LBUQUOI

Hi Tracey, Have you had your adrenal glands looked at and tested? Aldosterone levels? I have almost all the symptoms you described only not on the same level that you have them. My aldosterone was low. I've read that either my adrenals don't make enough hormone or I don't absorb it. At any rate, the lack of hormone affects my "Automatic Nervous System". All the symptoms you describe are something that is run automatically by your body without you thinking about it. Your adrenals play a really, really large part in that system. I'm also reading that the aldosterone test must be done properly for a true level. It's different from your routine tests. I don't think mine was done properly, but even so, my levels were low. My symptoms go through spurts. This week has been terrible. Last week was good. I am trying to incorporate a routine that is supposed to help. It does. Eat within 1 hour of waking. Eat protein. Eat every two hours; protein. Stay away from sugars, stimulants. Take my vitamins, specifically, C, B5, Multi, B12, E. It helps when I can get myself on the routine. I'm a coffee fanatic, so it's hard to stay away from the coffee. I read too that I should make changes one at a time so I know what works and what doesn't. Hope that helps.

NeverGiveUp, I hope you can be cured too! I hope everyone can. I'm thankful for all your responses.

Oh my, I didn't realize until reading your posts that my itchy ankles could be due to POTS. I've never been tested for mast cell, so I can't comment on that. I've only recently found out that I have POTS and adrenal insufficiency. I've been swelling (pooling), mostly in one leg since age 38. I now pool in both. But, this year, I began the horrible itching. It's only in one ankle at a time. Could be the inside, could be the outside. Nothing helps. I have to stop myself too, or I'll scratch myself silly! I eventually fall asleep too. I've always been itchy all over. I thought I was just sensitive. I worry that people will think I have cooties, lol, I scratch so much. The ankles are horrible though. My son and I have broken out in hives quite a few times for no apparent reason. For me, it starts in my scalp and then to my trunk and into my extremities. I itch EVERYWHERE! My son's episodes have been when he passes out. The hives resolve on their own for both of us. He doesn't itch because he's passed out and the hives go away by the time he comes to. I don't know what causes the hives or the itchy ankles. I'm glad to know other people have the same issue. We might all look like hairless cats before long!

Oh my goodness! You both (last two posts), have helped SO much! Thank you! My son's friend's symptoms sound exactly like 2nd son's. All her tests for seizure activity are normal, but yet she has grand mal seizures, or maybe like Kelly said, they are actually convulsions. I think my best friend actually has epilepsy, but heat is THE main trigger. Also, when her blood pressure is low because she isn't staying hydrated. I can't wait to share. I know that my son's friend is just so frustrated. Her adult life is just beginning. She is about to go to college and she and her dad are so worried. The only trigger she knows of is heat. I bet that dehydration is also a culprit. I didn't think about that one. I told them about the clinic at Vanderbilt. I hope they can go. My son hasn't had a syncope spell in quite some time. Last year, I think. He postures when he has one. His feet and hands turn down like when an animal is dying. His eyes roll back. It scares me so much. My oldest just goes white and his eyes roll back. His syncope is pretty normal, sort of, no seizure activity. Weird. Just weird. Thank you all so much for shedding some light on things. They are beginning to make sense now.

Much of what I have read so far shows that potassium alterations are directly due to whether or not you retain salt or waste salt. They go hand in hand. Your adrenal glands might be off on producing aldosterone or your body absorbing aldosterone. I googled adrenal insufficiency because I can't retain salt in my cells. It sits with water in between my cells (causing swelling in ankles), and so I probably have potassium alterations too. Haven't been tested yet. I did get tested for aldosterone levels. Cortisol and other things were tested too. Hope that helps.

Wow! Thank you for the info. I will definitely look into testing my son. I seriously think that adrenal insufficiency is making their seizures worse. My friend can't even do simple housework. If she gets the least little bit hot, she's out with a seizure. She's controlled by numerous medications, but she still has some where she just loses consciousness. No jerking and such, thank the good Lord. If anyone else can shed some light on seizure activity, I sure welcome anything that will point me to a path to research. Thanks everyone!

Do any of you have seizure activity with POTS or adrenal insufficiency? My son has a small type of seizure when he passes out. One of his friends from school, a girl, has been having seizures now for about a year. She has both POTS and adrenal insufficiency. Both kids are 17. My best friend has seizures when she gets the least little bit hot. I don't think she has POTS, but maybe adrenal insufficiency with very low blood pressure. She began having seizures from a case of meningitis. Any comments? Thanks!

I think I have always had this. I can never remember liking any type of athletics because they make me feel so bad; chest pain, dizziness, headaches, shortness of breath. I believe my grandfather had it and one of my sons may have it. One of my sons passes out at the site of blood or if he has an injury. He also stays awake until early morning and then sleeps half the day. Maybe a mild case of POTS/adrenal insufficiency. My other son sleeps like crazy. He has been passing out and having a seizure type event since a stomach virus at the age of 5. I think he was also born with POTS. I believe he got hot like you do right before you throw up. He threw up and then passed out cold while having a small seizure. Scared me silly. He since passes out whenever he is injured or sick. He is now 17. He has learned to cope and keep from hurting himself before he passes out by sitting or lying. He and I both break out in hives for no apparent reason. I come close to passing out a lot. I am able to fight it and usually win. I guess diagnosis came this year (I'm 44), but not formally. I was researching my symptoms and had a few tests done. I self diagnosed. I'm a nurse and found that I fit all the symptoms of POTS and adrenal insufficiency. Blood tests confirmed the adrenal issue. A stress test confirmed POTS. I was in a full run and my pulse was 184 while my blood pressure was 84/50.