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Loss of Trust
Thu, 07/26/2007 - 09:31My first seizure was a little less than a year ago. Since then, Ive had hundreds. I had to stop going to school, doing activities and could barely go out of the house.
The first neurologist i saw, made me not trust any doctor. That is completely ruining my chances of getting back to normal. I dont tell the doctors how I really feel before or after the seizures. I am completely afraid of what they will say to me. It is all because of that first neuro i saw. And the worst part about this is, if i am on a prolonged EEG, I always end up freaking out, and thinking irrationally. Then I will fake a seizure to get out of the hospital. I know that it makes it impossible for the doctors to correctly diagnose me. But I guess i am afraid of being diagnosed with epilepsy. I know I have it, but I just dont think I can handle getting a correct diagnosis.
I have lost bladder control 3 times, but I wont tell a neurologist this because I am completely afraid. I dont want to be afraid. I really need someone to help me. I need some advise on how I can trust doctors again. My parents dont even know that I have lost bladder control 3 times...Please help me if you can...
Comments
Re: Loss of Trust
Submitted by SunflowerPower on Thu, 2007-07-26 - 12:57
I understand what you mean about not wanting to tell a doctor everything because you are either afraid that he'll think you are nuts or afraid of an actual diagnosis.
I go ahead and tell them everything anyway, even really crazy stuff, like the way I have problems moving a limb that I'm not looking at or isn't being touched. I almost completely loose muscle tone when I close my eyes for more than 30 seconds. And yeah, the doctor's think I'm nuts, but so what? I'd rather be thought of as crazy than dishonest, and because you're not a doctor, you never know what symptom will make clear an obscure diagnosis.
There are many symptoms I've had that I haven't told my parents about as well. I really don't think that they want to hear about it anyway, but I'm always sure to tell my doctors.
Of course you are afraid and anxious. I am too. Thats OK, and it's very natural. The problem is you are letting your fear and anxiety stop you from living your life fully. I suggest that you see a psychotherapist to help you deal with all this fear that you have. A correct diagnosis is scary but it will allow you to get proper treatment, and allow you to live your life again.
Which is better? Wouldn't you rather be going to school and working be happy and living with a diagnosis of Epilepsy or living at home having seizures every day with no life and never with an understanding of why.
Good Luck Bee.
Be Bold!
Re: Re: Loss of Trust
Submitted by Bee91 on Thu, 2007-07-26 - 13:14
I was on Dilantin and that helped a lot. My regular pediatrition started me on that. He is the only doctor I feel I can trust. He was the one who told me I had a seizure disorder. Now Im not on anything, but am on a Gluten Free diet. I dont want to be on this diet forever even though it has been working. (I love Granola bars) Ny pediatrition is trying to get me another neuro appt. so he can start me on Lamictal.
I know I should tell the doctors everything...I just wish i was a little more courageous...I am truly trying to let the neuros do their job, but because of what happened it is making it extremely difficult.
As for the therapist...I am going to a neuro-psychologist. He's helping a lot. But I dont even trust him as much as I should. My next visit, I am planning on telling him everything! Cos I know if I was to have a seizure that was long and I didnt tell the truth, my life could be in trouble...Thank you so much for your help! I am truly trying my hardest to trust people again...
Re: Loss of Trust
Submitted by kaidi on Thu, 2007-07-26 - 11:07
What was it about that first neuro that made you distrust doctors? I have many moments as well when i don't trust them, but I always tell them the truth about my seizures as a rule. If it turns out you have epilepsy, the only way to have fewer to no seizures would be to allow the doctors to do their jobs and try to find something that works for you. If your insurance allows, try to find a doctor that you feel comfortable with so that you can trust them with the information they need to treat you correctly. If you give them fake information they could end up treating you with a medication that makes your condition harder to deal with, have you ever considered that? Getting diagnosed is scary, but your main goal should be to get better, not worse, and the right neurologist could help you get there. And definitely at least tell your parents the whole truth, they are only there to care for you and protect you. Good luck!