Clueless, please help me!

[devinsmommy]

Hi, I am new here. My doctors suspect that I am having some type of seizures. We are not sure what ype as of yet. It started out that I would get these weird feelings and feel like i would black out. I would remember what I was doing before and then i wouldn't remember how i got to where i was afterwards. Almost like a blink of my eyes. I have had these feelings before and i would feel weird and spaced out for a few days. I would have a difficult time processing thoughts and be extremely forgetful. My eyes would also feel very heavy, like i was sleepy. And my head would feel kind of "swimmy" and my vision seemed disturbed, like i couldn't focus on anything.

About 2 months ago, I began having this extremely intense throbbing in the right side of the back of my neck. It was so intense that i though maybe i was having some sort of stroke or something. I would then get a really intense headache on the right side of my head. The headaches would last 3-4 days and nothing would help it. It would happen like this 1-2 times a week.

For the last 2-3 weeks, I have basically kept a constant headache on the right side of my head, persistent neck pain and like an achy, tired feeling in my neck. I have been having headaches all over my head as well. I have been taking over the counter NSAIDS to which I get no relief. I have been blacking out more, my vision has stayed disturbed, I have also been nauseated. And having all the feelings described in the first paragraph. I have also had a loss of appetite. I feel like I have lost my short term memory. So much so, that my husband has to monitor my medications when I am taking them because I can't remember what or if i took it. My body has become very achy all over. I feel horrible and I am wondering just how long these feeling can last after you have a seizure? I have been afraid to stay by myself with our 7 year old son, I have felt so bad. And have feared sleeping because I am afraid I may not wake up. I also have bouts of feeling REALLY irritable.

Also, I have been on Lamictal, 200 mg, once a day for the last 2 1/2 months. I have been put on it for irritability, but still doesnt help with that. But these symptoms and feelings still persist. Please help me, I am so clueless.

 

[momof3boys]

Im so sorry for what youre going through. Have you had doctors run tests? Like an EEG or MRI? I know when I first started having seizures as a infant, my parents said the doctors took me in for tests to determine what the causes were. It was then they found out I had left temporal lobe epilepsy.

 

[devinsmommy]

I had an MRI done yesterday evening and I have an EEG scheduled for friday morning. Is epilepsy or seizures something that you are born with or can it develope over time? This has been going on for several years but i never thought anything of it and only in the last couple of months it has becomre a lot more intense and the neck pain is new

 

[MaryK]

Welcome to CWE. Sometimes people have a type of seizure for years before they are officially diagnosed. I can relate to your blink of an eye. I have tonic clonic seizures, but also have exactly what you are describing although usually precipitating by light.. I am photosensitive to flashing, strobe, etc light... I was first bothered with migraines as a child that progressed to seizure activity.

Your doctor will do the necessary tests to help him diagnose the type of seizures you have. Seizure patterns change over the years in most of us, even the seizure types.

It might be a good idea to keep a journal of your symptoms and any precipitating factors such as stress, flashing lights (does not just have to be on TV, could be sunlight flashing through trees while in the car) caffeine, alcohol, not enough sleep, just anything that you might think is a factor.

Take care and keep us posted
Mary

 

[momof3boys]

It can happen at anytime. Like me, I was born with it. I started havin seizures when I was just a tiny baby. My mom noticed times where I would stare, and not respond to her. My eyes would blink really fast and Id be kind of out of it. But this is when I was just months old. It wasnt til I was 18 months that I had a tonic clonic seizure and she called the Ambulance, who then took me to the hospital, and ran tests. They did a MRI and it came back normal, but the EEG they did came back with seizure activity. My seizures were coming from the left temporal lobe area. I grew up having complex partial seizures, and tonic clonic seizures. Now that Im 31 years old, Ive been put on one seizure medication, and my dr thinks I might have outgrown the bad seizures, and now only have simple partial seizures. Simple partial seizures is where you are consious through out the seizure. Its kind of a weird and scary feeling. I started having these in march of 2011 when I had my first VEEG. I was admited to the hospital for five days and instead of having tonic clonic seizures, I was having simple partial seizures.

Ive heard of lots of people having seizures when they get older too. There are alot of people who post here that have said they started having seizures when they were older. If not treated properly, the seizures can get worse as time goes on. Hopefully the EEG on friday will give the doctors more answers.

 

[devinsmommy]

Also another symptom i have been having is that when someone is talking to me, i hear what they are saying but it makes absolutely no sense to me and i cant remeber what they were talking about

 

[momof3boys]

That sounds like something I had when I was having complex partial seizures. I remember the symptoms prior to the seizure coming on, but I cant recall what I did during the seizure. After the seizure, I was very tired, confused and just not all there. I would sleep it off for a day at least.

 

[Nakamova]

Is epilepsy or seizures something that you are born with or can it develope over time?

Both.
Epilepsy is a catch-all term for over 40 different kinds of seizure disorders. Some of them have a genetic basis, some are present at birth, some develop in adolescence, some develop in adulthood, some develop in the elder years, some are precipitated by head injury or structural problems (tumors lesions), some arrive out of the blue, some start with simple partials and progress over time...

Do you keep a seizure/symptom journal? It may help you sort out what's going on, and potentially identify any patterns or triggers. It may also indicate if some of what you are experiencing is caused by the Lamictal. For instance, Lamictal has been reported to cause joint pains, headaches and memory problems for some people.

 

[devinsmommy]

Thanks. I have experienced these symptoms before i started the lamictal

 

[Hand of Blood]

you sound very much like i feel! i get pain in left side of my head all the time and tired confusion, cant focus on things etc i put it down to side effects but im not sure.
keep going back to docs etc to get answers from them why u feel like this! try to get them to try more tests on you .... if your worried dont hold back! we are here for u!