My brother is 30 years old and started having seizures in his early 20

@kristinalynn
I'm sorry to hear your brother has seizures. Are all his seizures nocturnal or do they happen during waking hours too?
Can you describe why he was taken to the hospital? Did it last longer/different in some way, more severe than usual? A seizure condition known as status epilepticus where tonic clonic seizures don't stop on there own is an emergency and requires immediate medical intervention. Although this type of seizure is rare, I have a history of them including being put in induced comas to stop the seizure activity. It's not usually necessary to take a seizure patient to the hospital, they usually recover just fine. A seizure patient may appear to be suffering but experiencing pain during a seizure is extremely rare, if it happens at all. After the seizure your body may ache from the muscle contractions and bitting of the tongue and or cheeks or other injuries that may have happened. It's important not to restrain a person having a seizure, but to protect them from danger. Now days they claim nothing should be put into the mouth to protect the tongue and cheeks from damage. Back in the day, they used to put several tongue depressors together and wrap them and cloth tape and tape them to a seizure patients bed in the hospital. Later came plastic seizure sticks. I suspect the reason they now say not to put anything in the mouth is because people may put in something that could be bit off causing a choking hazzard or perhaps they might use a eating utensil that someone may force in the mouth damaging teeth. When I had my first seizure, my dad put his finger in my mouth. It prevented me from biting my tongue however that was the first and last time he ever tried that. He had a nice scar to remember that occasion.
Since he has nocturnal seizures, I am assuming he's having tonic clinic seizures. Does your brother have auras (focal aware seizures) or other types of seizures? Do you know his diagnosis? Do his meds help control his seizures or are his seizures intractable (uncontrolled.)
Take care,
Jake

Hi @kristinalynn
I am sorry you and your brother are going through such an experience.
In order to help us to help you, as @jakedduck1 has well put, we need to have a better understanding of what is happening to your brother, what types of seizures he had and has, the medications he is taking and what type of epilepsy he has. Is he being treated by a neurologist or an epileptologist?
You said he started to have random seizures after the loss of his caretaker, if I understood you correctly. Stress is well known as a major trigger of seizures. Does he need a caretaker? Does he have any other condition besides epilepsy?
I copy here a link to the major seizure triggers from the Epilepsy Foundation: https://www.epilepsy.com/what-is-epilepsy/seizure-triggers. The site of the Epilepsy Foundation is very complete and has been my school to learn more about my epilepsy, helping me a lot to find my way in the treatment of my epilepsy.
All the best!
Chris (@santosha)

All the Dr's have ever said was epilepsy. Give him medicine and send him on. Let me remind myself what meds he is on.

@santosha I will get medicine information. I know dilantin is one of them .

They happen at random. Awake or asleep. It doesn't seem to matter. He doesn't have insurance so sometimes the cost of buying them isn't even an option. After he seizes it takes alot of energy from him he doesn't have any memory of it happening but I'm scared he'll have THE LAST ONE soon.

@kristinalynn
Have you seen your brother have any seizures or are they all nocturnal? If you have can you explain what happens during the seizures? If it's a tiny clinic seizure Sometimes call grandmal the muscles stiffen.
You may hear a loud cry as air is forced past the vocal cords.
Loses consciousness and falls if standing.
He may bite his tongue and/or cheek.
Then rapid shaking of various body parts. The jerking usually stops in a few minutes.
they may turn blue if having trouble breathing if the seizure lasts longer than normal.
Loss of bladder or bowel may happen.
He may be confu as his brain recovers. Seizures use a lot of energy and so he may sleep after the confusion/post ictal phase. This can last from minutes to hours.
It's best if seizures could be videoed.
Has your brother had a brain CT, MRI or PET or other scans, EEG, blood tests, neurological exam? These tests may be normal but that dyrule out an epilepsy diagnosis. PKeep in mind 50% of EEG's are interpreted as normal in known people with Epilepsy because they are not having seizure activity at the time popof the test. I always have a lot of seizure activity but it doesn't usually manifest into a full blown seizure. The two main types of seizures are Generalized and focal seizures. Generalized seizures affect both sides of the brain whereas focal seizures happen in one area of the brain. You need to ask what type of seizures and the type of epilepsy you have because the type of treatment is dependent on it.
Take care,
Jake

Yes, Dilantin is a frequently prescribed drug and is the second oldest antiseizure drug. I took it for over 20 years. It was first available in 1926. Prior to that was the drug Phenobarbital which was available in 1912 and is also the most inexpensive medication. I have taken it for 57 years. A man in Africa wrote to me and said he was taking multiple medications and was concerned about the cost so I suggested asking his neurologist about phenobarbital which he did. After he started taking it, he hasn't had a seizure since. Of course, different medications work for different types of seizures and people.
Also the Pharmaceutical companies have programs that pay for seizure medicines. In 2018 the purified CBD oil medication became available but cost about $32,000 a year. Several people here on the forum received Assistance from the pharmaceutical company and had very minimal co-pays. Just an example of how financially helpful the pharmaceutical companies can be If he is having seizures, it is essential to take antiseizure medication's on a regular basis and around the same time.

Any comments on dilantin

@kristinalynn
Re Dilantin or if he gets the generic Phentoin always get refills from the same manufacturer and don't switch from brand to generic or Vice versa. Stick with one or the other.
Also my doctors believe the Dilantin caused my Peripheral neuropathy, although I believe it was a combination of Dilantin and phenobarbital. Both drugs are known to cause it. Dilantin may cause drowsiness, confusion, balance issues. Many of the side effects may disappear or become more mild after a while few weeks or months. It also depleats your Vit D so a supplement will likely be necessary. You'll need to get your Dilantin level checked and also kidney, liver function tests, sodium and glucose. It can increase glucose and other tests are necessary or at least advised.
Best wishes,
Jake

Hi @kristinalynn
As @jakedduck1 has mentioned well, it is important to know the kind of epilepsy and seizures your brother has, but the treatment varies according to that.
Here I copy a video on the importance of knowing the type of epilepsy and seizure one has: https://www.youtube.com/watch?v=q4Q9ZUft8_Q
I also copy here a video on the different types of seizures: https://www.youtube.com/watch?v=otuaPazecDo&list=PLjjNLpxtjihMuEy0geqIqkBGTKTkFxIr4&index=46&t=8s
As @jakedduck1 has also mentioned, a normal EEG does not guarantee that one does not have epilepsy. I have lived 36 years with epilepsy without knowing it. Doctors did EEGs and said they were normal. It was only in 2019 that a doctor gave me some recommendations when he asked me to repeat this exam, such as sleeping as little as possible the night before the exam. Bingo, that changed the result of the EEGs I did during my youth and adulthood, showing my epilepsy finally.
Chris (@santosha)