hello, my intro and a little history, along with a question

[s10sleeper]

Hello everyone, I have been reading the posts for awhile but have just recently decided to start posting. I am 28 years old and around the age of 13 was diagnosed with complex partial seizures that are believed to have been caused due to having meningitis at 11 months old.

Life throughout high school was tough as they were not able to get my seizures under control with medication, at one point at age 15 they thought they had gotten them under control with tegretol and Depakote and I went six months seizure free and was able to get my license for about a month when I had a breakthrough seizure causing me to get into a car accident. The rest of high school and up until age 20 they could not get it under control until they removed tegretol and put me on Gabitril.

I went for about 3 more years without a seizure and then had another breakthrough that put me through another car wreck. Afterwards they upped my dosage which worked until about a year and a half ago when I started having seizures in the middle of the night. Now the doctors have sent me to an Epileptologist where they have maxed me out on meds, using trileptol, Keppra and Depakote (Thank god for good health insurance).

After this my seizures became much less severe, to where I can go right back to what I was doing after about 5 minutes, but more frequent, at least daily. The epilepsy center has ran me through all of the tests, the MRI again, the VEEG, CT scan, eegs, and a WADA test to see if they could do surgery, only to find out the cause is right on the portion affecting my speech and cannot do the surgery. Now they are talking about doing the RNS, or Neuropace as they also believe a VNS will not help.

My seizures coming back seem to have come at the same time I took my father in to take care of him as he is diabetic and is unable to work. Unfortunately I thought it was going to only be temporary until he got the eye surgery done and I also thought my 3 siblings would help out, which they rarely do and they also live in other towns. My father is extremely short tempered and verbal, along with a slob. Not to sound like I am complaining it just makes me wonder if the added stress of trying to make it around town with few friends to give me a ride, limited funds, going to college, working full time and trying to take care of him are adding to the problems. I try not to look at is I am the only one and reading the posts on here so far as helped to show that, but it does feel like it sometimes when the only time I am able to get out is when I go to work.

Anyways sorry about the long winded intro, I look forward to seeing more in the forums.

 

[mamaruns]

Hello and welcome.

Yes, I would say that the added stress of taking care of your father is worsening your seizures. Does he get disability? If your siblings won't help you out, maybe you can move him into section 8 housing for the low income. I think some people on disability can have a nurse care for them a few times a week, which would help you out.

Personally, I don't think your dad's diabetes is an excuse for him to be short-tempered or verbal with you. It's your house, and you're the one taking care of him. I think you can give him the option to leave if he can't respect you.

 

[brain]

:hello: s10sleeper!

Welcome to CWE! Thanks for sharing
with us your story and very interesting
and detailed at that! Epilepsy is like a
roller coaster with ups and downs; but
unfortunately, sometimes we have people
who are "in the way" which without any
realization that they are actually causing
problems for people with epilepsy with
the additional stress. Sometimes they
don't even realize they are adding stress
on others!

But I agree with the other post, there's
no excuse for the behavior of the other,
not acceptable at all. However, I do
wonder have you ever sat down and
had a friendly chat with him? He may
not realize it, but from your posting,
he's having health problems too.

As for others - it's been a problematic
issue all over; trying to find transport-
ation, assistance, help, et cetera. It
can be difficult and hard ~ and yet we
want to be independent too. You are
not alone with this struggle, I face it
myself too, and so do thousands of
others!

They get frustrated, feel betrayed,
rejected, isolated, and so much more.
It's no wonder why Epilepsy is hated
so much!



In fact here in CWE - we have a special
Forum where you can "unleash" it all
by venting ... in the Padded Room.
We feel your pain, knowing that we've
been through it all and going through it.
It's a refuge that we've recently added
in CWE ~ because there was a need for
one ...

So don't feel like you're all alone, for
you are not!

((((( sending hugs )))))))

 

[BuckeyeFan]

Welcome s10

:cheers:

Though I love to laugh at the humor here and relax with Speber's music, I have also used this as a release for a couple of rants. It is healthy to get those feelings out of your system. The extra benefit, even though it was not what I expected, is the outreach of support from the other members. There are some really nice people here who rise above their own problems to support each other.

Welcome from Ohio.

 

[Meetz1064]

Welcome, s10!

I do have to say that I, too, agree with the others. It is time to ask your dad to leave. Find some sort of housing arrangement for him, be it Section 8 or whatever, and get him out, for YOUR OWN GOOD!!! You can't be living like this for the long term! :twocents::twocents:

You didn't say if your father is on disability or not. If he's a veteran, you might be able to get help from the local VA. Tell your siblings that you're doing this, no matter what they think, and then DO IT. If they want to take a turn at taking care of him then, OK. But get yourself out of harm's way, and relieve yourself of the extra stress, and that way, you SHOULD reduce the number of seizures, we would all hope..........:soap:

Please keep us updated....we will be thinking of you!

Meetz

 

[Bernard]

Hi s10sleeper, welcome to the forum. :hello:

 

[RobinN]

Welcome sleeper - as you see you are already supported here.
I was reading your intro and was asking myself... what more can he take.
You also might look at how you can help your self through nutritional changes.
Make yourself at home

 

[skillefer]

Hi s10! I totally agree with Meetz. Your sibings need to put up or shut up, to put it quite bluntly. The stress of taking care of your dad is probably not helping your seizures. Also, since your dad is diabetic, make sure you keep track of your blood sugar. Make sure that it doesn't go too low or too high. That can trigger seizures too.