Dr says but family does not beleive?

[zorb]

Hi all, I have been having grand mal for about One and a half years now. I am on Keppra 2000mg a day, 1000 morning and 1000 night. I have had 3 eegs, numerous cat scan with and without contrast and nothing can be found why I have this. I am not able to have a MRI due to my heart condition but my family keeps tellin me I do not have Epilepsy but my episodes are getting more intense and about ever other week to every week. My nuaralagist says it is Epilepsy, can someone help me. I had a massive gmal last week that left me dassed for a full day and blooding bad and bruised.
Zorb

[zorb]

I for got to say I am 34 with congestive heart failure and on many meds.
Zorb
PS. Can someone please help me?

[Wally]

Hello Zorb

I'd go with the neurologist. Unfortunately after we have a 2nd seizure, we are considered to have Epilepsy. Where are you in the world? How can we help you?

[Wally]

Are you keeping a log of your seizures? Your neurologist will be able to help you more if you have more info.

[epileric]

Many people have seizures but can't find any medical reason why (idiopathic). Just because you're one of those people doesn't mean you're not epileptic. I was born with epilepsy but it wasn't until I was 39 that a doctor finally found what was causing it. Numerous people here still don't know what's causing theirs.

[Wally]

Many people have seizures but can't find any medical reason why (idiopathic). Just because you're one of those people doesn't mean you're not epileptic. I was born with epilepsy but it wasn't until I was 39 that a doctor finally found what was causing it. Numerous people here still don't know what's causing theirs.

What was the cause?

[epileric]

but They found a lesion on the left side of the hypothalamus (part of the brain above the brain stem). They don't know why it's there but it seems to be the cause of my seizures.

[Belinda5000]

Definitely keep a seizure Diary like wally suggested.
Bring home to your family after a visit to your neurologist the piece of paper your given where it tell why you see your neurologist make a copy of the paper on your printer to show them.

It tells them the reason your seeing the neurologist.


Belinda

[Bernard]

Hi Zorb, welcome to the forum.

You might find the following discussions of interest:

Epilepsy 101 - Part FAQ, Part tips and advice

Heart Disorder can be Misdiagnosed as Epi.

Proactive Prescription for Epilepsy

[morgan381]

Hi Zorb,
Technically, you are considered to have epilepsy after you have had 2 or more seizures, regardless of whether or not a source is found. I wasn't diagnosed until I was 20. Here it is, 7 years later and we still don't know the cause nor do we know where (in my brain) they begin...but I still have epilepsy. Maybe your family is in denial? It can be a difficult thing to accept.
Best of Wishes
Morgan

[skillefer]

Hi zorb! Welcome to CWE. If your neurologist says it's epilepsy, then it's epilepsy. Most likely, your family is just having a hard time accepting it. It might help if they went with you to your neurologists appointment. Try to be patient with them. Epilepsy can be a hard thing for people to accept. That's because they may have some preconceived ideas about the "type" of person who has seizures. Since you have heart issues, make sure that your neurologist and heart doctor are talking to each other. It's important for you to try to get the grand mals under control. (I have them too....) Check out the epilepsy 101 thread that Bernard suggested. And keep a seizure diary....actually, write down everything you eat and drink everyday, and how much sleep you get...as well as anything stressful that happens. Also, write down if you have a seizure. Then go back and see if you see a pattern. For most of us, stress triggers the seizures...or lack of sleep. Also, if you drink lots of coffee, you might want to cut back or switch to decaf. Hope this advice helps.

[hawke86]

zorb,
You're family might not understand what seizures are. I hope your family can understand what you're going through soon. Maybe your family doesn't understand you're going through. Your family could be more afraid of epilepsy then you are.

[zorb]

Thankyou all for the good advice. I think all of you are correct in saying my family does not understand and they are more afraid than I am.
Hope all are well.
Zorb

[Georgiagirl88]

Hi Zorb,

I understand to a large extent how you feel. I went for years having weird "spells" and horrible nocturnal spells. They are horrible, scary and I feel like I am dying. I was told so many time that I was crazy.there was nothing wrong, anxiety/panic..you name it. After a while, my family thought I had nothing as well. I ALWAYS knew differently and never really gave up. Don't you give up either!!! My MRI was normal and then I actually had 3 normal night studies (over a year) with eegs. Finally I had several abnormal eegs showing the seizure activity. Listen to your Neurologist. A detailed log is an excellent idea. Dates, exactly what you experience and feel..anything can be helpful to the Dr.. Also, great idea to take family to your appt. write down any questiosn you have. It is most likely hard for them to understand and especially if they don't have any knowledge of epilepsy. Some of my family members (not immediate family) still don't really get it. It is hard to understand what you can't see or have experienced I guess. But it is like any other illness and needs treatment. Best wishes to you!! And also to your family understanding. Take care and hope you are well!

Michelle

[tinasmom]

Zorb -
Unfortunately, there is still a stigma attached to Epilepsy. The best thing you can do for your family is to help educate them about Epilepsy. Maybe you could sit down with your family and find out why they disagree with the Neurologist. They might just be afraid of this disorder because they don't understand it.

It is very important to keep a log or journal of your seizures so you can share this with your doc.