Success w/ Trileptal, Difficulty w/ Communication

[cw2018]

Hi All,

I seem to be asking a lot of questions, but the resources learned here have been very helpful as I get stabile on meds.

Trileptal has been tested and it is within therapeutic range. I have had 2 little aura/aura-like seizures (simple partials), once when walking for exercise and once triggered by intense emotions/experiences of a private nature (sorry). Aside from that, I seem to have near 100% control of my seizures and events. Even my muscles have stopped twitching. I consider this a success.

A difficulty seems to be that I cannot get in touch with my neurologist (my Epileptologist). I have called twice and sent an email through the hospital's MyChart. My liver enzymes were a bit off (actually just ALT) and I have a few side effects (a little rash under my arms and some hallucinations that are not too troubling all things considered). The nurse sent my concerns to the doctor, but she hasn't followed up as promised. The hospital neurologist in the EMU was supposed to call me about my lab work a week ago and he has not.

I am not asking for medical advice, and aside from a few side effects, I feel better than I have felt in years. I am close to getting back to work and I am being trained as an ABE and reading teacher in exchange for volunteering at a non-profit a few hours a week. My question: how should I go about dealing w/ this communication issue w/ the doctor? Is this a typical experience?

Thanks,

Caleb

 

[Nakamova]

How frustrating! I've had mixed results when communicating with my doctors. Some docs will actually respond to email from their patients, but that's not the case with mine.

I've found that it doesn't hurt to be persistent. If they don't get back to you when they say they will, call again. And again. And again. If possible, get a specific name to ask for, if that will help move things along.

Good luck!

 

[cw2018]

The weird thing is that I had a very strange reaction to the med that is totally unexpected and very positive. When I was really ill, around age 11, I got a dark spot on one side of my face. The side of my body where my seizures typically occur. No one knew what to make of it. I have probably been sick since early childhood, but this asymmetrical spot showed up at age 11, a particularly bad time for my as yet undiagnosed symptoms. When I would get really sick, it would get darker. It was disfiguring and embarrassing to me, a constant source of random questioning from people. The longer I am on Trileptal, the lighter the spot becomes. It has almost disappeared. I wish I had the chance to share this news with my doctor! I think she would find that really interesting. However, I will keep trying.

 

[Porkette]

Hi cw2018,

I was on trilpetal for awhile and all was fine then I broke out with a rash from the drug. I hope this isn't what's going on with you. Whatever you do don't eat grapefruit or drink grapefruit juice because the enzymes in the fruit can mess up the med.
I've had the same problems with my Epileptologist and sometimes I've had to wait a week or longer before I hear from them. The best thing I have found to do is to keep e-mailing and calling then they will get it that you mean business. I wish you the best of luck and May God Bless You!

Sue

 

[valeriedl]

The hospital that my neuro's at has an email account that goes right to him, not sure if that's what a MyChart is or not. When I send him an email I usually get a reply the next day, I've even got a reply the same day a few times. It will either be an email reply or a phone call.

If I call I almost never get a reply. I have to keep calling over and over, sometimes more than once a day, and I'll finally get a call back.

I have a feeling that the difference in reply time is because the email goes directly to my neuro were as the phone call goes from who ever answers the phone, to maybe other people then to my neuro and that's why it takes so long.