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what's wrong with me and why can't I find a good doctor???

I have deleted this post because I am tierd of people telling me to just accept the fact that I have epilepy! My problem is not acceptance. My problem is that I can't find a competant dr. After doing my own research I feel that I very well may have E. HOWEVER. My previous drs all said so based on NOTHING!!!! Which as a medical professional is completely irresponsible. They NEVER looked at test results... or even looked into my history. My first three drs didn't know anything about my family. ALL of them made their choice based on me having ONE seizure. ONE SEIZURE does not mean epilepsy! I have found a few friends on here... and some support... so thank you to those people. In the future... if you answer my posts... I would greatly appreciate you reading the entire post, as all of the above was stated previously.

Comments

Eclampsia only happens during pregnancy. So, you can rule that one out.  However, there IS a significant overlap between migraines AND epilepsy and that might be what you're facing...

But first, let's find you a doc.  Here are some neuros recommended by eforum members based upon positive personal experiences:

Arizona -- Dr. David Labiner, University of Arizona, AZ

North Carolina

Dr. John DeToledo, Wake Forest Medical Center, NC

Dr. Laura Jozewicz, Raleigh, NC

Dr. James Parrott, Neuroscience and Spine Institute, Charlotte, NC

Dr. Sheila Smalls, Forest City, NC

And here are some of your diagnostic testing options: 

EEG (Electroencephalogram) – is used by a neurologist to determine whether there are any irregular electrical activities occurring in the brain which may produce seizures. It can help identify the location, severity, and type of seizure disorder. An abnormal EEG does not diagnose epilepsy nor does a normal EEG reading exclude it.

Video EEG Monitoring – is a prolonged simultaneous recording of the patient’s behavior along with the EEG. Seeing EEG and video data at the same time permits precise correlation between seizure activity in the brain and the patient’s behavior during seizures.

Video-EEG can be vital in the diagnosis of epilepsy and epileptic seizures. It allows the doctor to determine:

Whether events with unusual features are epileptic seizures…
The type of epileptic seizure, and…
The region of the brain from which the seizures arise.

Continuous Video EEG Monitoring – studies the brain waves over time with a patient staying in a special unit for at least 24 hours. Antiepileptic medication is stopped for the duration of this test, since the objective is for seizures to occur so the abnormal brain waves they produce can be recorded.

A video camera connected to the EEG provides constant monitoring, enabling the medical team to pinpoint the area where a seizure occurs and track the patient’s physiological response to the seizure. Continuous monitoring can also help distinguish between epilepsy and other conditions. It can characterize the seizure type for more precise medication adjustments, and locate the originating area of seizures within the brain.

CAT Scan (Computerized Axial Tomography) or CT (Computed Tomography) – is an imaging technique that is a safe and non-invasive, using low radiation X-rays to create a computer-generated, three-dimensional image of the brain. It provides detailed information about the structure of the brain by using a series of X-ray beams passing through the head to create cross-sectional images of the brain.

These may reveal abnormalities (blood clots, cysts, tumors, scar tissue, etc.) in the skull or brain which may be related to seizures. It allows physicians to examine the brain, section by section, as the test is being conducted and helps to point to where a person’s seizures originate.

MRI ( Magnetic Resonance Imaging) –  offers doctors the best chance of finding the source of seizures. Because seizures can arise from scar tissue in the brain, an MRI can show scar tissue and allow doctors to determine the nature of it. The images produced from the MRI are extremely precise. The information provided is valuable in the diagnosis and treatment of individuals with epilepsy.

Functional MRI – takes images in “real time” sequence and faster than the traditional MRI. By providing information about active brain tissue function and blood delivery, it is more precise and is often used before surgery to create a “map” of the brain and indicate where language, motor, and sensory areas are located. During the scan, the patient is asked to perform certain tasks, such as tapping fingers or repeating a list of words. From the image, the neurological team can locate the exact seizure area of the brain.

PET (Positron Emission Tomography) — is a scanning technique which detects chemical and physiological changes related to metabolism. It produces 3-dimensional images of blood flow, chemical reactions and muscular activity in the body as they occur. It measures the metabolism of glucose, oxygen or other substances in the brain, allowing the neurologist to study brain functions.

By measuring areas of blood flow and metabolism, the PET scan is used to locate the site from which a seizure originates. A small amount of radioactive substance is injected into the body. When this substance reaches the brain, a computer uses the recorded signals to create images of specific brain functions.

A functional image of brain activity is important because these changes are often present before structural changes occur in tissues. The information provided by the PET scan is valuable in both the diagnosis of seizure type and the evaluation of a potential candidate for surgery. PET images are capable of detecting pathological changes long before they would be made evident by other scanning techniques.

I hope this helps.  Let us know how you do.  Phylis Feiner Johnson   www.epilepsytalk.com

 

Thank you for your response and all the info. Actually Preeclamsia does end once birth happens, but once it has become eeclamsia, it can last after birth. And seizures can occur up to 6 wks after. It doesn't happen too often, but it does happen. My Mother and aunt both had this occur. My pcp doesn't believe this was the case with me, but said that it can happen. Now I don't think thats what it was either, but I did at the time. I need to look into some of the doctors in NC. I don't think any are in my insurance plan, which means they would be very expensive. I had an eeg done today, so hopefully I'll find out something soon. I also found out from my mother that I would have episodes at night, when I was young, like absent seizures. She never knew what they were... but after reading stuff on here, we're thinking they may have been. After reading so much about epilepsy I'm thinking back to alot of times (with help of course) when different things occured, that make epilepsy a possibility.

Let me know what happens with the EEG and what the next step is...     Phylis Feiner Johnson   www.epilepsytalk.com

 

I have had epilepsy pretty much my whole life and done tons of research on the topic myself to see if I can ever be med. free. I can tell you this, epilepsy seems to be diffrent for each person, I know it may not be what youwant to hear, but seizure's can be triggered by light patterns, sounds, migrains, and stress, also lack of sleep. they can become very violent the longer they are not medicated. trust me I know, I went off my meds after not having a seizure for 7yrs. and had 2 in one day 4 1/2hrs. apart that I broke my back just from the force of my body seizing, my 14yr. old son was home alone with me during the second one while my husband was at the pharmacy trying to get the meds. filled the ER had prescribed to me. he arrived home to the ambulance being back again and my son scared to death. I would never wish that on anyone. I don't have seizures as often as you seem to think people with it do. and on meds they are controlled, the only time I had a seizure onmeds was 1yr. after I started the meds. I also have sever migrains and you get blurry vision, nausea, and ringing in your ears. they are debilitating to where I can't get out of bed. Epilepsy does not have a definate diagnosis where you can take a test and that points to the exact diagnosis, all of my test came back normal too. CT, MRI, EEG nothing showed, yet I continue to have seizures. Grand Mal. they are scary and hard to go through. sometime acceptance is the hardest part about all of this, since all of this started I have found out that I have a family history for E. my Dad's side of my family has it. while seizure's show up every few years now. my little sister had about 12 a month as a very young child we have same father but diffrent mothers and she is also 26yrs. yoounger I know don't ask. but she was on meds thru all of this. then one day they just stopped. she is now 11yrs. old and has not had one since she was 4yrs. old her mom said that they never found anything on any of her test either. this condition is somewhat of a mystery to the medical profession also. I hope you are able to come to terms  and get help good luck to you. I know myself after having my son think I could die from this I will never go off meds again. I don't want to put him thru that. I stop breathing during my seizure's and have the full body convulsions, they last for several minutes wich seems like a life time for my family having to watch. I don't remeber any of it but they say I come out of them fighting for air. and crawling on floor to get away. 

I am so glad I read this, I have been without a grand -mal for 5 years and the dr. was thinking of taking me off....I thought about it for 1 year and then on my yearly visit and another normal EEG. I decided it was not worth the chance. I will take my meds thank you very much

Crissy:

 

I have had seizures all my life.  As a result of Spinalmeningits when I was 17 months old.  I have taken meds for 46 years.  In that time  I have been to several doctors most of them did not know what was going on or did not want to deal with it. Others gave it a try but, caused more problems in addition to my seizure problem. So to answer your question The reason you can't find a good doctor is because these people after they go through medical school learning how to take care of patients in the class room the try their knowledge on people.  Remember that every doctor you see may have a family member who has epilepsy but, they have not been through this themselves.  I went through brain surgery 1 year and 4 months ago to hopefully get rid of my seizures. When I asked the doctor if I would be seizure free he said, "Only time will tell."  He also informed me that Medicine is not an exact science.  The doctors are trying to help but, they rely on their knowledge and not show true feelings of the patient when they go through their battery of tests and medications and if you fight with them they look at you like your crazy.  So here are the steps I have been doing to help me out.  I hope this helps.

 

1.  Learn everything you can about your seizures.

2.  Have fun with your past since you can't change it.

3.  Keep yourself so busy that you don't have time to even think about them.

4.  Ask the doctor to help you find the balance and if he can't help you do it yourself.

I have learned about the side effects of every medication I take and keep on top of it.  If I do not want these side effects I am doing like what the meds said.   I stop taking it.  So, I am weaning myself off my meds and I am in control of my health not the other way around.

 

I have a lot of faith and determination to get my life back once in for all.   Self Confidence goes along way.

 

Doctors give conflicting information so, when that happens do not listen to it.

 

Take control of your life and you will feel better.

 

Good luck.

Sounds like epileptic seizure, but could be caused by other things going on in the brain.  I had epilepsy and found the best treatment with an epilepsy specialist.  I looked for the doctor that performed my surgery and cured me because I knew he moved to NC.  Can't find him, he may have retired but you need to be in an epilepsy monitoring unit for complete testing, mine took about 5 days.  here is what I found for NC that looks promising - hope it helps.  Write down all of your details, a print-out of your post would be perfect and if you have any questions, write those down and leave room to right the answer you get.  Be persistant with getting to the answer it is there, bless you.

http://www.uncneurology.org

Thank you so much for your post. I have to say... it's great to have support and help! I'm looking at unc's website now!

yw, keep posting - link below under resources seems to be a good place also, go strickly for the epileptologist because if it isn't epilepsy they will rule it out - I know you are going to find the answer because God is good.

Hi! Here is my long reply for you .. ha!

So, I have migraine varient and Temporal Lobe Epilepsy. My symptoms are very different to yours, but - Epilepsy and Migraine share very common ground. My migraine and epilepsy symtoms go hand in hand.

Regarding the diagnosis .. Epilepsy is hard to see. As you mentioned, EEG's and MRI don't always show 'stuff'. Dr's generally go on witness accounts and your discription of what happens. You have one end of the specturm - I have the other. It took me 12 years of hell to get diagnosed.

Rest assured - Dr's generally don't want to tag people with Epilepsy. It's not something they will just lable you with willy nilly. Well that is generally the case. To me, it seems - your account has been clear. Clear enough for them to be 'confident'. Although the Dr's havent taken in to consideration that you are new to this. They, however, are not new to this and unfortunatly aren't fielding your questions well enough.

I have been told that if you have one generalized siezure, the chances of having another one in 3 months are generally very very high. In Australia, if you have a gerneralized/tonic colonic, you will be told not to drive for 3 months after just to be safe.

So .. I don't know. There are good Dr's out there, who should be able to talk you through this. But keep in mind, if this experience was recent - your chances of having another one in 3 months are high. 

Don't let it go though, if you feel you want to know more - look and push for more.

 

 

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Peace, Love, Mung Beans

Hi Ashlei. Though I haven't been posting in months, I've been on this forum for years. I've been busy for quite awhile.

I've had epilepsy since I was two years old and have had many, many of the kinds of seizures over the years; I've have generalized seizures, myclonic seizures, psychomotor seizures, you name it.

Over the years, too, I've have had partial seizures in the daytime, not knowing that they were seizures. Sometimes I would leave the area where I'd been working and return only to find that I didn't recognize my work area or my machine. These are known as 'jamais vu" seizures, where you know things are familiar but it's somehow unrecognizable. After a couple of minutes, I would recognize my area and my machine but in the mean time I'd feel awfully stupid wondering how I could be so scatter-brained. "How could I suddenly be so inattentive when the company likes my accuracy and my attention to detail?" I would wonder.

Sometimes I've suddenly felt "thick-tongued", like I'm not able to speak properly, yet the person I'm talking to never mentions that there is something  wrong with my speech. I've sometimes I gotten a strange feeling called "depersonalization," like I'm listening or watching someone else talk or act . Such seizures--jamais vu, deja vu, and depersonalization-- last only a few minutes. For years, I had no clue these were a form of partial seizure.

When I'd have larger seizures, they'd occur in my sleep. I'd wake up, not remembering what had happened, but would have horrible, horrible headaches. I'd be in "a fog" too, unable to remember some simple things that I should've known.

One time I was having an EEG  done and, after assuring the technician I felt fine, my spine involuntarily arched and suddenly I was sitting up, unable to lie down as I had been. It freaked the technician out as he was in training at university and I was one of the first people he had done an EEG on. I was also his first volunteer with epilepsy.

All it took for me to be suddenly sitting up involuntarily was a change in the light pattern. My eyes were closed at the time, yet my body responded. The EEG showed nothing, however. Most EEGs I've had have over the years been "normal."  

Anyway, in the time I've been here I've really never seen anyone welcome a diagnosis of epilepsy.As some of the stories point out, some people think they're "cured" of epilepsy through diet, exercise, supplements,etc. then wham! You have something happen that you can't take back.

No one else in my family has ever had seizures, not my siblings, parents, cousins, aunts, or uncles. Neither of my children have epilepsy.

 

Chrissy - my simple partials are a mixture of depersonalization and derealization. I haven't come across many people who experience DP/DR in the context of E. With me, it can hang around from minutes, to hours, to days. Sometimes I can go to bed with it and wake up with it.

I had a EEG when I had DR/DR and it came up as Epileptic activity.

 

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Peace, Love, Mung Beans

Hi Ashleigh,  my name is Channon.  I've had seizures for the past 15 years.  I've been asking the same question about who/where is a good neurologist that has the knowledge, as well as a heart.  Let me tell you my story...I had my first episode when I was 15 years old, so I was still in pediatrics.  I went to my appointments faithfully.  She was so nice, asked me questions, listened, and did EVERYTHING she could do for me, including writing a letter for a scholarship.  Then..., I was transferred over to adult medicine at 18.  I met with a neurologist, and it I just got a negative vibe.  It started getting to the point I felt like I was wasting my time...this is with all doctors!  I went through a stage when I rebelled against my parents, moved out, and lived the "I'm grown" life.  Meanwhile, I was still making the appointments, but to keep my meds filled.  I got married at 21...pregnant at 22...I had a seizure, which prompted my husband to call 911.  An appointment was set due to the seizure.  I was told that the DMV had to notified, and my license would be suspended for at least 6 months.  I asked for resources, but instead he said to get family and friends to drive me around...I was pissed!  I'm already going through hard times, and now this!?  I don't know anyone that has free time to be my chauffeur.  Anyway, from that point on, I hadn't reported any attacks.  Reason being, I'd know the cause of the attack-didn't take meds, not enough sleep, stess, etc.   Recently, that all changed...I jumped up out of my sleep late at night.  I tried to find the pediatrics neurologist, and found she had transferred to another location.  I didn't get a chance to wake my husband, so I had the seizure on my own.  I ended up on my back, and I thought I was gonna die!  If it wasn't for my positioning close to my husband and my jerking waking him...that would've been it for me.  When I came to,  my husband crying, (something I've never seen him do), I was gasping for air,  was speech was impaired, head was pounding, and my motor skills were way off.  I made the decision that I didn't care what the consequences would be...I need to go in.   I'm not too happy with the neurologist I'm seeing.  I've had an MRI and EEG, in which didn't show anything alarming.  My license has now been withdrawn due to "unfavorable paperwork".  He has made the same suggestion about family and friends...I just wish doctors were more sympathetic, and showed they cared by perhaps taking an extra step.  It seems like medication is the answer to it all, and when you try to talk to them about a problem in which you know is severe...they can't find anything, so it must be okay.  I need a doctor that treats me as they'd want to be treated

hey:) im sorry this is all happening to you, i know how confusing this is. i remember when i first was diagnosed with epilepsy. i was 13 and we still, to this day, have no idea how i got it. it was weird because i started missing my doses and skipping them which led me to have a seizure and that was my snap into reality. if i didn't take my meds then i would have a seizure. to this day it's still hard to accept that i have epilepsy and i'll be 22 in 2months. it's not easy to accept and it sure as s*** isn't easy to live with. i go to Dr. John Wooten in Raleigh. i'm not sure if you're close to there but he's an amazing dr. the first dr i went to was a COMPLETE quack. i had a seizure one time and my dad said, "why did she have the seizure" and the guy's response was, "because she has epilepsy" my dad wanted to hit him. what kind of answer is that? so we went to another dr. who was good i'll admit and he got it tolerable but this dr., i started going to him when i was 16 and i'm cleared to drive now:) that's the hardest thing about epilepsy is the driving part but as long as you're taking your meds and (you can even control seizures with diet) not stressing out toooo bad (stress brings on seizures) then you should be fine. although some cases are worse than others. i'm blessed because i know beforehand and i haven't had ANYTHING happen in over a year. the only time something happens is if i'm sick and that's because it messes with my medication levels just like in everybody else. i've been freaking out about school and how im so sick of going to a Community College how i want to go to a University or an actual college like everybody else does because it does make you feel different as if nobody understands, which to an extent, is true. i just found a scholarship for epileptics though. nobody explained to me the longer you fight it the worse off you'll be. nobody wants to accept it but if you, on any level think you might, take the meds and accept the diagnosis.the worse that could happen is itll help with the seizures.what if youre in the car driving and you have a seizure?it happens a lot. i dont mean to sound like i'm lecturing i'm just saying, i learned the hardway because i didn't want to accept the diagnosis either...it's hard but if you work with it, it gets easier. it doesnt get easy but it definitely gets easier...like a deployment. (been there too) that time away from him isnt easy but after awhile it gets easier;)

Ashley

I hope you are able to find the answers you are looking for.

Crissy,

I've read all the other posts and agree with them.  Let me say there is a lot of information that one can learn about epilepsy on this site and others as well.  I, like many of the others, have had epilepsy all my life.  But I'll admit that since I've had it "forever" - I think it is much easier for me to accept than for someone who has been recently diagnosed or has had to change their life. 

We all understand and we have all persevered.  Keep coming back and checking in.  Best to you. 

This issue recently came up with me and my dr. I am 23 have had 6 seizures (all grand mal) and was "diagnosed" when I was 21. My dr told me that one unprovoked seizure = epilepsy, but one provoked seizure does not. Obviously after my 2nd one i started taking meds and my 3rd i upped my dosage so those were unprovoked??

However my last seizure I forgot to take my morning dose of meds and was working at a wine tasting outdoors in the 90 degree heat all day on little sleep and when i told my doctor about my seizure she said this was provoked? So technically this would not qualify as a diagnoasable seizure??

This makes no sense to me considering no one else working with me that day had seizures, only I did because I have EPILEPSY-- it is so bizarre how they "diagnose" it. Your not the only one with these confusing issues, I have only seen one doctor I like and I can't see him for 2 months (rediculous). Good luck and i'll keep checking this post to see if i can gain any insight into the matter also.

 

Stephanie M :)

I, too, am very sick of my doctors.  At the TBI office, they were like "what?  seizures?"  when a common symptom of TBI (traumantic brain injury) is seizures.  I am just hoping (whilst throwing hundreds of dollars to the wind) that someday the Good Doctor Fairy will wave her wand, and I'll find the perfect professional. 

Sometimes I wonder if these doctors even went to school.

 I requested my file from on Neurologist, and was appauled to see he made the note "Keeps talking about her epilepsy journal" like it was a bad thing.  Shouldn't he be reading my entries?  What is wrong with the world?

 I have gotten to the point where I am advocating for myself, and I am in control of my healthcare.  I am in control of my medications.  I will use only medications that work (that don't cause brain-death and vaginal bleeding like Trileptal!)  I will find another doctor if unhappy with one.  I will report any unethical behavior from a doctor to the appropriate authorities (they ALL are held accountable -- look at their intro documents to you, to find out where to lodge complaints.)

I'm not sure if this is going to help you, but I really would like to say thanks for letting me vent a bit. 

I would say: go with your gut.  Yes, I'm sure we've all accepted our Epilepsy.  But if you have that bad feeling, you have to advocate for yourself.  Be your lawyer.  Be the doctor you wished you had.  Think about this creatively, and never say never.  Yes, it's possible!

 Emmie

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