Psych Update

[Rae1889]

So I have finished seeing a psychiatrist (a whoping two sessions)

Just as a recap, My first neuro (Dr. Fast) told me that he thought I had JME, then thought it was pseudo seizures, then told me it was epilepsy, just didnt have a type and it was hard to treat (got a hold of my EEG records from the ICU. It says basal frontal lobe epilepsy with temporal lobe seizures) So he sent me to the epilepsy clinic (which does not have an epileptologist, just nurses and rotating neuros. I happened to get Dr. Y, who did the video EEG (most of my leads were disconnected, from a previous CP and they never glued them back on) He said I was crazy, the seizures were from a psychological disorder and to move to minneapolis to get help (yeah right!)

so i talked to my family doc who was on my side and believes it is frontal lobe E, but could not continue meds or start new treatment as i was signed off by the neuro. So he decided to have me start tracking my blood sugar. For the last while I have been checking, I am consistently very low after a TC (2mmoL or lower) and only hit a high twice (one was 20mmoL) and he recommened me to a psychiatrist *who I thought was going to be nuts according to his reviews etc* just because the neuro told him to,

So I saw the psychiatrist, who turned out to be a decent guy. a man of very few words though. He went over my letter from the neuro and said "he is pretty adamant that these are psychological seizures" He did a small assessment on me (silly questions etc) and basically told me that he doesnt think these are psychological, the biggest reason being that I have them during sleep

SO he scheduled me for a second appointment and I went to it. he basically said he doesnt know how to help me because these are not psychological seizures. that i have no underlying mental illness and have a phenomenal thinking process for someone my age. He said he would write a letter to my GP and to Dr. Y and then thats it. He says he is very sorry because he cant prescribe anything for me, as I dont fall into his department, and he is worried there will be lasting damage from this (already after seizures I am pretty much paralysed on my left side from anywhere from half an hour to almost a day and a half. usually just my leg lasts the longest.) Im worried these are mini strokes, or even todds paralysis (the only other thing that came up in a search)

SO I am literally back at square one, with my seizures getting worse. I went 3 weeks without a TC. and then broke the streak . that was the longest i went since the ICU. now I gotta wait for my GP to call to get an appointment with him to see where we go from there. i feel so lost

 

[Cint]

Rae,

At least it is acknowledge by a psychiatrist that you're not having pseudo-seizures. Now those neurologists need to get their facts straight or help you find someone that can help you. I hope you're GP calls you today to give you direction. Can you give him a call and tell of your latest situation?

Hang in there.

(((HUGS)))

 

[Rae1889]

Sadly no. There is only a message system where I phone, leave a brief message and the front desk calls me to set up an appointment. And there is no use setting it up before he gets the letter as that would be a waste of time.

Sure the psych said they aren't pseudo but the neuro said they are. So I am stuck in the middle. If they aren't pseudo, and aren't epileptic they gotta be non-epileptic. Which means there must be a cause right (well there is always a cause, but non-e seizures should be easier to find right?) Well if we treat the cause the seizure should be gone right?

Who treats non-epileptic seizures?

 

[Nakamova]

Can you ask the psych doc to talk to the neuro directly? Y'know, actually use the phone? Or can the psych doc refer you to a different neuro, and send the records to him/her? Can you ask him to send you a copy of the letter he sense your GP and psych doc? That would be useful to have on file.

 

[epileric]

If they aren't pseudo, and aren't epileptic they gotta be non-epileptic. Which means there must be a cause right (well there is always a cause, but non-e seizures should be easier to find right?) Well if we treat the cause the seizure should be gone right?

Who treats non-epileptic seizures?

First of all pseudo-seizures & non-epileptic seizures are the same thing.

Also, when it comes to treating epilepsy knowing the cause if very secondary to treating it. My seizures were idiopathic until I was 39 and what was important was how to stop neurons from misfiring, not what's causing them to misfire. Even after discovering what the cause was, it had little to do with how they were treated.

As an example, take someone whose seizures are caused by a lesion- though many people have had surgery removing lesions the curative rate of such surgery is pretty low.

As far as what to do goes, I agree with Nakamova

 

[Rae1889]

First of all pseudo-seizures & non-epileptic seizures are the same thing.

I was under the impression that Pseudo-seizures implied you were faking the seizures, Epileptic seizures were electrical, psychogenic seizures were caused by a mental illness and non-epileptic seizure were cause by something physical like diabetes or alcohol.

Also, when it comes to treating epilepsy knowing the cause if very secondary to treating it. My seizures were idiopathic until I was 39 and what was important was how to stop neurons from misfiring, not what's causing them to misfire. Even after discovering what the cause was, it had little to do with how they were treated.

but what i am asking is that if its not epilepsy (as the neuro says) then it has to be something. I totally think that finding the cause is a priority. The cause could be a tumor, and removing that could be life saving. The cause could be diabetes, and controlling that stops the seizures. The cause could be a severe infection, and curing that stops the seizures.

Could be a pressed or pinched nerve in the neck etc. fixing it can cure the seizures. I understand that something like a lesion or other brain damage doesnt necessarily mean a cure, but when the cause is NOT that, then finding it can really help alot.

I know I have brain damage from my bike accident. but I also know that my blood sugars get really low at times. I just want to make this stop. So if they are deemed non-epileptic, who do I see to stop them? I find it pointless to take anti-seizure drugs to stop the seizures that could be stopped by taking meds to fix the problem.

 

[epileric]

Now I"m confused. I thought your most recent visit with your psychiatrist deemed you had not psychiatric issues hence the only option left is neurological (epileptic) seizures.

The seizures might be caused by a pinched nerve or some such thing but I don't believe that fixing that necessarily means fixing the seizures.

Also, Many years ago a registered nurse showed me how low blood sugar is a common occurrence after a seizure in most people. I don't think that is something to worry about though it is good to be aware of.

. So if they are deemed non-epileptic, who do I see to stop them? I find it pointless to take anti-seizure drugs to stop the seizures that could be stopped by taking meds to fix the problem.

I had trouble understanding what you're trying to say there.

 

[Rae1889]

LOL okay the last sentence was way too general and now i cant remember what i was trying to say,

"Now I"m confused. I thought your most recent visit with your psychiatrist deemed you had not psychiatric issues hence the only option left is neurological (epileptic) seizures."

yes, I do not have any psychiatric issues. but epileptic isnt the only option left.

the options are faking (which im not) epileptic (which the neuro says they are not) or non-epileptic (caused by diabetes etc)

 

[Beanogirl]

I'm new here so sorry if you already answered this in an old post but can you find a new neurologist? Maybe do another video eeg. When I had my first eeg nothing showed up. I went into the hospital and it took days for them to get anything. If they would have sent me home after the first 2 days nothing would have showed up. I hope you can get some answers. I'm just starting this journey and I know how frustrating it can be.

 

[Cint]

yes, I do not have any psychiatric issues. but epileptic isnt the only option left.

the options are faking (which im not) epileptic (which the neuro says they are not) or non-epileptic (caused by diabetes etc)

Ok. So if the psychiatric issues are ruled out, and you definitely aren't faking the seizures plus they're non-epileptic (maybe caused by diabetes), then have you been to a real endocrinologist? I know you have been keeping track of you're blood sugar levels, but has it actually been diagnosed as diabetes or hypoglycemia?

I have epilepsy and Type 1 diabetes and sometimes for me, when my blood sugar drops, like it did just the other day, it does somewhat feel like an aura of a seizure, but I know the difference because of the suddenness and I break out in a sweat. With an aura before the CP seizure, it isn't so sudden for me and I don't really have that "faint" feeling. So I can see where doctors have difficulty making a correct diagnosis.

Symptoms of a Diabetic Seizure

A diabetic seizure can be caused by high blood sugar or low blood sugar. Mixed signals from brain cells cause seizures similar to those that are caused by a head injury or a high fever. These seizures can lead to coma, convulsion or death if untreated, but there are ways to tell if someone is experiencing a diabetic seizure in time to seek medical assistance.

Common Symptoms
Common symptoms of diabetic seizures are similar to symptoms of epileptic or other types of seizures. Muscles can twitch or jerk and tighten up. If someone having a seizure is holding a cigarette or a drink, you may not be able to remove it from their hand when their muscles become rigid. Body parts can become numb, and the person having the seizure may complain of dizziness, sweating, fatigue and headache.

 

[Rae1889]

It hasnt been officially diagnosed as diabetes or hypoglycemia. But I figure the results would be much worse by now if it was either one, as I dont eat or drink anything immediately after a seizure to even out blood sugars. Once I am coherent enough to talk etc, I'll have some coffee or juice or water. whatever i can handle that i wont vomit up right away,

I have been to 2 neurologists, and the process of finding a third requires jumping through some hoops.

 

[Loopy Lou]

It might be worth getting checked for diabetes then. I'm sure its just a few blood tests and a urine test, and if you've been keeping track of your blood sugary then you'll have that history too.

 

[stilldancing_98]

I am so sorry for what you are going thru. So you have not seen an epileptologist?

 

[Endless]

Oh, man. What a long road you've had, Rae. You have to be exhausted with doctors.

I'd think if you suspect diabetes, your primary care physician could handle looking into that for you. Mine gave me a free meter and strips, and for a couple of weeks had me measure my blood sugar 2 hours after I ate, and 2 hours before. She said it shouldn't go below 50 before meals or beyond 120 after a meal. And it didn't. (was a little under 100 after meals, 70 before meals)

Anyway, ask your family doc to help you with the blood sugar thing. It'll be one more thing you can either confirm or rule out.

 

[marlena23]

doc says non epileptic "episodes" are genuine

When I was diagnosed with epilepsy as well as non-epileptic seizures I became very upset, I thought my doctors were implying that I was faking a disorder or was being labled crazy. This is NOT the case. The way it was explained to me is the seizures are genuine. They look and act the same as real seizures but cannot be recorded on an EEG. These "events" are something I do not have control of just as a tonic clonic seizure. You never know when it will happen, it just does. With that being said, here is a article I found explaining the "episodes".

As many as 40% of patients evaluated at comprehensive epilepsy centers are diagnosed with nonepileptic seizures. Nonepileptic seizures resemble ictal events but are behavioral manifestations of psychological distress that lie outside the patient’s awareness and conscious control. Psychological trauma, closed head injury, family distress, and ineffective coping are key risk factors for the development of nonepileptic seizures. Neuroimaging studies of depression, anxiety, and somatization are helpful in understanding the biological substrates that may underlie nonepileptic seizures. Research suggests that disruptions in subcortical-frontal circuits reflect the neurophysiological underpinnings of nonepileptic seizures. These findings support hypotheses regarding frontal lobe dysfunction as a primary neuropsychological deficit in these patients. Increased understanding of the relationships between neurological mechanisms of nonepileptic seizures and psychological issues will ultimately improve treatment efficacy and enhance patients’ cognitive and emotional functioning.
I hope this helps...and I hope you get the answers you deserve. I've been bouncing back and forth between docs for 2 years. Good luck

 

[Rae1889]

I am so sorry for what you are going thru. So you have not seen an epileptologist?

Manitoba does not have an Epileptologist. Just basic neurologist that specialize in other areas

Anyway, ask your family doc to help you with the blood sugar thing. It'll be one more thing you can either confirm or rule out.

I havea meter and strips and have been checking my blood sugar daily for a long time already. I notice my blood sugar is low after a seizure, (2mmol or lower) and have only spiked into the 20s twice. The highs did not cause a seizure, just the lows after one. (not sure if it was low before the seizure)

Nonepileptic seizures resemble ictal events but are behavioral manifestations of psychological distress that lie outside the patient’s awareness and conscious control.

I wasa always told that non-epileptic meant that the seizures were physical in origin, not psychological. psychological seizures are psychogenic seizures.

 

[Cint]

I'd think if you suspect diabetes, your primary care physician could handle looking into that for you. Mine gave me a free meter and strips, and for a couple of weeks had me measure my blood sugar 2 hours after I ate, and 2 hours before. She said it shouldn't go below 50 before meals or beyond 120 after a meal. And it didn't. (was a little under 100 after meals, 70 before meals)

Anyway, ask your family doc to help you with the blood sugar thing. It'll be one more thing you can either confirm or rule out.

I do have Type 1 diabetes, along with epilepsy. My Blood Sugar has been as low as in the 40's and at times as high as 300. I take insulin shots 5 times a day and check my glucose levels when I wake, at each meal, at bedtime and after exercise. I had a check-up with my endocrinologist just the other day and he wants me to not have any lows, (he doesn't want mine to be below 80) because he knows of my seizures and knows that the low blood sugar could lower my seizure threshold. But so far, I haven't had any seizures due to hypoglycemia. I feel light-headed and break out in a sweat and my lips go numb when I'm hypoglycemic. I just know the difference now. And IMO, if someone suspects Diabetes, they need to see an endocrinologist.

 

[Endless]

I think non-epileptic seizures come in two types:
http://en.wikipedia.org/wiki/Non-epileptic_seizure
http://www.epilepsyfoundation.org/answerplace/Life/adults/women/Professional/nonepileptic.cfm

- Physiological non-epileptic seizures (from a physical source)
http://en.wikipedia.org/wiki/Non-epileptic_seizure

- Psychological (psychogenic) non-epileptic seizures (from a mind source)
http://www.epilepsy.com/articles/ar_1112967056

The list of possible sources for physiological non-epileptic seizures is long and rather exhausting, but it doesn't have everything in it. I have no idea how they'd diagnose most of that stuff - I guess it is symptom-based, then some tests, like everything else.