NES - Non Epileptic Seizures

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douglas

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Hi all, I am new to the forum and excited to participate. I am sure the exictement will wear off but while its there -- i will throw this out there.

How familiar are people with NES diagnosis? I work at a university and I sometimes search the academic research journals for epilepsy articles and read them in the hopes of finding info that might help me. (so far no luck - most are way over my head)

Anyways, I came across this one research paper on NES diagnosis and the strains of diagnosis on the medical community. Basically, the jist of it was, for people that have un-explained seizures (multiple MRI's and EEG's have been done over many years and they show nothing) , the neurologysts actually believe the seizures are psychological and the patients should be going for therapy but many are not diagnosing it because of problems associated with NES diagnosis.

Will try to find it and post the link if there is interest.

But just wondering if anyone got an NES diagnosis?
 
My daughter was given this diagnosis at a teaching hospital here in SoCA.
It unfortunately was the incorrect diagnosis, and we have since been able to pinpoint her seizures to be caused by blood sugar imbalance. Proper nutrition seems to be improving her health.
 
RobinN said:
My daughter was given this diagnosis at a teaching hospital here in SoCA.
It unfortunately was the incorrect diagnosis, and we have since been able to pinpoint her seizures to be caused by blood sugar imbalance. Proper nutrition seems to be improving her health.
Click to expand...

How did you manage to pin point it to that? Did something come up on the blood work?

I read about the relation between nutrition and blood sugar and epi and i had my doc do all the blood tests, but she said nothing out of the ordinary.
 
Hey, Douglas.

The one-time blood test for blood sugar probably wouldn't uncover this. But a 5-hour glucose tolerance test would. Ask the doc for one.
 
When someone appears to have seizures, even though their brains show no seizure activity, they are diagnosed as having pseudo seizures which basically means they look like a seizure but aren’t one.

Seizures that are psychological in origin are often called psychogenic seizures. These seizures are most likely triggered by emotional stress or trauma. Some people with epilepsy have psychogenic seizures in addition to their epileptic seizures. It’s a legitimate seizure and should be treated that way, but it is not caused by a problem in the brain.

Then there are physiologic nonepileptic seizures which can be triggered by some sort of change in the brain — typically a change in the supply of blood or oxygen rather than electrical activity.
 
douglas said:
How did you manage to pin point it to that? Did something come up on the blood work?

I read about the relation between nutrition and blood sugar and epi and i had my doc do all the blood tests, but she said nothing out of the ordinary.
Click to expand...

Her very first blood test showed her fasting blood sugar to be at 47. Quite low, but no one seemed to think that was a problem. I certainly didn't know at the time what to be looking for, so I followed the directions of Neurologist #1 and put her on medication. The next 1.5 yrs was a downward spiral.

After taking her off of medication, and working with vitamins, minerals, neurofeedback and nutrition, I kept a careful journal. I saw that many of her seizures were happening at a similar time of the day. Not all, but many.

I asked for a glucose tolerance test and was told that it wouldn't show us anything worthwhile. It wasn't requested by the doctor. I should have paid out of pocket, but I still realize that I am not a doctor and trusted this pediatrician. Then.... she had a seizure and her blood sugar test was tested by the EMTs and it was at 32. They rushed her to the hospital, and the ER doc told me this test needed to be done. So with his request the doctor had to put in for the referral.

She only had a 3 hr test, and her blood sugar was at 50 by the third hour. I had to assume what it would be at the four or five hour mark, and I took matters into my own hand. I have been told by Neurologist #3 that she does not have any knowledge about hypoglycemia & seizures but can offer us another medication. A newer one.

I continue to work with nutrition, and supplements. The neurofeedback has been discontinued, because we are seeing results with the route that I have found works. I do have a referral for Neurologist #4 but I have not called for an appointment yet. We have worked with a Nutritionist/MD that has confirmed all the research I have done, and I am assured that we are on the right path. He even said not to discontinue the current supplements she is taking. He said that of course in a couple of years when she no longer is having seizures that we want to replace them with natural food products. But for now, they are keeping her numbers within the "norm" and that is a good thing.

The help and research I have done has all been via the internet. Doctors we have been referred to have not supplied any of the information I have learned to this point. Most shrug their shoulders and ask what I want them to do, however many have given the wrong advice.

I do want to point out that many times I have been told that nothing is out of the ordinary. It was little things that caught my eye, and made no sense. It was witnessing what was occurring in real life, and making the notes, and leaving no stone unturned where I found my answers. Perhaps it was being ignorant of what the "norm" is and instinctively knowing something was not right. I have learned to trust my instinct ... always.
 
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Robin,

I can't believe that doc wouldn't give Rebecca a 5-hour glucose tolerance test at first. He really let you down. 47 is way too low, and should have gotten a response from him right away. I would have fired him and found another doc ASAP. Like I did when my first neurologist said there was nothing wrong with me, I just had a hormonal problem. Adios, doc.

Doctors in general drive me nuts, though there are some good ones out there.

I'm glad you did take her test results seriously and took the needed action. And it's lucky you had the energy and drive to do so. You are a good mother.

I have to say about 50% of what I've learned about epilepsy has come from this forum. Another 45% from the internet. About 5% from my doctor. And he's considered one of the best epi's in the region. I think he is, when it comes to diagnosis and AED's, but not so much on patient education and alternative treatments. He won't even talk supplements with me.

Oh, man. Don't get me started. I wish there was a doctor who knew a lot about epilepsy AND supplements and alternative treatments. Haven't found her/him yet.
 
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thanks. very inteesting post and has got me thinking again.

i am still convinced there must be some other way than just taking AEDs for the rest of your life. i even asked for really "out there" stuff like therapy groups or yoga groups or some naturalpaths who specialize in treating epi.. but the doc and neuro sort of put a stop to that and convinced me that i have too much to lose if i dont go no meds. maybe will start bugging them again about it.
 
Endless - at the time of the first blood test, I didnt' know what was normal and what wasn't.

Douglas - another route that can be taken is to go on the minimum level of medication, work on your own with alternative therapies, and then after being seizure free for a period of time, ask the doctor to very slowly eliminate the medication.
 
Hi Douglas. I have just finished a 3 day siezure study and have been diagnosed with pseudo siezures. Twelve episodes but clear EEG reading. It was also thought that I am extremely sensitive to any anti- siezure medication. I had a meningioma tumour removed 2008 which was located in the frontal lobe. (close to the emotion centre). I am very happy to find some info on this condition linked to this web site. A psychiatrist came to see me in hospital and got on the 'wrong side of me' very quickly. I, like you am now looking for answers and support as this has left more questions than answers. I am going to go to an MD who also works Naturopathically to get some blood work done to look at some possible reasons for this condition. I own up to having had some pretty emotionally devastating situations in my life which I thought I had worked through. The worst thing is the feeling of isolation and having friends and family label me with a 'mental disorder'. At one stage I was told I had Post Traumatic Stress Disorder. Feeling really sad and flat of spirit at the moment so know how you feel. (Ps....have been take off Epilem and also have to go through that withdrawal to add to it.) Myoclonic jerks still happening, vile headaches and uncontrolled emotional outbursts. Got lots of tissues though :)
 
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Robin,

You make a good point - I don't know what my blood tests mean half the time, either. I've looked for a comprehensive blood test level explanation site and haven't found one yet. Ideally it would have what each test is and what they are for, what sort of low levels mean as well as out of range, and what problems or diseases low or high levels are linked to. Also which tests should be repeated to ensure they are really out of range, not jsut a daily variation. Such a site would help us be better "consumers."
 
there is not much info on this in America, very saddening to me. I had this happen and most of you know as I have explained. It is really nice to know I am not alone in being told the same things after the doctors witness a seizure. Then the family doubts, then you doubt... The cost alone for that diagnosis was high, I feel I should re evaluate this, but really can't afford to, as I have bills from two years ago.

I am taking vitamins now for zinc intake and magnesium.
I am not on any aed's just meds for depression/adhd
 
Hi Matchu,
I am interested to know if your siezures are more controlled or gone since you have been taking magnesium supplements. A blood test has shown that I am very low in magnesium and my seretonin levels are also way low.
Thanks for your post....we all learn together.
 
thanks so much for this post and your responses :)

I, like some of you, have had video monitoring with nothing - except a little bit of epileptic activity although not which explained the seizures.
I've seen different psychologists and psychiatrists under the diagnosis of NES, but they can't pin it down to anything and I haven't had any traumatic situations that may suggest the activity.

I'm on magnesium which seems to be helping but my blood tests say it's now in the normal range so not really sure where to go from here.

So glad I'm not alone :) I'd be interested if you had any advice!
 
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