Hello everyone,im new here and this is my story

[kostareyna]

My name is Kosta,

First seizure happend when i was 15,i drank alot with friends than slept for like 2 hourse,next day my life turned upside down.The doctor thinks i lost consciencness but i think i just fell asleep because i was in shock.I remember the clustered myoclonic jerks like they happend yestorday,i even stode up after the first cluster then fell and started jerking again while crying not knowing what is happening to me,i still don't agree i lost consciencness since usually you lose it before the jerks not after.

I was in the hospital,the ct and eeg scans came out fine.My neurologist diagnosed me with juvenile myoclonic epilepsy and putted my on valporic acid which din't help and was bad on my liver than putted me on lamictal.My seizures got worse and i had jerks during the day,every time i told my neurologist the meds aren't working he told my dosage was too low altough my seizures waren't that bad and i disagreed with him since every time i tried to take more than 200mg of lamictal daily my myoclonic jerkes would be stronger and i would get electrical feeling in both of my hands.After 4 years another doctor (was a neurologist back in russia) in a hospital i worked told me he thinks its psychological since i can stop my seizures and feel everything during them and it sound like panic attacks and i should stop with the meds.That's what i did and also changed my neurologist.I felt really good after lamictal was gone from my system and the new neurologist was really nice and listening but wasn't sure if i had epilepsy or not.Then i went to an epileptologist which din't see something special in my eeg and said that even if i have epilepsy its not something serious.Later on i was put on valporic acid extended release,except getting 8 pounds over a month and becoming slow zombie like the meds barely did any good,still felt seizures but my trash hold was higher,i decided to decrease the meds again and stayed on a minimal lvl of 250 mg of valporic acid which i broke in half and actually made them not to work as an extended release (doctor orders for the morning dose).after 1 year my second neurologist decided to sleep deprive me and while doing the flashing lights i moved and jerked and asked to stop the flashes,my doctor said i had proxysmal activity and now he is certain i have epilepsy.I went to another epileptologist that said i do have juvenile myoclonic epilepsy of a kind that is rare and still im not sure he actually saw someone like me before,anyway since i did alot of research i asked him to reccomend me the med which called keppra and is knows to help with flashing lights and myoclonic jerks,he agreed it can help but even if i will be declained with that medicine there are other options (in israel you can't get keppra unless you failed 3 drugs and have less than 4 seizures a month).I got generic keppra which stoped my seizures altough i had side effects and now fighting to get the brand keppra after buying it with my own money and seeing its working better.Anyway finnaly found a drug that helps me and if not the driver license i want badly i would only take 250mg of keppra because its already enough to let me live normal unseizured life

couple of things i regret in life:
*Not switching ignorant neurologist and taking medication that din't help but having side effects like headecs and insomnia that actually affected my school grades.

*Blaming my friend for starting my epilepsy and not speaking with him for over 2 years after he bumped my head into a wall when we were both 15 and as you know juvenile myoclonic epilepsy usually starts in that age and mostly genetic and highly unlikable to start from a brain trauma.

*Suffering and being with epilepsy for 7 years without being controlled and thinking that taking anti-epileptic drug and keep having seizures is a normal thing.....

I guess if i had severe epilepsy and not only mild myoclonic jerks everybody would take me much more seriously.Not that i want it to be worse especially when it's in control now but still i feel like i throuh 7 years into the garbege and could lived much better life if doctors would tell me about side effects,will try to help me and not the medical insurance they cared about and most importantly,guide me about what to do.

My diagnosis is juvenile myoclonic epilepsy, I know its also PSE but unlike many juvenile myoclonic epilepsy's that actually have the PSE as an add on my juvenile myoclonic epilepsy seizures are depandent on my PSE and won't happen unless i close my eyes after i wake up and get up from bed or if i won't sit infront of a computer and play video games for hours.

The wierd thing is that sometimes i would be able to resist flashing lights and sometimes i won't,they don't bother me too much if my eyes are open and the more confidence i have the less the lights will bother me.

Neurofeed back is not an option as i understood from one doctor at my work that deals with that machine,he clamied my brainwaves patterns in eeg are always normal and even if they don't its only for a split second,to use neurofeed back you have to be with a bad eeg results so there would be something to fix and make your brain learn to work the right way.I can't imagine how can i use neurologist feedback if my seizures are triggered mostly when my eyes i closed

BTW one last thing i did notice is that if i won't get out of bed and will be in a dark room after waking up,even if 2 hours will go by Only after i will see a bright light something will change in my brain and my symptoms will look like i just woke up (washing my face etc).also after going into the sun in the morning first hour of waking up and will get back in to a dark corridor i will see flashing white lights by the sides of my eyes not infront of me like flashes of trees by the side of the road,no doctor could tell me what it was.

anyway this is my story and i wonder if there's anybody like me.

P.S=Sorry for the long post,just wanted to share my life's story.also about the grammer mistakes,its not my native languege and its kindda late now.I am going to sleep,if you have any questions or comments i will be happy to read them and reply accordingly.

[Nakamova]

Hi Kosta, welcome to CWE!

Unfortunately, the problem you describe with doctors and medications is not that uncommon. Doctors are often clueless at worse, and patronizing at best (though there are exceptions), and finding a medication/dosage that works can take a lot of trial and error. Mostly error.

It's interesting that a doctor ruled out neurofeedback as a treatment. While it's true that it's harder to track progress without "before and after" EEGs to compare, neurofeedback can be designed to enhance "good" brainwaves (regardless if the "bad" aren't showing up.) There have been documented cases where neurofeedback helped people with mycolonic seizures. Here's one: http://www.neuropathways.com/publications/epilepsy.html and here's another: http://www.brainspotential.com/servi...dback/research I recommend that you speak to a neurofeedback practitioner who specializes in treating epilepsy before closing the door on this kind of treatment.

Best,
Nakamova

[kostareyna]

tnx alot

[KimberlyD]

I understand how hard it can be to sit and listen to a doctor who acts almost as if they don't believe you even have seizures. I have had numerous EEGs through the years as well of other tests and they all come back normal. My diagnosis was idiopathic narcoleptic seizures (they don't call them epilepic because they only happen when I am asleep). My husband even gets frustrated because up until last year I always went by myself to the doctor, he went last year with me and saw what I have to go through. The looks of the doctor acting as if I just love taking anti seizure meds for no reason.

Good luck with your doctors and the best advise I can give is do your own research don't leave it up to them....it will never get done. Like you, mine are not severe enough for them to worry about.