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Adrenaline-like surges all night long
Hello, I’m writing in regards to my mother. She is 64 years old and has been suffering for 5 years now. She just wants to be with her grand babies and enjoy them, but this mystery illness tears through her and leaves a shell of a human. It’s absolutely agonizing to watch.
Symptoms: She has severe adrenaline-like surges that wake her up from a sound sleep every single night that continue into the morning hours. They happen during the day too, but are more manageable at that time. When they subside she’s so exhausted all she can do is sleep. She also has gastroenterologist distress with a lot of indigestion that makes it hard for her to eat much.
Medical history: She has suffered with autoimmune conditions most of her life, starting with her body completely destroying her thyroid at age 18. She also has some sort of flare up each month that gives her an ache all over flu type feeling. That has subsided since these new symptoms have come on. She has had her gallbladder removed, and a complete hysterectomy with ovary removal. She has the start of diabetes, but controls it with diet and keeps her A1C low.
Tests: She has been tested for everything under the sun. Paraganglioma/pheochromocytoma, thyroid replacement levels (all the T’s), scoped her stomach (has very red stomach lining), toxic metals, mold, POTS, mast cell activation. She had normal levels on everything. She’s had a full MRI with contrast that turned up nothing.
This is my attempt to help in any way I can, although I feel absolutely useless. Please, if you have experienced this and found a solution, reach out to me. Thank you so much for reading.
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@amarie441 Welcome to Mayo Clinic Connect! I certainly hope we can help you and your mom. We’re not able to diagnose your mom , but we can try to direct you to the right resources. You say that your mom has been sick for about 5 years with stomach problems, has ‘adrenaline surges’ at night, and a history of autoimmune disease.
Here’s an idea of some things you can do:
1. Start a journal. Enter your mom’s medications, medical history, list of doctors, and questions you/Mom may have. Take this journal to all doctor visits
2. Call your primary doctor for an appointment to discuss the adrenaline surges
Make an appointment with the doctor who looked at your mom’s stomach. He’s probably a gastroenterologist.
Make an appointment with her rheumatologist to discuss her history of autoimmune disease.
Go with your Mom to all doctor visits. You will be her strength and second set of ears!
This should be enough to get you going! I’ll also check to see if we have other members who can help.
Will you stay in contact with me and let me know how you’re doing?
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5 ReactionsHi there,
I was diagnosed with secondary adrenal insufficiency, ACTH deficiency, at Mayo endocrinology. I do not make enough cortisol under stress, and I do not make enough at night. Normally cortisol levels fall lower at night. However, if they fall too low, the body goes into adrenal crisis, and adrenalin surges. I have to take extra cortisol at night, in order to NOT have the adrenalin surges. The extra cortisol calms things down, and I sleep better. I also have autoimmune diseases, gastroparesis, etc. It is difficult to test for ACTH deficiency; the morning cortisol levels DO NOT show the disease, nor do many other tests. It is a very difficult, risky and a test only offered at a few places, nationwide. Many doctors don't even understand it, and do not want to test for it. Good luck. I hope you find a solution.
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7 ReactionsHello! I know this response is years later, but I’m reading it for the first time. I’m so sorry that your mom has been experiencing these symptoms. I’m in the exact same boat and have undergone most of these tests too. The only topic I didn’t see mentioned was temporal lobe or complex partial seizures. Has this been looked into? There are certain types of seizures that can cause these exact symptoms. I truly empathize with you and hope she gets some relief.😊
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5 ReactionsI have had these surges off and on since last February. I feel like I’m losing my mind because I can’t get doctors to understand what these feel like. I have a history of Lyme, artery dissections, autoimmune, possible connective tissue issues, given birth twice, and partial hysterectomy. I run and am very active, eat well and take good care of myself. I just spent 10 days at Mayo with several different doctors. My other symptoms are lightheadedness, shortness of breath, exaggerated muscle pain now after working out or running. These surges have gotten worse, wake me up out of a sound sleep. A few times they have even been followed by my whole body contracting and shaking for a few seconds.
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2 ReactionsHello, @merlenz, @ggt and @alimaez, Welcome to Connect. It's great to see 3 new members connect with each other to share their experiences. The member that started this discussion is no longer active but there are other discussions that you may find helpful. Here's a list of discussions and member comments on "adrenal insufficiency" if you want to scan through them - https://connect.mayoclinic.org/search/.
There are also other members who have posted about adrenal surges - https://connect.mayoclinic.org/search/.
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3 ReactionsThank you, John.
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2 ReactionsCheck for thyroid antibodies such as in Hashimoto's disease. Also check iodine levels.
@alimaez I have experienced similar but minor issues for several years. However, about 3 weeks ago I started experiencing what I can only describe as severe adrenaline spikes in the middle of the night that would jar me awake. I didn't know what it was at first but it was extremely alarming. It would happen about 3 times a week and would start as soon as I fell into a sound sleep. After the first week of this I started to assess what was happening in the moment; I didn't know it was adrenaline until the first time that I forced myself to make a mental list the moment I was awoken of all the symptoms and the process. Here's how it would start: jolted away from a dead sleep; a desperate need to get oxygen into my lungs by taking a deep breath (which initially lead me to think it might be apnea but I soon realized that it wasn't that kind of "needing to take a breath", it was more of a need to breath very deeply); a rush coursing through my body, especially down my thighs all the way down to my feet and in my arms (as I say, I didn't recognize the sensation but when I started my mental list I realized, "this is adrenaline!"); I noticed no elevated heart rate. None whatsoever, not even a little bit. Followed by what I now recognize as coming down from the adrenaline spike, which is a complete feeling of my limbs "collapsing". I call it collapsing because I remember thinking that, if I was upright my legs would have given out and I wouldn't have been able to stand. And finally, feeling physically exhausted, my limbs actually felt heavy. I would lift my arms and I could barely hold them up for 2 seconds before I'd have to let them drop. This would happen 3 to 5 more times and would start at approximately 10pm and end around 3am, as which point I would fall, exhausted, into a deep sleep and wake up 3 hours later and have to get ready for work. I mentioned it too my doctor and he didn't say a thing, just stared at me. Then said, "Hmm, well I don't now what that might be...let me refer you to a cardiologist" >:/ I started doing some research on my own and found several articles that helped (from medical websites written by doctors). One of the most helpful was the first one I ran across that used the term ADRENALINE DYSAUTONOMIA. This was from a medical group in California called Lam Clinic. It was an great article called Adrenaline Dysautonomia: A Guide To This Little-Known Condition. I wanted to cry because I felt that someone got what I was going through! This by no means is the end of my journey to figure out what's going on, but this article (and many others, including from the Mayo Clinic website) has given me the understanding of what may be going on in my body and the language to express it properly.
I hope this helps 🙂
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