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I did previously mention this symptom else where, but thought it deserved special attention as it isn't typically associated with the Classic PANS/PANDAS form, and just because of how dreadful it is...

For the past 4 or so years, during an acute exacerbation, one of the first signs of relapse is falling into a transient trance state (or staring spells). The episodes are usually preceded by a 'warning' - an abrupt wave like sensation originating from behind the eyes, resulting in a loss of attention and concentration.

Now, here's where the matter gets more complex. My brother has an ASD diagnosis and a clinical history of suspected epilepsy - As a child he suffered a febrile convulsion and a fit, and was rushed to A&E on numerous occasions.

After successive investigations involving EEG and a short course of anti-convulsants, the neurologist concluded that the line between ASD and epilepsy was a blurry one and ruled that the abnormalities shown on EGG could be better accounted for by AS.

Up until a few years ago, I never experienced any of these worrying spells - the principal symptoms were always restricted food intake, severe anxiety (OCD) with behavioural regression.

My PCP will never entertain the idea of epilepsy and I can't say there is a loss of conciousness during these spells - I'm still very aware of my environment.

My question is can this be a sign of untreated PANS/PANDAS as new symtoms evolve with every exacerbation, or is it more likely to be psychogenic in nature? 

The reason why I don't believe it's seizure related is because there is no loss of conciousness, or secondary behaviour, like lip smacking...

Whatever it is, it has a dementia like quality to it... very worrying 🙁 

Hopefully some of you can relate... 

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LIke many of your other symptoms, Hitman, yes, we can relate.  And yes, I believe your "zoning out" is PANDAS/PANs related.  My son used to do that almost constantly.  Like he'd just blank out for a moment, be complete disassociated from where he was, what he was doing, what someone had just said to him, etc.

There are a couple of kids here, at least, for whom anti-seizure medications have been successfully prescribed, even though there's no blatant evidence of actual seizure activity, reason being, some seizures are believed to be related again to glutamate dysregulation, and some of the anit-seizure meds help with that.  My DS, for instance, was prescribed lamigotrine (non-generic name being Lamictal), and it was very helpful for him.

Interestingly enough, additionally, his prescribing psych told us that Lamictal was used off-label for both some OCD issues as well as autism spectrum disorders.

Perhaps something like this might be a missing piece of your puzzle?  I would pursue glutamate modulation, whether via pharmacological or "natural" routes.

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Yes, thanks for that! I have previously suggested the use of lactimal to my psych when presenting information regarding dissociation, blank spells, and Dr Daphne Simones research and treatment in to depersonlization in New York, as yes, it acts on the glutamate system.

His response was that he restricts its use only to bipolar disorder for it's mood stabilising property, and wouldn't be happy to prescribe it any other condition.

I'm so sure your right about glutamate dysregulation, but I can't find a single mainstream Doctor willing to listen.

it looks like I'll have to follow the natural route...

 

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I've known a few kids on the spectrum that have these staring spells. My understanding is that they are a type of seizure. We called them staring seizures. No loss of consciousness. Just complete zoning out with eyes open. I am unaware of any connection to PANDAS, but I just may not be familiar enough with PANDAS issues. I recommend you consult a neurologist. 

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50 minutes ago, SuzanneR said:

I've known a few kids on the spectrum that have these staring spells. My understanding is that they are a type of seizure. We called them staring seizures. No loss of consciousness. Just complete zoning out with eyes open. I am unaware of any connection to PANDAS, but I just may not be familiar enough with PANDAS issues. I recommend you consult a neurologist. 

Hi Suzanne,

I've only developed them since about the age of 21. They are episodic, but only occur during periods of acute exacerbation with an influx of other symptoms.

I have heard of simple focal or absence seizures, but I'm trying a little harder to find a unifying diagnosis that encapsulates the full nature of my experiences.

Could it be that this symptom dissipates with resolution of all other symptoms? Could it be part of PANS?

Also as time goes on, is it possible for more sinister symptoms to develop due to resultant brain damage? I know there are no known longitudinal studies and profiles in adult patients that have carried symptoms since childhood, but  anecdotal reports in the literature would suggest symtoms remininscent of severe mental illness may well develop! 

I have asked my PCP about EEG work up, but he suggested that its very unlikely I have epilepsy. Who knows? 

 

 

Edited by Hitman3161
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2 hours ago, bws1565 said:

Hi, 

I can definitely relate to these staring spells.  They could be absence seizures.

They can also be related to Bartonella.  Have you ever looked into tic borne diseases?  

 

Hi bws,

Cheers for replying!

Possibly yes, but they only occur during an exacerbation of symtoms, if there was any epileptiform activity you would think this would be entirely independent, unrelated, and occur only arbitrarily - even in times of wellness.

I have had an antibody test for both bartonella and lyme which came back negative, so I have looked into this thanks.

Haha, to put it as gracefully as I can - I have had MANY reactionary social disruptions, and been through a lot of social trauma as a result of struggling so much on the inside and feeling misunderstood, so it may be a psychosocial matter (PTSD) - although there was the same general pattern of illness long before. And to be honest most of the trouble I've been in I've  brought on myself, either for being too selectively mute or too emotionally labile, long story! Lol

On the other hand, there is such a sudden acuity in onset interspersed with all the other symtoms, that makes me kinda believe it's all related somehow - for want of a better phrase I literally become a 'brain fart!'

Maybe others have experienced this and somehow seen it resolve with effective immunotherapy.

I'm glad you can relate, but I get how troubling it is... It's awful!

I don't really know, I just hope it ameliorates with everything else...

 

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This is very interesting too...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4340647/#!po=45.7447

It describes a case study of a young patient with comorbid diagnoses of PANDAS and Kleine-levin syndrome ( extraordinarily rare).

it mentions him experiencing staring spells... 

And to quote "Irritability, oppositional behaviors, depersonalization and derealization, and mania may also present in both KLS (Reynolds et al. 1980; Gillberg 1987; Sagar et al. 1990; Arnulf et al. 2005, 2008) and PANDAS (Swedo et al. 1998;"

The thing is... when you follow those sources there is no mention of the aforementioned symtoms occurring exclusively as part of pandas.

But then again, I've heard another author say the longer PANDAS goes untreated the more it can present it self as a schizophrenic like illness...

I don't want to scare you or anybody, as everydody is different with regards to an underlying 'cause' for their condition - but it would definitely be relieving to here if this 'zoning out' business responds to treatment...

I just hope we both manage to get rid of them! :)

 

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