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I Am So Sorry I Am Having Real Trouble Wording Things Right And I May Have Caused Some Confusion. Let Me Try To Correct What I Wrote.
I was diagnosed with grandmals and petimals at age 7. The seizures stated lasting longer than they should have. The grandmals could last up to 40 minutes w/15 minute break,& continue for hours. The petimals every few seconds. Within 5 seconds I would seize for 3 seconds 2 seconds normal and start again. This lasts for a minimum of 3 days. Which i did not know it was status epileptus. Which was diagnosed 2 weeks ago. Catatonic episodes still possible. The seizures are generalized and… read more
Alison,
I was diagnosed and began taking the older AEDs at 7. My parents knew I would not deliberately ignore my 2nd Grade Teacher. I had taken all known medications by my mid 20s, Some of them contributed to my Osteoperosis. My Doctor wants me to get all the Calcium from my food, but do take Vitamin D3. The Epidiolex can cause very loose bowels. It can be difficult, but I would rather be controlled and deal with it.
I now have 3 neurologist i have an appointment with one of them about every 5-6 weeks.
Do you have a neurologist? How often do you see him/her? Do you tell you doctor about how/what happen before and after? I have Mychart, a portal app that let me stay connected to my doctors. My doctors will call me in immediately to check my system out. I go to my neurologist every three months. YOU MUST TELL YOUR DOCTOR EVERYTHING, SO THEY CAN FIND THE BEST TREATMENT FOR YOU.
It sounds like you have been living with severe epilepsy involving both grand mal (tonic-clonic) and petit mal (absence) seizures for most of your life. Status epilepticus, where seizures last a very long time or occur in clusters, can be life-threatening. I cannot provide medical advice or a prognosis. However, there are t Show Full Answer
Do you have a good Neurologist and Epileptologist? Ask them. Status Epilepticus is very dangerous. I think with that you need to be in the ER.
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