Adrenaline spikes: Med detective needed, award given

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.

Hi sorry to hear you too are suffering.
What is your BP like?
Have you seen an endocrinologist?
Do you have headaches and excesss sweating?
Sounds like your adrenal glands or a thyroid issue might be causing it.
Hope you feel better is awful to wake up to adrenaline spikes.

Because I did not have an official diagnosis from my doctor. They can't figure it out, so no diagnosis. Mayo won't see me without an official diagnosis. But I need Mayo to figure it out so I can get a diagnosis. It's the ultimate cycle of frustration.

The original discussion was posted February 2018 in the Diabetes & Endocrine Group and caught my attention. I scrolled forwards and backwards through bazillions of screens of comments including volunteer mentors, alumni volunteer mentors and former moderators. The most recent comment is from May 28, 2023. Apparently this ailment continues to be an ongoing difficulty. What if anything can we do to help?

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!

Sierra - since you posted your rushes and tremors, did you find an answer?

Did you ever find out Sierra?

@monarchbfly (I love your handle). I’m sorry my response is so late. I’m still getting used to this. Do you have a primary doctor & / or endocrinologist that could make a referral to Mayo and explain the difficulty coming to a diagnosis for you? Mayo loves a challenge and loves to rise above other medical providers. They aren’t considered one of the best for no reason.

I hope you have found answers since your post. I hope you others seeking help have found what is causing the issues as well. I came here looking for answers as to why I have started having these adrenaline rushes within the last month or so. It is almost every day. I wake up in the am and within an hour it is on with this feeling like this rush of uncontrollable energy. It typically last for a couple of hours at a time and then comes and goes. It seems to pick back up in the evening like it stared in the morning. I have severe RLS that I have been taking methadone for over 1 year now. No real side effects, in fact it works so well I have to set an alarm to take it every day at 5 pm. I take synthroid and have since I was in my twenties (now 58). I am on HRT and have been since I was 38. No issues. I did develop general anxiety some years ago but only take something when it’s really bad. This adrenaline thing does not feel like it has anything to do with anxiety but it sure does not help. I feel like I have to sit down and try to get a grip on these rushes. I remember having an MRI at one point and them mentioning that my pituitary gland had what was called an empty sella but unless I was having symptoms don’t worry. I do have a Dr. visit coming up soon to get answers but disturbing nonetheless.

I am just starting to explore reasons why I have these same symptoms. Possibilities that I have discovered are problems with gut or liver. This possibility was linked to Mass Cell Activation Syndrome (MCAS). Stress or liver function are areas to examine. Just a week of this adrenaline disturbed sleep, but am worthless throughout the day.