This Article Makes Total Sense And Why We Are Different

[Ashelton80]

http://www.holistichelp.net/dysautonomia-autonomic-nervous-system-dysfunction.html

I think this article sums up the complex and multifactoral issues when it comes to the autonomic nervous system. When I hear people say "I was running marathons, working 3 jobs etc" so I wasn't deconditioned this is exactly what I think of. Burnout. Especially the section that talks about Cortisol steal from aldosterone, dhea, testosterone, etc. I have had low values on all of these hormones before. Of course nothing was addressed.

[brethor9]

funny I was reading an article today on Florinef that said it is almost identical in structure to cortisol? really gets me thinking even more about how this is possibly an endocrine based illness....your article makes me wonder even more? (I was tested in the past and had abnormal cortisol levels but it was never addressed either)

[hippychic258]

Great article! So I am thinking it makes sense to me I was under so so much stress when this happened I think my system just shut down big time, and I have Pots as a side effect of this.

[HopeSprings]

funny I was reading an article today on Florinef that said it is almost identical in structure to cortisol? really gets me thinking even more about how this is possibly an endocrine based illness....your article makes me wonder even more? (I was tested in the past and had abnormal cortisol levels but it was never addressed either)

Yes, I've wondered too if Florinef works not because it boosts blood volume, but because it acts like a steroid.

[brethor9]

good point Naomi! I have totally noticed symptoms that florinef has an effect on and I was never sure why until one of my nurse friend's said its a steroid.....steroids affect all kinds of things...moods, hormones, weight,,,,etc.....I mentioned this to my specialist when I first started it that my chest had grown like 2 sizes and that I was having massive mood swings....he didnt think it was the florinef because it was a small dose but I beg to differ....I think it may also be why I have a hard time tapering off of it ......

[songcanary]

This is a good read. I have spent the last two years trying to address my sympathetic overdrive. When I look back on my life, it is a miracle I didn't crash long ago.

It reminds me of my initial appt with my wonderful rheumy. He diagnosed me in five minutes and then spent the next two hours explaining why. It took me three years to find him, but I am so very grateful for that man.

Thanks for posting.

[AllAboutPeace]

Thanks for posting this, Ashelton!

It does make alot of sense for me when I read through it. I think the fact that we need 'good rest' gets missed at times. I can see now how much I pushed my body before I got sick and it literally got to a point where it could be pushed no more. It's actually pretty scary to think that people could be in a situation like that and be told that they need to do aerobic exercise as a first line of treatment- it's counter-intuitive.

Bren, I'm looking at starting Florinef and I just took note of your comment about the '2 sizes increase' - yikes !! I've already had that increase over the last several months...lol

[NMPotsie]

This article is really interesting. Thanks for posting!

I was on another thread posting about how my hormones have become much lower since getting POTS (estradiol and progesterone, specifically) and then I come read this and am like "oh yeah, I have that!" I also have really low cholesterol. It was 114 the last time I had it checked. My doctor attributed it to the malabsorption, saying "you don't absorb the good so why would you absorb the bad?" but I'm wondering if it has something more to do with dysauto (it's always been low, like 130-140, but has plummeted since POTS). He told me to eat more butter. I tell people I have dietary restrictions and that they include butter, salt, and chocolate. They're like "how do I get on that diet?" LOL

Anyway this gave me a lot of insight and things to think about.

[Millerla]

I agree, I like the article. I, like many, was a busy busy person before my symptoms really came full force. However, I had the extreme exhaustion quite a lot before I got stressed. In fact, I was in the most low-stress, boring part of my life. I was even on a vacation in Florida the first time I really noticed the exhaustion. It's possible that that was from something else, but that was the defining point for me(It was shortly after a bad bout of the stomach Flu), so maybe stress just exacerbated my symptoms? The only other possible beginning point was after I had mono a little over a year and a half ago and WAS during plenty of stress(I was really busy and my parents were going through a not-so-pretty divorce). When I first noticed the extreme exhaustion(I was never awake for more than an hour at a time), it was after the flu, on a Florida vacation, during a year that I was doing nothing but about half an hour of online school(I left my previous school because of bullying issues) and dance 1 1/2 hours once a week. So if it was the instance after the mono that triggered my POTS, I still want to know why I was so tired all the time for over a year before that.

I actually have a slightly high cholesterol, but apparently that's because I lost a bunch of weight then gained it back pretty quickly. I'm also not on any medications for my POTS, technically. I am on a low dose of an anxiety medication and some omeprazole for my stomach. I was told that exercise would be my best friend (easy for the doctors to say..). Oh, and apparently my cortisol levels are good. I had that tested at mayo and the two different autonomic specialists I saw said that they were just fine. I do have very high estrogen levels. The gyno was concerned it would be low, but found the opposite to be true.

In the article though, it does say that naps should not be frowned upon. My doctors seem to think that the naps aren't letting me rest as deeply as I should be, and I have therefore been forbidden to take naps. It has not gone well so far, because I usually fall asleep everytime I lay down. I think I sleep plenty deeply though, thank you. I have my alarm set on full volume, so that my mom on a different level and opposite side of the house wakes up from it, but I still sleep through the alarm blaring right next to my head. :/

[NMPotsie]

Millerla I don't buy the stuff about not taking naps. "Regular people", with "regular sleep cycles" shouldn't take naps because it disturbs the quality of their sleep. We are not regular people! I have tried to adhere to the going to bed, getting up on a regular schedule, and not napping protocol and I am exhausted and more likely to have hyper flares. There are days when things aren't going well for me, with crazy low/high bp, postprandial dizziness/fatigue, etc. and the ONLY thing that helps me is to just go to sleep. I think of it as a reset button, like you have on electronics. I can nap for 2 hours, go to bed that night and sleep like a corpse.

We know what works for us and what helps us feel better. I say nap if you need to. It's bad enough to have this disorder, nonetheless to fight what your body is demanding to heal yourself.