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JME
Tue, 12/19/2017 - 18:26I'm 19 and I had 1 confirmed seizure then 1 unwitnessed but suspected seizure. I believe they were both tonic clonic seizures as well.The first seizure was the day before I moved into college- which I had been debating if I even wanted to go anymore (stressed me out a lot.) At the hospital I had a CT scan and blood work and the whole run down- everything came back perfect.
My second (suspected) seizure happened at college alone in my dorm room. I had previously gone home because my grandma died (very stressful) and only came back because I had a speech to do. I took a nap that night and woke up with my tongue bitten and I was super confused. I got an EEG done and had 1 abnormality during the hyperventilating part- however the doctor then said that that could have been due to me moving.
Then I got an MRI with and without contrast and that came back clear. Then I went to see a neurologist who said it sounds like JME- but wants an EEG done by him first. That EEG was around 30 minutes. The doctor scanned through the whole test within 40 seconds in front of us, and (based on a report of the actual test AND an abnormality less than a millisecond long) jumped to tell me I have JME for sure and I'd have to essentially flip my life around (go to bed regularly every night and never drink again)- which for a 19 female is pretty overwhelming seeing how I am a very outgoing, spontaneous person. I have a history of anxiety (diagnosed with generalized anxiety) however my doctor refuses to count that into consideration saying that people don't have seizures when they're just stressed out.
I went home more than upset and my boyfriend who had witnessed the only confirmed seizure was PISSED. The doctor called backed when we got home saying he was thinking about me the whole day and wants to do a 48 hour EEG instead. I've yet to do that and I'm nervous.
So my question- 1. In my whole 19 years of living, socially drinking, not always getting a full 8 hour sleep- that just NOW am I experiencing this.
2. How can a doctor diagnose me based on 1 seizure, 1 unwitnessed suspected seizure, and 2 single abnormal (less than a milisecond each) EEG waves, to having epilepsy when I've lived my life 100% fine for 19 years?
This has put a hold on my life seeing as how I have anxiety already. I can't drive, I can't do anything without being scared of magically having a seizure. Please help
Comments
The Epilepsy Foundation has
Submitted by birdman on Tue, 2017-12-19 - 20:51
The Epilepsy Foundation has good info on JME:CONTENT HIGHLIGHTS
- Most frequently encountered and most common of the generalized epilepsy syndromes to emerge in mid-to-late childhood.
- First seizure starts between 5 and 16 years old followed by myoclonic jerks about 1 to 9 years later.
- Generalized tonic-clonic seizures are reported in nearly all patients.
- It's genetically determined.
- EEG is the most important diagnostic test.
- Note that first seizures can start in mid teens. Also since it is genetically determined it doesn't take an accident or major event to bring them on. If you have JME then you may be predisposed to having seizures and it may only take some extra stress and sleep deprivation to get them started.
- Most frequently encountered and most common of the generalized epilepsy syndromes to emerge in mid-to-late childhood.
- First seizure starts between 5 and 16 years old followed by myoclonic jerks about 1 to 9 years later.
- Generalized tonic-clonic seizures are reported in nearly all patients.
- It's genetically determined.
- EEG is the most important diagnostic test.
- Note that first seizures can start in mid teens. Also since it is genetically determined it doesn't take an accident or major event to bring them on. If you have JME then you may be predisposed to having seizures and it may only take some extra stress and sleep deprivation to get them started.
I think it would help you to
Submitted by birdman on Tue, 2017-12-19 - 20:43
I think it would help you to understand that anyone can have a seizure but some of us are more prone than others. Drug overdose and head injuries are some things that can cause anyone to have a seizure. Epilepsy is the name given to us who are more vulnerable to having seizures than the average person. Doctors did a CT to look for possible causes of the seizures but found nothing so I imagine they still do not know a cause for your seizure. Maybe you have been vulnerable to seizures for many years but now the stress, loss sleep, and drinking bring the seizures out.