MountainMama
New
- Messages
- 19
- Reaction score
- 0
- Points
- 0
Hi everyone! I'm new here and I was recently diagnosed with complex partial seizures/symptomatic epilepsy. I had a major neurological event early this summer that began with what we thought was a stroke but ended up being a hemiplegic migraine without an actual headache. It was followed by clusters of what turned out to be seizures and I spent almost a month mostly out of it (confused, suffering extreme vertigo, able to read, but unable to understand what the words I was reading meant, sleeping 14-20 hours a day, suffering bouts of extreme and irrational panic for no reason, etc.). These symptoms eventually faded, but everything is different now than it was before.
I am still trying to wrap my head around what all that means and what it means for me personally. I can't figure out when I am having seizures (outside of the event described above) and I am currently unable to distinguish between what is seizure related and what is related to migraines or cluster headaches. It has been incredibly frustrating.
I started taking AEDs at the end of June and while they made my migraines substantially worse, (still trying to get that under control) they completely and immediately eliminated a slew of mental health issues that have plagued me since early childhood. My neurologist now believes thise issues were probably manifestations of temporal lobe seizures. I would like to believe that means the seizures are controlled, but I still have periods where I get nauseated, my ears will ring and everything feels slow and cloudy. I feel very ill and tired following these episodes, which makes me suspicious that I may still be experiencing seizures or seizure like activity.
Anyway, the whole experience has been strange and disorienting (literally and figuratively!) but I'm greatful that it is slowly getting sorted out. Looking forward to meeting everyone else here and getting to talk to other people who understand what I am going through.
I am still trying to wrap my head around what all that means and what it means for me personally. I can't figure out when I am having seizures (outside of the event described above) and I am currently unable to distinguish between what is seizure related and what is related to migraines or cluster headaches. It has been incredibly frustrating.
I started taking AEDs at the end of June and while they made my migraines substantially worse, (still trying to get that under control) they completely and immediately eliminated a slew of mental health issues that have plagued me since early childhood. My neurologist now believes thise issues were probably manifestations of temporal lobe seizures. I would like to believe that means the seizures are controlled, but I still have periods where I get nauseated, my ears will ring and everything feels slow and cloudy. I feel very ill and tired following these episodes, which makes me suspicious that I may still be experiencing seizures or seizure like activity.
Anyway, the whole experience has been strange and disorienting (literally and figuratively!) but I'm greatful that it is slowly getting sorted out. Looking forward to meeting everyone else here and getting to talk to other people who understand what I am going through.