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Screaming when regaining conciousness
I have had epilepsy all my life (I'm 65 now) but with my more recent grand mals I have been screaming just as I regain consciousness. Has anyone else experienced this? The last one was during the night a couple of weeks ago. My usual aura woke me up so I had just enough time to wake my husband. The whole thing lasted a few minutes & he was very shaken by what happened. He said that it was like some sort of psychotic episode at the end of it as I was screaming & rambling. We have new neighbours so heaven only knows what they must have been thinking if they heard it, lol. I now feel trapped as I'm worried about going away anywhere, Can you imagine being in a hotel & being woken up by what sounds like someone being murdered?! Even staying with relatives is a no, no for me at the moment. Can anyone else relate to any of this?
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@sweetcheeks33
I embrace my life fully, and while I sometimes experience postictal aggression, it’s just part of my journey. My neighbor has heard my epilepsy cry—a loud moan that occurs when the contractions force the air from the lungs and passes by the vocal cords creating the noise. I don’t feel embarrassed about it; in fact, I appreciate the concern from those who call or come over.
I once had a seizure that led me to fall through a wall into the next duplex—no big deal. Epilepsy does not define me; I live on my own terms. If a seizure happens, it happens. It’s not my responsibility if someone feels disturbed or scared by it; they need to understand that it’s their issue, not mine. For 59 years, I’ve refused to let epilepsy dictate my life. I take pride in who I am and what I can do, unashamed and unembarrassed. I go where I want, do what I want, and live life to the fullest, always in control of my path—not my condition. Epilepsy can destroy your quality of life if you allow it.
Take care,
Jake
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7 ReactionsIt was pretty common for me to have a reaction like that too when waking from a grand mal. I think most people would be concerned for your safety & would completely understand.
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3 ReactionsHi Jake, thank you. You are quite right that we should live our lives as normally as we can. Up until now very few people even knew I have epilepsy, it was on a need to know basis only as my seizures were well controlled. If I felt a bit off then I would stay at home just like anyone does if they're not feeling well. However, the amount & severity has now changed though. Since the pandemic I have had about 6 grand mals compared to the odd rare one once in a blue moon previously. If it was just the increase I could cope with that, unfortunately the screaming is like I'm being attacked. Its also the first major one I've had at night which is very concerning. My neurologist is trying to arrange an appt with a specialist epilepsy nurse for me until my next appt next April. To quote Gloria Gaynor 'I will survive!!'
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