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Tue, Jul 28 9:21pm · Questions: EEG and Privileges in Epilepsy & Seizures

Hi @johnbishop, I seen my nurse today and she is setting up a referral to level 4 epilepsy center several hours away. She said EEGs are expensive and 1 a year would be excessive but also said lets see what the epilepsy center says. So the article you gave me hasn't filtered down yet. I'll take it with me to my appointment in September at the Epilepsy Center. It does make me wonder what an EEG costs and what the insurance companies have to say. I'll probably end up giving them a call.

She is also getting me a sleep study setup. We hope to have that done by the time I go to the epilepsy center. I am very tired most days so we both suspect the CPAP is not set correctly. She also told me today the neurologist who read my sleep deprived EEG said I was seizing every 6 seconds. A few more than the 5 per day I had estimated. No wonder I am tired and have trouble remembering anything, every 6 seconds I am rebooting. The reboot lasting 1-1.5 seconds.

My last two providers have had privileges removed from hospitals. In one case I fired the hospital and probably should have taken them to court but it isn't in my nature, and the other is why I asked the question. Given my first experience I have to think there is a whole bunch of reasons a doctor may lose privileges that have nothing to do with their competence.

I can answer the question regarding privileges. Please don't jump to conclusions regarding the experiences of others. I think you put a damper on anyone answering the question, perhaps that was your intention. Whether it was or not I can work around it so no worries.

Thanks for your time, have a good evening. Love the article you sent me. I always like it when the scientists agree with me.

Mxy

Tue, Jul 28 9:29am · Questions: EEG and Privileges in Epilepsy & Seizures

Hi @johnbishop, sometimes I too am surprised by the answers I receive to questions I ask. I try not to have a preconceived notion of what I might get and instead attempt to look at it all as data. So, I am still curious if others have experience with the privileges scenario.

Thanks for the link, I guess I am more interested in what is actually happening. It does seem the author of the article suggests more EEGs should be done compared to what is happening in my case. However the mere fact the article needs to be written would suggest in actual practice it is not the case. I am curious what is happening in other Dr. offices.

The article appears to have been written in 2005 so that would be plenty of time to have filtered down and should actually have been put into practice by now. I am going to be interested to see how my neurologist wants to track my seizures given my perceptions are wildly inaccurate. Of course I am still curious what is happening in other Dr offices.

The article also seems to suggest the reading of the EEG is subjective. I do know my previous EEG was read by a different neurologist than this time. What I take away from that is we really don't have a baseline.

All of this makes me even more curious what is going on in other Dr offices.

Thanks for your input.

Mxy

Tue, Jul 28 7:57am · Questions: EEG and Privileges in Epilepsy & Seizures

Does your Dr. run EEGs to determine effectiveness of medicine or treatment changes? If not, how do they do it? What does it take for a Dr. to lose privileges to a hospital? Thanks for anything you can provide.

Mon, Jul 27 1:18pm · What is your experience with Lamotrigine? Side effects? in Epilepsy & Seizures

Hi @maggiek, I am just a little bit behind you in years, feel the same way as you about meds and expect to live forever. You really should be able to see your granddaughter get married, have kids and see them graduate from college. Someone is going to live to 150, why not you?

I have only recently become aware of other people having spent most of my years looking inward. I find myself interesting enough to stay focused there. It is probably best too because I have some traits that, if they were turned outward, would just upset others. But yes I too am amazed, oh boy here I go, at the sheer idiocy of people and their outlook on epilepsy mental illness and things they generally don't understand. It is like people who think the world is flat or I who believes it is round but not having room in my mind for the possibility I am wrong. No matter what I believe I make room for science. What is wrong with people?

What have I heard about courage, It is not the absence of fear but the ability to overcome it? Something like that. I'm pretty sure your spirit is adventurous enough to give new meds a shot. Good luck to you. Sometimes it is better to be lucky than good.

Mxy

Mon, Jul 27 7:11am · The Eagle in Epilepsy & Seizures

Good for you too @jakedduck1! 44 years? Wow! Patience, perseverance and follow through. I am glad you are here helping us now.

Sun, Jul 26 8:22pm · What is your experience with Lamotrigine? Side effects? in Epilepsy & Seizures

@maggiek

Hi Maggie, you are doing fine. I am fairly new to this also. No worries. I just start typing and do my best, if it doesn't go to the right place I figure people don't have to read it.

Oh my gosh, you don't know what type of seizures you have? Finally someone that speaks my language. When I first started reading these posts I was wondering if I was talking to doctors. Eventually I realized no, they are just more interested than I am. For the most part I have been well controlled throughout my life so I spent my time in other areas. Recently that has changed so I am engaging a bit more.

The two meds I am taking are relatively new to the market and expensive. I am not interested in brain surgery until I have exhausted all of the other options. I have never seen an epilepsy specialist nor been to an epilepsy center. That is all about to change.

Good talking to you.

Mxy

Sun, Jul 26 9:29am · The Eagle in Epilepsy & Seizures

@isittll

Just tell me it can't be done and stand back. And don't ever forget, we are prophets, we have superpowers!

Mxy

Sun, Jul 26 9:21am · What is your experience with Lamotrigine? Side effects? in Epilepsy & Seizures

@maggiek

I am not sure if you are talking to me or not. If so, I am on Vimpat and a couple of days ago started Briviact. I was having a lot of complex partial seizures on Vimpat alone. It is too early to tell how the Briviact will do. Everything works for me for 3 weeks or so then my body seems to adjust and we are back to having seizures.

I have complex partial and tonic clonic seizures.

Mxy