Hello i'm Matt.

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I'm Matt. I have recently been diagnosed with pseudoseizures. I have panic attacks and anxiety disorder, which I've developed in the past two years but they seem to have got worse in the last three months, just before the seizures started. The first four times I had a fit, my wife called an ambulance and each time I was sent home and told it wouldn't happen again. Then, they diagnosed me with epilepsy, then they told me I was 'faking it' now they have settled on pseudoseizures.

It's strange, embarrasing, and i'm scared - and most of the people around me think i'm insane!

There doesn't seem to be much information out there, I have many questions and no answers so any information you have or if you know how I feel, please reply.
 
Hi Matt :hello: Welcome to CWE! You came to the right place for support, encouragement, and information. I love this forum. The people are great and the information available around every corner is amazing. I learn something new each time I visit.

Sit back and make yourself at home. Take some time to read through some of the forums. It sounds like your journey is just beginning. I know this is a scary time. I would suggest looking into alternative therapies and the role diet and nutrition can play in seizures. Doctors don't typically discuss this type of information with you and it can help more than people realize.

It's really good to have you here :)
 
Hi Matt, welcome to the forum. :hello:

There must be something in the water out there in California. Your story sounds an awful lot like Robin's/Rebecca's.

Whether you indeed have PNES or epileptic seizures is just splitting a hair in the big picture. You are still experiencing seizures.

Supposedly, PNES do not respond to AEDs. You might have better luck with diets, supplements, neurobehavioral therapy techniques and/or neurofeedback.

Since you are recently diagnosed, I'll ask ... are you familiar with all the different types of seizures - such as simple partial seizures specifically? Many folks new to epilepsy discover that they were experiencing undiagnosed seizure activity for years after they learn more about the different seizure types/experiences.
 
Hi Matt! Welcome to CWE. Feel free to ask questions, vent in the padded room , or just chime in. This is a really friendly group. As Bernard suggested, check into the alternative treatments, and check out the Epilepsy 101 thread. There's some great info on different kinds of seizures there. :)
 
Welcome Matt

It seems a lot of people (including myself) were told that they were faking it. If nothing else you're in good company.

Make yourself at home & look around.
 
Hi Matt

Welcome to CWE. When you first come in you will see a lot of words, dealing with epilepsy. Just press on the one you want and you will be there. Or just go through the forums and you will find something that will apply or interest you.

I was diagnosed with epilepy at 6 years old. When I was 64, I was told by a neurologist that I did not have epilepsy. I was told I was faking my seizures and that I was faking it. This was after over the years I had 2 status epilepsy and tonic clonic seizures. I fired the neurologist.

You are not insane Matt, they are. There is a topic on pseudoseizures and I recommend you look it up. You are in the right place.
 
Welcome Matt
Can I ask where you went and received that diagnosis?

We have had a mix of information, but Rebecca's therapist that sees her weekly has been a lifesaver for me. She has always confirmed that there was something biological happening. Rebecca's diagnosis of PNES was after a 20 min interview. It was also during a time period when Rebecca had memory loss. They thought I was an overprotective parent.

Hang tight here, I think you will find some answers that you can take to a new doctor and discuss your options.
 
Hi RobinN,
I live primarily in New Zealand (9 months of the year) so all my testing was done at North Shore Hospital, Auckland. The EEG showed I was having non-epileptic seizures.
I have been seeing a therapist in Auckland since I started having panic/anxiety attacks two years ago, and because of this I was diagnosed with having pseudoseizures.

I agree that I should discuss some new options with my doctor, I'm not keen on going on any medications though.

Thankyou everyone for making me feel welcome. I will deffinately be posting again, and it's great to finally find people I can relate to!
 
Matthew said:
I'm Matt. I have recently been diagnosed with pseudoseizures. I have panic attacks and anxiety disorder, which I've developed in the past two years but they seem to have got worse in the last three months, just before the seizures started. The first four times I had a fit, my wife called an ambulance and each time I was sent home and told it wouldn't happen again. Then, they diagnosed me with epilepsy, then they told me I was 'faking it' now they have settled on pseudoseizures.

It's strange, embarrasing, and i'm scared - and most of the people around me think i'm insane!

There doesn't seem to be much information out there, I have many questions and no answers so any information you have or if you know how I feel, please reply.
Click to expand...

:hello: Matt

Welcome to CWE, and sorry you are having to undergo
all of this. But I am curious from reading your post above.

1 ) Has an EEG ever been performed?

2 ) To me you may be experiencing Simple Partials, but has
a Neurologist ever evaluated you?

3 ) It is not unusual for people with Epilepsy to experience
panic or anxiety, especially just when a seizure happens.

4 ) To the fact you have had these experiences and it had
progressively worsen. Are you on any medication(s)? There
are medication(s) that can actually trigger seizures!

5 ) You may or may not be having side effect of medication
or medications if you are on it / or / having allergic reaction.

6 ) By any chance in your family background did any one
have seizures / epilepsy? Or was that "kept hidden"?

7 ) Did you ever sustain any head trauma or TBI (Traumatic
Brain Injury)?

8 ) Does your family have notorious health problems? Even
cardiology / pulmonary can have an influence.

9 ) Do you drink alcohol or use recreational drugs? They can
invoke / provoke seizures.

10 ) Food Allergies - such as MSG, can be a major problem
and bring on health issues

There are so much more questions I can add on to here,
and I strongly recommend that you speak with your PCP
(Primary Care Physician) and go over through it all and
cover all the bases; I am a big fan of 2nd opinions.

"Pseudoseizures" is an old terminology that is hardly even
used anymore except by "old" Neurologists and Physicians
that are not up to date. They have newer terminology these
days and better methods in handling such matters.

And for your information:

Just because your Head Scans are normal, does not
mean anything --> there are many people who have
Epilepsy and have normal Scans.

You can have EEG's performed and come up normal,
and that is because they did not capture it at the
"right moment". A long term monitoring or a video
long term monitoring on digital montage EEG would
be the best avenue to take to determine the diagnostics.

Misdiagnoses is quite common.

Frontolobe Epilepsy aka FLE is very difficult to capture
on EEG. Some seizures are difficult to capture on EEG
period - because it is too deep in the brain, for the
EEG electrodes on the scalp of the head only can cover
so far; hence why they have "invasive" methods of EEG
which requires grids, but now they have MEG (special
type of EEG) which is an advanced technology - a
great improvement but very few Hospitals/Universities
have this available. Another option if LTM video EEG
isn't an option is to request a Short Term Digital Montage
EEG - which can be 1 hour, 6 hours, or overnight and
can be performed at Sleep Apnea Centers or at Hospitals
via Inpatient or even the Outpatient Clinic (if that is
available).

The FLE is the most troublesome type of Epilepsy to
"catch" (record) on EEG, which in turn result many people
being misdiagnosed.

Hope all of this helps ...

Plus if this be of any further assistance, you can always
click on the Epilepsy Foundation of America's Logo below
and obtain more information there at the website and
even phoning them and ask questions directly and they
would be able to direct you to the California Epilepsy
Foundation in your area, as there are several of them
located over there.
 
One more thing ....

MATT:

You just implied you spend 9 months in
New Zealand ... and there is another route
you can obtain assistance that is close by
you by also clicking on the banner below
which is in Australia and the other is New
Zealand



 
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I have been what you went through, but at age 10! I went through it just recently at age 20.

Time changes everything. They always have to narrow things down, and if it does mean that they think you are "faking" it we have all been through it. Mine were just borderline that they had no idea.

Now I am stable with medications. It took years of tweaking and growth, but I am finally back to a "normalish" state in life.

If I can go through it you can, so can anyone!

This place is a great resource and everyone is here for you always.

<3 jackie.
 
Ah! Being misunderstood...

Matthew said:
I'm Matt. I have recently been diagnosed with pseudoseizures. I have panic attacks and anxiety disorder, which I've developed in the past two years but they seem to have got worse in the last three months, just before the seizures started. The first four times I had a fit, my wife called an ambulance and each time I was sent home and told it wouldn't happen again. Then, they diagnosed me with epilepsy, then they told me I was 'faking it' now they have settled on pseudoseizures.

It's strange, embarrasing, and i'm scared - and most of the people around me think i'm insane!

There doesn't seem to be much information out there, I have many questions and no answers so any information you have or if you know how I feel, please reply.
Click to expand...
Hia, Matt! Along with everyone else, I welcome you to CWE! There's nothing worse than being called a "fake"! Doctors are human with as many flaws as the rest of us but it's difficut to have compassion for them when it comes to "labeling" us and possibly compromising our health. I've been misdiagnosed for years for a physciatric disorder. Finally, it's settled. I know how to manage. You know how your body feels. No one can pop inside and say "No. You don't feel this way"
.
Feel accepted and at "home", here. No one will think you're strange or insane!!! The more you read our posts the more you'll get settled in and find those with whom you can identify through their stories and questions which you will, no doubt, relate to. The Kitchen is a good place to go to let it all hang out and chat with others about our complicated condition. And before you know it you will befried fellow sufferers. You'll no longer feel "left out in the rain". I see that brain gave you allot to explore! So, that's a begining...
 
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Matthew said:
Hi RobinN,
I live primarily in New Zealand (9 months of the year) so all my testing was done at North Shore Hospital, Auckland. The EEG showed I was having non-epileptic seizures.
I have been seeing a therapist in Auckland since I started having panic/anxiety attacks two years ago, and because of this I was diagnosed with having pseudoseizures.

I agree that I should discuss some new options with my doctor, I'm not keen on going on any medications though.

Thankyou everyone for making me feel welcome. I will deffinately be posting again, and it's great to finally find people I can relate to!
Click to expand...

It is all in how it is interpreted.
My daughter's first EEG supposedly showed positive seizure activity.
Second EEG didn't show anything.
Went to a new teaching hospital and had an EEG and an VEEG and was told that the first doctor didn't know how to read the test. That it did not show anything.

Learned that she would have to be having a seizure during the test to show activity. Also some seizures are too deep to show up on this test.

Best is to have someone witness it, that has a seizure background. There seems to be some differences in them, that might be observed. In fact, someone suggested that a friend videotape an episode with a cellphone, for the doctors to view. I am lucky, that we have had a police officer on campus and the EMTs that are positive that Rebecca's are not PNES.

However, taking a step back.... one or the other, they are seizures. I really hate the labels. Something is amiss in the body. My personal approach is to hit the nutritional side big time. It is known that nutrition is a huge factor in seizures and emotional / psychological / neurological disorders. Sure is easier to attack it from this approach than to get on the pharmaceutical merry-go-round.

Hopefully you are keeping a journal. I am also sure that exercise, and relaxation techniques are other positive alternatives to try.
 
Thank you RobinN and cinnabar. I am learning a lot about pseudoseizures here. I have never been diagnosed with them. The last time I was in the hospital, the neurologist said I was faking my seizures. Then she got mad because I was having tremors in my head. I did not even know it. I fired her. Those were the words I used, "You are fired." I never saw her again and was glad about it. I have had epilepsy for 59 years. Did I fake all of those years. My other neurologists knew I had epilepsy. Matt, you are a welcome addition and please post more.
 
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