Friday, November 16, 2007
Happy Thanksgiving TLC
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
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
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 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
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
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
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:
(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
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
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
Sunday, July 29, 2007
Week of 7-30 Chat Room Schedule
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
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
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
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
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
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.

