Should I really trust my doctor?

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Hey everyone, I know your supposed to trust the doctors that you get, but sometimes I feel like he isn't listening to me. My first seizure was 4 days after my 20th birthday. He put me on Keppra and just kept upping the dose until he wasn't able to up the dose anymore because it's now at the max dose that anyone can take. The medicine seems to work in spurts of months, longest I have ever been able to go is 5 months, and then I have another grand mal seizure followed by many petite mal seizures over the next couple months or so. In January I had another grand mal seizure while visiting my mom at the hospital in the middle of the night which wouldn't stop so the doctors decided to put me on the vent to try to calm my brain down. I haven't had another seizure since then. Well, one that I recognize anyways since I just found out that muscle jerks and staring spells are also seizures, which I didn't know until yesterday. Anyways, I just went to my neurologist and he is just now deciding to put me on a new medication, Carbatrol, and taking me completely off the Keppra within the next month. I just feel like he didn't listen to me or even care about me up until he found out what happened in January. So should I really trust him, or should I find a new doctor? Some insight would really help me, Thanks

Comments

Hey back I read you post. You

Submitted by Anonymous on Sun, 2014-05-11 - 10:16

Hey back I read you post. You did not put some information in that might be helpful to know. I saw that your first seizure was 4 days after your birthday and you were 20. You didn't mention how old you are now. You posted that you are on the max dosage of keppra. I too am on that dosage. It does take time to get the dosage that high. The medicine seems to work in spurts of months, longest I have ever been able to go is 5 months Well, one that I recognize anyways since I just found out that muscle jerks and staring spells are also seizures, which I didn't know until yesterday. I am not saying that what is happening is all due to you. I know how doctors do their jobs. I also know a medication that works for one person may not work for the next and the same with dosages. There are triggers to watch for and yes there is an area here that can help you find those triggers. This part " visiting my mom at the hospital" has one of the biggest triggers. Stress is a trigger . In stress I am not talking about the stress from work because I had that and left it at the door when I left work I picked it back up the next day when I entered the office. I had more seizures in the last 3 months then the previous 6 months and those were due to stress. My brother was diagnosed with cancer, he had wipple surgers and they had problems several time durig the next month. So I was not able to go to california and visit him I got information from Mom and my sister in law. So yes I had a lot of stress. I would sugest yu get the My Epilepsy Diary it can be found in the get help section of this site, Watch the video because by using it and giving your doctor permission to ring it up it can help him come up with procedures amd medications along with dosages. The more information he has the better he can come up with ways to help you. I just went to my neurologist and he is just now deciding to put me on a new medication Work with your neurologist and try and give him all the informatio you can. Ask questions because those questions can help. You posted you have been on keppra and you are going to be taken off and put on another AED. Well that information means yo have been on one medication for the entire length of time you have been having seizures. I know medications work and many of them work well. I know this because I have taken most of those medications and their generics. By many I mean almost all medications. As for seizure control---- what do you consider controled??? Completely? Have you asked your neurologist what he considered controlled? There is a difference aNnd that difference needs to be discussed so your neurologist can assist you. I still have seizures which last seconds. The number of seizures I have are lower then they were but the number is still there and yes I would love to be seizure free. I also know that unless they come up with a ew medication I may not be completely seizure free. I can accept that because I have not had a convulsive seizure since 1970. I was seizure free for 3 years so we are still working on coupling my keppra with another medication and yes it has goten the seizures down from what they were with keppra alone. So there is hope and working with Doc I have better control of epile[sy and my seizures. That control has only gotten better by me asking questions and giving him all the information I can. I hope this helps and you get the assistance you need Joe

Hey back I read you post. You did not put some information in that might be helpful to know. I saw that your first seizure was 4 days after your birthday and you were 20. You didn't mention how old you are now. You posted that you are on the max dosage of keppra. I too am on that dosage. It does take time to get the dosage that high. The medicine seems to work in spurts of months, longest I have ever been able to go is 5 months      Well, one that I recognize anyways since I just found out that muscle jerks and staring spells are also seizures, which I didn't know until yesterday.     I am not saying that what is happening is all due to you. I know how doctors do their jobs. I also know a medication that works for one person may not work for the next and the same with dosages. There are triggers to watch for and yes there is an area here that can help you find those triggers. This part " visiting my mom at the hospital" has one of the biggest triggers. Stress is a trigger . In stress I am not talking about the stress from work because I had that and left it at the door when I left work I picked it back up the next day when I entered the office. I had more seizures in the last 3 months then the previous 6 months and those were due to stress. My brother was diagnosed with cancer, he had wipple surgers and they had problems several time durig the next month. So I was not able to go to california and visit him I got information from Mom and my sister in law. So yes I had a lot of stress. I would sugest yu get the My Epilepsy Diary it can be found in the get help section of this site, Watch the video because by using it and giving your doctor permission to ring it up it can help  him come up with procedures amd medications along with dosages. The more information he has the better he can come up with ways to help you.  I just went to my neurologist and he is just now deciding to put me on a new medication    Work with your neurologist and try and give him all the informatio you can. Ask questions because those questions can help. You posted you have been on keppra and you are going to be taken off and put on another AED. Well that information means yo have been on one medication for the entire length of time you have been having seizures. I know medications work and many of them work well. I know this because I have taken most of those medications and their generics. By many I mean almost all medications. As for seizure control---- what do you consider controled??? Completely? Have you asked your neurologist  what he considered controlled? There is a difference aNnd that difference needs to be discussed so your neurologist can assist you. I still have seizures which last seconds. The number of seizures I have are lower then they were but the number is still there and yes I would love to be seizure free. I also know that unless they come up with a ew medication I may not be completely seizure free. I can accept that because I have not had a convulsive seizure since 1970. I was seizure free for 3 years so we are still working on coupling my keppra with another medication and yes it has goten the seizures down from what they were with keppra alone. So there is hope and working with Doc I have better control of epile[sy and my seizures. That control has only gotten better by me asking questions and giving him all the information I can.  I hope this helps and you get the assistance you need Joe  

Hey back I read you post. You did not put some information in that might be helpful to know. I saw that your first seizure was 4 days after your birthday and you were 20. You didn't mention how old you are now. You posted that you are on the max dosage of keppra. I too am on that dosage. It does take time to get the dosage that high. The medicine seems to work in spurts of months, longest I have ever been able to go is 5 months Well, one that I recognize anyways since I just found out that muscle jerks and staring spells are also seizures, which I didn't know until yesterday. I am not saying that what is happening is all due to you. I know how doctors do their jobs. I also know a medication that works for one person may not work for the next and the same with dosages. There are triggers to watch for and yes there is an area here that can help you find those triggers. This part " visiting my mom at the hospital" has one of the biggest triggers. Stress is a trigger . In stress I am not talking about the stress from work because I had that and left it at the door when I left work I picked it back up the next day when I entered the office. I had more seizures in the last 3 months then the previous 6 months and those were due to stress. My brother was diagnosed with cancer, he had wipple surgers and they had problems several time durig the next month. So I was not able to go to california and visit him I got information from Mom and my sister in law. So yes I had a lot of stress. I would sugest yu get the My Epilepsy Diary it can be found in the get help section of this site, Watch the video because by using it and giving your doctor permission to ring it up it can help him come up with procedures amd medications along with dosages. The more information he has the better he can come up with ways to help you. I just went to my neurologist and he is just now deciding to put me on a new medication Work with your neurologist and try and give him all the informatio you can. Ask questions because those questions can help. You posted you have been on keppra and you are going to be taken off and put on another AED. Well that information means yo have been on one medication for the entire length of time you have been having seizures. I know medications work and many of them work well. I know this because I have taken most of those medications and their generics. By many I mean almost all medications. As for seizure control---- what do you consider controled??? Completely? Have you asked your neurologist what he considered controlled? There is a difference aNnd that difference needs to be discussed so your neurologist can assist you. I still have seizures which last seconds. The number of seizures I have are lower then they were but the number is still there and yes I would love to be seizure free. I also know that unless they come up with a ew medication I may not be completely seizure free. I can accept that because I have not had a convulsive seizure since 1970. I was seizure free for 3 years so we are still working on coupling my keppra with another medication and yes it has goten the seizures down from what they were with keppra alone. So there is hope and working with Doc I have better control of epile[sy and my seizures. That control has only gotten better by me asking questions and giving him all the information I can. I hope this helps and you get the assistance you need Joe

If you've seen this doc for a

Submitted by Head_Games_Girl on Mon, 2014-07-28 - 05:28

If you've seen this doc for a certain number of years and feel he isn't doing anything to help then search for someone else. Make sure the doctor you search for is an epilepsy specialist though. I saw a doc for quite a few years and when he told me I was cured and no longer had E anymore. I was shocked! If I no longer had a seizure disorder why was he giving me meds? I say trust ur instinct because it's your body.