Good morning, For those who suffer from acute episodes has anyone found the episodes seem to occur at a particular time of day? The five episodes I have experienced have each occurred in the morning after breakfast time, after taking my morning meds & vitamins, & in three cases, then following my walk. Ann

Episodes of SCLS usually take 24-48 hours to develop and reach a peak, but you may not realize that you are experiencing one until you get out of bed and go for a walk -- and all of a sudden you notice that you don't have your usual energy or, for instance, you pass out. And the reason is that during the night and the day before your capillaries were leaking, so your heart and brain cannot cope with the missing oxygen and blood delivery once you put them to work in the morning. If you had slept in until noon, you would have felt ill after getting up for lunch. In sum, acute episodes don't take place only in the morning after one goes for a walk; that's just when one often notices the problem.

Thank you very much Arturo. Your explanation sure makes sense. The leaking the day before & during the night most likely explains why some mornings I'm too exhausted to get going like I normally do. I'm beginning to understand what to look for well ahead of an attack occurring. Ann

Also, Arturo, is there something I could do when I feel an attack coming on, like drink electrolytes, etc? to lessen the severity?

Episodes of SCLS have some consequences akin to dehydration (because of the leakage of plasma out of the circulatory system), so patients experiencing an episode should take liquids ahead of their arrival at the hospital, and then should be given fluids intravenously in an ICU setting. (How much to give and what fluids to give is a delicate medical question, see Disorder Details.) In terms of medications, steroids taken orally ahead of hospital arrival, and then administered intravenously upon arrival, have been known to help minimize or abort episodes. However, because of their harmful long-term effects, steroids should not be taken on a continuous basis to prevent the onset of episodes. Other medications usually given in a hospital setting are albumin, vasopressors and colloids. Every episode of SCLS has the potential to become an out-of-control, life- and limb-threatening experience, and thus needs to be monitored with proper medical equipment (e.g., a device to measure the concentration of the blood, as well as cuffs or more invasive ways to monitor the drop in blood pressure). Going by how one "feels" is not safe enough. Therefore, I urge you and others *not* to attempt to "ride out" episodes of SCLS without being under close medical supervision. I was acquainted with patients who died thinking that they knew just how to navigate through an episode of SCLS on their own.

Hi Arturo, Thanks so much for all of your help!! My mom, Ann, and I are so appreciative. I have a question regarding steroids...so far all of my mom's episodes have not included swelling of the limbs. The only swelling that occurs is after fluids are given intravenously. Are steroids only given for swelling of the limbs? So far, my mom experiences a drastic drop in blood pressure, weakness, passing out, vomiting, etc. When she arrives at the hospital, intravenous bolus' are given and her blood pressure is monitored in an ICU setting. Theophyline is also given as well. The other interesting thing is that her white count drops dramatically and then rebounds by the next day. Have you ever heard of that happening? Her albumin levels always drop; however, they have never given her albumin. My mom does know now that they need to call 911 every time this happens. She will be working hard this week to contact the immunologists that you suggested at the University of Denver so that she can pursue IVIG therapy. Thanks so much for everything!! Christin