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. 🙁 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 😉 Okay, seriously. I'm not in a good place right now.

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This sounds like dysautonomia. There are many causes and types. Here is a quick overview from the Cleveland Clinic: https://my.clevelandclinic.org/health/diseases/6004-dysautonomia
You can also google the term and look for info from many different medical institutions.
I had this after a bad reaction to a TDap vaccine. Dr thinks Covid vaccine started it, then the Tdap vaccine really got me. Took me two years to recover.

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This happens to me as well.
I wake up like clockwork every morning at 7am - feeling like I am full of adrenaline. It's a horrible feeling.
Then a get waves of adrenaline like surges throughout the day. I can only work for 3 hours - most of that time I feel agitated / restless. And it peaks so much that I cannot work and have to go rest. My condition is ruining my life. It's really bad. I haven't been able to relax / take a nap in 3 months. I don't know what is happening. Getting more blood work done soon. Don't have much strength left.

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Profile picture for gedro @gedro

This happens to me as well.
I wake up like clockwork every morning at 7am - feeling like I am full of adrenaline. It's a horrible feeling.
Then a get waves of adrenaline like surges throughout the day. I can only work for 3 hours - most of that time I feel agitated / restless. And it peaks so much that I cannot work and have to go rest. My condition is ruining my life. It's really bad. I haven't been able to relax / take a nap in 3 months. I don't know what is happening. Getting more blood work done soon. Don't have much strength left.

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I accidentally replied to my own comment. Could not find delete - so I am over-writing it here.

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@sierrawoods have you found any answers? It sounds similar to what I have been dealing with. Morning rushes between 4-7. Chills and nausea for almost two years.

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Profile picture for tula17 @tula17

I’m going to give this a go, all of you have similar symptoms, have any of you been on any psychiatric drugs and come off them cold turkey, or any medications that you have abruptly stopped, the reason I’m asking because you can go through awful withdraw. Some of the symptoms your describing sounds like withdrawl, I know this is a long shot but can be a possibility.

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I agree. My symptoms seem like a withdrawal. The only meds I was taking and am now off are topical steroids and flonase.

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Profile picture for helene0886 @helene0886

@sierrawoods have you found any answers? It sounds similar to what I have been dealing with. Morning rushes between 4-7. Chills and nausea for almost two years.

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Four years of this between 5-7 every am.
Sicky,anxiety feeling then the waves and sweats. I drift off and have dreams that feel like "bad trips" or fear.
I'm getting desperate...

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I’m at a loss as to how to respond to this discussion. It originated 7 years ago, has 22 pages now total and is still going. Many of the members responding are familiar names. I may have contributed something myself over the past 7 years / 22 pages. Unfortunately there are still more questions than answers about this condition. Please everybody keep sharing your experiences. We are here to support and encourage each other. Nobody should be feeling alone.

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Profile picture for monarchbfly @monarchbfly

I experienced symptoms similar to SierraWoods condition. I'm 54 y.o. post menopausal woman with previously excellent health (runner, weight lifter, paddleboarder). It started in Sept/Oct 2022. Mine also included Frozen Shoulder, my guts felt inflamed, my eyes and skin felt burning, light and noise sensitivity, I didn't feel sensations of sleepyiness or hunger just felt "bad" instead, ringing ears, Reynauds phenomenon, crushing insomnia, felt internal tremors, as well as the adrenaline spikes and fluctuating BP and HR, etc. Very low night time BP 89/48. Urinating a lot at night. Sitting down during day my HR 52, immediately standing HR 102. Sit back down and it's 58 again in seconds. No one could figure it out. I saw endocrinologist, 2 PCPs, rheumatologist, cardiologist, gynecologist, dermatologist, ophthalmologist, etc for the various symptoms. All my tests and labs came back relatively normal. Slightly higher morning cortisol, slightly higher norepinephrine/epinephrine. Small inconsequential nodule on thyroid. My heart echo was clean, heart rhythm recorder was clean, wore blood glucose monitor for weeks and it was clean, rheumatology I was negative for autoimmune, etc. Tentative diagnosis was Postural Orthostatic Tachycardia Syndrome (POTS).
My own personal theories of things that may have contributed to or caused to my "illness":
-I started feeling generally bad a few months after getting the Pfizer Covid vaccine Spring 2021. Not full blown symptoms as described as above, just off and a general feeling of unwellness.
-This also started right when I finished going through menopause. Hormone related?
-I had my genetics tested. I have the COMT and MTHFR gene variants. This may mean I do not methylate well, Medications also build up in my system as I am a slow metabolizer. Explanation: https://www.drlamcoaching.com/blog/complete-guide-to-the-comt-mutation/
-I was on oral conjugated estrogen and progesterone. Did great at first, then increasingly bad over 3 months (see COMT gene link above). I was a poor methylater. Stopped cold turkey after waking to a HR of 155 at 3 a.m. Thought I was having a heart attack. Went to ER. All tests normal. One month later, all of the full blown symptoms described above started. Endocrinologist suggested I may have gone through Endocrine Withdrawal Syndrome after stopping the estrogen and progesterone which he said feels like you are withdrawing from opioids. I googled it and the symptoms were similar (I was not on opioids).
-I was on a diet Spring of 2022. I consumed a TON of vitamin and minerals through nutrition bars, high protein meal replacement shakes and pre-packaged foods for 6 months. May have caused a buildup in my system?
-I was on a 5 day course of broad spectrum 875/125 Augmenting antibiotics early August 2022. Stopped after tachycardia attack. They may have wiped out my microbiome and my gut may have repopulated with "bad" bugs?
-I got a Tdap booster vaccine late August 2022. All hell seemed to break loose a month after that, but could have been coincidence.
Three weeks ago, I finally started to feel normal with no symptoms. My frozen shoulder also disappeared around this time. (That is allegedly connected to hormones). I finally saw my first neurologist four days ago. Very highly regarded doctor. He said I have orthostatic intolerance (POTS) but did not do a tilt table test because I am getting better and the test would probably be inconclusive. He also said based on all of the information I gave him that this all started with the Covid vaccine and the Tdap booster may have aggravated it. He said based on the data they are getting from Northwestern University, right now the #3 cause of neurological injury appears to be Covid or Covid vaccine related (he is not against vaccines).
I don't know how I feel about that. I ran it past a neurologist friend and his reply was that the other neurologist has no idea what actually caused my symptoms. I also realize SierraWoods problem predates Covid and the Covid vaccine. But that is not to say that this could be a viral thing in general. No wonder nobody can figure any of this out.
In my gut, I think my "illness" is related to hormones and/or an enzyme that I usually have that I am no longer making, but not sure why. Probably due to declining estrogen and hormones. It's also possible I had more than one thing and they all dog-piled and it was more than my system could handle.
Anyways, after eleven months, I have had no symptoms for two weeks finally! I have been making very slow progress since January and finally am getting to days with no symptoms!
Things I did:
-I never took any of the medication that any doctor prescribed to me. I thought the side effects of medication would make things worse since I know myself and know I don't process medications well. They mainly wanted me to take beta blockers and fluid boosters to improve blood volume to get my BP higher.
-I wasn't sure if I was getting enough iodine because I was very low/no salt and it was sea salt. I had very low blood pressure, so I started drinking water with iodized salt in it. This is basic Postural Orthostatic Tachycardia Syndrome protocol, for the most part. It helped to increase my blood volume and get my blood pressure up.
-Rest
-Stopped all caffeine and alcohol
-Stopped taking all supplements except vitamin C (and I was not on any medications except vaginal estrogen cream, kept that). Vitamin C is a cofactor in catecholamine synthesis, converting dopamine to norepinephrine, and synthesizing vasopressin, etc.
-Stopped eating dairy which is theoretically inflammatory
-Started eating a lot of high nutrient dense foods. 1lb spinach, 2 lbs cherries, 2.5 lbs fresh clams in shell, sardines, bananas, etc.
-Forced myself to start exercising since January with walking (my HR was 130 with a simple slow walk). I made progress over months. I was out walking in the park with all the old people in walkers not going much faster than them. But slowly I improved and was able to walk for longer. The big change for me came when I started weight training while seated.
Hopefully, I will continue to improve and stay symptom free. We shall see, but I am hopeful to have even got this far!

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@monarchbfly how are you doing - I’m 62 and very similar everything you had started w me age 59 - what I know now is all reaction to not having hormones and did something to gut microbiome and gut controls everything ! Denise

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Profile picture for Cheryl, Volunteer Mentor @cehunt57

I’m at a loss as to how to respond to this discussion. It originated 7 years ago, has 22 pages now total and is still going. Many of the members responding are familiar names. I may have contributed something myself over the past 7 years / 22 pages. Unfortunately there are still more questions than answers about this condition. Please everybody keep sharing your experiences. We are here to support and encourage each other. Nobody should be feeling alone.

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@cehunt57 I’m 62 come to understand it’s all lack of respect for women’s bodies and all of this starts in our mid forties - women inevitably go through menopause. There’s no getting around it and there has not been enough scientific clinical studies when women with hormones stomach fat and gut Microbiome. There is a doctor in California Dr. Felicia Gersh she is the only one that is describing all of this to a t.

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