Journal

   I haven't been active here for some time.   I have been peeking in, every now and then but not much more than that.   I got so discouraged with my Epilepsy and seizures that I decided if I didn't see it all the time, here, and I didn't talk about it, that maybe I wouldn't feel so bad about it.  Ha!!   It really doesn't work that way.

After being put on a new med a while ago I started to see an improvement.   In spite of the Neurologist, who I had felt had given up on me, I was starting to think things were getting better.   And they did.   For most of the summer. I was so pleased and was having a great summer with my family.   Things were looking up.

Fast forward to now....the seizures have come back.  The auras have come back and the problems this whole thing brings with my vision have come back.   I am getting the flashing lights, the lights that seem to come out of nowhere, rushing toward me, the flickering lights and sometimes the vision in one eye goes completely black and the other eye gets tunnel vision.   Even though I know they aren't real, the "lights" SEEM so real that I instinctively cover my eyes or dodge out of the way.   It's very scary for me.  Never knowing when or where it is going to happen.  And not knowing what to do about it.   Some meds seem to have a short life span with me before my body begins to reject them I guess.

My  "nasty Neuro", as I like to call him, seems to think the vision problems are probaly not related to my Epilepsy or seizures or auras.   He waived his hand and dismissed that right off the bat.   Instead he says it is probably a type of migraine, without the migraine part.   I think he is nuts!!!!!

After 35 years of always respecting and believing everything the docs have ever said to me I am now at a place where I don't trust them as much.   Not good.   To his credit, my "nasty neuro" has set an appointment for me for mid Sept to see an E specialist.   This will be the very first time in my life to see one.  (can't remember the title of the doc at this moment)...Epi....  something or other.

It seems a bit late in the game.   I almost cancelled the appoint. because I am afraid of getting pushed to the side again.   But no.   I will go.   One more time I will trust.   I do have this thing with trust issues.   Once I feel it is broken, I am one to pull away.  

I'm just a bit down right now and needed to write and at least I know anyone that reads this if anyone does, will understand my feelings.   I am just going through moments of feeling like this.   Luckily, it doesn't stay with me more than a day or so. 

I had the Double Length Sleep Deprived EEG....that was a trip!   It produced some results so that is good they tell me.   More on that later I am told.

So thats it.   Nothing else to report yet.   I did have a terrific summer though and got a new camera.  My first camera in about 20 years.   So this whole digital thing is foreign territory to me.   My 10 year old grandson Jordan showed me a few things so that helps.   Now everyone is running from me....they know I take the camera  with me everywhere I go!   Quite a learning experience for me.   But it is fun to learn something new.

My honey, Doug,  has been his usual wonderful self with me.   I don't know how I got so lucky there.   I have this theory that everything I have gone through in my past has led me to the love in my life now.   I believe everything happens for a reason and that a lesson is to be learned from all things.   So, that is my story for tonight.

Be well all my DS friends and please forgive me for being absent so long.   I just have these things to take care of......I will be back soon to participate more as I should.   Thanks for reading this.   God Bless you if you did!

Be well all,

Ruth

xoxo

It's been more than a month since I have written in my journal and I know it is long over due.  Thank you to my friends who have nudged me along and sent encouragments my way.  I am sorry I haven't been in touch.

In my last journal I explained the problems I had been having with seizures  (and panic attacks) nearly everyday, and many of those days the seizures came in bunches or clusters.  I had also been looking forward to my appointment with my neurologist then, to get it all straightened out once and for all.....so I thought.

I have always thought that getting this E under control really was just a matter of finding the right medication for ME.  I still think that.  I have had Epilepsy for 34 or 35 years now and I have gone through periods of time where things seemed to be in control.  Then something would happen...don't know what, and I would be starting all over again just as I am now.  It did seem to go on for longer this time but I just thought I am older now, things change, that's just the way it is....right?

So I saw the neurologist and just expected to get put on a new med.  My hopes were so high, I felt excited to be there (crazy I know) but after all, this time may be the time to get the med that was right for me.

He looks at my blood results, doesn't even turn to look me in the face and says There's nothing else he can do for me, he's going to send me to someone else. !!!!!!! Shock!!!!!!!!  That was how I felt and I didn't hear much else of what he may or may not have said after that.  All that kept echoing in my mind was there was nothing else he could do!

So this is mostly why I have been inactive most of this time.....trying to figure this all out.  He did say he was going to send me to a specialist....I said to him...I thought that was what you were!   Anyway, he set up an appointment with a neurologist that specializes in Epilepsy.  They will also be doing a "sleep deprived double length EEG".

When I left his office that day I felt like I had been punched in the stomach.  He wrote out another med and said, here, try this....and I left.  I kind of felt like a zombie.  Got out by the elevator and burst into tears.  Again, my hubby Doug seems to have some psychic ability (ha ha ha)my cell phone rings and it's him....."everything OK?" he says...."I'll be right there".

Nellie if you read this journal, I want to say thank you to you for caring enough to phone me.  You understood exactly how I felt and why I felt that way.

So since that visit to the doc I got gradually inched up to the full dosage of the new med.  I haven't had any seizures since I have been on it.  I still get the panic attacks and I have just started getting some side effects.  I guess that was to be expected since the full dosage started about a week ago now.

Over-all I am feeling better with no seizures right now....I could do without the  side effects but we'll just have to see if they last or go away after my body gets used to it.  Here's hoping.

Sorry this is so long. :(

I am still kind of pissed at that doc!   And I will do this Special kind of EEG and see this specialist but after 35 years if they think I am just now going to do a bunch of the other special tests I know some people have done.....they can forget it!!!  Many tests and conditions I didnt even know existed until I joined this site in Jan 2008.  How come the neurologists never tryed any of these special things before?  Too late now.  Not for me.   If I was just starting out with this E in my first 5 years or so I would but not now. 

So that's it for now...at least the summary.  Thanks again to Nellie especially and thank you Darrell for looking in on me from time to time.  There are alot of others too that have taken the time to send a kind word...thanks to all of you.

I hope all my friends are keeping well....I have been looking in on everyone from time to time but I was just not ready to participate while I was going through all the seizures and everything else.

If you have made it down to the bottom of this page, bless your heart!!

Thank my friends

Ruth

xoxox