POTS HPA Stuff

[MTpockets]

Sounds like a histamine rush to me. Do you tolerate any antihistamines?

 

[brenda]

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]

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]

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]

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.

 

[sb4]

@Aerose91 I had very similar symptoms when I was worse. I also found inositol helped but mainly with getting to sleep.

 

[bread.]

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

 

[Jyoti]

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]

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

 

[Oliver3]

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.

 

[Oliver3]

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

 

[Don Quixote]

I experience something similar (I think?). My sleep cycle is very dysfunctional, so I'm sleeping from 6am to 3pm; however, often I will wake up involuntarily around 12pm convinced I am going to die from the slightest stress or exertion .. my heartrate will feel extremely dull and 'weak', I can't stand, mental anxiety is crippling etc. When I was a little less sick, noradrenaline would kick in to compensate but these days when it happens it almost feels like my body's not running on anything. If I'm lucky, I can fall back asleep but if not I just lie there and try to meditate. And pretty much every time, by about 3pm my body will normalize. So I'm pretty sure it's a cortisol dip that's waking me up and then things end up okay at my normal wake time.

That said, my adrenal issues did get so bad around Christmas that I have started self-medicating with Hydrocortisone, which has probably saved my life.

Is hydrocortisone OTC in the USA?

 

[Learner1]

Is hydrocortisone OTC in the USA?

No, it's not..it requires a doctor's prescription.

The things that are OTC, which can improve the situation, but are not as fast acting or a direct substitute, are DHEA and adrenal cortex supplements.

 

[Don Quixote]

No, it's not..it requires a doctor's prescription.

The things that are OTC, which can improve the situation, but are not as fast acting or a direct substitute, are DHEA and adrenal cortex supplements.

Ok thanks. I have some adrenal glandular and some topical DHEA, and also some prednisone.

I have symptoms of adrenal insufficiency but i have high cortisol, so clearly for me it is glucocorticoid receptor insensitivity or down-regulation mimicking signs of adrenal fatigue.

I took finasteride which reduces cortisol clearance, so possibly leaving receptors insensitive. I may have to actually take cortisol antagonists to try to reset the HPA...

 

[Violeta]

I haven't tried this yet, but I am wondering if an herbal product like this would help. I have all the ingredients in powder form, I will start taking them regularly and see if it helps.

Gaia Herbs Professional Solutions HPA Axis: Daytime Maintenance - 120 Vegetarian Liquid-Filled Capsules

 

[Woof!]

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.

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.

Fast forward to 2021 and I just found your post, @Jyoti! What you describe is exactly what happens to me, and yes, I always thought it was a 'neck-position-inducing-fight-or-flight' issue (in my case going back to when I had a horse roll over my head when I was 17). What helps me is several things:
- Using a D-Core orthopedic pillow (similar to your towel-under-the-neck trick, but more flexible);
- Being conscious of not curving my neck too much when I sleep;
- Lying straight on my back when I wake for 10 minutes or so, to stretch out my body under the covers and realign my neck; and
- (this is really important, honest!) Offering a smile to the world before I attempt to get up. What offering a sincere, unforced, genuine smile to the world does is
(1) it relaxes your muscles;
(2) it increases your natural endorphin levels;
(3) it stimulates your diaphragm to trigger a deep breath;
(4) It drops your blood pressure.
...Plus, it just helps you to start your day (or turn over and get more sleep) on a positive note.

Before I discovered the power of smiling before I tried to rise, I often pitched forward with extreme dizziness when I tried to get out of bed. I know it sounds so unbelievably simple, but I haven't had trouble getting (slowly) out of bed since adopting the above way of doing it, and I've been doing it now for years.