Worried after EEG!?

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So after I kept on telling pdoc I think we need to do an EEG she said ok, cant do any harm!
So we did the EEG yesterday......she urgently phoned me back to tell me they have picked up on slow brain waves in the left posterior temporal lobe....it might be because of epilepsy or tumor! So now we are waiting urgently to get an appointment with pead neuro! In the meantime we just need to carry on as normal! Since he was very little I were asking about epilepsy, but nobody really took notice! My son is very depressed about all this, so I am trying to help him understand he is not ill and that we can get help now to make things better! This is so difficult!

Oh...I'm sure you are not in a good place. I've got you guys in my thoughts! Fingers crossed!

I imagine how worried you must be. I'm also interested in symptoms...we did ados today and they suggested an eeg and I am not sure why.

I imagine how worried you must be. I'm also interested in symptoms...we did ados today and they suggested an eeg and I am not sure why.

Ok...he had all the typical AS symptoms....but what worried me was his terrible moodswings, aggressive outbursts, followed by intens crying, tiredness and irritibility......He also complained about terrible headaches.....he gets nausius from the headaches.....
He can be fine and then maybe you say something that upset him his eyes will changed and he will start screeming, swearing, exct and it seems as if he doesnt register what you say and often afterwords he cant remember parts of it. As a baby he would fist his one hand and shook it.....and sometimes he will stare infront of him as if not registering his surroundings.....

While I'm sure you must be very frightened, you are on the path of figuring out what your baby needs. That's good, even if scary. I will keep you and your family in my thoughts.

As a mom I can tell you that worry doesn't solve anything but yeah, try to stop it...

I was recently diagnosed with epilepsy but it's been suspected all my life. I just had the EEG's within the past three years. I'm 52 now. I don't have grand mal seizures, in fact, I usually don't know when I'm having a seizure. I know when I've had 20 or so within a day. They manifest mostly in migraines - horrible migraines where I loose entire days to the pain. Other times, it feels like my tongue is swollen (I checked, it isn't) and my perception of the texture of the world changes like one of those revolving, three-color lights. One minute it's smooth, then next spikey, the next moundy, etc...

I started paying close attention to what I called my "spells" when I was about 22 and a young mom. I noticed I had more spells when I was overtired. Stress, especially the kind that lasts for days or weeks, can set me off as well. And the weirdest thing is it happens when I get constipated... I have NO idea what that's about. So, I make sure I get enough sleep and I avoid stress whenever possible. When I can't, I try to compartmentalize whatever and deal with life in smaller doses.

I tried all the anti-seizure drugs. ALL of them. My neurologist couldn't do anything but prescribe drugs. I had bad reactions to all of them. They took away months of my life. At one point, I'm told I was actually drooling. I don't remember.

The doc sat me down and told me harshly that I'd "FAILED" this drug and I'd "FAILED" that drug. She was very unkind about it, as if I'd done something so offensive I shouldn't be allowed to exist. Then she fired me as a patient. I was glad because during some of the other tests she did, she actually smiled when she drew blood - like some kind of Nazi doctor.

So, with me in charge, I started searching for alternative treatments. What did the ancient Chinese do? The Ayruvedics? After much research, I found that there are others like me, unable to tolerate modern treatments. I stumbled on medical marijuana as an alternative drug for epilepsy. It's much more mild than the harsh prescription drugs currently available. I infuse cooking oils with it and use it in my diet rather than smoking. There is much less THC in the parts of the plant I use and more cannabinoids so I don't get woozy high and I feel better than I have in years. The cannabinoids are what stop the seizures. The epileptic symptoms are rare anymore.

I know it works because before I discovered medical marijuana, I had an EEG that showed the seizures. After beginning the mm treatment, I had another EEG and there were no seizures. A year later, I had a followup EEG and still no seizures. At this point, I saw a different neurologist who is more open-minded. We agreed that I would stop using the oils for two months and he would do another EEG. Sure enough, the seizures started up again so he ok'd the MM - off the record, of course.

The best part is not having so many migraines anymore.

This is just my story. I didn't mean to get so much into the MM part because I know lots of people don't approve. I'm not suggesting you put your son on MM but keep it in mind if he has trouble with the drugs.

Try not to worry too much. Stress isn't good for you, either. It will be what it is and you will deal with it like a champ. Many people live with epilepsy. It's not the end of the world. Just be there for your boy with plenty of understanding and hugs.

Thanx for your support!
Unduki...very interesting post!
Must say....I am not that much worried about the epilepsy...I have suspected it for years! I am more worried about a possible tumor? For waiting on a list, not knowing if it will be weeks or months before they investigate it.....I am waiting for a phone call everyday to know when we can come to see dr.
The pdoc lowered his antidepressants, because he became toxic and very irritible.....he is actually doing well, I am suppose to increase the meds again to his previous dose, but this was before we heard about the possible epilepsy. I have read that antidepressants can lower the epilepsy threshold, so now I am worried to increase it again. She also wanted me to start Abilify before we know about the eeg results.....now I am unsure....his irritibility is so much better since she decreased the SSRI......but his sadness and crying is worse.
We have pdoc appointment on Monday....maybe I must just hang in there with the meds and wait till we see her on Monday?