10 replies to this topic

[purpley]

I'm curious to hear from folks who were misdiagnosed at some point as having factitious seizures (aka, pseudoseizures, psychogenic seizures, functional seizures, non-epileptic seizures, or just plain "faking" seizures or "all in your head") or similar things by a neurologist due to episodes of cataplexy. I'd especially love to hear from folks who had video EEGs done, but all stories are welcome.

There are lots of reasons neurologists get it wrong. It's so rare to collapse to the ground with the inability to speak, retaining full consciousness throughout, with no confusion afterwards, that neurologists who don't know about cataplexy will be highly suspicious from the beginning. Seizures and syncope (fainting) are much more common than cataplexy, and sleepiness doesn't tip the doctor off because it's a very common complaint for people in general. Narcolepsy has no findings on EEG or brain imaging, which are the staple tests for neurologists. Plus, people with cataplexy may have enough control to sink to the ground slowly without getting hurt, which doesn't happen with seizures or fainting, and looks like "hysteria," especially when the trigger is something that is stressful, like a fight with someone.

Strangely, there are very few reports in the neurological or psychological literature about this, and even a recent popular review article on things that are mistaken for pseudoseizures doesn't include cataplexy. If any of you would be willing to let your stories be told as part of a case series -- with all your identifying details changed, of course -- I think I can help change that, either through a journal article or a presentation at a medical conference. No fame or glory involved, but at least the doctors who read or hear it won't miss the diagnosis the next time they see it! If you're interested, just post here and let me know, or send me a message.

[Hank]

I'm curious to hear from folks who were misdiagnosed at some point as having factitious seizures (aka, pseudoseizures, psychogenic seizures, functional seizures, non-epileptic seizures, or just plain "faking" seizures or "all in your head") or similar things by a neurologist due to episodes of cataplexy. I'd especially love to hear from folks who had video EEGs done, but all stories are welcome.

There are lots of reasons neurologists get it wrong. It's so rare to collapse to the ground with the inability to speak, retaining full consciousness throughout, with no confusion afterwards, that neurologists who don't know about cataplexy will be highly suspicious from the beginning. Seizures and syncope (fainting) are much more common than cataplexy, and sleepiness doesn't tip the doctor off because it's a very common complaint for people in general. Narcolepsy has no findings on EEG or brain imaging, which are the staple tests for neurologists. Plus, people with cataplexy may have enough control to sink to the ground slowly without getting hurt, which doesn't happen with seizures or fainting, and looks like "hysteria," especially when the trigger is something that is stressful, like a fight with someone.

Strangely, there are very few reports in the neurological or psychological literature about this, and even a recent popular review article on things that are mistaken for pseudoseizures doesn't include cataplexy. If any of you would be willing to let your stories be told as part of a case series -- with all your identifying details changed, of course -- I think I can help change that, either through a journal article or a presentation at a medical conference. No fame or glory involved, but at least the doctors who read or hear it won't miss the diagnosis the next time they see it! If you're interested, just post here and let me know, or send me a message.

Absolutely. I was diagnosed with N and C in May. I was 45. I had a full C collapse at age 9. Living with N/C and working around it is all I know. I never complained about it, but it affected me every day- I thought I just needed to try harder.

So, about 5 years ago, I went to an ENT to have my nose (couldn't breathe through it) corrected because I snored. He was B/C in sleep medicine and gave me the Epworth test. He sent me to "his" sleep lab to check for Apnea, which I did not have. But my results were something he had never seen. So he referrred me to a neurologist.

The neuro tested me for elilepsy with a sleep deprived 24 hr EEG. He found leg movements during sleep and micro-sleep episodes during the day, etc. He never referred me to the Sleep Specialist in the same practice. I thought this doctor was qualified for my care. I did not know about the sub-specialties of sleep medicine then.

Regarding C, I told him sometimes I drop things, like a cup of coffee. When I get startled, I lose my balance- I was just jumpy. I had no understanding of C so I could not describe it well. I did not connect dropping things and falling with emotional/other triggers. He diagnosed me with PLMs (periodic leg movements of sleep). He said dropping things must be caused by PLM so bad that it happens during the day- kind of a "best guess- close enough" diagnosis. He treated me with a long acting sedating benzo- Klonopin. Getting off this medication almost ruined my life- but I survived it, Thank God. This neuro tested me for a brain tumor and aneurysm and other scary stuff. I thought I was dying from something. I almost died from his treatment. He treated Narcolepsy with a long acting sedative that causes physical dependance- horrible, horrible.

I changed doctors to a sleep specialist. I still did not understand Cataplexy. I told her that I sometimes drop things. She started me off Klonopin and did a PSG/ MSLT anyway, knowing that Klonopin disrupts sleep architecture. She was suspicious of N and needed me Klonopin free. When I was, we repeated the PSG/MSLT and the Dx was made. The Klonopin withdrawal made my Cataplexy more severe and frequent than I ever experienced, so there was no doubt what it was. Reducing Klonopin causes a REM rebound, which was horrible for me with undiagnosed N and C. I think N should be tested for and ruled out before anyone is prescribed Klonopin because its use prevents diagnosis.

The other cruel joke was that symptoms of Benzo discontinuation mimic multiple symptoms of N and C, so it got very confusing. I am thankful for a well qualified specialist. She knew what she needed and knew what to look for.

[thecatnapper]

The other cruel joke was that symptoms of Benzo discontinuation mimic multiple symptoms of N and C, so it got very confusing. I am thankful for a well qualified specialist. She knew what she needed and knew what to look for.

Going through withdrawls from Ativan was the worst experience of my life and I've experienced some pretty awful things. I'm totally against benzos because of what I went through. They are overly used and abused by doctors who blame everything on "anxiety" and these same doctors don't seem to be educated on how addictive they are.

[Hank]

Going through withdrawls from Ativan was the worst experience of my life and I've experienced some pretty awful things. I'm totally against benzos because of what I went through. They are overly used and abused by doctors who blame everything on "anxiety" and these same doctors don't seem to be educated on how addictive they are.

I don't want to get off track from Cataplexy Wrong Diagnosis

I agree completely with the above. I am so sorry for your experience with Ativan. Anxiety was not something I dealt with and was not why I was treated with this. However, sedating a sleepy person with Klonopin certainly caused me some anxiety about staying awake. Yikes. Then going through withdrawal so I could be accurately diagnosed certainly caused some anxiety. Did it cause anxiety- YES. Did it treat anxiety- NO. Wrong Diagnosis. Wrong Treatment. Wrong Drug. Klonopin is originally a seizure medication- It did keep me still at night and I did sleep straight through, but it robbed me of deep sleep even more than Narcolepsy.


Stopping this medication made Cataplexy the worst ever, for me. It is still settling down 6 months later.

[thecatnapper]

All along I kept telling the doctors that something was seriously wrong and they kept saying it was mental illness. They did put me on Adderall to keep me awake and give me more "energy" even though my diagnosis at the time was clinical depression. It kept me awake alright, so much so that I couldn't sleep at all. That's when they added the Ativan to make me sleep at night and to counteract the nervousness the Adderall caused. But, now that I think about it, my cataplexy was MUCH worse when I was on SSRI's. Actually, any psychotropics made it worse which is why I'm so opposed to taking them now. I would tell the doctors about what I was experiencing and they would just say that I was having panic attacks or that my symptoms were psychosomatic and then they'd give me more psych meds! At one time I was taking 6 different psychotropics!!! What I was calling "seizures" got so bad at that time that I felt like I constantly had jolts of electricity passing through me. The doctors would not listen to my frantic pleas for help so I finally said enough is enough and I slowly got off of them all without telling the doctors and eventually it got better. I DO NOT RECOMMEND THIS. Anyone who wants to get off these kinds of drugs needs to do so under the care of a GOOD doctor. It is only because of my iron will that I was ever diagnosed with N w/ C. If I had listened to all those other doctors I'd still be a zombie lying on the sofa listlessly staring into space all day long.

P.S. I know that most of the so-called mood stabilizers are anti-epileptics and SSRI's supress REM sleep so many with N feel much better on them which leads me to wonder how many people being treated for mood disorders actually have sleep disorders???

[purpley]

Thanks, Hank and catnapper! Sorry for my slow response, but I never got any emails telling me anyone had responded, so I figured I just scared everyone away with the long poll...

Anyway, Hank, your story really takes the cake -- you saw an ENT who was board-certified in sleep medicine, he had you evaluated in a sleep lab, and he missed the diagnosis? And then a neurologist did a 24-hr EEG, saw microsleeps, and missed it? Wow. So you didn't get the right diagnosis until you self-referred to the sleep specialist. Catnapper, you also didn't get diagnosed until you self-referred to a neurologist specializing in sleep disorders, right?

Crazy. Considering your stories and the other stories I've heard, and how many people don't have health insurance, I'd say it would be a miracle if even half the folks out there with N have any clue that they have it.

[Megssosleepy]

Crazy. Considering your stories and the other stories I've heard, and how many people don't have health insurance, I'd say it would be a miracle if even half the folks out there with N have any clue that they have it.

My number may be off, but I think its something like 1 in 4000 have it and only 15% are properly Dxed... no that doesn't sound right... but its something along those lines!

[tabster1]

So I was diagnosed with N/C a few years ago. Then last fall I started having cataplexy attacks all the time. I would feel really weird beforehand, like nervous and jittery and my heart beating fast then I would go down. I thought it was cataplexy brought on by nervousness but I still ended up in the hospital for a week. They checked everything and decided it WASNT narcolepsy, wasn't epilepsy, wasn't heart problems, and wasn't psychogenic seizures. They caught an episode on a video EEG and said it didn't look like anything they had seen before. My head was drooping forward but then they asked me to put my arms straight out in front of me and I could do that. Honestly, I looked more drunk and falling asleep than anything. Then I got a sleep doctor who specializes in narcolepsy and he said it was cataplexy brought on by panic attacks. And I would get a massive headache afterward which he said was probably because of the stress. But I was completely aware the whole time, I could hear everyone around me yelling "She's out, she's so out!" I usually had no idea how I fell though because my eyes would close and I would lose all sense of direction. But it would usually hit somewhat gradually and I would be fighting it for awhile, droop over then pull myself a bit only to droop to the other side. Then eventually it would become a full muscle paralysis. I think the longer I fought it the more freaked out I would get and the longer it would last.

EDIT: also just wanted to add that I only had minor cataplexy before I was diagnosed. Not noticeable from the outside at all. But I guess the stress made it worse, or it was just going to do that anyway?

[Eraizaa]

Hey!

Mine was a completely different story. I was diagnosed correctly from the start, just, not with Narcolepsy/Cataplexy.

My primary doctor diagnosed me with Hypothyroidism (which mimics a lot of Narcolepsy symptoms), and, you know, she was right, I did have Hypothyroidism, except, she ignored the Cataplexy all together (Hypothyroidism can't mimic Cataplexy). It took me around 7 years to find a doctor who took a look at my labs and said that my Hypothyroidism was no where near bad enough to mimic Narcolepsy and that's when I got the right diagnosis around January this year. Funny thing is, I did bring up Narcolepsy to my primary doctor back then. She just didn't consider it and wanted to blame Hypothyroidism for everything. It was quite annoying. Before all that, I was also diagnosed with having a kind of lazy vision which makes my brain take rests from time to time causing me to fall, a 'special' kind of asthma that makes me fall when I laugh, and emotional hypoglycemia. Wow, things doctors will come up with just so that they don't have to admit they have no idea what's wrong.

Now, finally, I'm under treatment and I feel normal! Not falling asleep everywhere and Starting life over is awesome...well, I still have Cataplexy attacks from time to time, but hey, still a lot better than how it was before. They also found some sleep apnea, so, that's 3 sleep/energy draining disorders. ^^;

[tabster1]

Hey!

Mine was a completely different story. I was diagnosed correctly from the start, just, not with Narcolepsy/Cataplexy.

My primary doctor diagnosed me with Hypothyroidism (which mimics a lot of Narcolepsy symptoms), and, you know, she was right, I did have Hypothyroidism, except, she ignored the Cataplexy all together (Hypothyroidism can't mimic Cataplexy). It took me around 7 years to find a doctor who took a look at my labs and said that my Hypothyroidism was no where near bad enough to mimic Narcolepsy and that's when I got the right diagnosis around January this year. Funny thing is, I did bring up Narcolepsy to my primary doctor back then. She just didn't consider it and wanted to blame Hypothyroidism for everything. It was quite annoying. Before all that, I was also diagnosed with having a kind of lazy vision which makes my brain take rests from time to time causing me to fall, a 'special' kind of asthma that makes me fall when I laugh, and emotional hypoglycemia. Wow, things doctors will come up with just so that they don't have to admit they have no idea what's wrong.

Now, finally, I'm under treatment and I feel normal! Not falling asleep everywhere and Starting life over is awesome...well, I still have Cataplexy attacks from time to time, but hey, still a lot better than how it was before. They also found some sleep apnea, so, that's 3 sleep/energy draining disorders. ^^;

Did they actually say you had emotional hypoglycemia?! I think doctors just can't admit that they have no idea, so they start making crap up.

[The Dreamer]

Years ago....my primary dx'd it as hypoglycemia. Though later when seeing my current primary, he said it was impossible that I had hypoglycemia, but wouldn't stay to answer what it was instead.

My Neurologist/Sleep Medicine doc said it was depression. Even after my primary had made the diagnosis of Cataplexy.

During this process....I had a Sleep Deprived EEG in January 2010 to see if I had Narcolepsy....I later got a hold of the results, and it did note short sleep latency and rem onset, suggesting that a sleep study should be done. But, I never heard about that, and I didn't get a PSG/MSLT until after I went to my first NN Conference in 2010 and told my sleep doctor about the other symptoms that I was too embarrassed to tell him about.

After my ER visit of May 10th, 2012....they had me wear a Holter to rule out cardiac involvement and undergo another Sleep Deprived EEG to rule out seizures. Before settling on Cataplexy. It took a couple more months to find a doctor to give me the Narcolepsy diagnosis and get me started on Xyrem.

It was strange, because I had once asked my primary if I had Cataplexy...but he rattled off the definition for Catalepsy, and said no and then walked out of the room and never came back (or I would've had him google up the correct definition.) But, this time he knew the correct definition....though he had to google for treatment options.

The Dreamer.