NON Electrical Seizure Disorder

Hello, I have some sort of a seizure disorder that all of the DR's I have seen for 45 years have NO IDEA on what I have.  At age 4 or 5 my mother noticed that I would lose my balance and was kinda in a daze. I was taken to the GP and he said I had hypertension.  After a few months went by the symptoms persisted and I was taken to to the hospital and it was decided that I had peti mall seizures (Epilepsy) for years they put me on (excuse spelling) phenobarbital and other epilitic meds. Nothing seememd to work.  Here are my symptoms.  When I wake up in the morning (or anytime that I wake up , could be a afternoon nap) my eye turns in and I shake giving the appearance of a seizure. I loose my equalibrium and bright light seems to bother me. This happens EVERYDAY OF MY LIFE!This lasts form 45 minutes to 2 hrs depending on the day.  I always had to wake up an hour or 2 before the school bus would pick me up or later in life and hour or 2 before I had to be at work. I DO NOT pass out like most people that have Epilepsy. I always know my whereabouts and can answer when spoken too.  For years I saw Nuroligists and even went to Strong Memorial Hospital and went in for what they called LTM(long term monitoring)  where I was hooked up to EEG and had a video camera on me 24-7 to monitor any seizure activity.  My seizures are real people! They said that after reviewing my EEG that there was no electrical activity showing up when I seized.... I was hooked up for 5 or 6 day the first time and went in again and had the same test done again because the Nuroligist said the equipment was better and still after all the pain and suffering you go through NOTHING! ALL of the Dr's , specialists are baffled. I have been on every type of SEIZURE MED out there. NOTHING seems to work. Currently they have me on Tegretol.  After 29 years I finally lost my job because I always either took a vacation day if I was having a bad day or told them that I had migrains and after an hour or so would go back to work. But 3 years ago I had a really severe seizure where it lasted 7 hours, went to the hospital and still no help from the Medical prof.  I have applied for SSD and after 3 years still nothing! All I want is to be able to control what ever it is I have. I have always told the DR's that I can't be the only one out there with this type of seizures.  PLEASE , PLEASE, if you or anyone else has something even remotely similar I would appreciate any and all information. Again let me mention   I DO NOT BLACK OUT! I can carry on a conversation if I have to. They start out very mild and then get to where it feels like I get zapped with a bare electric cord. Sometimes my left side shakes more than right ,sometimes they both shake evenly.  I become very HOT and sweaty. The shaking happens roughly every 20-30 seconds and can usually lasts around 45-90 minutes ,but can last as long as Hours! Its not panic attacks nor pseudoseizures! This has controled my life for 45 years and I cannot and will not settle that I'am the only person out there with this disorder.  I would be so grateful if someone that had any idea or had something similar to this please contact me , thank you for listeneing! jim

Post Edited By Moderator (djdaz_1985) : 2/5/2008 2:48:21 PM (GMT-7)

Darren, Thanks for such a quick reply!   On your thoughts about my ears. I was checked out by ENT expert also. What puzzels me is that I have these evry single day of my life! Its not like I see some people post where they have been seizure free for 2 months or so. I do think that I'm having certain side effects to the Seroquel that I'm taking for sleep though. Since I have gotten older the seizures seem to have intensified ALOT! Again , it makes me stiffen right up and lasts anywhere from 10-30 seconds. All my muscles ache like someone beat me with a baseball bat and I feel completely drained afterwards. As I mentioned before they USUALLY only happened upon wake up ,but now seem to happen at any point of the day. Last week I had one after I had gone to the grocery store and was out front talking to an old neighbor when I had one. My neighbor noticed me shake alittle and asked if I was OK. I siad I needed a minute or two and then I had a stronger one and knew that I was in for one of my really bad sessions. She brought me home and was very concerned , I told her that I needed to get upstairs ,take some medication (Ativan) and close up my bedroom to make it as dark as possible. I told her I would call her to let her know that I was better. I including this because people that never witness a seizure before become very frightened when they see one occur. I hope and pray that someone on the internet reads my post and has soemthing that maybe similar to my situation.  thank you again and if you have any other ideas please post them .........jim

Unfortunately I have had CAT & MRI done. The Dr's said that after all the tests done it showed NO electrical discharge anywhere they looked. Let me explain in a little different way. MOST of  My seizures happen upon waking up as I have mentioned But I believe that the root of the problem is with my eye's. I can feel a twitching of my eye when the eye lid is closed and I have a finger placed on the lid. The eye when looked at by a specialist was said to have a "lazy eye" resulting in the eye turning in and staying that way until I basically am fully awake. Again I am very coherent and alert during the seizure, I just have trouble walking and I also get the feeling of someone touching me with a bare wire to make me stiffen up then relax for a minute abd then it starts all over again!  This happened this AM and when I was looking into the brighter light of the monitor I started having the seizures. I then had to go upstairs and take an Ativan and close up my bedroom to get it as dark as possible and ride it out. I time my seizures to see if there is anything at all new that I can tell the DR when I have my visit. This one lasted around 35 minutes from the time I took the Ativan till I could come back downstairs to write this reply. Again the eye was making this fluttering type of action when I put my finger on the lid. I did get the dry heaves ,but I attribute that to nerves when I have the seizures. Question: do most seizure patients have this eye problem too? I'm just hoping that someone see's my symptoms and sees a similarity somehow..... I really think that it maybe related to some sort of eye disease or in that area. I wish you could see my video tapes from the LTM session. I seized just like anyone else having the seizure BUT was fully awake , knew who the president was , what city I was in etc. I even had the wire inserted into my cheekbone so that it would be more sensitive to any type of recording while the test was going on. And anyone that has had that test knows the jaw pain from it. Please don't forget about me here ,this is the first forum that has actually wrote back with concern. I even sent emails to hospital officals on the larger west coast hospitals and still nothing.................jim

Hi Carla,  thank you too for replying. I went in twice for the LTM. First time was back in 1992 and the second time was 2003. Both times I got similar test results. As far as any type of light sensitivity, none other than when I first wake up. The light seems to make my right eye turn in when I first wake up and this may go on for up to 2 hrs like it did today. Tonight I'm lying on the couch with a heat pack on my neck from tensing up so much this AM when I had the seizure. I'm trying to think of anything else I can write down so that maybe it might jar someone's memory or maybe someone has heard of someone with similar symptoms.. Anybody????? Thank you, Jim

Affected as well:

          You are the FIRST PERSON that I have ever known to have symptoms similar to mine. I have had mine since the age of 4 though. (now 51) I would love to talk with you about this issue and if you sent me your email address I would really like to talk to you. I have been on almost every type of seizure medication that is out there and nothing has helped. The only thing I take now is Tegretol and they really don't thnik that it is doing any good taking it ,but when I try and go off of it after taking it for 25+ yrs I seem to have more of the seizures. I have them every morning upon waking and they last for about an hour or so until I'm wide awake. friday I awoke around 1:00am having them and they lasted 3 1/2 hrs.  I live alone and almost called the ambulance they were so bad. I took my usual dose of Ativan and finally fell asleep about 4:30am.....I was so wiped out that I never woke up till my daughter came home from school at 2:30 PM and was still out of it and my muscles just ached all over from the tensing up.

I pray daily that someone will see this and reply, you so far are the only one! 

Reason for edit:

I have taken your email address out for your own safety and protection. If you want other people to email you, you can add your email address to your profile through the CONTROL PANEL at the top of the screen. Darren

 

Post Edited By Moderator (djdaz_1985) : 1/8/2008 3:00:23 AM (GMT-7)

Hi Jim, thanks for writting me back. I agree, yes we have very similar symptoms, but mine just started out of the blue, not at an early age that I am aware of. I am 41 and find it so odd that this could just come so suddenly. The only explanation I can come up with is a drug reaction from the morphine and whatever they gave me the next day. I feel so lost and too dependent on others to help me do most things I use to be able to do. I have three children that I scare every time I have one and can never be left alone D/T my tongue going down the back of my throat will block my airway and untill my gag reflex gets involved I can breathe again. I can hold my breath sometimes up to 30/45sec. It really scares me and I have been told by a neurologist that if this continues I could very well stroke or cause an anurism in my brain.......aren't those great thoughts to think of during this. I'm scared, feel nausea all the time and tired, could sleep or lay around all day. I have lost 25 pounds in 5 months and yet I just lay or sit, no exersice at all because if I get exhausted from too much I will seizure. I can walk about 100ft...50 to and 50 back and then I am pooped and get shakey. I used to be very athletic before this, everyone teased me"Do you ever sit?" Now I can barely muster up enough energy to bath or try and tidy my house. I take clonazepam which is in the ativan family and live off gravol and advil for pain and nausea...no wonder I am tired but if I miss a dose of the clonazepam I seizure for sure. I received a callled today from a asstant service that may help with finacial problems and they denied me, said that there was no reason they felt from my doctors reports that I could not work.....isn't that a joke! We just can't seem to get a break anywhere and I feel it's all my fault ,but not because I can't stop these seizures.....when is anyone going to find out what is wrong with us. Where do you live, I live in Ontario, Canada?

hi thnks for the reply i live in the uk.

yeah i no with weight issues i have lost some weight although i am only slim anyways and i dont go out or do anything for fear that i may have a seizure and end up back in hospital again!!,

i too cant work, because of health and safety reasons not only will my employer not let me work until my seizures are under control, my dr has decided that i shouldnt work too, i now fear that i am going to end up with depression on top of the seizures (what fun).

the tiredness that you described i do get tired quite easily which is unusual for someone of my age  i am obviously more tired after i have had a seizure, when i was taking medication the clobazam and lamotragine for the seizures i practically slept my life away i was very rarely awake and i felt sick all the time and i couldnt eat but i am guessing that they were side effects due to the drugs.

if i have more than one seizure in a day it usually takes me a while to recover from my body aches all over for days, but if i only have one seizure then i usually recover in about a day.

these seizures are controlling my life and i cant do anything about it drs are questioning wether i have epilepsy now again because i dont fint the description of non-epileptic attack disorder. hopefully they will find out what is going on soon before i loose my job. i have been off sick now for nearly 4 months so my employer is getting a bit uptight about it.

well susan i agree with you, i think that amybe if one of us does eventually get some answers than maybe we can help each other. i too would like to chat more maybe we could go in the chat rooms on this site just a suggestion?

hi julia thanks for ur reply, well i have never had a tbi that i am aware of or my mum is aware of the only contributing factors that i can think ov are, viral meningitus although i dont think that this is known to cause seizures after the virus has cleared although i do no that seizures can be a symptom.

i used to take cyclosporin which is a immunosuppressant drug (sorry about the  spelling) for a skin disorder this drug is also given to transplant patients to stop rejection of new organs, seizures is a known side effects but i am not sure wether this is a delayed side effect or instant or both.

i was not unwell at the time of my seizures, infact i was really fit and healthy, i never changed lifestyle or diet i wasnt under any stress so i cannot think of anything that could have possibly triggered the seizures.

i did read somewhere that a chemical that is found in diet coke etc can cause seizures but not too sure how true this is anyone else read or heard of this?

no sorry not got any info although if you google aspartamine and seizures it should bring up something, i started drinking diet coke alot not long before my seizures started too, maybe its just a coincidence or maybe not.

 

Thanks Darren,I kinda wish you would change the name to "NON Electrical Seizure Disorder" though...Because thats what the DR's are calling it!       thanks jim

Homebound: Your welcome. We are all really friendly here and will guide you through gently. Once you get the hang of where to post and what the rules are, its easy!

Jims56: Your wish is my command! lol. I have changed the name on the thread for you. For future reference, if you want to do it yourself, you can simply edit the FIRST post in the thread (assuming it is yours) and change the name in the box at the top. You cannot do it on someone elses thread though. Only a moderator can do that.