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Extreme body pain and pain spikes after seizures.
My 25 year old son had two seizures in one day back in July, 2023 for the first time. He had extreme body pain and it seemed to be getting slightly better, then in early November he had another seizure. Again he is in extreme pain. Is this a normal reaction to seizures and if so, does it get better? Are there any medications that can help? He also has memory issues and explains it as a scattered brain. Any help would be appreciated as our neurologist has no explanations.
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@karenandkiell
I'm sorry to hear your son has Epilepsy. 16 is a terrible age to get it because of driving restrictions.
I assume your son is having Generalized Tonic-Clonic seizures which can be quite intense. Because seizure muscle contractions are so powerful muscle pain and headaches in some people varying from mild to severe is quite common. From what I remember, my pain was mostly aching and I wouldn’t say it was severe. Whether your son’s pain improves only time will tell. My seizures ranged from mild to severe and although I don’t remember I would assume the level of pain varied accordingly.
If your son is on anti-seizure meds I'd like to suggest if he is taking generics always use the same manufacturer. Also, my last Neurologist who was fantastic died but he refused to give generic seizure meds unless the patients insisted. He preferred time-release meds. When I started taking time-release meds he gave me my seizures stopped. Coincidence? perhaps.
If your Neurologist “has no explanations” it may be time for a new one. Did the Neurologist change the dose or medication or add another medication?
What meds is he taking? Do you know your son’s diagnosis?
I hope you’re keeping a seizure journal?
Best of luck to your family,
Jake
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2 ReactionsHi @karenandkiell
I am very sorry for your son. I have temporal lobe epilepsy with partial complex seizures and drug-resistant epilepsy (1/3 of people with epilepsy have what is called refractory epilepsy). Even in those partial seizures, I have experienced much pain after a seizure while taking AEDs (anti-convulsant medication). But when I had my first tonic-clonic seizure experience, the pain was much much worse and took more time to go away. It is something quite common after a seizure. I still have seizures, but my pain has almost disappeared since I have been treated with medical cannabis.
I very much agree with @jakedduck1 , if your neurologist has no explanations it is time to look for a new one. Try to go to an epileptologist instead of just a neurologist, Being treated by an epileptologist has made a great difference in my well-being.
Memory is affected by epilepsy, something also common. For this reason, it is important to stop the seizures, as my epileptologist has said that the seizures do undermine our cognitive reserve.
I do also recommend learning more about epilepsy. As @tonyde has well mentioned in another post, do your own research and don't be afraid to quiz your doctor. The Epilepsy Foundation has a great website and has been my school to learn more about epilepsy and my type.
Wishing you better days!
Chris (Santosha)
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