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Today has been horrible.  

I had what I call a flare hyperanadrinic shakes so bad my teeth clattered cold hands feet for ages high blood pressure high heartrate . So cold ice cold dressing gown jumper heated blanket weighted blanket and other still so cold .Then when finally ended hours later go to burning feet face yet still cold with extreme weakness thinking adreline of upping mmy ketotifen for my mast cells was horridous .

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  • 2 months later...

I get that teeth-chattering to-the-bone freezing episodes also. It’s more frequent and worse when my other symptoms are also present. It happens all seasons of the year. Anytime I leave the house I have to bring sweatshirt, socks, ski hat and blanket. I’ve had episodes outdoors during 90 degree weather (i’m the crazy one wearing the sweatshirt shivering if you’ve seen me). I feel like the docs are throwing guesses at me for why it keeps happening.  Then my body seems to overcompensate for the chills and finally heats up then I’m blazing (without the excess clothing).  Just absolutely awful.  I’ve upped my water/salt to be sure i’m not dehydrated. In addition, I take an Allegra daily which seems to work for reducing the range of my freezing/hot but only if my other symptoms are not raging.  During these flares my heart rate is definitely also not behaving properly. 

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@Bergbrow - I have HPOTS and get these tremor/chills attacks when my adrenaline goes up. I will be shaking uncontrollably, yawning excessiveley ( an attempt by the ANS to provide more o2 to the brain ), hands and feet and lips blue. If I dont lie down I go down, and even take seizures from absent brain circulation. The one thing that has stopped these for the most part are calcium channel blocker ( to provide adequate vasodilation ), avoiding triggers and IV fluids. I get them 3 times a week vie port at home and have not had too many episodes since. Actually NO seizures or syncope this year!

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Eating a light snack and/or taking a short 10-20 minute nap all covered up helps me end feeling like I am freezing even when it is warm.  I don't get teeth chattering but have involuntary jaw snapping which has broken and cracked molars.  

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On 9/15/2021 at 9:38 AM, Pistol said:

@Bergbrow - I have HPOTS and get these tremor/chills attacks when my adrenaline goes up. I will be shaking uncontrollably, yawning excessiveley ( an attempt by the ANS to provide more o2 to the brain ), hands and feet and lips blue. If I dont lie down I go down, and even take seizures from absent brain circulation. The one thing that has stopped these for the most part are calcium channel blocker ( to provide adequate vasodilation ), avoiding triggers and IV fluids. I get them 3 times a week vie port at home and have not had too many episodes since. Actually NO seizures or syncope this year!

That amazing pistol !!! So glad u feel lil better 💖unfortunately calcium channel blockers made me more poorly .

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On 9/14/2021 at 11:38 PM, Bergbrow said:

I get that teeth-chattering to-the-bone freezing episodes also. It’s more frequent and worse when my other symptoms are also present. It happens all seasons of the year. Anytime I leave the house I have to bring sweatshirt, socks, ski hat and blanket. I’ve had episodes outdoors during 90 degree weather (i’m the crazy one wearing the sweatshirt shivering if you’ve seen me). I feel like the docs are throwing guesses at me for why it keeps happening.  Then my body seems to overcompensate for the chills and finally heats up then I’m blazing (without the excess clothing).  Just absolutely awful.  I’ve upped my water/salt to be sure i’m not dehydrated. In addition, I take an Allegra daily which seems to work for reducing the range of my freezing/hot but only if my other symptoms are not raging.  During these flares my heart rate is definitely also not behaving properly. 

This soooo me it horrible I really feel stupid in woolly jumper everyone else is in shorts!! 

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merkat30 wrote: "I really feel stupid in woolly jumper everyone else is in shorts!!"

Yeah, I say a lot of dirty words and laugh wearing my warm and comfortable flannel shirts in the Texas heat. But, whatever, I'm still walking and talking. In a panic, I do try to throw that shirt off for package deliveries or unexpected company - it does look stupid and embarrassing, even my light-gray and off-white 'summer' flannels.  Couple those shirts with my loose pants (I'm very touch sensitive) and I'm a fashion disaster. I just slap a smile on and keep going. 

You don't have an infection in the wisdom tooth area, do you? I have a major abscess in a failed root canal and crown now from a jaw smacking event many years ago and I feel much worse and more prone to being cold. It all gets fixed end of month - getting an implant; they told me I could carry it to my grave (very reassuring, don't ya know). 

Sometimes I feel deprived not having tasty, summer ice cream floats, milk shakes, and ice cream, but there's no joy there if I'm freezing. Such is life. 

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Mike, if you had a conversation about this with a practitioner of medicine, you've managed something I never could get rolling. I can see their numerous faces now as they pause a second, look at me like I've committed a major paux pas for bring this concern up, and then move right along to end our session. 

I am miraculously warm for a spell after showering in hot-hot water forever, jumping in my wonderfully overheated Camaro and leaving the AC off to run errands and pick up dinner which I was actually able to eat after hitting the hydrocortisone a little to get heat-trashed blood pressure up into a range conducive to life. Folks don't realize how crippling feeling cold-to-the-core can be and what a head-spin it is. It is definitely not conducive to anything but wanting more drugs or herbs or both.  Now to turn up the tunes and get some work done - life can be lived in spurts of correct functioning, fashion be ******.  You all have a good one! 

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@RexieI am so jealous your Camaro has AC :) mine doesn't. I do get really chilled as well but saying that i can go to be really stinking hot (long johns are standard issue) nothing like walking into the local speed shop all bundled while the counter girl is half naked (explaining why i was wrapped was a bit awkward)

What i have been able to do is catch my temp swings while i am feeling cold vs hot. My normal temp hangs around 97.1 when i am cold it drops to 96.5 and when i am hot it is a normal 98.6. Might be helpful to check our temps?

So yes my faint and fall practitioner does take symptoms seriously guess i am lucky that way. We looked at the usual culprits (infection, thyroid etc...) came up empty. So what does that leave left? an offending drug side effect, broken (ANS) can't really fix that, poor circulation (Peripheral artery disease) can't fix that either. 

So we focus on what makes me feel better (and yes it sucks that i would even have to deal with this) on a really bad day a hot shower works, 15 mins on the treadmill also works.

I hope you can make some headway with your practitioner. 

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Thanks, Mike. Glad to meet another Camaro lover! Been a long time since I frequented speed shops and the like (fond memories remain), but I still love a smooth, sleek, powerful ride. Just remember while you're out there - a genuine great smile or grin always charms the ladies. 

I got up early and speed-read my way through eighty or so journal articles. Good news, we can perhaps each do a few things to beat that cold feeling as it turns out, according to our own cases and what we each take, eat, drink, and do. 

The experience of persisting coldness is related to low vasopressin levels. 

Vasopressin, also known as antidiuretic hormone (ADH) or arginine vasopressin, AVP, is a peptide hormone formed in the hypothalamus, then transported via axons to the posterior pituitary, which releases it into the systemic circulation in response to extracellular hyperosmolality. Vasopressin has two principle sites of action - the kidneys and blood vessels. It has several physiological effects, including conservation of water by concentrating urine (through its effect on the kidneys) and promoting vasoconstriction in high concentrations. Besides regulating the balance of fluid and salt in the body, vasopressin helps coordinate thermoregulation, helps regulate vagal nerve tone, and promotes energy balance and healthy metabolism by exerting direct actions on glucose and lipid metabolism. It impacts our circadian rhythm and may also have a role in facilitating learning and memory. 

Release of vasopressin is generally controlled by osmoreceptors (cells sensitive to plasma osmolality) in the hypothalamus. Osmoreceptors respond to changes of extracellular fluid osmolality. A decrease in plasma volume also causes release of vasopressin. 
Vasopressin is also released directly into the central nervous system by somato-dendritic release (some neurons secrete neurotransmitters from their cell bodies and dendrites in contrast to classical neurosecretion at synapses). 
Vasopressin is anatomically and functionally linked with catecholaminergic systems and the mesolimbic dopamine system. 

Several neurotransmitters have effects on vasopressin levels. Acetylcholine and angiotensin II stimulate release of vasopressin. Norepinephrine, gamma-aminobutyric acid (GABA), and atrial natriuretic peptide (a cardiac hormone) are inhibitory. Alcohol prevents vasopressin release and may cause low levels, as will certain drugs such as lithium and phenytoin. Too little vasopressin in blood may also be caused by compulsive water drinking. Certain foods and environmental endocrine disrupting chemicals may alter the pathways and behaviors coordinated by vasopressin, e.g. the soy phytoestrogen genistein; the plastics component bisphenol A (BPA), and various flame retardants.  

Vasopressin production is reduced by aging. Low night-time levels of vasopressin are believed by some to contribute to nocturnal polyuria in the elderly. 

So what did a hot shower and hot car do for me yesterday? They increased my hypothalamic temperature, stimulating vasopressin release and reduced my general sensation of feeling cold that in itself can prevent vasopressin release. Until I can get my dental abscess cleared up in two weeks which has my system a bit unbalanced, I can reduce my GABA enhancers and put up with more pain and muscle stiffness, and also reduce my norepinephrine enhancers (coffee, nicotine, and others) that help keep blood pressure up, while relying more on hydrocortisone (for adrenal insufficiency) to help regulate my blood pressure and other functions (recommended anyway during times of illness). I use to get a few of these cold spells once in a while beginning some 40 years ago (and even as a child), long before autonomic dysfunction. Continuing a high salt intake will help keep not only blood pressure up, but also help increase vasopressin levels. Exercise is good, too, and will be easier for me as our summer heat comes down. Tomorrow I start not smoking, tapering nicotine with patches. 

One study from 1999 demonstrated that the experience of persisting coldness can respond dramatically to brief treatment with intranasal vasopressin (1-d-amino-8-D-arginine-vasopressin; DDAVP; desmopressin acetate) twice daily for 1 month.  Relief can be seen as soon as one week after beginning treatment and response can persist even long after discontinuation of treatment, the theory being that the hypothalamic thermostatic mechanism has been reset. 

Intranasal administration of vasopressin may act in two ways to reset the hypothalamic thermostatic mechanism. Vasopressin may decrease local brain temperature, enabling the hypothalamus to adjust to an appropriate set point. In addition, a brief exposure to vasopressin may reset the hypothalamic feedback mechanisms where vasopressin release has been inhibited by the sensation of coldness.

The use of administered vasopressin does have some cautions regarding water intoxication and hyponatremia, and should not be used in those with moderate to severe renal impairment, and with great caution in those taking pressor drugs (antihypotensive agents and certain cardiac drugs). It would be considered an off-label use today for treating persistent coldness. 

Arginine vasopressin: Direct and indirect action on metabolism, Mitsuhiro Yoshimura, Becky Conway-Campbell, Yoichi Ueta, Peptides, Vol. 142; 2021 
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8270887/ 

Somato-Dendritic Secretion of Neuropeptides, Colin H. Brown, Mike Ludwig, Javier E. Stern, pp 59-80 in Neurosecretion: Secretory Mechanisms, Lemos J., Dayanithi G. (eds), Masterclass in Neuroendocrinology, Vol 8, Springer, 2020
https://link.springer.com/chapter/10.1007/978-3-030-22989-4_4 

Vasopressin Treats the Persistent Feeling of Coldness After Brain Injury, Jonathan M. Silver, M.D., and Karen Anderson, M.D, J. Neuropsychiatry, Vol. 11, Issue 2, pp. 248-252; 1999
https://neuro.psychiatryonline.org/doi/full/10.1176/jnp.11.2.248 

Dietary sodium intake increases vasopressin secretion in man, S E Kjeldsen et al, J. Clin. Hypertens., Vol. 1(2), pp. 123-131; 1985
https://pubmed.ncbi.nlm.nih.gov/3915319/ 

Endocrine Disruption of Vasopressin Systems and Related Behaviors, Heather B. Patisaul, Front. Endocrinol., Vol. 8; 2017 
https://www.frontiersin.org/articles/10.3389/fendo.2017.00134/full 
 

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