just diagnosed

[markr72]

So, I had a seizure the other day. Get this, I was in the doctor's office when I had one (I guess that would be the best place to have one.) I had a grand mal, AKA, tonic clonic. Bit my tongue and lasted for about five minutes, also pissed myself, haha. Don't remember any of it. This was my second seizure. I had one about one year ago, when I was driving. Don't remember that one either. I "woke up" and a cop asked me my name and I didn't know. He must have thought I was drunk or something. I saw the police report and it said, after I hit two cars and a guard rail, that people came to my car and I was having a seizure. After the first one, I saw a neurologist, I hated her and my EEG came up as, in her words, inconclusive. I didn't believe I had a seizure. I thought I just lost consciousness or something, probably cuz I hated her so much. But after my GP saw me having one, I'll take his word for it.
When I was younger, and still to this day, every day I get something, I call, "the staring feeling." When I tell people, they have no clue what I'm talking about. My eyes get locked on something, for about 5-10 seconds and I can't look away. I also "zone out" about 2-3 times per hour. If I'm reading a sentence, sometimes have to read it three or four times before I can remember it, I thought it was ADD or something, but I'm starting to think it is because of the seizures.
I know this is long, I just feel like I had to say it. later.

 

[Nakamova]

Hi Markr --

Welcome to the site! There's a lot of good information here, as well as forums to vent and chat in. Your post isn't long at all! Feel free to say what you need to say -- that's what we're here for.

The "staring feeling" you describe sounds a bit like a kind of simple seizure, so it's possible you've been experiencing a form of epilepsy for some time. The lack of a conclusive EEG is fairly typical -- EEGs can be useful but are not definitive in diagnosing epilepsy. Some people on this site have never had a positive EEG even though they've had epilepsy for years.

Amazing that you were in a doctor's office for your second tonic-clonic seizure! Were you at the doctor's for a specific reason? Sometimes infections or fevers can lower the seizure threshold, making you more susceptible to having one. Many people have found it helpful to keep a health journal where they record details of diet, stress, sleep, activity, etc. -- anything that might be a clue about what brings the seizures on, and what to try and avoid to limit seizures in the future.

Explore this site, get comfortable, be well.

Best,
Nakamova

 

[Meetz1064]

G'morning!

Hello there, I hope you're doing a bit better after the initial shock of what happened in the doctor's office.......

Nakamova's quite right......it does sound like simple seizures going on. And an E journal is the perfect thing. Here's what I suggest to put into it:

1. Sleep. List how much & when.

2. Eating. List how much, when & what. It's possible to have seizures caused by allergies to food.

3. TV/computer/video games. Yup, they can affect you if you're photosensitive, so list when, what, and HOW LONG.

4. Menses (for women). Start tracking your cycles. CATAMENIAL epilepsy does exist, sometimes it's tied to ovulation, sometimes its right at the TOM. Also, LADIES, DO get a thorough check of ALL your hormones done—female, thyroid, and any others. Believe it or not, they do factor in on seizures.

5. Stress List when it occurred, and what happened.

6. Exercise List what you did, when, and any reactions.

7. Seizures/auras. If you have either, DOCUMENT THEM. Auras--note what they're like--do you smell or taste something that others don't? Hear something? Seizures--how long, when, where, what happened. If you don't KNOW what happened, get eyewitness accounts when possible and DOCUMENT THEM.

8. Smoking and alcohol. Ditch them--both are neurotoxins for our brains.

9. Meds (of ANY kind). List the dosages, and when taken.


Responses to the above list

1. You MUST get 7 to 7.5 hours of sleep as a MINIMUM, no ifs, ands or buts about it.

2. Eating--one of the other mods, Skillefer, (we call her Skilly), promotes eating 6 small meals a day, using a dessert plate, filling it with a carb and a protein. Good idea, I think. However, some people, like me are allergic to certain foods. You might want to look into various diets. Ketogenic, Modified Atkins, Low Glycemix Index, Gluten Free Casein Free (see www.dogtorj.com).

3. Look into a glare screen for your computer or blue tinted polarized GLASSES (available by prescription from eye doctor). These can help cut down on seizures that are caused by photosensitive epilepsy.

4. GUYS--you may not have a cycle, but you DO have hormones. DO get your doc to do a full hormone screen, check thyroid, etc, just to make sure.

5. Use things like yoga, music, walking, whatever it is that you do to bust out your stress. Keep a separate journal to write in so that you can write out your feelings in--and keep it for your eyes only. Write it out by hand, two or three pages at a time. It helps A LOT. DO IT EVERY DAY.

6. REFLEX E can be caused by exercise, so DO track what you do. Keep in mind that you SHOULD NOT swim, bike, hike or bungee jump by yourself. Same goes for mountain climbing.

7, 8 & 9. 'Nuff said.


*********SOMETHING TO NOTE*********

Several others have noted that they have to track when they move their bowels, as their seizures seem to be tied to when that occurs, too. You may want to include that in your E journal, also.

OK, the journal IS a pain in the arse. No doubt about that one. BUT it DOES help the doctors track things down.

I wish you luck, but please feel free to stick around, and check things out. We have tons of information here, and plenty of people to make friends with. :banana::banana::banana: So kick up your feet, sit down, and relax. We'll answer whatever questions you have to the best of our ability, and if we can't, we'll try to direct you in the right direction to get the best answer.

Take care.

Meetz
:rock:

 

[markr72]

funny side note (not for the weak stomach... warning)

Thanx for the responses, didn't know a lot of that stuff.

Just something funny that happened. It's kind of gross, but my friends and I got a kick out of it. O.K. so, like I said, I pee'd (is that a word?) on myself: turns out my cell was in my pocket. I had to take my cell to a Verizon store. The guy behind the counter took my phone and handed it off to about five people, before he told me it was broken. I didn't tell him what happened, I just told him I spilled water on it. I felt bad that he handled my phone for about 20 minutes, but I don't have urination insurance.

Bottom line, I got a new (urine free) cell phone. Good, my battery was shot anyway.

If the Verizon guy is reading this, Sorry. Wash ur hands.

 

[markr72]

driving

After I had my first seizure, I was told not to drive anywhere. It makes sense. I'm from NY (Long Island) and my job is three towns away.

Walking distance is about 15 miles, trust me, I have timed it like one million times, and I had it down to a science.

My state requires that a person be "seizure free" for one year before U start driving again.

How does every one do this.

I don't want to endanger people, but how do I get to work.

P.S.

 

[Meetz1064]

Is there

someone that you can carpool with, or that you can give gas money to, so that they can come get you? You may have to explain why, of course, but.... There's also something called Dial-A-Ride in some places, but I don't know what the qualifications are for it in NY........

 

[RobinN]

Hi Mark - My daughter's job is 18 miles away. We tried Metro one day, and that took us 5 hrs. RT. So we make changes in our schedule to drive her. It is important to us that her life continues in a positive direction. She is only 17 so, this has been a choice we have made. You would be in great shape if you rode a bike.

I want to tell you that there are a lot of people finding alternative ways to control their seizure activity. It does sound like you have been having symptoms for quite sometime, and decided to ignore them. I can't stress enough that nutrition plays a huge role in neurological problems. If you scan through the library here you will find multiple threads on the subject. So simply by making new choices in how you feed your body, you might see positive results. This however does not happen over night.

In the meantime learn as much about your particular situation that you can. Your sense of humor will help, and get support here when needed.f

Glad to have you join us.

 

[alivenwell]

Welcome! I am in PA where they also have stringent driving laws. Can you possibly move closer to public transportation stops? I have made a science of connecting routes that take me to work. My current job is a 5 minute drive away from here, but a bus ride can take up to 20 minutes. In this area, lack of bus ridership is causing them to shut down routes or extra times within bus routes.

Do you have a county-wide transportation system? They usually need a call ahead of time and come with a van. It may cost the same as a taxi.

Now that you have a new cell, have you stored all the bus and taxi phone numbers in it? Also, it is a good idea to have web access so you can be notified about any bus route cancellations.

 

[Allyson]

Sorry to hear about your seizures, and the trouble with getting to work. Luckily for me, when I started having seizures just a few weeks ago, I was already living in DC, across the street from a metro, so I don't need to worry about that on top of everything else. Do you own a house, or rent? If you're renting, is it possible to move closer to work when your lease expires?