"Suffering the Slings and Arrows of Outrageous Fortune"

EEG Results

Last week, Em finally had her inpatient EEG monitoring. It wasn’t awful but it certainly wasn’t a whole lot of fun. I think I will do a post in the next few days recapping all the gory details of what that stay was like – since I have found that this issue is pretty common among EDSers. Today I will just focus on the results of that stay…

So, the “events” Em has been having are not epilepsy. That is good news, truly,  although in some ways, epilepsy treatment is more straightforward. The bad news is that they diagnosed her with Psychogenic Non-Epileptic Spells. We didn’t exactly love the neurologist and we certainly don’t love that diagnosis. I have been trying to avoid that diagnosis because I know how hard it is going to make Em’s life in the future. My fear is that, going forward, every new symptom will be chalked up to being in her head. EDSers already are viewed as fakers and crazies. We really don’t need this.

I still believe that a very possible cause of these events are complex migraines. That diagnosis fits at least as well as PNES (in my oinion, at least) but this neurologist disregarded it completely, because, well that is what neurologists do. In fact, she flat out said it was impossible because if Em was having migraines, it would have showed up on the EEG. When she said that, my BS meter started beeping like crazy.

Having looked it up after the fact, I was right to be skeptical – migraines are never diagnosed with an EEG and it is by no means certain that one would even show up on the EEG. They disregarded our descriptions of a headache afterwards and the visual symptoms Em experiences during the events. The doctor threw me a bone and promised to include the fact that these events are precipitated by a headache in her report. Which isn’t even true (the events themselves cause the headaches) but she ignored my objections.

So here is what we are left with: Either we accept this diagnosis and risk ignoring a real medical condition or we reject this diagnosis and risk ignoring a real psychological condition.  Both are risky and dangerous. And for sure, accepting the psychological diagnosis means rejecting the possibility that these episodes have any other explanation. We are on shaky ground with this. Remember Justina Pelletier? This diagnosis is under the same Conversion Disorder umbrella that was slapped on Justina when she was medically kidnapped. I would be lying if I said that doesn’t evoke some serious anxiety.

Our plan right now is to pursue both options. We will seek a therapist who might be able to address the emotional issues involved – for sure Em is dealing with more than enough to cause detrimental stress. Whether this will be specifically to address a conversion disorder or simply to help her learn how to cope with the crap hand she has been dealt, remains to be seen.

At the same time, we will pursue a headache specialist who can help us figure out if this is a type of migraine and hopefully provide some treatment.

The neurologist grudgingly acknowledged that we should find someone to treat Em’s headaches so I am going to take her at her word and do what I think is wise. I suspect they saw what they expected to see so I am reluctant to accept their findings without some skepticism.

Bottom line, I have a responsibility to advocate for Em and make sure she is getting the treatment she needs, whatever that may be and in spite of obstacles put in our way.

I will no doubt post more about this diagnosis in the near future and I will post about our general experience of the inpatient stay in case it might help others who are going down the same path. In the meantime, we are just trying to recover from our hospital stay and trying to absorb the results.



Comments on: "EEG Results" (5)

  1. This article about complex migraines with seizure like activity was in the paper in the UK today http://www.dailymail.co.uk/health/article-3610882/Terrifying-video-shows-woman-collapses-fits-NINE-times-day-bizarre-migraine-disorder.html. Your BS meter about the neurologist was right. Hope this helps. xx

    • THANK YOU!!! That video looks very much like what Em does. I was already mad but now I am well beyond “just” mad. I was told there could be no other organic cause of these events, so they HAVE to be psychogenic. I knew that wasn’t correct but was powerless to prove it at the time. Thank you so much for sharing this, it is definitely going to help me forge on and try to find the correct diagnosis. I can’t thank you enough!

  2. Have you checked her for yeast overgrowth. Overgrowth of yeast can cause seizures in severe cases. Try supplementing with Floraster probiotic to see if it would help. Check far end of her tongue for thick white stuff that won’t come off with gentle toothbrushing.

  3. Christy said:

    Hi there, I am sorry to hear all the things that Em is going through. I use to have four types of seizures and went through two brain surgeries in 1996. I must say I totally get how Em feels and what you must be feeling as her mother. I know for a fact that if Em didn’t have an episode while she was hooked up to the monitor it would not show any seizure activity. When I was about 12 years old I started seeing a new neurologist due to a move. He did an EEG and it was normal. He then told my mother I was faking it for attention even though I had been diagnosed at the age of five with Epilepsy. Thank God my family didn’t listen to his remarks and she took me to a different neurologist. My seizures only got worse with age, even though I was taking multiple medication, so I opted to have brain surgery at the age of 23. When I went through the surgery we didn’t know I had EDS but the doctors told us that while they were in there they had to do some repair work on my brain stem because it looked as if it was herniated. Now that I have been diagnosed with EDS my neurologist says that what they discovered during the surgery was a case of Arnold-Chiari malformation. Has she been checked for Arnold-Chiari Malformation? If there’s anything I can help you guys with please feel free to contact me.

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