First seizure.

@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

@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.

@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)

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.

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)

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

Thank you for the info.
It’s so weird that they can’t figure out what causes the seizures. I had all the tests and nothing showed up. I have had all my records sent to Mayo for review. Since I have had 2 open heart surgeries there in Rochester, I am praying to get an appointment with a neurologist soon
Were you allowed to drive?

@hippele
Hi Ray, Good Morning
Thank you so much for sharing your experiences with us. I have been on Keppra since last December because I went into a status epilepticus, starting at 500 mg twice a day and currently being at 125 mg in the morning and 150 mg in the evening. I also face joint and muscle pains. Interesting you have shared this with us!
Last week, I was having more intense body pains and feeling very weak and tired with headaches all the time. So, my doctor has asked me to do exams for dengue (we are currently facing a new dengue epidemic here in Brazil), influenza and Covid. All came out negative. I was prescribed 500 mg Novalgina (Dipyrone, which I know is not available in the States) and my muscle and joint pains, fatigue and headaches have been relieved a lot. My doctor believes I am having a certain inflammation and recommended I see an immunologist, with whom I have an appointment this week. This inflammatory state has already happened with me while taking another AED (Vimpat) in the past, it affected my immune system.
Besides those joint and muscle pains, are you having other side-effects with Keppra such as fatigue, abdominal pains (especially after eating and/or taking Keppra), headaches and others?
Thank you and wishing you a nice day!
Chris (@santosha)

Doctors do the tests to rule out the obvious things like a brain tumor, stroke, meningitis, bleeding on the brain etc. Those are the easy things and then they treat for that. Once all those tests are negative, science at this time has no clue as to what starts or causes seizures. Like I said in an earlier post, all they do then is throw some pills at you and hope something sticks. Again, not very reassuring. And yes, I have been driving with no issues, thank God!
God Bless
ray hippele

Chris.......We know Keppra affects joint health as it is in the literature. Whether it is the Keppra or just older age for me is unknown but it seems odd that in the last year and a half since my first seizure, my joints have been giving me alot of problems is questionable. The only other side effect I had with Keppra is diarrhea or very soft stools pretty much every day.
And I always question whether a certain pill or medication actually helped or would the issue have gone away by itself.....as you were speaking about pains, fatigue and headaches. In a normal state, the body cures itself so we are never sure it was helped by the "pills"!! God Bless
ray hippele