How do I avoid biting tongue during seizures. My husband has these attacks and it's painful to even eat. He takes carbamezipine drugs

[africanken]

My husband got herpes simplex encephalitis 7years ago. It's not been an easy journey. His cognitive ability has been affected, he's depressed, memory loss and in 2018 he started having epileptic seizures. He has not been working since he lost his job. How do I support him.

[Paula-38]

Hi africanken! I used to have epileptic seizures as a child and if my Mum ''had have been" here now, , I'm sure she would have empathized with you a lot! I used to be on Carbamazepine with 2 other drugs after contracting herpes simplex encephalitis way back in 1977, but in 1986, they changed my medication(s) over which did help a lot!' I grew up with these problems.

But it was far from easy for my Mum in particular who passed away "18 months ago next month", because every time I had seizures, she used to have panic attacks and would start shouting which used to 'frighten the living daylight out of me', but my Dad was quiet and that was better for me as it would be best for your husband's sake, if you didn't shout out in fear, and I can understand that it must be very difficult to keep quiet in these situations, I know it is shocking to see your husband havimg seizures, and it's a natural reaction, but not showing that you are shocked or "panic stricken", would benefit him more because it would better for him a "quiet environment ", if that makes sense? I was also suffering from depression as a child, but nobody could see that and I wasn't diagnosed at the time either, so I can well imagine how lofe must be for your husband. At least one goid thing is tgat knowing that he is depressed is a tarting point whereas with me nobody knew.

I am SO sorry to hear that your husband-s memory has been afdected SO much. Aww.

I'm sure that 'some of my cognitive function' has been affected but I don't know how much of your husband's cognition has been affected though.

[africanken in reply to Paula-38]

Thank you Paula-38 for encouraging me. Do you still have the seizures? You talked of your drugs being changed from carbamezipine to which drugs? The seizures really scares me so much and my 2kids are worried too. Thanks once more

[Paula-38 in reply to africanken]

I have been free for 26 years now.

I take Phenytoin Sodium 'formerly known as Epanutin ' wi th Clonazepam.

.

[africanken in reply to Paula-38]

That's wonderful news... He also takes phenytoin at night. Hope the seizures disappear one day completely

[Paula-38 in reply to africanken]

I take 150mg of phenytoin TWICE DAILY, it doesn't happen overnight,

I started taking it at age 10,, then I went a year free, my next one was at age 13 and my last one at age 17, trying to avoid the "triggers" that you are aware of that trigger off your husband's seizures as well. This might sound a bit daunting and yes it is a long time, but apparently it DOES take time and patience. Hope this gives you an idea.

Hpw many mg does your husband take?