Symptoms - Emory University Hospital: Fill & Download for Free

Seven years ago, I started having strange stomach pains. No nausea, and not really cramping. My gp sent me to a gastroenterologist, who ran tests and determined I had a minor case of gerd. I started taking omperazole, which really didn’t touch the stomach pains.Six months later, I had a heart attack. I was 43. No risk factors (not overweight, good cholesterol, etc, no blockages). I had a clot in my right artery, with no explanation how it got there. They ran tests, including tests for clotting disorders, but everything came back clean.After my heart attack, I started having bad chest pains. I tried cardiac rehab, and I would be okay during the exercises. But I would come home and have chest pains & shortness of breath. After two more hospital stays, my cardiologist referred me to Emory University Hospital in Atlanta. Thank you God that he did!! Long story, but I ended up with the head of Interventional Cardiology. After a “Challenge Heart Cath”, I was diagnosed with coronary artery spasms. Basically my arteries spasm. One of the myriad of symptoms is, you guessed it, stomach pains. I now wear nitro patches, take a calcium channel blocker, and carry around a vial of rescue nitroglycerin. But no heart attacks since. I have times that I feel worse than others, and I know that this condition might eventually worsen. But I’m so grateful that for the most part, I live a pretty normal life.Strangely enough, I’m thankful for my heart attack. I’ve networked with others who has ever this condition who have sought answers for their symptoms, only to be assured by cardiologists that it’s all in their head. CAS doesn’t show up usually on normal cardiac testing. My heart attack refused to be ignored.

PTSD affect’s smell. I still remember the smell of death when I walked into a room full of dead soldiers, The smell of a body you find long after he/she died.Every diesel car exhaust smell, Food must smell fresh, I throw food away before the expiration date. Firework smells send me to my bedroom. I used to go to Canada on the 4th of July. It wasn’t just the god awful sound, it was the smell. I’ve never attended a New Years Eve party. I’ve been invited to many but have no desire to smell any popping, firework, Yes, I smell things you wouldn't expect HAS a smell .I live in an area that occasionally has smog or dirty air alerts. I leave the area. Smells trigger memories of war. War smells. Dirty air, smoke, loud noise. Yes, crowed areas smell.No one smokes around me. I’ve never turned on a gas stove in my life.Are others fine with smelling things I cant? of course they are.PTSD treats every sufferer differently.“The olfactory system is often an underappreciated sensory system in humans, even though we've all experienced the feeling of smelling a particular odor and having an almost instant flashback or emotional experience of an old memory,” said Filomene G. Morrison, BA, a neuroscience PhD candidate at Emory University and McLean Hospital, and the lead author of the paper. “An emotional memory, like the smell of home cooking, can trigger feelings of comfort, while for those with PTSD, an odor associated with a traumatic experience can trigger a negative response and PTSD symptoms.”(Mclean Hospital)

My son’s behavior had been getting strange and unpredictable for a couple years. At first it was treated as an oppositional defiance disorder but there were other odd things happening that didn’t fit. We tried antidepressants and mood stabilizers which seemed to work for brief periods then our son’s behavior would become odd again.One key problem was a perceived lack of honesty and personal responsibility for things he had to have done, but we never witnessed. He would deny his involvement but there was no one else who could be responsible.Our therapist had suggested a residential program much to our unease. Periodically, it would seem as if our cooperative and friendly child would return to us. One key “behavior problem” was waking for school. When I expressed concerns about his extreme refusal to wake, our therapist suggested that we investigate potential medical issues before proceeding with a residential behavioral program.What I discovered was that sleep disorders often look even stranger to the untrained observer than psychiatric disorders. After too many harrowing episodes and gut wrenching altercations, I discovered a couple web pages about a rare disorder called Kleine Levin Syndrome. It was too odd and rare for a desperate father to stumble upon and be right. I showed the descriptions to doctors and family. They mostly agreed that the symptoms were all things we had observed (even items we never connected to the other behavior) but I was just a father with an over active imagination.As we ruled out other possibilities I became more convinced that KLS was the culprit. In February of 2017 our son experienced a major meltdown. I could either have him committed against his will or wait until he “fell asleep.” Early the next morning we dressed our teenage son without waking him. I carried him down to my wife’s car and we buckled him in. He stirred briefly but remained asleep.It took five medical workers at the emergency room to remove him from the car because he clung to the vehicle and he still wasn’t awake. Sedation was ordered but did not arrive before he woke about two hours later.His demeanor was a stark contrast to the wild teen they wrestled onto a gurney. He was joking and pleasant. He was aware and lucid but could not account for his presence in the hospital. Head scans were immediately ordered. Our son was admitted for four days. We were eventually referred to a teaching hospital where he was diagnosed with Kleine Levin Syndrome more than two months later.It took another five months before we found and met with a doctor familiar with the disease. Two months after that, we finally met the researcher whose papers I had read about KLS.There is no cure or treatment for KLS. We are still experimenting with medications, hoping to find an effective treatment. As a parent, this is the toughest thing I have ever faced.KLS is an illness of the limbic system, possibly an autoimmune disorder of the hypothalamus. This part of the brain regulates sleep, memory, body temperature, libido, appetite and mood. Our son has had intermittent problems with all of these functions. When episodes end, he returns to “normal.” He was not lying about not doing the various inexplicable things around the house. He legitimately had no memory of them.Note:I see this answer is getting some attention. If you would like to know more about Klein Levin Syndrome or if you would like to help the much needed research into this disease, you can give to the KLS Foundation or the sleep research centers at Emory University or Stanford University.UpdateAccording to KLS studies, approximately 30% to 40% of patients respond to lithium therapy. In these patients, KLS episodes are reduced from weeks or months to days and occur with significantly less frequency or eliminated entirely. Our son is one of these lucky few. After struggling with public school, our son completed his GED in 2019 and was admitted to the local community college in 2020, before his 17th birthday. He still struggles with excessive sleepiness, but most of the behavioral symptoms are gone or greatly diminished.