Epileptic and non-epileptic seizures?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Elizabethy1
New Member


Date Joined Feb 2014
Total Posts : 3
   Posted 2/13/2014 7:19 AM (GMT -6)   
Hi,
I think I'm experiencing something similar to what is being described by some members on here. I'm 20 and apart from lung surgery last august have no medical history. In November, whilst at Uni I had 3 seizures and was taken into hospital by ambulance. In a&e they practically laughed it off, told me I was stressed and sent me home. Nothing happened again until January, when I collapsed having seizures at my local GP, and was rushed straight into resus where they spent over 4 hours trying to stop the 20 odd seizures happening! After this I was kept in hospital for 2 weeks and tests, and eventually discharged with a diagnosis of epilepsy, with abnormal electrical activity on the EEG. So after deferring my place at a top university, and coming to terms with having to hand back my driving licence etc; I started to feel unwell again. I was vomiting and having tiny shaking episodes, and to be on the safe side my mum phoned an ambulance. I was confused, tired and unwell, however the first doctor we saw said I had recovered and could go home.
I was then moved to a different part of a&e expecting to be discharged when the neurology team turned up. He asked me "what do you think is going on here?"
And interrupted me before I'd finished to drool out some patronising speech about how he thought I was stressed, without knowing it. And although I felt fine, happy, relaxed, I was in fact likely to be harbouring some suppressed doom which was causing these episodes. Ridiculous man. So. What about the abnormal EEG? He said that about 4% of people show abnormal brain activity but it does not necessarily make them epileptic! and that the seizures observed didn't look epileptic.
What he told me was almost the polar opposite of what I'd been told a week ago in hospital.

I am now at home, (still on keppra, which the dr recommended I stayed on "just in case" ) but feeling confused, and still pretty exhausted. I almost feel like the doctor wanted me to tell him that I was stressed/depressed because then I'd fit nicely into his category of "non-epileptic seizures".

Sorry for such a long post. Has anyone experienced anything like this? A mixture of epileptic and non-epileptic/being messed around with diagnosis?

Elizabeth x

Tazmusic
New Member


Date Joined Feb 2014
Total Posts : 1
   Posted 2/15/2014 8:13 AM (GMT -6)   
My daughter has been diagnosed with both 'maybe.' She has an appointment with a new neurologist, but I believe it is difficult for doctors to determine which medication to keep her on and which to take away. She has several chronic conditions...chrohns, interstitial cystitis, etc.

My sarcasm follows in regards to some doctors: everyone knows if things were perfect, we would all be members of some wellness group. But when you have some medical conditions, whether or not caused by stress...well my goodness ... You must be seeking attention or narcotics. This seems to be the first 'game' she has to play with nearly every new physician.

A patient with these kinds of chronic issues do have other things that affect their wellness. Makes it hard for doctors to even have time for her. Not very many will even take you on as a respected patient.

Elizabethy1
New Member


Date Joined Feb 2014
Total Posts : 3
   Posted 2/15/2014 7:49 PM (GMT -6)   
Well thanks Tazmusic... I really hope they start taking her seriously.... It must be horrible to have several ongoing illnesses as well. I suppose I'm better off in a sense that this has happened on top of lung surgery ( which I should recover from) and nothing more long term.

Which tests has she had re. epilepsy ?

rob_dj
New Member


Date Joined Apr 2014
Total Posts : 2
   Posted 4/18/2014 10:58 PM (GMT -6)   
I'm 49 and have been diagnosed with partial complex seizures since I was 11. I've been seen my numerous dr.'s over the years, been on a large number of medications, and also have had 3 VNS implants. They meds and stimulator help to a degree but mine have never been completely controlled. The dr I begin seeing last year is now saying that I have both epileptic and non epileptic seizures. He did a video EEG for 5 days which I had three seizures that nurses witnessed. I have no memory of having them. He says that they are pyscho somatic and that they are not epileptic in nature because he could not see them on EEG. No other dr has said mine were phsycho somatic in nature. He says I definitely have epilepsy caused by cortical dysplasia. I have been told that sometimes EEG monitors can miss some seizure activity. But this dr continues with that I have both. How are we suppose to know the difference? I'm having the same seizures I've had all along.

ramge
New Member


Date Joined May 2014
Total Posts : 4
   Posted 5/10/2014 8:08 PM (GMT -6)   
Hello. I just wanted to say I understand the dr.s diagnosis of you as having Non-epileptic seizures. I too have had a charity hospital dr. diagnosis me as having Non-epileptic seizures. I started to have grand mal seizures only while I am sleeping starting 6 years ago in 2009. I was taken to the hospital and had a CT Scan done that came back negative. They sent me home. 2 months later, I had 2 grand mal seizures while sleeping, 2 hrs. apart. I was taken to the hospital again. After the 3rd seizure, the hospital diagnosed me as having a seizure disorder. I was put on Dilantin 100 mg 2xaday and told to follow up with my regular dr. The dr. continued the seizure med. and signed me up to have an MRI and EEG done. Both tests came back negative showing no seizure activity. Later the Dilantin was changed to Phenytoin 100 mg 2xaday, then another dr. changed it to Tegretol XR 1 tab every 12 hours. All three seizure meds stopped the grand mal seizures, but each pill made me sick and nauseated and I was throwing up almost every day. After a year and a half of taking the seizure med. Phenytoin, I was also having memory problems and losing my memory. I could not live like that, so I slowly weaned myself off the seizure med of Phenytoin over a 3 month period. Plus I lost my job and health insurance and could not afford the seizure meds. anymore. Right now I still have my grand mal seizures only while sleeping. I have 1 maybe 2 a month. My boyfriend has witnessed most of my seizures and has told me and my dr.s the symptoms I have from the seizures. He has told me I have my seizures only while sleeping. He has woken up at night, turns on the light and sees my face and lips turning blue and I stop breathing. He finally saw me have a seizure from the start of it. He said my whole body got tight and rigid, then I started to convulse. My face and lips were blue and I stopped breathing. My eyes were wide open and blinking rapidly like I was being electrocuted. The black pupils were really big. When I come out of the seizure I am confused and very tired. It takes a half hour to an hour for me to become fully coherent. After the seizure I have to change my clothes. I have a terrible headache and I am very nauseated. For the rest of the day I am tired and it takes me the whole day to recuperate from the seizure. Last year I had a dr. appt. with that charity hospital dr. and he told me he now thinks my seizures are Non-epileptic seizures. I went home after the dr. appt. and looked up info. on that seizure type and I can honestly say that dr. is WRONG in his diagnosis. I have my seizures only while I am sleeping. Non-epileptic seizures can happen when the person is awake or asleep and are caused by some emotional problem like childhood abuse. I never was abused, physically or sexually during my childhood. My seizures stopped when I took the 3 seizure meds., plus all 3 seizure meds are prescribed for grand mal seizures. Non-epileptic seizures are NOT stopped by seizure meds. When I have my seizures my whole body gets rigid and I start convulsing. My eyes are wide open and blinking rapidly. I bite the right side of my tongue most times. I am confused when I come out of seizure and I have a bad headache and I am very nauseated as well. When people have Non-epileptic seizures they move their head from side to side. They laugh or cry during the seizure. Their eyes are tightly closed. They have the seizures around people and most people when they come out of the the seizures, they snap out of it quickly and recover quickly. They also bite the tip of their tongue. Plus I know my seizures are real grand mal seizures because one time at work, there was an odd shaped light that looked like an upside down bell. This light was blinking like it was going out. I walked under the light and all of a sudden I felt pressure on the top of my head. It did not feel right. Also I have auras many times before my seizures. Non-epileptic seizures do not have auras before the seizures. What do other people think? Thank you.

adina46
New Member


Date Joined Jul 2014
Total Posts : 1
   Posted 7/7/2014 7:46 AM (GMT -6)   
Pacat ca nu se poate vorbi si in limba romana

AngMichelle
Veteran Member


Date Joined Apr 2006
Total Posts : 932
   Posted 8/3/2014 12:56 PM (GMT -6)   
i have been told I have Psychogenic Non-epileptic seizures, been told I have mixed seizures, and some dr's say I"m just faking the seizures(this is infuriating).
I present with a horrible rigidness, my arms curl up, I shake sometimes like a grand map, sometimes just one side, and sometimes absence like apperance. My eyes roll in the back of my head, or shake side to side fast. It can be in my sleep, awake, alone, in public, no pattern. The only thing is they never show on EEG. only muscle movement shows up.
twice after a seizure I've had standby's to CPR saying I wasn't breathing or have a pulse, but once in ER they say I'm fine, and send me home.
sometimes I will have seizures back to back for HOURS, but some dr's let this continue hour after hour without any medical intervention, just watch me. A few times a dr will sedate and intubate bc he said no one should be doing that that long.
they say they prove mine are NES bc i have no brain damage after hours of seizing and my blood work is usually normal.
I'm ok witht he Non ep dx, but its the being told I"m faking, or if I just manage my stress they will go away, or that I have controll over it.
I have NO clue when I'm seizing, I lose control of my bladder, I have caused injury(which most people who fake for have PNES do not) like shoulder dislocations, my heart races, I sweat alot, and feel like I've sprinted a marathon with no training. Its miserable.
The hardest thing is how dr's treat me. Like I'm crazy. I have had some nurser and dr's pinch me so hard they leave bruises, trying to prove my inflicting pain trying to get me to respond that i'm faking, I've had saline squirted with extreme pressure in my eyes, alcohol pad tips put on my eyeballs, bruses left of feet trying to inflict pain and text reflexes, had nurses twist my nipples so hard i'm left with bruises, had sternum rubs done so hard I'm brusied and in pain for days.
I don't understand this "abuse" to prove i'm faking especially bc I never respond to their torture during the seizures, just feel it after.

I have been told i have something called conversion disorder. That its not something i can controll but still not originated as medical but mental illness.

its all so hard and scary. I'm so afraid one day they will let me seize too long, or not do anything I and I suffer permanent damage one day. Its at the point where if I'm home, we don't even seek medical help bc they treat me so badly. They just place me in a room, put the rails up, and let me seize...hours at a time sometimes(each seizure last only a few minutes but will happen back to back).

I don't have any advice but know your not alone, and always stand up for yourself. Demand to be treated with respect and follow your instincts. seek a 2,3,4th opinion if you need. See an epilepsy specialist. ER dr's don't seem to know anything about non-ep seizures.

and if the meds stopped your seizures, than the chances of each seizure being non-ep is low, may you have mixed too....maybe try to find one you can tolerate well.
29 female
Dx's: Depression/anxiety, Non-Epileptic Seizures, repeat Rt. shoulder dislocations, NERVE damage after if IV infiltration with chemical burn in left arm,endo &ovarian cyst. I could go on but will spare you all

Meds: Opana 10mg(waitng on PA), oxycodone 5mg bt, neurontin 100mg, clonzepam 1mg PRN
doTERRA essential oils-Frankinsense, Lavender, Balance,peppermint, Clary sage, and many other

AngMichelle
Veteran Member


Date Joined Apr 2006
Total Posts : 932
   Posted 8/3/2014 12:56 PM (GMT -6)   
i have been told I have Psychogenic Non-epileptic seizures, been told I have mixed seizures, and some dr's say I"m just faking the seizures(this is infuriating).
I present with a horrible rigidness, my arms curl up, I shake sometimes like a grand map, sometimes just one side, and sometimes absence like apperance. My eyes roll in the back of my head, or shake side to side fast. It can be in my sleep, awake, alone, in public, no pattern. The only thing is they never show on EEG. only muscle movement shows up.
twice after a seizure I've had standby's to CPR saying I wasn't breathing or have a pulse, but once in ER they say I'm fine, and send me home.
sometimes I will have seizures back to back for HOURS, but some dr's let this continue hour after hour without any medical intervention, just watch me. A few times a dr will sedate and intubate bc he said no one should be doing that that long.
they say they prove mine are NES bc i have no brain damage after hours of seizing and my blood work is usually normal.
I'm ok witht he Non ep dx, but its the being told I"m faking, or if I just manage my stress they will go away, or that I have controll over it.
I have NO clue when I'm seizing, I lose control of my bladder, I have caused injury(which most people who fake for have PNES do not) like shoulder dislocations, my heart races, I sweat alot, and feel like I've sprinted a marathon with no training. Its miserable.
The hardest thing is how dr's treat me. Like I'm crazy. I have had some nurser and dr's pinch me so hard they leave bruises, trying to prove my inflicting pain trying to get me to respond that i'm faking, I've had saline squirted with extreme pressure in my eyes, alcohol pad tips put on my eyeballs, bruses left of feet trying to inflict pain and text reflexes, had nurses twist my nipples so hard i'm left with bruises, had sternum rubs done so hard I'm brusied and in pain for days.
I don't understand this "abuse" to prove i'm faking especially bc I never respond to their torture during the seizures, just feel it after.

I have been told i have something called conversion disorder. That its not something i can controll but still not originated as medical but mental illness.

its all so hard and scary. I'm so afraid one day they will let me seize too long, or not do anything I and I suffer permanent damage one day. Its at the point where if I'm home, we don't even seek medical help bc they treat me so badly. They just place me in a room, put the rails up, and let me seize...hours at a time sometimes(each seizure last only a few minutes but will happen back to back).

I don't have any advice but know your not alone, and always stand up for yourself. Demand to be treated with respect and follow your instincts. seek a 2,3,4th opinion if you need. See an epilepsy specialist. ER dr's don't seem to know anything about non-ep seizures.

and if the meds stopped your seizures, than the chances of each seizure being non-ep is low, may you have mixed too....maybe try to find one you can tolerate well.
29 female
Dx's: Depression/anxiety, Non-Epileptic Seizures, repeat Rt. shoulder dislocations, NERVE damage after if IV infiltration with chemical burn in left arm,endo &ovarian cyst. I could go on but will spare you all

Meds: Opana 10mg(waitng on PA), oxycodone 5mg bt, neurontin 100mg, clonzepam 1mg PRN
doTERRA essential oils-Frankinsense, Lavender, Balance,peppermint, Clary sage, and many other

logy
New Member


Date Joined Oct 2014
Total Posts : 1
   Posted 10/27/2014 5:55 PM (GMT -6)   
I have Non-Epileptic Seizures and I do have auras before I have a seizure and my eyes are open and my head dose not move side to side and I am alone most of the time when I have them. Don't really care for the stereo type about people with PNES. The seizures I have hurt like hell and I have had 8 Grand Mal seizures. Thank You
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, October 18, 2017 12:39 PM (GMT -6)
There are a total of 2,883,755 posts in 316,421 threads.
View Active Threads


Who's Online
This forum has 157553 registered members. Please welcome our newest member, Jones_bond.
445 Guest(s), 23 Registered Member(s) are currently online.  Details
alephnull, countingstarsx, JayMot, notsosicklygirl, carattop, Lapis_29, Witsend415, Casa11, Radi, island time, Pirouette, JNF, Turboz, chikinnooodle, 1000Daisies, getting by, Lynnwood, NKinney, kmclark1, Tim Tam, Jones_bond, Vgrantn, blueflame


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer