Hi Chris. My grand Mal’s were two months apart (almost within a day) after increases with lacosimide, which is only the second med I have tried. Couldn’t take Keppra due to side effects even though it controlled seizures much better. I have not talked to the Dr since this last trip to hospital a week ago so don’t know what he wants to do. This last time, however, I did experience two freezing, staring auras earlier in the day so daughter spent the night and I wasn’t alone. For that I am thankful for.
@baa Good Morning
I am sorry to hear that! Keppra according to what I have heard from epilepsy groups, it the AED that people most complain about. But I also know some people who are doing well on it.
I went through a similar experience in 2019, when the doctor switched Tegretol (carbamazepine) for Trileptal (oxcarbazepine), having a tonic clonic seizure (I usually have focal/partial seizures). Right after the seizure, my husband phoned my neurologist at that time and he oriented him to take me to the hospital, even if the seizure was over. It was observed that my sodium levels were very very low, being the cause of this seizure. It was a side-effect from the medication Trileptal. The hospital has contacted my neurologist at that time. Based on this, my neurologist switched Trileptal for Vimpat.
Have the hospital given you perhaps an insight why this seizure has happened? It would be very important to talk to your doctor as soon as possible.
One thing that my current epileptologist has said to me some time ago and is quite important. You should take one action at a time and not multiple actions at once, otherwise we will not know what is working and not working. As you are switching medication at this moment, I believe it is not the best time to introduce a gluten-free diet. Otherwise, you might not know what is working, the medication, the gluten-free diet or both of them. So, give youself some months just taking this new medication and see what are the results before introducing a diet. When I introduced my gluten-free diet, I was already 8 months on the same medication. Perhaps you could discuss the time frame with your doctor, how long should you wait just taking Lacosamide before starting a gluten free diet. This way you will also be able to have some statistics about your seizure's frequency afterwards.
Wishing you as well a beautiful weekend. You all must be still in the 4th of July mood in the States :-)!
Chris (@santosha)
@baa Good Morning
I am sorry to hear that! Keppra according to what I have heard from epilepsy groups, it the AED that people most complain about. But I also know some people who are doing well on it.
I went through a similar experience in 2019, when the doctor switched Tegretol (carbamazepine) for Trileptal (oxcarbazepine), having a tonic clonic seizure (I usually have focal/partial seizures). Right after the seizure, my husband phoned my neurologist at that time and he oriented him to take me to the hospital, even if the seizure was over. It was observed that my sodium levels were very very low, being the cause of this seizure. It was a side-effect from the medication Trileptal. The hospital has contacted my neurologist at that time. Based on this, my neurologist switched Trileptal for Vimpat.
Have the hospital given you perhaps an insight why this seizure has happened? It would be very important to talk to your doctor as soon as possible.
One thing that my current epileptologist has said to me some time ago and is quite important. You should take one action at a time and not multiple actions at once, otherwise we will not know what is working and not working. As you are switching medication at this moment, I believe it is not the best time to introduce a gluten-free diet. Otherwise, you might not know what is working, the medication, the gluten-free diet or both of them. So, give youself some months just taking this new medication and see what are the results before introducing a diet. When I introduced my gluten-free diet, I was already 8 months on the same medication. Perhaps you could discuss the time frame with your doctor, how long should you wait just taking Lacosamide before starting a gluten free diet. This way you will also be able to have some statistics about your seizure's frequency afterwards.
Wishing you as well a beautiful weekend. You all must be still in the 4th of July mood in the States :-)!
Chris (@santosha)
Chris, thank you so much for this response. The hospital has given me no info except my lactic acid levels were a bit off and I would think that was from the seizure. Somehow they thought I had a migraine which must have triggered the seizure but that is incorrect. I did not have a migraine until I became conscious in the ER where they injected 1,000 mg Keppra. The neuro has not returned my messages so there has been no med changed, etc. Lacosimide is only the second med I have been on since first seizure in 2022. And it was changed to lacosimide 12/2022. It was increased from 100mgx2 daily first of Dec 2022 to 100 mg morning and 150 mg night at the end of Dec 2922 due to another seizure. Neuro then diagnosed as complex migraines in 9/2023 and 12/2023. (I don’t think he knows what they are when unwitnessed to be honest). 4/2024 I was taken to hospital for complex migraine (appeared as a stroke) and had a grand mal while having MRI. Lacosimide changed to 150mgx2. Now, taken to ER 6/28/2024 for witnessed grand mal and haven’t heard back from neuro. I guess he will change med again. My kids are wanting me to see an epileptologist and closest is at Vanderbilt in Nashville, about 3+ hours. I’m going to try to get a response Monday from the neuro. Not sure what to do. I feel guilty for letting this depress me.
Chris, one positive is that I had two auras where I froze and stared about a minute before I went to bed the night of 28th. My daughter was here and we both realized it. So we were expecting something, she spent the night, was here when the grand mal happened and got me help. I sure hope that kind of thing continues so I won’t be alone!
Chris, thank you so much for this response. The hospital has given me no info except my lactic acid levels were a bit off and I would think that was from the seizure. Somehow they thought I had a migraine which must have triggered the seizure but that is incorrect. I did not have a migraine until I became conscious in the ER where they injected 1,000 mg Keppra. The neuro has not returned my messages so there has been no med changed, etc. Lacosimide is only the second med I have been on since first seizure in 2022. And it was changed to lacosimide 12/2022. It was increased from 100mgx2 daily first of Dec 2022 to 100 mg morning and 150 mg night at the end of Dec 2922 due to another seizure. Neuro then diagnosed as complex migraines in 9/2023 and 12/2023. (I don’t think he knows what they are when unwitnessed to be honest). 4/2024 I was taken to hospital for complex migraine (appeared as a stroke) and had a grand mal while having MRI. Lacosimide changed to 150mgx2. Now, taken to ER 6/28/2024 for witnessed grand mal and haven’t heard back from neuro. I guess he will change med again. My kids are wanting me to see an epileptologist and closest is at Vanderbilt in Nashville, about 3+ hours. I’m going to try to get a response Monday from the neuro. Not sure what to do. I feel guilty for letting this depress me.
@baa a Very Good Morning to You!
I hope you had a pleasant weekend.
Ackward that your neuro has not yet returned your messages in such situation. Perhaps the messages got lost in his or her mailbox? Have you tried to call his or her office and leave a message with his or her assistant?
Finding the right doctor is something that can take some time. It needs sometimes persistance and patience as it was with me. But do not give up.
Have you considered having first a video call appointment with this epileptologist? This might speed up the whole process and make things easier for you and your family. I did that two times, in 2019 and 2020. One was with a neurologist from another state. Seeing her personally would require flying 2 two hours to her city. The second was with an clinic/epilepsy center in the States. As you know, I live in São Paulo city, Brazil. Thankfully, today with the technology we have, we can share exams through internet. At this American clinic, I could uploaded all my exams on its platform. Rarely, I have been examined at a medical appointment for epilepsy in which I was present in person. The medical appointments are mostly based on exams and talks.
Please do not let all that make you feel guilty and depressed. It is not your fault!!! Have you considered having the support of a neuropsychologist? I started with my neuropsychologist 6 months after being diagnosed with epilepsy in 2019. I was feeling terrible at that time. She has been of great help to me in various manners, helping me in the acceptance of my epilepsy, giving me much support in difficult times of my treatment and when I was depressed and many other things. In 2019, my sessions were all in person, but with Covid times, they turned online and I keep it this way as I do not drive anymore, making my life much easier. And it works very well.
Sending you my good vibrations and wishing you a peaceful week!
Chris (@santosha)
@baa a Very Good Morning to You!
I hope you had a pleasant weekend.
Ackward that your neuro has not yet returned your messages in such situation. Perhaps the messages got lost in his or her mailbox? Have you tried to call his or her office and leave a message with his or her assistant?
Finding the right doctor is something that can take some time. It needs sometimes persistance and patience as it was with me. But do not give up.
Have you considered having first a video call appointment with this epileptologist? This might speed up the whole process and make things easier for you and your family. I did that two times, in 2019 and 2020. One was with a neurologist from another state. Seeing her personally would require flying 2 two hours to her city. The second was with an clinic/epilepsy center in the States. As you know, I live in São Paulo city, Brazil. Thankfully, today with the technology we have, we can share exams through internet. At this American clinic, I could uploaded all my exams on its platform. Rarely, I have been examined at a medical appointment for epilepsy in which I was present in person. The medical appointments are mostly based on exams and talks.
Please do not let all that make you feel guilty and depressed. It is not your fault!!! Have you considered having the support of a neuropsychologist? I started with my neuropsychologist 6 months after being diagnosed with epilepsy in 2019. I was feeling terrible at that time. She has been of great help to me in various manners, helping me in the acceptance of my epilepsy, giving me much support in difficult times of my treatment and when I was depressed and many other things. In 2019, my sessions were all in person, but with Covid times, they turned online and I keep it this way as I do not drive anymore, making my life much easier. And it works very well.
Sending you my good vibrations and wishing you a peaceful week!
Chris (@santosha)
Chris thank you so much. Still haven’t heard from neuro but just sent another message. His assistant is wonderful and I’m sure she will try to get his attention. I live two blocks from his office and my son, who has become interested and intends to talk to him, lives about 8 blocks. The doc works through hospital system and I believe he is overloaded with patients. I didn’t even think about doing a visit with an epileptologist at Vanderbilt online so again, your advice is so appreciated! Going to work on that and many, many thanks. Have a beautiful day my friend-
Chris thank you so much. Still haven’t heard from neuro but just sent another message. His assistant is wonderful and I’m sure she will try to get his attention. I live two blocks from his office and my son, who has become interested and intends to talk to him, lives about 8 blocks. The doc works through hospital system and I believe he is overloaded with patients. I didn’t even think about doing a visit with an epileptologist at Vanderbilt online so again, your advice is so appreciated! Going to work on that and many, many thanks. Have a beautiful day my friend-
My pleasure @baa!
Hope all works well with your neurologist, succeeding in having his attention through his assistant and also with an online medical appointment settled with the epileptologist in Vanderbilt.
Crossing my fingers for you!
Chris (@santosha)
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@baa Good Morning
I am sorry to hear that! Keppra according to what I have heard from epilepsy groups, it the AED that people most complain about. But I also know some people who are doing well on it.
I went through a similar experience in 2019, when the doctor switched Tegretol (carbamazepine) for Trileptal (oxcarbazepine), having a tonic clonic seizure (I usually have focal/partial seizures). Right after the seizure, my husband phoned my neurologist at that time and he oriented him to take me to the hospital, even if the seizure was over. It was observed that my sodium levels were very very low, being the cause of this seizure. It was a side-effect from the medication Trileptal. The hospital has contacted my neurologist at that time. Based on this, my neurologist switched Trileptal for Vimpat.
Have the hospital given you perhaps an insight why this seizure has happened? It would be very important to talk to your doctor as soon as possible.
One thing that my current epileptologist has said to me some time ago and is quite important. You should take one action at a time and not multiple actions at once, otherwise we will not know what is working and not working. As you are switching medication at this moment, I believe it is not the best time to introduce a gluten-free diet. Otherwise, you might not know what is working, the medication, the gluten-free diet or both of them. So, give youself some months just taking this new medication and see what are the results before introducing a diet. When I introduced my gluten-free diet, I was already 8 months on the same medication. Perhaps you could discuss the time frame with your doctor, how long should you wait just taking Lacosamide before starting a gluten free diet. This way you will also be able to have some statistics about your seizure's frequency afterwards.
Wishing you as well a beautiful weekend. You all must be still in the 4th of July mood in the States :-)!
Chris (@santosha)
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4 ReactionsChris, thank you so much for this response. The hospital has given me no info except my lactic acid levels were a bit off and I would think that was from the seizure. Somehow they thought I had a migraine which must have triggered the seizure but that is incorrect. I did not have a migraine until I became conscious in the ER where they injected 1,000 mg Keppra. The neuro has not returned my messages so there has been no med changed, etc. Lacosimide is only the second med I have been on since first seizure in 2022. And it was changed to lacosimide 12/2022. It was increased from 100mgx2 daily first of Dec 2022 to 100 mg morning and 150 mg night at the end of Dec 2922 due to another seizure. Neuro then diagnosed as complex migraines in 9/2023 and 12/2023. (I don’t think he knows what they are when unwitnessed to be honest). 4/2024 I was taken to hospital for complex migraine (appeared as a stroke) and had a grand mal while having MRI. Lacosimide changed to 150mgx2. Now, taken to ER 6/28/2024 for witnessed grand mal and haven’t heard back from neuro. I guess he will change med again. My kids are wanting me to see an epileptologist and closest is at Vanderbilt in Nashville, about 3+ hours. I’m going to try to get a response Monday from the neuro. Not sure what to do. I feel guilty for letting this depress me.
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2 ReactionsChris, one positive is that I had two auras where I froze and stared about a minute before I went to bed the night of 28th. My daughter was here and we both realized it. So we were expecting something, she spent the night, was here when the grand mal happened and got me help. I sure hope that kind of thing continues so I won’t be alone!
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2 Reactions@baa a Very Good Morning to You!
I hope you had a pleasant weekend.
Ackward that your neuro has not yet returned your messages in such situation. Perhaps the messages got lost in his or her mailbox? Have you tried to call his or her office and leave a message with his or her assistant?
Finding the right doctor is something that can take some time. It needs sometimes persistance and patience as it was with me. But do not give up.
Have you considered having first a video call appointment with this epileptologist? This might speed up the whole process and make things easier for you and your family. I did that two times, in 2019 and 2020. One was with a neurologist from another state. Seeing her personally would require flying 2 two hours to her city. The second was with an clinic/epilepsy center in the States. As you know, I live in São Paulo city, Brazil. Thankfully, today with the technology we have, we can share exams through internet. At this American clinic, I could uploaded all my exams on its platform. Rarely, I have been examined at a medical appointment for epilepsy in which I was present in person. The medical appointments are mostly based on exams and talks.
Please do not let all that make you feel guilty and depressed. It is not your fault!!! Have you considered having the support of a neuropsychologist? I started with my neuropsychologist 6 months after being diagnosed with epilepsy in 2019. I was feeling terrible at that time. She has been of great help to me in various manners, helping me in the acceptance of my epilepsy, giving me much support in difficult times of my treatment and when I was depressed and many other things. In 2019, my sessions were all in person, but with Covid times, they turned online and I keep it this way as I do not drive anymore, making my life much easier. And it works very well.
Sending you my good vibrations and wishing you a peaceful week!
Chris (@santosha)
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Helpful -
Hug
2 ReactionsChris thank you so much. Still haven’t heard from neuro but just sent another message. His assistant is wonderful and I’m sure she will try to get his attention. I live two blocks from his office and my son, who has become interested and intends to talk to him, lives about 8 blocks. The doc works through hospital system and I believe he is overloaded with patients. I didn’t even think about doing a visit with an epileptologist at Vanderbilt online so again, your advice is so appreciated! Going to work on that and many, many thanks. Have a beautiful day my friend-
-
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Helpful -
Hug
2 ReactionsMy pleasure @baa!
Hope all works well with your neurologist, succeeding in having his attention through his assistant and also with an online medical appointment settled with the epileptologist in Vanderbilt.
Crossing my fingers for you!
Chris (@santosha)
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