Dysautonomia and hormones?!!

[JennKay]

Hi all -- this is directed at all the ladies dealing with POTS and dysautonomia spectrum issues, but what is up with all the hormones? Particularly, estrogen, progesterone, and our monthly cycles? Why do changes in these hormones cause an increase in symptoms? What are the theories and current hypotheses on this aspect of POTS/dysautonomia? My symptoms usually increase right before my monthly cycle - more ectopic beats and orthostatic issues. I don't get tachycardia when I stand, but I get lightheadedness and chest tightness when I stand for prolonged periods, even with fluid loading and compression tights. This also gets worse with PMS. I'm sure the female hormone aspect of POTS/dysautonomia has been discussed many times in the archives, but I'm wondering what you all have heard from your specialists over the years and what is the current thinking in the field. My cardiologist said it is normal for symptoms to spike with hormone changes, but didnt elaborate on why it happens. Thanks!! 

[Pistol]

@JennKay - I am 55 and became unable to function from POTS when I was 42. Back then I too was worse when my hormones were soaring, even mid-cycle. My autonomic specialist told me at that time that most likely after menopause the symptoms would either improve or get worse. In my case menopause was uneventful and my symptoms remained, but did not worsen ( thank god! ). 

I found this article that might answer some of your questions. It specifically deals with pubertal females but it addresses how the ANS responds to hormonal changes. 

Pubertal Hormonal Changes and the Autonomic Nervous System: Potential Role in Pediatric Orthostatic Intolerance - PMC (nih.gov)

[JennKay]

@Pistol -- Thanks for sharing the review. I will definitely give it a good read later today. I am 36, so I probably have another 10-15 years minimum before menopause. My symptoms also spike mid-cycle with ovulation and for about a year prior to my first big flare my cycles were getting shorter and I never figured out why that was happening. I mentioned it to my OBGYN but she didn't think my initial flare was related to hormone issues. Interestingly, I just started taking a folic acid supplement over the last few weeks and my cycle was way longer this month, like almost 10 days longer than my previous cycle which was short, even for me. Makes me wonder if some of my issues have been/are related to vitamin deficiencies. Since mid-March I have also been adding B vitamins to my daily routine and I think this has helped my energy levels as well. 

[Dia]

On 4/18/2022 at 4:42 PM, JennKay said:

@Pistol -- Thanks for sharing the review. I will definitely give it a good read later today. I am 36, so I probably have another 10-15 years minimum before menopause. My symptoms also spike mid-cycle with ovulation and for about a year prior to my first big flare my cycles were getting shorter and I never figured out why that was happening. I mentioned it to my OBGYN but she didn't think my initial flare was related to hormone issues. Interestingly, I just started taking a folic acid supplement over the last few weeks and my cycle was way longer this month, like almost 10 days longer than my previous cycle which was short, even for me. Makes me wonder if some of my issues have been/are related to vitamin deficiencies. Since mid-March I have also been adding B vitamins to my daily routine and I think this has helped my energy levels as well. 

@JennKay thanks a lot for sharing ur feedback!! Same here, started getting  shortened menstrual cycles abt 3 yrs before my first big flare, and various OBGYN said it must progesterone insufficiency and offered oral progesterone during the luteal phase (which l didn't want to take). 

But folic acid seems a great alternative. What daily dose did you take? Did you have blood tests in the past to check your serum levels of folate? Mine was 10 ng/ml while the lab states that the normal should be >3.9 ng/ml. So l thought there is no need for supplementing. 

But l am thinking of trying supplementing folic acid anyways. Couldn't find recommended serum levels for pots/dysautonomia patients and toxicity limits. Anyone has clues abt that?

Thanks a lot!

[JennKay]

@Dia - Sure! Am glad to hear that someone else is in the same boat with me. I haven't had my serum folate tested, but I was taking 400mcg per day. I don't remember if I bought the supplement from Amazon or Walgreens anymore. On a side note, since posting this I have been working with my gyno to check my hormone levels. He checked them at 3 points during my cycle (day 4, day 11, and day 22 - or something close to these dates) to catch the levels during each phase. Turns out, I have the hormones of someone closer to 50 than their mid-30s. My estrogen ratio (as he described it based on the fractionated estrogen levels) is close to the menopausal transition level and my progesterone is non-existent. He has no explanation for this since I carried two pregnancies to term w/o issues, nor have I had any miscarriages. He mentioned something at our last appointment about the low levels of progesterone being potentially adrenal gland related, but didn't elaborate further.

Lately, my BP has been running particularly low and my PVCs have gone crazy -- even more crazy than normal for me and I have had horrible PVCs in the past. My gyno is going to have me try progesterone in the second half of my cycle, which I am completely open to, but based on my PVCs at the moment I think I may wait another cycle. I am currently trialing Coreg (3.25mg) instead of propranolol (10mg) to see if this helps with the PVCs. The Coreg isn't helping yet, but I have only had one dose and I suspect I am in some weird transition phase b/w the betas b/c the PVCs are worse today than yesterday when I was on the propranolol. My EP is also going to have me try florinef since my BP Monday night was 85/55. I have no idea what is happening at the moment!! I haven't been able to figure out my triggers other than hormonal changes and oddly enough, when I am relaxed my symptoms get worse. Anyway, I am hoping the combination of florinef and Coreg will help balance things out.

[JennKay]

@DysautonmiaMatt -- Thanks for the hormone level pic! Yes, my estradiol was 101 pg/mL but my progesterone was 0.5ng/mL on day 22 of my cycle. So, absolutely no progesterone, which matches what I have been experiencing for the last few months - a lack of ovulation. Prior to all of this I could tell when I ovulated b/c it was painful, but I haven't experienced that in a while. 

For the florinef -- I don't want to change too much at one time since then I won't know what is doing what, so what I've decided to do is to stay on the propranolol for now but try the florinef tomorrow morning. I only had one dose of Coreg today and didnt notice any difference. My BP was already running low on the propranolol before trying the Coreg. I also added the tri-Mag, not the one you ordered, but a similar version. It did nothing, sadly.

Honestly, the only thing that I know is different is that I am less stressed at the moment (my boss is out of town and we are finally settled into our new place after moving at the end of July). I think the decrease in stress has lowered my BP, causing the PVCs to tick up b/c of poor blood return to my heart. I suspect this is happening b/c the PVCs get better when I recline for a bit. When I was trying to work at my desk today, I was getting PVCs sooo frequently! If this is what is going on, then hopefully the florinef will help raise my BP enough to reduce the PVCs. We will see! I am going to start with a low dose (0.1mg), drink lots of electrolytes (like usual), and check my Na and K early next week to see how they are doing.

[JennKay]

@DysautonmiaMatt -- I agree, I am deflated 😆

 

[Pistol]

13 hours ago, JennKay said:

The Coreg isn't helping yet, but I have only had one dose and I suspect I am in some weird transition phase b/w the betas b/c the PVCs are worse today than yesterday when I was on the propranolol.

Jenn, this was the case for me when I started Coreg also. The fact that you are stopping the propanolol and starting such a low dose of Carvelidol means you are essentially untreated at the moment. Once you determine of you tolerate the carvelidol your doc will titrate the dose up to a therapeutic level, meaning your PVC's and high HR should improve at the dosage right for you. For me that was 25 mg, so it may take quite some time to get there! 

[MikeO]

@JennKayJust as a comparison i am taking 6.25 mg of Carvedilol twice daily. It did take a little bit to notice the transition from Metoprolol  

[Ana]

For me personally, the effects during or around my period vary with each individual cycle. Some cycles I feel so very tired and my symptoms worsen noticeably, and then others I am perfectly fine. It also varies whether or not symptoms get exacerbated in the PMS stage or during the actual period week. It is very strange to never quite know how it will go. Kinda sucks to be honest, but I guess it is what it is?

[Pattie]

 I find this discussion interesting. I was first diagnosed with POTS at age 70. (Neither I nor my doctor is aware of anyone being diagnosed at my age.) I became aware of symptoms right after I quit using Estradiol patches for osteoporosis. I have often wondered if there might be a connection between developing POTS and eliminating Estradiol.