Newbie

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

brianna

New
Messages
4
Reaction score
0
Points
0
I was diagnosed with seizures when I was 5 years old. I would just collapse. It happened three times and it was verified by eeg. I was put on Dilantin for approx. 3 years and my GP weaned me off the medication and told my mom that I had probably out grew them. Fast forward to 2001, about three weeks after the birth of our daughter and almost 28 years later, my husband and I are driving around town and I started talking to him about how it would be nice to have another child and how I had always wanted a little girl, since we already had at the time an 8 year old son. He looked at me really funny and said, we just had another baby. I started crying , because for the life of me I could not remember being pregnant with her or having her, even though she was in the backseat of the car. My doctor refered my to a neurologist and he told me it was post partum depression. I disagreed and said I had ppd and this was nothing like that, and it was gone almost as quickly as it came on. These same episodes would happen maybe once or twice a year, I had several eeg's and everything came back normal. This year I started having heart problems (low pulse rate) and was placed on a 30 holter moniter I woke up in the middle of the night because I was sick to my stomach and went into the bathroom, on my way back to bed, I yelled out my husbands name and I started to collapse to the floor. My monitor showed my pulse rate at 32, he was able to press the button to record it and called 911. I was admitted to the hospital and the next day was taken by ambulance to another hospital for a cardiac ablation to fix the tachycardia they stated I was having during the night. The next few days though, my sense of smell was heightened and food had no taste to it, which is something I experience after I have these episodes and this lasts for at least 2 days. When I get back to work I am finding that I am having more of these almost out of body moments and I speak to my GP again and she refers me to another neurologist and he puts my on medication (I have been on 4 different ones so far) and then after a month I start having episodes again, then another medication, so on and so on. He does not think it is seizures, but more of a psychological issue, since I do not have a family history of seizures? At my urging he has scheduled an appointment for me to go into Inpatient EEG monitoring starting Tuesday. I am having a hard time at work. At the urging of my boss who has been wonderful about all my time off, I have filed FMLA paperwork, but was very hard to get the doctor to sign off on it. He stated that since I didn't work around heavy machinery the types of episodes I am having should not interfere with my work. My work is very fast paced and meticulous and very little room for error and tried to explain that to him and he agreed to the time off for the test and one day a month. I have been ready the posts on here the last couple of weeks and have been amazed thinking, of my gosh, that is me!!

Thank you for reading
 
Hi Brianna,

Have you told this dr. about your diagnosis of epilepsy when you were young? Since you've had a history of it and there is no family history, does the dr. know about this?
There was no family history in my case either, but my seizures kept coming back, so that psychological issue is a bunch of crap. I'm gald to hear you will be having the Inpatient EEG monitoring so maybe they can find something. Keeping my fingers crossed.
 
My mom and I both told him about the diagnosis as a child, but he keeps going back to a psychological issue, which I don't quite understand. The only thing I can think of is 7 years ago my step father committed suicide and a lot of other stuff was really stressful in my life at that time and I asked my GP for an antidepressant and got back on track after 6 months and found I no longer needed the medication, but on my medical chart it lists now lists that I have had depression in the past. We live in a fairly small and I have lived here most of my life and not quite sure why he can not access my medical records from the time when I first started having seizures when I was a child. There is a lot that I am still trying to figure out about this. With my episodes becoming more and more frequent (once a week, sometimes I can go two weeks), My Neuro only works 4 hours a day and the rest of his time is spent doing special projects for the hospital. We have two other Neuros on staff, but have been told by my GP and Neuro that once you are established with a Dr you can not be switched to a different one. The closest Neuro is 40 miles away and is not a Preferred Provider for my insurance, and I would not want to drive that far from home. When I have an episode, or shaky, dizziness should I let his nurse know about it, or just keep a journal until I see him again, which is scheduled in December. When I call to tell her about episodes, either I don't get a returned call, or I do get a call and asked if I have been around anyone who has had the flu and they seem very iritated that I have called them. They had me on Keppra three months ago and when it started not to work they added Lamicatal and after a few days on the Lamictal, I developed a small rash, jerkyness, dizziness and slurring of my speach. He immediatley took me off and two days later the nurse called and said the Dr. wanted me to start taking it again that it was probably an anxiety attack. I went off all my meds (I know very stupid to do now) and the second day I was having episodes every half hour or so. My husband drove me to the hospital where I am having the study done Tuesday, and they put my on Depakote and diagnosed me in the ER with Complex Partial Seizures. They also told me to call his office the next day to get a prescription for the Depakote. He balked, but finally agreed to. The Keppra I was on was a nightmare in itself. I did not realize what a raving B**** I had become, until it got out of my system. Thank you
 
Hi Brianna,

I'm so sorry to learn of your ordeal. Is there any way you can see the other neuro? Or is there another clinic/doctor's office/hospital you could go to?

Stacey
 
My inpatient EEG starts Tuesday and at that time I will ask them if they have a Neuro they can recommend. It is further from where I live, but my mom has already said she wants me to see someone else and she will take me. I just feel like I am loosing a part of my independence and I think that is why I am having such a hard time with this. I am finding that my job is getting harder to do, I am making more mistakes and Friday I may have made a job ending mistake (will find out week from tomorrow when I go back). I am trying to be positive though. Hubby and I were talking last night about how it would give me time to see a Neuro on their schedule, and maybe go back to college and into another field of study.

Thank you
 
Hi, Brianna, and welcome!

Your doc that won't sign off on FMLA - he doesn't understand seizures and how they affect people. It isn't just a few minutes out of your day - it wrecks at least the WHOLE day, with confusion, exhaustion, etc. or whatever your postictal symptoms are. Stacey is right - you need to see another doc.

I'm so glad you found us here. This place was a lifesaver for me, too. I thought I was all alone in my seizures. In here, lots of people just like me, with great advice and insights!

Hang in there. All this DOES get better.

P.S. If they caught your seizures on an EEG chances are it's not psychological. Please see an epi - a seizure specialist - to sort it all out.
 
Hi Brianna -
The roller coaster of our medical system is certainly frustrating. I know that from personal experience. It is not me that has seizures, but my teenage daughter does.
She began having seizures at the age of 14. She is now 18.

I learned that her doctors did not want me to call after each seizure. I just kept a journal, and still do, though I don't have to write much in it these days. The journal taught me more than her doctors did. I was able to connect the dots, and realized what some of her triggers are and health of body organs that need to be improved. I learned how health of her GI system can cause seizures and psychological problems. Other symptoms that she has had over her short lifetime also played in the research to find ways to help her.

Now she is med free. We have made improvements to her daily nutrition which has improved her seizure activity. Positive results all around. Not a quick fix, but one that is improving the overall quality of her life.
 
Back
Top Bottom