January 11, 2013

Guest Post: POTS & Pregnancy: A Case Study (from the patient)

No, I'm not pregnant.  There would be a much more exciting way for me to share that news with you.  But during October (yes, I know, this post is really late), it seemed like POTS and pregnancy were an important topic to cover...and since I haven't experienced this yet, I wanted to reach out to someone who has.  I realize that every pregnancy is different, but hope that this information might shed some light and tips for women with POTS.

This post was written by Hillary E. Schafer and she blogs over at

***Guest Post*** 


Patient: Female, 24 years old, 3rd pregnancy (2 prior missed miscarriages resulting in D&C procedures) 
Pregnancy Dates: 06/27/2011-03/27/2012 
Patient Dx: Hyperadrenergic POTS*, Dysautonomia, Iron-Deficiency Anemia, Hypokalemia 
Prescription Medication taken prior to Pregnancy: Fludrocortisone, Lexapro, Clonazepam 
Prescription Medications taken while Pregnant: NONE 
Yrs with POTS** Dx: 2.5 
Yrs with Symptoms: 5 
Specialist Physicians Who Treated Patient During Pregnancy: High-Risk OB/GYN, Cardiologist, Neurologist 
**POTS secondary to *possible* Chiari 1 Malformation, Hereditary Autonomic Dysfunction, and/or Autoimmune Disease 

The Good

Overall, I felt okay during my pregnancy. I actually noticed an increase in my quality of life. I was able to work part-time during the course of pregnancy up until 3 days before I delivered. I was able to socialize a little and do some traveling during my pregnancy. 
I had no problems traveling by airplane while pregnant. 
While pregnant, my "flare-ups" never lasted longer than 48 hours. 
I didn't need to take any prescription medication while pregnant. 
I delivered a perfectly healthy baby girl full-term (39 weeks) weighing 7lbs, 3oz. and measuring 19 in. long. 
I delivered vaginally with no complications and no tearing. 
I had a 16-hour labor and then pushed for one hour. 
My delivery was medically "uneventful".  
No immediate complications following the delivery - I was released from the hospital after 48 hours with normal bloodwork and vital signs.  
I only gained about 25lbs during my pregnancy and lost it rather quickly following delivery.  

The Bad
The 1st trimester I experienced a significant increase in fatigue. This was helped with drinking coffee in moderation. 

The 2nd trimester (between 19-22 weeks) I experienced a few episodes of severe tachycardia that were uncontrollable. My doctors contemplated starting me on a low dose beta blocker if the tachycardia didn't resolve in a specific amount of time. However, after a few weeks the tachycardia diminished on it's own so no pharmaceutical intervention was required. (This time period is when there are a lot of blood-volume shifts in the pregnancy so an increase in HR is not uncommon during 20-24 weeks.)  

The 3rd trimester I experienced episodes of very low B.P. (i.e. 80s/40s) and a few "black out" episodes. Towards the end of my pregnancy these were monitored closely and I spent a few extra nights in the hospital prior to my delivery for my vitals to be observed.  

Overall, I experienced more heart palpitations throughout my pregnancy.  
I was perpetually dehydrated during my pregnancy. (Almost every urine test showed +1 Ketones signifying dehydration). No matter how much water I drank or how many times I got I.V. fluids in the E.R., the dehydration was very difficult to correct.  
I had complications with my epidural during labor & delivery -- it became unilateral and then stopped working completely no matter what position they put me in or how much medicine they gave me.
About 10 days post-partum I experienced a SEVERE relapse in my POTS/Dysautonomia. This was probably the sickest I have ever been since I first became ill. I was hospitalized for two weeks and routine tests/treatments were unhelpful. My TTT (Tilt Table Test) was still clearly positive for POTS. The only other abnormality was a 3mm herniation of my cerebellar tonsils into my foramen magnum - aka: Chiari 1 Malformation. This was the first time this was noted on my brain MRI. I have since followed up about my Chiari with a Chiari Specialist at the University of Chicago and continue to pursue this Dx as a possible cause to my POTS. (Childbirth can worsen Chiari symptoms due to the "bearing down" during vaginal delivery.) 

It took about two months for me to return to a "functional" (this is a relative term) quality of life. My POTS treatment now post-partum, is much different (and more effective) than my treatment prior to pregnancy. (Current Prescription Medications: Metoprolol Tartrate, Mestinon, Clonazepam, Low-Dose Naltrexone.)  

I now have a much better quality of life than I ever have since being sick but it has taken me months of trial-and-error, research, tests, and the help of a wonderful Neurologist to get to this point. I am still quite far from "normal" and may have a long journey ahead of me but I am determined to continue to learn more about my specific case and try new things to aid in my recovery.  

Tips for "Potsies" Who Are Pregnant (Or Are Considering Pregnancy):
Have a close and constant relationship with a High-Risk OB/GYN preferably one with experience in treating POTS patients. Help them help you by providing them with information and case studies.  
If you are very sick, consider a scheduled C-section at 37 weeks (if baby is healthy) to avoid possible exhaustion & relapse following a vaginal delivery.  
Stay well-hydrated and receive I.V. fluids frequently.  
Rest as much as you are able during and after your pregnancy. DO NOT over-exert yourself. Stay very conservative with your physical activity, if any at all (As this may have contributed to my relapse following delivery.)  
If delivering vaginally -- DO NOT PUSH until you have completely "labored down", meaning let your uterus do the work for you. It may take longer for you to actually deliver but it's much better than becoming exhausted or endangering yourself (and your baby) by pushing too much or too soon.
Treat Post-Partum Depression (PPD) as early as you feel any symptoms. It is not uncommon and treatment is especially critical to chronically ill patients.  
If you plan on getting an epidural for either vaginal delivery or c-section, consult with Anesthesiology about your condition prior to the birth. If they are unfamiliar with POTS patients advise them of the following:  Careful titration of phenylephrine (as opposed to ephedrine) would be preferable for the treatment of hypotension. The avoidance of epinephrine-containing local anaesthetics or agents that trigger tachycardia would also be advisable in POTS patients. 
Push fluids (normal saline with 5% dextrose) before, during, and after birth. 
An arterial line may be appropriate for better monitoring of BP fluctuations as hypotension is common with anesthesia.  
Consider giving C-section patients blood during or after procedure since POTS/Dysautonomia patients may already be hypovolemic.  
If pregnancy was extremely difficult, consider permanent birth-control options at time of, or following delivery to prevent further pregnancies.  

Counsel well with your Doctor about breastfeeding to see if it is a right fit for you. There are both pros and cons to breastfeeding in POTS patients. You should decide on and prepare for a plan prior to delivery. I breastfed/pumped for the first three weeks post-partum but felt that it may me more exhausted and caused more heart palpitations (probably due to the blouses of blood going from my uterus to my heart as breast feeding stimulates uterine contractions).  

POST-PARTUM care is CRITICAL for POTS patients!!! You should be able to stay in the hospital as long as you feel comfortable or as long as you need. Closely follow up with your specialists and do routine bloodwork on-time. REST as much as possible and get help from family members and friends to care for your baby. Eat very healthy foods and hydrate well. Start medications (including oral contraceptives) as early as you need them (if you are not breastfeeding). Continue prenatal vitamins. You are clinically post-partum for the first year after you deliver so make sure to inform all of your doctors of your pregnancy and delivery, even if it has been several months since the birth.

Keep record of your own case of POTS and Pregnancy and share it with us so that we can gain and share more knowledge on this important topic.

Remember, childbirth is one of the hardest and most severe traumas a woman's body will experience. Do not be discouraged if it takes you a while to feel your "normal" again. Do not be discouraged if you suffer a relapse during or after your pregnancy. There are so many changes going on in your body, the unpredictable is expected. This is why you need to prepare as best as possible. Get as much rest as you need and do NOT feel guilty about it. You MUST take care of yourself if you want to be able to care for your child. 

Also, some patients may want to consider Cardiac Rehabilitation (with an OK from your doctor) prior to getting pregnant.  

Take your time in deciding whether or not to conceive. Having a child (and subsequently raising that child) is NO easy task. Pregnancy can be accomplished successfully in patients with POTS. Close monitoring of a specialist physician is highly recommended and C-Sections may be more appropriate for sicker patients or those patients with Chiari Malformations or other co-morbid conditions that affect autonomic control.

Case Study Links (Please Read and Share with Your OB/GYN):

Disclaimer: Hillary is sharing her personal experience.  All advice given here is her own. You should always do your own research and consult with your doctor before decisions about your medical care.

1 comment:

  1. Faintly It took about two months for me to return to a "functional" (this is a relative term) quality of life.You should always do your own research and consult with your doctor before decisions about your medical care.


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