Hello all - just wanting to see if there is any info out there linking SCLS to hormone fluctuation / peri menopause. My episodes usually( but not always) preceed a period by about 3 days . I am 48 and am definitely experiencing hormone fluctuations with irregular cycle and other perimenopause type symptoms.. Interested to hear from anyone who has had a clear link between episodes and menstrual cycle. Especially interested to hear if there is any evidence of scls episodes stopping once menopause is established, and if anyone has had surgery to bring on menopause and what effect that has on SCLS incidence. Appreciate any information or thoughts.

I can only tell you that my first episode was after menopause but while on hormone replacement therapy. I wonder if the increased fluids that occurs during PMS contributed to your episodes. I was taken off HRT due to pulmonary embolus and have not had any further episodes.

Thanks for your reply - at the moment I am in "wait and see mode", to see what happens next month. At the first sign of the next episode I am to trial oestrogen gel to see if that has any effect ( hypothesis being that a sudden drop in oestrogen could be triggering the attacks??) . How long has it been since your last episode?

I have only had 1 confirmed episode but strongly suspect that an episode of "depression" which sidelined me from work for 5.5 months was also actually SCLS wrongly diagnosed. The two episodes were roughly a year apart. Interestingly, all symptoms began at a time that I switched from standard low dose hormone replacement therapy to a more aggressive approach with "bio identical hormones" which included testosterone. I have always wondered if that was a trigger because my thyroid levels began to fluctuate widely around the same time after having been stable for 20 years.

The very first case of what we know now as SCLS was described in the 1960 edition of the prestigious _American Journal of Medicine_ by a Dr. Bayard Clarkson and colleagues from The New York Hospital/Cornell Medical Center. This is why the malady was afterwards named "Clarkson's Disease." That pioneering case involved "an otherwise apparently normal young woman who on repeated occasions had such a sudden and marked leak of plasma from her vascular bed that she would go into profound hypovolemic shock. The striking relationship of these shock episodes to the menstrual period, a hysterectomy and later a bilateral oophorectomy were performed. For a time she was thought to have been cured by the oophorectomy, but then the shock episodes recurred. Finally, during one period of shock, she died." Feel free to have your physician consult with Dr. Druey at NIH, but as far as I know there is no causal relationship between menstruation (or lack thereof) and the onset of SCLS. It is definitely an illness that strikes men as often as it strikes as women -- and even small children.

Thankyou for your reply - - this is very good to know in case it is suggested that surgery to induce menopause could stop the episodes. Much appreciated . Julie

Hi, I have experienced hundreds of episodes like you are describing. I first started to have swelling episodes with my period every month, since about 20 years of age. I am now 53. For most of my life I thought that thought this was severe PMT. It was also always followed by 3 days of migraine. My legs would swell for 3 days before going down over 3 days. I took fluid tablets to control the symptoms. Gradually over many years the fluid became impossible to control and my periods got closer and closer together. I had a hysterectomy at about age 48 and begged my surgeon to also take out the ovaries, so as to reduce any hormonal ambiguity. Unfortunately the surgery made no difference at all, and the swelling episodes got worse and closer together. I now feel with a lot more information, that I was probably having episodes of mild but chronic SCLS. I definitely however feel that is has been triggered by hormone levels. I think the migraine is caused by cerebral edema. It starts at the peak of fluid just as fluid starts to recede. Now fluid only goes from 100% to 75% instead of back to 0% as it did in the past. This makes it difficult to get a proper diagnoses. Additional information is that I was diagnosed as Hypothyroid at about age 48, and all my hormones levels are at the bottom of the range or under, but not quiet bad enough to be called hypopituitary. I take very high dose direct T3 medication but still have low levels and seem resistant to my own hormone and additional hormone medication. This is still under investigation. I am happy to email with anyone else who has experienced a hormonal connection with their SCLS. I is nice to know i am not alone in these experiences. Please see The mayo clinics review of Capillary Leak Sydnrome http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2947962/ See discussion on Clarkson's patient 'who showed a clear temporal relationship to the menstrual cycle'. see also the discussion on chronic Capillary Leak where they state that '8% of patients suffer chronic hyperpermeability'.

Hi Annmarie Thankyou so much for sharing your experience-it is very helpful for me to hear from you that hysterectomy did not stop the episodes, although I wish it had. I am also happy to talk by email - jodono@bigpond.com -. I wonder if there are lots of women of peri menopause age who have these symptoms but are not diagnosed. Thanks again Julie

Thank you all for the information. Every piece helps me put the puzzle together. I am still hoping to be seen at NIH. Unfortunately, I suffered 2 unconscious falls in May with subsequent post concussion syndrome. It has made daily tasks such as researching and coordinating my care difficult. My neurological testing ruled out seizure and I currently have an implanted cardiac loop recorder trying to determine the cause of the syncopal episodes. I don't know if the SCLS combined with my normally very low blood pressure was a factor or not. Has anyone else ever experienced falls? Both occurred when I leaned forward to get something on the ground. I passed out before falling.

SCLS patients often lose consciousness during an episode of the illness, and it happened to me several times when I was still having them. Fortunately, I never cracked my head. The reason is that our plasma is leaking out of the vascular system, our blood pressure drops like a rock, and our brain doesn't get its necessary delivery of oxygen -- and that's why we pass out. The question is whether you experienced the other markers of an episode of SCLS, see Disorder Details section, because people pass out for a variety of underlying reasons. An abundance of red blood cells relative to plasma (hemoconcentration) is one such marker, as is a drop in the usual level of albumin in the blood. These are indicators that are measured through a catch-all blood test upon being admitted to the ER after passing out.

Actually the sequence was that the episode preceded the falls but was incorrectly diagnosed. I experienced an episode of massive edema following a long flight from Phoenix to Tampa. Ironically, my brother who is a cardiologist, was with me at the time thought that it was simple lymph edema and advised me "lose weight, exercise and exercise". I laughed because I am normal weight and exercise 3-4 times a week. I did try the stockings but they created their own problems, acting as tourniquets. After another flight followed by a long road trip, I developed chest pain and was acutely admitted. I had a sudden drop in hemoglobin, albumin and elevated pancreatic enzymes accompanied by extreme shortness of breath despite a nearly normal oxygen saturation. My pancreatic enzymes were elevated and I was admitted with supposed pancreatitis since my cardiac work-up was normal. When doing the abdominal studies, it was noted that I had a pulmonary artery embolus. The next day I was told it wasn't there and sent home. The symptoms continued and I sent for my medical records and saw the lab abnormalities and the fact that I had bilateral pleural effusions as well as fluid around my gall bladder and liver. Eventually I found qualified medical professionals who verified there was no venal cava clot or clots any where else. I am a Clinical Nurse Specialist so after researching my symptoms I took the information to my PCP. He continued to work with me but I suffered the two falls in May. It has taken until now to get to the immunologist and neurologist who is treating my traumatic brain injury. The immunologist is quite reluctant to start any prophylactic therapy because the edema is gone and my labs are normal. I also saw a hematologist for testing. She also declined to do any therapies at this time.

In regards to syncope and pre syncope , my daughter who suffers from SCLS developed POTS after her most severe episode of SCLS . Pots is a type of dysautonomia that can occur after severe illness. She is much better as far as the pots goes , but she definitely still has some symptoms . In one of the comments above someone has asked about syncope/ passing out . I don't know if this info helps , but thought it was worth mentioning .

I developed POTS in the lead up to my first clinical admission, but didn't twig. I just new that things were 'not right'. After T&T, I was worse. After IVIG, I felt a gradual turn around. It has taken a full year of graduated training to gradually get it behind me.. Though never fully, and I don't trust this condition, but all the same, IVIG and physical exercise seem to be the only way to get on top.... And the exercise is up to me and me alone. Oh, and theophyllin made it VERY MUCH WORSE.

Hi, Almost every episode of capillary leak is accompanied with a major fall. I simply pass out wherever I am no matter what I am doing at the time. This last time happened about a week ago. Standing in my bathroom washing my hands, bang, fall forward smash the upper portion of my nose and forehead. Ugly swelling brushing and abrasions! X-ray ruled out any breaks once again I am lucky! I have been sitting up on the edge of my bed and fallen hard into the nightstand and broken many ribs. Passed out in the shower nailed my tailbone,legs blocked the drain and the stand up shower flooded the entire upstairs bathroom, the ceiling in the family room and part of the kitchen collapsed due to water damage. I was ok but the bill to repair the downstairs was enough to put me right back into shock! Oddly enough I have become used to this idea of passing out when my attacks begin. I don't suppose it is a "normal" or common occurrence. This last trip to the after hours clinic was weird. The entire female staff was giving my husband dark looks and ugly stares and they were a little more than slightly rude to him. When we left with the good news that nothing was broken, my husband said I'm going to tie you to the bed or completely cover you in bubble wrap. Those women looked at me like I was hurting you and like they seriously wanted to hurt me. YIKES So how often do others have episodes like this? Is it as common for anyone else as it is for me?