I don’t know what to do. My seizures are inscreasing and my doctors aren’t helping me.

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Hey, I’m a 17 year old female. I can’t go to school with my epilepsy and the amount of seizures I keep having. I’m on medication and nothing has helped me. My seizures have been increasing and my doctor will not answer or reply to my calls. I used to have one or two a month. Now I’m having 1-3 a day! To others it’s not bad, but I’m not used to this and I don’t know what to do! my first caught gran mal was in February of 2018, I was diagnosed with epilepsy in March of 2018. I started Lamictal in May 2018, I was clear of all seizures until until December of 2018 that was when I had 3 grand mal seizures in a row. Then in January I had 3 within a week. Then in February I was having 4 a week, then in March I was switched to Keppra and taken off lamictal, i was seizure free for about a week on Keppra, but now they’ve gotten stronger. Now I’m having them about 1-3 times a day. Sometimes I can come out of a seizure in a few minutes, sometimes I can’t come out of a seizure for a few hours. Maybe 6 hours max. I started to have tons of absence seizures and my doctors won’t contact me back after I call them. Even when I get an appointment, they say I’m okay and send me away. I feel like something else is wrong and he isn’t taking me seriously. I’m getting a referral to a new doctor, but any advice right now would be appreciated. I just want to go back to school, they won’t let me in!!!

Comments

Hi there,Wow, got lots going

Submitted by penpal59 on Wed, 2019-04-10 - 00:47

Hi there,Wow, got lots going on all at once. This has all happened quite suddenly for you and at a very crucial time of your life. I understand where you're coming from as I was diagnosed with epilepsy at 14 and I was 18 before I found the right mix of medication to stabilize me.So if I were you I'd trust my instincts. There maybe something else wrong with you, however it might take some time to work it out. I can't give any medical advice but as a fellow epileptic I can let you know that I take lamictal and keppra and phenytoin.Keppra has a common side effect known as "keppra rage." You might be feeling that way now and as you've come off lamictal this might be why your seizures have got worse. Late nights, alcohol, recreational drugs, bad diet, and mood swings can all increase the likelihood of seizures.Its early days yet but as you went for seven months seizure free on lamictal I'd say sticking with it and adding keppra might have given you a better outcome. In the meantime try to relax and get as much sleep as you can. Vitamin B will help negate the side effects of "keppra rage." I take 2 vitamin B tablets every day as well as 8000mg Fish Oil to improve my mood and concentration.I realise school is very important to you, but sometimes its best to spend time in private to deal with the changes in your life now you are epileptic. I keep my mind active doing word puzzles and cross words when I'm in a place where I have to be patient. If you feel like writing down your seizures in a diary, go ahead, as they might be helpful to your Neurologist. I hope this will help you. RegardsJane

Sorry to see you are having

Submitted by Jazz101 on Wed, 2019-04-10 - 19:23

Sorry to see you are having such a rough time. With Epilepsy it is important to make sure your neurologist actually specializes in Epilepsy. After all, neurology is just a term referring to the brain. There are many conditions that fall in the realm of neurology. For example, there is Parkinson's; there are Strokes; and others. As a result you want to make sure your neurologist is a specialist in Epilepsy. A great start to finding one is to first pull up hospitals that have very high ratings in neurology and neurosurgery. Once you get to there neurology section, you can check the neurologists at that hospitals and focus on the ones who deal with Epilepsy.US News and World Report does a great job at rating hospitals in various areas. For you, like me, neurology and neurosurgery is the section you want to check out to see the hospitals. By the way, this site applies to you if you are here in the United States. After all, the hospitals are all here in the US. Here is the site. https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryYou'll see Mayo Clinic listed as number 1. Just scroll down from there and see which hospital is closest to you if you reside in the United States. Just click on the hospital and it will take you to their site where you can get more specifics about that particular hospital, such as their contact number etc.Epilepsy is best dealt with when you have neurologists who knows about Epilepsy, just as Parkinson's is best dealt with when you find a neurologist who specializes in Parkinson's. Also, given your seizures are now so frequent, it would be great if your neurologist orders what's called a 72-hour EEG. This is where you go in and the wires are attached to the main point and they send you home. You don't have to be in the hospital. They will tell you what to do should you sense a seizure or when a seizure occurs. After all, the goal is to capture where in the brain the focal area(s) located and what other areas are affected. Epilepsy is one of those "the more you know" conditions. As a result, if you have a seizure while the wires area attached to you, the results can really make a difference in how they go about seeking ways to better controlling the seizures. Again, with Epilepsy, make sure your neurologist is at a hospital versus just working on his or her own. That way you can have a team of individuals so just in case your neurologist isn't there another neurologist or maybe an RN can still take care of certain things that might be necessary. Check out the link I attached if you are in the United States. One more thing. Taking on Epilepsy also requires a lot of patience on your side. Patience at 17 probably isn't that easy. I can recall when I was that age. :)But to figure out what medication might be most effective in your case, it usually is a trial and error something. And that's because a particular medication can be really effective on one person but not to effective on another. Let us know if you were able to find a neurologist who specializes in Epilepsy. If you are in the United States that would be easier. After all, sometimes your hospital doesn't even have to be in your state if that hospital in a neighboring state is not that far away. That's how we dealt with my surgery. Neurosurgery was in my state but a particular test, what's termed an MEG, had to be done in my neighboring state. Best Regards

Sorry to see you are  having such a rough time. With Epilepsy it is important to make sure your neurologist actually specializes in Epilepsy. After all, neurology is just a term referring to the brain. There are many conditions that fall in the realm of neurology. For example, there is Parkinson's; there are Strokes; and others. As a result you want to make sure your neurologist is a specialist in Epilepsy. A great start to finding one is to first pull up hospitals that have very high ratings in neurology and neurosurgery. Once you get to there neurology section, you can check the neurologists at that hospitals and focus on the ones who deal with Epilepsy.US News and World Report does a great job at rating hospitals in various areas. For you, like me, neurology and neurosurgery is the section you want to check out to see the hospitals. By the way, this site applies to you if you are here in the United States. After all, the hospitals are all here in the US. Here is the site. https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryYou'll see Mayo Clinic listed as number 1. Just scroll down from there and see which hospital is closest to you if you reside in the United States. Just click on the hospital and it will take you to their site where you can get more specifics about that particular hospital, such as their contact number etc.Epilepsy is best dealt with when you have neurologists who knows about Epilepsy, just as Parkinson's is best dealt with when you find a neurologist who specializes in Parkinson's. Also, given your seizures are now so frequent, it would be great if your neurologist orders what's called a 72-hour EEG. This is where you go in and the wires are attached to the main point and they send you home. You don't have to be in the hospital. They will tell you what to do should you sense a seizure or when a seizure occurs. After all, the goal is to capture where in the brain the focal area(s) located and what other areas are affected. Epilepsy is one of those "the more you know" conditions. As a result, if you have a seizure while the wires area attached to you, the results can really make a difference in how they go about seeking ways to better controlling the seizures. Again, with Epilepsy, make sure your neurologist is at a hospital versus just working on his or her own. That way you can have a team of individuals so just in case your neurologist isn't there another neurologist or maybe an RN can still take care of certain things that might be necessary. Check out the link I attached if you are in the United States. One more thing. Taking on Epilepsy also requires a lot of patience on your side. Patience at 17 probably isn't that easy. I can recall when I was that age. :)But to figure out what medication might be most effective in your case, it usually is a trial and error something. And that's because a particular medication can be really effective on one person but not to effective on another. Let us know if you were able to find a neurologist who specializes in Epilepsy. If you are in the United States that would be easier. After all, sometimes your hospital doesn't even have to be in your state if that hospital in a neighboring state is not that far away. That's how we dealt with my surgery. Neurosurgery was in my state but a particular test, what's termed an MEG, had to be done in my neighboring state. Best Regards

Sorry to see you are having such a rough time. With Epilepsy it is important to make sure your neurologist actually specializes in Epilepsy. After all, neurology is just a term referring to the brain. There are many conditions that fall in the realm of neurology. For example, there is Parkinson's; there are Strokes; and others. As a result you want to make sure your neurologist is a specialist in Epilepsy. A great start to finding one is to first pull up hospitals that have very high ratings in neurology and neurosurgery. Once you get to there neurology section, you can check the neurologists at that hospitals and focus on the ones who deal with Epilepsy.US News and World Report does a great job at rating hospitals in various areas. For you, like me, neurology and neurosurgery is the section you want to check out to see the hospitals. By the way, this site applies to you if you are here in the United States. After all, the hospitals are all here in the US. Here is the site. https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryYou'll see Mayo Clinic listed as number 1. Just scroll down from there and see which hospital is closest to you if you reside in the United States. Just click on the hospital and it will take you to their site where you can get more specifics about that particular hospital, such as their contact number etc.Epilepsy is best dealt with when you have neurologists who knows about Epilepsy, just as Parkinson's is best dealt with when you find a neurologist who specializes in Parkinson's. Also, given your seizures are now so frequent, it would be great if your neurologist orders what's called a 72-hour EEG. This is where you go in and the wires are attached to the main point and they send you home. You don't have to be in the hospital. They will tell you what to do should you sense a seizure or when a seizure occurs. After all, the goal is to capture where in the brain the focal area(s) located and what other areas are affected. Epilepsy is one of those "the more you know" conditions. As a result, if you have a seizure while the wires area attached to you, the results can really make a difference in how they go about seeking ways to better controlling the seizures. Again, with Epilepsy, make sure your neurologist is at a hospital versus just working on his or her own. That way you can have a team of individuals so just in case your neurologist isn't there another neurologist or maybe an RN can still take care of certain things that might be necessary. Check out the link I attached if you are in the United States. One more thing. Taking on Epilepsy also requires a lot of patience on your side. Patience at 17 probably isn't that easy. I can recall when I was that age. :)But to figure out what medication might be most effective in your case, it usually is a trial and error something. And that's because a particular medication can be really effective on one person but not to effective on another. Let us know if you were able to find a neurologist who specializes in Epilepsy. If you are in the United States that would be easier. After all, sometimes your hospital doesn't even have to be in your state if that hospital in a neighboring state is not that far away. That's how we dealt with my surgery. Neurosurgery was in my state but a particular test, what's termed an MEG, had to be done in my neighboring state. Best Regards

Lots of good advice from

Submitted by Amy Jo on Thu, 2019-04-11 - 11:29

Lots of good advice from Nigel and Jane.Something to expand on when you see a better doc along the lines of more info can help... Have you had any imaging done? Sometimes people have difficulty controlling seizures with meds and they’ll see the reason on imaging. Most drugs have interaction issues with other drugs (even otc meds) which can impact their effectiveness- your docs should be told of all supplements and meds you take. Keppra has very few to be aware of but it’s pretty unusual. The common triggers of poor sleep, stress and illness are big deals for teens without epilepsy so don’t discount those (Jane mentioned it but could use flashing fonts for super emphasis). Hormones also can impact seizures so that’s another area to ask your new doc about if the doc isn’t getting useful info from other testing.