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Any suggestions as to what could be wrong or what next steps to take?

My wife starting having sleeping spells about 2 years ago. She would wake up in the morning feeling as if she hadn't slept at all during the night. This happened for 6 months or so and it developed into not being able to wake up for 3 to 4 days straight. She falls asleep in the car and pretty much anytime she sits or lays down anywhere. In addition, her whole body twitches (spasms) whenever she is falling asleep and trying to wake her up after she's fallen asleep is near impossible. We thought it had something to do with Narcolepsy but after visiting several PCP’s (3), neurologists (1), endocrinologists (2), they ruled it out and nobody can seem to find much wrong with her. They found her prolactin was elevated and the neurologist found a “possible adenoma in the pituitary” after a CT scan, and that she has small seizures that make her forget things and creates confusion. Nothing more came out of that visit. Our last PCP pretty much said it was all in her head and that she needed to go see a psychiatrist. So we found a psychiatrist and she's been attending but this route takes a lot of time and her symptoms are not getting any better. Given that it's been so long since she started having this problem she now doesn't want to go to sleep anymore and tries to do anything she possibly can to stay away for fear of not being able to wake up when needed.
Additional symptoms:
Extreme anger after waking up
Bloating after eating
Nausea after eating
Shortness of breadth
I started noticing that she would fall asleep right after eating anything with sugar, so she's cut back on this but it's not the solution.
She believes it might be a parasite or bacteria she could have contracted when we went to South America to visit my family. We haven’t been able to confirm if this is the case because our PCP’s don’t believe her and won’t order the tests (bloodwork or CT Scans) needed to confirm. I’m looking into scheduling a CT scan without insurance just to be able to confirm or rule out certain ideas we have. We’re going to start with Brain and spinal cord and go from there.
We’ve been dealing with this for the last 2 years without getting anywhere close to an answer. This is taking a huge toll on the family and i'm extremely disappointed and shocked with the way doctors have handled the whole situation. It's like, if they don't know then it's in the patients mind. They don’t try to find a solution, just a way to charge you to do things. We're extremely frustrated and we don't know what else to do since the doctor’s we’ve seen aren't helping us.
If anybody has had any symptoms like this or knows someone who has can you please let us know what next steps to take from here?
2 Responses
1756321 tn?1547095325
First condition that comes to mind is Kleine-Levin Syndrome (KLS) aka Sleeping Beauty Syndrome. KLS is a rare sleep disorder and can be misdiagnosed as psychiatric or in some cases epilepsy.

"When coming out of an episode be prepared for upset, frustration and anger." - KLS Support UK

A sleep episode. Episodes can last 20 hours, days, weeks or even months! Dysautonomia is a possible symptom of KLS. This could explain the digestive issues, heart rate, shortness of breath and headache.
973741 tn?1342342773
My sister in law has nacolepsy.  She has an atypical version of it and this was diagnosed through a sleep study.  Do you have a university near you?  They often have sleep clinics where they will study her sleep.  I would look into this.  
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