[hurtsobad73]

I spent three days in Duke University Hospital under the care of several doctors while having a VEEG completed.

The news, I am not sure whether is good or not. I have seizures. They are debilitating. I can't drive, I can't be left alone for long periods of time. But this seizures aren't caused by abnormal brain activity. They are caused by PTSD. Early childhood abuse (all types, by all family members you can imagine), then later in life traumatic surgery at 29 of complete hysterectomy (wasn't quite ready to give up on having more children) and then just stressful and anxiety and panic to fill in.

I don't know what to do, what to think, or even at this point in my life do I care? My life has been pretty much taken away from me at age 34. What is left?
All they can tell me is I need to confront the issues head on. Obviously they don't know my family.

Besides all this, I have the Fibro with CFS/ME which makes for a lousy day b/c mine never seems to let up. I try to exercise and I get knocked down. Nothing works for this body of mine.

Sorry for the rant.

Thanks for listening - anyone with ideas/comments/well wishes it would greatly be appreciated.

M

[hurtsobad73]

just bumping up since it went off the page...

[Snoopy]

Originally Posted by hurtsobad73

All they can tell me is I need to confront the issues head on. Obviously they don't know my family.

What is meant by confronting - therapy (counseling) for yourself not confronting your family.

It's time to help and heal yourself and going into therapy can do that. Therapy can be a very difficult and long road but well worth it.

[hurtsobad73]

I have been in therapy for 5 years, but it seems anytime certain family members call me, all of this crap comes back to mind. I even have severe nightmares about it. Panic attacks come and go, but to this day I don't know if therapy is helping.

I would like to try biofeedback to see if it helps. Does anyone have experience with this? What is it like? Did it work for you?

Also, confronting the issues head on, the dr. said I may need to sit with the family members, each at different times, and explain to them how they hurt me in the past and how that is affecting me now. I think I can do that, but I am afraid they will just think that I am being a big cry-baby (terms they would use).
What to do, what to do?

M

[Snoopy]

Originally Posted by hurtsobad73

I have been in therapy for 5 years, but it seems anytime certain family members call me, all of this crap comes back to mind. I even have severe nightmares about it. Panic attacks come and go, but to this day I don't know if therapy is helping.

I would like to try biofeedback to see if it helps. Does anyone have experience with this? What is it like? Did it work for you?

Also, confronting the issues head on, the dr. said I may need to sit with the family members, each at different times, and explain to them how they hurt me in the past and how that is affecting me now. I think I can do that, but I am afraid they will just think that I am being a big cry-baby (terms they would use).
What to do, what to do?

M

M, you do understand once you have PTSD it is a permanent part of your life? PTSD doesn't have to be as extreme as in the begining but you can have residual PTSD symptoms.

I chose not to confront. I knew from past and present what would happen - nothing would be resolved just more anger, sadness, frustration and hurt on my part. I chose to walk away.

There are also some who had a hand in my life that I am unable to confront - I have no knowledge were they are or if they are still alive. As for the person who initially triggered the PTSD - what goes around comes around.

For me, the PTSD is no longer about everyone who was involved it's about finding my own way to inner peace. My memories and feelings are mine and mine alone, they are part of me and always will be but I will not allow those memories to take over.

What I have experienced has made me who I am - someone I am quite proud of.

I hope you find something that will give you the inner peace I think you are desperately trying to find.

[hurtsobad73]

Thank you Snoopy. Now that I have had a few days to think about it, my husband and I decided that I should write letters to these ones, but not mail them. He will take them from the house and "do what he wants with them". My guess he is going to throw them away...lol. That way I have said what I need to say w/o a response from them.

You are exactly right. I need to find peace with in myself, in order to feel good about who I am. I am always so hard on myself. Since I can't work and I feel so crappy because of depression, CFS/Fibro, I feel I am a horrible wife and mother. However my son and husband are the GREATEST. They really are. They help cook, clean, do laundry, keep up with the dog and anything else I ask them to do. To beat all, my son is 14yrs old. It is hard to get any teenager to clean their room, let alone to help out around the house. He is very kind and considerate and I don't think there is one day that he doesn't tell me he loves me.

I am definitely thankful for their support. I think that is my inner peace.

[Snoopy]

Hurtsobad, I’m glad you wrote those letters and I hope it’s the start of a new beginning for you. You have a wonderful husband.

Do you Journal? If not then you might try it. I found journaling to be helpful although there were times I thought journaling made me feel worse. I have 3 ½ journals full. I just let my writing take me were ever it wanted. Sometimes my thoughts were coming faster than I could write.

I had so much anger and I learned how to feed that anger. Do you know anger is easier to feel than the hurt and sadness? One day as I was journaling I wondered what it would be like to stop writing about the past and focus on the present and future. So, I started writing about the here and now. That small action changed things for me.

No, my PTSD is not gone nor will it ever be but I was looking at how lucky I am – wonderful husband, 2 great kids, a nice home which is safe and inviting for me. All of this was part of my journaling.

I also found spirituality. No, I’m not preaching religion. I believe everyone has a right to believe or not believe what they want.

Music is a big thing for me – I like a wide range of different music – Rap/Hip-Hop, Rock, Celtic and Christian.

It was the lyrics to a christian song that allowed me to let go of the anger and feel the other emotions and cry. Crying, for me, is weakness so this was a very major step. I hope in some small way this can help you.

The song------

Traveling Light by Joel Hanson & Sara Groves

Well I was doubling over the load on my shoulders
Was a weight I carried with me everyday
Crossing miles of frustrations and rivers a raging
Picking up stones I found along the way
I staggered and I stumbled down
Pathways of trouble
I was hauling those souvenirs of misery
And with each step taken my back was breaking
'Til I found the One who took it all from me

Down by the riverside
(Down by the riverside)
I laid my burdens down,
Now I'm traveling light
My spirit lifted high
(I found my freedom now)
I found my freedom now
And I'm traveling light

Through the darkest alleys and loneliest valleys
I was dragging those heavy chains of doubt and fear
Then with the one word spoken the locks were broken
Now He's leading me to places
Where there are no tears

Down by the riverside
(Down by the riverside)
I laid my burdens down,
Now I'm traveling light
My spirit lifted high
(I found my freedom now)
I found my freedom now
And I'm traveling light

Down by the riverside
I laid my burdens down,
Now I'm traveling light
My spirit lifted high
I found my freedom now
And I'm traveling light

Down by the riverside
(Down by the riverside)
I laid my burdens down,
Now I'm traveling light
My spirit lifted high
(I found my freedom now)
I found my freedom now
And I'm traveling light

Hurtsobad, your not a horrible wife and mother. You are a wonderful person who has gone through some horrible things. And, by the way - I am also hard on myself. I think sometimes we blame ourselves for things we had/have no control over.

[southie]

Hurtsobad:

Biofeedback works but Neurofeedback is even better.
I would recommend that you look into that avenue;
and it's been lately being recommended in Neuroscience
for PNES & NES & PTSD & NEAD.

Neurofeedback has a more positive impact than with
Biofeedback and with much higher success rate. They
are now working on getting Insurance Companies to
recognize it and making it a part of the Insurance plan.
Unfortunately Neurofeedback is an out-of-pocket expense
however, it can be applied towards tax deductions when
you file your IRS taxes.

This is something to look into and Googling it up, you
will find many places especially at Universities, Major
Hospitals with Clinics and Neuroscience Centers who
offers it.

Should give you a positive impact and a brighter future.
No medicine is involved, and you'll be impressed and
yes, your Doctors are involved and everyone works
together as a team-effort and the progress is really all
positive!

Hope this post helps!

[celiacgirl]

I came across your post when searching for information on pseudo seizures or non-epileptic seizures for people with celiac disease or gluten sensitivity. It's underdiagnosed for the folks that present with atypical symptoms and with all of the possible symptoms it is even overlooked when intestinal symptoms are present. I have a twin sister who was also diagnosed. She suffered from panic attacks, depression, ADD... all associated with her celiac disease. I also have an aunt that suffered from non-epileptic seizures and was told she was crazy for years... also can be part of celiacs. Not to get on my soap box... sorry.

Anyway. Just thought I'd ask and put it on your radar in case. I was misdiagnosed for 13 years with everything under the sun. I have the added pleasure of being obese, which is completely against the norm for the classic presentation of celiacs. I will send some good thoughts your way no matter what. I hope everything works out for you.
Take care!