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Syncope with Muscle spasms?

Ok this is a long one and I'm sorry but I'm so fed up! My son is 17 and about a year and a half ago began passing out for maybe 30 seconds at a time. Here's a quick synopsis of the last year: he saw a pediatric neurologist who ruled out seizures, he's been under the care of a cardiologist who we see every 2 months, all EKGs are normal, CAT scans all normal, his heart itself is normal, wore a heart monitor for 2 months which reported nothing, is on 8 Thermo tabs daily with no improvement, high salt diet with no improvement, blood tests all normal. SO, instead of any improvement after all this, he's actually gotten worse! Symptoms are as follows: chest pain he describes as someone squeezing his heart, dizziness, blurred vision, then the syncope during which he has seizure-like muscle movements. Upon coming to: he's alert, normal blood pressure, normal temp, normal pupils, no muscle weakness. In fact, he feels as though nothing has happened! He also experiences symptoms of lupus: butterfly rash, joint pain and swelling, headaches but his ANA test was negative! Can anyone provide any insight? This is seriously impacting his quality of life. And we don't go back to the cardio until June. He has an episode about once a week and they're lasting longer. No one seems to have answers and we're going around in circles. Please help!
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976897 tn?1379167602
Has anyone considered Narcolepsy or a form of it?
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Avatar universal
No! I wasn't aware that those symptoms accompanied narcolepsy. Do you think that's something I should bring up with the cardiologist?
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I'm a 33 year old female and the symptoms you are describing are IDENTICAL to how my symptoms presented when I was 16. I ended up dropping out of high school in my junior year, at 17 years old, due to my inability to overcome my symptoms. After LOTS of tests I started doing my own research on sleep disorders because I was very tired during the day, but was also not sleeping well when I was asleep. I was finally diagnosed with Narcolepsy with cataplexy but my cataplexy symptoms have called down alot over the years.  

My symptoms pre-diagnosis:
Had "spells" where I'd suddenly start to feel dizzy, my legs would give out, my vision would quickly fade out to blackness or like dark TV static even though my eyes were still open. My upper body, especially toward the end of the spells which usually only lasted a few minutes, would spasm or jerk, which kind of felt like it was mainly from the shoulders and I described it as feeling like my body was trying to reboot or something. About a year before I started having the above symptoms, I was experiencing heat palpitations that caused shortness of breath, fluttering in my chest, pain/pressure in my chest, very rapid pulse and lightheadedness,sometimes even fainted. I also had the butterfly rash and lots of stomach trouble like nausea and heartburn.

Wore a heart monitor for 12 weeks and was told my heart issues were caused by "inappropriate sinus tachycardia" and was told to increase my salt intake.

They tested thyroid, brain MRI, CT scans, blood tests, kidney and liver function were done, they started to act like I was making it up. After doing some research we went to see a sleep specialist instead of a general Neurologist. I had a Polysomnagram and the Multiple Sleep Latency Test (MSLT- this is the important one) done which confirmed beyond any doubt that I had Narcolepsy.

After recent health problems requiring blood tests, I had a positive ANA result and my doctor is referring me to a rheumatologist with the concern that I may also have Lupus or MS due to my symptoms during my most recent episode. It makes me wonder if there is a Narco-Lupus connection.

I'm relieved to see I'm not the only one whose symptoms weren't "by-the-book". My Neurologist said he's only ever had 1 other patient who had the syncope, heart issues, and temporary loss of vision and she was also in her teens when diagnosed. Makes me think that when it shows up at a younger age that the initial symptoms are different than if already in adulthood at first onset of symptoms. Wish someone would do a study...
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Avatar universal
Do not feel upset if Cognitive Behavior Therapy will be mentioned by one of your Providers as a treatment option while diagnostics are still being run and sought. If you get slighted by this idea alone, then you probably do need it.
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Avatar universal
1. Has he had a cpet?
2. Tilt table test?
3. Skin biopsy for sfn?
4. What was the CT of, cardiac, chest or head?
5. Has he had a spinal MRI, brain MRI?
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