Hi, my name is SueAnn and I am new to this forum. I was hoping to start a discussion about triggers, I am curious if any of us share the same triggers. I believe I had my first episode in 1979 when I was pregnant with my son (hormonal), and remained episode free until May 2000. My most severe episode has been about 13 pounds and I have never required hospitalization. I was diagnosed by Roger Fox, M.D. at USF in Tampa, Florida. I also consulted some Docs @ Brigham Women's in Boston. Dr. Fox advised me that me felt I have a "rare variation of a rare disease" in that I leak often and self reverse quickly. Some of the triggers I have been able to identify is *heat* (I moved from Florida to the Pacific Northwest, I returned to Florida for a visit in April 2009 and cut my visit short because the heat was enough to bring on an episode. In fact my legs were the largest they have ever been.) Being exposed to certain perfumes, incense, and paints. Entering stores, especially during the Christmas season with all the new products jammed into the stores with all their off fumes cause a leak. New construction is also a trigger for me. And these two seem the strangest to me but, it is emotional stress and exerting energy I do not have and what I mean by that is simply pushing myself. Oh, and I believe some foods are also a trigger but with the foods it seems to be the quanity.....I can eat shrimp occasionally but, not several days in a row. I welcome any and all comments.....Thanks

My biggest triggers are air travel and stress of any kind (physical, emotional ect.). My worst events were generally after a plane trip.

Here are my most common triggers: Bending over to do something has caused leaks. Some types of grilled steaks. Temperature changes. Very likely after being in the cold and turning the heat on in the car. The opposite is also true. Strangely milk does not cause problems, but some types of juices do. Mild exertion is the most likely trigger but not consistant. I believe certain perfumes are a trigger but I am not sure. I have tested myself on triggers to prove or disprove them against my Doctors caution. So far, I have *not* been able to cause a leak. Walt Breidigan

Hi Sue Ann, I am so sorry you have these triggers, but at the same time I am happy to know I am not the only one with some of the same triggers. I cannot stand the heat!!!! It makes me very sick, and it produces severe swelling. My mother lives in Florida, and I am torn, because I cannot visit her in summer, she has air but she gets so cold she keeps it at high temp. In the winter is ok for me, but she turns heat on. I cannot win, ha. I keep our home at about 66 degrees summer, winter 68. I feel much better at those temps. Air travel also is a real bother to me. I do believe stress plays a huge factor in our attacks. My worst episodes were preceeded by stressful situations. My last three episodes were in December of 09, stress of holidays. Although at the time I did feel I was stressed. Also I avoid shell fish. Like you, over exertion, I am a pusher, and I cannot do that anymore. I have had to slow down alot, and that was a very hard thing to do. It appears that we are so much alike with our triggers. Thanks for your posting. Have you had a genetic testing? I just did, they found I have a rare genetic mutation. Interesting? Let me know if any of you have this, and I wonder if it is related to syndrome? Stay strong everyone, we are in this together! Blessings, Mary Jane

Dear Sue Ann, I think there are definately triggers but the two most common for me are overexertion and emotional stress.I used to go to the gym every day now I go only if I feel good, maybe 3 times week and limit it to 30 minutes of very moderate exercise. I also seem to be affected by temperature change, especially hot weather. Perhaps the hot weather causes dehydration faster. I usually lie down and drink moderate amounts of water if I feel "overheated" and it passes. The emotional stress is made more difficult when you take the Theophylline medication route since it can cause anxiety and insomnia which of course affects your emotional well being. I sometimes get very paranoid and get quickly upset over small things and am lucky to have understanding family and friends! Fortunately the Theophylline does control my CLS. I know this because I ramped it down and started skipping doses and within a few weeks I went into a full blown episode last summer. I take it religiously and have had no episodes. Finally I also agree with the food connection since sometimes I eat something that just does not agree with me, often its red meat, which makes me feel nauseous and I feel bloated. And for some reason plane travel does not affect me, since I returned from a 36 hour flight to Asia recently, not sure why but I am thankful. I hope this helps. There are a lot of great people on this site with wonderful experience. Take care and stay healthy! Allen

Hi everybody...I have a question mark around paint fumes? As that is the one and only thing that I could say has been a common thread and/or infection/cold so that is two question marks?? In October 2005 we had just completed a huge renovation on our house and the painters had been inside and out and then in September 2009 we also had the painters in doing some work. Both times I have had acute attacks. I agree with getting tired and monitor myself for this. Keeping fit is a struggle however very important for both my out look on life and my physical wellness. I continually look on this illness as a gift as so much good has come from it, along with some huge obstacles and the daily grind of pain. Thanks to all who keep me/us up dated, it really is some food for thought along with some more things to ponder. Sometimes I think more questions than answers however I enjoy reading others stories Ruth (Christchurch New Zealand)

Thanks everyone for your comments. I forgot to mention one of the most significant triggers for me, aspirin. When I was first diagnosed in 2000 I tried my hardest to find information regarding this syndrome and there just wasn't a lot out there so I just kinda gave up trying and concentrated my efforts in trying to identify triggers and learning to cope with my new "normal." It was only after seeing the episode of "Mystery Diagnosis" with Walt that I dared to hope that new research and information was available. What a pleasant surprise but, I have a lot of catching up to do. I tried the T&T regiment when I was first diagnosed but it did not interrupt my episodes. It was the opinion of one of my consulting physicians that since T&T did not interrupt my episodes that I did not have SCLS. However, my treating physician, after witnessing first hand several of my episodes stood by the diagnosis. *Is there any test to confirm the diagnosis? * Maryjane, please tell me what kind of genetic testing you had performed? Ruth, I am in admiration of your ability to see this illness as a gift. Although I am thankful to be alive I am still angry, I resent the many restrictions this illness has imposed on me and my inability to resume my previous type A lifestyle. I am so thankful for this forum and the words of knowledge and comfort given my way. After years of doubting looks when trying to explain my symptoms and defending myself because of my limited activity (no, really I am ill, not lazy!) I finally feel validated and understood. Priceless!! SueAnn

Dear SueAnn: Welcome to the RareShare site! I'll try to answer your first question, about whether there is there any test to confirm the diagnosis of SCLS. As far as I know there is not, so it's a diagnosis reached largely by excluding other diagnoses. Doctors watch whether you appear to have (1) a pattern of self-reversing episodes and (2) involving either swelling or pain in the limbs, because in the typical case the capillaries leak into the muscle compartments, and thus visible swelling may not occur. (Doctors usually cause swelling by giving liters of fluid intravenously during an episode.) You may have heard that most SCLS patients have an unusual protein called MGUS, but (a) not everyone has it and (b) others have the same MGUS -- it is usually detected during a case of myeloma, a tumor that affects the plasma cells produced in the bone marrow -- but they don't have SCLS. All else being equal, however, when your capillaries leak you are by definition losing fluid from your circulatory system and thus your blood thickens -- you have a (temporary) case of hemoconcentration. Now this CAN be measured. It is done either by taking some blood from your veins and having it analyzed in a lab whenever you feel you are having a leak, and then comparing it with your normal range; or by measuring your hemoconcentration yourself whenever you want to, by pricking yourself and putting a good drop of blood into a medical device I describe under Disorder Details, Diagnostic Tests, which gives you an instant reading. Check out also the Discussion Forum item "How to Know For Sure When You Are Having An Episode ." Please consult with your doctor or make arrangements to go to the Mayo Clinic to see the country's top expert, Dr. Philip Greipp (see the last section of the Disorder Details section).

Known triggers in my case, very similar to most I've read here, including: Heat, stress, activity, exertion -anything that causes my heart rate to go up it seems. Also any virus going around that I might catch it seems. Though many times I thought I was coming down with a virus and it may have been just the muscle ache / flu-like prodrome to an attack. But the Florida heat is unbearable and I'm trapped in my private icebox in this suburban oven of a town from May through the end of September. (Then it's the stress of the holidays - trying to pull off the whole Thanksgiving / X-mas / New Year thing - Aaaahhhh!)

It seems as if everyone is in Florida. I'm in Texas and I'm a 28 year old female who was diagnosed by a nephrologist after 7 other specialists couldn't figure out what was wrong. I swell ALL the time: the tops of my feet, my ankles, legs, abdomen, arms, neck, everything. I've been living with it since April 2008. At first my doctor put me on several diuretics and it would almost act like a cure, but for only 2 or 3 weeks...and then it would just stop working. Next Monday (6/14) we're going to try a small dosage of an ACE inhibitor. It is really starting to get painful as my skin just feels like it's going to break open. Not to mention, I feel super tired all of the time. I'm not sure about triggers like foods or heat...b/c I keep a food diary and I can eat really healthy and have a rather bad episode, or eat really unhealthy and can see my ankle bones at that time. And don't get me started about this past winter, I was really swollen then. Personally though, I'm starting to think it has something to do with where I live. I bought a house in 2007 and didn't move in until Jan. 08. My symptoms started in April 08. Whenever I leave the McKinney area and go visit friends in Dallas or even my parents in Houston, the swelling seems to come down. Have any thoughts on locations? Does anyone know where I can find a person who does environmental testing?

Dear dap23bot: Welcome to our SCLS community! You are member #99, and I only started this site two years ago, when I thought I might be one of the last SCLS patients standing! Anyway, NO, you don’t have to put up with frequent, minor leaks and the physical, emotional and financial toll they take. If you have SCLS, your MD should have you try first the traditional medications (theophylline and terbutaline), and if you can't tolerate them or they don't help you, then your doctors should give IVIG infusions a try. It’s worked very well for many patients in Europe for a decade, and now also for several of us in the United States and Canada. You should also consider making an appointment to be seen at the National Institutes of Health or else at the Mayo Clinic, to confirm your diagnosis and discuss treatment options. Check out Disorder Details and the "IVIG" and "SCLS-Study NIH" and "Off to NIH" forum postings in this site, among others, for more information. Also, if you would, please put some of the valuable personal information you have provided here on your profile page, so that it stays there until you update it. We all benefit from exchanging tips and information.

Triggers for me: High heat and humidity - not so bad when humidity is low and heat is high - but cannot stand heat on my head Plane flights - always swell Dairy product - can only eat dairy protien in extremely small amounts Stress - for sure Tiredness - cannot survive without sleep - an attack can follow a sleepless night Certain chemicals - once had acrylic nails done and suffered badly afterwards

Hello I am new to this board and it is such a relief to meet someone else with this problem as I live in New Zealand and nobody else seems to have it here. Initially it was thought I had angioedema and I had various trial drugs and saw various specialists, had a brain scan etc. but I did not respond to the drugs (prednisone, and a cocktail of anihistamines) but was tried on tranexamic acid as well and presto, I had relief...for while! Beta blockers help for a while, sudamyl helps for a while but I have not tried T and T. I will go and see my GP and ask him to prescribe it for me. I know theophylline makes you jittery as I had it about 35 years ago for asthma and I had great difficulty sleeping. However I am prepared to try it. My leak is daily and worsening and when I have bad attacks, I feel very nauseous as well. A cold shower helps a bit as does body ice packs. Hello to you all:)

Hi Windows? I am Ruth Nolan and from Christchurch New Zealand refer to my blog on Discussions Forum Ruth Nolan's path (page three) and you will get an idea of what and where I am coming from. If you want to make more contact I am happy to share any info with you? Just let me know through this site and I will give you my contact details. This site has been a life saver for me. Take care Ruth Nolan NZ

I should update my triggers after being on ivig since April 2010. Since the IVIG treatments, I have not experienced noticeable leaks. The same things that seem to have triggered leaks before does not effect me after the IVIG. I do not get dizzy after leaning down which is huge for me. I look forward to the winter, since this seems to be my worst period for leaks. I do not require naps or rest during the day as before. I can, however, see a period right before my next IVIG treatment, that I get tired easier than the first three weeks. IVIG is every 4 weeks for me. Does anyone else on IVIG see a decline in the effects of past triggers?

To : dap23bot Was wondering how you were doing. Can you update us? Your symptoms sound simiiar to mine.

Hello, my sister is currently in the hospital in California with her 5th episode. She traveled there by air on Weds and on a walk on Sat morn she had another episode. Previously doctors thought her episodes were triggered by a drug interaction. Has anyone found that to be true for them? I'm finding this website so helpful and can't wait to share it with her! Thank you so much!I Janie (Annie's sister)

My leak triggers are stress and movement. I am a chronic leaker. I have been on total medical disability since June 2011 (thankfully I have private insurance). I can not sit or stand for prolong periods. Eighty percent of my time is spent laying flat. I was also told I may have a rare version of a rare disease. I have no real diagnosis, and no treatment. I have lost a 15 year career, my social life, and I have gained 40 pounds in the past year due to the fact that I simply can't move. I went to the Mayo Clinic in Florida last year. There were simply puzzled (never really heard of SCLS) but the MD in charge of my case said I was leaking. I contacted Mayo in Rochester and was told several times that they no longer have an MD who specializes in SCLS. I was also told that "chronic" leaking is NOT SCLS. I was also tested for Angioedema and no hereditary or allergic were found. I have had multiple CTs, MRIs, appendix was removed, right ovarian was removed, complete open abdomen exploratory surgery was performed.........nothing.... Early in 2011 I had a cosmetic fat loss non-invasive procedure called "Zerona". I started having tingling in my abdomen and fevers. I eventually became too ill to continue the procedure. I began leaking during that time and it has never resolved. The procedure is a low level laser that temporarily opens fat cells causing the cells to release their contents. (I experienced recording breaking results). I am now thinking that it must have also caused my capillaries to leak contents. The physicians I have seen are now thinking this may have been the cause. I still have the same tingling I experienced with the very first treatment. I know that the NIH is studying capillary leak. I wonder if they would be interested in my unique case?

I was diagnosed in Dec.of 2010 after 2-years of episodes. Looking back my triggers seemed to be stress, exertion, and maybe heat. ( I live in Florida and had a couple in the winter and summer). I was put on the T&T regiment along with Prednisone when diagnosed but 3 months later I had a minor episode. I was then placed on IVIG In April of 2011. I also have the MGUS protein. I did not experience swelling during an episode but my hemoconcentration levels were through the roof. Any swelling occurred while being given fluid intravenously. Since receiving IVIG therapy for a year now I have had no symptoms and my energy level has increased immensely. I am thankful for the treatments of which I receive 36 gms every 4 weeks.

One of the triggers mentioned in this topic and in others is a cold or the flu. Our son, 36 years old, has been on IVIG (2gr/kl every 4 weeks) since his last episode (oct. 2012) but has never, until yesterday, had such symptoms. Neither has he ever before been in bed for a coId. This fact bothers his mother and I quite a bit. The question is: does any one know if there is any remedy for patients with SCLS recomended or prohibited to help cure a head and/or chest cold? Thanks for listening and for any information, A worried father

Hello jabo, One of the privileges of being a grandfather is that the kiddies frequently pass on head colds etc. I was concerned about treating this until I realised that many take antihistamines for prophylaxis of IVIG side effects... So I tried them to find that I felt sooooo much better overall. Now I take daily non-drowsy antihistamines, along with T&T and aspirin. When needed I can take most antibiotics. Somebody mentioned attacks brought on by bending over... I get this, presumably through the valsalva manoeuvre. John

Jabo, Patients with normal immunological profiles like the typical SCLS patient, and who are on an IVIG therapy, have extra supplies of immunities circulating through their blood. This helps to combat a number of illnesses but not always the common cold. In my case, for example, I noticed that during the past 5 years that I have been on IVIG, I have had very few colds relative to the rest of my family, and whenever I do catch a cold, it goes away a lot faster than those of the rest of my family. I credit IVIG for that. Of course, the first time I got a cold, my family and I worried that maybe an episode of SCLS would follow. Therefore, I pulled out my HemoCue device and tested my blood 2-3 times a day, and was reassured to see that my Hgb reading was remaining within its normal range. After all, when your nose drips, you ARE having a capillary leak -- but it does not signal, never mind precipitate, the systemic, internal bleeding which constitutes an episode of SCLS. In my early days, my episodes of SCLS would be preceded by cold- and flu-like symptoms, but over time they were not. As we say in social science, "a correlation does not imply causation. It may be purely coincidental, or caused by a third factor." As to what medications one may or may not take when having a cold, I am not aware of any recommendations either way. In sum, if anybody is ever worried about a cold in a patient with SCLS, whether they are or are not on IVIG, the best thing to do is to monitor their blood for hemoconcentration. If they don't have a portable Hgb analyzer, then they can ask their physician to order a series of blood tests for hemoconcentration, to be done in an outpatient facility where all kinds of blood, urine and other tests are routinely performed. It will take several hours to get the result back, but for SCLS patients on IVIG, the results that come back should be reassuring.

Thanks to both of you, John and Arturo. Our son came out of his cold symtoms with lemon and honey, a gramma's remedy. We are sure the ivig helped, as you mention Arturo. So on we go with the unknown future that slowlly unfolds ahead of us. Personally it amazes me how he takes his situation in stride, accepts the limits that SCLS imposes on him, while we find integrating this imposition into our daily lives much more difficult. Again: Thanks and "Saúde."

Arturo, what do you mean by the 'systemic internal bleeding" you refer to? I am not sure I understand this process. Jabo I am happy your son is recovering. Good news

If I can point to anything as a trigger, it's emotional stress - specifically, a broken heart. Maybe I'm being superstitious, but ever since my diagnosis, I feel like part of my personality is the emotional basis of my SCLS. In holistic medicine, there is an emotional piece to physical ailments, and the latest science is corroborating this view more and more. So at the risk of exposing some of my weirdest, deep dark neurosis, I'll ask you all about it: So many of us seem to be type A personalities or athletes, the type who work out a lot, really push themselves....I'm neither, but what I might share in common with you all is the tendency toward self-denial. I push myself but don't have a sense of reward or achievement - it's more about obligation and responsibility. There's a lack of joy in life, there's a tendency to deny love, to keep a wall between myself and others both for my protection and for theirs. My behavior toward others is as warm and kind as I can make it, but deep inside I don't allow myself real connection. I'd like to know if anyone else here is overly stoic, to the point even of denying yourself the love of your life? Have you convinced yourself that your happiness doesn't matter, or that you are not meant to be loved? Or maybe feel somewhere deep inside that there is something wrong with you that even God doesn't love you? thanks ps - no worries, I'm working on my issues and have all faith I am healing emotionally - I'm only asking because I want to check out my suspicion that there's a connection between my emotional and physical problems

Would you like to chat about this off site? My email is stedrick@centurylink.net. Susan

I am quite sure there is a connection between emotional feelings and physical problems and I also believe, as you so sagely say, that physicians are beginning to finally recognise this aspect of medicine which has been buried in the huge scientific gains of the last century. I too would be happy to chat off site about it with you. My email is: sally.egdeg@hotmail.com

Dear all In the past years my main triggers are: Cold ( environmental), all kinds of exercise, staying in mountains ( eg 1200 mtr above sea level). So I don't fly. I'm suffering from chronic leakage, with an acute onset. Hiltjo