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First Seizure 1 month ago...
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An_258449 posted:
Hello everyone,
I haven't been diagnosed with epilepsy yet. I have had tests done and I am awaiting the results. A month ago I had my first seizure and since then I have had 5 others. The most recent one being at 2:13am this morning. I am scared, I don't really know anything about seizures in people but I have a dog that is epileptic. Can anyone help me with information? Like what family members should do during my episodes, how to prevent them, what triggers them?
I usually start feeling weird then I get shaky, my eyes move weirdly, I don't lose concusiness but I do get confused. I try to focus on something when it starts so I won't be as confused when I come out of it. I don't know why I do this, I have done this since the beginning. My speech gets slurred if I am talking. And when I come out of it I get a bad headache and just feel tired all over like I want to sleep... Is this normal?
Thanks for reading this and I am grateful for any help. Like I said I am scared to death almost.
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dancer86442 responded:
Hello,


Welcome to our Community. Please visit the Epilepsy Health Center (highlighted in blue at top & bottom of this page.) to learn more about Types/symptoms. I am not a Dr, but, I can provide you w/ some info & useful Tips. Since you don't lose consciousness, these may be complex partials. But, Each of us is 'unique' in what we experience & what triggers our seizures. In other words, we can have the same Type, w/ similar symptoms & different triggers. But, still behave a bit differently. I will say that everything you are experiencing, including Fear, is pretty much 'normal'.


Family members should start by timing your 'episodes'. Other than that, stay calm, speak calmly & stay w/ you, in case you start wandering. They should note any other Unusual behavior. Lip smacking, tugging at clothes or other repetitive behavior. How to Prevent them? Well, that will be up to you & your Dr. Who will probably want to prescribe anti-seizure medication. But, I suggest you do some 'homework' about 'alternatives'. Diets, neurofeedback & exercises such as Yoga, meditation are a few alternatives. When I first started Learning about alternatives, coping-with-epilepsy.com was Very Helpful. Since your dog has Epilepsy, also, please visit www.dogtorJ.com A Lot of what he says about Diets is applicable to Humans, too.


Read our info about Daily Journals in Helpful Tips & start one today. It is a Very Valuable tool for You & your Dr. And can Help you figure out what is triggering your 'episodes'. You should Track your seizures, also. Taking note of when they happen & how long they last. Some cell phones have apps that will help you keep track. But, a calendar works well, too.


Keep in mind that you are Not Alone. Keep asking questions! Keep Learning! As Meetz says Knowledge is Power! Plus, it can Help you overcome some of your Fear. Just take One Day at a Time. You will be Fine! You can read my Journey by cliking on my Pic or ID.


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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saxofone1 responded:
Hello and welcome to our family,

The fear that you're experiencing is nothing to be embarrassed about. I had to walk my mother through my seizures since my first one in '75.

Candi has shared with you what many of us had to learn. Similiar seizures with similiar triggers vs similiar seizures with different triggers is simply part of the path we walk.

Having a journal handy to note diet, time, menses, etc in regards to seizure activity is a great help to the docs. They appreciate all info that we can share with them.

Some of the alternatives(acupuncture, and a low-sugar diet) were effective for me for awhile. I eventually returned to the traditional meds once the seizures boomed out of control. That was simply how my ep went.

Check Amazon for your reading material. There are many great books about ep that might be helpful to you and your loved ones.

Seems like you joined us at the right time. Sunday, August 3rd, is Friendship Day. You have found some new friends who are here to help/support you any way we can.

angie
 
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tara_ravensblood replied to saxofone1's response:
Thank you Candi and Angie! I am so glad to get responses. Like I said I am scared to death. the info will help and I will check it out. I just wanna share this experience with you all. I am sorry to ramble on...

I had my first public seizure (not in a hospital) yesterday in the Dollar Tree. It was different than the others. I was smacking my lips, my mouth was dry and I didn't know where I was. I was with my mother and I was in another part of the store when I started to feel weird so i went looking for her and I kept dropping things and picking them up. by the time i found her I was already entering seizure mode. and I could barely stand up, I was drooling and had to hold to a shelf to keep my balance. I dont know if it is normal to cry (not with the wailing just the tears) but I did cry I will admit that. After it was over I had a bad headache, the back of neck at the base of the hairline kinda swelled like when someone gets a tension headache and I was super tired. This made 2 in less than 12 hours. one at 2:13 am and the other at 9:35 am.

Thank you all for reading this...
 
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dancer86442 replied to tara_ravensblood's response:
Hi Tara,


Thank You for responding. We are short of members, but, we are Strong w/ what we do know. I have been w/ WebMD Community for over 20 yrs & Of Course, I have always done homework. It really helped Knowing I wasn't Alone. I Hear how Much it helps Other PPL in this Group & other Groups, to feel the same.


Being in Public, having an episode??. It Happens. Seizure activity does not discriminate as to when, where, or how long. It is an electrical misfiring in our heads. We have no control over it. It is kinda like a lightning strike, during a Thunderstorm. Yet, we don't see it. Some ppl have what I call Sheet Lightning. Both sides of the brain are affected. Good Part: A recent discovery: We have an automatic 'Light Switch' in our brains that determines how Long our seizures will last. Most times after 2-3 minutes, it will flick off. . Sometimes Less, sometimes More. Modern Research is Amazing. But, our History is just as Fascinating. Lots of Talented ppl, past & present, have had Epilepsy. Now, I'm rambling.


OK, so you write all that happened down? Think about where you were each time during previous incidents. I Ask others', if they ere around, what They witnessed. Don't be Embarrassed to Ask. You need Info.


You are Fortunate. You Remained Conscious & Aware. Again, everything you have described Does Happen to others'. Headaches/migraines are considered co-morbid w/ Epilepsy. In other words, ya got one, ya get the other. So, you Learn to keep a travel size bottle of headache meds.


Yes, It's Scary, but, as Eleanor Roosevelt once said: To over come Fear, you face your fears. Remember, there is always Hope & your Dr will help you. And we will be hear to Listen. To walk w/ you, on this Journey. Hugs


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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saxofone1 replied to tara_ravensblood's response:
Hi Tara,

Good to hear from you. My first seizure was at home during spring break. But, oh boy, have I had many in public. Most of them when I was by myself. Somehow I always got to a place of safety( a friend's job site, or home). How I did that I don't know. I think my brain just swithched to automatic. No need to be embarrassed about having a seizure away from home.

Are you familiar with the medic alert bracelet? the bracelet I speak of is not the one you might see at a pharmacy. This is the id bracelet that identifies your medical condition as well as having a 24-hr emergency number to call should you be in need of service. With this organization, you can list your specific med problem, meds to take/not take, allergies, emergency numbers, etc. I've had one for 30 yrs. Wearing it gave me mom a sense of security since I liked to go about my own business by myself. I believe their site is medicalert. org.

The seizure that you descriped sounds like a complex partial. Your motions sound like what people often told me about my seizures.

Keep asking us questions. None of us minds your "rambling" cause we all need to let it out occassionally or whenever.

We're here to support you in any way that we can. Be stronger than the seizures so that you will be able to move forward.

Have a good FRIENDSHIP DAY!!!

Till next time,
angie
 
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tara_ravensblood replied to saxofone1's response:
Thank you both for posting. Can you believe it is going to take me until way up in Oct before I can get in to a neurologist? I just wish my family doctor could give me something to at least slow these down while I wait. But she thinks because its not a "major" seizure then it may have something to do with my heart. However, they had me hooked up to a heart monitor in the ER as I was having one and it showed normal. In fact everything I was hooked up to said I was in perfect health with the exception of being aniemic.

But I woke up with one today and didn't know what was going on until someone touched my arm and I was already coming out of it. First for that. What is the best way to keep track of these?
 
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dancer86442 replied to tara_ravensblood's response:
Hello Tara,


Neuro visit: Where do you live? Yes, that does seem like a bit of wait. But, I have noted recently, that others' are having to wait Month's b4 being seen, too. Especially in Canada or the UK. Possible solution: please call the Neuro's office tomorrow & ask to be put on the Cancellation List. Most ppl are required to 'cancel' at least 1 day b4 their appt, which gives you Time to make arrangements to get there.


Family Doc: well, at least she was covering the bases as to possible cause. But, obviously, she has no clue as to how serious Any seizure activity is. But, I Know the Majority of Family Docs will not Prescribe anti-seizure meds until you have seen a neuro who will place you on the proper med for your seizure type. Then, family docs Will write up a prescription for Refills.


I do have a question for you. Have you been experiencing a Lot of stress, b4 these 'episodes'? This includes sleep. Less than 8-10 hrs?? As abnormal sleep patterns Can cause stress to our bodies, too. And stress is a Trigger for seizure activity.


The person who touched your arm. Did they describe what they saw? Again, did you write it all down? Keeping track? Several Options: A small purse/Pocket Calendar. A Cell phone app calendar. Or visit epilepsy.com for a print-out tracker they have. If you read my first post, again, you will note I suggested calendars. Or you can just include it in your Daily Journal. Check Dollar Tree. They should have Journals. Hugs


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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saxofone1 replied to tara_ravensblood's response:
Hi Tara,

So sorry about the long wait til you're able to see a nuero. Do your best not to let it frustrate you out. Frustration, like stress, an be a seizure trigger.

Please follow Candi's suggestions about calendar, notebooks, observations of others, etc. You might be able to pick up on what might be triggering some of them. I've been keeping notes/calendars for 39 yrs. The doctors are always grateful for any info that we can share with them.

Is there an epilepsy foundation in your area. If so, the efa often has support groups. Besides us, you might find a new source of support as well as information.

Hang in there. It can be tough but I feel that we are only dealt the hands that we can handle. We simply have to want to, as we as learn, know how to play it.

angie
 
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tara_ravensblood replied to saxofone1's response:
I keep a book of the days and how long they last, I even put little bullets to describe what was seen, how I felt before/after. He said I was just shaking and smacking my lips. My eyes were opened but I wasn't responding. I do not remember all of this myself. I remember opening my eyes and shaking. Then when i was coming out of it he tried to get me to roll over on my back but I remember being too afraid to move.

I notice I have more seizures when I don't get enough sleep. The first one I ever took I was staying at the hospital with my mother but I hadn't been sleeping much, eating much, you know typical hospital stuff. Don't get me wrong it's not always when i don't get enough sleep. I've had it happen when I was well rested.

Now, for the past few days I have felt terrible. Like I do right before I take a seizure. I don't know why I am feeling like this. The closest Epilepsy center is either in Ashland or Lexington and both those places are 100 or more miles away.

Thank you both!
 
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dw1963 responded:
I had my first grand mal seizure a year ago. My husband woke up to it. I don't remember a thing but he called 911 and the paramedics took me to the hospital. It is scary, but for me was almost a relief that they finally could diagnose what was happening on and off for approximately 4 years. I would get a weird feeling in my head and basically pass out.The main thing is for whoever is around you while the seizure is happening is to make sure you are safe and not going to fall and hit your head, etc. The tiredness is normal too. It wears me out after a seizure and would really just like to sleep. I too get confused after one or even a partial one. Hang in there, you will be fine and go about life and most days forget you even have seizures. If you hear of a way to prevent them, let me know. That I haven't figured out yet
 
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saxofone1 replied to tara_ravensblood's response:
Hi tara,

I didn't do any shaking but I certainly smacked my lips. Changed to my pjs if the seizure occurred when I was at home. I didn't remember changing my clothes. I did so many things during a seizure. I was simply on automatic.

Seizures wiill occur at times that don't always fit with what we condsider our "triggers". Having a seizure can wear us out. Sorry to hear that you're not feeling well. But that often is part of having a seizure. I know it can be rough. But as dw says, here will come a day when it no longer phases you.

Think about calling the efa that is 100 miles away. They might be able to send you some reading material.. Possibly help you with finding a doctor.

Keep moving forward.

angie
 
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dancer86442 replied to tara_ravensblood's response:
Hi Tara,


There can be several triggers. www.epilepsytalk.com has a list of possible triggers & Weird triggers. I know keeping a daily journal can sound daunting. but, until you see the dr you will need all the info you need. You are your Best Advocate. BTW: Take a witness w/ you to any Neuro appts. It helps. You needn't go to an Epilepsy Center, unless you want/need to.


BTW: Concerning the person helping you,, If you know this person, Tell them to ensure you are laying on your side while you recover. Tell anyone who knows you too. On your back you could swallow/choke on excess fluids/bile. But, you can not swallow your Tongue!


Hope you are feeling better, by now. One Day at a Time. Hugs


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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tara_ravensblood replied to dancer86442's response:
Thank you both so much. It really helps me and makes me feel better knowing I am not alone and that there is help. I will take your suggestions. I actually had one in front of a doctor (moms doctor) and he asked all kinds of questions about what medicine I was on and who my neurologist was. It felt weird telling him that I don't have medicine or a neurologist. But I am hopeful that we will find out what is causing it all. I think stress may be on my triggers too, I dunno if that is a normal trigger or just with me. I know when i don't get enough rest I usually have them more often.

Happy August!
 
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saxofone1 replied to tara_ravensblood's response:
Hi Tara,

Stress is definitely one of the most popular triggers for seizure activity. During my college days, my seizure activity increased when it was time for mid-terms and finals. I also had "extra" seizures week prior to and during my menses. Yahoo menapause!!!!!

We will have similar triggers as well as ones that seem to be distinctly ours. You seem to be on the alert about what your's our already. Keep working on that journal. No notes, info, or questions should be considered unimportant. All shared info is definitely pertinent to your case.

angie


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