Mother of infant with intractable epilepsy

Hi All,

My son was born with intractable epilepsy. At birth he had some respiratory distress so was put into NeoNatal ICU, where the nurses noticed he did strange twitching movements. 9 days later he had his first Tonic Clonic seizure.

After 2 months in the hospital, an MRI, numerous EEG's, 2 lumbar punctures, the possible diagnosis is a rare form of epilepsy called Early Myoclonic Epilepsy (EME), with the outcome not being very good.

He has daily seizures as he is unresponsive to medicines. Currently he is on Topamax, Rivotril, Keppra and we are weaning him off Phenabarbitone.

When he has the grand mal seizures, he screams / shouts (he is only 12 weeks old), sometimes becoming very high pitched screaming. What i'd like to know is does it hurt when having a grand mal seizure, as he looks and sounds like he is in pain but I have no way of knowing.

4 Replies

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  • I become unconscious, after the seizure i will have a severe headache, painful tongue from biting and sometimes if I had hit some objects.

  • hi, i was diagnosed with epilepsy at age 12 and have been having gran mall seizures for a long time before i saw the rite neurologist who put me on the correct meds. regarding your question, in my experience no pain is felt during a seizure. i am told that i also scream as if in pain during a seizure but i assure you that the only pain experienced is the stiffness of my muscles after the seizure which lasts for no longer than a few hours. i have done quite a bit of research regarding epilepsy and although im no expert i have learnt that in some cases sufferers of epilepsy can outgrow epilepsy. Godd bless and stay strong

  • I have had epilepsy since the age of 16, and am now 56 years of age. From the age of 17, I suffered from both Petit Mal and Grand Mal seizures... Today I am well controlled. As Klyndywel has stated, I also do not feel pain during the process of a Grand Mal (Tonic Clonic) seizure, but afterwards muscles are sore for days, and obviously a headache is present. My instant reaction is to burst into tears when I feel a seizure coming on, but don't necessarily feel any pain during its process. Obviously, if injured, the pain is felt afterwards.

  • The actual grand mal itself - he wont have any idea about - even if he is making noises and looking somewhat conscious then unconscious. The bit that is distressing is the build up. The jerking sensations are not pleasant prior to the onset. Imagine someone jumping out at you unexpectedly (your reaction) and you jolting with adrenaline - that's the feeling (best way I can describe) then confusion and panic fearing the next one or worse. The actual grand mal itself from my experience is completely unconscious once my limbs have stiffened and arms raised. This feeling is also not pleasant, but not painful, just weird! like flexing your bicep, but multiply that feeling throughout your body. Just remember to keep calm, remove hazards away from him rather than him away from hazards if at all possible, place something under his head like a thick jumper or thin cushion if hitting head on hard surface and never hold the tongue or mess in the mouth etc - leave them to it and if concerned call 999, keep with them to watch them breathe, they could go up to 15 seconds without breathing; once beyond this hit back with flat palm until it commences. Never attempt to move them - unless being sick during seizure - then recovery position only. When he is older a no sugar high fat diet will help him with any luck :) God bless

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