as active on the chat, I hope others have been going out and using it. I've been real busy with this move, and not having seizures has given me new energy to do things. Like: laundry, grocery shopping, vacuuming, doing dishes, washing floors, and yes having fun. Actually was able to hike up a local river over the weekend.

I did push it a bit far in the 100 degree heat, and had some difficulties staying hydrated on the medicine I take. But we took it slow and it was a beautiful day.

There can be life after seizures. Or even while you have a seizure disorder if you are careful and plan ahead. Of course you need your doctor's input on what you can and cannot do (diving is out for most of us) but snorkling might be in with a buddy and MD permission.

One really big key for me is not getting overtired. And that is real hard, because as soon as I start feeling good, I want to do it all. And if I do, I end up in the hospital. I know this. I've done it over and over again. I'm 48 now. I don't want to do this anymore. So I recruit friends and relatives to help me slow down and/or give feedback if they see me doing this pattern yet again. I've been a type A - I take life in big gulps. Sipping is much healthier.

With the EMDR and somatic body work the PNES is waning. Life looks possible again. What a miracle.

Sunday, August 12, 2007

Chat Room Schedule:

Monday August 13th: 11:30-1:30PM PST
(add two hours for central time, eight hours for UK)

If you need to load Java it is available on this Blog page.

Remember to make a noise when you enter.

Hope to see you,
Charlene

Saturday, August 04, 2007

This Week's Chat Room Schedule 08-06-07

Pacific Standard Time (Add two hours for Central Time)
Monday 5PM-7PM
Wednesday 11:30-1PM
Friday 11:30-1:30PM
Saturday 11:30-1:30PM
Remember to make a noise when you enter, (click on the button with two notes)
Hope to see you there! Email me with questions/concerns,
Blessings,
Charlene

Tuesday, July 31, 2007

Chat Room Schedule Change for Tuesday

Chat Room Schedule Change:

TUESDAY IS CANCELLED
My apologies for any inconvencies this may have caused. Please feel free to go on without me!
Blessings, Charlene

Monday, July 30, 2007

"I am only one. But still, I am one. I cannot do everything, but still I can do something. And because I cannot do everything, I will not refuse to do the something that I can do."— Edward Everett Hale

Sunday, July 29, 2007

Week of 7-30 Chat Room Schedule

Hello,
Please join us!
Pacific Standard Time (Central Time, add two hours)
Monday: 5PM-7PM
Friday 11:30AM-1:30PM
Saturday 11:30AM-1:30PM
Remember to make a noise upon entering. (Click on the button with the two notes.)

You can also set up other times to chat if you wish through email.
Blessings,
Charlene

Sunday, July 22, 2007

Next Week's Chat Schedule

Hi,
Here are some times for the UK,
Tuesday: 11:30-1:30PM PST
Thursday: 11:30-1:30PM PST
Saturday: 11:30-1:30PM PST

Remember to make a noise when you enter.
If anyone else wants different time frames, please let me know. This is 7:30 to 9:30PM for the UK, 1:30-3:30 Central US time. No one attended the 5-7PM slot this week.
Blessings, Charlene

Friday, July 20, 2007

Saturday July 21st Chat Room Time Change

Hello All,
Tomorrow, I will not be available to host 11:30 to 1:30 PST. Please feel free to go on without me! That's 1:30 to 3:30PM Central Time.

I will be available 12:30 to 2:30 PST which I know is a bit late for the UK and my apologies -

REMEMBER to make a noise when you enter, I'll be listening!
Charlene

Tuesday, July 17, 2007

Housecall for Neurologists and Psychiatrists - Bridging the Gap

This housecall is for all neurologists, epileptologists, psychologists, and psychiatrists. I thank you for your patience and sense of humor with my posts. They are meant sincerely and without sarcasm. This has come from years of frustration of being referred back and forth from neurology to psychiatry to no avail and/or being put in the middle of both disciplines with conflicting diagnoses. Though I am now through most of this, many others are still experiencing this maddening scenario. Your input is most welcome.

Back and forth between neurology and psychiatry with conflicting diagnoses for years I go... Psychiatry says the VEEG is NOT the gold standard for epilepsy, everything is fallible. Neurology says it is not. Now where do I go?

Psychiatry won't talk with neurology, neurology doesn't have the time to talk it over, says it won't help. What is the patient supposed to do? They are having episodes almost every day. Insurance only pays for allopathic medicine. Who is supposed to advocate? The primary care MD only knows allopathics.

Being a nurse case manager with knowledge of 'the system' still took me twenty two years to find treatment that worked.

It is no small wonder that PNES patients yearn to have a 'normal' physical illness that can be treated with an insurance payable medical treatment that doesn't begin with 'psycho'.

Thank God for Peter Levine and Dr. Selim Benbadis. And many others I am yet to learn about. Many are healing because of their pioneering spirits and compassionate hearts in this misunderstood field. Their articles are available on this website.

Fortunately, EMDR and Somatic Experiencing can be taught to insurance payable providers making treatment more accessible and palatable to PNES patients. Hypnosis, biofeedback and cognitive behavioral therapy (CBT) are also being reported as helpful.

EMDR and SE just happen to be working for me.

It will be a good day when there is a page full of experienced PNES providers to be given out by the ED to the PNES patients...

Sunday, July 15, 2007

Doctors Who Treat Psychosomatic Disorders

There is a website that you can access: http://www.holisticmedicine.com/ that has a search engine that includes psychosomatics.

I can't vouch for them, other than they are members of this association. I easily found two in California, and would need to do further research to know what they actually 'do' for methods.

Please let me know if you are a practitioner or a patient, and if you have any input on this website, or resources that treat this area.

Just because the word 'psycho' is at the front of the word doesn't mean...well, you know.

Friday, July 13, 2007

Chat Room Schedule Change

Please note a chat room schedule change to accomodate those in the UK:
Saturday: July 14th; 11:30-1:30PM
Monday: July 16th; 11:30-1:30PM
Friday: July 20th; 11:30-1:30PM
Wednesday: July 18th; 5-7PM
All Pacific Standard Time
Next week, I'll post a regular ongoing schedule,
REMEMBER, make a noise when you enter!

Thursday, July 12, 2007

Chat Room Tentative Schedule

Hello,
I'm back and ready to host. Let's try Monday, Wednesday and Friday AM: Pacific Standard Time: 9AM to 11AM (That's 1AM to 3AM GMT);
and 7PM to 9PM PST Tuesday, Thursday and Saturday (1PM to 3PM GMT).

REMEMBER: Make a NOISE when you enter...I'll be listening.

Let me know how that works for you, we can change out the times if you can't make it.
I'll post if I can't make it.

Monday, July 09, 2007

Chat Room Update

I'll be back to host later this week if all goes well. Feel free to give input as to what hours work for you and I'll accomodate as best I can for everyone. If you are interested in hosting please let me know that too.

Sunday, July 08, 2007

Treatment for Psychogenic Seizures, Copyright

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Chat Room Today

Sunday, July 8th, the Chat Room will be hosted from 5AM to 5PM PST. That is 3PM to 3AM for all you UK'ers! Please make a noise when you enter and give me 5-10 seconds to enter, thanks!
Looking forward to seeing you, Charlene.

Saturday, July 07, 2007

Chat Room Scheduling

As of the moment, you may come into the chat room at any time. Monitoring will be scheduled, and times will be posted here and at www.nonepilepticseizures.com 's message board.

As soon as I finish my move next Tuesday, and have more input from others, a regular schedule will begin.

All input is welcome. Looking forward to seeing you.

Today, Saturday, the room will be monitored from 10AM -2PM PST. Longer if there are chatters.

Wednesday, July 04, 2007

Many Names, Many Kinds of Seizures

In epilepsy, there are a reported 140 types of seizures. To date, I have not found a number for PNES (psychogenic nonepileptic seizures). There are descriptions of dissociative seizures or conversion disorder that mimic epilepsy very closely to other accounts that do not.
Older terms such as hysteria and hysterical epilepsy are not used as much any longer as they are understandably not well received and not necessarily accurate.
Labels can be crippling.
Patients will label themselves as crazy as soon as epilepsy is ruled out. If the diagnosis of PNES is not delivered with compassion, education and understanding, much damage can be done. The second component that must be always included is a comprehensive treatment plan with follow through.
Please don't let these people slip through the cracks. Take the time and interest, or find someone to do so for you. If you have diagnosed PNES, find someone in the community your patient lives in that treats somatic disorders, PTSD, dissociative disorders, and familiarize yourself with Peter Levine's work at traumahealing.com. Dr. Benbadis, an epileptologist in Tampa, FL is having success with EMDR (see "The Truth of Psychogenic Seizures, and EMDR Explained).
I'm doing well with EMDR and with a somatic treator. Other folks I'm speaking with are trying biofeedback, self hypnosis and cognitive treatment with varying success.
Thank you for dropping your judgment around these patients. They are suffering very deeply and help is scarce, hostility abundant. They have been grouped in with malingerers and fakers. Please help separate them out and give them the help they need and deserve. Let's all do no harm.

Saturday, June 30, 2007

Join the Chat Room

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.

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.

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?

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.

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.