New here....and to this new life i have to learn

[Tammy71]

Hello all. I didn't expect to go looking for a forum, but here i am. I am a mom of 4 grown/almost grown kids 16, 17, 19 and 23. I just turned 40 and just experienced my first seizures. I have always been a VERY independent person and used to holding down my fort as well as many others. My husband was in the Navy and just retired 2 years ago and we relocated to the NW GA - Chattanooga area. Now being told I can't drive (and wouldnt put anyone's life in danger by doing so), and having to rely on my husband and kids to take me everywhere is sad. My hubby said it would be "extra quality" time. Are you kidding?? He doesn't like grocery shopping, he's just saying it to make me feel better! Lol I guess I'm just still in shock. I haven't been diagnosed by Neurologist yet, the earliest they could get me in is 9 Dec. So far ekg, MRI, ct all came back normal?!?!?! Dropping to a floor in a store and turning purple, vomiting, heart racing and shaking violently is not normal. Especially never even knowing it happened, or that the paramedics came and I refused to go to the hospital. So, I'm here just looking for some sign of normalcy and to feel "not so alone". Thanks!

[Malla]

Hi Tammy, My MR and EEG's have so far come out negative too. And I understand completely having to rely on other people to get somewhere. I used to love to drive... now I drive only when my fiance is with me - or else I stay at home. We live a little outside of town so it's kinda boring watching the same leaves rattle on the trees day out day it... lol Anyways, have you found any triggers to your seizures? If you are able to find some triggers, then it can give a good indicator at what you're dealing with. My triggers are fluorcent lights, pc/tv monitors, caffeine, nicotine, aspartame and physical strain/pain. (You know lights in stores can sometimes trigger seizures) How long do your seizures last? Can you feel them coming, do you get some sort of warning? What happens after a seizure? Begin to write a seizure diary to better track your episodes. I did and It has helped me tremendously. Also in this forum you will find lots of support, these guys in here are fab Good luck, hugs Malla

[marion]

Hi Tammy -- I understand how you feel - I was in my 60's when I had the first seizure. After I was diagnosed I couldn't drive for six months. I live alone in a rural setting, so it was very difficult. What I did that helped a lot was to hire a high school kid to drive me. We had a set time, twice a week, and he took me wherever I wanted to go. Because of the set time, if I had to make an appt, I knew when he was available. It worked very well, wasn't too expensive, and he liked it. I good way for a kid to make some money. My seizures are controlled now and I drive, and that may be in your future too. Hang in there. And I know you'll get a lot of help here.

[Nakamova]

Hi Tammy71, welcome to CWE!

You are definitely not alone. A seizure coming out of nowhere is so disorienting and frightening. The first questions you struggle with are almost always "Why? Why me? Why now?" The answer aren't always forthcoming. It isn't unusual to have negative MRIs and EKGs. An EEG can often shed more light, although if that is negative it can make thongs tricky too.

Many folks have a one-off seizure and never have one again, so there is that possibility in your case. Can you think of anything -- anything at all -- that may have played a role in your seizure? It can even be something from a few days prior, or the cumulative effect of one or more stressors. The #1 trigger is fatigue, but other things can play a role, things likes hypoglycemia, hunger, dehydration, hormonal fluctuations, food sensitivities/allergies, infection, unusual physical, physiological, or emotional stress.

Were you put on medication after the seizure? If so, which one? Are you experiencing any side effects? I hope you have recovered from the physical after-effects of the initial seizure and can get a handle on things soon.

Best,
Nakamova

[Cint]

Dropping to a floor in a store and turning purple, vomiting, heart racing and shaking violently is not normal. Especially never even knowing it happened, or that the paramedics came and I refused to go to the hospital. So, I'm here just looking for some sign of normalcy and to feel "not so alone". Thanks!

Hi Tammy,

Sorry to hear of your plight. Unfortunately, you are not alone. My seizures started when I was 23. I've had those type of T/C seizures in public before also and not remembering a thing afterwards. The community I used to live in, the paramedics knew NOT to take me to the hospital unless the seizure lasted longer than 5 minutes. My children grew up seeing their mom have seizures, so they're better educated than most people about what to do/not to do when witnessing a seizure. Their dad was a pilot, so they did what they had to do.
Hang in there! We are here.

[valeriedl]

You came to the right place, since I came to this site I have gotten alot of information because the people here know what you are going through and give great answers and help with your questions.

My seizures started when I was in my mid 20's out of nowhere (I'm 35 now), and really don't know what caused them. I've been put on medicine and also have a VNS implant. It has stopped the severity of them and I'm not having as many seizures as I was at first.

I know what it's like to have to rely on other people to get me places. I can't be as indepent as I was before I was diagnosed epilepsy. My husband is a shopper who wants to go in one store, get what you want and try to be out in 15 minutes, if even that long. I'm a shopper who likes to spend time and look at things, who cares how long I'm in the store and how many different stores I go into. We end up getting into huge fights every time we shop together.

How many seizures have you had so far? If it's been more than one, as Malla said, try to keep a seizure diary. Keep track of things that you did before the seizure - Where you were, what was going on things like that. You might notice something that you did that triggered the seizure. Mark down how long the seizure lasted and what you did during it, as you said you blacked out and threw up and lost memory.

Generaly when I have a seizure I don't know that I had it. At first I was having memory loss of things that went on before the seizure. I still have it now but it's been long term memory.

I would try to find a neurologist and see what they would have to say about what's going on with you. If they pescribe medicine then it could possibly help very much with what is going on. It's something that won't be cured overnight though, it takes time for the meds to work.

[jyearta]

Hi Tammy,

I sorry to hear of your seizure.

I am glad you found this forum, I think you will find some answers, encouragement, and just plan old understanding in this forum.

I was diagnosed when I was 19 years old, I'm now 59.

I 1st. thought joining a forum like this would ONLY be each, saying I had a seizure, but to my surprise I found answers to questions I have had for years.

--I think in the furture I am going to put CWE as my Neurologist --that is just how much I have learned just going from site to site and reading the other post. I want to encourage to do the same.

It nice to not feel alone in this world of E.