epilepsy reccurence

[sam36]

Hello people i came on here just to let off some steam and maybe get some help in the process i have suffred from epilepsy for great chunk of my life from about 14 onwards.I have only had about 5 seizures in my whole life but what concerns me is this latest one had a gap of 16 years and was quite devastating as i thought i had finally put this ilness behind me and the drugs (sodium valporate) was nicely controlling it. I am waiting to see the nuero in about a month or so but i just came across this forum and i have been reading some peoples experiences and was wondering iff anyone else has had any similar stories of long periods seizure free and then for it to return with a vengence like it did with me.Thankyou all for reading and i look forward to hearing back

[PhylisFeinerJohnson]

Yes, I'm sorry to concur I was seizure free for 20 years and then it came back with a vegence. However, the good news is, that although I had to start the anti-epileptic drug merry-go-round all over again, my seizures are now well-controlled with Lamictal and Klonopin.

So there is hope, honest.

[sam36]

Thanks for the reply phylis i am glad you have managed to get you seizures under control finally and i am sad to hear they returned after such a long time.I really do hope ther is a similar outcome for me and the many others i have read about on this much needed forum i will try to remain a regular here bye for now.

[PhylisFeinerJohnson]

Do stay Sam. There are bright, kind, caring, resourceful, funny people here. You couldn't find a more welcoming community. And whatever it is, SOMEONE has been through it before!

Best regards...

[79wot]

I started having seizures when I was 19 and the longest period I have gone without a seizures is 2 years (I am 33). One period was from 19 (after about 4 seizures) and the other 2 year period was from 31 to the present.

In the in between years I average 1-2 a year until I hit 29 and 30 when during a medication change my seizures really increased.

While I have been seizure free for just over two years now I have always assumed I will at some point have another one. But hearing that you went so many years seizure free gives me some hope that the next one will be way down the line.

I am sorry you started up again, but if it makes you feel any better you have given me some hope.

[Elsie]

Sam36, I am sorry to read you are having to deal with this after so many years. I was seizure free for 11 years. The last 2 of those years I was doing a trial without medicine. Back on medicine I was (am) seizure free for 26 years. That is longer than I have heard anyone report. I suppose people who are well controlled don't come to sites like this much.

When I read things like this, I get a little fearful, knowing that I can never take things for granted.

I hope you are able to get this under control again. And welcome, this place has an awesome amount of information and support.

[Cint]

Hi Sam and welcome,

Sorry you're having a hard time with your seizures. I was seizure-free for 23 years, that is the 1st 23 years of my life. The longest I was seizure free was 14 months and that was after the lobectomy for my seizures. Mine came back with vengeance, too. And like Elsie said, I know I can never take things for granted.
At least we are all still on this earth.

[sam36]

thanks for all your support peoplle i have had my medication dosage upped and i am waiting to see the neurologist so lets see where it goes from here i will post back.

[sam36]

Ok just to update i had my appointment with the neurologist yesterday.At first he couldnt even find my notes and asked me iff i had lost conciousness to which i replied well usually concouisness is lost during a full seizure.Eventually he found the notes and didnt seem to think my latest seizure was that big a deal at all and i could even drop my dosage of epilim down to what it was before the seizure.I have to admit i was very confused at this point.Then he proceeded to xplain that i had done very well being seizure free for so long and once in a while even while being fully controlled on medication seizures can slip through.All i can say is i didnt come away from my meeting with him feeling confident or reassured in anyway infact i had to suggest to him that maybe i should have some sort of scan to which he agreed and i am scheduled for an MRI soon.Anyway just thought id update i will see him again in 4mths hope im fine untill then.

[PhylisFeinerJohnson]

Dan, instead of an MRI to placate you, I think you need another opinion. I don't know where you live but for a Comprehensive List of GOOD Neurologists…Epileptologists…Neurosurgeons…and Pediatric Doctors click on http://epilepsytalk.com/2009/10/13/c...atric-doctors/ I hope you'll find someone more on the ball and who actually cares.

If there's no doc on the list in your area, you can try the U.S. World & News Report's 2010-2011 annual report of Best Neurology & Neurosurgery Hospitals in the U.S. http://health.usnews.com/best-hospitals Just fill in the information on the right and you'll find whatever hospitals are near you with scores and grades for their performance.

Good luck. I think you deserve better...

[sam36]

OK i live in england UK and it is a bit difrent here as we have state healthcare so i have to see who they put in front of me and they are on a very stretched budget. I am quite sure the dizziness i am feeling since the higher dose and the nervousness will go away iff i revert to the old dose but am i risking having a seizure.The neurologist certainly didnt think i was when he advised me to go back to the old dose what do you guys think.

[PhylisFeinerJohnson]

Well, perhaps you should hang in there. It takes a while to get comfortable when a dose is changed. Not that I want you to have another seizure, but you have to give yourself a little time.

Fingers crossed that things go well!

[alivenwell]

I'm still having that long seizure free time frame and having fun living a lifestyle and freedom not experienced for many many years. All I can do is be very diligent at taking meds on time, skipping none of 'em and fighting all those stressors in my life.
Still keeping my fingers crossed. Lamictal has done an excellent job for me.

Oh, and btw, I only do brand name. It DOES make a difference for me.

[thoughtiwascured]

Hey Sam. Just checking the forum after being away for a little while and saw your post. I was the same way until a couple of months ago and feel your pain. I see your post was at the end of August, so that was nearly the same time as my breakthrough. It was devastating for me as you, so hopefully you are feeling a little better as I am. Any way, I had "tried" just about every anti-seizure med that there was. None really controlling them completely until a few years ago I had gotten totally disgusted and told the neurologist that I didn't want to be a guinea pig any longer, then threatened to quit taking all drugs completely. He urged me to at least stay on Dilantin and not to stop taking it (I was on 3 different meds at the time including Dilantin).
I did that for quite a while and was seizure free, I was even convincing my self that I was cured. I was trying to get to get the neurologist to set up a seizure study and was going to try to stop taking the Dilantin at that time. Wouldn't ya know it, I had the breakthrough in August, I'm still keeping my fingers crossed and saying prayers.
I hope that the Sodium Valporate or what you can find that works keep your seizures to a minimum, or even better never come back again. Hang in there and take care.

[PhylisFeinerJohnson]

Stan, do you think there's a chance that it was just a break-through seizure?

[Cint]

Stan, do you think there's a chance that it was just a break-through seizure?

What do you mean, "just a break-through seizure"? A seizure is a seizure and break-throughs can be bad.

http://www.touchneurology.com/articl...sis?page=0%2C0

[Endless]

Just to educate me, please... can you explain?

I know Sam has a reason to be concerned about his breakthrough seizure - it sounds like it was a tonic clonic, and those can be quite dangerous sometimes.

I just have simple partial seizures and complex partial seizures. If I had a breakthrough seizure - why would it matter? Mine aren't under control right now, but they were a month ago when I was on Trileptal. Now I'm ramping up on Lamictal, so I don't know if it will get me seizure free like the other med did.

Also, I don't get why my doc is trying to get me completely seizure free. Reduction to once a week or so with side effects at a livable level is good enough for me.

[Cint]

Just to educate me, please... can you explain?

I know Sam has a reason to be concerned about his breakthrough seizure - it sounds like it was a tonic clonic, and those can be quite dangerous sometimes.

I just have simple partial seizures and complex partial seizures. If I had a breakthrough seizure - why would it matter? Mine aren't under control right now, but they were a month ago when I was on Trileptal. Now I'm ramping up on Lamictal, so I don't know if it will get me seizure free like the other med did.

Also, I don't get why my doc is trying to get me completely seizure free. Reduction to once a week or so with side effects at a livable level is good enough for me.

You just did explain. It sounded to me like a tonic clonic seizure, that is why I would be concerned about a breakthrough seizure.

Mine started out as complex partial's, but as time progressed they went into tonic clonic. I, too, long ago went off meds, but I ended up in the hospital because I went status and they started going into tonic clonic seizures without meds for me. The meds controlled the tonic clonic's for me, but not the complex partial's. That is probably why your dr. is aiming for you to be you to be seizure free.

[PragueClaret]

I too have had a recurrence of Tonic Clonic seizures. I had seizures from the age of 17 to 27, and they have recently started again at the age of 39.

I take epilim and lamotrigine, and am seeing a neuroligist later this week.

[Laina_Bravo]

Welcome Sam! I know exactly how you feel. I had started having seizures when I was 5-7 and diagnosed with E that there was no chance of ever growing out of. at the age of 13 I was taken off all anti-epileptic drug meds I was seizure free for 6 years no meds. And than my grand mals started coming back and alot worse. It really is worry some now to ever think i might have a break and than they come back. so I've given up on thinking i'm home free. I just celebrate the free times and when i break through I just keep focused on getting free again. My glass with E tries to stay half full. Hope you stick around here I know it's really helped me.