Hi Everyone, After just returning from 4 days in the hospital (my 5th episode) in So. CA while visiting my daughter & her family, I have decided it's time to get serious about finding help for SCLS. When I return home to CO I plan to pursue finding a hematologist/IVig doc. I'm a very active (Type A) wife & Mom with 3 kids, 10 Grandkids & one Great Grand! I love to walk my active Vizsla dog 2 miles a day, but live in a very hilly area. Three of my attacks have occurred while pressing up steep hills. Never connected that exertion to SCLS. Thankfully, it was by my 3rd episode that I was properly diagnosed by a pulmonologist in Colorado Springs. However, he felt it might have been triggered by some meds I was taking, so after going off all my meds I thought I was home free & had no episodes for 6 months. But then here I was back in ICU in a different state with no docs knowing what to do, no docs having ever heard of it. How thankful I was that my husband & daughter were able to share printed info from this website with them & asked them to look up the info as well. They did so & put me on Terbutaline & a Theophylline drip. The drip overdosed me which then caused hours of vomiting. We plan to carry the printed info in our cars, in our travel trailer, suitcases, etc. Never did I imagine till reading this website that stress, flying & exertion might be triggers to SCLS. I know it's considered idiopathic, however, on Easter Sunday we hosted our family of 20, then on Wednesday hopped the airplane to LA, & then my 5th episode hit when my daughter & I were walking up a very steep hill! Hmmmm...sounds a little suspicious to me! As I look back, in 2005, twice when walking my dog on our hills, I leaned over to take care of something on my dog & found myself passed out for several seconds. I spent a couple of months going to docs & they ruled out strokes, seizures, but couldn't find anything wrong. Wonder if it all started at that time. Then a big episode hit in 2010, followed by 2 back to backs 5 months later, followed by the 4th 10 months later, & now my 5th 6 months later. I look forward to sharing & learning more from all of you. Ann

Hi Ann I have had 3 very serious attacks before being diagnosed with SCLS. All have been associated with long flights (international), exercise and stress. Looking back I can also see that I had minor attacks as well again associated with flights, exercise and stress. I am now being treated with IVIg and things are much better but I still have to manage the above hree triggers. This does make it hard as my job involves business flights and prior to being diagnosed with SCLS I was very active with running, riding, out door activites etc. However at least I know what to manage and can get on with life. Warren

Hi Warren, Thank you so much for responding to my post! What a wonderful specialist to have secured funding through your local hospital for IVig. Was he a hematologist? I'm interested to know how you go about managing your triggers when you still have to travel by air. You sound like you love exercise & outdoors like I do...have you had to give that up altogether? I've had 3 days to rest now before we return home by air tomorrow, so all should be well! Ann

Hi Ann I restrict my air travel to more important trips although I do still travel probably around twice a month. In fact I have just landed back in Australia from a trip to USA for business. On long international flights I do make sure I get a flat bed it makes a huge difference. I think the fact that I can travel at all is due to the IVIg treatment. I do not exercise at all after a long flight and unfortunately I have dramatically reduced my exercise overall. I do find that I have better times during the month between treatments but I have not got a clear pattern yet. I have found walking to be the most tolerable form of exercise but as you found if the exertion level gets too high it can cause serious problems. My sepcialist is an immunoligist and she has been fantastic in supporting my need for IVIg treatment. She has relied heavily on the information Arturo and others have posted to this site. Regards Warren

Thank you Warren. All your comments are so helpful! Just one more question at this time...does your IVig treatments take 5 hours a day for 2 days in a row? Ann

hi Ann It takes about that long. The recommened amount of IVIg is 2mg/kg over 2days. My hospital follows a protocol which starts adminstration of the IVIg very slowly and then accelerates. This routine is followed on both days. Warren

Hello Ann, I was diagnosed this past December 2011 when I had a full blown attack that landed me in the hospital on a ventilator and faciotomies on all four limbs. I am writing you because I am a group fitness instructor. Exercise is my job and my life. I had been fighting a small cold and went to teach a body pump class at 9:00am and passed out. I went to the ER and was sent home with a diagnosis of a virus and dehydration. I was given IV fluids. I spent the rest of the afternoon at my MD's office complaining of tight limbs. I was given a steroid shot and sent home. By 9:00pm the same day I was rushed to the hospital because I was rapidly declining. The rest you read at the top of this message. My main concern was "did exercise cause this attack". I have been to the Mayo Clinic and the NIH. Most of the doctors said no and have given me the okay to exercise. I take Theophylline pills and receive IVIG ( I have had only one dose so far that was administered over 2 days; 5 hrs and the 3hrs), but only every three months ( a very unconventional approach). I have not had any other attacks and can not think of any prior minor episodes before this attack. I am back to teaching, but the nerve damage in my feet and my sore joints are an issue. I teach Spin, Body Pump, Pilates, Water Fitness, and Step. I am back to my old level of intensity but not back to the amount of classes I used to teach in a week. I probably will never get back to that, but so far the intensity has not triggered any more attacks. I am hoping that exercise was not the trigger, but I am being vigilant and carry my forms with me at all times. Please keep me informed if you have any other episodes triggered by exercise. Thank you and God bless. Cristina

My husband once passed out from an episode during an exercise session. It was explained to us that the exercise didn't cause the episode. The episode was happening one way or another (and had probably been happening for a few days prior). The doctor's opinion was the episode came to a crescendo while he was exercising because his decreased blood flow couldn't keep up with the demands aerobic activity places on the body and its vascular system. Not being a doctor myself, I can't say if this is true for everyone with SCLS, but I certainly believe it true for my husband. If anything, his passing out during exercise alerted us to an existing episode, probably earlier than we would have noticed otherwise. But his doctors don't believe it cause the episode and encourage him to continue doing so. So, we are enrolled in a rehab exercise program, and as Cristina mentions above, we remain vigilant and prepared.

If anyone has a story to share about episodes after air travel, I would appreciate it. We would like to take a flight this fall, but are scared to.

As far as flying goes I have flown several small flights with no problems, Up to three hours in the air with a break and a walk. Then another 1 hour 4 hours air time has been the most amount of hours spent on one flight. Any swelling I just get into the swimming pool and aqua jog. I swear by this exercise and I am sure an attack in not brought on by exercise for me. Ruth Nolan NZ

Hi all, hi Ann, Your story sounds familiar to me because I experienced several times swelling _-after-_a cycling tour through the mountains, and sleeping (1200 meter a.s.) on à higher level than I'm used to be at home (sea level). The last time it induced à long period of chronic persistant facial and abdominal swelling and à lot of other problems. On the other hand others don't experience something like that at all. Interesting.

We took our trip, which involved a one hour flight there, and then back. My husband (who is on monthly IVIg) did not experience any ill effects from the flight thus far. Our destination was Vancouver Island, which is at a much lower elevation than our home city in Alberta. We had a relaxing time with no health issues, other than my husband tiring out very quickly. We had to rest up quite a bit in the hotel room, but had it well stocked with magazines and snacks. It was our first vacation since my husband first became ill three years ago. Thanks everyone for their feedback and for sharing their experience.