2 years seizure free

[SimranAnand]

Hi everyone, I have been suffering from simple partial seizures for 11 years now.. Initially I was on a 3 year course which I did not complete. U know when u can't accept the fact and u feel so helpless in life..

So my condition for worse and now my Dr. Says I'd have to be on medication life long??

Is epilepsy a life long thing? I have been strictly following a healthy diet , a positive outlook, Dnt give up so soon in life.. I have been on Lamotrigine, my dosage keeps decreasing as per my Dr. Observation and I'm really thankful to Gid I have been seizure free for almost 2 years now.

I plan to settle down in life now get married have babies, how easily is this accepted by a person? How do I convey or talk about it?my worry is will my baby be affected to? How do ppl with epilepsy maintain their relationship?

[AmyBadd]

Hi!

Guess what?! I have epilepsy and I am pregnant with my first baby! So excited about it and everything going well so far!

Epilepsy can be lifelong but is not for everyone. My sister in law had epilepsy but appears to have grown out of it and doesn't take medication any more. Unfortunately, I thought this might be the same for me but it was not. My seizures were controlled by medication for 7 years, then after I had reduced the dose I had three seizures. So for me I think it is lifelong. Sadly also, the medication I take is known to (in rare cases) have a bad effect on babies. However, lamotrigine does not have this effect! Lamotrigine was the first medication I tried but it did not help me. This is why I now take a low dose of my medicine (epilim) to reduce the risk to my baby. Having seizures is also dangerous to your baby, so I can't come off it completely.

In terms of relationships, my husband is brilliant. He only saw me have a seizure for the first time recently, but he has always known about it and because he saw his sister have them when they were younger he knew what to do. We have been together about 8 years now. Previous relationships I had were all different. Most of the guys were great and very accepting. One boyfriend I had was lovely, but after he'd seen me have a seizure he acted very strange around me. He obviously didn't want to let it affect us, but it did and the relationship didn't last much longer.

Hope this all helps. You can definitely lead a fulfilling life with epilepsy!! I have completed 3 degrees including a PhD in the last 10 years and now have a great job for a pharmaceutical company. Don't let it stop you, even if you have to stay on medication!

All the best,

Amy

[Yuvan in reply to AmyBadd]

Wow your word really motivated me to keep going some times it feels to give up cause medication suck , we are not alone here i see

[happy48]

HI

I suffered with simple partial seizures as a child. On reaching adolescence complex partial seizures developed as well and continue to this day (approx 7 per month).

I have found that gradually mentioning my epilepsy hasn't worried most people. It was more of a stigma when I was young. My husband and the friends I have from activities I pursue have been very supportive. Some have seen me have a seizure before I mentioned my epilepsy. This made them more interested to know about it.

Lamotrigine is not known to affect babies so I'm sure you will be fine. I was on phenobarb and phenytoin at the time of conception. Phenobarb might have had an adverse effect My pregnancy was good and I have a healthy daughter who will be 40 this year. Also a grandson now.

I have tried most medications and am currently on Lamictal (lamotrigine) and Keppra. These medications are the best I have had for me. I expect i will be taking medications for the rest of my life. Don't let this thought bother you.

Now retired, I am still living life to the full. Keep positive and don't give up. I find being open and honest is the best.

Best wishes

Sue x

[Dino_rgjta]

Until today the Epilepsy is considered incurable, although have proof that in the Association of which I am a part, there are three cases in which the cure is confirmed by doctors to stay in touch in the Hospital I'm medicated.

In case you want to get married and have kids, even as a Person with Epilepsy there is nothing to stop your desire; because you should know that epilepsy in great mass is not considered contagious or from father to son.

Follow face good luck and happy children.

[Kiera49]

Hi I have epilepsy since I was 17 now nearly 50 and haven't had a seizure for 19 years although still on lamotragine. I never had any problems with relationships because of my epilepsy live a full life, have had 3 children 1 of them I had on lamotragine and he is completely fine normal lively 12 year old, none of my children have epilepsy the older too are 20 and 18 so both past the age when I started at 17. I drive which was my dream so good luck x

[Talbot]

You were asking if epilepsy is a life long thing and how to talk about it. I am never afraid to tell people about it, as we didn't cause it, but rather it is a medical condition. One thing I have pointed out to people over the years is that you can't stereotype epilepsy: different people have different problems. I was lucky enough to have brain surgery back in 1983, which liberated me. However, I had been off medication for almost 25 years when an incident at work was diagnosed by the hospital as a minor fit, and as a result I am now taking Lamotrigine as a precaution. At work my colleagues are aware of the memory problems caused by my brain surgery, and are very understanding. I often help out with tasks others are struggling with because of time, and in the process contributing positively to the day's work. Since the fit the other year I am under strict instructions to inform them if I feel unwell. So you see, if you don't keep things to yourself, the support can be just around the corner.

[AmyBadd in reply to Talbot]

I agree. I understand why some people feel awkward talking about it but I find it better for people around me to know, so they know the right thing to do if something does happen. I have a first aid for seizures poster from epilepsy action stuck up next to my desk at work.

[Evangilene]

I had 3 massive seizures which put me in hospital ,aged about 52 and am now on Epilim for life .I prefer to stay on the drug rather than risk losing my licence& to feel some control of my life. I am 80 yrs old and have been seizure free since those episodes. But my daughter has Epilepsy since aged 13 and Hydrocelphalas since birth both treated. The Epilepsy is treated by drugs but as she is approaches 50 her seizures are becoming more frequent ,instead of once a fortnight sometimes they are twice in a week and severe enough to be hospitalised. She would be grateful to hear if anyone else has found this happens as one nears the menopause ?? But I think epilepsy IS for life and there is no cure.

[AmyBadd in reply to Evangilene]

Hi Evangilene,

I don't not yet reached menopause, but many kinds of epilepsy are known to be related to hormones, so what you say makes sense to me.

Many people have their first seizures during puberty and in fact the first time I had a seizure was the same month I had my first period. I was also warned when I became pregnant that the frequency of my seizures might change due to different hormone levels.

Hope that is helpful.

Amy

[jmancometh777]

I am 25 years old, and have had grand mal seizures since i was 2 years old....lucky for me i have not had one in 1 year now. However the one thing that is pretty much fact is that seizures never really go away, they can only be controlled. There will always be a chance that at some point in your life that it happens from out of nowhere. There is no cure for seizures(trust me, i looked into it since i was about 10....).