For pregnancy-induced POTS folks

[calypso]

This is for those of us who got POTS following pregnancy, specifically those who also had high blood pressure at the end of their pregnancies (Ethansmom, MomtoGiuliana & I don't know if this affects anyone else).

I had an appointment with my neurologist today who has been following me since all **** broke loose after I had my daughter and he offered this theory today: that POTS, for us, is an autoimmune thing. This is especially the case if it got really bad postpartum and improved with time. Apparently when you have high blood pressure in a pregnancy, it often is the result of a strange autoimmune response of your body to the placenta, and while you are using all of your energy and circulation to keep the baby alive, your cardiovascular system (and nervous system) are taking a beating. POTS, he says, is the cumulative effects of nine months of your body trying so hard to balance your body's needs with the baby's.

I am describing this in simplistic terms, of course, and it is just a theory. But it kind of makes sense -- for me, at least, because I have always had a poor immune system due to taking antibiotics frequently as a child and due to the fact that I was a formula-fed baby, and my mom smoked while pregnant with me. And if you read about preeclampsia, which is one step past just plain pregnancy-induced hypertension, it is a very autoimmune condition. I am finding dozens of women who had this, then had a weird assortment of health problems. I have been posting on the Preeclampsia Foundation Web site and hearing about other women who I swear have POTS too, from the sounds of their symptoms, after having their kids.

As to what we can do about it, I don't know. I am seeing a rheumatologist on Thursday and will let you know if he has any ideas.

Amy

[ethansmom]

Amy,

This info is all very interesting! While pregnancy did not induce my POTS, it did affect it in various ways- I had tons of PVC's and heart rhythm disturbances while pregnant, and lots of dizzy spells, but in general I felt better than I had before I got pregnant. I did have the high blood pressure towards the end, in fact I had to be induced 2 weeks early because of it. I had a definite period of adjustment postpartum, but have been stable for the past year as my body has adjusted to a non-pregnant state.

I too was mostly formula fed as a baby and was on lots of antibitics as a child- I had pneumonia, recurrent bronchitis, ear infections, and much more. It's strange as I notice the correlation between us moms who were formula fed and have POTS but then chose to breastfeed our babies..I know for me I subconciously worried that might have a lot to do with my immune dysfunction. This is all very interesting... I might do a poll just to see the results on that for others on this board, whether or not they were formula fed too and have had lots of immune related problems during their lives.

Anyhow thanks for sharing and let us know what your rheumatologist has to say. I have believed for months now that my POTS is immune related, and am eager to look into it when I find a new doctor here in Florida.

[MomtoGiuliana]

Interesting. The thing that makes me question the autoimmune connection is only that I thought the body is immunosuppressed during pregnancy. Most women with autoimmune conditions see their conditions improve during pregnancy and then flare up following. But, at the same time, obviously in my case POTS flared in response to the stress of pregnancy. That much was clear. I do also have Hashimoto's which is an autoimmune disease.

As bad as my POTS seemed during some of my pregnancy, I still worked for most of it, full-time (up til the 7th month). Post-partum I went for a couple months of barely being able to stand.

I had excellent bp until the last 5 days of my pregnancy--even though I had tachycardia and episodes of low bp and days of feeling just completely horrible. Then it suddenly shot up to 170/90. My ob/gyn shrugged her shoulders, told me to rest and come back in a few days to re-check it. Well, by that Monday (at which point Giuliana was 2 days late) I really felt terrible. My blood pressure was all over the place--every time it was measured it was different -- from 110/70 to 180/90. So, she decided to induce. I asked for the most gentle induction method, which I now can't remember what it is--but isn't pitocin by IV. It's the gel that is placed on the cervix. She didn't check my bp again for quite awhile. I went into labor 6 hours later and all was going seemingly normal for several hours. Then I had severe placental abruption and was luckily in the hospital or would have died. Anyway, sorry for re-living my nightmare. It's hard to forget, and forgive my doctors for not managing my bp or understanding what was wrong with me. I lost so much blood I had to have a transfusion, which was also very scary.

Anyway, I guess it's obvious why I am terrified of another pregnancy. I do so hope that the medical community can get a handle on this so that others don't have to experience what I did.

BTW, I was never diagnosed with preeclampsia. My ob/gyn never even told me I had pregnancy-induced hypertension. She told me that the reason I had the abruption was that the placenta was partly attached to a very large fibroid and the two detached during labor.

Anyway, this ob/gyn has been fired by me. I haven't even gone to an ob/gyn since then, I have such an aversion to them. I think most of them know very little.

Sorry for all my venting!

I should be so happy that I am essentially well for now and that my daughter is healthy--and I am.

Katherine

[MomtoGiuliana]

Jessica

Interesting about the formula issue too. Even before all this mess with POTS, I felt that the fact that I was formula-fed had contributed to my Hashimoto's. I was determined to breastfeed especially for that reason. Sadly I stopped when Giuliana was 4 months old and I worry about it. I stopped b/c of the meds my POTS specialist prescribed. He felt I could continue to breastfeed safely with them, but the pediatrician said no, so I weaned her, which was so very painful emotionally.

But, I think our problems have to be more complex than only being connected to breastfeeding. For example, my grandmother had exactly the same birth and pregnancy and postpartum experience I did. She was quite sick, lost a lot of blood during delivery, and nearly died. I think there is a genetic connection too. And my sister who has been diagnosed with POTS was breastfed for 8 months.

It's true all of these various assaults on the body (formula vs breastmilk, environmental contaminants, poor food choices) must have cummulative impacts. I think genetics is very very strong though, even so.

Katherine

[ethansmom]

Katherine- interesting little fact...I was given the cervical pill Cytotec to induce labor, thinking it was a safe, gentle method of induction. I was not in labor at all prior to that being administered, and my son was born only 3 hours later- he literally came out with the amniotic sac still surrounding him and they ruptured my membranes while he was on his way out. My contarctions were so strong the whole time that I could not talk or move, and I never had a break between them-it was like one long contraction and BOOM he was here.

I found out a few months after my delivery that the cervical medications they use to dilate women have dangerous side effects which include (but are not limited to) placental abruption AND uterine rupture. I'm not so sure about the cervical gel, but I know Cytotec has been recalled again and again because it runs such a high risk of causing damage. Did they ever dicuss this with you as a possible cause? I just thought this was interesting...had you run across any info like this as well?

In regards to the formula thing...I agree that it cannot be the sole cause of our problems, but I would like to do a poll to see what the correlation is here on our small corner of the world...especially because I have to come up with a study for my La Leche League leadership training and this would be a great topic that is personal to me...so I will get on that.

[MomtoGiuliana]

I can't remember the name of the medication now, but that is very interesting. I had read in numerous books that the cervical gel was more gentle than pitocin and LESS likely to have side-effects which is why I asked for it. I have also often wondered whether the induction itself brought on the abruption. It was a very sudden onset of labor. I was crampy for a couple of hours and then the contractions came on and were so close and long it was very hard to manage. That went on for a couple hours that felt like days during which I steadfastly refused pain relief believing it would all soon enough be over, and then the abruption started. I will do some more research on that though.

Definitely I think the fact that I lost so much blood and had to have a c-section made my POTS completely unmanageable for the months that followed. I truly believe that had I had a natural or at least a normal birth, my POTS would never had gotten so dramatic.

Thanks for doing the poll--it should be interesting!

Katherine

[calypso]

Would you believe I just typed you guys a five-paragraph reply, then accidentally hit a button that deleted it? AAAAHHH!

Anyway, this will be a briefer version because I bravely volunteered to watch my friend's 1-year-old son along with my own 8-month-old tomorrow, so I will need the rest.

I had Cervidil for my induction -- it's a tape-like thing that is inserted into you-know-where and kind of hung out a bit. It was successful and is not the same as Cytotec or gel. But then my midwife insisted I get Pitocin, even though I had progressed well with the Cervidil and my water had broken naturally. The contractions got so bad so suddenly that I ended up screaming for an epidural, which defeated the midwife's whole purpose. Oh well.

Anyway, I definitely was on my way to preeclampsia because my uric acid level was elevated, and my daughter suffered intrauterine growth restriction, which is fairly common among moms who get hypertension during pregnancy. She was so little, just 4-1/2 pounds, and was only 3 weeks early. I was so worried about her having problems, and now look ... I am dealing with the brunt of it! She is as healthy as a little horse. But I would take any grief to ensure her health and safety, and if that means POTS, so be it.

I didn't mean to suggest that for either of you, this theory is the magical answer. I just wanted to share this with those who might be interested. As for the formula vs. BF, I don't blame this for all of my problems ... I just think it's interesting that I have six brothers and sisters who all were breastfed and they are all very healthy. I, however, have always been a sickly one and my mom would actually blame me for getting sick, even though deep down I wanted to scream because she would always be smoking around me and even smoked while pregnant with me. I don't know how she could do that, and I would never subject my child to that. I love my mom, but sometimes I really get ticked about this, especially when I get my annual horrendous viral infection.

OK, enough psychoanalytic babble. Hope this poll turns out to be useful, Jessica!

Amy

[ethansmom]

Amy,

That is interesting about the hypertension and growth restriction...I didn't know that, but they were expecting Ethan to be a normal 7-8 pounder- he was 2 weeks early and barely tipped 6 lbs- he left the hospital at 5.11 lbs which is definitely on the small side. Interesting- although he's a whopping 29 lbs now at 19 months, and 37 inches tall, he certainly made up for it!! And is healthy as a horse too...thank goodness he takes after his dad,the two of them NEVER get sick...like you, I take the brunt of it, lol But the fact that they never get sick means that I stay healthy longer too, because they aren't bringing every germ known to man into the house, so it's great.

I am curious to see what this poll shows as well. Not that I'm expecting a 100% lean one way or the other, but at least it will be interesting to see if our small sample of the population has any correlation.

Oh and Amy, for the record- if that ever happens again and your novel gets deleted, then you can hit "ctrl z" and it will come back- David showed me that after Ethan deleted one of my e-mails for the umpteenth time!!

[MomtoGiuliana]

calypso: Cervidil--that's what I had too--the tape thing that you describe. I was thinking it was some kind of gel, but maybe that's not the right term.

In my case, like I said, my hypertension came on at the very end. Giuliana was actually overdue when I was induced. She was 10 lbs 2 oz, so I don't think the hypertension affected her too much. I didn't have diabetes, but they kept checking her blood sugar levels after she was born since she was so big, but she was fine.

I think birth weight also is affected by genetics as well as environment (of course!). I was a big and long baby too.

I think the theory makes some sense and I appreciate you sharing it. Clearly something happens physiologically to some of us during pregnancy and post partum to cause POTS. There must be a causal relationship. There is so little understood about preeclampsia, too. Someday I hope both will be better understood so that it can be managed and fewer women and babies have to go through what we have. If doctors could even just recognize POTS in pregnant women, it would help reduce risks, I think. Even with as little as we understand it.

My daughter is pretty healthy too. B/c she is in day care part-time she brings home colds and she is also prone to ear infections. She is very active like any toddler and has a vocabulary of close to 200 words. I worry about her, like all moms do, but maybe more so, b/c I can tell already she is going to be tall and thin like me and I don't want her to go through the problems I have with POTS.

Calypso--I understand your feelings of frustration with your mother. My mother didn't smoke, but she didn't educate herself about childbirth or breastfeeding when she had me. This was in the late 60's when natural childbirth was beginning to get popular, etc. Anyway, my mom delivered me vaginally, but she was under general anesthesia--so weird. So I suffered physical trauma from that and had a low apgar. Then she didn't know for some reason about the benefits of breastfeeding and had low confidence in herself about it, so only breastfed me for a couple of months. She educated herself better before having my next three sisters. They were all born with no interventions and all breastfed longer. I am the sickest of all of us--so I always wonder if there is a connection there!

Katherine

[seaboardbc]

Thank you so much for posting this info. Dr. Grubb felt that my POTS was definately linked to my pregancies (I've been pregnant twice and I have 2 children). He thinks that I developed POTS with the first pregancy but that the symptoms weren't severe enough and I was able to ignore them or attribute them to something else. But after my second pregancy my POTS was full blown and so that's when it was diagnosed. I was put on bed rest during the 7th month of my pregnancy (but I probably should have been put on it sooner) because of hypertension and severe water retention (I didn't even look like a person). The bed rest was to prevent preclampsia. I had to lay on my left side and I was allowed up for 30 minutes every 2 hours. I was monitored twice a week by a perinatologist and ended up delivering 3 weeks early. My first pregnancy wasn't as bad, I suffered from severe water retention, but my blood pressure was okay. It's just so weird because ever since my second pregnancy my health has suffered.

Thanks

Bren

[MomtoGiuliana]

seaboardbc, Sorry that you are among our ranks. It is interesting that you did ok with your first pregnancy but not with the 2nd, and also that you had problems with hypertension the 2nd time. I also had the water retention you describe, except for some reason my blood pressure remained good for most of my pregnancy. But, I was super puffy by the 8th month and didn't look like my normal self either. I am definitely not going to have another pregnancy. I unfortunately, suspect the prognosis for the 2nd is likely to be worse.

I am nearly back to normal now, but I still have remnants of POTS symptoms and still have not so great days.

Katherine

[joyagh]

I see this post is 8 years old, but I am a pregnancy induced POTS case. I had gestational hypertension for most of it and pre-eclampsia at the end. I usually had low/normal BP. I was thinking the 50% increase in blood volume during pregnancy could be enough to cause POTS in a predisposed person. Then, post partum the body drops the extra fluid and I feel like my body has never figured out how to balance the fluid and circulation.

My symptoms were 100 times worse during pregnancy, and since I delivered it's been low-moderate chronic.

any more/new ideas about the pregnancy induced POTS/hypertension induced theories?

[lumpchp]

Glad you found this post and got it going again. I was ok during my first, actually bp was too low, and I got dizzy, lightheaded alot. I went in to spontaneous preterm labor at 29 weeks, and was put on meds and strict bed rest the remainder. 6 years later, after 2 miscarriages , I got pregnant, and again had low bp. This time was different though, so much worse. I kept passing out, just felt terrible every second. Worse than that though was postpartum up till now, I really think this last one broke me somehow. I never had the high blood pressure, but man was the labor fast when it came. I was on pitocin for 6 hours-and stayed dilated at 1, then literally within minutes my son was born. Same scenario with both. Not sure it helps with your question... I just know that pregnancy either caused my dysautonomia, or really turned up the volume...

[icesktr189]

I was great with my POTS before pregnancy, bad the third trimester, great post partum and horrid 6 months after until now. Of I was completely breast fed, never had formula and my health is terrible. I had chronic ear infections, UTIs, strep infections, ect. growing up. I was constantly sick.

[joyagh]

This is so helpful to me. I got POTS at 4 mos pg after a flu. I became hypertensive around 6 months and developed Pre E by the last week. I also swelled up suddenly one night and it didn't go away til 2 weeks post partum.

what does one do about an auto-immune caused POTS?

[julieph85]

Joyagh- same with me. I didn't have a single symptom of dysautonomia till my third trimester of my pregnancy. I was put on strict bed rest at 21 weeks for cervical shortening. At 34 weeks I was allowed to stand and that's when my pots started. At 35 weeks I developed gestational hypertension and sudden swelling. At one week post partem my BP shot up to 170/110. Mayo says my pots is autoimmune. I have several other autoimmune diseases, some of which I had before I got pots. They told me the best treatment for autoimmune pots is IVIG. Anything else is just treating the symptoms.

[joyagh]

So have you had IVIG? How often do you have to have it done? How well does it work?

[julieph85]

I have not but my neuro at Hopkins strongly advises that I do it. Honestly I'm so scared of the side effects. I would have to do it every month for the rest of my life

[julieph85]

That's a hard pill to swallow when your only 27

[joyagh]

what are the side effects? I dunno, an IV once a month to feel normal is better than a bunch of meds everyday to still feel like crap, IMO

[julieph85]

Aseptic meningitis, kidney failure, infusion reactions, anaphylaxis, pulmonary embolism...that is not to say those always happen, but, the risk is still there. I agree though. IVIG is going to be my last option. I've tried beta blockers and BP meds and both made me worse. I'm about to do a TNF alpha blocker and SSRI. Of those don't help then its midodrine. If that goes t work then I'm on to IVIG.

[Annaliese]

Julieph85 did you ever get IVIG?