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Pseudo Seizures Taking Over
Sun, 07/01/2007 - 18:40I & my wife, Millie, have been trying to gain information in Pseudo Seizures. It seems to be a forgotten type of Epilepsy.
I was diagnosed with "True" Epileptic Seizures when I was 3 months old. My growing up years was a very horrid experience for me, let alone anyone.
It was not until June of 2005 was I diagnosed as having Pseudo Seizures. I had gone to a University Hospital for some help & after 4 days of seizing (15 in total), was told they were Pseudo Seizures. I was also told that I never was an Epileptic, Never Had Been, & Don't Even Consider Being One!!
I had explained my Right Occipital Lobectomy, VNS, & a Seizure Response Dogs to Non-Epileptics, HUH??
Not!! I was told to return my dog and stop using all of these as a crutch. He notified my neuro and said to start titrating me off my AED's.
By Dec '05, I had a 4 1/2 hour GM Seizure and induced into a coma at the hospital 3xs. and ventilated that many as well.
When my neuro notified this so called "specialist", he at first did not accept any responsibilty for this action. After my 2nd trip in '06, he acknowledged his error in saying I was not a "True Epileptic". He asked me to return for re evaluation.
Well, my whole left side is messed up. I told him he screwed up my left, he is not getting a second chance to do my right.
So, now to my question: Is anyone aware of sites, Groups, & Chats that Millie & I can access for support on Pseudo Seizures? We are having trouble finding anything online with "New" Info, we are not aware of.
Please email Me, Eric @ rangers_rainbow@msn.com or
My Wife, Millie @ gimpynan@msn.com
Millie is in need of Support from others i.e.(Family Members or Caregivers). Millie needs response in Large text. For Millie is visually impaired. I am really, really concerned for her mental state. I do not know where I would be today if she was not part of my life. We will be married 16 yrs this month.
I am 45 yrs old.
Thank you for all your time.
Eric
Comments
Re: Pseudo Seizures Taking Over
Submitted by shelly maire on Mon, 2007-07-02 - 04:08
Hi Eric, I have been diagnosed with both puesdoseizures and epileptic seizures with one nuerologist but after having seizures so bad that I couldn't function a day with out having at least 4-5 grand mal seizures a day and I don't know how many other seizures because I would be doing something in the kitchen and my boys would be laughing at me and standing there holding me when I came to telling me to go lay down because I just had a seizure. I was never allowed to be left home alone because I had fallen and hit my head to many times and hurt myself to the point that I had to go to the ER. There were times that my seizures had gone into cluster seizures and when my husband took me to the ER after I had seized on and off for 30-45 minutes he would have to tell the doctors what to do because they didn't believe him when he told them what had been happening. Finally I went to Mass General and had testing and was approved for surgery. So in April I had a left temporal lobectomy. But I am still experiencing some minor seizures from what my husband is telling me. I don't remember having them but he says that they are nothing at all like they use to be so hopefully once my brain heals they will stop. But it took me a lot of insistence on my own account that it was something more in my mind going on then just mental issue because I was in counseling and had followed all of those issues and nothing was helping them they were just getting worse. Hope it helps. Feel free to look at my home page. to get more info on me.
HI, Yes there is psudo
Submitted by peppermintpatty on Mon, 2007-07-02 - 01:38
HI, Yes there is psudo siesures.I for one didn't believe it when told that I had them...in fact I got angry and upset and said why would I fake a siesure when I hate having them in the first place?!The nuro said You are not faking them per say but your body is telling you that is how it knows how to handle all the stress and other stuff that you might not be talking about,since you have had siesures all your life.I forgot to tell you I have had epilepsy since I was 2 and I am now 48. Well he set me up with a epilepsy psycolagist and she helped me along with my husband to get into the garbage and worries and past junk that I have kept inside of me.during that time I started also seeing the differance between the psudo siesures and the real epilepsy.so when the psudo siesure would start up I could start doing a realaxing exercizing breathing and thought prossess that sometimes it wouldn't even get to far into it.Another thing that helps tremendously is writing a journal...whether it is about your life or daily things or poams it helps to write stuff down instead of keeping it all inside ya. What ever you do do not believe anyone when they say they are not as dangerous as epilepsy! they can be as dangerous because it is still your mind that is causing them to happen it just isn't a short in the brain.they can mimic pretty good but in time you will be able to recogniz the real ones to the psudo ones and then from there it gets to the point where you most likely will get rid of those...I have not had one for 6 months now and I was having them 1 or 2 a day.my ordinary siesures are still the same old 0 to 4 a day...seems nothing helps those lol oh well some day maybe.Wish you luck.And let me know how it goes. peppermintpatti