I had 2 simple partials yesterday after 2 1/2 months sz free

[Belinda5000]

I'm angry after having my seizures start back up.

I was doing great and I had 2 simple partials in a row yesterday. I'd gone more than 2 months seizure free, so I don't even know why I even try anymore.

Belinda:twocents:

 

[Nakamova]

I don't know Belinda, 2 1/2 months seems a pretty darn good record. Maybe the simple partials were just a fluke? I hope you feel better today.

 

[Cint]

I know that miserable feeling, Belinda, but hang in there. Let's hope for another 2 1/2 seizure-free months.

{{{HUGS}}}

 

[Belinda5000]

I should of known better than getting my hopes up.
In 51 years I've never gone a year seizure free. I might have gone 9 months once but I was living by myself and I never remembered my sz's except when certain things happened.
Belinda

 

[masterjen]

I agree with Nakamova. After the long stretch you had with so many seizures, 2 1/2 months seizure free is fantastic. We've all been there, with stretches of being seizure free only to have them come back. I think you should be thankful you had the 2 1/2 good months, perhaps regard the sp's a fluke, and examine carefully to find what the causal factor of the recurrence might be.

 

[Fedup]

Belinda5000

2 1/2 months is a good, actually its a long time. So start over again and see if you can go longer, try not to get so tense. Belinda there is no bigger disappointment than when this happens but remember the joy you felt every day with out a seizure. Go on , give it another go we are with you.

 

[Cint]

We've all been there, with stretches of being seizure free only to have them come back.

onder: Really? I just read your profile and it says you've only had seizures for 4 years, mostly nocturnal. So how in the world could you say "we've all been there"? Belinda's had her share of seizures for OVER 50 YEARS, and she and I've had brain surgery, tried numerous meds and had the VNS surgery. Have you been down that road?

I think you should be thankful you had the 2 1/2 good months, perhaps regard the sp's a fluke, and examine carefully to find what the causal factor of the recurrence might be.

I think you should examine carefully what you say to those who've been thru hell.

 

[Cint]

Belinda there is no bigger disappointment than when this happens but remember the joy you felt every day with out a seizure. Go on , give it another go we are with you.

I think she is at the same point I am at in my life with E. There is NOTHING else to try. At least that is where I am at. Can't do another brain surgery, already have the VNS, no more new drugs to try. I have refractory E and so does Belinda and it gets SOOO disappointing when we've tried everything out there and the seizures keep on coming. It feels like NO ONE understands and NO ONE LISTENS!!

 

[Fedup]

Cint

You Have had this since you were 22, I am sorry for that, you had surgery I did not have that choice neither did a lot of others. But anybody who has the choice and goes through it is a brave person. I have had GRAND MAL since I was a baby so you got 22 years more on me. Grand Mal is all I have had as far as I know and the is NOTHING ELSE I can try either, THAT IS WHERE I am at. I have forgotten most of the drugs I have been on and changed from whether it was the side effects or becoming immune to them in a matter of months.

EVERYBODY has their tails and story and everybody's story is bad there is no good when it comes to E no matter the seizure type or the surgery they have. I am the same age as Belinda and it does not get easier as you should know, so a little encouragement goes a long way.

 

[Cint]

a little encouragement goes a long way.

:agree: And thank-you for that! IMO, you're always encouraging and masterjen sounded a bit "harsh", IMO.

 

[masterjen]

onder: Really?
I think you should examine carefully what you say to those who've been thru hell.

Everybody has there own stories of "hell" as you put it. Epilepsy is not the only one. I could tell you plenty, but this site isn't about my other medical issues so I choose not to discuss them here. Advice that goes around comes around, Cint.

 

[AlohaBird]

Cint, I get that feeling of being pissed off at the world, at life. I really do. And don't tell me that I "only" have nocturnal seizures. We are not here to compare who's medical chart is the longest. Like masterjen, I've got my other medical stories to tell too.

But back to the OP. Two and a half months seizure free means you were doing something very right. A couple of break though seizures means that you slipped up somewhere. This could be viewed as an opportunity to learn and to do it better the next time, to get at the root cause of the problem.

The seizures are not a "disease" or an "affliction" in and of themselves. But they are a symptom of an underlying disorder. Maybe you have an intolerance to milk products and had a huge plate of cheesy lasagna the night before. That's just one of many possibilities. Maybe you are sensitive to gluten.

Wouldn't it be better to take a look at what happened and gather clues from it about how to make the next seizure free stretch longer rather than just throwing your hands up and declaring failure?

 

[lindsayschu2]

I think everyone is trying to help everyone, in whatever way we can, with the best of honest intentions. That is all. Belinda I'm sorry. I hope you are feeling better soon.

 

[Cint]

Cint, I get that feeling of being pissed off at the world, at life. I really do. And don't tell me that I "only" have nocturnal seizures. We are not here to compare who's medical chart is the longest. Like masterjen, I've got my other medical stories to tell too.

No one is here to compare medical charts, but I was originally here years ago looking for someone in the same boat as me, with a similar story.

But back to the OP. Two and a half months seizure free means you were doing something very right. A couple of break though seizures means that you slipped up somewhere. This could be viewed as an opportunity to learn and to do it better the next time, to get at the root cause of the problem.

onder: Really? I wish my neuro could get to the root of my problem(s) an fix my brain. My break-thru seizures mean I have refractory epilepsy and they've done all they can.

The seizures are not a "disease" or an "affliction" in and of themselves. But they are a symptom of an underlying disorder. Maybe you have an intolerance to milk products and had a huge plate of cheesy lasagna the night before. That's just one of many possibilities. Maybe you are sensitive to gluten.

Wouldn't it be better to take a look at what happened and gather clues from it about how to make the next seizure free stretch longer rather than just throwing your hands up and declaring failure?

Maybe for you, seizures are not a 'disease', but for me they are an affliction, so I am speaking only for myself. I also have Type 1 diabetes and know when my glucose level drops. Been there many times. 911 has even been called once.

I haven't thrown up my hands and declared failure, but it seems the docs have no more answers at this time for me, but they are still looking.

 

[Cint]

I think everyone is trying to help everyone, in whatever way we can, with the best of honest intentions. That is all. Belinda I'm sorry. I hope you are feeling better soon.

Thanks, Lindsay. Well said.

 

[valeriedl]

First off I'm not going to seizure count with anyone saying the amount of seizures I have is better/worse or the longest I've gone without a seizure is better/worse than anyone on here.

I can understand what you are going through Belinda.

I've had epilepsy for about 12 years and on average I have about 7 seizures a month. There have been times I've gone three weeks into the month without a seizure and think I'm going to make it that whole month seizure free. Next thing I know that last week I'll end up having 3 or more. I've never made it a whole month without one. It's very frustrating and upsetting. Makes you want to punch a wall.

Keep your hopes up and don't give up.

 

[Belinda5000]

Valeried,
I never said I was worse off than any one else. I don't appreciate being attacked either! YesI keep arecord of my seizures because I have never had decent control.
I think it's great when someone get control of there seizures, so you think it's wrong for me to want control.

I gave up long ago!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Belinda

 

[valeriedl]

What I said about the number of seizures and how long I went without one was not directed towards you Belinda. Please don't think that! It was just a general 'for example'. Sometimes it's hard to type something in the way that you mean it to be because people may not take it in the way you mean it to be.

I phrased it that way so no one would think that what you are going through isn't better or worse than what I go through or what anyone else does either.

I'm very sorry if I offended you.

 

[AlohaBird]

I think a lot of feathers got ruffled for nothing here. When masterjen said, "We've all been there", that was exactly it. We have all been through our personal versions of hell and back and it serves no purpose to compare the temperatures of each hell.

Belinda, we have all been there, wanted to punch a wall or, in my case almost turned our car deliberately into oncoming traffic just to make all the pain stop.

Nobody was attacking you. Thinks come out sounding differently in writing than they would in person. Since we all know how rotten it can be, some of us were just trying to move on to the positive aspects, like that you have been doing really well and that this set back could help you learn more about the root cause of your seizures. No one wishes you anything but health and healing here.

 

[Belinda5000]

Aloha Bird I know what caused my seizures and I've always known it.

It was the doc who delivered me didn't take me with a c-section, my mother was in labor for 3 days with me.The doc who delivered me used forceps on me and that was what caused my seizures.
Belinda