Wrong period in time to get this...

[PulpFiction]

Hi everyone. Just wondering if anyone else feels like the doctors have no friggin clue what the hell causes these seizures. I feel like I got this disease or god knows whatever it is during the wrong period In history. They just don't know enough about the brain yet. I'm on these waiting lists for specialists. Can't work, can't drive, can't be left alone. The gran mal seizures come on without warning, they put me on keppra and trileptal (sorry if I'm misspelling those). I've been a zombie, forgetting basic things, hairs falling out like crazy, neither medication has stopped or slowed the seizures. The only medication that somewhat curbs the seizures is Xanax, and that is not something I want to be hooked on for life. Now, like most of you I'm sure, google everything under the sun to try to figure this out and read these articles about PNES and the misdiagnosis of 54% of "epileptic" patients. I know I shouldn't believe everything I read but I just feel so helpless. I have a 5 month old and a 3 year old. I had a great career. I'm not ready to throw in the towel. My poor primary dr has been bombarded with my calls since he's the only one who I can actually get to see my promptly. My neurologist flat out said he couldn't and refered me to a specialist. The wait list is 2 months. I know it could be worse but I'm just so frustrated. I bet in 20 to 30 yeas they'll finally know what their talking about, have a cure, but now we're all guinea pigs.

 

[sassi]

It's hard looking at it from this side of the dice, you're right. I feel you in some of the same ways. I'm going to college, trying my damndest to get a good career and getting to the point where I'm feeling like I'm just a guinea pig in their little test tube of medications to see what works and what doesn't. I've only been on one medication and she refused to change the dosage.

There are a lot of misdiagnoses out there but I don't know what Xanax does, and I haven't read too much in depth about it. I would caution you until you see the specialist because it's one of those things that self-medication is worse than no medication at all. It's good that you're still fighting and not ready to throw in the towel.

I'm also not sure what causes them and not sure what causes my own. I just remember what caused my first one, not the ones that followed them or the ones that still come after them. All I can offer you is a listening ear and letting you know that I'm going through this too. I've got an appointment with my neurologist the 2nd of October and we're going to speak with her about getting an appointment with a specialist because it seems like since it wasn't headache related or something to that effect that it's not as interesting or something anymore. Something seemed to switch off as far as her interests and it seems like I'm not a priority when my life, my interests, and my future are a priority to me and I'm going to fight for it.

The brain is just such a confusing and wondrous organ that scientists still struggle to understand what's going on with it. And while I applaud their efforts I get frustrated with their lack of knowledge and understanding when I'm at the other end of it. When I didn't have this going on it was one of those things that was "I really hope they find out what's going on and fix it" and now that it's going on with me it's a demand rather than a hope.

Although I'm sure you've raised your concerns about your hair falling out but perhaps you can get that taken care of? I don't know if that would help in the interim. I wish you all the luck in the world. Keep us posted and welcome to CWE!

 

[PulpFiction]

Thanks Sassi. It's just feels good to have someone else in this world who understands. I don't know anyone who's ever had anything like this. I got my first granmal the night we buried my mother, I was 24. What are the odds and what does it mean, I wish I knew.

 

[epileric]

They do know that seizures are caused by a misfiring neuron but there are numerous things that can cause a neuron to misfire & it is very hard for them to figure out what it is.

I was born with my seizures & I was 39 years old before they finally figured out that it was a lesion on the hypothalamus of my brain. I'm now 53 & they are just now confirming that is the cause.

Despite the lack of knowledge regarding human neurology and the huge amount of knowledge needed to help us epileptics I am so grateful to have them now instead of earlier.

As recently as the 60's people with seizures were put in mental asylums. I used to be happy that I wasn't born a couple of hundred years ago when it was assumed that you were possessed if you had epileptic seizures but just now while googling the details, I found out that people still believe such silly things in this day & age *eyeroll*.

As for the medications..... it can be hard to find one that balances controlling your seizures with as few side-effects as possible. I was recently in the hospital for tests & they asked me if the side-effects of my meds effected my life and I had to tell them that I really didn't know since I've been on meds & had side-effects since I was 3 or 4 years old.

 

[PulpFiction]

Amen to that, thank god we weren't all born a hundred years ago and put in straight jackets.

 

[valeriedl]

I has my first seizure and was diagnosed with epilepsy 10 years ago at the age of 26. They still don't know what caused it. They think it could have been because of some type of virus but that's still a guess.

I really like my neurologist and have from the start. When I had my frist seizrue I was taken to UPMC, a very large hospital in my area. I was put into a coma for 4 months because they couldn't get the seizures to stop. I was in the hospital about 2 weeks after that before they thought I was able to come home. The hospital deals a good bit with students getting their teaching degree and I think because of that they look into new and different ways to deal with their paitents not just the same -old/same-old like other hospitals do.

Is there any other neurologist in your area? I have one localy but I know people who have gone to him and really don't like him. The one that I see is about an hour away but the drive (that someone else always has to do) is much worth it.

I know there are times that I've felt like a guinea pig. But I understand that just because something might work for someone, maybe even stop their seizures, doesn't mean it's going to work for you.

It has taken years to figure out what meds work for me. I've been on and off so many taking several different doasages of them that I've lost count. They seem to know pretty quickly that the med that I was taking wasn't doing any good or causing more problems than it was helping so they would take me off of it or change it. If there were side effects from the meds and I couldn't deal with them or they thought the side effects were something that I shouldn't have to deal with then they would change the med because of that. It was about 3 years ago that I got a VNS implant (I am still taking meds too) that my seizures have reduced a lot and aren't nearly as bad as they were.

I had to stop driving, quit my job and move back home with my parents because of my epliepsy. I had only moved out a little over a year before and was living my own life but then it was like I turned back into a child again.

At the begining my family didn't want to let me out of their sight any where we went. I think if I could have fit into the baby seat in a grocery store buggy they would have put me into it. No one wanted me to take a shower, use a knife, cook and so many other things unless there was someone in the room with me. If they heard something in the middle of the night they'd coming running into my room because they'd thought that I'd had a seizure.

I don't have any children and don't want to because I don't know what would happen to the child because of the meds that I'm on or to me if I had to stop taking any meds.

People on here understand what you're going through, they may even be going through it themselves, and you'll get a good bit of help and advice. Welcome to CWE!

 

[Cint]

Hi everyone. Just wondering if anyone else feels like the doctors have no friggin clue what the hell causes these seizures.

Hi PulpFiction and Welcome to our world,

Yes, I do know how it feels to be one of those that the docs have NO clue as to what brought on my seizures in the first place. Mine started over 30 years ago when I was only 23 years old, first as CP and then progressed into TC seizures. No rhyme or reason as to why they started out of the blue. We tried nearly every med that was available. I had a left temporal lobectomy and was seizure free for 14 months, then the seizures came back with vengeance. We tried more meds, to no avail. Then in 1997, I had my 1st VNS put in, and that helped tremendously, but it hasn't stopped the seizures. Since '97, I've had two replacement batteries because I was running out of options.

I bet in 20 to 30 yeas they'll finally know what their talking about, have a cure, but now we're all guinea pigs.

That is what I said 20 years ago when I started having seizures again after surgery. But, a cure is still far, far away. 1990 was "The Decade of the Brain", and the brain is sooo delicately involved that it will take many more decades before they will ever come close to a "cure".

So Yes, we have all been guinea pigs!

 

[DayDreamer]

If I have to have this disorder, I am grateful for many points in my life. I have never been tested to be a witch even though I can swim and have seizures both. For some reason in the last few decades, to have a medical condition does not seem such a bad thing. Some people actually seem to desire and flaunt it. I do not understand why, but so many people I see and know seem to do this. Look at me, listen to what I suffer. In previous generations, you would have shut your mouth and tried to appear as healthy as possible. Does it show martyrdom? I have no idea.

Neurology continues to make advances. It is an awesome subject to study. We are now aware that neurons continue to regenerate. I like to participate in medical research with my conditions as it will hopefully benefit myself and the advancement of medicine.
http://www.epilepsy.com/clinical_trials

I hope with more research, epilepsy will be classified into its individual disorders based on biochemistry which will hopefully all be better controlled.

 

[QueenieKP]

I am not sure if it's a desire to 'flaunt' a medical diagnosis but perhaps a desire to demystify and raise awareness. Perhaps it's why we know long have sanatoriums for 'Epileptics and the feeble minded' and we're no longer forcibly sterilised.

But that's slightly off topic from welcoming Pulpfiction to CWE.

I had E for a decade it was controlled for a decade (and 8 of those years I was off meds) then I had a seizure out of the blue. I think it's really natural to ask now and to question whether the professionals know what they doing (and I genuinely beliece they try their best), but getting the right meds seems more art than science as we hop of the med-a-go-round.

But whatever you are going through you can be sure someone, somewhere on the board will know what it's like.

Q

 

[DayDreamer]

Society has changed. My grandparents did not speak of their medical conditions and viewed those who did as hypochondriacs or desiring attention. I am not saying this. What I mean is that I am not viewed as badly to have a medical condition today as I would have been thirty years past.
True understanding and communication can be quite difficult for me.

 

[N Sperlo]

I'm just glad we have come as far as we have.

Am I a half glass full kind of guy? No. It's all the way full. Half is just full of air. Perception is key.

 

[QueenieKP]

Not meant as a critiscm Daydreamer, was just commenting that society does allow us to talk more openly about epilepsy which has had such a maligned image over the decades. So while I do think it will be great to see where medically and technologically we will be in 20 - 30 years, at least we're not being burned at the stake like poor old Joan of Ark.

Q

 

[chmmr]

Hi Pulpfiction, just a thought about the hair loss-it could simple be the post partum hair loss that many women have. I lost a ton of hair for months and months after i had my sons starting around the 3 onth mark

 

[PulpFiction]

Trew chmmr , I did have hair loss with my first born but not for this long I started googling seizures and hair loss and a bunch of posts come up from people on keppra so who knows maybe it has something to do with it, maybe not, feel like I'm in a big boat of maybes lol.
I want to be optimistic, really I do. Believe me I'm actually the one calming my family down and telling them "it's no big deal, really I'm fine" because their always worried around me. For the first time it was nice to just speak (or type) what I'm really feeling here. I'm not an outwardly downer about this thing. I can't be. I wouldn't want to be. I'm just so sick of these waiting lists, you'd think this be one of those "priortiy" kinda things but it's just sad to be in an ER and all the doctors can say to you is "follow up with your primary or neurologist". So we stopped going to the ER after the third or fourth seizure, there was no point. I do feel very lucky that I don't get 100 seizures a day and that mine last only for 1-2 minutes. My heart and prayers go out to all of those who suffer worse. Everyone needs a venting post and thank you all for listening. God bless.

 

[Cint]

I started googling seizures and hair loss and a bunch of posts come up from people on keppra so who knows maybe it has something to do with it,

I mentioned in my previous posting, I take 3000 mgs. of Keppra and so far, haven't had any hair loss. I know Lamictal can cause hair loss.

Here is a good source for drug info/side effects:
www.drugs.com

And another website that gives a very comprehensive view for seizures and meds: (not that this isn't a wonderful website, too, Thanks Bernard)

http://www.epilepsy.com/epilepsy/main_epilepsy
http://www.epilepsy.com/epilepsy/seizure_medicines

So we stopped going to the ER after the third or fourth seizure, there was no point. I do feel very lucky that I don't get 100 seizures a day and that mine last only for 1-2 minutes.

Your right, there is NO point in going to the ER for seizures unless they last for more than 5 minutes. Going to the ER every time one has a seizure can be very costly.

 

[KatieCoy83]

I'm on both keppra and lamictal. Keppra they believe has stopped working so they're slowly switching me to lamictal. The only think I've noticed is weight gain, not a lot just increased when lamictal was introduced. Seems to have leveled out though.

I had absent seizures probably all my life but my parents knew Jack about epilepsy and just thought I was in "lala land". Mine were caused by a lesions also. Deformed blood vessels. A few years ago it leaked. I started having complex partials. I'd run around the room screaming. I was about 25 and I remember my mom covering my mouth and squeeze my head to hide me from others in a restaurant. During the MRI viewing officially diagnosing me, she laughed saying me nose was crooked and asked the doctor if I'd done something to cause it myself. Bothers me still but she's my mama and I love her tons but I guess she wasn't sure how to deal also.

I'm 30 now and still being straightened out. It was removed but scar tissue left simple complex ones. But that's life I guess.