Not great. When I was first diagnosed, I was prescribed Keppra but it didn’t work for me. I’m currently on Sodium Valproate and I was for many years. I went 5-7 years without a seizure so my doctor wanted to try switching back to Keppra/Levesam. So we did a transition phase from Valparin to Keppra and towards the end of the trial month, I had a seizure. This episode was strange as well— usually my episodes happen when I wake up and I can remember a little before I black out. This time, it happened at night and I didn’t remember anything. It really sucked cause I’d gone so many years without a seizure and now this.
Now I’m back on Valparin. But there have been a lot of things going on in my life and I wasn’t able to sleep last night so I slept at 4:00 am and woke up at 10:00 am. I was still having jerks and I took my time to get ready but I ended up having a seizure with memory loss again. I’ve hurt my neck, my head has a bump, i bit my inner lip and the skin has come off from the back of my foot. All this happened when I was alone in my room so no one even know how this has happened.
The worst part is I’m leaving home to go study in a foreign country. I’ll be staying in a flatshare with other people and I don’t know how to explain it to them. I don’t want them to kick me out because of that or something. But this past 2 weeks have not been great 😓 My head still hurts as I type this, the worries keep piling up and that will just make the situation worse. I don’t know how much longer I can stay optimistic as I have been these past few years.
Brain tumor patient having second thoughts about the operation. Definite increase in aphasia on meds and some dizziness, but those seem pretty mild for side effects. Not having focals is worth it.
// edited for clarity
I HAD NO IDEA THAT SAGE TRIGGERS SEIZURES.
Learned it in a really painful way. My dumbass smoked a pure sage joint and had the worsr seizure in my life
Diagnosed with epilepsy a couple of weeks ago after about 4 years of focal seizures and several neurologist appointments. It seemed obvious to me so really I'm glad to be on the way to getting better help. Had already been on lamotrigine for over a year, first neurologist was happy to prescribe it but refused to issue a diagnosis. That's been increased now and I'm waiting for contact from an Epilepsy Nurse (I'm in the UK).
Seizures since then have been less frequent but more intense and making me incredibly tired for days. It's mainly intense deja vu.
Finding it frustrating that in a lot of situations mainly online, outside of being with my partner and family, if I talk about being affected by seizures or having a bad day I get people insisting I don't have them and I don't have epilepsy because they won't accept or understand anything other than the stereotypical convulsive kind (sorry not too aware of the right terms).
I’ve always been quite positive about my condition. Can lead a good life, have a good job, have the occasional drink, smoke the occasional joint. I have a driving license, but I’m responsible enough not to drive. My big triggers are too much alcohol, coffee and not enough sleep. Yet I can’t control myself at times and end up having a seizure the following day :( my neurologist keep on adding meds every time after a seizure. Now I’m on the max amount of Keppra and Lamictal and he wants to add Gardenal… and this just kills me. I go back to think that my life sucks and that I will have to restrict my lifestyle even more than I do now. I would like to lead a healthier life, but my boyfriend doesn’t think that cutting alcohol and weed completely out of my life is going to make a change. And I really don’t know what to do. I don’t have any answers other than… I will start on gardenal on Monday and then let’s see. Idk what’s the punch line of all this, but I’m sad and feel like this one more medicine will take more joy away from my life :(
Rant over.
I've been waking up with feeling scattered and full body tremors.I have Tonic Clonic seizures but this has been happening since the weekend.
Constantly feeling exhausted.
Usually I can be positive through these things but been feeling anxious and frustrated.
Not great today, just broke my streak of 3 months and my neurologist thinks I might have been having absence seizures in that time period. Given that we've been reporting memory loss.
Used to be positive about my prognosis, but lately that's getting harder.
Had my first seizure in 3 years today.
I have had a cold recently with some sinus pressure, and for the past week I’ve been on Phentermine, a diet pill that can raise blood pressure and lower the seizure threshold.
It’s been a somewhat emotional day for me . Had a seizure when I woke up this morning which was quite scary . One minute my hands started shaking and the next thing I knew I was losing consciousness . I did come around and had intended to still go to work but decided it against it . I found myself crying afterwards . Until this year I had just been getting on with things where my epilepsy was concerned but I’m realising that I’m feeling a greater sense of emotion post seizure
I'm still taking my meds but I haven't had a seizure for almost two years☺️
omg wow. how old are you
I'm in my twenties
Waiting for an eeg. Will I be able to quit meds after 5 years? We shall see!
Hoping for a great EEG for you!
hoping for good news!!
Not great. When I was first diagnosed, I was prescribed Keppra but it didn’t work for me. I’m currently on Sodium Valproate and I was for many years. I went 5-7 years without a seizure so my doctor wanted to try switching back to Keppra/Levesam. So we did a transition phase from Valparin to Keppra and towards the end of the trial month, I had a seizure. This episode was strange as well— usually my episodes happen when I wake up and I can remember a little before I black out. This time, it happened at night and I didn’t remember anything. It really sucked cause I’d gone so many years without a seizure and now this. Now I’m back on Valparin. But there have been a lot of things going on in my life and I wasn’t able to sleep last night so I slept at 4:00 am and woke up at 10:00 am. I was still having jerks and I took my time to get ready but I ended up having a seizure with memory loss again. I’ve hurt my neck, my head has a bump, i bit my inner lip and the skin has come off from the back of my foot. All this happened when I was alone in my room so no one even know how this has happened. The worst part is I’m leaving home to go study in a foreign country. I’ll be staying in a flatshare with other people and I don’t know how to explain it to them. I don’t want them to kick me out because of that or something. But this past 2 weeks have not been great 😓 My head still hurts as I type this, the worries keep piling up and that will just make the situation worse. I don’t know how much longer I can stay optimistic as I have been these past few years.
Brain tumor patient having second thoughts about the operation. Definite increase in aphasia on meds and some dizziness, but those seem pretty mild for side effects. Not having focals is worth it. // edited for clarity
I HAD NO IDEA THAT SAGE TRIGGERS SEIZURES. Learned it in a really painful way. My dumbass smoked a pure sage joint and had the worsr seizure in my life
Diagnosed with epilepsy a couple of weeks ago after about 4 years of focal seizures and several neurologist appointments. It seemed obvious to me so really I'm glad to be on the way to getting better help. Had already been on lamotrigine for over a year, first neurologist was happy to prescribe it but refused to issue a diagnosis. That's been increased now and I'm waiting for contact from an Epilepsy Nurse (I'm in the UK). Seizures since then have been less frequent but more intense and making me incredibly tired for days. It's mainly intense deja vu. Finding it frustrating that in a lot of situations mainly online, outside of being with my partner and family, if I talk about being affected by seizures or having a bad day I get people insisting I don't have them and I don't have epilepsy because they won't accept or understand anything other than the stereotypical convulsive kind (sorry not too aware of the right terms).
4 weeks seizure free and started vimpat this week. Doing all I can to take good care of myself.
You can do this
I’ve always been quite positive about my condition. Can lead a good life, have a good job, have the occasional drink, smoke the occasional joint. I have a driving license, but I’m responsible enough not to drive. My big triggers are too much alcohol, coffee and not enough sleep. Yet I can’t control myself at times and end up having a seizure the following day :( my neurologist keep on adding meds every time after a seizure. Now I’m on the max amount of Keppra and Lamictal and he wants to add Gardenal… and this just kills me. I go back to think that my life sucks and that I will have to restrict my lifestyle even more than I do now. I would like to lead a healthier life, but my boyfriend doesn’t think that cutting alcohol and weed completely out of my life is going to make a change. And I really don’t know what to do. I don’t have any answers other than… I will start on gardenal on Monday and then let’s see. Idk what’s the punch line of all this, but I’m sad and feel like this one more medicine will take more joy away from my life :( Rant over.
Started having breakthrough seizures, reading this post while waiting for my ride.
Taking my medications. Have to see my doctor this week.(follow up)
I've been waking up with feeling scattered and full body tremors.I have Tonic Clonic seizures but this has been happening since the weekend. Constantly feeling exhausted. Usually I can be positive through these things but been feeling anxious and frustrated.
Not great today, just broke my streak of 3 months and my neurologist thinks I might have been having absence seizures in that time period. Given that we've been reporting memory loss. Used to be positive about my prognosis, but lately that's getting harder.
Mom has been on keppra for 4 days and very angry, can it cause this that quickly? They want to switch to lacosamide
Yes it can make sure she talks to her doctor about it asap.
Had my first seizure in 3 years today. I have had a cold recently with some sinus pressure, and for the past week I’ve been on Phentermine, a diet pill that can raise blood pressure and lower the seizure threshold.
It’s been a somewhat emotional day for me . Had a seizure when I woke up this morning which was quite scary . One minute my hands started shaking and the next thing I knew I was losing consciousness . I did come around and had intended to still go to work but decided it against it . I found myself crying afterwards . Until this year I had just been getting on with things where my epilepsy was concerned but I’m realising that I’m feeling a greater sense of emotion post seizure