Adrenaline spikes: Med detective needed, award given

Posted by sierrawoods @sierrawoods, Feb 20, 2018

I'm desperate for help. If I was rich, I'd pay a million $ to get answers. It's hard to summarize: I am a 59 yr old woman. 8 yrs ago I started having what feels like strong adrenaline rushes during the night and especially in the early morning. They disrupt my sleep making me severely sleep deprived. It used to happen a few times a month but in the last year, has been happening daily. This is not as simple as anxiety. My life is not particularly stressful compared to years ago and I've always handled stress well. Physical symptoms come first, then anxiety from adrenaline comes after. On rare days, If I sleep through the night, I wake with excess adrenaline and will be hyper the whole day and evening. Sometimes, I will have a severe "crash" in the afternoon with all kinds of symptoms that have me couch-bound. I take a tiny dose of Amitriptyline (10 mg) before bed to help with sleep, but it's obviously not working well enough. I am on Synthroid for non-Hashimoto's Hypothyroidism since 1996. Despite being 59 yrs old, I am not yet officially in menopause (last period was May 2017). TSH, fT4, fT3 are normal. Urine catecholamines (epinephrine & norepinephrine) are normal (although that does not necessarily reflect what is in the brain). Plasma ACTH is normal. I've tested negative for autoimmune disorders. Cortisol was high a few years ago (34.3 mcg/dL) but it's currently high-normal. DHEAS normal. Accompanying the start of this was phantosmia and occasional RLS. My diet is excellent, including a few good supplements. Until last yr when it started happening daily, I was exercising 6 days/wk. I cannot tolerate it any more - any exercise beyond mild cardio/aerobic causes an increase in symptoms. I meditate and have tried all kinds of herbal teas. I've experimented with different possible solutions, to no avail. I'm a voracious researcher (only legit sites) and still cannot figure this out. I'm normally a positive, active, happy person who loves to help others but this is ruining my life. I cannot make any plans, cannot get my work done, cannot even visit friends. I had to stop my volunteer work with children. šŸ™ I'm starting to become depressed and hopeless. I've been to a total of about 9 doctors about this problem and they just shrug their shoulders and send me hope with more disappointment. The only help offered was an addictive prescription for benzos but I refuse to be treated for something without knowing the cause. Ideas: an atypical tumor on my pituitary or adrenal glands? Maybe, but I can't get a doctor to order the necessary MRIs. Perhaps not endocrine but a sleep disorder? High A.M. adrenaline is typical for sleep apnea but it should not cause these severe symptoms, and I really do not think I have sleep apnea (I don't have other symptoms). A neurological disorder? Maybe, but I can't get a doctor to order an MRI of my brain to make sure my pituitary gland is okay. If you've gotten through this far and you have any thoughts, please chime in. If your idea leads to a proper diagnosis and I get well (or treated properly) I will be your slave for life šŸ˜‰ Okay, seriously. I'm not in a good place right now.

Interested in more discussions like this? Go to the Diabetes & Endocrine System Support Group.

Glad I found this old thread. I've had symptoms like Sierra's for almost two years, which I posted to the Anxiety group.
And while anxiety certainly contributes to problem (which began after a canced diagnosis and concurrent traumatic break-up with my abusive partner...) endocrine issues are also at play. I am "subclinical" hypothyroid, and had to stop estrogen HRT (which I had been on for way too long...)abruptly at my uterine cancer diagnosis. Then the total hysterectomy removed the ovaries.
I've offered various psych meds but prefer to work this out naturally. GABA supplements help a bit, and I've just started phosphatidyl, which may tampt down cortisol. I have a 10 mg. propanolol that kinda sorta helps, but then makes me a bit draggy the next day.
Anyway, thanks to all . I've gone through the whole thread and it's good to know that at least I'm not alone. Best of luck to all of us.
Eileen

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@sierrawoods I am 38yrs old and desperately searching for answers. I stumbled across your post and am wondering if youā€™ve had any answers. Your symptoms/consequences mimic mine. I would also pay a million $ if I had it. Help.

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@sierrawoods

I will add this: If I get a solution to this problem, I will be so overjoyed that I will spread the information widely...here and everywhere I have the opportunity. These boards are wonderful for patients and I look forward to getting more involved. People are suffering and we need to support each other. This is a great way to do so.

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I have the same symptoms and diagnosed with mild hyper mobility and orthostatic intolerance with chronic adrenergic overdrive according to my tilt table test result. If you have these symptoms you are hyper vigilant too and all these generally related to childhood traumas. Contrast showering, compression stocking, electrolytes, breathing exercises (please read Breath by James Nestor) are helpful. Most importantly get your traumas sorted. I have been trying reiki, hypnosis, talking therapies, NLP, neurophysiology therapies with no luck so far. I started doing exposure therapy myself recently. It seems to be working for 2 weeks then I am back to high alert zone.

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@kdubois

Hello @sierrawoods... after taking myself to Mayo, we learned that I had been misdiagnosed by my home medical center with a rare endocrine condition, and Mayo figured out that all of my symptoms were caused by medications/drugs building up in my body for 12 years. They figured out the genetically, I don't properly-metabolize most medications, and the result of these drugs building up inside of me showed clinically as endocrine symptoms. Have you had pharmacogenomics testing done?

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Can you please tell me more about this? What were your symptoms and what tests did they run? I tried to be seen by Mayo Clinic but was rejected.

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@stevetaylor721

Good luck to you and I hope you get your answers. Iā€™ve got some testing starting today that I hope will show something. A full abdominal CT scan. Iā€™ve continued to struggle each day and feel like I am getting further from recovery, not closer. The last few days Iā€™ve woken up with a ā€œbuzzingā€ sensation throughout my whole body, pounding head and then extreme jitters and nausea. Unfortunately this has not gone away at all. It may get more subtle during the day, and I have periods where I feel relatively better, but it comes back to really whack me. I am absolutely worn out physically and mentally, havenā€™t been able to go back to work for more than a couple of hours at a time, and am very concerned about providing for my family as leave and money are running out- so I hope for an answer soon! Iā€™m not sure the local doctors I have seen have the resources or experience to figure out what is going on with me, but I know my primary is trying. It is just a very complicated case and I do understand that as I was an active and healthy 48 year old until 8 weeks ago. The endocrinologist I saw told me the local docs would be unlikely to have much luck and tried to get me into Mayo, but they wouldnā€™t take me in so I just have to hope someone here sees something soon as I am running out of hope. I hope you get your answers and the endocrinologist has some ideas for you. Good luck and please keep us posted!

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Why wouldn't Mayo see you?

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Iā€™m not sure of all of your symptoms, but I believe I have the very same thing you have. Iā€™ve had mine for 4-5 years. But I have mine continually all day long and all through the night. With mine, I break out in a sweat, and my heart rate goes up. I have 6 to 15 episodes (what I call them) per night and then continually all through the day; at least 2 an hour.
Iā€™ve been to numerous doctors and no one can figure it out.
I too donā€™t know what to do. I am not suicidal, but I would not shy away from death. Itā€™s a terrible existence.

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@stevetaylor721

Good luck to you and I hope you get your answers. Iā€™ve got some testing starting today that I hope will show something. A full abdominal CT scan. Iā€™ve continued to struggle each day and feel like I am getting further from recovery, not closer. The last few days Iā€™ve woken up with a ā€œbuzzingā€ sensation throughout my whole body, pounding head and then extreme jitters and nausea. Unfortunately this has not gone away at all. It may get more subtle during the day, and I have periods where I feel relatively better, but it comes back to really whack me. I am absolutely worn out physically and mentally, havenā€™t been able to go back to work for more than a couple of hours at a time, and am very concerned about providing for my family as leave and money are running out- so I hope for an answer soon! Iā€™m not sure the local doctors I have seen have the resources or experience to figure out what is going on with me, but I know my primary is trying. It is just a very complicated case and I do understand that as I was an active and healthy 48 year old until 8 weeks ago. The endocrinologist I saw told me the local docs would be unlikely to have much luck and tried to get me into Mayo, but they wouldnā€™t take me in so I just have to hope someone here sees something soon as I am running out of hope. I hope you get your answers and the endocrinologist has some ideas for you. Good luck and please keep us posted!

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I would expect that they have checked all your vitamins and minerals. Youā€™re mentioning some things my mother had where she had buzzing, and like her skin was crawling, and what she called waves would come over her and through her scalp and her skin. She nearly died. They found out that four or five vitamins were completely bottoming out (calcium, potassium, some B vitamin and 1 or 2 more) and then coming back up a bit and then going back down. She stayed on vitamin therapy daily for 18 years till she passed. I just thought Iā€™d mention it.

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@hopscotch

I would expect that they have checked all your vitamins and minerals. Youā€™re mentioning some things my mother had where she had buzzing, and like her skin was crawling, and what she called waves would come over her and through her scalp and her skin. She nearly died. They found out that four or five vitamins were completely bottoming out (calcium, potassium, some B vitamin and 1 or 2 more) and then coming back up a bit and then going back down. She stayed on vitamin therapy daily for 18 years till she passed. I just thought Iā€™d mention it.

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Do go and see an endocrinologist and get them to run some blood tests.
Too many times ,woman are diagnosed with anxiety when it is actually something physical driving it!!
I had this awful experience of not being believed by 3 Doctors, finally diagnosed with Conns disease ( adrenal glands)
Keep pushing for answers!

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I recently developed a version of this, I am 50yo male, and a month ago I started waking up to big, shiver-inducing adrenaline spikes, usually coming on gradually in the 30-60 minutes after waking around 5 or 6. I ended up seeing a doctor and even ended up in the ER for it. It plagued me from April 25-30, then it subsided for 3 weeks, and then came back in force May 20-25 (today) and I have no idea why it abated.

Symptoms are severe shivering, dread, urge to move around, urge to seek help, very sweaty hands and feet, dooming/health anxiety, frequent urination, same basic symptoms of intense fight or flight being triggered without a good reason. It started out happening gradually over an hour after waking naturally in the AM, lasting from 3-4 hours each time, and then now it has progressed to actually waking me up at 1:30 am, 2-3 hours into sleep.

Of course, blood tests showed nothing so I have no idea how to proceed, other than working on my coping and wondering what made it go away for 3 weeks. I do have a hydroxizine scrip which helps, but the trauma of waking up to fight or flight is formidable in itself so I worry this kind of thing can be self-reenforcing if the cycle is not broken. Also no idea why it moved from "after I wake naturally" around 5am, to "now we're going to do this after your first 1-1.5 sleep cycles."

I'm getting therapy for it, but as kind of a skeptical person, I'm reluctant to jump to "emotional causes," like unresolved trauma, because my work and family life are happy and relatively stress free, and I note that I feel pretty otherwise calm and unworried now when it happens--except for the fact that it feels "like an EMT has shot me full of adrenaline to restart my heart," which of course ruins sleep.

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It could be amitriplanine It can do weird things and it is an antidepressant, they do use it for sleep off label, or has this been happening before the amytripaline. Or it could be a mixture of all the medications your on. There are side effects to most medications.

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