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POTS HPA Stuff

brenda

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I awak almost daily for past year really but daily for month in these awful episodes in middle of night with pounding heart, weakness, blurry vision, cold sweats, horrible temperature feelings and can hardly sit up to get in wheelchair for restroom, also causes horrible mental anxiety etc.
It sounds to me like your liver is unable to store enough glycogen for the night and therefore your adrenals kick in so that some sugar can be released.

The answer is to take some salted orange juice to bed to sip whenever this happens and before you go to sleep. I take a glass of water with it to rinse my mouth after the juice. This comes from Ray Peat.
 

sunshine44

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I think its a combo of the above certainly.

No, histamines don't take super well.

I can't do oranges but do do honey.

So many layers to all of this.
 

kangaSue

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POTS usually means something amiss with the Renin Angiotensin System. Abnormalities in Angiotensin II regulation may play a key role in the pathophysiology of POTS in some patients, maybe that's to do with the Ang II antibodies detected by CellTrend in Germany.
https://www.ncbi.nlm.nih.gov/pubmed/29618472
https://www.ncbi.nlm.nih.gov/pubmed/21266211

I'd check the renin levels though as there are a couple of vascular issues that can affect renin production (Fibromuscular Dysplasia and renal Nutcracker Syndrome). Excess renin can be cleared by the kidneys without showing as a problem in a blood test though.
 

Aerose91

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It I'd like to offer something to this conversation since I've had this issue very severely for 7 years now. Minimum 3 times/week, sometimes more. I get shot awake like i was hit by a bolt of lightning and spend the rest of the night pouring sweat, shaking, heart pounding, terrible anxiety and confusion. If i fall back asleep it usually leads to intense nightmares.

Here's what I've found out.

Yes there's a dysautonomia/adrenal/mast cell issue going on. I keep a glass of water with electrolytes and inositol next to my bed and drink a bunch before going to bed. The electrolytes help the salt issue and inositol calms the mast cells. If i do wake up, my first plan of attack is to drink a bunch of that water. If that isn't enough i eat some protein (i keep a couple jars of baby food next my bed). I add salt to them and take more inositol as my mast cell issues are bad. This usually helps a fair amount. Last resort, if it doesn't, is that i will eat again and take 5mg hydrocortisone. I keep a few tabs next to my bed as well. This also helps for a bit but i try to keep the hormones as a last resort.

Proper circadian rhythms help balance the HPA axis, too. Get sun in your eyes first thing in the morning and sun in your eyes for the last hour or two before the sunset. Ground while you do it. It helps

I hope you're having some success with this issue, i know it all too well. It sucks so bad.
 

bread.

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does your heartrate also rise with little movements like raising your arm, sitting up and swallowing?
 

Jyoti

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I have experienced the same things as @Aerose91 and @sunshine44 for years now. I (try to) get to sleep about 9 or 10 and invariably awaken at 2 or 2:30 with my heart racing, drenched in sweat, having to pee, and feeling like my whole system has been poisoned. My cortisol, through saliva testing, trends quite high, particularly in the times when it should not, though I have yet to measure it at 2 am. That's next.

However, I encountered a really interesting hypothesis as to why this happens from Dr. Curtin, the new clinician at the Center For Complex Diseases, and thought I would share it on the off chance that it helps someone else. It is another cervical spine issue!

Here is how I understand what she told me: my cervical spine is somewhat flattened (lacking proper lordosis) and I like to sleep curled up on my side. Because of the lack of curvature in my spine and the way I tuck my head in sleep, my airway is narrowed somewhat. She told me that in REM the last muscles to fully relax are those of the jaw and neck, and when that happens (presumably around 2 am for me) my airway is compromised. Not to the extent of sleep apnea which I tested negative for. But as she pointed out, a single percentage more of oxygen saturation is only that. A bit better than the cutoff for diagnosing apnea is not necessarily good. So possibly, as I go into REM I also achieve low enough oxygen levels to set off a sympathetic nervous system emergency response--release of cortisol, racing heart, sweating and also kidneys dumping.

It made sense in my case, and I have since been sleeping mostly on my back with a towel rolled under my neck so that I simulate a proper curvature and keep the airways open. I also started taking Cortisol Manager at night. I still awaken, but miraculously without the panic or the physical symptoms. I am physically calm when I wake up and thus almost every night--back to sleep without too much trouble.
 

Aerose91

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I'd also like to add that Dr Mozayeni told me that mast cells degranulate around 3 am. Hence why antihistamines and inositol may help
 
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i can empathise totally. You may be in the grip of a very bad episode. I just want you to know you can improve and find a better, more comfortable level. Two years ago i thought i would die from this, but i'm still here ( and not trying to tempt fate). Some great advice from everyone. Keep hydrated and the electrolytes flowing. I think you can also start trying to drop into the sympathetic overdrive mentally and visualise happiness or a calmness. I know that sounds trite but im trying to rewire my autonomic nervous system as Norman Doidge has had some really great results with stroke patients, alzheimers patients even autistic patients etc etc from using the neuroplasticity.

I'd just like to also point another thing that helps normalise this for me. I heard from 2 navy seals who were driven to the point of exhaustion by their training or combat. They had very similar reactions. Not being able to stand, crazy elevations in blood pressure, then crazy drops , temp control issues , altered cognition etc. In short the level of exhaustion and physichal and emotional stress did that to them I find comfort and some logic in the idea if it can happen to some of the fittest people on the planet, then this level of chronic sympathetic activation can surely do that to us mere mortals.
One least thing i experiment with is breath holding. I heard a story about a free diver who RA went into remission from developing huge breath hold times and juicing. Again, i know this seems trite, but anything that reduces hypoxic episodes (which i think partly gets our sympathetic drive going) has got to be good . Breath holding helps the vagal tone and control of the sympathetic reaction, if used with conscious awareness . It also creates a better exchange of blood gases and improves body oxygen levels. Just a word of warning , don't do it without an instructor. Buteyko method is the best way of doing this in my opinion and you can find instructors online. Just don't do it alone as it's not smthg to over do.
I know thats a lot of different info but this is the way i'm trying to manage it...I've been able to lower my propanolol to just 20 mg a day, down from 120mg. I found that 120mg just made the pots worse and dehydrated me. Hope you find some improvement soon.
 
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I have experienced the same things as @Aerose91 and @sunshine44 for years now. I (try to) get to sleep about 9 or 10 and invariably awaken at 2 or 2:30 with my heart racing, drenched in sweat, having to pee, and feeling like my whole system has been poisoned. My cortisol, through saliva testing, trends quite high, particularly in the times when it should not, though I have yet to measure it at 2 am. That's next.

However, I encountered a really interesting hypothesis as to why this happens from Dr. Curtin, the new clinician at the Center For Complex Diseases, and thought I would share it on the off chance that it helps someone else. It is another cervical spine issue!

Here is how I understand what she told me: my cervical spine is somewhat flattened (lacking proper lordosis) and I like to sleep curled up on my side. Because of the lack of curvature in my spine and the way I tuck my head in sleep, my airway is narrowed somewhat. She told me that in REM the last muscles to fully relax are those of the jaw and neck, and when that happens (presumably around 2 am for me) my airway is compromised. Not to the extent of sleep apnea which I tested negative for. But as she pointed out, a single percentage more of oxygen saturation is only that. A bit better than the cutoff for diagnosing apnea is not necessarily good. So possibly, as I go into REM I also achieve low enough oxygen levels to set off a sympathetic nervous system emergency response--release of cortisol, racing heart, sweating and also kidneys dumping.

It made sense in my case, and I have since been sleeping mostly on my back with a towel rolled under my neck so that I simulate a proper curvature and keep the airways open. I also started taking Cortisol Manager at night. I still awaken, but miraculously without the panic or the physical symptoms. I am physically calm when I wake up and thus almost every night--back to sleep without too much trouble.
Just something to try. I was trained in somethign called buteyko and they told us that around that time in the morning, the body tries to blow off all c02. Many heart attacks happen around this time as you breath centre drives the breathing ( hence the heavy breathing etc) The recommended we set off the alarm half an hour before this blow off point and do the c02 retention holds which then improve the oxygen levels (you need c02 to bind oxygen to the red blood cell)
If thats too much, try taping your mouth at night. You feel really oxygenated the next morning. Just worth a try
 
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