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.
Saturday, September 22, 2007
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.
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.
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