"Suffering the Slings and Arrows of Outrageous Fortune"


Emily had her EEG on Monday afternoon. Amazingly, she had two episodes – perfectly representative of what she normally does – during the test. We could not have planned or timed it better!

She started having a few sporadic twitches as she was being prepped and I knew we were on borrowed time. I got to stay with her; I had been worried about it and was grateful that I didn’t have to leave. The tech started the test and had her essentially hyperventilate for 3 minutes. After about a minute of that, I could see that she was starting to fade, but she completed the 3 minutes then said she felt like she was going to have one. A few seconds later, she went limp and stopped responding. She twitched and jerked every 10 seconds or so and the tech recorded those in her notes. She started having labored breathing and gasping for air like she usually does. At about the 5 minute point, her eyes opened and she was able to respond a little, although she was still dazed.

Then she went straight into the second episode. This one was longer – about 10 minutes and the twitching and jerking was stronger and more frequent. The tech finally gave up recording each jerk because she couldn’t type fast enough. Again, she had labored jerky breathing and I had to remind her to breathe a few times. She finally opened her eyes and could respond. Once she recovered a little the tech was able to complete the EEG and we  were done in less than an hour. She twitched and jerked during the strobe test, but didn’t go into an episode.

So, I feel like they should have gotten pretty good information from the EEG. It very well may not show anything, depending on what is causing the episodes (I really want to just call them seizures and be done with it but I won’t yet). But, she had two episodes and that is all we can ask for – they were witnessed and documented so we have some validation. I do wish they could have caught the second, more visual/ sensory type during the test as well but those happen much later in the day so it never likely that she would have that kind then anyway. I am grateful they saw anything, to be honest.

I am waiting to hear the results from the doctor. They didn’t call first thing this morning so I left a message, because it may not seem urgent to them but it surely is to us.

She has now had 35 episodes since the 9th and that will, if the pattern holds, increase to 38 or 39 this afternoon. They are getting longer and stronger. Last night, she had the visual type combined with the unresponsive type and jerked constantly for 6 minutes – she swayed, then saw the usual light and visual distortions, then went limp.  I laid her back on the pillows where she jerked and twitched worse than she has before. Then it was over and she was fine, after she got over feeling like she had been run over by a truck.

She is having less warning  before it happens, so she is less able to call for help. She is going limp quicker, which means, if it hits when she is upright, she could be seriously hurt. Realistically, it is just a matter of time before that happens, unless she gets some effective treatment, asap. So, if I make a nuisance of myself, so be it. If the doctor’s office is annoyed, they can deal with it and come up with a plan or refer us promptly to someone who can.

But, the upside  is that she had episodes during the EEG so I am hopeful that they gathered information that will help us get to someone who can helps us figure this out. Because, frankly, it sucks. A lot. And we have to do something. Soon.


Comments on: "EEG" (4)

  1. Christy said:

    I’m so sorry she’s going through all this and I’m so sorry that you, as her mother, have endure it as well. It sounds like seizures because all the things they do during an EEG are things to bring on seizures and it seem to work. I pray you guys can get some answers and find a doctor to that can help her….as well as understand EDS and all the things it tends to bring on. I’m here if you need to talk to someone because I know firsthand about seizures. I had to go through 2 brain surgeries to stop them and honestly out of 13 operations brain surgery seemed to be the easiest one for me! Guess it’s because nothing in a person with EDS is really normal! Sending you all huge & gentle zebra hugs! 😊

  2. You explained this so well! Thank you. I am so sorry you are both going through getting this symptom identified. After a 1/2 dozen EEG without episode, I too was overjoyed to have recorded the epsiodes we had video-taped at home for my doctors. In the end, they were called non-epileptic seizure (NES). I was referred to psych department by the Epilepsy team. My own 2 doctors knew better. Fortunately, I found there had been recent statements about NES made by two academic Dysautonomia centers. I had that diagnosis before teh EDS. Good luck. And I will be awaiting an update on this matter.

    • Thank you – I am hearing from a fair number of people who are experiencing similar episodes. I hope we all find some answers!

  3. So glad you got her in to have the EEG done! And doubly glad that something actually happened while she was all hooked up! I hope it leads to some answers, and some ‘fixes’ soon.


    xx S.

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