Ever since I was a young child (I'm 43 now), I have had intermittent spells and episodes of blanking out, being unable to speak or move, losing control of my body, shaking/trembling, and extreme mood swings that come out of nowhere and disappear just as quickly that leave me feeling exhausted and very low/depressed. In the past, I have fallen because of one of my "blank-out" episodes. These are somewhat disruptive, but they don't keep me from living my life. They did become more frequent and more intense last year, but lately things seem to have quieted down somewhat.
I have had an MRI and an EEG, but both came back normal/inconclusive. I am considering doing a longer ambulatory EEG to see if my doctor can get more data.
But I'm not sure I want to pursue a diagnosis or be treated pharmaceutically. I have heard many things about the ill effects of AED's, and how they can sometimes trigger more serious seizures. I've gotten to a place in my life where I can pretty much identify and adjust my behavior and activities to accommodate these spells. I feel like I've just now started to level out and am better able to manage my situation.
But if I am having complex partial seizures, as my neurologist suspects may be the case, is there possible danger in allowing them to go unchecked? What are the risks and dangers involved in just "letting myself be" and continuing to have intermittent spells and episodes as I have been?
I am the chief provider and head of my household, and stopping work is not an option. I also cannot afford to "experiment" with medications which may take me out of commission and/or make matters worse. But I don't want to put myself and my family in danger, if these spells are going to cause me long-term issues.
What are the risks to my body and mind, if I don't seek medical treatment of my condition?
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.
Without the ability to examine you and obtain a history, I can not tell you what the exact cause of your symptoms is. However I will try to provide you with some useful information.
Even if you had a normal EEG and MRI, you could still potentially have seizures, and the diagnosis would be made if you had an event during one of your episodes and if the EEG confirmed seizure activity. If ambulatory EEG is helpful in making the diagnosis this would be good, but if not, admission to an inpatient monitoring unit for prolonged video EEG recording (over days, until an episode is captured) would be necessary,
Diagnosing and treating seizures is imperative. Even if your seizures do not bother you much, seizures are as you suggest above a significant risk to both yourself and others. Untreated seizures can, unfortunately, lead to severe injury and death. Even if you have been having these episodes all your life without consequence, if they are seizures, they could one day become a prolonged convulsion leading to injury, or even death. If you had one of these while driving, or holding a child, or operating heavy machinery, you could harm yourself and others. Uncontrolled seizures can affect the brain, they can lead to worse seizures and can lead to a certain time of damage to brain cells. You are absolutely correct that AEDs have several side effects, but it is all a matter of weighing the risks and benefits of continuing to have seizures or enduring the side effects of AEDs. You are correct that sometimes AEDs are a trial-and-error, if one doesn't work, another may and you sometimes have to try more than one to achieve some seizure control. But the risk of not treating a seizure is in most cases greater than the risk of AEDs. Some patients tolerate AEDs very well, despite the multiple reported side effects.
Continued followup with your neurologist is strongly recommended, it is very important to discuss your questions and reservations about AEDs with him/her.
Thank you for using the forum I hope you find this information useful good luck.
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