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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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No Brakes on Adrenaline

xks201

Senior Member
Messages
740
Does anyone else feel like they have no proper ability to lower their adrenaline when it spikes in response to a stressor?
 

shah78

Senior Member
Messages
168
Location
st pete , florida
Hi, Yes me. I never noticed this ' issue" as a real "being-a-human being issue' until I read my methylation snps. LIGHTBULB!........ 2 homozygous COMT snps and one homozygous MAO snp plus countless heterozygous ones. THOSE COMT's put everyone of my (first) 58 years in focus. No ability to shut off my adrenaline. Thus,my life /spiritual assignment: learn to shut it off with my mind, since I can't rely on my body to do it.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I know mine with this illness doesnt act normally. Once it goes up, I can be overloaded with it for hours.

I get very angry with my friend if he thinks its funny to give me a scare, as I can end up suffering the after effects of that for 2-3 hrs. (my 24hr nor-adrenaline tests are out of normal range, high).

The way I try to deal with this adrenaline issue, is to take care not to go setting it off in the first place!
 

PNR2008

Senior Member
Messages
613
Location
OH USA
Recently I have had a stress test in response to a treatment for POTS. I gave the test my all and paid dearly for it, three days in bed with excruciating leg and arm pain and a weakness that makes me feel like I'm in the throes of dying. It seems a little better today but I'm still afraid of walking any distance or standing too long or going anywhere.

My point is this: when does the treatment cause more pain than the disease? In this round of OI treatment I have had the fourth tilt table test (since the last was 14 yrs ago), which caused confusion, pain and anger and kept me down for a week from a routine that's nothing to be proud of in the first place. Then a stress test with injections only had me gasping for air and was cut short. Also another treadmill test to check out blood flow in my legs which wasn't directly related to OI but to the pain I have in my legs. The last test (I hope) is a Hemodynamic Lab.

I know I'm lucky to get such a thorough work-up and at a great hospital with a good plan for POTS but I suffer so much from the info-gathering as I do from the disease itself. If the plan works out and I'm spared suffering in the long run, it's worth it but you know how things go in this illness. Still I should be grateful for donating the use of my body for the greater good even though I'm paying for it.

I should but right now I'm not. I hurt too much and feel like hurling 4 letter words at everyone I can think of. If this is the suffering the sisters warned me about in Catholic school, then I should be absolved from any futures sacrifices for Lent for the rest of my life. Yes I know that sacrifice, discipline and good works are crucial to soul growth but the words in my mind would make a harden criminal widen his eyes. Yes Hell Hath no fury, than a patient scorned.
 

anciendaze

Senior Member
Messages
1,841
My case may or may not be typical, there are just too many weird things about this disease. I show evidence of low cortisol in mornings, and problems shutting off adrenalin after I've been awake for a while and made some efforts. Tests for cortisol over 24 hours appear more or less normal, but there seems to be a substantial phase-lag. This also translates into more or less constant jet lag while staying put. I can fly west by three time zones in a day without much problem, (except for the stress of the flight itself.) Flying east is always a problem.
 
Messages
2,565
Location
US
When adrenals are overworked and failing, we alternate between high cortisol and low cortisol. Then they fail and you have low cortisol only. I believe I have the high and low state. Testing saliva through the day can tell you your cortisol levels. The other tests don't tell you much, if you are seeing one time saliva cortisol level or a blood test.
 
Messages
44
An excessive stress response and inability for the adrenaline system to stop characterizes my problems. I feel as though my condition is a hybrid of CFS and PTSD (Post-Traumatic Stress Disorder). On one hand, I am more functional, particularly recently, than many others with CFS in that I can leave my house and am able to be physical if I am cautious about my activity -- and sometimes if I'm not as well. I can go on hikes and not get PEM. Yet at other times, I will feel a PEM burn for weeks through my body, especially legs and arms, from less activity.

Meanwhile, what is much more present is pain and tension in the region around the base of my brain and often extending into my chest. When I'm agitated with stress it gets extreme, and if I have a genuinely stressful situation or conflict it can become debilitating. Mild shocks feel extreme. Even something minor, like an error typing, which in most people is not a noticeable source of stress, causes a shot of adrenaline in me. A bump in the road while in a car sends a blast of adrenaline through me, like a bomb went off. I can't decide whether it is the gas being put on (sympathetic nervous system is too strong) or that the brakes don't work (parasympathetic system is too weak).

It does seem as though the excesses of the nervous system are what leaves me weak. I somewhat alternate between wired and tired, as though the wired periods drain the body, and then a period of exhaustion follows, until there is enough adrenaline/other factors to create the wired/tense feeling again, in a relentless cycle.
 
Messages
15
@DataDude I have similar concerns, though I do not have the physical pain. I do have periods where I feel normal, and periods, where I am mainly lying down, and periods inbetween. But though I can have PEM, 80% of my crashes seem to be stress related, and when I am feeling unwell, I feel like I have no reserves to handle stress whatsoever, even though I know its not necessarily something to be concerned about.

The thoughts about adrenaline not turning off is interesting. Indeed I have survived for years in the workplace surviving solely on adrenaline for meetings and deadlines, and comatose at home. I will look into some of the the things mentioned above about methylation etc..
 

soxfan

Senior Member
Messages
995
Location
North Carolina
So I am going through an intense period of extreme stress...We moved 17 months ago from NH to NC and now we are in the process of moving back to NH...

I am curious if this type of stress where I know the adrenaline is running rampant can also cause intense drowsy sleepiness....For the past 3 or 4 days I have been struggling to remain upright as I try to start packing etc...this feeling of drowsiness is so bad I can barely function...

I will get some stuff done for like an hour or two and then have to lay down only because of the sleepy feeling. I do not even come close to falling asleep as it is more of a need to just close my eyes. ..I am beginning to worry of course because I can't get much done and this is such a awful feeling tiredness.

I have actually been sleeping really well at night so I know it is not from lack of sleep....

Even If I lay down for an hour and get up the feeling is still there and I struggle on for a little bit and then have to lay down again...There is no way I would even be able to drive feeling like this..

Any ideas...I did just have a two day crash last week where my body felt drained of life but not this sleepy tiredness....