My Epileptologist / Neurologist ...

[Bernard]

Voting is anonymous. Express your opinon and the more members who vote, the more interesting the results.

 

[brain]

I haven't figured out my current
Epileptologist yet. After having a unknown type of
seizure at an unknown time whereas my son found
me on the floor which I was confused, hurt, in a daze,
and I thought the dining table fell on me, but it was
the very heavy chair that was on my back and legs
and how it got there is beyond me, and I thought my
glasses were broken, and I did cry out for "help"
very weakly.

All I can remember was wrapping everything up for
the night just before or around 11:00 PM Sunday,
and since my son was out with his friends, he did
not arrive home until just a little after 1:00 AM, as
he had his laundry in the dryer and he found me on
the floor. At first he thought I fell, but after hearing
my speech being slurred, he knew I had a seizure,
and I told my son.

My son told my Epi what I had said, and he really wanted
him to be my Epi, and that I was giving up my driver's
license altogether and that he was a good Epi. And he
said that he said "OK". My son went on to tell me I could
not even answer my own Epi's simple question and the
both of them could tell I had a seizure earlier and like
my son said, was still in the state of confusion. My
son had to lead me to bed and I thought I was in bed.

 

[Birdbomb]

You better take things slow today! This past week has been so stressfull that it's no wonder this has happened, and you know it may be something residual from the accident.
((((hugs)))))

 

[BIGMAN131307]

Over the years I have had atleast 6 different Neurologists. The first one was good. He listened to me and my family. But I had to change to another after a few years because he was a pediatric Neurologist. Several years later that Neurologist has been sent on a "State Vacation". If you don't understand what that means, just think about it. If you still don't understand send me a PM and I'll explain it to you.

The next few Neurologists I had weren't good at all. All of them tried to convince me and my family that I only had migraines. What a crock. During
1997-2001 I was off all Seizure meds. I had more seizures then before. Well
in 2001 one I had two Gran-Mal Seizures. The first was on a Monday, the next was Wednesday. That is when I got a new Neurologist. He was the best Neurologist I ever had. He tried his hardest to get my Seizures under control. Everytime I went to see him, he listen to me first. Using my information he tried formulating a course of action. He suggested the VNS, but understood I wasn't ready for it yet. So he tried other meds. After four
years, he got another job in another city. He is too far for me to keep as my Neurologist. So I got another one. This Neurologist isn't too bad, but is a little pushy sometimes. I've had him for close to two years now. He has suggested surgery & VNS. I decided to check to see if I was a possible surgery canidate. According to the tests, I am. But a few of the test reports
are three years old from my previous Neurologist. I told him that before I have any surgery, that I want to have new tests done first. He told me that
they weren't needed, but if the Neurosurgeon says I need the updated tests
then I'll get them. The Neurosurgeon told me that he thinks I should get them. Unfortunately some PA stuck her nose into my business and messed things up. Now both my Neurologist & the Neurosurgeon are saying I don't need updated tests. Now I am feeling ticked off. I was really considering the surgery. No updated tests, then no surgery. It's my head they would be cutting, so it's my choice. My family is already worried, and this situation is helping matters.

We all know the stories about people having surgery and getting mixed results. Some people are not worried, have all the needed (updated) tests, the surgeons are well informed in what needs to be done. The surgery gets performed, and the person comes out good as new. While the opposite happens the the patient who is worried that not all the needed tests have been done. Which ends up to compications occuring during or after surgery.

I'd really like to get on with my life, but my seizures are holding me back. Once I was going to join the NAVY. But other issues kept me out. They said
I has to heavy for my height. BS, if they were talking to me in person, it would've been a different story. Well if I get my seizures eliminated, or atleast well controlled I can pursue another career. I'd like to become a firefighter. I know that I can, because another person who had similar seizures as me has done it. That person had the surgery.

Any possible suggestions as to what to due? Is there anyone who's in a similar situation as me? Reply here, of send me a PM.

 

[Bernard]

Hi bigman, there are a bunch of treatment options listed in the chart linked from my signature. I'd suggest trying some of the diets listed there and keeping a detailed seizure diary to identify your major seizure triggers and then eliminate them from your life as best you can.

 

[BIGMAN131307]

Hi bigman, there are a bunch of treatment options listed in the chart linked from my signature. I'd suggest trying some of the diets listed there and keeping a detailed seizure diary to identify your major seizure triggers and then eliminate them from your life as best you can.

Thx, but those diets don't work for me. The "Ketogenic Diet" is primarily for children anyways. I asked one of my past Neurologists about it before. He explained all the benefits/problems that came with it. There are too many problems with diets like that.

As for some of my triggers, they are "stress", heat, cool breezes. The first two are pretty easy to understand, the third needs to be clarified some. I can be sitting at my computer, and suddenly a cool breeze blows in. It causes a minor chill up my spine. Which often triggers a seizure then or sometime afterwards.

 

[Bernard]

Have you looked into the modified Atkin's or low glycemic diets? They are easier to maintain than the ketogenic diet and suitable for adults.

those diets dont work for me

You seem pretty quick to dismiss them. Have you tried them or is the idea of changing your eating habits unpalatable?

 

[BIGMAN131307]

Have you looked into the modified Atkin's or low glycemic diets? They are easier to maintain than the ketogenic diet and suitable for adults.You seem pretty quick to dismiss them. Have you tried them or is the idea of changing your eating habits unpalatable?

I've tried a couple of the diets before. Only one "somewhat" worked a little.
The "Blood Type Diet", it helped me to loose some weight. But I was hoping it
might also help me have less seizures. There was no change seizure wise. But I had to stop the BTD because it cost too much to stick with. If the results were better, then I might have stuck it out longer than three months.

I'm willing to try just about anything. It just has to be cost effective, and work
well.

 

[Bernard]

I've never run across any studies linking the Blood Type Diet to seizure control / epilepsy, but the ones mentioned in my chart have all been studied with successful results.

 

[brain]

Just out of fairness, I had 2 Neurologists
who were this:

1. One was a Neuro who performed a lot of my EEG Runs
but was never my Neuro, but watched me like a hawk,
but he did not specialize in Epilepsy / Seizure Disorders,
however, he did have to deal with me in the ER - when he
was "On-Call", and he was the one responsible in getting
me started on Dilantin (Phenytoin), and it did the trick!
He's retired, and my son and I adored him, however -
my ex-husband hated him!

2. I had a Neurologist, a young fellow, but he wasn't
a referred Neuro at all. I was at a church, helping with
my son's Christian School with the Rummage Sale Stuff
set up, and *BAM* was hit with Grand Mal (Tonic Clonic)
and they called an Ambulance and was sent to the closest
Hospital, and in the ER, that Neurologist just happened to
be there as his patient was there. My Son's School teacher
brought my son and she went with him, and this Neuro
knew exactly what to do on the dot (at that time I was
on no Meds as my "ex" had changed HMO's again) and he
gave my son's Teacher instructions that he was keeping me
there, and had me admitted and hooked up on the Neuro
floor and he was so quick and danged GOOD! My son
adored him! Once the meds were all adjusted perfectly,
and he knew exactly how to titrate all the meds in order,
I was actually out of the hospital in 4 days! Was nearly
seizure-free for almost 5 years.

Then 2 weird things happened at same time:
1) My ex changed HMO's where I would loose this Neuro.
2) My Neuro's father passed away where he just QUIT
Neurology altogether suddenly. His Nurse phoned everyone
to give the notice. And he just packed his belongings and
moved up North. I did see him momentarily and he looked
like he aged 10-15 years. I tried to obtain my records, but
no one knew where they were or went. All the staff that
were there, all went elsewhere, and another Neurologist
was very quick to take over the office.

That Neurologist was precious. It was a shame he quit
like that, he was so good and knew what he was doing.
He was beyond brilliant. My son talks about this Neuro
and the other Neuro far more than all of the Neuros I've
had, and he misses them both, and I do too.

I really believe if his father never passed away like that,
he would very much would still be my Neuro today. I
perceive he was a "Level 3/4" caliber type Neurologist or
Epileptologist.

I am only reporting this with all fairness, even though
it's been years ago.

 

[Elisa]

The Epi. I have now is the best one I have ever had. She is the same age as me ( her birthday was 3 months before mine) If I need anything I call and she chats with me. She trust me to made my own decisions, it's my body and I know best. I'm known to self medicate. I'll go in and she'll say " o.k Elisa what are you taking now? and how's it working?"
Now, my worst and most hated epi. was, Linda Brown, she would have no part of the self medicating thing. Pissed her off to no end. Believe it or not it's Bird Bomb's doc. now. Is that funny or what! She moved across the country to find Donna.

 

[Birdbomb]

Yeap! And I took myself off dilantin while under her care. She has a different attitude with me than she did you.fft:

I just saw her a few months ago to get approval of this one particually nasty medicatiom for my RA. Told her even if she didn't approve, I was going to take it anyway. (Unless you live with the kind of pain RA causes, you won't understand my reasoning,) but she just said if there were anymore sz, just come back.:tup:

Then sprinkled holy water on me, kissed my feet and blessed me.:star:

Well, maybe not all that, but she understood my pov.

She was your worst but has been my best. What does that say about Las Vegas doctors?

Picking an epi is a crap shoot!

 

[POSITIVEPERSON]

When I dropped my insurance and moved to the NW I stopped going to the epileptolgist.
I was on on my last meds and when they gave out I went to the homeopathy Dr and never looked back. Now I think I should have been more open minded before and stuck with the homeopathy dr when I first tried . BUt I wasn't desperate enough!!!!! Same with the Gard diet couldn't stick with it first time around,wasn't ready .

In all honesty my first nuero was the best one I ever had . All the epilpetolgists after were all full of themselves!!!!!

Riva

 

[brain]

All the epilpetolgists after were all full of themselves!!!!!

Riva

LOL @ Riva.

Well not are, I know a
couple of sweeties!
:lol:

 

[RobinN]

Rebecca's
Neurologist A - after two seizures in one day, said hormones and diet could not be a contributing factor in her seizures, and put her on AEDs. When she had vision problems, was sure it was not the drug, yet when she stopped taking it the vision issues went away after a few weeks.

GYN - a wonderful man though out of network, and extremely expensive. He saw her on a moments notice. Took tests no other doctor has even suggested. Toxins, hormone levels, vit and mineral levels. Saw areas of concern, and suggested that I address those. He put me in touch with a brain specialist in NY, with whom I had a phone consult. Very enlightening, and I learned nothing that I hadn't found on my internet search, though it confirmed that I had a good grasp on the situation, and that I "could" believe what I was finding on the internet.

Pediatrician - was cancelled after I wrote a letter when in tears. I had been told that perhaps my daughter was having TIAs, the wait to see a specialist was 2 months, faxes were taking 4 days to get from one side of the city to another. I sat down and expressed my concern from one mother to another, and within 2 days I had a letter of cancellation, stating lack of communication as the cause.

Neurologist B - after a 20 min "interview" by her assistant MD, decided that it was a type of conversion disorder, provided us with a VEEG, yet did not suggest it to coincide with her menstrual cycle, during which most of her seizures occurred, and it was negative. Suggested that Neurologist A could not read an EEG, and perhaps their equipment was not as good. Suggested that GYN was a over paid and not worthy of his title. We were told AEDs were not a good option. Said giving progesterone to a child this age was terrible thing to do. Suggested aftercare to include no ice skating (her passion) and to see a psychologist. Classified the episodes as PNES

Pediatrician 2 - was very willing to help find an answer. He was the first doctor willing to lay out all of the blood tests and look at the discrepancies between each. Waited a month for an appt., and was canceled the day before. Pediatrician 1 was not willing to let Pediatrician 2 see me. (They were in the same network, but different cities).

Pediatrician 3 - still in the same network, but for some reason we are able to see her. She is nice, cautious, we are getting to know each other. She has been willing to fight for treatment. Has been able to get us an out of network Neuro who was specializing in hormonal seizures. She is the wife of a biology teacher at Rebecca's school. I think I have been just as cautious as she.

Neurologist A - went back to him when seizures continued at the advice of Pediatrician 3, and he prescribed a new AED. He had no information on Catamenial Seizures, did not even know how and why they occur. Suggested I see an Endocrinologist or GYN. Phone calls were not returned on a regular time frame. He was rude on occasion when called off hours during an emergency. I was called 4 times to explain the charges for a letter I needed to supply the High School with, and yet when called to express concern about 5 seizures in one week, I did not receive a call back, and he did not even have a note in her file.

Endo - did not know anything about Catamenial Seizures. He thanked me for teaching him. His English was extremely difficult to understand (from So. Africa I believe), nice guy but I really am not qualified to "teach" anyone about this disorder.

Neurologist C - understands hormonal seizures and yet made it quite clear she is not a hormonal expert. She is willing to prescribe natural bio-identical progesterone, however she has her prescription pad ready to fill out. Prescribed one drug that caused severe body ache, fever, and sore throat. That was discontinued, and has prescribed a version of the first AED. Curious if the vision loss will occur again. She does call back within 24 hrs. which is a good thing. She is willing to "wait" while I explain the reason for searching for other therapies, and yet I am not quite sure if she is listening. She is a young mother with twins, and I am sure she is lacking sleep, and time. She is interested in my opinion, but my instincts are this was taught in med school, in the bedside manners class.
She is the best I have met so far. I continue to research, observe and learn on my own, because no one is going to take the time like I will.

 

[Bernard]

That's amazing, unfortunate and enlightening Robin. I've read people exclaming the virtues of epileptologists over neurologists, but I think your post really highlights the potential deficiencies of neurologists for guiding patients to a correct diagnosis and treatment options for epilepsy.

For Stacy's part (at least as long as I have known her), her GP has been more helpful in really helping her get to the root of her condition than any of the neurologists she has seen IMO.

 

[RobinN]

I use to have such faith in the medical profession. Perhaps it has always been like this, and I am just getting a taste of it. Nurses, I must say, are the cream of the crop. I agree with you too. Most GPs are more careing and insightful than many neurologists.

 

[CuHead]

My wife and I have lost much faith in doctors. We were Very Lucky to find one endocrinologist who helped us (at Georgetown University Hospital).

I thank God she saw us, because the GP would not give us a 'recommendation'.

As I understand it, epileptologists/neurologists prescribe mainly 'for the brain'. My wife and I still need to find a specialist who can help find a cause.

 

[RobinN]

I am thinking Cuhead - Now I very could be wrong....
but... it seems that those that are most successful in finding the cause are doing the digging themselves these days. Or maybe it is more of a 70/30 relationship.

 

[Bernard]

There are lots of folks who are perfectly happy with their doctors. There are also very good doctors who do go the extra mile to help out their patients.

One thing I believe is true though - the squeeky wheel gets the grease. If you are content to experiment with AED coctails without asking questions or being proactive, there isn't much incentive for a doctor to spend extra time on your case.