[PurpleFlyingMonkeys]

This isn't disability related but apparently is going to be chronic. I posted in the health forum but decided to post here.

As I've stated time and time again I had two grand mal seizures in the last year and a half. I finally got in to see a neurologist two weeks ago when I finally got insurance. The neuro said he thinks I have epilepsy.

So he ordered an EEG. Two days before I got the EEG I found out my insurance was being cancelled because my boss failed to turn my paperwork in on time. I was so angry I walked out of my job. I think I'm fired.

So I get the EEG on Thursday. I started having these "visual distortions" during the EEG. And afterward for the entire day I kept getting blind spots really bad. But I was hoping that it was coincidence and that everything was fine on the EEG. No such luck.

Monday the neuro office called and said my EEG came back abnormal. I didn't have insurance so I didn't have a way to go into the office seeing as it's $350 for an appointment. So I went to the medicaid office and applied for medicaid. It's going to take 45 days to hear back from them!

So I called this morning to see if the neuro office would let me make payments. The receptionist said she would check with the manager and give me a call back. Couple hours later and she calls back and said "We can get you in tomorrow at 10am and we will see you for only a$150 office charge. We need to get you in here so we can get you on medication as soon as possible"

So it looks like something is wrong, something that needs medication. Probably epilepsy. I'm freaked out. I knew it was a possibility but now it's seeming real. I may ALWAYS have to worry about this. I may ALWAYS be on medication. I may never get my license back. I may never be able to do so many things I used to love to do. I may always worry about getting another concussion during an episode.

When I thought it was dissociation causing my blackouts I thought it could be fixed with time... Now it seems it may never be fixed and I may be on medication that has a book of side effects for the rest of my life.

I'm trying to cope well with this, I'm trying not to freak out or panic, I'm trying to convince myself my life wont change too much and it isn't giving me epilepsy, that it's just putting a name on my symptoms but it's scary. And it's sad. And it seems like this whole mess has turned my life upside down. I'm 26 years old. I shouldn't all of a sudden have this!

I know many other illnesses on here are so much worse than what I'm experiencing and I'm sorry for throwing myself a pitty party, I'm just not as confident as I am showing to everyone. No one around me knows just how scared I am right now. So I'm here because I know PC has so many wonderful supportive people who understand.

[NWgirl2013]

Yikes! that is scary. And you're right to feel that. Poor baby! I'm sorry.
No one wants to get that diagnosis, but you did, and the doc seems to know how to help you so his attention sounds like good news to me.

Can you do a little research online about it? It may calm you to be as informed as possible. It will help when you have your appointment to have a list of questions to ask the doctor & gives you some control of the appointment. Answers from the one who is treating you will make more sense if you know more about what he's talking about.
My neuro doc wants me to ask as many questions as I can. So I make the effort and I do feel better about the appointments.

Check out epilepsyfoundation.org. This is a good place to start.

Sorry about the financial aspects for you though. Maybe your doc will have some more ideas about that too.
Extra Extra prayers heading your way tonight. The best of luck to you.

[shezbut]

((((PFM))))

You're always in my thoughts, honey. I'm very sorry to hear that your boss forgot to put your paperwork through ~ ugh!!! I'd have gone ballistic on that one too, with sky high emotions, it's tough not to.

The sooner you go in for treatment, the better. I've said it countless times by now! I was 26 years old when I was finally diagnosed with E myself, but I'd been having undiagnosed and untreated seizures for many years leading to permanent damage in both sides of my brain. The hippocampus on both sides was puny, in the 5th - 10th percentile in size due to shrinkage from my untreated complex partial seizures.

Very best wishes to you ~ you're doing what the best thing is for you to do for yourself & that is pretty darn important!

[Travelinglady]

And remember that with proper treatment and so no seizures for a certain amount of time (I think a year), you can drive again and lead a basically normal life.

[Leed]

Good grief! Like this is all you need! I'm so sorry -- I really am. And I KNOW you're scared. I would be too.

Jeez, only 26 and having to deal with all of this. Life sure can hand us a bowl of cow pies sometimes.

But like Payne said, if you're seizure free for a year, you CAN drive again, so that's good. And I'm sure with proper treatment they can make that happen! It might take awhile to get the right combo of meds, but they'll figure it out, I'm sure of it. I DO wish the fleas of a thousand camels infests your bosses private parts! That was a ROTTEN thing to do, and you shouldn't have been fired for walking out! Anyone would have been mad after that! He should have understood! Good grief.

Anyway - PLEASE let us know what happens, okay? I'll be waiting for the news. God bless & take care. Hugs, Lee

[PurpleFlyingMonkeys]

Thank you all so much for such wonderful words and advice.

I talked to a neuro today and she said I do have epilepsy and need to start treatment right away. The symptoms I experience pretty much every day numerous times a day she said could be partial or something like that she said I don't know.

So she gave me... I can't remember the name but I will be picking it up today and will post it. I have to take it two times a day and a B12 vitamin I think she said (I have it written down) I'm up from 0 pills since the summer to needing 3 a day eck.

I took it a lot better than I thought. I got teary eyed for a minute but I tried to be strong and was. Until she told me about having a child. My fiance and I are getting married this month and want to try for a baby in a couple years. Apparently having a seizure puts the pregnancy at risk for a miscarriage and being on the medication gives a higher risk of deformities. So I and my fiance are pretty upset about that. But I'm trying not to think about that until the time gets here.

I don't know how I will feel about this later but typically with me, if something is too overwhelming I kind of unconsciously push it away and deal with it piece by piece, I'm assuming that's what's happening now because I'm handling the diagnosis much better than the idea of a diagnosis.

[PurpleFlyingMonkeys]

Oh and.. Since my last full out seizure was in May, she said in about 3 months I should be stabalized and be able to drive again, so that's good But without insurance my medication she wrote up is $160 (but at least it's a two month supply)

[Travelinglady]

Sounds like good news overall!

[PurpleFlyingMonkeys]

It's called Keppra what I've been given for the seizures.

I've been awake 30 minutes and I'm not handling the news as well today. I'm scared to take my medication. It's sitting there ready to take and I'm just afraid to take it. Afraid to be on it for life, afraid if it doesnt work or makes things worse, afraid about the time we decide to get pregnant, afraid of driving again... I'm scared

[shezbut]

(((PFM)))

I can understand how overwhelmed you are feeling. It is very hard to face illnesses like E. Unfortunately, E, still isn't understood very well in general society. There are a lot of drawbacks to seizure disorders. Particularly as a woman.

Hormonal changes commonly cause seizures ~ and women go through a lot of hormonal fluctuations. The trick is finding the right medication for you. The med that can control your seizures, without producing major side effects for more than a few months. It can take some time and patience wait for the right med & dosage to come along!

Some people are really lucky and gain control over their seizures practically immediately, with seemingly no side effects from the medications. That is really rare though. That's just a fact. I really hate to sound negative (I'm not trying to scare you, honest!). I just want you to be realistic. Things will get better for you before you know it, really! But, there will be down times too. Times when you get sick, overtired, fully stressed, overstimulated, and those are times when we're more susceptible to seizures. Just keep that in mind.

There's a point where you need to let go of the worry of more seizures. You're taking medication as prescribed, and following doctor's orders.. you also need to take care of yourself through exercise, relaxation, having fun, that's important too! I'd also recommend continuing to write in a journal possible seizure activity, med side effects, etc. as well as positive emotions that occur during this time.

Very best wishes & hugs to you!!

[NWgirl2013]

Hi Again~ glad for the update. Your doc gave you that particular drug for a reason to start. Ya gotta try it, it may be the right one, like Shez sez. You'll get through this, I really think so!
Also, the drug manufacturer may have coupons and discounts online that you can get to reduce your out of pocket expense. Check it out...

[Crew]

(((((PFM)))))))))) for your support, I'm thinking of you, just wanted you to know. Peace and in healing.....crew