First seizure.

Posted by gmamrj @gmamrj, Apr 9 4:34pm

I had a seizure 2 months ago while on vacation Texas. Was the first seizure I had ever had. EEG, MRI, ekg, Ct , echo and lung xray were all done along with a multitude of blood work. All tests were negative. Drs did not think it was a seizure.
Two months later I had a second seizure here at home. Drs have put me on Keppra and told not to drive. I am a zombie. Told I need to see a neurologist.
Trying to get an appointment at Mayo.
Has anyone had an experience like this?

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

In all my 45 years, never had 1 seizure. Last year I had 3 seizures between 3-4 months apart through the year!!

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@lmojackson

In all my 45 years, never had 1 seizure. Last year I had 3 seizures between 3-4 months apart through the year!!

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Do you have a question? I have several:
a. How do you know you had seizures?
b. Have you consulted a health professional about this?
c. What did that person say, and what did he/she recommend or prescribe if he/she agreed that you have been having seizures?
d. Your statement suggests that this year, so far, you have had no seizures....?
e. Have you had a recent head injury, or a concussion some time ago, any time in the past?
f. Were you under care, or were you taking any supplements, or a prescription, for a time just prior, or during, the period when you had the seizures?
g. Can you recall traveling prior to the seizures? Did you get ill?
h. Do you get auras, or have you ever had migraines?

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@gloaming

Do you have a question? I have several:
a. How do you know you had seizures?
b. Have you consulted a health professional about this?
c. What did that person say, and what did he/she recommend or prescribe if he/she agreed that you have been having seizures?
d. Your statement suggests that this year, so far, you have had no seizures....?
e. Have you had a recent head injury, or a concussion some time ago, any time in the past?
f. Were you under care, or were you taking any supplements, or a prescription, for a time just prior, or during, the period when you had the seizures?
g. Can you recall traveling prior to the seizures? Did you get ill?
h. Do you get auras, or have you ever had migraines?

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Consulted multiple doctors in neurology, specialists, pyschiatrists..... all feel this to be based on panic attacks that elevated blood pressure, body temperature, anxiety and lead to over exhaustion of the body. No concussions. No travel prior to the seizures..... blood pressure was already high yet controlled with medication. Now controlling the seizures with medication since last one Thanksgiving of 23. Very scary! Life altering and promotes more fear and anxiety and even depression for the most happy and optimistic beings!!!

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@lmojackson

In all my 45 years, never had 1 seizure. Last year I had 3 seizures between 3-4 months apart through the year!!

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Imojackson, sure sympathize. Had first seizure at age 71. Extreme anxiety and stress occurred couple months before and that was the only life change.

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@gmamrj
Hi there,
I’m really sorry to hear that you’ve started experiencing seizures. I've been living with them for 59 years now, and I understand how challenging this can be. A friend of mine once asked me, “how many seizures is too many?” and I answered, “I always thought the first one was too many.” Seizures can change your life and be a heavy burden, but you’re not alone in this.

Have you received a diagnosis yet? Are you experiencing Focal seizures, which are sometimes referred to as simple or complex partial seizures, or Generalized seizures, like Tonic-Clonic (formerly known as grand-mal) seizures?

While you navigate this difficult time, I want to encourage you to take some safety precautions. It’s important to avoid driving for the safety of all. If you decide to take a bath, please ensure someone is with you. Though it is uncommon, people have sadly drowned in showers too if they fall and block the drain, and even just a little water can pose a serious risk. Also, be cautious of burns if you fall against the temperature control.

When it comes to cooking, using a microwave can be the safest option. If you’re using the stove, I recommend opting for the back burners. I personally use the microwave most often but like my enclosed grill and air fryer instead of the stove. It's easy for me not to use the stove since I detest cooking.

I noticed you mentioned having sleep, anxiety, or depression issues, which can sometimes trigger seizures in some people. If you’re on any seizure medications, be aware that some may speed up vitamin D metabolism, potentially leading to diminished calcium absorption and conditions like Osteopenia or Osteoporosis. While Keppra is generally thought not to affect vitamin D levels, there have been some studies suggesting it might. It would be a good idea to check with your doctor about having your vitamin D levels assessed.

Additionally, be careful to ensure your refill medications are always from the same manufacturer. Switching between brand names and generics can lead to issues in some people. Most seizure medications can cause drowsiness, but I want to reassure you that this often improves after a few weeks or months.

Take care of yourself, and remember that you don’t have to face this journey alone.
Warm wishes,
Jake

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@jakedduck1

@gmamrj
Hi there,
I’m really sorry to hear that you’ve started experiencing seizures. I've been living with them for 59 years now, and I understand how challenging this can be. A friend of mine once asked me, “how many seizures is too many?” and I answered, “I always thought the first one was too many.” Seizures can change your life and be a heavy burden, but you’re not alone in this.

Have you received a diagnosis yet? Are you experiencing Focal seizures, which are sometimes referred to as simple or complex partial seizures, or Generalized seizures, like Tonic-Clonic (formerly known as grand-mal) seizures?

While you navigate this difficult time, I want to encourage you to take some safety precautions. It’s important to avoid driving for the safety of all. If you decide to take a bath, please ensure someone is with you. Though it is uncommon, people have sadly drowned in showers too if they fall and block the drain, and even just a little water can pose a serious risk. Also, be cautious of burns if you fall against the temperature control.

When it comes to cooking, using a microwave can be the safest option. If you’re using the stove, I recommend opting for the back burners. I personally use the microwave most often but like my enclosed grill and air fryer instead of the stove. It's easy for me not to use the stove since I detest cooking.

I noticed you mentioned having sleep, anxiety, or depression issues, which can sometimes trigger seizures in some people. If you’re on any seizure medications, be aware that some may speed up vitamin D metabolism, potentially leading to diminished calcium absorption and conditions like Osteopenia or Osteoporosis. While Keppra is generally thought not to affect vitamin D levels, there have been some studies suggesting it might. It would be a good idea to check with your doctor about having your vitamin D levels assessed.

Additionally, be careful to ensure your refill medications are always from the same manufacturer. Switching between brand names and generics can lead to issues in some people. Most seizure medications can cause drowsiness, but I want to reassure you that this often improves after a few weeks or months.

Take care of yourself, and remember that you don’t have to face this journey alone.
Warm wishes,
Jake

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@gmamrj I developed epilepsy 53 years ago and for the most part, on medication, I've been able to live a normal life, now 75. Jake covered many of the items above, some of which I've never considered, and I wanted to add one item. My neurologist told me at first to stay away from alcohol. Then, a few years later, the professor at a major teaching hospital in Phila said.....well, you can have a beer here and there. I was told that alcohol can decrease the effectiveness of meds that can help prevent seizures. So, is it possible alcohol can help cause seizures if you are prone to have one? This is something you may want to check into. Wish you the best.

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@gmamrj
I started to have focal seizures when I was a teenager and lived with my epilepsy undiagnosed for almost 4 decades. All my exams (EEGs, MRIs, etc.) were negative for epilepsy. But in the late 2010's this started to change; my seizures became stronger and more frequent. In 2019 at the age of 48 years, I was diagnosed with temporal lobe epilepsy and mesial sclerosis. In another discussion within our group, I have shared an interview of a young doctor whose epilepsy was undiagnosed for a decade. Here is the link to this discussion: https://connect.mayoclinic.org/discussion/husbands-72-hr-eeg-results-normal-but-he-was-having-seizures/.
Epilepsy and seizures can be quite challenging. @jakedduck1 and @njed have already given you valuable suggestions. I just add another suggestion that has helped in my journey since my epilepsy diagnosis: get some knowledge on your epilepsy. The Epilepsy Foundation was a good source for me to understand more about epilepsy, triggers, symptoms, etc. Getting to know your epilepsy better will also help the doctor who treats you. Cure Epilepsy Org can also be a nice source of information.
Ah, last but not least, if possible, try to see an epileptologist instead of a neurologist.
Wishing you all the best!
Chris (@santosha)

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Santosha, Maybe you could ask your doctor to switch your medication to ZONISAMIDE CAPS. It is the GENERIC FOR ZONEGRAN. My dose is : 3caps of 100 mg. at bedtime. Your doctor might have to play around with a dosage for whatever type seizures you have. In hospital I was on KEPPRA. It put me in a very dark place HALLUCINATIONS & many other things. I will never take KEPPRA again. I have ENCEPHALITIS of the frontal lobe causing my seizures for probably 20 years. I will be 95 in June. My brain is very good for which I am grateful. I know when I am having a seizure & I am aware of my surroundings. I stare into space & my right hand will wave. I wish you the best in trying a new medication. Keppra is not the proper medication for some people. You might be one of those people. Speak with your doctor ASAP. Get a second opinion if your doctor wont try a different medication. Check on zonisamide I have not had any side affects that I am aware of.

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@boomarang

Santosha, Maybe you could ask your doctor to switch your medication to ZONISAMIDE CAPS. It is the GENERIC FOR ZONEGRAN. My dose is : 3caps of 100 mg. at bedtime. Your doctor might have to play around with a dosage for whatever type seizures you have. In hospital I was on KEPPRA. It put me in a very dark place HALLUCINATIONS & many other things. I will never take KEPPRA again. I have ENCEPHALITIS of the frontal lobe causing my seizures for probably 20 years. I will be 95 in June. My brain is very good for which I am grateful. I know when I am having a seizure & I am aware of my surroundings. I stare into space & my right hand will wave. I wish you the best in trying a new medication. Keppra is not the proper medication for some people. You might be one of those people. Speak with your doctor ASAP. Get a second opinion if your doctor wont try a different medication. Check on zonisamide I have not had any side affects that I am aware of.

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Hi @boomarang
Thank you so much for your message.
In 2019 and 2020 I tried 5 different AEDs: Lamictal, Tegretol, Trileptal, Gabaneurin and Vimpat. Some of them could control well my seizures (Lamictal and Tegretol), but I could not tolerate the terrible side-effects I had. Others caused terrible seizures, like Trileptal. In 2021, I was referred to an epileptologist and started a different approach based on pure CBD, trigger management, and diet. I still had seizures, but I was a lot better than when I was taking AEDs. I could smile again and have a life. I am very sensitive to those medications, most probably because my type of epilepsy is highly refractory.
Unfortunately, my seizure threshold was reduced last December due to some circumstances I am currently facing related to the health of my parents. So, after a status epilepticus, the first one I had in life, I had to be put back on AED, Keppra, which I had not tried yet. I am sorry to hear you had such a bad experience with this AED. Thankfully, I am not having the Keppra rage experience many do report, though I struggle with other side-effects of this AED. Keppra so far has been the AED that has been harming me the least, perhaps because my dosage is a very low one. I have also been seizure-free with this AED, thankfully. My doctor respects my sensitivity to those medications and has been adjusting the dosage little by little, which is already below the recommended pediatric dosage.
But I thank you very much for your suggestions. I hope to increase my seizure threshold again and to be back on my previous treatment in the future, which harmed me the least.
Have a nice Saturday!
Chris (@santosha)

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gmamrj......I had my first tonic clonic seizure in June 2023 at age 69.....all my tests were negative also. Doc put me on Keppra. In May 2024, I forgot to take my pills one day and had another tonic clonic (non hospitalized). Since then, nothing. So, I am currently weening off the Keppra very slowly, down to 125mg twice a day so far and no changes have occurred. Hope to get off Keppra shortly. Much unknown about seizures and causes. I fell skiing and knocked myself out for a couple of seconds about 4 months before my first seizure and thought that may have brought my seizure on but the doc poo-podded that theory and shook his head. Who knows? Anyway, Keppra affects joint health and I have had joint issues in the past year especially my knees so want to get off of it. Good luck to you and God Bless
ray hippele

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