Scared for my Brother

[helperguy231]

Hello, Im new


My brother first had a Seizure out of the blue in 2015 when he was 26.He has no history of them growing up. only incidents for instance in 2011 when he was 21 he was sleeping me and my mom where in the hall. some how he opened the door in a daze, and walk and fell kept getting up and falling until he snapped out of it and didn't know what happened. we guess he was just sleep walking and thought nothing of it. after that incident it didn't happen again.


Then in 2015 he had a very bad seizure bit his tongue all up. we took him to the ER they ran every test, and put him on dilantin, we protested them putting him on the seizure drug, being it was his only seizure ever, the DR said she will put him on it as a precaution.but after that he started having 3 every month until the DR put him on keppra then, they kept upping the dosage until now. where he hasn't had one for 3 months, but thats the furthest he makes it. until he has a very bad one.

I dont think my brother has epilepsy and shouldnt be on the med, he think so also, he thinks its because of stress, he went through a very traumatic issue around those times. and thinks its PNES. And asking his Doctor to taper him off Kepraa because my brother thinks its affecting him alot since he shouldnt be on it.

Now to the part what scares me, My brother starts randomly laughing once or twice then says some gibberish, and then asks me what am i talking about. ill say huh? you just said something then he doesnt remember the little episode, are these mini seizures? he says it only happens when he thinks about the traumatic issue he went through, i also think the Kepraa is affecting his brain. his Doctor is trying to consider brain surgery also this is crazy its not like hes having them everyday. only once every 2-3 months his doctor wont taper him off kepraa saying they arent under control since he still having seizures.

 

[masterjen]

Hi, helperguy and welcome to CWE;

I can understand why you are concerned for your brother; he sure has a lot going on. The episodes you describe can fall into the seizure category; from what you describe they overall sound like complex partial seizures (just my non-medical opinion). Stress is a known trigger for seizures, so they may very well not be PNES at all.

When you refer to "the doctor" I'm assuming you're meaning a neurologist, but is this a general neurologist or an epileptologist? Either way my advice would be to encourage your brother to see an epileptologist, a neurologist who specializes in epilepsy. There are many seizure medications out there, and if your brother does not like the side effects of Keppra there are others he can try, once the epileptologist confirms that your brother is in fact experiencing seizures. While it is largely a trial and error process to find the right medication, some medications work better for certain seizure types than others, and an epileptologist is the best specialist to help with this.

It is important that your brother keep a seizure journal in which he keeps track of his seizures, including what he was doing before and after the seizure, how long it lasted, how he felt before/after/during the seizure, whether there were any potential triggers (eg. high caffeine or alcohol intake, nonprescription and prescription drugs, significant stress, lack of sleep, etc.), and so on. If someone else observed the seizure, they should write what they noticed during as well as before and after the seizure and seizure duration.

Until a diagnosis is confirmed, your brother should take seizure precautions if he is not already. This particularly includes no driving, but also no swimming without a "buddy", avoiding high places where he could potentially fall (eg. climbing a ladder) and any other activities where he may be a danger to himself or others should he suddenly go into a seizure.

Continue to be a support to him as much as you can and have already. He might be trying to act tough, but going through something like this is very unnerving and frightening. Encourage him to let you go with him to his specialist appointments so that you obtain first hand information as well, since issues discussed can be complex and it is difficult for just one person to remember everything.

 

[seagull]

I assuming he had all the tests MRI eeg if they positive and cut sz down what is it you want from doctor.May be you should go in with him to doc next time he go after all you one who seen them.If people taken to ER I think you must expect treatment with Meds .Your brother had rough time so perhaps the stress issues should be treated along side e treatment.is He suffering side effect of keppra personly I try see epilepsy expert but every possibility he not change Meds he may give something along side and the stress issues could be that stress syndrome I completly forgot what called but starts with Post ..he quite obviously got something wrong and if not had MRI and eeg X-rays then bit premature the doctor diagnosing epilepsy many things can cause sz other than epilepsy although epilepsy the most common.Keep in touch be very intresting know Out come I learn something that way knowledge is good
Ditto driving swimming etc

 

[Nakamova]

Hi helperguy,

I can understand your concerns and those of your brother. I think it may be time for a second or third opinion with a different epilepsy specialist. The epilepsy diagnosis may be correct (the "giggling" episodes sound like complex partial seizures to me), but the current neurologist definitely isn't communicating well and isn't listening to your brother's concerns about both the diagnosis and about the Keppra. There are many different kinds of anti-seizure meds out there -- if the Keppra isn't helping control the seizures and is causing problematic side effects, then the neuro should be responsive and open to discussing other medication options.

For What It's Worth: I had my first seizure out of the blue too (at age 35). I also argued (prayed, really) that it was due to to stress, that it was psychogenic, etc. But, while stress may have been a secondary factor, the seizures were epileptic in origin. I resisted medication -- tapering off twice with doctor's supervision -- but each time the seizures returned. If seizures are left untreated, more and more seizures can follow, since the brain can get "in the habit" of seizing. So I wised up, stayed on meds (after switching a few times to find one that worked well for me), and I've been seizure-free for many years now. If your brother has epilepsy (which is just the technical term for someone who has had two unprovoked seizures), then he should persist in finding a treatment to control them sooner rather than later. If the seizures are psychogenic in origin, your brother should be proactive in seeing a therapist and finding ways to reduce his stress.

 

[seagull]

Stress did it for me

 

[helperguy231]

Hello guys,


Sorry for the late reply, I suggested to my brother that he look for another doctor. He hasnt had a grand meal in a while but. I think they have turned into partials now. Because he makes clicking noises the talks gibberish and doesn't know what I'm saying for 10 seconds. I tell him these are sezuores because he's doing remember. But he argued with me and says it's his anxiety because before it happens he gets. Very scared and says he remembers something, I told him it may be his arura. He's taking 2,500 kepraa. 1,250 in the am and 1,250 in the pm. He doesn't want to get on any other medication because of the side effects and kepraa is the only one that doesn't have many. He really wants to get off the kepraa he says he thinks it's destroying his brain.

 

[seagull]

He needs see doc asap.would you be eating big meal when posted..just experiment i doing

 

[Nakamova]

He doesn't want to get on any other medication because of the side effects and kepraa is the only one that doesn't have many. He really wants to get off the kepraa he says he thinks it's destroying his brain.

He's not making any sense. If he thinks Keppra is destroying his brain, then that's a MAJOR side effect and he needs to try something else. Keppra isn't controlling his partials and it's making him crazy -- why in the world would he want to stay on it? There are lots of meds out there, and it often takes a while to find the right match. You're a great brother for helping him -- do what you can to get him to see another doctor and consider changing his meds.