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Misdiagnosis

hi. in 2007 after almost 10 years of seeking help and being medicated with a heart medication I was diagnosed with left temporal lobe epilepsy. I saw and was treated and medicated by the same neuro for almost 10 years with meds getting adjusted after almost every visit. My symptoms kept getting worse. I should point out that I never had a lot of seizures, maybe 3-5 per year. Well I was getting tired of my then doctor keeping patients waiting for more then 2 hours past their appt time and sought the help of another neuro. He did a 96 hour in hospital eeg and had me do a lot of different movements to reach a diagnosis of syncope, not epilepsy. My prior neuro only did an annual in office eeg and nothing else. So now I have been diagnosed only with syncope and do not take any medications. So my query is if any of you have ever had the same or similar situations.

Comments

I'm sorry Scooter, I have not

I'm sorry Scooter, I have not had that experience that I can relate with.  If you do have epilepsy I'm sure that having a heart condition complicates your problem.  I'm sure it must be painful to face doctors that cannot agree upon a diagnosis.  But I have an idea that may help.  I had to do a quick search to learn that syncope is the temporary loss of consciousness due to a fall in blood pressure.  It would be nice to confirm that your loss of consciousness is due to a blood pressure drop.  Drug stores sell at home blood pressure monitors.  You might want to get one of these and test your bp the next time you have a seizure.  I do not know if this would confirm or rule out seizures or syncope as there may be a loss of pressure after seizures.  But it may provide  interesting info.  It seems if you are prone to blood pressure drops then a heart specialist should be treating this.So how long have you been off of your epilepsy medication?  Have the seizure frequency changed any?  I've been off of medication a couple times in my life.  I did well for a couple weeks and then bam!  I was in the intensive care unit because I experienced status epilepticus, or non stop seizures.  Be careful.I'm sorry to hear that you do not have a firm diagnosis, but you are fortunate if you do not need to take anti seizure meds.Mike

Hi, Thank you for posting, it

Hi, Thank you for posting, it sounds like you’ve been through lot. We are so sorry to hear that you had such negative experiences with your previous neurologist and are glad that you sought out a second opinion with a different doctor, for further diagnostic testing. It’s important that you're continuing to follow-up up with your current neurologist to review your new diagnosis further and if you experience any changes in seizure types/frequency,symptoms, moods and behaviors to help determine what individual treatment plan is best for you. Michael has offered some great advice and things for you to review with your neurologist. You may want to consider keeping a journal or diary. My Seizure Diary:https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-... a great tool for identifying & tracking seizures, setting reminders, managing medications & side effects, recording medical history, moods, behaviors, triggers, and other therapies or personal experiences, that may affect seizures and wellness, which can be shared with your healthcare team. Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000,or contactus@efa.org. epilepsy.com/helpline   

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