Telling the truth to my doctor

[Janellie8]

Hey everyone!
I have an appointment with a new neurologist in December! I am really excited. I've had epilepsy since I was six and when I went to my old neurologist, I would lie to him and tell him that I wouldn't have any seizures when I actually had several a day. I would be ashamed and embarrassed to tell my doctor about it. I thought that he would make fun of me for having them. I was scared. As a six year old I felt so alone and I really didn't know what was happening to me. I hated it. The lying to my doctor went on for several years, that he maybe thought they went away for good! I wish. I would even lie to my mom and would tell her that I didn't have any seizures- this made me so sad I would cry myself to sleep. I would cry and always asked God, "why me, what did I do to deserve this?" I was embarrassed that I had epilepsy and my two younger healthy brothers didn't. I was so jealous, I wanted to be healthy! But this is just how it is and nothing will change if I keep lying! So coming December I am excited to tell the truth about my epilepsy!! I am going to be honest and hopefully get to change my medication because I don't think its working Anyways, wish me luck!

Janellie

 

[Cint]

Janielle,

I am happy to hear you finally realized you need to tell your dr. the truth about your seizures. You're only doing a disservice to yourself by lying. We all ask that question "why me?" once in a while and we won't always know the answer. And god knows we all want to be healthy like the rest of our family and friends. But remember, it could also be worse. And your the one in control by being honest.

Good luck!

 

[alice123]

Good Luck!!!

I had the same problem and the embarrassment still affects me. As a person with a slight learning difficulty I kept it to my self for almost 2 years. Doctors have not asked me why yet but yets hope they just assume its just because I am disabled.

Just be honest and it will get easier. Writing it down helps. I went to the neurologist un prepared and mucked it up. I will be writing it down next time.

It gets easier and easier talking to people once you realize that they are just there to help and listen. I now like going to the doctor rather than talking to my parents as I know they are non judgemental!!!

Being honest is a great step to a more positive life.

 

[Zolt]

The truth will set you free - lot of meaning in that. Plus when you tell the truth, your memory won't be clogged with a bunch of lies, that later on you won't know where lies.

Clint was spot on about the "why me". I also asked that question a lot when they discovered my brain tumor. But then i asked why didn't I die like most of the other people with brain tumors, why was mine benign. Who knows the answers to that question maybe we are being tested, by someone up above? But that is beyond the point, the point i want to make is that it's irrelevant and just like pulling straws we just happened to get the short one. Doh!@#$

We just have to deal with it and enjoy life the way we can to the best of our ability.

LIfe is already too short not to.

iano: op:

 

[niceguyVZ]

It's good to tell the truth. I'm about to go to doctor but i dont want to tell the truth either cause then i won't have a driver license.

But it you don't drive, then no need to fear about telling truth

 

[Cint]

But it you don't drive, then no need to fear about telling truth

And no need to fear of seizing while driving and totaling your car or worse yet, killing another driver!

 

[Zolt]

Nice guy,

That is a personal choice you must make. Lot of what if's involved with that one, and that only you can answer. Sometimes you have to do what you have to do to keep your quality of life. The docs are there to help you and they can't help if they don't know all the facts.

iano: op:

 

[alice123]

And no need to fear of seizing while driving and totaling your car or worse yet, killing another driver!

Although I do not drive. I have not handed my driving licence back. I am sure thats against the law but atleast I am not driving and people have done worse than me like take drugs and kill people.

Doctor has not told me to give up driving yet even though I say I am exhausted during the day due to nocturnal episodes.

 

[Cint]

I also asked that question a lot when they discovered my brain tumor. But then i asked why didn't I die like most of the other people with brain tumors, why was mine benign. Who knows the answers to that question maybe we are being tested, by someone up above?

I had a friend who led a healthy life and gave me rides and helped me out. One day her grown son, who was also a fireman, brought his kids over to her home so she could watch them for the day. But she didn't answer her door. It was very unlike her to not be up and perky. Her son went in the house and found her in bed still, unconscious. He called 911. After several days of testing, they discovered she had a cancerous brain tumor. It was in a place that was inoperable and they could only do a limited amount of treatment. She was gone in 18 months.

After her passing, I was feeling guilty because she suffered the brain tumor and didn't have a chance and here I am still alive and breathing, walking, talking. I only have E and have asked "why me?"

I met a mother several years a go who lost her 17 year old daughter to SUDEP. Once again, I felt SO guilty for still walking on this earth and this young, beautiful girl was taken so soon.

So my point is, we may never know when our time to go is, so it is best to be honest NOW and tell your docs your symptoms. There is NO reason to be embarrassed in telling a doctor. They have heard it all!!

It is the PUBLIC-- family, friends, neighbors, etc. that need to be educated.

 

[masterjen]

Hi, Janellie
A wish for good luck from me I'm glad you made the pledge to yourself to tell the story as it really is. And definitely tell the whole story so you can be put on a medication that offers you better seizure control. Keep us posted on how the appointment goes!

 

[Belinda5000]

Janielle,

I always told my neuro of my seizures. I even told him when I messed up with my meds and accidentally took the wrong drug instead of my meds and my seizures went through the roof.

I've never driven and I take public transit, but being honest with your doc is very imporant.

 

[Janus]

I have been having a hard time telling them the truth myself. I have been having absence seizures lately and i need to see him again and do not want to tell him about these. I want to change meds but last time when i was weaning off of keppra and onto lemictal i had some big public T/C's so back on keppra with horrible side effects. I do not know what to do. I believe in telling the truth, so maybe i'll just be straight with them and say" I really do not want to tell you about how its really been and this is why..."

 

[mejohn1]

I agree that being truthful with your doc is the right thing to do. Having said that.....we each have our own set of burdens and life situations, no one I know has a "perfect" life. In certain situations, less is more. I was able to manage my life with E for 27 years without meds, and most people didn't even know I had a "problem". It was my own little demon and I learned to live with him. Granted, I have a very manageable type of E, mainly 10-20 second partials and many days with aura's (today for about 2 hours actually), which has made daily living easier to handle. Yes, I've had a couple of close ones on the road and who knows how many times I've held onto a ladder for dear life; but I managed. What I'm saying is that where I am now; drugged up, forgetful, grumpy, not able to drive, and am currently "under doctors care" is far worse than where I was a year ago before I decided to seek help for my problem. I should have just shut my mouth...
Disclaimer: I do not condone being untruthful to your doctor or am I advocating lying to anyone. I'm just stating how my particular situation has been made worse, and I feel like I shot myself in the dang foot. I'm just saying...

 

[marty]

Hello
My life & business was freight transport with my own semitrailer then I blacked out driving , I didn't know what was wrong I presumed that I fell asleep , on the second time that it happened I ceased driving , hell it was hard to stop it was my life and also my income , I didn't know what was happening and if you have a accident and kill your self well you are not around to see it , however if you wipe out a family in a car ! well bugger me you have to live with that for the rest of your life plus a possible criminal conviction for not declaring epilepsy to the authorities , the way I see it if we don't stop driving and lie to the doctor when we are having seizures in the future we all run the risk of a blanket ban on driving for anyone with epilepsy that's under control or not , I am very fortunate that I can now drive a car ( not my semitrailer ) but bugger me it must be very hard for those that cant loose the seizures .

 

[Janellie8]

Thank you everyone! I now realize the importance of telling the truth, especially about epilepsy. I was afraid and dumb for not telling my doctor, but I'm not going to be afraid anymore. I'm not going to sit in the waiting room with my hands all sweaty and thinking of lying to my doctor about how many seizures I have had. I am not going to ask "why me?" It is what it is and I will have to adjust my life a little to get through it. As many of you lovely people have mentioned, the doctors are only here to help! I just have to trust the fact that they not here to make fun of me. Honesty is the key. I'm glad I got to hear a lot of your stories and opinions about this. The phrase, "it could be worse" pops up a lot- and you know what, it can be worse. So I just have to keep my head up and enjoy life About driving... if I have a personal driver the rest of my life, that would be nice but right now, I am not too worried about driving. Anyways, all the best to everyone! Have an amazing day!


Hugs,
Janellie

 

[Janus]

Thank you Janellie, And mejohn1. I have the same sort of history, with years of partials and occasionally such strong auras that i crashed my car several times (small accidents no one hurt, by luck). But when i mentioned it to my psychiatrist, she said "they may grow to big seizures and kill you! we better treat that!" So i start taking AED's and start having Tonic Clonic. episodes. now I am scared and try to not drive at all. Lucky for me; there is a strong environmental movement going on about global warming and i can jump on board with those who do not drive for that reason.

 

[Janus]

Oh, and now I may just be honest and keep trying (with the doc.) to find the med that works best for me and has the least side effects. And rest assured all; there is one less potentially deadly driver on the road!

 

[Cint]

I have the same sort of history, with years of partials and occasionally such strong auras that i crashed my car several times (small accidents no one hurt, by luck). But when i mentioned it to my psychiatrist, she said "they may grow to big seizures and kill you! we better treat that!" So i start taking AED's and start having Tonic Clonic. episodes. now I am scared and try to not drive at all.

And my seizures got worse AFTER I had brain surgery for the 4-5 complex partials I was having every day. After the lobectomy, I not only had CPs, I had and still have on occasion TC seizures. In December, 2012 I had a break-thru seizure (CP) while driving and ran head-on into a tree. I totaled my car and, thank god, no one but me was injured, not seriously, just a sore sternum and neck.

So, YES, they could grow into BIG seizures for some. Seizures can induce more seizures.

 

[Cint]

with years of partials and occasionally such strong auras that i crashed my car several times (small accidents no one hurt, by luck). But when i mentioned it to my psychiatrist, she said "they may grow to big seizures and kill you! we better treat that!" .

How can you have car accidents if you're experiencing strong 'auras', too? When I was in the accident because of the break-thru seizure, that is one time I didn't have an 'aura'. Usually, before seizures occur, I do have an 'aura' and have time to get to a safe place. Plus it was time for a new battery for my VNS and that is why I didn't experience any 'aura'.