Thursday, June 28, 2012

Pregnancy and POTS: Experiences & Resources PART 1

This is a big issue for women and families affected by POTS, and the topic I get the most questions about.  Being that POTS affects mostly women of childbearing age, and there are very few resources out there, and even fewer research articles, this is not surprising.   I have heard from patients that their doctors are telling them not to have kids, which is heartbreaking, and the science just doesn't back that up for MOST women with POTS.  POTS already robs us of so many things- don't let it rob you of kids (if you want them)!  If you  don't have any life threatening genetic diseases that can be passed on, are not on any medications that keep you alive that would damage a baby, and really want kids - there is no reason not to consider it in my opinion.   It is a very personal decision.  Your underlying cause of your POTS is a HUGE consideration, as well as your functionality and support system.  Of course consult with a doctor about anything medical, as I am not one.

The issue of what drugs to take, how to plan, and what to expect can make for a frightening experience if you don't get as educated as possible on the subject.

I tell everyone:  PLAN FOR THE WORST, HOPE/PRAY FOR THE BEST.

Things to consider when planning for the worst:
-Do you have a good medical team of doctors, including a POTS knowledgeable cardiologist, a high risk OB, and possibly a neurologist? 
-Do you have a support network in place in case you are bed bound, non-functional, or severely ill during pregnancy?  Especially if you have other children?
-Do you have a support network in place to help with the baby after you give birth, especially if recovery takes longer than expected or you have complications from birth?
-Are you on any medications that could possibly harm the baby, and are you willing to try and function without them if necessary?
-Do you have any underlying conditions that could further complicate pregnancy, and specialists and support lined up to help deal with those possible complications as well? 




In my opinion, the best way to alleviate fears and make rational decisions is to first educate yourself about your condition and how it effects pregnancy and birth by reading medical information and talking to other women who have had babies with POTS.  Please remember though, that everyone has POTS for a variety of reasons.  So just because someone has a horror story about their experience does not mean you will too.  We are all different.

So here is a quick (well, kind of quick) run down describing my experiences, some literature you can print for your doctors, and some thoughts and links on medications.  This will be a long post, so broken into two parts.  I have had two children after having had POTS for years.  POTS first hit me out of nowhere in late 2002, and has waxed and waned for me since, with really low times, and highly functional periods as well.  My first pregnancy was a magic cure for my POTS, and the second almost killed me and has left me disabled.  Luckily I have two healthy children as a result, and survived. 


BABY NUMBER ONE (A good pregnancy experience, no medications):

My son and I (day trip to a state park)
My pregnancy with my son (now 4), was incredible.  I was already off meds; a Beta Blocker (Toprol) and Florinef, as a result of a miscarriage that occurred 2 months prior at 8 weeks along.  During the first pregnancy, I was taken off meds around 6 weeks.  I miscarried 2 weeks later.  I'm not saying there is a connection - I have no way to ever know, but it was heartbreaking and very traumatic, as those of you who have miscarried know.

After the miscarriage in 2007, I stayed off the meds and actually was doing fine (physically), as I had hated the side effects from those drugs and it was a relief to not deal with them.  Then we unexpectantly got pregnant two months later, and I was scared, relieved, happy, nervous, and many more things - but none of them had to do with POTS.  Since the miscarriage and going off meds, my symptoms had dramatically abated. I was not focused on POTS, had stopped frequenting the online support groups, and had such a hard time finding answers and care locally that I decided to focus on being well and enjoying life and trying to recover from losing the first baby.

My OB doctors immediately had me listed as high risk due to the POTS diagnosis, and my first trimester was miserable, but only because of hyperemisis (lots of vomiting).   Even though I was barfing 4-5 times as day, I never got dehydrated, never had IV fluids, and my tachycardia was unnoticeable.   I worked the entire time (I owned a floral design business/shop), it was the middle of wedding season - and I was making flowers for multiple weddings each week.  Its very physical work, and I was miserable because of the vomiting, but tolerated being on my feet 8-10 hours a day and lugging around buckets of water and boxes of flowers just fine.

Once in the second trimester, we breathed a HUGE sign of relief after having healthy scans of the baby, and I continued to puke and feel sick to my stomach until about 5 months along.  This is where I really started to feel good - the nausea lessened, I only threw up on occasion, and my body felt stronger and better than it had in years.   I was doing exercise dvd's at home, staying super active with work, and was not dizzy or tachycardic at all.

Much of the same continued into the third trimester.  I worked and worked and worked.  On my feet all day, meetiong with clients, making flowers, setting up weddings, all the way up until Valentine's Day of 2008.  I was 9 months pregnant, my main assistant had bailed on me, so I had one helper doing deliveries and made over a hundred arrangements by myself in 2 days, and then called it quits.  I was a few weeks away from being due, and my POTS finally kicked in, and after the Valentine's flower making marathon, I crashed.  My Mom came to help me, as I was pretty sick.  I closed up shop and went home to be miserable until the baby was born (and planned to be closed for 2 months after).  I actually almost passed out with my Mom in tow while renewing my business license, and then went into labor the next day.

Labor was horrible, as I have 11 pieces of titanium in my lower back, and was told I couldn't have an epidural - so we hired a Douala (birth helper lady) who ended up getting the flu the week I gave birth.  So we were on our own with no pain killers, insane contractions front to back from my knees to my neck, and  no sleep for 36 hours.  I was in "official" labor for 28 hours.  After 20 hours, I told them to get the baby out however they had to - and begged for a C-section, but my doc gave me morphine instead to try and "re-set and calm" my uterus to make the contractions more efficient.  I had a horrible reaction to the morphine, no way to mentally cope with the contractions, and highly recommend avoiding morphine at all costs during labor!  But it did the trick, and my contractions became more regular.  My doctor then found an anesthesiologist to try an epidural before throwing in the towel for a C-section, and he did it with no problem.  Relief! They broke my water, I napped, and woke up ready to get the show on the road.  Pushed the baby out in a hour and had my gorgeous healthy boy at 2:15 AM.  I only took ibuprofen after, but ended up staying the full 2 days and getting fluids because I felt a bit  dehydrated and my heart rate was a little high.


Me and my munchkin :)
I nursed my son for 7 months or so, and remained relatively symptom free for that time.  Most doctors agree that the fluid increase both during pregnancy and while breastfeeding makes women with POTS due to hypovolemia (low blood volume) feel better.  What they don't tell you is that if something else it causing your POTS, or if you have an underlying disease that they may not have found (like me), your pregnancy experience may be completely different.   I was lucky with my first, and think my underlying cause had not progressed at that point.  Pregnancy number two was the complete opposite.

Most of the major doctors/researchers in the field agree its a 50/50 chance as to whether you'll feel better or worse.  But all the data points to women with POTS having healthy babies at the same statistical rate as non-POTS women.  All POTSy women, no matter how mild, should consult with your OB and find out what they know about POTS.  Consider a high risk OB, or have one on standby just in case things get complicated, especially during delivery.  

Here are some links to the most recent articles, results, and explanations related to POTS and pregnancy:

Pregnancy and POTS:

1. Postural tachycardia syndrome complicating pregnancy. (Mayo Clinic, J Matern Fetal Neonatal Med. 2010 Aug;23(8):850-3)

"RESULTS:
Patients who did not require treatment for POTS before conception were less likely to have an exacerbation of symptoms or need reintroduction of treatment. Exacerbations of POTS during pregnancy are variable. Of our patients with exacerbations of symptoms, increases in the existing pharmacologic treatments, such as increasing beta-blocker dosage, was effective in palliation of symptoms. There were seven vaginal deliveries. Two patients delivered without neuraxial anesthesia; the other five deliveries were done using epidural anesthesia without associated complications. POTS does not seem to contribute to pregnancy-related complications. Importantly, there were no adverse intrapartum events attributable to POTS.
CONCLUSIONS:
Pregnant women with POTS may undergo safe regional anesthesia and vaginal delivery. This contradicts earlier reports in the literature recommending cesarean delivery."

SUMMARY: POTS pregnancies vary based on POTS symptoms (CAUSES!) prior to conception, C-sections are not recommended unless completely necessary, and epidurals are safe for POTS women. 


*** FREE FULL TEXT, I recommend you print this and bring it to your OB, it is a case study, but discusses how to treat POTS patients during labor and delivery in terms of anesthesia and provides links to resources for your doctor.

3. Effect of pregnancy on postural tachycardia syndrome.  (Mayo Clin Proc. 2010 Jul;85(7):639-44. Epub 2010 Jun 1.)
"RESULTS: Clinical characteristics related to POTS did not differ between parous and nulliparous women except for disease duration (parous, 3.7±2.6; nulliparous, 2.1±2.2; P<.001). Autonomic dysfunction did not differ between groups (change in HR on HUT: parous, 42.6±12.0 beats/min; nulliparous, 41.3±10.6 beats/min; P=.39). Of 116 total pregnancies, adverse pregnancy outcomes were reported in 9% and maternal complications in 1%. No complication was related to POTS. There was a trend toward modest improvement in autonomic dysfunction before and after pregnancy (change in HR on HUT: before pregnancy, 38.1±22.7 beats/min; after pregnancy, 21.9±14.9 beats/min; P=.07).

CONCLUSION: The long-term impact of pregnancy on POTS does not appear to be clinically important. However, there does appear to be a trend toward improvement in the short-term postpartum period. Adverse pregnancy events were similar to those seen in the general public and do not present a barrier to women with POTS who want to have children."

Summary:  Mayo reviewed 116 patients, and POTS patients have the same statistical risks and outcomes as non-POTS patients regarding pregnancy and delivery. After pregnancy, a majority of the POTS patients reviewed felt better.


(Grubb, et al, Pacing Clin Electrophysiol. 2009 Aug;32(8):1000-3.)
"CONCLUSION:
Based on our observation, patients with POTS can safely complete pregnancy if they desire to do so. POTS should not be considered a contraindication to pregnancy per se."

Summary:  Dr. Grubb reviewed 22 patients, and concluded that it is safe for most POTS women to have children.
  

Unfortunately I can only access the abstract of this article, but if you have Type III EDS and POTS, it is worth geting your hands on and getting to your doctor.  

"Abstract
We report the use of regional anaesthesia for elective caesarean section in a primigravida with hypermobility type Ehlers-Danlos syndrome (type III) associated with postural orthostatic tachycardia syndrome. Single-shot spinal anaesthesia was performed after failed epidural anaesthesia. This genotype, although generally associated with fewer antenatal and peripartum complications, is more likely than other types to display dysautonomia and orthostatic intolerance. This requires careful management for delivery."



In PART 2 of this series, I will discuss my second (life threatening) pregnancy and medication options and implications.




4 comments:

  1. Thank you Claire, for this information and for sharing. I have POTS and EDS and have looked far and wide for information about POTS and pregnancy. This gave me hope! I'm very grateful!
    ~Katie

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  2. Claire you are my hero! You are amazing, this information will be going with me to my Dr on Monday morning when I tell him I want to find out the cause of my POTS before I get pregnant. I feel so empowered thank you :)

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  3. Thanks Claire for all your efforts in providing such useful information for women! I am now 27 weeks with hyperadrenergic POTS and it's quite a journey. I too had a terrible reaction to the morphine during my first pregnancy. It was the worst experience ever. My five year old son is very healthy and I have had a fairly good 2nd pregnancy thus far. I will keep you posted!!!!!

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  4. Andrea shannon roseJune 28, 2013 at 2:26 AM

    Can you email me? Asrj02@gmail.com would love to Know how your pregnancy went as I also have hyper pots

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