New Pots Diagnosis

[TamaraLJ]

I am 33 years old and was diagnosed with POTS a couple of weeks ago. My symptoms are not as severe as those who have syncope and other debilitating symptoms. My heart goes out to all of you who do. The major one for me is exercise intolerance. I was attempting to do a boot camp exercise program for four months (it was excruciating) and finally went to see a cardiologist about the fact that my heart rate would get close to the max with very little effort.

Now that I’ve read more about POTS, I realize that I’ve probably had it since I was 12. That is when the exercise intolerance started. A whole slew of symptoms that I’d always ignored came together and made sense. I also have a high degree of heat intolerance, fatigue (I’ve always required more sleep than the average person), anxiety, and various others.

I have a couple of questions for the seasoned veterans out there. First, unless symptoms are severe, POTS can appear psychosomatic. My husband is having a hard time believing that it is real. He thinks that my insistence on air conditioners and my exercise intolerance are both heightened because I now have a name for the problem. Does anyone else have experience in how to get someone to understand that this has nothing to do with being lazy or getting our way about the temperature?

My other question is related to pregnancy. I have read that POTS can originate either because of pregnancy or can get worse with pregnancy. I’ve seen a couple of you mention that pregnancy really caused your POTS symptoms to worsen. Can I ask how much they changed? I ask because I consider my case to be fairly mild and I’m wondering if I could develop a severe case of POTS from having a baby.

Thanks in advance,

Rain

[misstraci]

Hi Rain!

As someone once said to me, sorry you have to be here but glad that you are! welcome. i hope you are able to find some solutions for your particular situation. As far as getting someone to understand, I'm not sure, I need that info as well because everyone with the exception of a few think I am a hypochondriac. I believe that material from the internet/books etc, to just show the person, "look it's real, it's in black and white here and I was confirmed to have it unfortunately". I don't know. As far as the pregnancy and the POTS getting worse during or after, I have to say from personal experience that if I didn't have it prior to pregnancy (because I may or may not have) it became what I would consider severe afterwards. I've been going through a cruddy time since last February when my son was born and that is just speaking for myself. I hope that it does not worsen for all cases and I'm sure that it doesn't but it just so happens that mine did. Also though, I had complications during and shortly after childbirth which put my body in stress and maybe THAT was what triggered my POTS and not the pregnancy itself.

Hope you get the information you are looking for and feel better

[Magnesiumgirl]

I don't have any answers for you, my family and friends are mostly supportive (even though it doesn't always make sense to them...) and I don't have kids. I just wanted to welcome you and wish you luck.

[MomtoGiuliana]

Welcome to the forum. glad your symptoms are "mild". Sounds similar to how I am now. I could never do boot camp, however my life is reasonably normal otherwise.

I became very incapacitated by pregnancy as it progressed. I was diagnosed 3 months post partum--and from about 6 mos preg until then told I was mentally ill--yes you are right there is overlap in some symptoms with mental illness and it is hard I guess for doctors to decipher what is going on when they are not familiar with the condition and blood tests all come back normal!

I think the fact that you have a diagnosis would make a pregnancy easier than if you went into it undiagnosed (as I did). I had mild symptoms occasionally prior to pregnancy, but no diagnosis. It is possible to take certain meds with pregnancy if needed and even just understanding what is wrong and the non-medical interventions available are bound to help. Unfortunately I believe it is hard to predict how you will do with pregnancy. Some women w POTS feel better during pregnancy, others the same, others worse or much worse. Some do fine with pregnancy and then crash post partum. Not to concern you but to let you know there are a variety of outcomes. Again, knowing what you have should help greatly with management. There is nothing in the medical literature that advises against pregnancy with POTS or indicates worse pregnancy outcomes for women with POTS and that is great news. there have been some small studies (or at least one) that found no significantly adverse pregnancy outcomes due to POTS.

You should definitely talk to your dr before getting pregnant and probably a high risk Ob/gyn in case meds are needed as the pregnancy progresses.

take care!

[TamaraLJ]

Thank you all for your quick replies! It's nice to have a place to go to talk about this. I forgot to mention one biggie for me - reactive hypoglycemia. That one is no fun!

It's really scary to think of having a "mild" form of POTS to severe due to pregnancy/childbirth. I will definitely need to consult with a few doctors.

And just for the record MomtoGuiliana, I am no longer able to do boot camp. I always thought that being out of shape was something I just had to push myself out of. Like as long as I put in the effort I could be an athlete/runner if I wanted. I discovered very quickly that it wasn't the case, but still didn't know why. There was definitely sadness in discovering the "why", but I'm determined to do as much as I can to be the best I can be regardless.

[HopeSprings]

Welcome. Your post struck a chord with me. My husband and I regularly engage in temperature wars. We are in the middle of an air conditioner battle as we speak. I have explained repeatedly that due to my condition, I have a problem with temperature regulation, but I still get "it's not hot in here." OK, 78 in the house might be ok FOR YOU - but it's killing me. In the winter, I have the opposite problem and we're doing battle over the thermostat - I turn it up, he turns it down - UP DOWN UP DOWN. I'm hoping one day it'll just sink in and he'll let me do what I need to feel comfortable without having to justify it every time. You can try explaining about the temperature regulation problem and if that doesn't work, maybe time and persistence will wear him down. I think my husband is starting to crack. I don't really think he gets it about the fatigue either. He says he understands, but seems to expect me to do everything as a normal person would, never says "why don't you rest or lay down." If I say I'm not feeling well, having a bad day whatever - he'll say "why, what's wrong?" Should I post a sign on my forehead to remind you of "what's wrong?" I give up. As far as pregnancy, I was MUCH worse while pregnant, both times, but after having the babies things returned to regular old pre-pregnancy POTS status. Definitely consult with a few Dr's, but if you really want children, I wouldn't rule it out.

[Sallysblooms]

Oh 78 degrees is really hot for sure. I do fine at 75 thankfully. Our new house always seems cool at 75. I used to have it lower in the house before this one.

[Brye]

"temperature wars" cracked me up yet also sums it up at our house hold. I developed severe POTS after pregnancy but it was pregnancy #4 in just under 6 years. Too much for my body to take obviously. Looking back though I had POTS like symptoms during all my pregnant times that were just associated with being pregnant. I was a pregnant fainter, had a ton of ankle swelling, lots of fatigue and shortness of breath. I have 4 healthy babies now though and no regrets. My POTS was diagnosed as severe POTS but I've worked my tail off to try to get back in shape a bit and I'm back to a very tolerable level. I can stand, walk, drive, and even take my kids to the park if the temp is right. I wouldn't change a thing!!

Brye

[TamaraLJ]

Naomi, it sounds like we're married to the same man!! I got that line the other day: "it's not that hot in here" when it was 78 in the house. Thank you everyone for chiming in about both questions. I definitely don't feel so alone or crazy knowing that others are dealing with the same issues. I appreciate that you are sharing your stories.

[sue1234]

I was thinking the other day, why in the world does 75F feel very comfortable, and at 79F I'm lightheaded, vasodilaty, and miserable?? It's so hard to understand why 4 degrees makes such a huge difference!

[songcanary]

TELL me about it. I was miserable for the last few days, but when the heat wave/humidity lifted, so did my symptoms. Crazy stuff. I checked my BP the whole time and it was its usual low self, but no worse. Maybe like they say, 'it's not the heat, it's the humidity!?'

[zatchbell322]

Just wanted to add that I am feeling very similar to how you are. We have temp wars at home as well. I also believe I have had POTS for a lot longer than when I was recently diagnosed. I joined the military after highschool and was quickly discharged for having asthma and "anxiety", I use the term loosely because the problem I was having (lightheadedness, high heart rate upon)seem more and more like POTS the more I learn about it. Originally when I started trying to discover what was wrong with me my husband was convinced I just had severe anxiety.