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

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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

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

Submitted by Bedge on Fri, 2010-08-27 - 06:28

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.

------------------------------ Peace, Love, Mung Beans

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.

------------------------------ Peace, Love, Mung Beans

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

Submitted by Chrissyml on Mon, 2010-09-06 - 04:19

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.

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.  