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I am 26 years old, female, and married. I was diagnosed with absence seizures when I was 10, and "grand mal" seizures when I was 12. For many years I was on a combination of Zonegran and Zarontin. When I started taking these medications, I went from being a happy, healthy, social, smart, and athletic child to a very unhealthy, tired, antisocial, unextraordinary child. My parents figured this change was due to puberty. At 16, my neurologist took me off the medicines to see if I had outgrown the seizures. I did a complete 180 back to my old self. But the seizures came back 6 months later, so I had to go back on the medicine. The suddenness of going back to the full doses of medicines shocked me; I literally could not stay awake in school. I was miserable, moreso than before because I had tasted freedom. My (new) doctor suggested trying a new medicine- Lamictal. As I was slowly switching from the old medicines to the Lamictal, I developed Steven's Johnson Syndrome and was hospitalized. I had to go back on the old medicine, but I stayed on a lower dose, which gave me a little relief from the side effects. I had always been very antisocial, with very few friends, but when I went to college I was forced to interact more with other people, particularly my roommates. The exercise from walking around campus and the close interaction with others my age opened my eyes to just how different I was, how not happy I was. I don't want to say unhappy, because it wasn't an unhappiness. It was a lack of happiness. It was exactly like how JK Rowling describes the dementors in Harry Potter: it was like my soul was missing. It was a lack of presence, like a veil was between me and the real world. But I could finally see this, and I realized this was depression caused by the medicine. I started an anti-depressant (Cymbalta). It made me happier, and somewhat more normal, but all three medicines had side effects that affected my energy. I was so without energy; again, I don't want to use the word "tired' or "sleepy", because it was just the lack of energy to do anything that I felt.

About four years later, I am off of Zarontin, but still on Zonegran and Cymbalta. I am more without energy than ever. I have gained weight because I don't have energy to be active. I have lost interest and motivation in things that I was once passionate about. I still am antisocial, and do not have any close friends which I can talk about this with. I'm working towards a masters degree, but I find it so hard to care, and yet when I'm prostrate on the couch I berate myself over and over that I'm not living my life to its fullest. I'm not making my parents proud. I'm not trying! I'm wasting my smarts and my body and my youth and it still doesn't give me the energy to stand up and do something about it. All I can do is lie there and hate myself.

What do I do? I need help. I have a psychiatrist that prescribes me the Cymbalta, but he doesn't seem too interested in what I say, which is exactly like my previous psychiatrist (I would have to wait for her for about 40 minutes, and when I was called in, she would talk to me for 2 minutes and give me the script.) I've seen two different therapists, but my problem is that I don't come off crazy during the first meeting, so I'm easily dismissed. I just feel so useless and worthless and unextraordinary, and I'm a disappointment to myself. I'm just out of ideas on how to fix this. I feel like I should just give up and let time and age swallow me as I am, and accept it.

*I'm not suicidal, as depressed as I may sound.

Comments

Welcome to the clubLife isn't

Submitted by just_joe on Sat, 2015-08-22 - 16:57

Welcome to the clubLife isn't fair. We all have something we have to deal with. From what I read you have been dealing with epilepsy for about 16 years. In that time you were depressed and put on another medication by another doctor.Now does your neurologist know about all the medications you take? Does your other doctor know about all the medications you take? The reason for those questions is "one medication can counter another medication and coupled together they could be a part of your problem. If empathy is what you are looking for you might get some in here. You might also get some other information which when read may seem like other things you have already been told about. You see I have "been there done that" Mike posted some good things. But you didn't like what he had to say, Well from the angle I am looking you lost your wanting and turned yourself into what you are today. For a person to get help they have to want it and I mean want it bad. Meds can and do cause a person to be drowsy and want to disassociate from others. But knowing that would lead a person to think of ways to get rid of that feeling or battle against it. I did. It can be done. Accepting is a hard thing to do and in order to accept epilepsy you need someone to help you battle. One of the people you need is your neurologist. But in order for him to help he needs to know that what you posted in here has been going on for some time. In every office visit I have had with my neurologists since 1970 I have asked them just as many questions as they asked me. If you go into his office and just answer his questions he will think you are happy with the way things are going with your epilepsy, So he writes you another RX. Keeping the same old meds where they are and no advancement is made to gain more control of your seizures.. My questions were plain and simple. Why aren't the medications controlling my seizures better? What can we do to gain better control of my seizures? Is there another medication that can control my seizures better? Can we couple another medication with this one to gain better control? Are there newer and better medication's with fewer side effects? You see I had already answered his questions on how have you been doing? Are you still having seizures? If so how many and what kind?I will not longer have the best neurologist I have ever had because he retired. But I have given you information that if used could be beneficial. Mike also gave you some.Just be glad you have forums and web sites and you are as young as you are. There are many different people like me who have been living and dealing with epilepsy for 50+ years. I was diagnosed before there were home computers. In order to research what I was diagnosed with I literally had to go to a real Library. You seem to have placed yourself in a corner not wanting to come out and associate with others. By doing that you set in motion things that can be changed.Accept the fact that you have epilepsy. Research the types of epilepsy you have along with the types of seizures you have. By doing that you gain knowledge. With that knowledge you can approach things in a different light. Once you have done that go back over what you posted and think of ways you can deal with those issues. Your husband can research it too and it can give him insight too. I know what it is like to have to hear you can't do this or that from others. I also know most of the people telling me that were surprised when I did do it. In other words If it was because people with epilepsy can't do this or that I showed them that people with epilepsy can do what everybody else can. Yup I am old school. I know that back in the 1960's people with epilepsy were still being put in homes. In the 1970's there were still some states that wouldn't let people with epilepsy get a marriage license. Things have come a long way.I hope you keep thing going and you get the assistance you needJoe

Welcome to the clubLife isn't fair. We all have something we have to deal with. From what I read you have been dealing with epilepsy for about 16 years. In that time you were depressed and put on another medication by another doctor.Now does your neurologist know about all the medications you take? Does your other doctor know about all the medications you take? The reason for those questions is "one medication can counter another medication and coupled together they could be a part of your problem. If empathy is what you are looking for you might get some in here. You might also get some other information which when read may seem like other things you have already been told about. You see I have "been there done that" Mike posted some good things. But you didn't like what he had to say, Well from the angle I am looking you lost your wanting and turned yourself into what you are today. For a person to get help they have to want it and I mean want it bad. Meds can and do cause a person to be drowsy and want to disassociate from others. But knowing that would lead a person to think of ways to get rid of that feeling or battle against it. I did. It can be done. Accepting is a hard thing to do and in order to accept epilepsy you need someone to help you battle. One of the people you need is your neurologist. But in order for him to help he needs to know that what you posted in here has been going on for some time. In every office visit I have had with my neurologists since 1970 I have asked them just as many questions as they asked me. If you go into his office and just answer his questions he will think you are happy with the way things are going with your epilepsy, So he writes you another RX. Keeping the same old meds where they are and no advancement is made to gain more control of your seizures.. My questions were plain and simple. Why aren't the medications controlling my seizures better? What can we do to gain better control of my seizures? Is there another medication that can control my seizures better? Can we couple another medication with this one to gain better control? Are there newer and better medication's with fewer side effects? You see I had already answered his questions on how have you been doing? Are you still having seizures? If so how many and what kind?I will not longer have the best neurologist I have ever had because he retired. But I have given you information that if used could be beneficial. Mike also gave you some.Just be glad you have forums and web sites and you are as young as you are.  There are many different people like me who have been living and dealing with epilepsy for 50+ years. I was diagnosed before there were home computers. In order to research what I was diagnosed with I literally had to go to a real Library. You seem to have placed yourself in a corner not wanting to come out and associate with others. By doing that you set in motion things that can be changed.Accept the fact that you have epilepsy. Research the types of epilepsy you have along with the types of seizures you have. By doing that you gain knowledge. With that knowledge you can approach things in a different light. Once you have done that go back over what you posted and think of ways you can deal with those issues. Your husband can research it too and it can give him insight too. I know what it is like to have to hear you can't do this or that from others. I also know most of the people telling me that were surprised when I did do it. In other words If it was because people with epilepsy can't do this or that I showed them that people with epilepsy can do what everybody else can. Yup I am old school. I know that back in the 1960's people with epilepsy were still being put in homes. In the 1970's there were still some states that wouldn't let people with epilepsy get a marriage license. Things have come a long way.I hope you keep thing going and you get the assistance you needJoe 

Welcome to the clubLife isn't fair. We all have something we have to deal with. From what I read you have been dealing with epilepsy for about 16 years. In that time you were depressed and put on another medication by another doctor.Now does your neurologist know about all the medications you take? Does your other doctor know about all the medications you take? The reason for those questions is "one medication can counter another medication and coupled together they could be a part of your problem. If empathy is what you are looking for you might get some in here. You might also get some other information which when read may seem like other things you have already been told about. You see I have "been there done that" Mike posted some good things. But you didn't like what he had to say, Well from the angle I am looking you lost your wanting and turned yourself into what you are today. For a person to get help they have to want it and I mean want it bad. Meds can and do cause a person to be drowsy and want to disassociate from others. But knowing that would lead a person to think of ways to get rid of that feeling or battle against it. I did. It can be done. Accepting is a hard thing to do and in order to accept epilepsy you need someone to help you battle. One of the people you need is your neurologist. But in order for him to help he needs to know that what you posted in here has been going on for some time. In every office visit I have had with my neurologists since 1970 I have asked them just as many questions as they asked me. If you go into his office and just answer his questions he will think you are happy with the way things are going with your epilepsy, So he writes you another RX. Keeping the same old meds where they are and no advancement is made to gain more control of your seizures.. My questions were plain and simple. Why aren't the medications controlling my seizures better? What can we do to gain better control of my seizures? Is there another medication that can control my seizures better? Can we couple another medication with this one to gain better control? Are there newer and better medication's with fewer side effects? You see I had already answered his questions on how have you been doing? Are you still having seizures? If so how many and what kind?I will not longer have the best neurologist I have ever had because he retired. But I have given you information that if used could be beneficial. Mike also gave you some.Just be glad you have forums and web sites and you are as young as you are. There are many different people like me who have been living and dealing with epilepsy for 50+ years. I was diagnosed before there were home computers. In order to research what I was diagnosed with I literally had to go to a real Library. You seem to have placed yourself in a corner not wanting to come out and associate with others. By doing that you set in motion things that can be changed.Accept the fact that you have epilepsy. Research the types of epilepsy you have along with the types of seizures you have. By doing that you gain knowledge. With that knowledge you can approach things in a different light. Once you have done that go back over what you posted and think of ways you can deal with those issues. Your husband can research it too and it can give him insight too. I know what it is like to have to hear you can't do this or that from others. I also know most of the people telling me that were surprised when I did do it. In other words If it was because people with epilepsy can't do this or that I showed them that people with epilepsy can do what everybody else can. Yup I am old school. I know that back in the 1960's people with epilepsy were still being put in homes. In the 1970's there were still some states that wouldn't let people with epilepsy get a marriage license. Things have come a long way.I hope you keep thing going and you get the assistance you needJoe

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Comments

Welcome to the clubLife isn't

Submitted by just_joe on Sat, 2015-08-22 - 16:57

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