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I began having seizures (that I am aware of) in 2009. I had my first one in June and broke my shoulder blade (Scapula) from the convulsions. I was not in any state of distress at this time. I was rushed to the E.R. with no confirmation of having any abnormality on an EEG. In fact, it was almost not believed that I had a seizure, but was physically being abused, which caused the seizure. This was not the case at all. In addition, doctors believed since there was no concrete medical evidence that this was a type of seizure called PNES (Psychogenic Non-Epileptic Seizures) – often brought on by psychological factors. I felt the doctors were telling me I was self-inducing them. Doctors did end up prescribing me Topamax; with little benefit. Pre-seizure auras, followed by convulsive seizures continued. At this time, after an aura, it would lead directly into a seizure. I have had tests ran, numerous EEG’s conducted with no positive outcome. From 2009-2013, seizures continued at the least monthly to ever few months. I was eventually taken off of the seizure medication and remained off anticonvulsants until July 2014. In September 2013, I had six Grand-Mal seizures leading “status epilepticus.” I was rushed to the E.R. with the seizures; finding out it caused Congestive Heart Failure, kidney failure, and caused a lung to collapse. I was treated for these conditions and hospitalized until October 2013. During this time, I was under no prescriptions for seizures. I experienced one aura during my stay in the hospital without a seizure following. Upon release from the hospital, I was prescribed no anticonvulsants. Since my release, I have experienced seizures and auras (most commonly). Even after being rushed to the E.R., yet again, doctors still seemed hesitant to take things seriously. I have gotten several opinions – three different ones in fact. My last epileptic event led me to the E.R. where I was prescribed Lamactil, mind you, by the original Neurologist that treated me for the PNES. I was released from the hospital on this medication and have been taking it consistently ever since. I began in July on 100mg 2x/day and was increased to 150mg 2x/day when my seizures continued. Mostly, I have auras, or at the least – a feeling of an aura, often not followed by a seizure; some cases I do have a pre-seizure aura and it leads into a full blown seizure. Most often than not, I experience the auras. I also want to say I hope I am not helping to induce them myself due the fact I worry obsessively about having one or if I will be alone and somewhere safe etc. I am always trying to prepare and notice how I am feeling. Often times I sit down to ensure if I do seize I am somewhat out of harm’s way. I do this regularly throughout my day. Some days I do not experience any of those feelings or auras. I am looking for answers, suggestions, things to ask the doctor. I feel I am running out of options and questions to ask to get me the care plan I need; for somewhat to take my case seriously. Any help is appreciated!

Be well - RHP
 

Cint

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Sorry your having such a difficult time. Those 'auras' you refer to are actually simple partial seizures, so keep searching for a dr. who will take you seriously. Where you seeing an epileptologist at a University hospital? Since you've already gone 'status', the drs. at the ER should have known to send you to an epilepsy specialist. It isn't every day that someone just goes status like that! And just because no abnormalities show up on the EEG, does not mean that it isn't epilepsy. A lot of times they don't show up on the EEG. But that doesn't make it PNES.

More info on SP seizures:

http://www.epilepsy.com/learn/types-seizures/simple-partial-seizures
How are simple partial seizures diagnosed?
A complete medical history and physical examination can help to rule out other possible causes of the symptoms and assess the likelihood of epilepsy. Although EEGs are also helpful they may not always show an abnormality during a simple partial seizure?
 

SlimBlue

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It definitely sounds like you've had a rough time of it- though unfortunately this quite usual :(

They'll see a 'possible' cause and jump on that. Any test you have, they'll much rather use as a basis for treatment than actually listening to you describing your symptoms. It disgusts me. I've been having full t-c's for 20 odd years, yet my EEGs just show 'possible epilepsy'.

If they were in my career as a Software Engineer, they'd be fired instantly. They're so called specialists, yet are using basic information they learnt in med school years ago, which at the end of the day is just based on guess work from the last century.

At least you're on proper meds now. I understand that you worry about your seizures- who of us doesn't, right?

The stress will make them worse though unfortunately :( I understand you want to prepare for them, and that's good, but at the end of the day the best way to deal with E is try and reduce the effect it has on your life- though of course it's right to learn how to deal with it on a day to day basis- just try not to be obsessed with it..

At least they're finally treating you for your condition now, just keep pushing for information, and make sure they explain their decisions for treatment.
 
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tsprowl

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I am so sorry to hear about all your issues and the fact that it seems no one is willing to really help you or just giving you the run around. I had my first seizure at the age of 16 for no apparent reason. I had my 2nd one about 6 months later and was put on meds right away. My whole life after that has been trial and error, on finding meds, doctors, people who understand me, and lot's of other issues coming along throughout my life. I am now 37. I hope you are able to find someone who is caring and able to give you the treatments that you need.
 
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