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Newly diagnosed

Wed, 11/13/2013 - 13:32
Hi, I've just been diagnosed with absence seizures at age 28. I've been struggling with the diagnosis. To begin with I thought, hay it's just a name and it will get better with meds so it's a positive thing, but now for some reason I can't accept this. My meds don't seem to be working so far and all I keep thinking is why me, why do I have to have this, I don't want it. I find myself crying and depressed at the idea of having to take medication for the rest of my life and the fear of having seizures in front of people. My husband is very supportive but my family don't seem to understand it and I feel very alone at the moment. I just can't accept that I have this. It's also crossed my mind that if it had been spotted before then maybe it wouldn't have been so bad and easier controlled although I know this isn't the best thing to do. I'm sorry for sounding like I'm just moaning but just needed to vent. Just don't see a way of being able to accept this at the moment. I'm keeping a daily diary on here plus down on paper but my memory is rubbish and often forget if I have had a seizure or not plus half the time I don't even know if I'd had one at all. I am very grateful for this website though and am finding that gaining information is helping. If anyone can relate to what I'm going through then I would really appreciate some tips on how to accept it and how to learn to live with it as I know that's what I have to do. Thank you Andrea.

Comments

Re: Newly diagnosed

Submitted by mereloaded on Thu, 2013-11-14 - 09:59
Write your question wn or your neuro to make the best out of your visit. Do not be afraid to ask, it is thir job. You don't like the medication, tell them. You want an MRI, ask for it! You want to know how this will affect your family plans, ask! This site is a wealth f information. I come here for answers, inspiration and to find other people with similar concerns. I ve been very lucky and have found other other parents to communicate with and share tips, updates etc. people here are very cool. Last, you are the same person as before the diagnosis! Dream on

Re: Newly diagnosed

Submitted by just_joe on Wed, 2013-11-13 - 16:15

You are 28 which is great. You have been diagnosed with absence seizures. Which is also better than other types of seizures.

As for epilepsy. It has a stigma and it has been around for many years.

You posted Newly Diagnosed but you did not say how long ago. If it was withing the last few weeks your body is still adjusting to the medication. Understand that medications will need to be increased or decreased or coupled with another medication before they can get you where the medications control your seizures.

You are not the only person that says "why me" I asked that many times. One of those times I got an answer "Why not you".

If you truely look at what epilepsy is it is a handicap which can not be seen. Go to one of the biggest intersections in major cities and look at everybody crossing the street. You will see hndreds some with canes others in wheel chairs some wearing glasses others with hearing aids all of those are also handicaps. Those can be seen. In that same number of people there were also many people who have handicaps which can not be seen epilepsy is one of those. Diabeties is another and don't forget heart disease or cancer. I know that many of those also asked "Why Me" We all have things we are to deal with in our life and we were never promised the road we take will be smoth sailing. The roads have bumps and the sea has waves.

There are people here that will listen to you and try and help you deal with your issues. We look at your post and think back to what we said or did or medications we have taken and any other issue that we had trouble dealing with. At times I say what has happened to me during my life and dealing with epilepsy. You see there are many people who have epilepsy who have their seizures controlled. There are others who are seizure free. My cousin is one. She had seizures when she was a teen. I am not sure for how long but right now she is married drives and is happy doing what she wanted. She also finished schooling and is a PTA (physical hterop[otist associate).

As for it not being spotted it could be difficult for some to spot. I know as they say Been There Done That. I have Pettie Mal, Grande Mal and focal motor epilepsy. There are many types of seizures that will land in those and absence seizure is one of them. Back when I was in 6th grade I was being written up almost weekly for day dreaming. Yet I was one of the top 5 people in class when it came to pop quizes or tests. I can say many of those day dreams to the teacher could and probably were absence seizures. 

Be glad that doctors have specialized and in their specializing it made drug companies speacialize with the mediactions they are making. Now medications are dealing with types of seizures rather ten claming down the entire nervious system they hit certain areas which means you are not all druged up an walking around like a zobie.

I was in denial but I also wanted to prove to people that I could do anything other people could do and I set the bar up higher for me than I did my brother or friends. In other words I made myself work harder to prove someone with epilepsy could do what other people could do.

I would suggest you go to the top of this page and go to the diary watch the video and use the diary. If you do it can help your doctor because the added information could help him with different procedures medications or the coupling of another medication. One of the first questions your neuro will ask is "How many seizures have you had" Well the diary will have that. You can also give your doctor permission to bring it up to view the graphs and other things it has.

My neuro added vimpat to my keppra and I used it and still may since we increased the dosage.

The medications that are being used not only reduce the number of seizures but they also reduce the time in the seizure and the time it takes to get back to normal.

I hope you get answers to your questions and understand that many of us have had many of the same questions and many more. Do come back and tell us whats happening and how you are doing dealing and living with epilepsy.

 Joe

You are 28 which is great. You have been diagnosed with absence seizures. Which is also better than other types of seizures.

As for epilepsy. It has a stigma and it has been around for many years.

You posted Newly Diagnosed but you did not say how long ago. If it was withing the last few weeks your body is still adjusting to the medication. Understand that medications will need to be increased or decreased or coupled with another medication before they can get you where the medications control your seizures.

You are not the only person that says "why me" I asked that many times. One of those times I got an answer "Why not you".

If you truely look at what epilepsy is it is a handicap which can not be seen. Go to one of the biggest intersections in major cities and look at everybody crossing the street. You will see hndreds some with canes others in wheel chairs some wearing glasses others with hearing aids all of those are also handicaps. Those can be seen. In that same number of people there were also many people who have handicaps which can not be seen epilepsy is one of those. Diabeties is another and don't forget heart disease or cancer. I know that many of those also asked "Why Me" We all have things we are to deal with in our life and we were never promised the road we take will be smoth sailing. The roads have bumps and the sea has waves.

There are people here that will listen to you and try and help you deal with your issues. We look at your post and think back to what we said or did or medications we have taken and any other issue that we had trouble dealing with. At times I say what has happened to me during my life and dealing with epilepsy. You see there are many people who have epilepsy who have their seizures controlled. There are others who are seizure free. My cousin is one. She had seizures when she was a teen. I am not sure for how long but right now she is married drives and is happy doing what she wanted. She also finished schooling and is a PTA (physical hterop[otist associate).

As for it not being spotted it could be difficult for some to spot. I know as they say Been There Done That. I have Pettie Mal, Grande Mal and focal motor epilepsy. There are many types of seizures that will land in those and absence seizure is one of them. Back when I was in 6th grade I was being written up almost weekly for day dreaming. Yet I was one of the top 5 people in class when it came to pop quizes or tests. I can say many of those day dreams to the teacher could and probably were absence seizures. 

Be glad that doctors have specialized and in their specializing it made drug companies speacialize with the mediactions they are making. Now medications are dealing with types of seizures rather ten claming down the entire nervious system they hit certain areas which means you are not all druged up an walking around like a zobie.

I was in denial but I also wanted to prove to people that I could do anything other people could do and I set the bar up higher for me than I did my brother or friends. In other words I made myself work harder to prove someone with epilepsy could do what other people could do.

I would suggest you go to the top of this page and go to the diary watch the video and use the diary. If you do it can help your doctor because the added information could help him with different procedures medications or the coupling of another medication. One of the first questions your neuro will ask is "How many seizures have you had" Well the diary will have that. You can also give your doctor permission to bring it up to view the graphs and other things it has.

My neuro added vimpat to my keppra and I used it and still may since we increased the dosage.

The medications that are being used not only reduce the number of seizures but they also reduce the time in the seizure and the time it takes to get back to normal.

I hope you get answers to your questions and understand that many of us have had many of the same questions and many more. Do come back and tell us whats happening and how you are doing dealing and living with epilepsy.

 Joe

Re: Newly diagnosed

Submitted by Andrea_McBride on Wed, 2013-11-13 - 16:28
Thank you for your reply Joe. Good question " Why not me " and I honestly couldn't answer that. I was diagnosed a month ago and put on lamotrigine as my husband and I were planning on starting a family in the next few years and was told by my neuro that this was the best one to be on. Which is another concern of mine and something we may have to give more thought on now.

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