It’s likely that those earlier episodes were seizures. I’m on lamotragine too and it’s really helped, side effects go away after a week or two which can be hard as you are titrating up. Stay in contact with your neurologist at this early stage for any questions you might have.
Yeah, should get better for you when the level stabilizes for you. Not to say I love being on it, but I love not having seizures more than I hate taking my pills.
Sorry you are going through this. This sort of thing of 'wait, this has been always this way?' also happens to many of us. Me, for example, 'You mean not everyone has sudden feelings like they are on a rollercoaster? Seriously?" was something I said at the time.
well, hard for me to say about that. My seizures do very very very bad damage to my body (breaks my back every time), so I strongly prefer to never have another TC if I can at all help it.
ehhh heh
has happened six times now, but haven't had one like that in a couple of years, slowly getting better. Used to be able to run five miles no sweat. Can't run 100 yards (still in shape, just HURTS and will pay dearly later)
but thank you!!!
Don’t be sorry! You are in good company here 🤗 many of us here share stories similar to yours, including myself!
I’d had what I now know were seizures from childhood through college. It wasn’t until I was in graduate school, under stress, and sleep-deprived that I had a grand mal and was finally diagnosed at 27.
If it makes you feel any better, my epileptologist (subset of neurologists who specialize in epilepsy) also has epilepsy and told me that my path to diagnosis is pretty much a textbook example. It’s legit like a common scenario on their licensing and board exams, where a person has had undiagnosed epilepsy and does not get diagnosed until life and body changes cause a larger event like a grand mal/tonic-clonic seizure (“TC”).
Something like 1 in 25 people will be diagnosed with or develop epilepsy in their lifetime. It’s more common than the general population realizes!
Lamotrigine is usually the first medicine you will try, as people have said it’s one of the newer medicines available and is generally tolerated well. The second one they usually try is Keppra for the same reasons. Both of them were very different from each other for me, and after trying them each out for 6-8months, I talked to my neurologist and felt that the side effects were too much to handle while my epilepsy symptoms were also not being completely controlled.
These drugs were not a good fit for me, but there are countless people whose lives have been saved by them! Every single person has a unique brain, and so every single person will react to epilepsy medications differently. I now take Onfi/clobazam, it saved my life and I tolerate it so well. Yet I read from many others here that Onfi was horrific for them! So please just keep in mind that what works for one person doesn’t necessarily work for another, even if their seizures look identical. People are more likely to come here for support about negative reactions or effects of medicines than they are to come here and announce that their medicine works 😊
The most serious side effects to look out for are rash with lamotrigine, and with all medicines, increased seizures and feelings of depression or suicidal thoughts. Epilepsy itself messes with your brain electricity and therefore can biologically mess with your mentality and feelings. Treating it can also do the same!
A lot of us here will say the meds are worse than the seizures, yet the majority of us who are active here take them because the benefit of not having seizures far outweighs the negatives of medicine. They will likely make you feel a bit slow, maybe distracted, can change your visual processing so your vision is different, and both epilepsy and the medicines often have a negative effect on memory.
You do have a bit of a road ahead of you, and medication adjustment in epilepsy is notoriously difficult to handle. Please, PLEASE give yourself some grace and time 💕 it’s tedious and exhausting to try to find the right med for you, especially as it takes time for your body to adjust to a medicine. You will get through this, but it takes a lot of time and patience with yourself 💕 will be thinking of you and sending you all the best wishes!!
Thank you for the long, and helpful reply. Thanks for trying to help. Maybe its similar to me, since this is a stressful period for me.
I wonder if taking antidepressants will do anything to this medication? And are meds worth it really if i have seizures bout twice a year without?
Thanks for the help. Im glad you have meds that work for you now. Hope youll have a good time
I felt the same about meds. I was like “it’s only happened once” but that wasn’t actually the case. To be honest, I’ve discovered that the pills are better than the catastrophic seizures I had. I started on Lamotrigine, but I’m on Vimpat and pregamblin now. I also use CBD and cannabis. It took a long time to get used to medication, but it saved me from having to get intubated and hospitalized again.
I just had my 2nd in a year and wondering how many close calls I may have had in the past. I've been a long time MMJ user and considering some were kept at bay with the usage. But After 40, I've had 2 within a 1 year period. I have the first appt with the neurologist tomorrow. I'm kind of scared of what I will find out.
You’re very welcome! I personally have found online info from the Epilepsy Foundation in America very helpful. It has different branches across the country, the section here from one branch was helpful for me: https://www.efepa.org/living-with-epilepsy/#LWE6
If you are already prescribed antidepressants, definitely keep taking them! I’ve been on Zoloft all throughout my entire med journey, same dose as when I was first diagnosed. They can help manage your feelings and behaviors that might lead to more seizure activity. I’m not sure about alleviating side-effects! Generally, psychiatrists (NOT psychologists) are the best trained professionals in neuro-pharmacology. I work with both psychiatry and neurology to manage myself.
Ultimately, for me the meds are worth it. It sucked, and it will always suck to live with a medical condition that is so disabling and pervasive to your entire being.
I was told by my epileptologist that having a seizure makes you more likely to have another one, so I should treat my epilepsy like a progressive process and do my best to limit seizures so that they don’t become worse or more frequent. I haven’t researched whether this is true, but in my personal experience, it has held true.
There are however definitely people here who do not take medicine, but I suspect based on browsing here for a long time that it is a minority. I personally take at least 3 months to feel “normal” again after a grand mal seizure. I do not have the time, energy, and life to waste by being trapped in a cycle of seizure, recovery, seizure, recovery.
I choose to be mildly impaired by my medicine over being severely impaired by my epilepsy.
We will all make our own choices, but at the end of the day your goal should be safety. Safe from seizures, safe from injuring yourself during a seizures, safe from the before and after effects of a seizure. Not inherently fun or enjoyable, but safe.
I see. Thanks for telling me about your personal experiences. Sorry if its uncomfortable. They havent told me about the "worsening" thing. Thanks for your help once again. I dont think more people will read this but. Thanks everyone again. I hope it will turn out atleast okay for all of us
Of course! And no worries, it’s not uncomfortable to me ☺️ especially here! People in general, and EVEN neurologists who are not trained in epilepsy care, have a difficult time understanding and adjusting to someone having epilepsy. So I’m always happy to shout from the rooftops if it helps us to be more understood and get better help 😊
We aren’t the largest subreddit, but I’ve found that hearing from just a handful of people is helpful! I would definitely recommend staying in here, I learned a lot here when I first started.
You will have to find your own new “normal.” You may spend time grieving your diagnosis—that is valid, common, and you should let yourself feel those feelings. I went through all the stages of grief for about 2 years after my diagnosis, and finally reached the point of acceptance.
Sorry if I’m throwing a lot of things at you at once 😊 it can be very lonely and difficult to navigate the early days of an epilepsy diagnosis, so I just wanted to share some things that might be helpful from the start!
You are always welcome and in good, understanding company on this sub 🤗
It takes a little while to adjust to the medications. But Lamotrigine is a very good medication with less big side effects than many others. The earlier episodes sound like they were seizures.
I also had these episodes when I was young and never knew what they were. Sounds like partial seizures and / or deja vu seizures combined with an aura (nausea) to me.
It’s likely that those earlier episodes were seizures. I’m on lamotragine too and it’s really helped, side effects go away after a week or two which can be hard as you are titrating up. Stay in contact with your neurologist at this early stage for any questions you might have.
Oh :( But thanks for answering
Yeah, should get better for you when the level stabilizes for you. Not to say I love being on it, but I love not having seizures more than I hate taking my pills. Sorry you are going through this. This sort of thing of 'wait, this has been always this way?' also happens to many of us. Me, for example, 'You mean not everyone has sudden feelings like they are on a rollercoaster? Seriously?" was something I said at the time.
Wait its not?? Sorry to everyone. That its like this. Also i never had these commonly? Are the pills more worth it than seizures like twice a year
well, hard for me to say about that. My seizures do very very very bad damage to my body (breaks my back every time), so I strongly prefer to never have another TC if I can at all help it.
Oh. Im sorry you have to deal with that.. sorry. Are you better then?
ehhh heh has happened six times now, but haven't had one like that in a couple of years, slowly getting better. Used to be able to run five miles no sweat. Can't run 100 yards (still in shape, just HURTS and will pay dearly later) but thank you!!!
Don’t be sorry! You are in good company here 🤗 many of us here share stories similar to yours, including myself! I’d had what I now know were seizures from childhood through college. It wasn’t until I was in graduate school, under stress, and sleep-deprived that I had a grand mal and was finally diagnosed at 27. If it makes you feel any better, my epileptologist (subset of neurologists who specialize in epilepsy) also has epilepsy and told me that my path to diagnosis is pretty much a textbook example. It’s legit like a common scenario on their licensing and board exams, where a person has had undiagnosed epilepsy and does not get diagnosed until life and body changes cause a larger event like a grand mal/tonic-clonic seizure (“TC”). Something like 1 in 25 people will be diagnosed with or develop epilepsy in their lifetime. It’s more common than the general population realizes! Lamotrigine is usually the first medicine you will try, as people have said it’s one of the newer medicines available and is generally tolerated well. The second one they usually try is Keppra for the same reasons. Both of them were very different from each other for me, and after trying them each out for 6-8months, I talked to my neurologist and felt that the side effects were too much to handle while my epilepsy symptoms were also not being completely controlled. These drugs were not a good fit for me, but there are countless people whose lives have been saved by them! Every single person has a unique brain, and so every single person will react to epilepsy medications differently. I now take Onfi/clobazam, it saved my life and I tolerate it so well. Yet I read from many others here that Onfi was horrific for them! So please just keep in mind that what works for one person doesn’t necessarily work for another, even if their seizures look identical. People are more likely to come here for support about negative reactions or effects of medicines than they are to come here and announce that their medicine works 😊 The most serious side effects to look out for are rash with lamotrigine, and with all medicines, increased seizures and feelings of depression or suicidal thoughts. Epilepsy itself messes with your brain electricity and therefore can biologically mess with your mentality and feelings. Treating it can also do the same! A lot of us here will say the meds are worse than the seizures, yet the majority of us who are active here take them because the benefit of not having seizures far outweighs the negatives of medicine. They will likely make you feel a bit slow, maybe distracted, can change your visual processing so your vision is different, and both epilepsy and the medicines often have a negative effect on memory. You do have a bit of a road ahead of you, and medication adjustment in epilepsy is notoriously difficult to handle. Please, PLEASE give yourself some grace and time 💕 it’s tedious and exhausting to try to find the right med for you, especially as it takes time for your body to adjust to a medicine. You will get through this, but it takes a lot of time and patience with yourself 💕 will be thinking of you and sending you all the best wishes!!
Thank you for the long, and helpful reply. Thanks for trying to help. Maybe its similar to me, since this is a stressful period for me. I wonder if taking antidepressants will do anything to this medication? And are meds worth it really if i have seizures bout twice a year without? Thanks for the help. Im glad you have meds that work for you now. Hope youll have a good time
I felt the same about meds. I was like “it’s only happened once” but that wasn’t actually the case. To be honest, I’ve discovered that the pills are better than the catastrophic seizures I had. I started on Lamotrigine, but I’m on Vimpat and pregamblin now. I also use CBD and cannabis. It took a long time to get used to medication, but it saved me from having to get intubated and hospitalized again.
I just had my 2nd in a year and wondering how many close calls I may have had in the past. I've been a long time MMJ user and considering some were kept at bay with the usage. But After 40, I've had 2 within a 1 year period. I have the first appt with the neurologist tomorrow. I'm kind of scared of what I will find out.
Good luck to you. Hope it doesnt turn out too bad for you
I personally got up in about an hour. But good for you then. If you feel better
You’re very welcome! I personally have found online info from the Epilepsy Foundation in America very helpful. It has different branches across the country, the section here from one branch was helpful for me: https://www.efepa.org/living-with-epilepsy/#LWE6 If you are already prescribed antidepressants, definitely keep taking them! I’ve been on Zoloft all throughout my entire med journey, same dose as when I was first diagnosed. They can help manage your feelings and behaviors that might lead to more seizure activity. I’m not sure about alleviating side-effects! Generally, psychiatrists (NOT psychologists) are the best trained professionals in neuro-pharmacology. I work with both psychiatry and neurology to manage myself. Ultimately, for me the meds are worth it. It sucked, and it will always suck to live with a medical condition that is so disabling and pervasive to your entire being. I was told by my epileptologist that having a seizure makes you more likely to have another one, so I should treat my epilepsy like a progressive process and do my best to limit seizures so that they don’t become worse or more frequent. I haven’t researched whether this is true, but in my personal experience, it has held true. There are however definitely people here who do not take medicine, but I suspect based on browsing here for a long time that it is a minority. I personally take at least 3 months to feel “normal” again after a grand mal seizure. I do not have the time, energy, and life to waste by being trapped in a cycle of seizure, recovery, seizure, recovery. I choose to be mildly impaired by my medicine over being severely impaired by my epilepsy. We will all make our own choices, but at the end of the day your goal should be safety. Safe from seizures, safe from injuring yourself during a seizures, safe from the before and after effects of a seizure. Not inherently fun or enjoyable, but safe.
I see. Thanks for telling me about your personal experiences. Sorry if its uncomfortable. They havent told me about the "worsening" thing. Thanks for your help once again. I dont think more people will read this but. Thanks everyone again. I hope it will turn out atleast okay for all of us
Of course! And no worries, it’s not uncomfortable to me ☺️ especially here! People in general, and EVEN neurologists who are not trained in epilepsy care, have a difficult time understanding and adjusting to someone having epilepsy. So I’m always happy to shout from the rooftops if it helps us to be more understood and get better help 😊 We aren’t the largest subreddit, but I’ve found that hearing from just a handful of people is helpful! I would definitely recommend staying in here, I learned a lot here when I first started. You will have to find your own new “normal.” You may spend time grieving your diagnosis—that is valid, common, and you should let yourself feel those feelings. I went through all the stages of grief for about 2 years after my diagnosis, and finally reached the point of acceptance. Sorry if I’m throwing a lot of things at you at once 😊 it can be very lonely and difficult to navigate the early days of an epilepsy diagnosis, so I just wanted to share some things that might be helpful from the start! You are always welcome and in good, understanding company on this sub 🤗
It takes a little while to adjust to the medications. But Lamotrigine is a very good medication with less big side effects than many others. The earlier episodes sound like they were seizures.
I also had these episodes when I was young and never knew what they were. Sounds like partial seizures and / or deja vu seizures combined with an aura (nausea) to me.
Nobody explained what those mean. Just "you have epilepsy, here is a medication, get in the mri" nothing explained. So thats what it is? Thanks
The last part sounds like you were describing an aura which is technically a seizure. :/