Understating number of seizures

[MAB]

Has anyone deliberately NOT told their doctor about the umber of seizures they have for fear that the doctor might think you are just seeking benzos.

The seizures are now pretty rare, maybe once every 6-8 weeks since I stopped all diet pop. Before that I would have SPs 3-6 times a week. She gave me 15 Ativan a moth but that was no where near enough to stop the seizures. So many of mine came in waves and lasted for hours - up to a couple days.

I know I should have told her so she could increase, add or change AEDs but lamictial had few side effects and it did help eliminate some of the seizures.

 

[Porkette]

Hi MAB,
I've told my Dr. not to put me on new seizure meds because I have found it just causes me to have more seizures. I had a DNA test done a few yrs. ago by my Epileptologist and they found I was drug resistant to all seizure meds out on the market. What I have done is try the cbd oil and I've seen a big help reducing my seizures with that. I just started it this past month and I only had 5 seizures 2 of them were simple partials and 3 were absence. I usually have 8-10 seizures a month.
I used to drink diet soda and then I began having many seizures day after day. I spoke with my Epileptologist and we thought maybe my meds weren't working anymore so he asked me what I was eating and drinking and the moment I told him I was drinking diet soda he told me to stay away from it because the nutra sweet (aspartame) causes more excitement in the brain which in turn can trigger seizures for some people. After I stopped the diet soda the seizures reduced. I wish you the best of luck and May God Bless You!

Sue

 

[valeriedl]

I always tell my neuro how many seizures I have, this way he will know how my meds and VNS are working. If I'm having more seizures then things might be increased or changed but if I'm having less then things could be decreased or even taken off a med.

My neuro always suggests that I do whatever he might think needs to be done but will leave the final decision to me. Tell your neuro whats going on but if you don't want to do what ever it is that she tells you then let her know and tell her why. Your dr shouldn't force you to do something that you don't want to do.

 

[masterjen]

I always keep track of the number of seizures I've had and tell this to my doctor at my next visit. I have been instructed to phone between appointments if I have had a different seizure type than normal more than once, but to always phone if I have had a tonic clonic (which as far as I know I have never had). I am also to phone if I have seizure clusters more than 2 nights in a row.

I would never not phone, because whether I see her in one of her "urgent" time slots or speak to her on the phone it often takes only minor tweaking of medication to bring things under better control.