What's the longest you have been siezure free

What's the longest you have been siezure free

  • Less than 1 day

    Votes: 5 3.2%

  • 1-7 days

    Votes: 13 8.3%

  • 1-2 weeks

    Votes: 4 2.5%

  • 2-4 weeks

    Votes: 8 5.1%

  • 1-3 months

    Votes: 12 7.6%

  • 4-6 months

    Votes: 12 7.6%

  • 7-12 months

    Votes: 17 10.8%

  • Over 1 year

    Votes: 86 54.8%
  • Total voters
    157

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

C0urt:
When I was first put on Tegretol~it was 1969, and I was 15 and the drug was experimental from France~my doctor put me on it cause they were getting great results
with it~so he told my mom that I should take it.
Best thing I did~About 8 years ago I was in the doctor's office in the middle of a check
up when he says "Have you gotten your driver's license yet"???~with a straight face!!!
I looked at him in shock and said "Are you serious?" he said "yes"!!!!

I've wanted my lisence since I was a teenager~ I'm almost 56,still don't have it~but
that's another story.BUt I will get it!!!!
 
I am not too worried about getting my dl back, granted I like in a non-bike friendly area with crappy public transit, if i need to get somewhere, I can.
but i do miss my motorcycle dl the most
 
well

my first tonic clonic was age 11, then eight more between 11 and age 45, then a gynecologist got the bright idea to do a hysterectomy on me. Six weeks later I went into the non stop seizure thingy, and spent 10 days in ICU, was intebated and drugged for the first 3 days. The drop in my hormones I found out was not something relegated to women with seizures. I met a woman who had a hysterectomy w/ no seizure history and had her first tonic clonic FOUR days after the surgery. This subject cuts me to the bone. NO one can tell me there is not a seizure connection to hormones. To this day I can not get a doctor engaged in a conversation about the connection. I get very heated about this , as it was not necessary for me to have the surgery.
This is the first time I have talked about it on this site. After I got out of the hospital I had panic attacks. I would wake up and run out of bed down the hall. It is still hard for me to discuss. I am grateful for the hospital staff that saved my life, but it put epilepsy in the forefront of my life. Maybe it also brought me out of the denial because of the infrequency of my seizures. I could have used a tap on the shoulder and not a kick in the gut!! I still get paranoid 7 years later. I have had a seizure since then, that was about six years ago. My PCP put me on liquid dilantin, and in my opinion that has helped me.
 
That liquid dilantin has been a real life saver, especially after surgery.
 
Depends on what type of seizure you mean :


time without a simple partial seizure : ~2 days
complex partial siezure : 1 month
tonic clonic : luckily, never had one, yet
 
types of seizures

as far as i know tonic clonics are all i have had, although i speculate that i was havin some partials as a teenager, never identified. Also, i understand the jury is still out on auras? warning for seizures or seizures. modifying my diet has changed the frequency of that, as I have made a correlation between the two. My brain has its feelers out for any chemical i ingest, i am certain of that.
 
went on a trip for the past 4 days and spent the whole time doing volunteer work,
I didnt have a seizure the whole the entire time. that makes me happy
 
GIGI - They ask you all of those questions about your history and then never look at it. If this risk is known, it should be revealed to all surgical candidates with E.
 
Or did you think you were seizure free? Well that was me...

I had epilepsy for 22 years. Then another 22 years rolled by without anoher seizure. Home free, right?

WRONG.

15 months ago, I had a drug related seizure that was the mother of all seizures. My heart stopped...they put me on life support...I was in a coma for 5 days...and then in the hospital for 10 days.

Just when you thought it was all over. Kaboom!
 
Last edited:
I've been seizure free for one year which means I can drive now. But the idea of having another seizure "haunts" me. Not that I "think" of it everyday. It's just in the recesses of my mind. A tormenting kind of ghost.

I'm so sorry you had a "kaboom". We never know when we will be thrown. That's why we need to stick together for support and gleen as much information as we can from each other. Peace, Phylis.
 
Up until recently I had been seizure free for two weeks, that was sorta record as of late
 
BuckeyeFan said:
GIGI - They ask you all of those questions about your history and then never look at it. If this risk is known, it should be revealed to all surgical candidates with E.
Click to expand...

Buckeye:

I just saw your thread. The Gyno. that did my hysterectomy, never brought up my seizures as a risk. (I was handed a piece of paper). I promptly dropped him after that. I think as far as women's health, traditional medicine is lagging far behind in treatment. They don't know what to do with us after we are done giving birth, and our ovaries have stopped working. In a perfect world, I would love to go to one of those fancy clinics that specialize in hormones. As now I have thyroid problems, and I suspect being on Dilantin for over 40 years has messed with that. There is no other explanation for it, besides the seizures, I am in great health. I mourn the loss of my ovaries! My energy level has plummeted, even with thyroid medicine. So, I push myself to get through some days, and to exercise, because it does help me.:bigsmile:
 
Gigi,

Seizure meds can mess with one's thyroid. Here is an interesting article pertaining to this issue:

http://www.freundpublishing.com/Journal_Pediatric_Endocrinology_Metabolism/JPEM21p401.pdf

I've been on thyroid medicine for years and I do see one of those specialists, an endocrinologist, only because I have Type 1 diabetes, also.

BTW, I have been seizure free for 14 months now, thanks to the VNS and medication. I only had the VNS surgery because I had been thru a hellish and unsuccessful lobectomy.
Contrary to what some say, the VNS does work for some of us!
 
thyroid function

Hi Cint-

How are you doing? Thanks for the post for thyroid and AED's. I had three small nodules that were found a couple of years ago. They have about gone now that I take thyroid medicine. Except I am taking Levothyroxine, because Armour Thyroid is no longer available. The latter was great, now I feel like the walking dead! I would like to order from Canada, but not sure if I can trust the sites to deliver.
I do believe that the Dilantin has done a number on my thyroid. Grrrrrrr!! Energy, please, I want energy!!
I do have an appointment this month for the first time with an Endo. I have to practice calming myself before I go, so I don't put on my mean face. :pfft: The years have made me aggressive when I go to see doctors now, and that makes them not like me. I have started back to Yoga - good thing!

gigi
 
i spent just over a year in fact i think it was 1 yr and 1 day as i was just contemplating applying for a driving liscence,
if i ever go that long again i wont even contemplate it as i think its a bad idea me being able to drive no matter what,
so lets just keep on buying plenty walking boots lol
 
Longest I've been seizure free

the longest I've been seizure free is a couple of years. I have a drivers license too! I take Dilantin and have tried about all the different medications there are but it seems to work the best for me. The neurologist has just recently put me back on it. I was trying generic Keppra with Vimpat but the longer I went without Dilantin, which was about 5 months, the more frequent my seizures were. I have many different types of seizures but the generic Keppra controls all but the tonic clonic. Seems like only Dilantin controls them for me. I don't think I will ever let the doctor talk me into going off Dilantin again. Having a seizure every couple of years is a whole lot better than having a tonic clonic seizure 3 times in 1 week.:e::e::e::dontknow:
 
i put 3 months, but I was refering to auras, it has been since may of 05 since I had a grand mal.
I will tell you that I use to just try to relax during the aura, but I started speaking verbally during the aura in the form of prayer. Not just to call upon help that I would not have a seizure, but because I had an Idea that since a seizure is sort of a malfunction and misfiring in my brain - that if I forced my brain to do something like speak that I might help keep some control. so far so good. concerning longer periods of time for my auras..... I gave up a lot a stress in my life. Amazingly enough when I have auras or especially before I have a seizure i have often spoken apologies to people that I do not remember. I think that mine are a true sign of some real emotional issues that are aggrivated by stress and the stress that I was under was very long term. I pray that soon I will regain my life back. In the meantime my memory, my fine motor skills, and coordination suffer from the medicine. I am still looking for ways to declutter my life. I have gone back to college and will graduate with my degree this semester. Instead of this being more stressful it has been healing. Once again that I needed to get rid of some things in my life and move toward things that bring more fullfilment in my life. These maybe things to consider for others as well.
 
You must log in or register to reply here.
Back
Top Bottom