I have to laugh, I still get a kick out of your screen name ... I was telling my husband, and he says .. Well she has a sense of humor .....
Have you heard anything else about Surgery ???
I also wanted to comment, about, I notice you wrote you were diagnosed with seizure disorder when you were 22.... Wow ... So was I.... You know.... I know others that were about that age... I have a friend that was pregnant also, when she found out....
I was 6 months pregnant.... I think I may have had a seizure once when I was about 19, because one time I woke up next to my bed all banged up.... and never really thought anything of it.... My friends at work, thought I got beat up.... One of them said maybe you had a Seizure.... I thought they were NUTS ... But just to tell you , Seems like this is a common age for symtoms to come out....
And yes the doc told me the same thing, that I was most likely born with this, he even mentioned it may have been something to do with the pressure of birth... I was a big baby 9lbs 80z... Did you ever hear of such a thing... ???
Well, you know, the first time I had a seizure I was walking and I had this weird feeling. It was raining and I had my umbrella up. I was all alone and I thought, " Hey, I think I've done this before a bunch of times." The deja vu thing. Well, when it started to happen over and over again it was getting too weird. I honestly thought I was getting psycho. I didn't want to tell anyone. I wasn't pregnant. Maybe your hormones were the reason and the body's stress from pregnany?
My episodes gradually built up to 3 times a day over the next 3 years and finally I had an out of body experience. And then I thought, "OK, they're going to put me in the funny farm if I tell anyone." I was having incontinent episodes at night and the bedsheets were all pulled up in the morning. It was later a friend said to me, " Glenda, what's the matter with you! You stopped talking to me like you were a statue!" So, I went to the doctor and had a seizure on an EEG.
I'm the second of twins . My dad says the doctor didn't know there were twins in my mom when were born. I'm left handed and there was a possibility I was a little oxygen deprived at birth. Guess I should feel lucky they didn't leave me in there, huh? lol Anyway, my sister is fine. She is right-handed and is healthy.
I'm not scheduled for surgery yet. But because I've failed medical therapy so far, where does that leave me? Probably in the same place as you... My doc is great, he doesn't want to say, " YOU NEED SURGERY". I think he wants me to come to that conclusion myself and say, "Ok, I'm ready now." And I think I'm ready now...
I just Know somewhere over the rainbow, sky's ARE blue...
Wow !! You see it is common age... I know I met alot on another site in the past year also, that had their symptoms rise at this age...
That was also my only Gran mal seizure that I am aware of... Unless that is what happen when I was 19.. Which I would bet it was... Otherwise I have the same as Glenda, the Deja vu, or Statue like feeling... Weird huh.. Yeah, I thought I was to be put in the looney bin also...
I also was told... Yes the extra blood volume in my body from being pregnant, brought on the Gran Mal, since I have the angioma the vessel had a leak and this caused the GM... The Auras are caused I am told just from the aggravated area around the vessel... and the ring as we spoke about earlier... I guess just the fact that their is something there that shouldnt be there......
I wonder where hormones come in though ?? I know it does make a difference.. but to this day... even though I went to a specialist and everything... I still dont understand how a hormone could affect a damaged vessel that is causing my seizures ?????
Randy ,
That is the area in which my seizures come from... right near my left ear...Have you had recent MRIs ??
Does your eegs show activity in other areas ?? Were you ever checked out for damaged vessels ?? I know years ago, I was told I had an AVM at first, then when I really followed up... they found the root of the problem....
I am sure you have... considering all the years you have had to deal with this....
Angiomas... or what is the other word for them cavernous hemangioma ?? are more common than people think....
Amazing.... Well... I guess the next time one of us are in the Supermarket, and we look up... thinking... UHHO OHHH.... Where am I .... I bet there is someone else there that is lost too
You are so funny! When we were kids were always fighting, I THought she was a wicked sister! But now, she is the GREATESt sister a person could have.
And as for the hormone thing- there are so many darn things that make seizures worse , it seems every time we turn around someone is telling us how this is bad and that is bad, etc, etc, etc. But, the fact is, we have faulty wiring in our brains and LOTS of things affect the delicate balance of that. I am told that hormones in women are especially to blame because there is a chain reaction that affects a whole bunch of other things. So, the delicate balance is thrown out of wack all the time. That happened to me too with my cycle. I could tell when I was going to get my period. The day before it came-sure enough, I would have a seizure or two. I was getting a real "charge" out of my monthly period!
Did you ever get an angiogram? I did right after I had my first MRI. It was to make sure there wasn't an AVM. The neurosurgeon said he was sure it as a cavernous angioma, "low pressure" and not needing immediate surgery, but he wanted to make sure so he did an angiogram. I thought it was a rather painful test. I could feel everything they did.- If I ever have another one, I'm going to ask to be put asleep for the procedure.
Randy- You know, I had a seizure on my first EEG - Tonic type- clinched and tightened up my whole body, opened my eyes wide... and every one after that has been totally normal! The body does weird things!!
Yes I did have an angiogram... that is how we diagnosed the angioma... I was admitted into the hospital, 15 years ago, after I gave birth to my daughter ... right after.. to have the AVM taken care of... that the doctors thought I had... Then..before the Surgery... The neurosurgeon, did the angio.. and said ... you dont have an AVM... this is what you have.... He did suggest I have it removed .. then ... But 15 years ago... he really couldnt give me any guarantees of the damage that would be done afterwards, and he said an angioma is so much less severe than an AVM maybe we should ride it out a bit... So I packed my bags .... And RAN !!!!!! The rest is history......But YES !!! I do remember the pain of it !!!! It hurt !!!!!!
Now the WADA test that I am having in April requires an angio.... and I am not happy !!!! I just remember the PAIN !!!!
So what do you mean you failed medical therapy ?? Not sure what you mean by that ....
I have to say also ... Yes.. a day before my cycle is the DAY... I love being a Woman !!!!! That was a good one...You get a " charge " out of it... I will have to TRY... to remember that one !!!
So you are going to have the WADA in April? Aren't we going to have some fun! Yep, the only thing I can say is that at least it's more like the end of the road instead of the beginning of the road by that time. You've come this far, what's a few more tests?? Think of all the pills you've taken in your lifetime...it's got to weigh a ton...and if surgery can get rid of, or reduce the seizures, then it will all be worth it.
When I was in to have my angio, the radiologist who did the test said to me, "OK, now, you're going to feel a warm feeling in your head when we do this injection." And, I'm thinking, OK, I can handle that. The next thing I know I feel a hot pocker in my head! So, after the sixth injection I was ready to call it a day. When you have your WADA done, you've got to tell me how you make out! I'll be thinking of you on that day!
When I said I Failed medical therapy, I mean- after 7 drugs I still have uncontrolled seizures. So, my doc says I have basically failed medical (drug) therapy. So, Basically That leaves surgery(!).
So, Dorothy, when you get done with the Ruby slippers, I think you should pass them around to the rest of us! Glenda
Re the hormones, Estrogen lowers the seizure threshold making one more vulnerable to having a seizure. Progesterone raises it giving some protection in that you can tolerate more activity before it becomes a seizure. I would always have a seizure a couple of days before my period due to those two hormones being at the levels they are at that time, Estrogen up and Progesterone down. Phoebe
yes, you are absolutely right about the estrogen and progesterone levels! Another time that the estrogen levels are high and progesterone levels are lower is at ovulation time (midcycle). I would occasionally have a seizure in the middle of my cycle exactly at the midway point, but most predictably it was the day before I got my period.
Yes.. I have known about the level explaination and all, but I just still find it so odd.. how it affects us... I guess our brains are so strange...Also.. Yes I have had problems midcycle also... according to my calendars.. I know all the text explanations... but I just have a hard time absorbing it !!! Especially because my seizures in particular are caused by the angioma... I guess I always wondered how hormones could affect my angioma... ....I guess thats why I always got yelled at as a kid... " YOU are so thick !!! Dont you understand anything !!! """
As far as the Wada... If it is the final test... or they say I am a GO... then Great !!! If not... What did I have to lose...
I will be more than happy to pass over those slippers.... ...
... I was telling my husband, and he says .. Well she has a sense of humor 
.....
.... He ehheheheh....
, it seems every time we turn around someone is telling us how this is bad and that is bad, etc, etc, etc. But, the fact is, we have faulty wiring in our brains and LOTS of things affect the delicate balance of that. I am told that hormones in women are especially to blame because there is a chain reaction that affects a whole bunch of other things. So, the delicate balance is thrown out of wack all the time. That happened to me too with my cycle. I could tell when I was going to get my period. The day before it came-sure enough, I would have a seizure or two. I was getting a real "charge" out of my monthly period!