Thank You

[Necie]

All this has very hard for me. I had a seizure yesterday, and suspose to work today but that didnt happen. My husband is getting frustrated by me being sick. And that makes me feel guilty. Somedays just wanting to pack it up and go where no one knows who I am. I feel like crap 5 days out of the week. So tired and dont feel like doing anything but lay on the couch. I feel like when I tell anyone how I feel they just think it is all in my mind.(that wasnt funny) But I know what I feel. I just wish other people did. How we feel day in and day out, then maybe they would understand more. I could go on and on but there will be more time for that. I feel a little better, but im sure I will be back.
Necie

[speber]

Hope you feel better soon!

[RobinN]

HI Necie - I can understand how you feel. I don't have seizures, but I have had migraines in the past that have gone on for four days, and it leaves me helpless. Did you know that they are classifying migraines in the seizure family now. News to me.

I had them for 30 yrs, but then found relief from taking ionic magnesium
There are some conversations about that here on the forum:
Magnesium
This is interesting too:
Thyroid dysfunction and seizures
Alternative Treatments/Therapies for Epilepsy?

If nothing else this will give you good reading material for the weekend.
Hope you feel better.

[Necie]

Hi Robin,
Boy do I know about the headaches. I had one last week that lasted for 5 days. I hate it because if its really bad I throw up and then right after I have a seizure. I have VNS and used it right after but still had a seizure. I will read the those things. I dont think I will beable to go to work tommarrow so it will give me something to do. Thanks so much.
Necie

[speber]

.....Boy do I know about the headaches.

I see by your profile you are on Trileptal and Lamictal. Did one of those get implemented with the introduction of the VNS 9 weeks ago? I had BAD HEADACHES on both of these drugs when I was becoming acclimated to them! If that's the case you may want to see you neurologist about options!

.....I have VNS and used it right after but still had a seizure. I will read the those things.

Our resident VNS expert Birdbomb runs The VNS Message Board and has some good info there!


Peace!

[BuckeyeFan]

Hi Necie,

A bit of advice on your husband's frustrations based on my experience. I consider my wife my hero for all she has done to help me through E. Let your husband know that you appreciate him and that none of this is his fault. Remember us guys have huge egos. If he feels like your hero, that might help him deal with your illness. E is awful for those of us who have it. However, it is so easy to forget the impact on our loved ones who often feel helpless when we have a seizure.

Just a thought. Best of luck to you!!!

[speber]

[Necie]

Hello Speber,
No I have been on both those meds for a few years. They are the only 2 meds that have even come close to helping with my seizures. I will check the VNS board. Thanks so much.
Necie

[Necie]

Buckeye,
That is a really good point. I guess I have been to wrapped up in all this seizure,surgery,meds, and VNS that I havent really thought how it does affect your loved ones. Dang you made my cry. Thanks for the advice.
Necie

[TeeTees]

Buckeye,
That is a really good point. I guess I have been to wrapped up in all this seizure,surgery,meds, and VNS that I havent really thought how it does affect your loved ones. Dang you made my cry. Thanks for the advice.
Necie

Buckeye is spot on, again <damn smarta$$ >

Epilepsy can be a very selfish/isolated experience. I sooo don't want to tell people, including family and friends, when I've had a seizure and what I experienced at times as I just feel it's MY 'monster' that I must fight.

The problem with me not 'sharing' this information is that they then won't understand why I'm such a grumpy fart afterwards, and what the best way to 'deal' with me will be, after the seizure.

Hence the reason why I'm completely open to my family about my seizure's.

Your hubby must be feeling like he's useless at times as he can't slay your dragon for you. Just tell him it's okay, and that you'll work on this 'together'

[paradise survivor]

Hey Necie, I know how you feel! I used to feel like a gold bricker just layin' around waiting for the next event. My family went thru hell too and my doc was not very helpful especially when early on he 'suggested' that maybe the seizures were not 'epileptic' in nature that maybe I had family issues! What an idiot. Of course since then i have had every test under the sun till I glow like the moon and every one has shown abnormality. Does he give me a straight answer...no, he says I'm an enigma. Trust me I am not that good of an actress. I have never been able to fall unconscious and pee on myself for up to 20 minutes just to get out of doing dishes. ( Actually I don't mind dishes but don't tell anybody)

[Birdbomb]

!


Our resident VNS expert Birdbomb runs The VNS Message Board and has some good info there!


Peace!

Sweet! And thanks for the reference! Now we have a new member! Only 7 to go before we break 1000

Hang in there Necie it DOES get better!

[Necie]

Good Morning Buckeye,
Its been a little bit since I have been on, but wanted to tell you I talked to my husband and told him he was my hero and how much he has done for me since this all started. He told me I was his hero. He said that what I go through every day that he couldnt do it. I told him that I had to do what I had to do to get through. Even though some days I just want to give up. Since then things have gotten better. You truley are the bomb.
Thanks Necie...

[RobinN]

What a wonderful post. I think I need to do that too.
Glad things are better Necie.

[paradise survivor]

Gotta admit- a little honey goes a long way. I called my hubby just to let him know I appreciate all his hard work lately and boy you could hear the 'lift' in his tired voice. E or no E a little appreciation works like magic! Maybe we could start a trend...personal appreciation moments

[BuckeyeFan]

Since then things have gotten better.

I am so glad to hear things are better. No wise man here though, just tried to put myself in his shoes.

Much easier to give advice than to follow it myself all the time, if you know what I mean. My wife and I have had hard times like most others and this is something I thought might help after 28+ years of marriage and 26+ of E. Wow, when I put it like that, it sounds awful. We only had two E free years.

[BuckeyeFan]

What a wonderful post. I think I need to do that too.
Glad things are better Necie.

Robin - you are Rebecca's Hero and too many here as well. If she hasn't already, in time, Rebecca will tell you herself. Until then, we will say it for her. You E mothers out there are great.

They should make a special day just for Mom's. Hey, how about next Sunday!!!

[tinasmom]

Necie -

Great to hear things are going better with you and your husband. I know that sometimes when I am going through an emotional crisis, I think that my husband should be able to pick up on this and it seems that he is frustrated not knowing why I am down. I've always been a person that keeps things inside until I explode. I do have to admit that I have gotten better over the years in communicating what I am feeling, but sometimes I think that I can just get through this by myself.

I thank God everyday for my family dealing with the roller coaster of emotions they have seen me on over the last 1 year and 9 months. Sometimes, I don't know if I could put up with me if I were in their shoes.

[RobinN]

Robin - you are Rebecca's Hero and too many here as well. If she hasn't already, in time, Rebecca will tell you herself. Until then, we will say it for her. You E mothers out there are great.

They should make a special day just for Mom's. Hey, how about next Sunday!!!

I was meaning... I need to tell my husband. He struggles with all of this in his own way. He has let me handle the burden of it, because he didn't really know any other route to take other than the traditional one. It has challenged our relationship over the past two years, but you remind me that without his decent job and insurance we would be in a rut. I need to thank him for many reasons.

We are hitting our 25th year this August.

Thank you for your kind words. I never had any idea that mothering my crew would be as difficult as it has been. I have warned them that I will be counting on them one day.

I'll take you up on the special day... I think I can rearrange my calendar for next Sunday.

[Bernard]

... I called my hubby just to let him know I appreciate all his hard work lately and boy you could hear the 'lift' in his tired voice. ...

Awww...