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DiscussionBeen to an Epilepsy Monitoring Unit? What’s it like?
Epilepsy & Seizures | Last Active: Jan 24, 2023 | Replies (42)Comment receiving replies
Replies to "I was young when i was monitored ,around 1960 or so so things must be diferent..."
Had other test at BostonChildrens Hospital,when i was young.For awhile think there was the theory in might outgrow it as a kid ,then worry myself sickgoing to school and the knowledge i had grand mals and majority of people didnt realy understand epilepsy..Back then seems like o few year one med like phenobarbital have troubles switch to something else like tegreto!.Late 80s started on dilantin .Have had troubles with going all day trying to get memory back and sometimes 2 to 3 days of severe migranes..plus all the other things like theconvultions ,my poor head and ribs,been banged up a lot and waking up wet when your young and togue got it too..For a long time gave up on neurologist and just used family doctor.Was on dilantin from late80s till this year,Started getting serious grand mals again,t one point 5 in 6 weeks,twice taken to hospital by ambulance,once right in front of my 9 yearold grandson,glad it dint bother him too much..Have had seizures in front of my 3 children and now 3 grand kids.hate having my family seeing me lime that ,now on keppra and vimpat.and see a neurologist again.Even joined a epilepsy group ,epilepsy is a subject thats not something that people talk about ,at least i havent met anyonehope the people in group are open on subect.at i think i need talk about it.
Colleen,when i was younger not much done sa far as epilepsy ,would see a neurologist about every months.when meds stopped working doctor just put me other meds until tye right one found..For some reason myseizures just leave my memory..I usualy lose 3 or 4 days,first day geat my memory backslowly,days 2 and 3 rea!y bad headaches.Even in septembsr,oct. had 5 grand mals in 6 weeks had to switch meds and add vimpat can only have a few memories on one.,Had a lot of grand mals in over 55 years but only a few little memories.i seriously believe my mind erased those times on pupose,thats a lot of 3 and 4 day gaps .maybe my minds way of helping me.seizures bad enough at least no memories to scare me.
The 1960s - that is a long time ago! Has it ever been suggested to monitor your seizure activity again? What your your after effects of a seizure and how do you cope with them?