How frequent are your partial seizures?

[LJ-Bain]

I know that usually people experience their partials more often than t/cs but I wondered what was standard?
I'm at about 5 daily and more depending on other internal factors.

What is everybody's normal?

[qtowngirl]

Hi LJ,
Unfortunately there is no standard. It just doesn't work that way, however if you're having them really often that is reason for neurologist appts. Either meds need to be upped or changed, or if possible rid your life of a certain trigger, esp. stress, if that is something you're dealing with.
I'd say five daily though is quite a few. Are they really every day? I'd make an appt. for sure.
Put it this way, when my epileptologist found out I even had a few over a month's time she upped the dose of one of my drugs. The goal is to have none or as little as possible, but like I say everyone's numbers are different.

[P-Funk]

Last year my meds were changed and I was only having a few a month which was great. Recently, they have become more frequent. They cluster so I will have a bunch for a few days and then they will leave me alone for a little while. I recently figured out that I will have them when I get hungry. I also am working really hard on reducing stress in my life (easier said than done). My neurologist said I might never be able to get rid of them. I don't want him to up my meds just yet because I finally don't feel over medicated. Changing my lifestyle has already started to help so I want to give it a little more time.

[Rae1889]

Mine are daily. unfortunately multiple times a day.

[qtowngirl]

Rae: any talks with your neurologist about med changes?
That's a lot and no one should have to deal with that. Jesus!
(((HUGS)))

[Rae1889]

QTOWNGIRL: If I had a neurologist.

Its a long story but I was basically dropped as a patient and taken off meds cold turkey. Now my seizures are outta control. bordering on as bad as they were before i went into the ICU 2 years ago.

[Cint]

Before my temporal lobectomy, I was having 4-5 complex partial's a day. Med changes didn't help, thus brain surgery. But that only made my complex partial's turn into tonic clonic's instead. Not as frequent, tho.

[epileric]

I normally have about 5 or 6 a week, except on days like today where I've had 12 so far.

[LJ-Bain]

Thanks for responding guys.
They are still figuring me out and I'm on meds for the first time for 2 months so I'm just starting my journey. I was just wondering what everybody else put up with.
P-Funk...I know what you mean about clusters. Being a woman though I know when to expect my clusters at least. I'm sorry they have increased for you! I hope you can get back to a few a month.
Q-town: it sounds like yours are pretty well under control! That's great! You have a great neurologist by the sounds of it too. I'm in contact with a epilepsy nurse most of the time and they've increased my dose 2 times already so we're working on things.
Rae: I feel for you and the daily multiples! They can be pretty darn inconvenient and draining, can't they? I hope that you can find a new neurologist. Are you actively looking?
Cint: So you understand living with multiples daily...I'm sorry though that you didn't get a complete cure. It's hard to say what's worse I'm sure...more frequent partials or less frequent t/cs.
Epileric: Sounds like a cluster sort of day for you today. Sorry! Take it easy. You're pretty close to daily too.

Good to know how others live. If I could remove stress from my life I would but all I can do is reduce it with 3 kids under 6yrs. I'm fortunate to have lots of help and caring people around me but they can't take away all my troubles.
My problem is remembering to eat. It trips me up. I don't enjoy food anymore.

[qtowngirl]

LJ: Not under control very well at all; tried 3 meds so far and still have more than I should with the odd T-C as well, similar to you tho in that I can't rid the stress (I know they wouldn't be as frequent if I changed my life).
After 3 drugs and 18 years my epileptologist wants to look at a lobectomy; have been on the list for the unit since August.

Epileric: 12? OMG how do you cope? I'd be so wasted, you're a bloody trooper!!!

[epileric]

Epileric: 12? OMG how do you cope? I'd be so wasted, you're a bloody trooper!!!

Thanks!

It seems when I get them en masse that they tend to be less severe (usually).

Today 11 of them woke me early in the morning so I did sleep them off. The One after I woke up was pretty strong though. I am really out of it today though & a bit moody because of it.

[P-Funk]

Thanks LJ! I'll get these suckers under control, they don't own me, they just make things very difficult at times. I started taking epson salts to elevate my magniesum levels. It has worked for some people so it worth a shot.

I can't imagine having three children and epilespy. My hat is off to you . My wife and I are going to start trying soon and I'm concerned how the broken and lack of sleep will effect me. I guess there is only one way to find out!

I'll be damned if I'm going to put my life on hold. Bring it on!!

[LJ-Bain]

P-Funk

That's the spirit! I had 1 child before everything began and 2 during...there is only a small window for child rearing and I didn't want to have any regrets.
Good for you for not wanting to put life on pause because it just marches on. If you have a good support system around you anything is possible! Even sleep!

[Cint]

Cint: So you understand living with multiples daily...I'm sorry though that you didn't get a complete cure. It's hard to say what's worse I'm sure...more frequent partials or less frequent t/cs.

I had more frequent tonic clonic's after the lobectomy, thus we tried 10 more meds and then had the VNS, which for me, has helped tremendously.

[LJ-Bain]

I certainly have heard some success stories with VNS. I'm glad you are one of them!

[Cint]

I can't imagine having three children and epilespy.

I have two now grown kids and they have seen all types of seizures. Taking care of them while having epilepsy and a husband who traveled was quite a stress demanding job. It made them strong.

[P-Funk]

LJ - Good for you having two children after being diagnosed!! It’s admirable that you were able to cast aside any fears and doubts and reached for you deserved!

I think that if I abandon my goals and aspirations because of epilepsy, then it wins. You only get one life and you have to play the hand your dealt. Epilepsy or not, who knows where we will be tomorrow. I choose not to worry about that because I’m not done with today. (I’m starting to sound like a motivational poster)

Cint – I’m sorry the surgery didn’t completely rid you of seizures. Knowing what you know now, would you still go through with the surgery. If faced with the decision I don’t know what I would decide. I guess it would be context driven by my state of health, as it would be for anyone.