I am a 40 year old female and I live in the Seattle/Tacoma area of Washington. I was diagnosed with CAH at 19 years old but was never told of the dangers of discontinuing my dexamethasone or not being on a high enough dose. Because of this lack of information I had 2 adrenal crises - one in 1993 and the 2nd in 1996. Both times my general practitioner thought I had meningitis because I was throwing up, lethargic and had an excruciating headache and spinal pain. Both times I was hospitalized for four days. After the second episode I wasn't recovering after getting home and was lethargic, lack of energy, sick to my stomach and losing weight. I called my endocrinologist (former) and he didn't say anything about changing my dosage (I was on .25 at that time). I knew something was seriously wrong and that I was in trouble. My G.P. and my endo both poo poo'd my ideas. Finally I told my endocrinologist that I wanted to come in for a blood draw and he agreed. I had to have someone drive me to the office as I was too weak to even drive at that point. My endo did the blood draw and within several days he called me and said my dose was too low! Big surprise! I was so angry that no one knew what to do. I feel like I'm lucky I didn't die. (I'm a divorced mother with a 12 year old daughter). I have read messages from other late onset folks but the understanding I've gotten from what I've read is that late-onset CAH'rs don't go into crisis, and I have. I was never told (until this last year) about stress dosing, about wearing a medical bracelet, or carrying solu-cortef. I always carry a few extra dexamethasone in my wallet too. I have been working full time and going to school full-time to finish up a teaching degree so I certainly have been under stress during the last 3 1/2 years that I've been in school. I have had to drop classes several times because the stress has been too much for my health and when I had the crisis in 1996 I had to take a medical withdrawal for the semester. I have felt (because of a lack of information about CAH) that I've been a weenie because I haven't been able to keep up at times. Others really don't realize how hard this stuff is on your stamina. Even the endocrinologists I've had in the past have said that emotional stress has nothing to do with CAH, that it's only physical stress that affects your stamina. Well, I'm here to say that's not true! When I think of the years and years I had headaches every day (starting at about age 14) I also had some of the back pains I've heard others speak about and the depression/anxiety. It makes me want to cry just thinking about it. All this could have been controlled with proper medication and assessment from a qualified endocrinologist. This past year I have found an endocrinologist (Dr. David McCowen) who told me I am lucky I didn't die in childhood. I was only diagnosed at 19 because I had never had a period. (of course I had the acne, hair growth, low stamina and headaches) Dr. McCowen has been a godsend and now due to not really feeling that great even on .5 of dexamethasone, he has raised my dex. to (1).5 plus (1/4) of a .25 at bedtime. I don't seem to get the tightness in my chest that I did with the lower dosage. I also was found to have hypothyroidism, so I am now on .05 of levoxyl per day. I'm feeling a lot better, not perfect, but better. My 39 year old brother is going through some of the same symptoms I had namely severe headaches that last for days. I have been all over him about going to get tested for CAH. He works at Boeing and with the medical plan his primary care physician thought he was nuts when he said his sister has CAH and he would like to be tested. His Dr. couldn't believe headaches could be a symptom (he's literally laid out with them, can't work, no energy). So I have made an appointment with my endo for my brother, but would you believe his G.P. doesn't want to give him a referral, even though my endo is preferred on the Boeing plan! It's nuts! I feel so bad for my brother. Has anyone out there had similar symptoms and problems with late-onset CAH? Have a lot of you had headache symptoms? What other symptoms do men have with late-onset? Is there anything else I should know? I have learned so much by finding this message board along with talking with Kathy from the Magic Foundation (she was the first one to give me any information (about a year ago)- what a godsend she was!) I feel like I'm not alone for the first time. (I have never met anyone else with CAH). I would like to converse with others that have late-onset. Please respond back if possible. Sincerely, Susan A.