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        New Message Board Archives >> 2003 Posts >> Do any of you ever wonder??
        
(Message started by: nancyann on Jun 5^th, 2003, 3:46pm)

Title: Do any of you ever wonder??
Post by nancyann on Jun 5^th, 2003, 3:46pm

As I get ready to leave work on my long ride home I get more and more discouraged every day. I get hit just about every day. Usually around 4:30am right before its time for me to wake up.
My seizures are less frequent which are a good thing however, when I get them they are real bad. Last night I didn't make it home before it hit. I pulled over about 10 minutes from the house and it lasted about 20 minutes. When it was over I had a good cry for myself, yelled and God that it wasn't fair.

As I sit here, the shadows are hovering and the pressure of the seizure that I feel will hit some time later this evening waits. I hope that I can make it home before it comes. The HA is one thing but this Seizure shit has got to stop. I can feel it coming and there is nothing I can do to make it go away. The Topomax increases and it is good for a couple of days and then it just breaks through and they start again. Then I have to wait until I can increase it again. At times I think maybe the meds are making it worse. I just don't know anymore. I just know that I am so scared!! Each day I spend three hours of my life in the car going back and forth to work and they are three hours of hell. All I look forward to is getting home to my family every night and all I dread is getting up and going to work each morning.

I guess I just want to know if any of you ever wonder why this is happening to you?

Title: Re: Do any of you ever wonder??
Post by TomM on Jun 5^th, 2003, 4:29pm

Honey, I gave up wondering years ago.

Does that stop me from begging in the middle of a cycle? Nope. :'(

You have siezures, too? I have nothing to add, except, I wish you well and hope your cycle breaks soon.

TomM

Title: Re: Do any of you ever wonder??
Post by cootie on Jun 5^th, 2003, 7:35pm

So sorry girl......maybe it'll all pass and be a part of the past for you.....I sure hope so !! Isn't there a regular seizure med......I may be out of my area here and sorry...but I've known people on meds for them or there kids were in it they take daily and it seems to work. Hopein yer cycle ends quick vibes Pam

Title: Re: Do any of you ever wonder??
Post by suzy617 on Jun 5^th, 2003, 7:42pm

Sorry for your hard times Nancy. I agree with Cootie that maybe you could use a different med to help you control the seizures but I am not an expert on this but I'm sure there are others here who suffer from both. Maybe they can help.
Wish you pf time soon,

suzy

Title: Re: Do any of you ever wonder??
Post by kim on Jun 5^th, 2003, 7:53pm

Nancy, been wondering for a long time.........

Lots of seizure meds out there. Talk to doc. May need dosage adjustment, or perhaps something else altogether.

Best of luck.

Title: Re: Do any of you ever wonder??
Post by Callico_Kid on Jun 5^th, 2003, 8:23pm

Nancyann,
I quit questioning why about twenty years ago, and just had to accept that for some reason I was blessed with these things, and I will just have to deal with them.
Is life fair? NO! Does it matter? No. I just have to deal with it and go on. That does not mean though that the need to question and the need to vent are not there. That is why we and this board are here. It will pass. Stay focused on the positive things in your life and spend your energies on them. Focus on your family and those around you that need the love you can share with them. I found that by trying to help others through their difficulties mine became that much smaller and more easily dealt with. I also found a part of my answer in the scripture verses at the bottom of my post. I don't know where you stand on spiritual matters, but I have found them to be a real comfort to me.

jc

Title: Re: Do any of you ever wonder??
Post by Charlie on Jun 6^th, 2003, 3:38am

Wonder wasn't the emotion with me. It was homicide. I wanted to kill all kinds of things, including friendships.

We know how you feel and we've all been there. Just an aside, Topamax had the effect of making me a nervous wreck and made me feel pretty fragile. That's just me, others handle it fine. Just wondered if this feeling coincides with the drug.

Charlie

Title: Re: Do any of you ever wonder??
Post by TomM on Jun 6^th, 2003, 7:14am

NancyAnn--reread what Calico_Kid wrote. Good advice.

Title: Re: Do any of you ever wonder??
Post by nancyann on Jun 6^th, 2003, 7:52am

Thank you all of you. I have found great strength in my faith lately. I often wonder if the meds are what are making me weak. It's just difficult when I'm in the middle of one of these seizures an I become a groveling idiot. I'm a smart intelligent woman who supports her family. I work very hard. I came through an abusive marriage and divorced my husband while I was pregnant. I an now remarried and have a wonderful family and am trying to do right by my life. It just seems like I can never get an even break. It seems right now that I am living in the middle of a night mare and I can't wake up. I am about ready to come off of the meds all together and just deal with the pain and the seizures. It seems better than the pain, seizures and side effects.

Title: Re: Do any of you ever wonder??
Post by aprilbee on Jun 6^th, 2003, 7:55am

I Definately question why me, especially in the middle of the cycle when I'm getting hit it seems like every hour. But I know that having CH has made me a very strong person, mentally mostly...Maybe without them, I would be a different person, and I like who I am, CH and all.

Hang in there!! :)

Title: Re: Do any of you ever wonder??
Post by CJohnson on Jun 6^th, 2003, 8:50am

on 06/05/03 at 15:46:30, nancyann wrote:

I guess I just want to know if any of you ever wonder why this is happening to you?

I've been consumed with "wondering" why I get CH for about the last month. My way of dealing with it is by trying to learn everything I can about its mechanism. It probably has no impact on how I will deal with the CH physically, but mentally and emotionally I feel like I am doing something about it, and it helps.

A person with whom I am very close told me that smoking the bud of a certain herb kept him from having seizures for years. Apparantly, cannabanoids have been shown, in scientific studies, to have anti-epileptic effects. A google search should pull up enough evidence to demonstrate the veracity of this concept.

Hoping your great strength continues to hold, and that we'll see you on the good side of this struggle very, very soon.

PFDANs
-Curtis

Title: Re: Do any of you ever wonder??
Post by don on Jun 6^th, 2003, 8:50am

Quote:

Is life fair? NO! Does it matter? No. I just have to deal with it and go on.

Spoken like a true cluster head.

Title: Re: Do any of you ever wonder??
Post by Big_Dan on Jun 6^th, 2003, 10:21am

Nope, never really wondered.... I just grit and bear it....

-Big Dan