Father with Epilepsy—new to forum

[mishkanovik]

My name is Mikhail and I'm new to Coping with Epilepsy. I've been researching about epilepsy since my dad had a seizure last November when he was sleeping. He never had a seizure during 20 years (since I was born). He had a treatment with Phenytoin since he was 18 'til his early 50's and well, since this recent seizure he started his Phenytoin treatment once again (now he's 72).

His first seizure was when he was 18 and it was caused after hitting his head during a work out. This last seizure appeared just a few days after falling and hitting his head once again. The problem—basically—is that he started this Phenytoin treatment but it is causing him a lot of pain on his hands, knees, fingers, back, neck and even head. My "research" has shown that many of this treatments use to cause this kind of symptoms. The problem is that they're getting even worse. He absolutely unable to even move his mouth early in the morning when he wakes up, but after a few hours he walks, talks and is able to do normal things (still with pain).

After a few blood tests, nothing strange appeared. We thought it was something terrible but doctors don't know what to do. The doctor that was following his evolution said she's not going to waste her time anymore and she thinks he's making up everything and manipulating us. The other doctors say they can't send him any kind of treatment because they might affect his epilepsy treatment.

So well, basically this is my story and we've been like this since November.

Thanks in advance.

MK

 

[jyearta]

Hi,:hello::hello::hello:

I sorry your Dad and all his family is going through all this. He is lucky to have you in his life.

For the life of me I don't understand Dr. saying that people fake this for attn.

I would go to another Dr. a third or fourth one if necessary.

I'm 61 I'm on Dilantin and Clonazepam, but there are so many meds. out there and we all react diff. to diff. meds.

Are you and your family keeping a seizure diary? This will help both you and his Dr. in seeing a pattern of any kind or triggers.

Triggers can be from lack of sleep, infection, new meds. , stress, there are many more.

 

[jemsister]

Wow, time for a second opinion if you ask me. Sorry he is going through this! =(

 

[Chaz1]

welcome to CWE. So sorry to hear your father is suffering.

new doctor and complaint filed for this current doctor for such violation of your fathers right to GOOD health care is on the cards.

 

[cazzy]

that one first generation e drugs did not think it still used.your dad needs new consultent asap

 

[Nakamova]

Hi Mikhail, welcome to CWE!

It's often the case that the elderly require lower doses of medications than younger people -- so it's possible that even with the "correct" target blood levels for the Phenytoin, your father is on too high a dose. Regardless, it sounds like your father needs to switch neurologists -- no point in working with someone who is unwilling to listen. His new neurologist should be able to discuss options for reducing the Dilantin to see if the side effects dissipate. It's also possible that a different med would work better -- there are many newer meds out there to consider. A third possibility is that after a a symptom-free period, he could consider getting by without medication at all.

Do you know what caused his recent fall? Is he on any other medications, or have other health issues that are worth taking a closer look at?

Best,
Nakamova

 

[Intothatendlessblue]

Hi,

I'm sorry that your Dad and your family are going through this. It's going to be tough but stick together, things will get better. I'm with everyone else, its time for a second opinion. If you can get good help from this doctor, start looking around for another. You've each got to be a health advocate. Let us know how it goes. Sending lots of good vibes, and hope for an understanding (and competent), doctor your way.