Almost 42 & just diagnosed.

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Hi, I am brand new to this. Been dealing with symptoms for over a year, but was only diagnosed a few weeks ago. I have partial seizures, and I only know that because I read about it. My neurologist informed me that I was 'prone to Epileptic type seizures.' He gave me a precription for Tegretol and that was that. He told me nothing. So, here I am. I'm feeling scared and alone. My family tries to understand what my seizures feel like to me (since they can't see anything happen), but they just can't grasp it. I don't know how they could... I can barely grasp this myself. I did call my doctor back once. I asked if this will get worse. You know, I don't want to drop into a convulsion with only me and my 6 year old son home. That would scare him to death! He told me that he didn't think it should. Well, that was reassuring, let me tell you. DIDN'T BELIEVE IT SHOULD! Here I am, only a few weeks later, and I'm experiencing a change in my mind, a sporatic twitching in my feet and upper legs, and at times, a bit of trouble saying words properly. I am scared. I'm terrified. And I feel alone.

Comments

So you maybe already know

Submitted by Amy Jo on Wed, 2014-07-02 - 11:55

So you maybe already know that he isn't a good fit for you but if there is some question about whether that neurologist is a possible good choice.. you have more questions that came to you later, a follow up appt where those get answered might clarify that for you. It is hard to know if the doc wasn't really engaged or just didn't want to freak you out, most people have their seizures controlled with their first medication.. You insurance should have lists of neurologists they use, perhaps you can see who specializes in epilepsy or who has some patients gushing about how great that doc is. Local epilepsy foundation office may have some helpful info when looking for a responsive neurologist & getting some resources to learn about seizures (aside from online info from reasonable sites), our local EF group (multi state area but involved at local level) has a spring/fall conference in different cities and other awareness/other resources.Sounds like your seizures may be changing so your dose at least should be looked at. If you haven't had any imaging done, ask/push about that (common for partial epilepsy work ups so I would expect that's been done and is unremarkable).

There is no garuntee that you

Submitted by just_joe on Wed, 2014-07-02 - 15:31

There is no garuntee that you will get seizure free. As for getting worse no one knows. I say that because some people do get worse and havemedications dosages changed and they get better. I also know that it does take time for medications to start working the way they should. Understand that each persons seizure is different even if they have the same type of seizure. A medications that works for one person may not for the next and the same with dosages. Mine first dosages were changed 4 times in the 1 & 1/2 months. The seizures stopped for a short time. But dosages are generally set with th weight of the person taking them so if I was changing the dosage meeded to be raised. Generally once a perscription is given out the neurologist sets up an appointment up in a couple of months. The reasoon for that is to adjust the medication or change it or couple another medication with it. SO he will be asking questions. Has thise medication stopped all your seizures? Have you had anything happen that is different then what was normal to you. There will be others, During that appt. is when you should ask your questions. Like What type of epilepsy do I have? What kind of seizures can I have? Is this the best medication for my kind of seizures? Are these twitches different seizures and if they are will this mediaction stop them too? Is this dosage high enough to stop the seizures or is it too low? Aks him questions you want answers to. It is also hard for family members to talk about heart attacks or cancer but they do. It just takes time for it to sink in. Believe me you are not alone. This site is helpful and the forum is here to be used and ask questions when you need to. Many of us will answer your questions. I see 2 people already posted to your post. Mereloaded and Amy Jo asnwer a lot of posts. They have answers I believe their posts are from research they have done. My post is from what I have experianced in the 50+ years I have lived and dealt with epilepsy. As Mereloaded posted there is no cure for epilepsy. People can and have grown out of it. My cousin went some time and she was taken off her meds. She has been seizure free for many years and is married. Has a great job is married. SO there have been many advancements in diagnosis medications procedures and more is being done. As for the twitching if it is new then you should call your neurologist he might want to make some changes to your dosage, As for your dosage and meds by all means take them at the same time daily. If they are to be taken 2 times a day then those times need to be 12 hours apart. Medications lose their strength so the dosages are meaker near the end of the 12 hours. If you have a delay you might have breakthru seizures because of that delay. I was seizure free for 3+ years and I was still taking meds. I had a seizure. Well that seizure was nothing like the ones I had had before. It was shorter and not as powerful it didn't go into a convulsion which my focal seizures used to do. Those seizures today are secongs long and you and many others would no nothing about them since I could have one while speaking to you. So advancements have been made. I would also suggeat yo uget hte my epilepsy diary it is under the get help section. Watch the video which tells you how to use it and what it can do. I do hope this helps and you get teh assistance you need Joe

There is no garuntee that you will get seizure free. As for getting worse no one knows. I say that because some people do get worse and havemedications dosages changed and they get better. I also know that it does take time for medications to start working the way they should. Understand that each persons seizure is different even if they have the same type of seizure. A medications that works for one person may not for the next and the same with dosages. Mine first dosages were changed 4 times in the 1 & 1/2 months. The seizures stopped for a short time. But dosages are generally set with th weight of the person taking them so if I was changing the dosage meeded to be raised. Generally once a perscription is given out the neurologist sets up an appointment up in a couple of months. The reasoon for that is to adjust the medication or change it or couple another medication with it. SO he will be asking questions. Has thise medication stopped all your seizures? Have you had anything happen that is different then what was normal to you. There will be others, During that appt. is when you should ask your questions. Like What type of epilepsy do I have? What kind of seizures can I have? Is this the best medication for my kind of seizures? Are these twitches different seizures and if they are will this mediaction stop them too? Is this dosage high enough to stop the seizures or is it too low? Aks him questions you want answers to. It is also hard for family members to talk about heart attacks or cancer but they do. It just takes time for it to sink in. Believe me you are not alone. This site is helpful and the forum is here to be used and ask questions when you need to. Many of us will answer your questions. I see 2 people already posted to your post. Mereloaded and Amy Jo asnwer a lot of posts. They have answers I believe their posts are from research they have done. My post is from what I have experianced in the 50+ years I have lived and dealt with epilepsy. As Mereloaded posted there is no cure for epilepsy. People can and have grown out of it. My cousin went some time and she was taken off her meds. She has been seizure free for many years and is married. Has a great job is married. SO there have been many advancements in diagnosis medications procedures and more is being done. As for the twitching if it is new then you should call your neurologist he might want to make some changes to your dosage, As for your dosage and meds by all means take them at the same time daily. If they are to be taken 2 times a day then those times need to be 12 hours apart. Medications lose their strength so the dosages are meaker near the end of the 12 hours. If you have a delay you might have breakthru seizures because of that delay. I was seizure free for 3+ years and I was still taking meds. I had a seizure. Well that seizure was nothing like the ones I had had before. It was shorter and not as powerful it didn't go into a convulsion which my focal seizures used to do. Those seizures today are secongs long and you and many others would no nothing about them since I could have one while speaking to you. So advancements have been made. I would also suggeat yo uget hte my epilepsy diary it is under the get help section. Watch the video which tells you how to use it and what it can do. I do hope this helps and you get teh assistance you need Joe  

There is no garuntee that you will get seizure free. As for getting worse no one knows. I say that because some people do get worse and havemedications dosages changed and they get better. I also know that it does take time for medications to start working the way they should. Understand that each persons seizure is different even if they have the same type of seizure. A medications that works for one person may not for the next and the same with dosages. Mine first dosages were changed 4 times in the 1 & 1/2 months. The seizures stopped for a short time. But dosages are generally set with th weight of the person taking them so if I was changing the dosage meeded to be raised. Generally once a perscription is given out the neurologist sets up an appointment up in a couple of months. The reasoon for that is to adjust the medication or change it or couple another medication with it. SO he will be asking questions. Has thise medication stopped all your seizures? Have you had anything happen that is different then what was normal to you. There will be others, During that appt. is when you should ask your questions. Like What type of epilepsy do I have? What kind of seizures can I have? Is this the best medication for my kind of seizures? Are these twitches different seizures and if they are will this mediaction stop them too? Is this dosage high enough to stop the seizures or is it too low? Aks him questions you want answers to. It is also hard for family members to talk about heart attacks or cancer but they do. It just takes time for it to sink in. Believe me you are not alone. This site is helpful and the forum is here to be used and ask questions when you need to. Many of us will answer your questions. I see 2 people already posted to your post. Mereloaded and Amy Jo asnwer a lot of posts. They have answers I believe their posts are from research they have done. My post is from what I have experianced in the 50+ years I have lived and dealt with epilepsy. As Mereloaded posted there is no cure for epilepsy. People can and have grown out of it. My cousin went some time and she was taken off her meds. She has been seizure free for many years and is married. Has a great job is married. SO there have been many advancements in diagnosis medications procedures and more is being done. As for the twitching if it is new then you should call your neurologist he might want to make some changes to your dosage, As for your dosage and meds by all means take them at the same time daily. If they are to be taken 2 times a day then those times need to be 12 hours apart. Medications lose their strength so the dosages are meaker near the end of the 12 hours. If you have a delay you might have breakthru seizures because of that delay. I was seizure free for 3+ years and I was still taking meds. I had a seizure. Well that seizure was nothing like the ones I had had before. It was shorter and not as powerful it didn't go into a convulsion which my focal seizures used to do. Those seizures today are secongs long and you and many others would no nothing about them since I could have one while speaking to you. So advancements have been made. I would also suggeat yo uget hte my epilepsy diary it is under the get help section. Watch the video which tells you how to use it and what it can do. I do hope this helps and you get teh assistance you need Joe

Thank you all for your

Submitted by Anonymous on Wed, 2014-07-02 - 20:03

Thank you all for your responses. They have all really helped a lot, more than you could know. I never concidered that the twitches could be a different type of seizure. That was intetesting to realize... I do have an appointment with tbe seizure specialist but not for another month. My seizures have never completely stopped. There will be days when they seem really good, then they go CRAZY the next.