POTS HPA Stuff

sunshine44

Senior Member
Messages
605
Likes
2,150
So, I have been dealing with a bad case of POTS for a few years now.
Have tried many things. Drs are unwilling to help in most ways despite seeing some of the best cardiologists in my area.

My hormones are obviously waaaay off and cortisol etc. after so many years of this.

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.

These are NOT panic attacks, I have those and know what those are.

I am dealing with mast cell and can't try a bunch of supplements and meds so please understand that if you try suggesting something.

Question is....am I going to survive this? Who has had so many bad episodes and was able to survive? after over a year of this...I am really scared because there has been no easy solution to get these under control despite trying many things.

I am working on balancing my body and hormones but as many of you know easier said than done....I just cannot believe these episodes I have, there are straight up out of nightmares and I am doing my best to remain calm about it all and wondering if anyone else ever went through really tough times with POTS and made it through.

PS. I Have been bedridden since early last year.

pps. Please no fear posts. I really need to get my mind OUT of fear from these.
 

Lisa108

Senior Member
Messages
438
Likes
1,372
I don't know if this is a POTS related issue, because you are lying in your bed when these bouts happen...

Would you be able to go to a sleep clinic? So that they could monitor what is going on?
If not, do you have any devices that could measure heart rate, O2, and blood pressure while sleeping?

I think it would be good to know if
  • your blood pressure went extremely low in the first place and the attack was a way of your body to compensate this
  • or you are having a bout of hypertension "out of nowhere".

For the first scenario sleep apnea was the first thing I thought of. Maybe having a friend watching (and listening to) you sleep (or a camera with sound recording) would help to figure this out.

Best wishes! :hug:
 

sunshine44

Senior Member
Messages
605
Likes
2,150
thanks I have been in hospital for them....my o2 doesn't dip too low, it seems to be some type of hormones in my opinion bringing this on (or lack of), yes did sleep apnea machine, etc. not that. Its some kinda of dysautonomia, LLMD says POTS cardiologist doesn't know. I am always sent home after a few days.

I do think my blood pressure, and heart rate are going low making something pump out to help bc beta blockers and benzos only make it worse (it does help during bad attacks) but makes low episodes even lower.

Its maddening. Its exhausting.

I kept asking nurses in hospitals what it looks like and they just said I would be asleep and all of a sudden high heart rates would come on, panic and sweating and weakness, etc. which leads me to believe this is low hormones.

Not addisons they said.
 

Lisa108

Senior Member
Messages
438
Likes
1,372
Sorry if it sounded like I would questioning you having POTS, I just thought that your night time problems might not be related to that.

I'm far from being a POTS expert... (or expert in any of this stuff, just trying to wrap my head around this).

I still think it would be helpful to measure what is going on (concerning heart rate, blood pressure, O2), to see what happens before/at the time of these bouts.

Your GP might want to consider more testing, if you could provide data from a couple of nights, showing something really wrong there.

What is your normal blood pressure like?

Could it be a side-effect of any medication/OTC product you are taking (maybe an antidiuretic?)?

I hope you'll get a lot more (and more helpful) comments here!
 

sunshine44

Senior Member
Messages
605
Likes
2,150
Could this be menopause or peri-menopausal? Some of this type of thing does occur as the hormone shifts.

I found progresterone cream to be helpful for some of this for a while: I used it for about 12 years.
I am absoluuuuutely having hormone issues since getting severely ill a few years back, yes progesterone yam oil was helping me about 3 years ago the I couldn't do it anymore and now my dr said no hormones as m system is much too volatile.

Very interesting though. I know hormones plays a huuuuuge part in this for me because it gets worse at ovulation and period, like I am short on some hormones or something.
 

sunshine44

Senior Member
Messages
605
Likes
2,150
Sorry if it sounded like I would questioning you having POTS, I just thought that your night time problems might not be related to that.

I'm far from being a POTS expert... (or expert in any of this stuff, just trying to wrap my head around this).

I still think it would be helpful to measure what is going on (concerning heart rate, blood pressure, O2), to see what happens before/at the time of these bouts.

Your GP might want to consider more testing, if you could provide data from a couple of nights, showing something really wrong there.

What is your normal blood pressure like?

Could it be a side-effect of any medication/OTC product you are taking (maybe an antidiuretic?)?

I hope you'll get a lot more (and more helpful) comments here!

thanks you. no sorries :)

Its definitely dysautonomia related and seems to be connected to lack of dhea and some other hormones and yes my bp goes very low at times.... unfortunately there are so many things going on that drs are like you can't take every single hormone and beta blocker, etc. ...like there is a mastermind behind it all.

My bp has always been low but much lower since the severe illness began 2 years ago.

no, I only take a tiny bit of Ativan a day and this was happening before then and beta blocker as needed yet can't take too much bc heart rate can get low too...sigh.

thank you for your help.
 
Messages
81
Likes
170
Location
Barcelona
You don't need to have Addison's to have a dysfunction of the HPA axis. Have you had the synacthen test done? The one with stimulation with ACTH? I'm not dx with Addisons but I'm definitely at the edge of secondary adrenal insufficiency (the problem is in the brain, not in the adrenals themselves, which makes sense).

It's funny that once I started treating my adrenals and taking natural inmune modulators my POTS became waaaaay milder, although I still have OI and presyncopes. I took the synacthen test, have been prescribed pregnenolone for that, and I also take adrenal cortex. Cordyceps has been great for my mitochondria and adrenals too. Also vit. C. They've worked very well for me together with a keto/paleo diet.

You said once you were also suffering from reactive hypoglycemia, which is also connected to the adrenals. Do you have someone (a naturopath) that could help you treat the HPA axis? You could make important gains from that. Do you think your night episodes could be related to both low blood sugar and hormone dysregulation? Have you checked your blood glucose in those moments?
 

sunshine44

Senior Member
Messages
605
Likes
2,150
thanks...I just did 10 years of naturopaths and treating adrenal fatigue.

It worked some for awhile...until it did not.....and I became allergic (mast cell stuff) to all those supplements for adrenal, cordyceps, vitamin c, etc.

It is absolutely my hpa axis and hormones but solving my puzzle has not been easy. Many things that help others in this shape has backfired dramatically on me.
 

outdamnspot

Senior Member
Messages
893
Likes
678
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.
 

i-lava-u

Forum Support Assistant
Messages
686
Likes
2,144
Location
Utah, USA
Thinking of you today @sunshine44

I too have POTS, it was very severe at one time. I do understand how frustrating it is to live with.

Now, my once very low blood pressure has switched to high blood pressure...well, it is normal when lying flat, then drops low when first sitting or standing, then jumps up and stays very high until I lay flat again. Weird.

It has been really tricky finding the right medication and it took MUCH time and MUCH trial and error. I take Mestonin and Metoprolol now but those are only somewhat effective, but definitely better than without.

I also have Mast Cell issues and am leary of trying new medications etc and have had severe allergic reactions to meds. that have worsened my ME and POTS, so, I very much can relate to you about being scared to try new meds.

It's hard, because on one hand there's the desperate feeling of wanting/willing to try anything to feel better but on the other hand sometimes trying a new med can make you much worse. But, sometimes it can make us feel a bit better. It's like Russian Roulette.

Have you tried raising the head of your bed? Mine is raised 4 inches. For me, it took a good 2-3 months to get used to and the first month, I did feel a bit worse, but I stuck with it and it has helped the dizziness/nausea ease up.

I wish I had more to offer. I think a lot is trial and error as each of us may respond differently to different things.

I do sincerely hope you find some kind of relief for this soon. It is not a pleasant way to live. I just wanted to say, that I am so very sorry you are dealing with this awfulness. Sending lots of :hug::heart: your way.
 
Last edited:

sunshine44

Senior Member
Messages
605
Likes
2,150
thank you so much. Your words mean so much. Last night I made sure to add yet another pillow and no laying on sides and it wasn't the level its been, yet still there.

Thank you again <3
 
Messages
1,738
Likes
4,836
It's hard, because on one hand there's the desperate feeling of wanting/willing to try anything to feel better but on the other hand
Its hard to know what to do. I just reviewed the side effects possible from a new thing was recommended I try.

Around here, you change one variable and go into the Ditch for two weeks. I cannot afford another episode of: that. And then my insurance won't pay for it either. Ugh
 
Messages
81
Likes
170
Location
Barcelona
thanks...I just did 10 years of naturopaths and treating adrenal fatigue.

It worked some for awhile...until it did not.....and I became allergic (mast cell stuff) to all those supplements for adrenal, cordyceps, vitamin c, etc.

It is absolutely my hpa axis and hormones but solving my puzzle has not been easy. Many things that help others in this shape has backfired dramatically on me.
I'm sorry to hear that :( I wish I could suggest something better. Really.
 

Learner1

Administrator
Messages
3,792
Likes
6,781
Location
Pacific Northwest
I have not been online much at all this week as I was at the ME/CFS Lobby Days and the NIH Conference. We heard a number of experts discuss POTS treatments, which are:

IV saline or raising water and salt intake, while watching for electrolyte imbalances
Fludrocortisone
Compression socks
Midodrine
Pyridostigmine
Beta blockers (I tried 5 before finding one that worked

One point that was made was that many of us need meds compounded due to the supposedly inert allergens in the FDA approved versions.