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andreww

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Hi Guys,

I am Andrew from Australia. I am 41 and had my first seizure at 39.

I have had 4 seizures on two occasions. They have occurred when I have been in bed after working long hours, under stress with minimal sleep.

The first time was in a hotel room when I was working interstate. I awoke to my right hand shaking uncontrollably. After a few minutes the pain raced up my arm and I couldn't move. It felt like a few seconds until I lost consciousness. I thought I was having a heart attack, and didn't have a chance to grab the phone for help.

As best I recall, I had 3 seizures that night. I would just wake up to it starting again. The next morning, I could hardly move. The blankets had been tight and every joint in my body was damaged. It took weeks to recover.

I went through various test, and the doctor thought it was a one off.

I had the next one 10 months later at home, but under the same leadup. My wife called an ambulance, and I ended up in hospital under observation for 5 days. I had 2 siezures that night. I am now on Dilantin,see a neurologist 3 times a year and have made some lifestyle changes.

I have not had a seizure in 10 months, but this week have had the same feeling in my hand, and it has given me a real fright.

Last week I slept outside (in winter) for a charity cause, and only managed to get 2 hours sleep. I have also returned to work after a break. Otherwise, it is a pretty normal week. Today I had a bit of a tense discussion with a staff member, and instantly, my heart rate was up and my hand started to tremble.

So I found this forum and hope I can get some advice from others who are going through the same thing. I am worried about losing my confidence again.

What do you when you get the early symptoms?


Thanks guys,

Andrew
 
Welcome Andrew!

Sorry to hear about your situation. Nothing is more frightening than not knowing what is going on and being away from home! I guess I am pretty lucky, most of my seizure activity is while I am sleeping. But, I can pretty much determine when I may have one by what I did during the day and how much sleep I may have missed as well as stress levels. Don't get discouraged. Tell your Dr. about it and maybe he will up your levels or start you on something different or add a medication. It is good to have you with us!:hello:
 
Hi Andrew, welcome to CWE!

It seems like fatigue is a trigger for you, so the best thing to do is try to get plenty of sleep. If you're behind on hours, try and get in a nap during the day (even just ten minutes can make a difference), and consider trying 20 minutes of meditation twice a day. By meditation, I mean having a regular time slot to calm and de-stress your system -- all you need to do is breath slowly, focusing on just the breathing, resting your eyes, perhaps listening to comforting music. In general, taking care of you overall health as well can make a difference. Here's a good place to start:
http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

We have some other Aussies here, you're in good company! And in general, the members of CWE are terrific and very supportive. So welcome again. I hope you can take some time to explore the all the forums.

Best,
Nakamova
 
Hi, Andrew.

Welcome to the forum. I'm happy you found us.

I'm so sorry you are going through this. Everybody has hopes their seizures are under control, then for some, the seizures start breaking through. I'm hoping that this is just a rare breakthrough seizure for you.

Early symptoms that a seizure is coming are often called an "aura." Auras are different for everybody. Mine are like an electrical feeling in my body that's like a bad chord on a piano, plus a feeling of forboding. They feel horrible. Some people smell weird stuff, or see light patterns, etc. They take a lot of forms. My epi says these are actually mild seizures, all by themselves.

Here's some reading on auras:
http://www.epilepsy.com/epilepsy/auras
http://epilepsy.about.com/od/symptomsandcauses/f/aura.htm
http://en.wikipedia.org/wiki/Aura_(symptom)

When I get an aura it gives me time to make sure I'm not doing anything where I could hurt myself if I have an altered conciousness seizure (Complex Partial in my case), so I get out of the pool, turn off the stove, or whatever. The problem is that these can last on and off all day.

There's not much I can do about my auras. I've tried meditating, listening to music, etc., but when they come, they come. Those things do work for some people, just not me.

Some more great reading is the thread here in the forum on Epilepsy 101. http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

Hang in there.
 
Hi Andrew, welcome to the forum. :hello:

Lack of sleep might be the most common seizure trigger around. Your brain needs proper sleep to maintain a healthy balance of important chemicals for proper functioning. My wife has extreme difficulty maintaining her seizure threshold when she isn't getting 9hrs of sleep every night. Sleep deprivation is insidious because it has a cumulative effect. You might be able to cheat here and there without a problem, get a false sense of security and then... bam when the cup overflows (so to speak).

If you are interested: http://www.coping-with-epilepsy.com/forums/f22/time-change-problems-disruptions-sleep-patterns-506/
 
Thanks for the feedback and support everyone.
So would the tingling / mild throbbing sensation I get in my hand be considered an aura? It happens just before a seizure.
However this time round they started on Friday during a meeting, and I have had the same sensation on an off for 3 days.
Btw, my sleepless night was Wednesday, so there is a likelihood it has contributed.
Thanks
Andrew
 
Hi Andrew,

The tingling could be considered an aura -- and an aura can itself be a kind of seizure called a Simple Partial. So even if you don't lose consciousness, the hand sensations may be a sign of seizure activity in the brain. You might want to consider having your med dose adjusted upward slightly.
 
I know that when I am under stress I am likely to have a seizure. I try to calm down and not let things get me worked up, but sometimes that just doesn't work.
 
Hi Andrew,

When was the last time you had your Dilantin level checked? Do you usually keep a fairly steady level? When I was on Dilantin, if my level was too high or too low (I couldn't keep a steady level) I felt an electrical jolt kind of feeling in my arm sometimes. It was like my brain wanted to seize, but not all the ingredients were there, so it fizzled out.

Also, when I got stressed like you in your confrontation at work, I felt extremely jittery and tingly; sometimes I had what I called a "white out". I felt like a balloon being squeezed at the bottom so that all the air went to the top (my head) and everything went white for a few seconds.

Until my neuro took me off Dilantin, I had to be extra careful to avoid any stress. I don't know if that would have been the case if I'd been able to maintain a steady level.
 
hi, Andrew,

The tingling feeling might be an aura, might be just a pinched nerve. One way to tell is to keep a seizure journal, that tracks auras, seizures, your medications (including over the counter), possible seizure triggers, etc. Over time you may see a pattern in the tingly hand.

An example for me is migraines. I had them daily for years. I was in agony. I started keeping a seizure journal, and I learned that my migraines were always postictal (after a seizure). Once we got rid of the seizures, no more headaches. It's like I have a new life. :)

If it turns out the feelings in your hand is an aura, yes, you'll want an adjustment in your meds to take care of it. This is a way to find out if it is an aura, too. If it is, the increase or change in meds should take care of it.
 
If I had to guess Andrew, I would say the shaking of the hand is a simple partial seizure which then at times goes into a generalized seizure (taking over the whole brain). This is how my daughter's very first seizure occurred. Her head also turned to the side, and then she lost consciousness.

We tried meds but her seizures were worse. Now she has made nutritional changes and her seizure control is getting better and better. She has only had two this year, where on meds she had six a month.
 
Thanks everyone,

Great information and suggestions.
My nueologist is on holidays, and his office suggested I speak with my GP.
I have now setup a journal to get a better understanding of the trend and triggers.

I had 9 hours sleep last night, and feel fine today.

Thanks for your help.
 
Tingling in the extremities (fingers/toes) can be a symptom of Dilantin toxicity. You should get your blood syrum level of Dilantin checked IMO.
 
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