a little about me

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Hello, I'm a 36 year old Native American female. I've had a seizure disorder since I was about 7 years old. I really don't know what started it but it wasn't until I was 13-14 years old that I started having gran.mal seizures. At the time, I remember waking in an IHS ER. I was transferred to a more advanced hospital, got admitted w/no observed seizures. I was discharged with an order to get an EEG and MRI done. While sitting in the waiting room, I had another gran.mal. Started in Tegretol and was well controlled. Over the years I struggled with titration when I was given generic to brand, changing to Trileptal, then Kepra, and now Lamactil. I felt Trileptal worked the best for me. In hindsight, I really enjoyed life then. Kepra was the worst, It changed me, it changed my mind. I couldn't control my emotions and anger. I got off this about a two years ago. Things have slowly gotten better but Lamactil doesn't seem to be all that effective. I've been seeing a new neurologist for two years now. He seemed genuine until I asked him to fill out some paper work from this foundation. It was an application for a scholarship. You know what really bothered me about this doctor, it was his diagnosis of having... seizure like symptoms to being epileptic then to not having epilepsy. I asked why was I told I have epilepsy. He just basically said it was for insurance purposes and payment. I told him, that's not right. He told me he cant diagnosis me with epilepsy if I have never had any tests done or been observed having a seizure. I felt helpless once again. Well, he ended up ordering another EEG and MRI. I go back this Friday to go over my journal, discuss the results of my tests and decide what to do then. One option was to get admitted to Barrows Neurological in Phoenix, into the epileptic ward. I am super scared of going through with this. I keep remembering when I had seizures in the past.... first, my face starts to move right to left, then my whole head. I try real hard to sit it out and use all my strength to keep still. Eventually, I cant breathe. At this point, I can hear myself in my mind, saying help me help me i cant breathe. But all I hear is gargeling and groaning sounds. I try to get up but my arms and legs feel like stumps. Then everything goes dark. This is when I hurt myself by falling or hitting something. thankfully, I wake up a minutes later. I usually have a massive headache. and end up in the ER, sent home with some Adivan and told to get some rest. I really hope my meds get increased at my next visit, even if its at the cost of being foggy and sleepy all the time. So back to the epilepsy ward. If I go through with it, it'll be until the summer, after I finish my spring semester. The neurologist told me this is the only way to know for sure if I have epilepsy, to see exactly what type I have, and to find out what part of my brain is in disarray. Sounds deep right... well another thing on my mind and it seems this is the best place to discuss this....Do you ever have the thought that you may never wake up again after a seizure. Does anyone else have this fear. before I started going to this new neurologist, I was content with what was going on. I have lived half way through my life. I've done more than most people my age. I've had an awesome career. and I even got over the helpless feeling of not having children. Through self talk, meditation, traditional ceremonies, I've started to change my mind set. To accepting the way things are. As the months have gone by, I've been a bit more at ease with everything. Sounds strange but in a way I'm getting to be more content once again. Well enough of me. I wonder if anyone else out there feels the way I do with my symptoms, prognosis and future treatment. It'd be nice to hear some coping strategies that are out there. Thanks for reading my story.

Comments

I was discharged with an

Submitted by just_joe on Tue, 2018-03-13 - 12:43

I was discharged with an order to get an EEG and MRI done. While sitting in the waiting room, I had another gran.mal. <<< in the ward teh testing could have been done. Them seeing your seizure was enough to prescribe medications.The testing shows where in your brain the electrical impulses are coming from that are abnormal. IE what your new neurologist say they want to see. The MRI shows the brain as it is. It could be completely normal like eveyrbody elses. but then it couls also show things like tumors or loss of cells or a cell formation that didn't grow right. It could also show scar tissue from a blow to the head. All of which an cause isues. If the EEG shows where in your brain the abnormalities came from they can then look at the MRI in those areas and see if anything is different. For me the EEG showed abnormalities in the left lobes of my brain. The MRI showed scar tissue in thos lobes. So the scar tissue is what caused my epilepsy. But if in medications the medications can stop those abnoramlities. Which is why they want you in the ward. They may want you off meds in order for them to see what they are looking for. I have been in them several times in order to get the diagnose and then to see what other procedues that might help stop my seizuresHe just basically said it was for insurance purposes and payment << he is correct in ways since there are people that have seizures that look like epileptic seizures but are not. Many people have been misdiagnosed because of this issue. Research PNES (psycogenic non epileptic seizures) He told me he cant diagnosis me with epilepsy if I have never had any tests done or been observed having a seizure. <<< did you tell him about what they observed because they saw you and prescribed meds. The medical file in that hospital might be available and it will show the information he wants without the tests.The ER sends you home with Adivan which is also called Lorazepam which is used to control seizures. It is also a rescue medication to stop seizures from clustering. I carry it with me anytime I go out of the house. I know where it is in the house and if I have one of my seizures I take it.Do you ever have the thought that you may never wake up again after a seizure. Does anyone else have this fear. before I started going to this new neurologist, I was content with what was going on. <<< you have been learning how to accept your epilepsy and seizures and go about your business and do the things you want to do. Which is what many people seem to not want to do. Yes there are some drw backs butif you use common sense and deal with it like a person that has had a heart issue and does what their doctors say to do it is nothing different. Can you tell me is you will have a seizure tomorrow?? NO and people might get hit by a car while crossing the street tomorrow.There is no guarentee that you will even wake up tomorrow. So you are learning to live your life like you want to. I learned to do that before computers were ever in homes. Research was done in libraries. There were no gadgets.If you like this neurologist then keep a good relationship with them and you can get better control of your seizures.Accepting the way things are needs to be done by all be they epileptic or anyother illnesss or disease.Joe

I was discharged with an order to get an EEG and MRI done. While sitting in the waiting room, I had another gran.mal. <<< in the ward teh testing could have been done. Them seeing your seizure was enough to prescribe medications.The testing shows where in your brain the electrical impulses are coming from  that are abnormal. IE what your new neurologist say they want to see. The MRI shows the brain as it is. It could be completely normal like eveyrbody elses. but then it couls also show things like tumors or loss of cells or a cell formation that didn't grow right. It could also show scar tissue from a blow to the head. All of which an cause isues. If the EEG shows where in your brain the abnormalities came from they can then look at the MRI in those areas and see if anything is different. For me the EEG showed abnormalities in the left lobes of my brain. The MRI showed scar tissue in thos lobes. So the scar tissue is what caused my epilepsy. But if in medications the medications can stop those abnoramlities. Which is why they want you in the ward. They may want you off meds in order for them to see what they are looking for. I have been in them several times in order to get the diagnose and then to see what other procedues that might help stop my seizuresHe just basically said it was for insurance purposes and payment << he is correct in ways since there are people that have seizures that look like epileptic seizures but are not. Many people have been misdiagnosed because of this issue. Research PNES (psycogenic non epileptic seizures) He told me he cant diagnosis me with epilepsy if I have never had any tests done or been observed having a seizure. <<< did you tell him about what they observed because they saw you and prescribed meds. The medical file in that hospital might be available and it will show the information he wants without the tests.The ER sends you home with Adivan which is also called Lorazepam which is used to control seizures. It is also a rescue medication to stop seizures from clustering. I carry it with me anytime I go out of the house. I know where it is in the house and if I have one of my seizures I take it.Do you ever have the thought that you may never wake up again after a seizure. Does anyone else have this fear. before I started going to this new neurologist, I was content with what was going on. <<< you have been learning how to accept your epilepsy and seizures and go about your business and do the things you want to do. Which is what many people seem to not want to do. Yes there are some drw backs butif you use common sense and deal with it like a person that has had a heart issue and does what their doctors say to do it is nothing different. Can you tell me is you will have a seizure tomorrow?? NO and people might get hit by a car while crossing the street tomorrow.There is no guarentee that you will even wake up tomorrow. So you are learning to live your life like you want to. I learned to do that before computers were ever in homes. Research was done in libraries. There were no gadgets.If you like this neurologist then keep a good relationship with them and you can get better control of your seizures.Accepting the way things are needs to be done by all be they epileptic or anyother illnesss or disease.Joe

I was discharged with an order to get an EEG and MRI done. While sitting in the waiting room, I had another gran.mal. <<< in the ward teh testing could have been done. Them seeing your seizure was enough to prescribe medications.The testing shows where in your brain the electrical impulses are coming from that are abnormal. IE what your new neurologist say they want to see. The MRI shows the brain as it is. It could be completely normal like eveyrbody elses. but then it couls also show things like tumors or loss of cells or a cell formation that didn't grow right. It could also show scar tissue from a blow to the head. All of which an cause isues. If the EEG shows where in your brain the abnormalities came from they can then look at the MRI in those areas and see if anything is different. For me the EEG showed abnormalities in the left lobes of my brain. The MRI showed scar tissue in thos lobes. So the scar tissue is what caused my epilepsy. But if in medications the medications can stop those abnoramlities. Which is why they want you in the ward. They may want you off meds in order for them to see what they are looking for. I have been in them several times in order to get the diagnose and then to see what other procedues that might help stop my seizuresHe just basically said it was for insurance purposes and payment << he is correct in ways since there are people that have seizures that look like epileptic seizures but are not. Many people have been misdiagnosed because of this issue. Research PNES (psycogenic non epileptic seizures) He told me he cant diagnosis me with epilepsy if I have never had any tests done or been observed having a seizure. <<< did you tell him about what they observed because they saw you and prescribed meds. The medical file in that hospital might be available and it will show the information he wants without the tests.The ER sends you home with Adivan which is also called Lorazepam which is used to control seizures. It is also a rescue medication to stop seizures from clustering. I carry it with me anytime I go out of the house. I know where it is in the house and if I have one of my seizures I take it.Do you ever have the thought that you may never wake up again after a seizure. Does anyone else have this fear. before I started going to this new neurologist, I was content with what was going on. <<< you have been learning how to accept your epilepsy and seizures and go about your business and do the things you want to do. Which is what many people seem to not want to do. Yes there are some drw backs butif you use common sense and deal with it like a person that has had a heart issue and does what their doctors say to do it is nothing different. Can you tell me is you will have a seizure tomorrow?? NO and people might get hit by a car while crossing the street tomorrow.There is no guarentee that you will even wake up tomorrow. So you are learning to live your life like you want to. I learned to do that before computers were ever in homes. Research was done in libraries. There were no gadgets.If you like this neurologist then keep a good relationship with them and you can get better control of your seizures.Accepting the way things are needs to be done by all be they epileptic or anyother illnesss or disease.Joe

Im 44 and have dealt with

Submitted by Jim HI on Tue, 2018-03-13 - 19:43

Im 44 and have dealt with Siezures on and off for 18 years. I work full time, drive, and feel most of the time things are normal. When it occurs, is when I need the skills your looking for. I'm still having a hard time with this issue after 18 years. I hide it from almost everyone i work with. Their is an exception of a few where the word got out. I have no one to talk to about this who understands. When I do talk to family about this, it turns to worry and criticism.

Hello, I thought you would be

Submitted by ann23121 on Thu, 2018-05-03 - 06:37

Hello, I thought you would be interested in trying this. I understand what you are facing. I would advice you contact the spiritual Dr. dugo on E -mail: dugo_d&yahoo.com, wattsapp.. +2348064357725. he has a spiritual power to heal you from this seizure sickness totally. Trust me, my daughter also had a similar issue 5 years ago. But she is totally free now with the help of the spiritual doctor.