Aeeg

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MountainMama

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I started my ambulatory EEG yesterday, and it's going pretty well, or as well as it can go, I suppose. But the stuff on my head gives me a very painful, non-stop headache. Just general pressure all over my head, but with stabbing pains from each little electrode (the chest ones are fine, the head ones are not).

Did anyone else experience this?

The tech told me I could take Benadryl as the cement was likely to irritate my skin/scalp, but I didn't ask about taking migraine medicine for what is now a n electrode related migraine. (Im waiting for the office to call me back now). It's not unmanageable, I mean, I've had worse headaches, but it's really starting to get to me.

It's also hard to log my headaches as I constantly have one from this set up, which is slightly frustrating.

On the bright side, the surgical bouffant cap (that I have to wear at work) covers most of the head stuff without looking strange, so that's a plus!
 
The weight of the of the hanging wires and/or how tightly they are bundled together may be creating a pressure feeling in your head. I was aware of this during the first few hours but after a while I was more willing to experiment with different ways of positioning the wires in terms of how they hung around my body, and where the electrode box was positioned. Try lifting the bundled wires up so they are not hanging down, and then strap them higher up on your body with a belt or something like that. Might help :)

Also, when you go to sleep tonight position the electrode box between the wall or headboard and your pillow (and therefore the wires will extend from the top of your head). For me it made it far easier to sleep as I wasn't worrying about rolling over in my sleep and feeling the pull of wires or waking due to lying on the electrode box.

Did setting up the video camera go okay?
 
Thanks! They wrapped my entire head really tightly in gauze and I was given really specific instructions...not to mess with the gauze AT ALL, not to take off any of the equipment for any reason INCLUDING sleep (chest strap/pack for electrode box, fanny pack for battery supply and incident button) not to drop the camera but also to make sure it is pointed directly at my face at all times...stuff like that.

I called yesterday about the electrodes hurting me and they said take whatever you need to feel better but don't touch it. So I had some naproxen...and then some excedrin migraine...and then out of desperation some migranol, but nothing helped. By 6 pm it was all I could think about and It was taking a lot of energy not to rip the thing off my head. In the end I tugged on the gauze until it loosed up a little bit and the blinding pain immediately went away. My whole head feels (and probably is) bruised but that horrible feeling of having point rocks strapped to it is gone. I am really good at ignoring pain, it's one of my stronger points, but that right gauze for 27 hours wrecked me. Hahahaha! Hopefully I didn't mess anything up, I just couldn't function anymore.

So they gave me the camera already set up. It's big bulky thing, and it shoots in infrared so lighting doesn't matter BUT they did not give me a pole so I have to carry this brick around in front of my face all the time. �� The other down side is that it only has a two hour battery life so I basically have to be near a power outlet pretty regularly. The tech said if the camera battery dies it will dump the information and we have to start the whole test over. My commute with traffic in the afternoons is about an hour and a half so I've been so nervous! Hopefully hopefully traffic will be light on my way to work this morning, and then they are going to remove my wires at 11 am.

Fingers crossed they got what they needed and I don't have to repeat it!
 
Just got it removed...my whole forehead is bruised and all three spots on my forehead were bleeding. So...gonna guess that bandage was a little too tight! Really relieved to have it off there.
 
Congrats on getting rid of that contraption!! And well done loosening the gauze wrap. I think the techs give their dire warnings more for people who might go so far as to disconnect wires, turn the unit on and off, play with the settings, etc. But after the first 12 hours I realized there were a few things I could do quite safely to make things more comfortable, just as you figured out too :)

Every hospital/clinic has its different way of gearing people up with these AEEGs, I guess. Where I am seen my head wasn't wrapped in any way, but the wires themselves were pulled to the back of my head, braided and then just the wires and electrode box were wrapped in gauze. The electrode box and battery pack were a single unit within a small bag designed to be worn like an over-the-shoulder purse but I found it was constantly in my way so readjusted the whole strapping system to create a make-shift fanny pack to give me more freedom of movement.

How long until you get the results? I sure hope something helpful is learned from all this :)
 
I'm am so jealous your head wasn't wrapped! Mine was one of the more extreme wrap jobs. They wired me up and then pulled all the wires into a pony tail at the top of my head and then very tightly wrapped my entire head/ears/neck in gauze several times and then my entire head and face went into a stockinette bandage and they cut out a hole for my face. It was so tight by the 29 hour mark I couldn't sit still and couldn't think about anything but the pain. At that point I was honestly struggling not to remove the whole thing. I stretched out the gauze and everything was immediately better.

The tech looked at the marks that were left on my head an apologized for wrapping it so tightly. She said she was trying to make sure none of the wires moved! Hahaha! They definitely did not move, thats for sure!

My appointment to go over the results is October 19th unless they show something emergent, in which case they will call me immediately. I asked what would be emergent and she said "seizures" so...it's hard to say what will happen. ;)
 
A month seems like a long way off, doesn't it?! At least you have the assurance that you will be called in the event there is something urgent that needs attending to. It can take a long time to go through the data, esp. when looking for something other than obvious EEG seizure indicators (eg. something that might be appearing at night on video only and that does not have an associated EEG abnormality). I hope you will keep us posted :)
 
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