Newly diagnosed with seizures

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Hello I’m Randy and I’m 34 yo male I’ve just recently been diagnosed with left temporal lobe seizures and honestly this is all I really know at this point my follow up appointment is next Thursday. I’ve been having ALOT of symptoms over the last year including constant lightheadedness, severe insomnia, fatigue, among others but these are the most problematic. I’ve been through so many tests including mri, ct scans, ekg, stress test, and so on and so on and recently had an EEG done which showed the left temporal lobe seizures. Could this be an explanation to all my symptoms? Does this mean I have epilepsy? I’ve got so many questions I understand if they go unanswered I just don’t know what to make of this honestly I wasn’t expecting it. Does epilepsy just all of a sudden start like this in a Middle Aged person? Any help would be greatly appreciated. I don’t feel like I’ve ever had a “seizure” so I just don’t know.

Comments

Wow Randoo, it sounds like

Submitted by birdman on Thu, 2019-05-16 - 21:24

Wow Randoo, it sounds like you've been through a lot. I am not a doctor but I have had epilepsy for all my life (50+yrs). It sounds to me like doctors are trying to figure out the cause of the symptoms you described. MRI and CT scans are done to look for any structural damage that may be causing your discomfort with lightheadedness. For your fatigue and insomnia they did the stress test. As I understand it anyone can have a seizure, but some of us are more prone to having seizures due to various reasons like injury, illness (one that could have occurred decades ago), genetics and so on. I think that just because your EEG showed up that you had a left temporal lobe seizures doesn't mean that you have epilepsy. It could be that the severe insomnia you've experienced could be causing you to have seizures. When technicians do EEG's they often require sleep deprivation because whether a person has epilepsy or not sleep loss leaves the brain more vulnerable to seizures. Stress is also another component that makes us more vulnerable. So your seizures may be just a symptom of another major problem that needs to be taken care of.But then again epilepsy has been known to become an issue in middle aged and older adults. Maybe you do have epilepsy and for some reason are becoming more prone to seizures. You wrote that you don't feel like you've had a seizure. Do you understand all the ways that seizures can present themselves? Most people think of the convulsions when they think of seizures, but then there are the staring spells which can leave a person unaware and confused afterward. And then I have seizures that are so brief and subtle that I can be talking to my mother and she wouldn't even know I had one. They are just a mild sour smell / taste. Every patient is unique and it may take some time for the doctors to figure this out. Any symptom that comes and goes periodically could be a sign of a seizure and deserves to be brought to the attention of the doctor.The doctor did the EEG and found left temporal lobe seizures. Next the doctor may prescribe an anti-seizure medication. This is not to say that you have epilepsy, but it would be one more test to see if this type of medication relieves any of your symptoms. Write your questions down and present them to your doctor. Mike

Wow Randoo, it sounds like you've been through a lot.  I am not a doctor but I have had epilepsy for all my life (50+yrs).  It sounds to me like doctors are trying to figure out the cause of the symptoms you described.  MRI and CT scans are done to look for any structural damage that may be causing your discomfort with lightheadedness.  For your fatigue and insomnia they did the stress test.  As I understand it anyone can have a seizure, but some of us are more prone to having seizures due to various reasons like injury, illness (one that could have occurred decades ago), genetics and so on.  I think that just because your EEG showed up that you had a left temporal lobe seizures doesn't mean that you have epilepsy.  It could be that the severe insomnia you've experienced could be causing you to have seizures.  When technicians do EEG's they often require sleep deprivation because whether a person has epilepsy or not sleep loss leaves the brain more vulnerable to seizures.  Stress is also another component that makes us more vulnerable.  So your seizures may be just a symptom of another major problem that needs to be taken care of.But then again epilepsy has been known to become an issue in middle aged and older adults.  Maybe you do have epilepsy and for some reason are becoming more prone to seizures.   You wrote that you don't feel like you've had a seizure.  Do you understand all the ways that seizures can present themselves?  Most people think of the convulsions when they think of seizures, but then there are the staring spells which can leave a person unaware and confused afterward.  And then I have seizures that are so brief and subtle that I can be talking to my mother and she wouldn't even know I had one.  They are just a mild sour smell / taste.   Every patient is unique and it may take some time for the doctors to figure this out.  Any symptom that comes and goes periodically could be a sign of a seizure and deserves to be brought to the attention of the doctor.The doctor did the EEG and found left temporal lobe seizures.  Next the doctor may prescribe an anti-seizure medication.  This is not to say that you have epilepsy, but it would be one more test to see if this type of medication relieves any of your symptoms.  Write your questions down and present them to your doctor.  Mike

Wow Randoo, it sounds like you've been through a lot. I am not a doctor but I have had epilepsy for all my life (50+yrs). It sounds to me like doctors are trying to figure out the cause of the symptoms you described. MRI and CT scans are done to look for any structural damage that may be causing your discomfort with lightheadedness. For your fatigue and insomnia they did the stress test. As I understand it anyone can have a seizure, but some of us are more prone to having seizures due to various reasons like injury, illness (one that could have occurred decades ago), genetics and so on. I think that just because your EEG showed up that you had a left temporal lobe seizures doesn't mean that you have epilepsy. It could be that the severe insomnia you've experienced could be causing you to have seizures. When technicians do EEG's they often require sleep deprivation because whether a person has epilepsy or not sleep loss leaves the brain more vulnerable to seizures. Stress is also another component that makes us more vulnerable. So your seizures may be just a symptom of another major problem that needs to be taken care of.But then again epilepsy has been known to become an issue in middle aged and older adults. Maybe you do have epilepsy and for some reason are becoming more prone to seizures. You wrote that you don't feel like you've had a seizure. Do you understand all the ways that seizures can present themselves? Most people think of the convulsions when they think of seizures, but then there are the staring spells which can leave a person unaware and confused afterward. And then I have seizures that are so brief and subtle that I can be talking to my mother and she wouldn't even know I had one. They are just a mild sour smell / taste. Every patient is unique and it may take some time for the doctors to figure this out. Any symptom that comes and goes periodically could be a sign of a seizure and deserves to be brought to the attention of the doctor.The doctor did the EEG and found left temporal lobe seizures. Next the doctor may prescribe an anti-seizure medication. This is not to say that you have epilepsy, but it would be one more test to see if this type of medication relieves any of your symptoms. Write your questions down and present them to your doctor. Mike

Hi Randoo254, Thanks so much

Submitted by Anonymous on Fri, 2019-05-17 - 09:11

Hi Randoo254, Thanks so much for sharing your story. We cannot determine if you have epilepsy, or not, so It’s very important that you continue to follow-up with your healthcare team. For additional information about temporal lobe seizures please visit, https://www.epilepsy.com/learn/types-epilepsy-syndromes/temporal-lobe-epilepsy-aka-tle & for information about epilepsy https://www.epilepsy.com/learn/about-epilepsy-basics/what-causes-epilepsy-and-seizures and diagnosing epilepsy,https://www.epilepsy.com/diagnosis You may want to consider with your doctor having a device that can help track seizures, by visiting https://www.dannydid.org/ , and by keeping a seizure diary, https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary as another self-management tool. These tools may be helpful in identifying & tracking seizures, other symptoms, managing medication & other therapies, recognizing triggers and health events that may affect seizures and wellness, which you can share with your healthcare team. You may also contact our Epilepsy and Seizures24/7 Helpline: 1-800-332-1000, contactus@efa.org , epilepsy.com/helpline , where a trained information specialist can connect you to resources, provide referrals and additional support. Additionally your local Epilepsy Foundation epilepsy.com/localsupport, www.epilepsy.com/affiliates ,can help you find resources, support groups, events, and programs in your community.

Hi Randy, It’s a lot to

Submitted by clo_clo on Mon, 2019-05-20 - 09:15

Hi Randy, It’s a lot to process at the beginning, especially when you are going through the diagnosis phase and then trying the find the right management program. Don’t get too caught up in all the tests and feel intimidated. The doctors are trying to get the full picture before making a call. I was diagnosed with TLE when I was 18 but my EEG came back normal but from all of the symptoms I was experiencing it was very clear that I fell into the TLE category. Getting a diagnosis is the easiest part. Once you understand what is happening to you, you are able to start working on a treatment plan that will effectively manage whatever condition it is that you have. So my advice is to never fear the diagnosis. Knowledge is power. Take it one step at a time