American living in Netherland... W/O Support.

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Stillkelly
New Member


Date Joined Aug 2007
Total Posts : 8
   Posted 8/31/2007 2:32 PM (GMT -7)   
 First of all ,
               I am new here.  Please excuses my spelling, as I am an American living in the netherlands for the last 9 what years. (No US friends here or language To help me ask or express my thoughts or feellings)  and my epilepsy seems to have really ruined my brain....  I have epilespy offically (key word... thought to have it my whole life with out life threating attacks) for the last 2 years.  ( know it sounds wierd, but I think that is how long now)  My  little sister and my aunt also recieved it later in life.(the my family denies that is why I have it also)
  Anyway, I will try not to ramble. (hummm)  My seizures have been controled with my meds. However , I have what I call bad days, when I recieve twitches which I can not control. I compared them to like before you go to sleep.  Some days nothing and some days, I feel like a a lump and slow and confussed.   My memory has left me on days.  I have heard from my kids and DH, that I repeat the same questions 3 /4 times, before some gets upset with me.  I forget things that supposly were said to me.  I feel like a idot.  I ask Did I say that?  (or to my Kids) Did I promise that?  Or "mom don't you remember playing with me on the trampoline yeasterday. "  My inside sinks, Knowing, I have NO CLUE.. "Sure, I did..... BUT I Don't.
   I put away grocieres or things important.  Then I can not find them .  I search high and low, crying feeling crazy and them find them in the wierdest spots....   I feeling myself dreaming all the time.  Fully here but so deep in a tranfix that I cannot escape for I do not know how long. Time escapes me. Some days.
     The worse now is that I cannot get my words from my brain to my mouth.  I am acutally stuttering!!!!!!!!!!  feeling stupid  WHILE MY KIDS LAUGH. Or  my confusion or simply not hearing (for gosh knows why.  I think I am listening to him) what my DH has said to me.  He gets so irratated with me.  Sez He simply cannot have a normal conversion with me.  Truely affects our marriage.  I simply try to do every thing right to please him because I feel inaduquate.  It acutally can make me so nervous to talk around him  when I am in a confusion state in my brain.  I cry and feel childlike and know how upset he gets with this confusion I am having. He literally can storm off. The differnt languages and customs DO NOT HELP ME EITHER!!!!  What you must understand is that I simply cannot form words or sentences normally.  I cannot tell him , I am having a problem at that time.  By the time I can finally see the fog lifting, He has already gotten upset with me.  Hurt, and alone and Very confused and mad at my BRAIN!!!!!!!!!!!!!  I cry alone and then kick my ass off the ground and keep moving.
  I have never written on one of these boards.  I read for  help to understand what my very highly regarded epilepsy doctor, does not tell me.  I am a happy going and on the run mommy of four.    So, I know I am doing great but why did I feel like I have become an IDOT ?  Sometimes, I wonder, If I am truely going mad.  I did truely think that before my epilepsy was TRUE BLUE REAL.  However, I still have these thoughts of..  Maybe, I am?????????
 
  Hoping for some english warmth,
 
                       Kelly Ann 

Another Day
Veteran Member


Date Joined Mar 2007
Total Posts : 1055
   Posted 8/31/2007 8:59 PM (GMT -7)   
Kelly Ann,
 
I was having similar problems last summer before I was diagnosed with epilepsy.  I was 55 at the time and was still trying to work, it was so frustrating.  The seizures that they captured during the four days I spent in the hospital wired and videoed 24-7 the entire time were myoclonic seizures.  I would try to talk and it was like my brain could not get the words to my mouth.  My mouth would also twitch and I would stutter.  I was also having the jerking of the extremities and I just did not have a clue what was going on. It was a nightmare for me.  Since then, I know that I have other types of seizures.
 
Do you know if you have had a proper diagnosis so that you are on the right medication?  Did they do an in-patient EEG?
 
It certainly sounds like you are under a lot of pressure right now.  I know you are having trouble explaining what is going on to your husband.  Have you thought about writing it down and explaining the whole situation to him that way, kind of like you did with us?  Is there another neurologist you can go to if this one is not willing to listen to you?  You need help and you need it soon.  Please make someone listen to you, even if you have to write it down.
 
I was afraid that I was in the early stages of dementia and voiced this to a friend who is always honest with me.  She told me that she was concerned about that also, but that they do have great medications for early dementia now and the earlier you catch it, the better.  As it turns out, it was the epilepsy.  So, I understand your fear.  I do not think you are going crazy.
 
Please know that you have people here who will always listen to you and we care about you.  Please check back in so I won't worry about you.  Most of us have email addresses if you just click on our names if you need to get in touch with us.
 
Take care!
 
Carla

 Epilepsy, asthma, GERD, depression, hypothyroidism


djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 8/31/2007 10:48 PM (GMT -7)   
Hi Kelly,
 
I think I would go back and see your doctor because something doesnt quite sound right. Perhaps its the wrong meds, perhaps there is something else to be dx etc... I understand that living in a foreign country does not help and that your husband get upset. Have you tried writing down some key phrases and having them translated? This might help you the next time you and your husband are arguing.
 
Let us know how you get on
 
Darren
Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
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Stillkelly
New Member


Date Joined Aug 2007
Total Posts : 8
   Posted 9/1/2007 12:52 PM (GMT -7)   
Thanks for the warm thoughts and responses. I am glad to hear, I might be normal. I have had all my testing , also in a epi centrum .( which is very hard to get in hear. Only extreme cause, are excepted.) I went totally stir crazy. Oh gosh, I only was out of site with a group of others for crafts. 3 weeks.. Blah) However there was still cameras there. ackkk. I even did an remarkable new study with 3 d images, magnatics and and an egg all in one. This is to help , the 24 hour of wires, bad glue and awake to the point you are jittering. I must say, I am proud to have been apart of this test. The results where offically released here in the begining of the year and I expect this to come into the future of our tests. Really, this test is amazing.!!!!!! A real improvement for our epilespy future.

My Netherlands language, reading And understanding, Acutally really makes people stand back and clap here.. My, accent is very typical of any person from another country. Horrible Horrible and no matter how much I have gone to school and repeat the words i say wrong. I even get upset if someone talks to me in English and ask friends to correct my wrong accent. My children, Only speak the language here and consider me English and that they are not.As, I said, I did not have any english speaking friends. I often have trouble with the grammatic and the spelling of my english words and sentences. The epilespsy really is harder are me ,as an Handicap. I have heard from the Americans, That I speak, More dutch than English. In other words, I speak as if I am trying to speak English as my second Language.(Dutch people are know for the knowledge of many languages and always try to speak them no matter what country , we visit. ) I am also known as a Netherland to the americans because of my dress and over all life. I must admit though, The Dutch people also call me an american. So, I am not sure where, I fit in.. LOL Can be hard All of my American friends married to netherland men have left years ago. I am the last, as I often sa. Gets lonenly but I have always been easy to adapt.
My doctor, she is one of the best here in Holland. But, I and my husband sometimes, wonder? ..... Health here is so different. I think I often am treated like I am an American that cries over, everything. Simply because, I have complained for years about the same symptoms. Years, and then I crased . Almot died. Gone, and when I was finally back. I told the medical ambulance that "kelly went boom! I will be fine!' I have passed out my whole life and didn't realize how horrible these attacks had become. Anyway, I don't like to talk about how badand how many times until it took before I was sent to the specialist (even though I was DX with Epi ! what I do know Is that I have scarring in my front temporal lobe. Futher, I do not understand Much ..

sorry, I talk so much.

Kelly Ann
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