Hey everyone, I have a doctors appt. the 24th to review see how the headaches are doing and to talk about the results from the Spinal Tap. Headaches haven't changed much and no change on my seizures. On a another note, why is it so hard to find someone who isn't afraid to try and understand what it's like to have Epilepsy? It seems I always find the guys who don't wanna know about Epilepsy and just hurt me mentally. I'm only 26 and people or just guys my age don't want to even try and understand what this is like. When they find out most don't wanna learn. The depression, mood swings and everything else that comes with it....it's hard. Right now I feel like I'm never going to be able to find the right guy for me.

We always have to stay positive with lifes many problems. I hope you have good results with your doctor's appointment.

As for the finding the right guy, just keep your head up and a long will come a mate. I was just the same way, and then came alone a fine man. We have been married for 34 years. There is one on earth for you just be patient and your knight will come along.

Darlene

Tiger?

Have you ever considered keeping a journal/log? Some women experience
problems during certain times of the month, and after several months you
can share with your Regular Primary Care Doctor and your Neurologist (I
recommend BOTH Doctors). There may be a reason behind that, but I
will refrain from going any further into details, or provide any ideas, so
this way, the Doctors can look into it more specifically and deal with you
personally and get to the bottom line!

It's hard in general to find a partner, even without Epilepsy. Well, let me rephrase. Anyone can find a partner, hah. It's the journey to find a partner who suits you, who compliments you and you compliment them. Someone you feel safe with, and comfortable to talk to.

I've found myself always holding back, or not mentioning what I saw as 'flaws' and that can really backfire. On one hand, you can hide your Epilepsy and accompanied symptoms which if he found out, would make you appear to be dishonest and not trusting of him, or automatically insinuating he judges people. On the other hand, you can risk him 'running away' if you do tell him.

It's a risk you have to take, but if someone runs from something like Epilepsy - you really don't want someone like that in your life. Trust me on this.

I was fortunate enough to be with someone who forgave me. I'd gone so long without a seizure and didn't even know they were seizures at the time that I never mentioned it to him...kinda. I recall telling him my blood sugar dropped now and then, when telling him about various injuries (I get cortisone injections in my SI joint after having a drop seizure and fracturing my tailbone, ow!).

I didn't know anything about Epilepsy, so I figured I fell and hit myself so hard I peed. Hehe. The doctors always focused on the aftermath over what caused it (injury over passing out). Anyway, I only told him I passed out a few times and that I assumed it was because I was pregnant and never mentioned it again. I never mentioned losing control of any 'functions' convulsions, nothing. This backfired!

I went, heck, a good 4-5 years without an episode. We went to a movie, had an outstanding meal and went home. We were laying on the couch watching tv and I dozed off, I woke up to severe nausea. I knew that feeling (what I know now as my aura). I ran to the bathroom and once I heard buzzing (I know it was coming) I was able to muster up enough energy to scream for him (which apparently still haunts him).

I honestly wish I'd have taken more initiative in my health care, or known more of seizures to have had my doctors look into WHY I passed out over fixing what I broke afterwards.

The look of horror on my boyfriends face will never leave my mind, I literally scared the crap out of him. His mother is a doctor, so he called her and asked how someone looked who has an aneurysm. That poor thing, after my seizures I am ghostly white and trembling terribly. Not always do I lose control of my bladder, but this time I did. My ears rang so bad I couldn't hear and it felt like someone kicked the back of my head. So all I could say between crying while curled up in a ball was, "Honey, I peed on my new jammies". (Haha, you see my priorities here?)

He demanded to call 911, and I told him that it was like before, that my blood sugar dropped and I would be fine. He, having more medical knowledge that I had at the time (which I'm full of info now) reminded me that I'd eaten a perfectly fine meal and my blood sugar shouldn't drastically drop a couple of hours later when I'm sleeping and wake me up, nor should I lose control of my bladder or have convulsions. He called 911.

I also didn't want to go to a follow-up, I was ashamed. He made me go and I felt good nothing was wrong, and my EEG came back abnormal. So I went to have another, which also came back abnormal.

I'd have never known if it weren't for him, and I'd still be risking injuring myself randomly passing out (thank God I have auras for my drops). I only had one drop a year or so, and went 4 years without - so it was hard knowing. I didn't know symptoms of various seizure types to know I was having a lot of seizures in between. If it weren't for him, I'd be at a much higher risk than I am now. But had I stood up long ago and told those doctors to check why I passed out, I'd have known something to warn him.

I can only imagine how he must have felt seeing me that way, he'd never even seen me cry before so to see me curled up, shaking, crying and wet must have been something that will never leave his mind and something he wasn't prepared for.

The point of my story is this:

Focus on YOU and your health, trust me - that part is key. Let the men come to you and look at your Epilepsy as a gift. It weeds out the jerks. If a guy runs from it, he's shallow and not worth it. There's someone for everyone, believe it or not. Just let them come to you, once you find someone who is OK with the "E word" then tell them about it. Tell them there's more than one seizure out there, tell them how awful our medicine is.

It took my boyfriend a long time to accept what my medicine did to me, but he had to learn, and it wasn't easy. I never bounced back from that seizure, things got worse. I wish I'd have known so I could have told him, so it would have been an easier transition.

Before him, I dated someone so awful if they had a book of crappy boyfriends this guy would be on the cover. Don't think it's you - ever. You're not the shallow one, the guys who can't accept it are. In most cases a lot of us are perfectly fine and the main thing that alters us mentally is our medication, it's unfair to be judged by something you cannot control. If someone wants to judge that, to heck with them!

Good things DO come to those who wait. Girl, I have enough baggage to fill a bedroom on top of my medical issues and I found someone great. If I can do it, anyone can.

Keep your head up!

BRAVO! Well put! Only problem with my end was - my husband had a problem with it! And here's the weirdness of it all ... believe it or not, after 23 years of marriage, finally ending in a horrible nasty divorce, he finally admits several months ago ...

READY TO HEAR IT?

He has EPILEPSY TOO!

He just refuses to be treated for it!

That one just BLEW our (my son's and mine) minds!

Thank you so much ellie, becaues of people like you, who actually can relate to me...it's such a blessing.

I do actually keep a journal but sometime soon I'll be going to talk to someone about the depression, etc. Being here has been a blessing because I can relate to so many people. Thank you guys so much.

Oh my gosh! For once, I have no clue what to say!

Tiger Lilly, you're welcome. That's why we're all here.

Hi Tiger Lilly,
I understand exactly how you feel. Yrs. ago I was engaged to be married and my former fiancee knew that I had epilepsy but he backed out and decided not to marry me a few months before the wedding. It hurt a lot but then I meant my now husband of 20 yrs. and he has always been very understanding about my epilepsy. He was never afraid of when I would have a sz. and he has given me a lot of moral support. He drives me to work, picks me up, takes me to the stores etc. I will admit he complains about it once in awhile but I just tell him I'm not going to let my epilepsy stop me from working and being like your everyday person.
It was my parents and brother who really rejected me and have turned from me since I've had seizures. My parents sent me away to a boarding school out of state for 3 yrs. because they didn't want the responsibility of taking care of me when my seizures were really bad. Since then I've learned to take care of myself and be independent. I look at singer Elton John he's had epilepsy for yrs. and he never let that stop him.
Look at it this way if a person can't or won't accept you because of your epilepsy then they aren't much of a true friend at all. I look at my Aunt who has MS and is in a wheelchair but she still gets out and she doesn't let her medical condition stop her in anyway so don't give up stay strong and you will go far in life. Here's wishing you well and May God Bless You!

Sue

Thank you porkette, It's so nice to hear the stories that I've heard. It's just hard to find that someone who will understand the good and the bad about epilepsy. I'm actually very open about having epilepsy because I want people to know that I'm not afraid of it. It's just hard sometimes because there's those times when you get down and you feel like your nothing and nobody is going to want you. I know I'm still considered young at 26 but, when I still live with my parents it's hard to find someone who'll understand. Patience is something that is hard for me because of my mood swings too. I'm just taking my life day by day the best way that I can. Thank you so much for your info, I can't tell you enough how much it helps me. Take Care