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Suggest Treatment For Focal Epilepsy
Hi,
I was clinically diagnosed with epilepsy a few days ago and I'm still taking time for the news to sink in. I'm feeling very scared and confused, and have one particular reason to doubt my diagnosis and ask for a second opinion.
My first seizure (2 years ago and dismissed as a panic attack) and a subsequent cluster of 7/8? over 2 days last Oct, always begin untypically?
I get a sudden claw like cramp in my left hand and then it bends back on me and I get an excruciating pain, like i'm being electrocuted, which travels up from my hand to my shoulder. My arm 'contorts' as the pain travels upwards and I have no control over it. It's like my arm is not my own and it has the power to push me sideways or down to the floor. While this is happening I have an overwhelming fear that I'm going to die and this terrifies me!
I think it takes about 10 seconds for the pain to reach my shoulder and then I pass out.
I wake up/come round feeling very depressed or in tears and with no memory of what's just happened. After some period of time (have no idea how long) my memory of 'the event' comes flooding back to me, I find I have bitten my tongue, lip and/or inside cheek and can't remember things such passwords or even my date of birth!
All of my hospital tests were clear, but from my description of what was happening to me, the neurologist said it is typical of focal epilepsy affecting and beginning in the right side of my brain (hence the left side symptoms) progressing quickly to a generalised seizure affecting the whole on my brain.
I've done a lot of research about epilepsy, so I understand what was explained to me, but I haven't found any reference to my personal experience of any 'convulsion' or extreme pain before loss of conciousness?
I've been prescribed medication (Trileptal) but I'm reluctant to take it as my last seizure was five months ago. My neurologist asked me if I wanted to take medication and I said yes. She then reeled off the names of three meds so quickly I can't remember what they were. I said I would like the medication with the least side effects, the neurologist then explained about a side affecting contraception, but explained nothing else.
I feel I was in no position to make an informed decision regarding medication and have susequently found that Tileptal is the worst medication for me in terms of side effects regarding hair loss and acne.
Futhermore, my neurologist went on a month's leave the day after my consultation. I rang the departments epilepsy nurse, expressing my concerns but she couldn't help, as the neurologist had made minimal notes!
I really don't know what to do. I live alone with my 2 sons aged 9 and 11, and I don't know how this medication could affect me as it does mention in the advice leaflet that it may increase seizures?
I was clinically diagnosed with epilepsy a few days ago and I'm still taking time for the news to sink in. I'm feeling very scared and confused, and have one particular reason to doubt my diagnosis and ask for a second opinion.
My first seizure (2 years ago and dismissed as a panic attack) and a subsequent cluster of 7/8? over 2 days last Oct, always begin untypically?
I get a sudden claw like cramp in my left hand and then it bends back on me and I get an excruciating pain, like i'm being electrocuted, which travels up from my hand to my shoulder. My arm 'contorts' as the pain travels upwards and I have no control over it. It's like my arm is not my own and it has the power to push me sideways or down to the floor. While this is happening I have an overwhelming fear that I'm going to die and this terrifies me!
I think it takes about 10 seconds for the pain to reach my shoulder and then I pass out.
I wake up/come round feeling very depressed or in tears and with no memory of what's just happened. After some period of time (have no idea how long) my memory of 'the event' comes flooding back to me, I find I have bitten my tongue, lip and/or inside cheek and can't remember things such passwords or even my date of birth!
All of my hospital tests were clear, but from my description of what was happening to me, the neurologist said it is typical of focal epilepsy affecting and beginning in the right side of my brain (hence the left side symptoms) progressing quickly to a generalised seizure affecting the whole on my brain.
I've done a lot of research about epilepsy, so I understand what was explained to me, but I haven't found any reference to my personal experience of any 'convulsion' or extreme pain before loss of conciousness?
I've been prescribed medication (Trileptal) but I'm reluctant to take it as my last seizure was five months ago. My neurologist asked me if I wanted to take medication and I said yes. She then reeled off the names of three meds so quickly I can't remember what they were. I said I would like the medication with the least side effects, the neurologist then explained about a side affecting contraception, but explained nothing else.
I feel I was in no position to make an informed decision regarding medication and have susequently found that Tileptal is the worst medication for me in terms of side effects regarding hair loss and acne.
Futhermore, my neurologist went on a month's leave the day after my consultation. I rang the departments epilepsy nurse, expressing my concerns but she couldn't help, as the neurologist had made minimal notes!
I really don't know what to do. I live alone with my 2 sons aged 9 and 11, and I don't know how this medication could affect me as it does mention in the advice leaflet that it may increase seizures?
Mon, 17 Dec 2018
Hello,
Judging from your description I would agree that the most likely nature of the episodes is focal epilepsy with secondary generalization. I am not sure what sources you have consulted, perhaps at times it depends what terms have been used.
However, yours is not such an uncommon occurrence. Focal seizures starting with dystonia (which would be the medical term for that painful abnormal contortion posture of the upper limb you describe) are well known, the same applies to the subsequent generalized seizure. So while I don't know what tests you've had (EEG, MRI, blood tests etc) and whether there are any changes on EEG to further support the diagnosis, clinically speaking your descriptions correspond to the epilepsy diagnosis.
As for treatment, Trileptal is a commonly used first choice medication, in particular when there is a focal nature such as in your case. Of course all antiepileptics have a potential for side effects, but Trileptal is one of the better tolerated ones. While seizures are rare they can be dangerous at times as the fall may cause accidents depending on the situation it happens (say you fall on the stove cooking, or are upon a ladder etc). So treatment is advised when there are repeated seizures. Only when it has bee at least 2 years without seizures may gradual treatment withdrawal be considered.
Hope I have answered your query. Let me know if I can assist you further.
Regards,
Dr. Olsi Taka,
Neurologist
Judging from your description I would agree that the most likely nature of the episodes is focal epilepsy with secondary generalization. I am not sure what sources you have consulted, perhaps at times it depends what terms have been used.
However, yours is not such an uncommon occurrence. Focal seizures starting with dystonia (which would be the medical term for that painful abnormal contortion posture of the upper limb you describe) are well known, the same applies to the subsequent generalized seizure. So while I don't know what tests you've had (EEG, MRI, blood tests etc) and whether there are any changes on EEG to further support the diagnosis, clinically speaking your descriptions correspond to the epilepsy diagnosis.
As for treatment, Trileptal is a commonly used first choice medication, in particular when there is a focal nature such as in your case. Of course all antiepileptics have a potential for side effects, but Trileptal is one of the better tolerated ones. While seizures are rare they can be dangerous at times as the fall may cause accidents depending on the situation it happens (say you fall on the stove cooking, or are upon a ladder etc). So treatment is advised when there are repeated seizures. Only when it has bee at least 2 years without seizures may gradual treatment withdrawal be considered.
Hope I have answered your query. Let me know if I can assist you further.
Regards,
Dr. Olsi Taka,
Neurologist
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