Pregnancy And Pots...need Help And Advice Please

[EABarnard]

Hi ladies. So I have had POTS going on 3 years. It has been going very well and under control but now that I have gone into my 3rd trimester of pregnancy, I am feeling terrible. My gynae doesn't really know or understand my condition. I just wanted to know if a worsening of POTS symptoms is to be expected? If so...any advice? Also please give info on how you felt after having your baby? Am really starting to feel nervous and afraid that I won't have the energy to look after my new baby. Thanks so much!!

[MomtoGiuliana]

Every one of us seems to be different in how our bodies handle pregnancy and there probably is not a way to predict how things will progress or how you will feel post partum.

I was undiagnosed until 3 months post partum, but I felt very badly starting in my 3rd trimester and had to stop working full time at 32 weeks. I mostly rested at home for the last 8 weeks of pregnancy. I felt even worse post partum. Fortunately my mother moved in with us for several months and was able to be a huge help. I was able to breastfeed but was unable to have anywhere near a normal level of activity for several months. In my case, again, I was undiagnosed (I was told I was depressed and had anxiety for months) so I was not treated, and not even doing things like compression, salt and fluid loading, etc that could have helped. Once I was correctly diagnosed and began medications and fluid loading I improved slowly over months and was able to return to work when my child was 10 months old.

That is my experience. Undoubtedly yours will be different. I have yet to meet anyone here who has experienced exactly what I did during that time. I think the fact that you are diagnosed will make a big difference as you can be treated rather than suffer unexplained and disabling symptoms for months. At the same time, it is advisable to plan on having help during the first few months, bc it is as I said, hard to predict what your energy level will be.

Regardless it is a very special time! Despite all the hardship I have many good memories of infancy and my child and I bonded--perhaps our bond is even stronger b/c we spent so much quiet time together in the early months.

Best wishes.

[masumeh]

Pregnancy is difficult on the body...it's a huge strain, takes from all your vitamins and nutrients, messes with your sleep, joints, mood, EVERYTHING! So, yeah, I think any underlying health condition can be exacerbated during pregnancy, especially something with an autoimmune component (and some POTS sufferers have autoimmune involvement).

Personally, my pregnancies are horrific on my health, mostly because of being bedridden cause muscle atrophy and weakness.

The most dangerous complication I face in pregnancy is thrombosis. During pregnancy, my liver produces too little anti-coagulant (Protein S deficiency), and I consequently suffered a blood clot in my lungs in my first trimester of my first pregnancy (after which, I knew to take blood thinner/heparin shots during pregnancy and postpartum). As long as I'm taking my heparin shots regularly (daily), I shouldn't worry too much about clotting problems. However, of course, since thrombosis could mean a fatal heart attack, disabling stroke, or another pulmonary embolism, it's worrisome anyway.

Around the time of my first missed period, I start vomiting..all day, all night, even in my so-called sleep I wake up choking on vomit...I throw up until my face bleeds around my eyes...this is called Hyperemesis Gravidarium (HG). Zofran anti-nausea medication helps but I'm still literally unable to move without throwing up. Everything makes me nauseous--the air, enclosed spaces, the neck of my t-shirt rubbing my throat, sound, smells, my hair touching my neck, light, the very thought of food. I live on IVs for the first trimester and first month of the second trimester. It is traumatic. And of course, it results in de-conditioning of my leg muscles from being effectively bedridden for several months. Additionally, the Zofran which is saving my life causes me seizures, but I have to live with that. I become extremely weak, BUT the higher cortisol natural to pregnancy helps keep my blood pressure closer to normal than usual, and so as soon as I get over the worst of the HG, I can start retraining my legs and trying to get back to myself. So there's this eye of the storm in the second trimester, in which I do faint frequently (have to be so very, very careful not to faint forward facing onto my belly). Then the third trimester hits, and the heart burn and swelling and lax joints and vascular laxity begin. It is very difficult to sleep with a big baby belly. That hurts my POTS. I get premature labor and get put back on bed rest, which again destroys my muscle tone in my legs that is supposed to aid in venus return and compensate for overly lax vascular walls.

The birth is horrendous...my daughter was a prolonged labor despite all interventions to induce...after two and a half months of premature labor, the last ten days of which I was contracting every 2 1/2 minutes around the clock, my cervix just was like a brick wall, not shortening, softening or dilating. Even with a cervical insert of chemicals to induce labor, even with IV pitocin, even with the doctor breaking my water...she had to manually dilate my cervix while I was on epidural...the baby was born 38 hours after the contractions became too difficult to speak to anybody...by vacuum delivery. This is called prolonged labor. Or ****. Take your choice.

But I have to say, my daughter was worth all that and more. She's my life.

Postpartum, I pushed myself to the brink and beyond to do for her like other, healthier mothers could. I had many fainting episodes, multiple times daily throughout her first year of life and toddler years. But she was never injured or neglected. My mother and my husband knew I had ups and downs throughout the day and would come when I called for help. We lived in an extended family household, so help was usually just a floor away. But I didn't really get much help, to be honest.

I changed 99% of her diapers, exclusively breastfed her for 6 months before starting solids (continued breastfeeding until 14 months), sang to her, rocked her, gave her tummy time, walked her to the park every day, took her to play groups, babysat my nephews her age so she had constant playmates.. And she thrived, hit every developmental benchmark early. She started talking at 10 months and reading at age 3 1/2...this summer, she turned 12 years old, finished high school algebra and is currently taking part in a special science camp for gifted children after testing in the top 1% of all nominated gifted students in the nation (we're in KSA)...she's fully bilingual (Arabic and English). She is sensitive and compassionate, well-mannered and a joy to be around. She has memorized half the Qur'an and plans to finish the remainder over the next few years. She's read hundreds of novels with passion and analytic criticism. She's artistic, good-humored, loves to surround herself with funny, adventurous friends, and is very close to her grandparents on both sides, and all her cousins.

So, I have POTS. At times, I have it bad. My mother-child journey is different than healthy mother-daughter journeys because of POTS. There were moments, when she was a toddler and just learning to speak, that she would sit near my side while I was having a seizure and say, "Mommy, don't die. I need you!" I could hear her, but I couldn't move. When she was in preschool, she was constantly worried that I would die because she wouldn't be there when I fainted...and I had to tell her, that's not her job...her job is to be a kid, and she's not responsible for me, I'm responsible for her. There was a time she didn't understand what I had, and she thought I was hiding a terminal diagnosis from her...and I had to remind her that I never told her stories about tooth fairies and Santa Claus, I never told her fiction without telling her this is imaginary, I told her she knows I would never ever lie to her, and I had to promise that if a doctor ever tells me I am dying, I would tell her, and I'm not dying, people don't die from POTS. There was a day when, after recovering for a couple years to a level of fully functioning and having no seizures or fainting episodes or plague of fatigue, I became pregnant again, and sick again, and my then eight-year-old daughter had to see me go through all those months of illness and vomiting and see me again having seizures, and again blacking out, and again unable to do anything due to no energy...and she came to me and said, "Mom, if you're going to be sick again like you were sick before, I don't want to exist." And I told her, she's stronger than that. I'm stronger than that. Our family is going to be okay. We made it through, and she was the happiest big sister, finally having someone in the world with her unique genetic makeup (part Iranian, German, American, Sudanese, Turkish, Tunisian, Egyptian)--and somebody to boss around ('cause boy, is she the boss!). Since then, I'm working on trying to do for this little boy what I once did for a little girl who is now a brilliant young lady. He is a whole other story!

So I have POTS, but my daughter is thriving. We talk about everything, how she feels, how we cope together as a family and it makes us stronger in our love for each other. She's coped with my illness through art, horseback riding, math (her passion) and having a very active social life. I've coped with my illness by focusing on her. Honestly, if I didn't have POTS, I would probably have worked full-time and put her in day care and we'd never have the incredible mother-daughter story that we are living now. And if I didn't have her, I probably wouldn't have had a reason to push myself out of bed every morning.

You say you're worried about your energy, and that's understandable. That's reasonable to calculate and consider. But motherhood is just not something that adds up in the conventional way...it'll be the energy of your heart that matters most. So, don't worry. You'll be a great mom!

[EABarnard]

Thank you so much to both of you!I appreciate what you have shared with me so so much.

[corina]

I have nothing to add other than that I hope that you will start to feel better and delivery will go smoothly. I'm sure you'll be a great mommy! You can do it! And please do not forget: nobody's perfect, healthy or not. It's the love for your child that makes all the difference!