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Non-epileptic seizures? Has anyone experienced this?

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Posted 2/21/2008 3:26 PM (GMT 0)
the doctor told me i have non-epiletic pseudo seizures related to a repressesed memory. they usually last anywere from 2 min to 5-6 min each. i dont bite my tongue when i have them. i do get an apprehension feeling a few seconds before i have them which gives me just enough time to call my husbands name. i get really hot during them and i jerk alot. i can hear whats going on around me but i cant talk or open my eyes. sometimes afteri have them, i have bad migraines all day and sometimes i just want to sleep. i also get seizures back-to-back and i want to sleep because my muscles hurt so much.

Posted 2/21/2008 4:00 PM (GMT 0)
Wow, this sounds just like the ones my son has. he is 29 yrs old and just strarted having seizures about 7 yrs ago. We had some neurolgists saying they were pseudo until we went to Baylor Neurologey and his neurologist told him no doctor should even mention pseudo seizures unless all test have been done. It so happens just in the last few months after my son spent 3 weeks in the hospital and a neurologist told him he was having pseudo seizures and then a neurologist at Baylor did some extensive test and found he had a very small mass in his frontal lobe and now we are exploring the options of brain surgery. Have you had a sleep study done or a T38 MRI or a EEG VIDEO MONITOR?

Terri
Posted 3/22/2008 9:27 PM (GMT 0)
I am in limbo with a diagnosis and I am feeling frustrated.

I began having what felt like (as described) simple partial seizures back in September '07. I would experience a unsettling deja vu feeling, then a sickening feeling in my stomach that would shoot up to the front of my head, my vision would then become peppery and my sense of present moment vs. nonsense memories would become confused. I would sometimes say things that were pure nonsense. Hear something that was not said. Afterwards I felt very tired, emotional, foggy, and uncoordinated.

As months progressed, I would get the same familiar beginning symptoms, only then I would lose conciousness. If I was sitting in a chair my head and arms would be slumped down to the right when I came to. If I was standing, I would fall to the floor, eyes open, fluttering, and expierence rythmic jerking (as I've been told). I've also fallen down the stairs during a "seizure". I remember nothing during the episode and very little leading up to the episode.

I've had two EEG's, an MRI, Bloodwork and an EKG - all seem to show normal. I was given an anti-anxiety drug, but seizures haven't been ruled out. It is very upsetting not knowing what is happening. It has been suggested that perhaps it is anxiety/atypical panic attack, atypical migraine, low blood pressure.
Posted 3/27/2008 1:32 PM (GMT 0)
Thank you for the response Gracie'sMom!

I have a neurology appointment on April 21st and plan to ask for a 48hr EEG. My last 2 EEG's showed nothing abnormal - they were about 20 minutes in length. My MRI was also clear.

I experienced another "episode" yesterday while laying down almost asleep. I did not lose conciousness, but was very confused. I was laying down when I was flooded with the yucky stomach feeling, the familiar deja vu or deja vecu, the nonsense images that flee quicker than I can figure out what they are, and the exhaustion/confusion afterwards. The actual episode is maybe 1 minute at most, but the mild confusion seems to last a few hours.

Today I am left with that lingering feeling of something not feeling quite right.

I was given an anti-anxiety medication just over a month ago (because that is what the my primary Dr. felt these "spells" were, anxiety) and it has not stopped the "episodes". I am not sure what to think at this point.

I can tell you that I am tired of feeling this way and constantly questioning my sanity.
Posted 4/1/2008 9:09 PM (GMT 0)

well i no exactly how you all feel it is so frustrating i no. i have been waiting for a diagnosis for the last 18 months i am going in hospital again this month this time for a veeg 2 whole weeks in hospital but i no its got to be done and this time i should get some answers.

i have seen so many neuroogists and also a cardiologist, got an old ecg tracing back today with the report, it says something about p waves being taller than 2.5 mm suggestive of right atrial hypertrophy. not sure if this has anything to do with my seizures and my gp seems unsure too .  

Posted 9/4/2008 1:39 AM (GMT 0)

eyes  Hi my daughter is 16 years old on July the 17th she was rushed to hospital after her first seizure, I wasnt with her when it happen so I didnt see it.  They let her go home that same night, the next day she had another I seen it rushed her to the hospital again by time I got there it was over, they just said there was nothing they could do for them just put her on medicane. The next day she had another so I took her to another hospital we were in there for 5 days they did a MRI, EEG and a spinal tap they didnt find anything wrong, but the neurologist said she was sure it was epilepsy put her on keppra and sent us home. Over the next few days about 5 she had seizures every day. The doctor told us to come back to the hospital were she told us that she didnt have epilepsy she was having (pseudoseizures/conversion disorder) we were shock. She then told us we needed to see a mental health person, so we have been doing that is hasn't seem to help much. She is still having them she gets a real bad headache and then she will have 1 or several they last from 2 mints. to 20 mints. also she is having problems with her legs after them sometimes she cant walk good for hours sometimes days. She isnt able to go to school because she is having so many we are doing home school for now.

Is there anyone out there who is having the same thing or having something close to it today is

September the 3rd so it been 1 month and almost 2 weeks so any coments will be helpful. idea

Posted 9/5/2008 10:24 AM (GMT 0)
Hi bb

I have moved your post into its own thread Called "16yr old daughter with epilepsy...Advice needed". You should get more responses that way.

Darren

*All members: Please forward any comments on bb's post to the new thread and not this one*
Posted 9/5/2008 4:15 PM (GMT 0)
Have any of you ever heard of Dystonia ? Pull it up! It my be you answer to your seizures. It answered my prayers. cuddlbug
Posted 9/6/2008 1:07 AM (GMT 0)
:-)  Thanks Darren hope someone can help.
Posted 9/28/2008 6:17 AM (GMT 0)
hi, my name is ash.. im 17 and at the start of the this year i started having seizures. i had all the test done and was hospitalised for 2 weeks. docs put them down to being sudo seizures and refered me to a social worker. ive now been seeing this social worker for over 5 months. my seizures havent stopped i can have up to 7 or more in one hit. ive been in atleast 20 ambulances and they could make an express lane for me at the hospital im there that often. but all docs seem to do is check im ok and send me on my way. i personally think they have got it wrong. anyone have any suggestions on what els i can do.

Posted 10/2/2008 12:10 PM (GMT 0)
Hiya,

Have you seen a neurologist? If not, then I would push to see a neuro and have an EEG done or some other diagnostic test for epilepsy. I agree with you that there is something not right when you have seizures that frequently. Im not saying its epilepsy but there is something there to be found im sure.

Darren
Posted 10/30/2008 11:40 AM (GMT 0)
to Concerned mamma,
what meds is your daughter taking for her seizures?
Posted 11/21/2008 1:17 PM (GMT 0)

Dear concerned momma,

 

I'm new to this my mom looked on here and told me about it.

 

My daughter is 16 years old and everything you have said about your 17 year old is the exact same as my daughter. She was at the hospital for tests for a week. I still don't have all the results back yet but what I have back so far is the same. Its hard to believe that stress can cause so much trouble and scare you like you have never been scared before. She is my baby and it is so hard to see them out of it like that. It even parazyed her right leg she is just now getting off crutches. I feel for all parents and kids going through this I think it is one of the hardest things I have ever delt with. My daughter is on Keppra which I guess from what I hear is one of the best medicines (less side effects). I wish the best for everyone that is going through this because you are afraid to let your child out of your sight for fear she will have another one. It makes it a little easier to know my family isn't the only one going through this and I have someone to talk to about it.

 

Tweetycat

Posted 11/24/2008 3:17 PM (GMT 0)
I'm very confused about this whole seizure thing. My daughter spent a week in the hospital for tests but they never took her off her meds to see if she would have a seizure. The other day we were at a store which had lights that were flashing and she had to put her sunglasses on because she started to feel funny in her head like she normally does when she is getting ready to have a seizure. But yet the doctors are saying hers are stress related seizures. My aunt which is a nurse and is very intellegent said none of the answers I am getting are making since. She really should have been a doctor but feels she would do more good being a nurse. So if she is questioning this I feel I should also. Yes we have had some very stressful times here lately in the last year mostly but still doesn't explain the flashing lights putting her into one. Does anyone out there have the same questions I do and also does anyone out there have the same problem my daughter is having. It makes her feel like she is crazy and that really hurts even though I have told her she isn't crazy in anyway shape or form. Looking to see if anyone can help lead me in the right direction and if anyone else is getting the same answers and feeling like the doctor has just gave up because they say they are stress related deal with them. Also at the same time in one of my daughters test she has a spot on what they call T3 area so how is that stress related. Please anyone with ideas of what to do next.

Thank you and glad to have other people to talk to about this that understand.

Tweetycat

Posted 12/31/2008 10:22 PM (GMT 0)
  Concerned momma, I am 25 years old and have experienced seizures like the Type 1 you described since I was 15. I thought I was alone; no one has ever had the same symptoms as me. I never sought diagnosis or treatment. I have learned to live with it, somewhat. Sometimes it occurs just as I am getting out of the shower. Most of the time though, it occurs over and over again all day for about three days or more. I can't see, I can hear what people are saying to me, but I cannot respond. Sometimes I forget where I am, or even who I am. But only for about a minute. It is really scary sometimes. Especially when I am driving. I'll be driving down the road and all of a sudden I won't know where I am. Even on roads I've traveled my entire life. In a way, I have learned to control it with mind over matter. Sounds silly, but when I feel one coming on I fight it. I grab a hold of the nearest thing to me and I hold myself up, it is really hard with the twitching and everything, but after a while they weren't as severe. I even tell myself to ignore it. Sounds crazy, talking to yourself in your head while it is happening, but it does work. Fight it. I believe them to be brought on by stress. Thinking back, when my seizures started, was after mom told me about something my father had done to me when I was 10. Either this is my body's natural response to a memory trying to resurface, or it is my mind trying to make me not remember, I'm not sure. I believe it is psychological. I had a horrible childhood, but I do not have a lot of memories of it. Many people have told me it is your personalities trying to switch so you can deal with your mental stress. I would hope I do not have split personalities, but trauma as a child can cause this, I've heard. Children have amazing natural coping skills, it's when they are teens and adults the memories start to flood back, that is when one should worry about the effects a traumatic experience can have on a human being.   Don't give up, keep going. The world of medicine is growing and gaining new knowledge every day.
Posted 1/2/2009 2:52 AM (GMT 0)
Just another thought that occured to me today.... It could be caused by iron deficiency. ?
Posted 10/13/2009 9:42 PM (GMT 0)
Hi

 I am new to this post. I was trying to fing something on sudo seisures and came accross this web sight. I read all of the letters and was glad that I was not alone. My nineteen yr old granddaughter was diagnosed with non epileptic seisures about a year and half ago. She has cerable palsy and epilepsy, but then these non epileptic seisures started. During her last few months in her senior year, she had almost daily "events" at school. Each time the school called 911, where she was taken to the ER. Usually she would come out of them by the time she got there. She has had many tests done and was hospitalized. My daughter and I tryed to educate the school about these type of seisures, but they could not understand. We are so frustrated and concerened about not  nly her wellfare, but about her future. She cannot go to school. She cannot get a job. She will never drive. Somedays I fell terribly hopeless. She is seeing a therapist, but I don't know if he can help. I know that my granddaughter is terribly depressed, because very few can understand her condition. She has no friends, and very little activity. If someone out there can help, please let me know.

Thank You,

shakehead Jeri

Posted 10/15/2009 8:37 PM (GMT 0)
Concerned mama Hi I just joined a couple of days ago, and my first question was has anyone heard of pseudoseizures which I found out there also called non-epelectic seizures. Im 40 and mine started in 2004 I had EEG the whole nine yard went to the best hospital in my area dealing with seizures and the told me they are not real there brung on by stress!!! Well I didn't believe that I was making myself have these things.

They are real they act out like real seizures I cant remember what happens when I come to, my eyes roll back my muscles are soo stiff that after them sometimes I cant walk for a minute. Im on lexapro and a couple more meds and they dont seem to be working. Im so sorry your daughter has to go through this, because I know the felling. To anyone of U your right your life changes and your consumed by these attacks.

I know it's hard to believe there not epele. I still don't believe it but I my test say nothing is wrong. Im so glad I found this site I wish I would of found it 5 yrs ago. I hope everything goes well with your daughter, my pychristist also has me on 200mg seroquel, and 0.05mg of clonzepam, and I still have these attacks good luck



NES, depression, anxiety
Posted 10/31/2009 6:46 PM (GMT 0)
Hi I also have a 17 years old daughter who has seizures.  She is currently on a seizure med called Keppra.  She currently satrted to have then when she was 15 a freshman in high school.  It was a everyday thing going to the ER department  at Children .  Then finally the did all the testing that they need to do and there was some abnormal brain funtion.  They classified them as sudo seizure on doctor said it can be brought on by stress and other related issues.  So foe a yaer and a half so had no seizure at all then Sept of this years she had one and was taken to the hospital, then recent she just had another one .  So I made the appt. that I needed to make to see what I can do , but as a parent it is furstrating, because you want to try to fix it and you can't.  Just needed to find someone else to talk to.  A loving parent
Posted 11/1/2009 10:38 AM (GMT 0)

I to have NES's. Mine were debilitating, and I eventually was treated with ECT (Electro-convulsive Therapy) It help TREMENDOUSLY. I went from several "grand-ma like" seizures lasting 12 or more hours a week, to one in about 9 months. Its not a common treatment though, and I did suffer memory loss. If they are true NES, anti-convulsants DO NOT HELP. Sometiems though, Valuim does limit the longevity and severness.

Do not let doctors tell you she is faking though. Sometimes as soon as they hear or even think the word "pseudo" they think "fake".

I also could hear during part of my seizure. It is a very frustrating experience. I suggest crarring sometime in her purse that explains her seizures are Non Epileptic so they don't load her with meds that dont help. One time i had a seizure in the mall by myself and nobody new what to do, and once in an ambulance they drilled a hole in my leg bone and put an IV in called an IO so they could rush the anti-convulants in and they did no good.

if you see a Psychologist or Psyciatrist, make sure you get one that has experience with NES. If you live close to TN there is a Dr. Rice and Dr. Varma that work with St. Francis Hospital in Memphis TN. ( I like Dr. Varma better).

I really hope these things go away completely for your daughter. I know that they are hell to live with.

Best to you and feel free to ask any questions.

Ang

Posted 11/1/2009 11:08 AM (GMT 0)
I just replied, but two things that stump me and my doctors is that 1. I do not respond to stimuli. I wake up feeling like my sternum is broken b/c they do the sternum rub SOO hard to try and get a response. I have also woken to bruises on my breast from nurses twisting my nipple to see if I respond to the pain. One bad thing is sometimes I feel the pain, but can't respond or move.
2. My seizures last for HOURS. I'm talking 12, up to 20 hours of constant rigidness, shaking, etc. On a few occations they just have to paralyze and intubate just so I don't cause muscle damage and to slow my heart rate.
I haven't heard of anyone having seizures, NES or Epiletic lasting so long.
Posted 11/8/2009 6:44 AM (GMT 0)
Hi, i'm not usually on this forum i tend to stay on the lyme forum but i just wanted to ask some of you with non epileptic seizures- do you have any other curious symptoms? If there are any other noticeable symptoms you might want to do some investigating into other illnesses with "unexplainable" seizures- and i'm not talking about mental illnesses. Hop over to the lyme forum if you get a chance and see if some of your other health conditions pop up there. Just a thought- and lyme is by no means the only other explanation- i'm sure there are other illnesses as well, but its worth investigating to see what other explanations there are.
Posted 12/7/2009 6:04 PM (GMT 0)
hi all I was just looking around I I found this site WOW Have you ever thought that medication can cause these seizures......I took a half of a dose of rx meds and dont remember anything for 6 days .....having seizures and everything......they gave me meds to stop them....I was in ICU for days eeg'g said that they were PSUDO seizures my doc told me I faked them all....went to a psychaiatrist and they told me that I had all my ducks lined up in a row....the neuro said that they were real and caused by meds by the way the seizures did not stop until they stopped the meds to stop the seizures..... NICE HUH
Posted 1/27/2010 7:59 AM (GMT 0)
Hello, for every one concerned about pseudoseizures, I have had seizures for about 25 years now and I have been going to a neurologist the whole time and just recently I got diagnosed with pseudoseizures also and my doctor explain to me that when a person who has pseudoseizures is going through stress your body is trying to find a way to release all that stress and since your body can only handle so much stress then it just goes into a seizure as a way of escaping from all the stress. I hope this helps every one concerned on pseudoseizures and hear is a very good website on info for pseudoseizures   http://www.growingstrong.org/epilepsy/psych.html check it out I think it will help you all understand pseudoseizures alot better, I know cause it helped me too.

                                                                                                                      yeah

Post Edited (mi-nena) : 1/27/2010 1:02:02 AM (GMT-7)

Posted 2/17/2010 11:49 AM (GMT 0)
I suffer from sudo seizures and at first thought it meant I was in control of these fits I now know that is not the case and mine are very much related to stress. It is a shame there is not more information out there about sudo seizures as most people have never heard of them and because of this I don't feel suffers are taken seriously. I have now had these fits for over 2yrs but only recently got a name to put to them after I had every test possible even the doctors are relucant to answer questions. Can anyone help with this one - if I had my stress/depression under control would these fits just disappear?

 

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