I Watched Mystery Diagnoses And Now I Am Scared

[sarct]

I believe this was the name of the episode, and in this episode a woman was diagnosed with dysautonomia (can't remember her exact diagnoses). In the episode she mentioned that she miscarried her baby at 6 months, and her doctor told her that she probably didn't have enough blood volume.

I was wondering if this is something that happens to those with dysautonomia? I am 13 weeks pg, and scared my condition can harm my baby. In the beginning I was still having pots symptoms, but the last several weeks I have been feeling better than ever.

I was just curious of the risks involved with pots and pregnancy. Should I be concerned? I am not on any medications for my symptoms right now, so I have no risk there.

[Ernie]

Hi,

Each person is different and each pregnancy is different. The doctor told her that it might have been cause by lack of blood but this is just an assumption. There can be so many other causes.

[Megan]

You should talk to your dr treating you for disautonomia if you are concerned. However, I recall past posts saying that some women felt better than ever while pregnant, symptoms improved, etc. When I asked Bev in Toledo recently, she said that POTS (at least for me) was not a reason to not have kids. (I'm not trying or anything, just wanted to know for future reference.) I think I once read that some women feel better during pregnancy because of increased blood volume. So, if you are worried, talk to your dr, and if you have concerns, definitely ask your ob., but try not to worry too much. Not everyone has the same symptoms/experiences the same things. (This is a lot more than I thought I'd type, as I've never been pregnant!) Good luck to you!

Meg

[ramakentesh]

Is say as Ernie said - its most likely an assumption that the doctor made and I doubt there was any significant evidence to support it.

Im a guy so my input is probably limited, but id suggest that the biggest risk associated with pregnancy and POTS is either an exacerbation of the symptoms post birth or during the pregnancy or the onset of symptoms in an otherwise asymptomatic female with a predisposition to contract POTS (many autoimmune illnesses can be triggered post birth).

[lloppyllama]

I dont know if I have much comfort for you as I have never been pregnant with pots, or pregnant at all for that matter, but I have seen before on here that most people pregnancies go wonderfully and they actually feel the best they have in a long time. I think its a good sign that you said you are feeling better than ever! And also if I remember correctly from when I watched that episode, she does have POTS she actually started the NDRF site...but the doctor only thought that her miscarriage might have been caused by the low blood volume...that doesn't mean it actually was. Miscarriages can happen for many reasons, this was just a guess. Also dysaut. patients dont actually have low blood volume, our volume is that same as any other person, it is just due to the fact that our blood vessels dont constrict properly that we need a higher blood volume...but our actual volume is not low compared to a normal person, we just need to have it higher because of our ANS dysregulation.

Try not to worry!

-Mary

[MelissaCrystal]

Sometimes pregnancy can actually cure pots! It's so unpredictable. I'd definitely get a special doctor though to make sure your health and your baby's health is fine during development. Always better to be overly safe.

[sarct]

Thank you for your quick replies. I am so frustrated, because my OB (and he is a great ob) has nothing to say on the matter as he is unfamiliar with the condition, and my neurologist who diagnosed me told me to go online to find info out on pots (offering little input). I did have an appointment set up at u of m with a guy who knows about this condition, but when I went in I saw some grunts instead who had no clue, and was told the guy I had the appointment with had to have surgery and will be out for 6 months. So I am having a hard time trying to figure out where to turn right now to get answers for my condition. I am so frustrated. I do feel great. I worry about post partum, though. Will things com back with a vengeance? That is what happened after my weight loss. My condition has always been tolerable, but when I lost weight I went from just being a person who gets light headed or faints from time to time to a chronic life altering mess.

I began my symptoms at age 8, so none of this is new per se. The intensity is much different now.

I have been monitoring my heart rate and having some fun with that, actually. My husband and i will perform the same task with the same exertion of effort and he gets to see just how much harder my heart works performing the same task. It has really helped him to understand, and lets just say I am no longer responsible for dishes anymore. My heart rate would go as high as 178 scrubbing dishes. I am still getting tachy when I am standing, but it is not affecting my ability to function and it isn't as high. My baseline bp is also elevated which I think is contributing to my lack of symptoms as well. Now if only I could find a way to stay pg all my life!!! lol

[flop]

I've a friend with POTS who had a baby 2 years ago. If I remember correctly after the morning sickness went away she had the best improvement in POTS and mid-trimester was great for her. During the last trimester her BP was low and she was getting dizzy again (on no medications) just a few weeks before the delivery she started very low dose fludrocortisone. She had a Caesarean and a healthy baby. The first year after the birth her POTS was much better than usual, she now has symptoms more like her pre-pregnancy state but if anything is better than before pregnancy.

There are one or two medical articles on POTS in pregnancy / obstetric care I think they are listed on the main DINET website - have a look and give the details to your PCP, neuro and OB.

Enjoy feeling good and don't worry about what you can't predict!

Flop

[EarthMother]

Doctors sometimes say the first thing that pops into their head. That was total conjecture on part of her physician to say the miscariage was due to her POTS. If there was a correlation between POTS and miscarriage I'm CERTAIN we would have seen it HERE ON THE DINETS BOARDS FIRST!

I had MISERABLE POTS with my first pregnancy ... probably because I was much UNDER WEIGHT when I became pregnant. The morning sickness went on for almost five months. I couldn't stand. I had to go out of work for short term disability. It was a scary time for me. But my daughter was healthy -- no problems whatsoever in terms of her development. I think our bodies are designed to take care of the baby first. I know that if we are nursing mothers, our bodies will produce antibodies to any virus in the house to our breastmilk before it even provides antibodies in our own blood system. It's all part of the design!

My next two pregnancies were uneventful. I worked up until the day each of my next two children were born without a problem. I still had POTS crashes during those years, but none related to my births. Which leads me to believe that the bad crash I had with my first born may have had NOTHING to do with my pregnancy.

[firewatcher]

I had two very healthy pregnancies with undiagnosed POTS. I gained 60 pounds with each pregnancy and lost 30 of it within the first week after giving birth (I guess I retained fluid well when I was pregnant ) Both babies were enormous and healthy. I had an awful, induced labor with the first: I was given pitocin and no pain meds and by the time they checked to see if I was dilated, the baby had crowned. During that one, my BP went so high they could not measure it. I had an epidural with the second birth and my BP went so low that they put me in pressure pants. I actually felt pretty good when I was pregnant, it was after that was hard. Get someone to stay with you!!!!! For as long as they can!!!!!!! As long as your OB/GYN knows that you are dealing with POTS and believes you, don't worry. Discuss birthing options well in advance and have plans A,B and C for the delivery. Talk to the anesthesiologist before the birth and make them aware and educated about POTS (look under the FAQ part of this site.) Congratulations on your little bundle of joy! May you both be blessed with health!

[pat57]

Not all POTS have low blood volume,like they apparently blamed it on.

that's my 0.2 cents

[Miriam Poorman-Knox]

I can say that for me my pregnancys were hard. One of the "hallmarks" of pots in pregnancy is papular dermatitis of pregnancy. A rash mostly on stomach that itches like all get out. I did have some very early miscarriages. Once I got further on and had a great doctoe, and took the right meds. I have 2 wonderful children 30 &27. We have come alon way since the 70's. As long as your doctor is aware relax and enjoy. Once medicated I loved being pregnant.

So, congratulations and enjoy. Miriam