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Getting Pregnant With Pots


sjc2378
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Hi there all! I am new to the forum, but excited to get some information from those that know best what I'm dealing with daily. My name is Sara (I'm 32 yrs) and I was diagnosed with POTS in July of 2009 up at Mayo Clinic with the TTT. My primary symptoms were fatigue, exercise intolerance, nausea, dizziness, brain fog, tachycardic episodes,blood pressure drops and headaches. I did not experience extreme syncopy, but was dizzy much of the time. Thankfully, I received a diagnosis early on in my illness and have done pretty well with treatment, once we found the right balance for me. I spent 3-4 months miserable and incapacitated until last fall they landed on the right treatment combinations. Since then, I have slowly been improving in baby steps. This summer I seemed to really turn a corner when I simulatneously started treatment for my Hasimoto's thyroiditis and began to see a rehabilative athletic trainer to get me moving and exercising again. I currently take nadolol (beta blocker), salt tablets, and use the non-medicinal strategies of high fluid/salt diet and daily exercise. Since May, I have nearly felt like my old self again; although of course having bad days here and there. These bad days just aren't as frequent anymore. I feel like I'm finally living again.

When up at Mayo Clinic for my check-up a few months ago, I discussed with my team of doctors the possibility of me getting pregnant again. My husband and I have 2 little boys, but have always wanted 3 children. Unlike most people who want more kids and just "go for it," we are concerned about the implications this could have on my long-term health because of POTS. The doctors at Mayo stated that they didn't have any concerns. They felt that my autonomic system was responding to treatment well and because my meds are all safe during pregnancy, I wouldn't even have to alter treatment. They didn't feel that I would end up worse post-partum, but that is still my biggest fear. They do not believe my illness was set off by pregnancy to begin with, but instead the result of a bad virus and my autoimmune associated with my thyroid. But I am still nervous. My OB and my endocrinologist are both monitoring me for the thyroid issues since this is another concern in pregnancy. Am I just holding onto a dream that I had pre-POTS, that I will pay for later??

So my question to all of you is, what is your experience with pregnancy and POTS? Did you feel worse during or afterwards? And if so, for how long? I've read research that says there is no direct disadvantage to being pregnant with POTS, but my luck is that I'd be the 1% that was worse. Any specific recommendations or suggestions? How about the anesthesia or epidurals? Anyone who has been through a similar situation-wanting a baby, but not sure it's worth the risk? I just don't want to be selfish and "go for" the third child, and end up not being able to parent my children at all because I'm so sick again.

Thanks for your support!

Sara

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Like so many things with POTS this truism applies--everyone is different. So it seems hard to know how to answer this question.

In my case, I didn't know I had POTS (looking back I did but it was very mild and undiagnosed) until I was finally diagnosed after a very hard pregnancy due to POTS that became so severe in the 3rd trimester that I had to stop working and was unable to return to work until my daughter was 10 months old. I also had a very difficult birth with major blood loss (the latter not directly related to POTS). I am now improved greatly, but due to this experience, chose not to attempt a 2nd pregnancy, which has been very hard for me!

From what I have observed on this site, which is by no means a scientific study, pregnancy does not appear to make symptoms permanently worse or better. Some people do well with pregnancy (in fact most do--and this has been documented by small studies) a few fare worse (like me)--in the short term. It seems that POTS, over the long haul, either improves greatly, stays about the same, or some people get worse over time--for reasons not well understood. And this also seems hard to predict, excpet that younger people seem to do better with improvement than people who develop this later in life.

I think you are being reasonable and responsible to consider the question of whether, with this condition, you could manage to parent 3 children well. Unfortunately there are some unknowns. I think you may want to also think about what your support network is. If you were to become disabled at times or over years, who could you call on to help you.

BTW I also have Hashimoto's thyroiditis and believe POTS was set off either by this or whatever set off the thyroiditis. This developed prior to my pregnancy. Thyroiditis is generally pretty easy to manage during pregnancy. Your body does very early on need more thyroid, and so your meds will need rapid adjustment.

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I have had POTS flare-ups since I was 15, and I am now 40 and just in the process of being diagnosed. My first pregnancy went pretty well until the very end when my baby began showing signs of distress and had to be delivered by emergency C-section. My second pregnancy was very hard, particularly during the last trimester. Looking back, I was in a terrible POTS crisis, but was not diagnosed - I think that with proper identification of POTS and treatment things could have gone much better, and at least I would have known what was going on. I was so sick after my second child was born that my husband had to take almost a year off work to look after us both. I have never really recovered (my son is 6), and am currently going through the worst POTS episode yet. Again, if I had access to doctors who were familiar with and could properly treat dysautonomia, things might be different.

I had always wanted a third child too but would never take the medical gamble - as it is I am currently unable to look after my two children without lots of assistance. Everyone is different, but I can't tell you how bad it feels to constantly feel like you are letting your kids down.

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Sara,

First of all welcome! Congratulations on your improvement. It must be such relief to be able to use the word "living" again! Your post was really an encouragement to me. I love to hear when people are getting some relief from this condition. Hoping to find the right combination of things for me very soon.

As far as another pregnancy I don't have a lot to add other than I can very much relate to wanting another child, but having concerns. Not giving into fear and having your dreams come true versus being realistic about the situation. I was diagnosed with POTS this past May, but I have had this for well over 8 years very mildly. It was after weaning my first child from breastfeeding did I start to notice the first symptoms of POTS. Less than three months after weaning my first I found myself pregnant with my second. I was very thin, frail and knew intuitively that I was not strong enough physically for a second pregnancy. I began having problems right away at 9 weeks and ended up losing the pregnancy at 23 weeks gestation. This is when my very mild symptoms slowly turned into full blown POTS. I like you was told it was depression from all I had gone through. I knew better! Do I think I lost the pregnancy due to POTS...absolutely NOT. My body was in a weakened state and wasn't being helped by POTS, but here is the reason I say that. I know for a fact I had POTS during my first pregnancy and it was a breeze. Most people were envious of my pregnancy. It was just the fact that I was strong and my POTS symptoms was bascially very very mild at the time.

I don't tell you this to scare you because my point is I think we all know instinctively sometimes what our bodies are capable of handling. I would say if you feel strong and healthy and it is your dream to have another child then go for it! You know what you are dealing with now, so you are already leaps and bounds ahead of where you were last time! I often look back and think if I had of know what to do to help myself earlier on I wouldn't have gotten so sick to begin with. Delay in diagnoses just continued to make me sicker.

Obviously this is just my very uneducated opinion. I honestly just hope one day I will be in your position where I can actually consider another child. I have even had my heart opened up to adoption through all of this. Who know maybe I will adopt and have another! Good luck to you and please keep up posted!

Ashley

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Welcome

I have had symptoms since I was a teen never knew what was wrong had 5 children the pregnancies always made me feel slightly better in the beginning but worse in the end and almost unbearable postpartum the last child was in 2008 and the symptoms have gotten worse with every pregnancy in my case. I'm not on any meds and have not been I have had periods of recovery and in between the 1-4 I wasn't as sick as I have been since the 5th. I guess it depends on if your willing to take the risk no-one is the same I don't know how much has been researched and compared in all of our cases I haven't been involved in a survey or research study so I don't know what the doctors base the information on.

I would imagine if you have blood volume issues and have the fluctuations that happen during and after pregnancy it would be noticeable...I think that is my problem because I got worse and worse after every child.

Honestly I wish I knew everything I know now I love my children but after the 1st I would probally have stopped because I am not the mother physically I intended being and it affects me everyday and also my children, its unfair.

I seriously think if your able to think about having another child then maybe your capable of handling it, I knew after my 4th that my body couldn't handle anything else but IT happened and I had to pray and be as strong as I could, I think about it all the time like ;What if I didn't get pregnant would I be this sick ???probally not but I love her so much but honestly I know in my heart I would not be this sick if I didn't have my children but they are my life and they have given me purpose and so much joy.

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Hi! I just gave birth in March..

My POTS was great the first two trimesters, but by the 3rd it was pretty bad. I was in bed most of the days. Postpardum was great until about 5 months, and i hate to say, its been terrible for me. However, I know a lot of women who had the exact opposite effect! good luck and i hope everything works out for you!

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Congratulations! I hope your pregnancy goes well. Hopefully the extra blood volume from pregnancy will make you fell better.

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Hi Sara,

I'm having a serious issue with my POTS now, but previously I would have flare ups about every 2 years. The year I got pregnant I didn't have a flare up and felt better than I had in the prior 9 years. I gained an excessive amount of fluid which probably helped the POTS. There were a lot of pregnant women around me at the same time and they made comments that I made pregnancy look easy. I was great until about month 8 where the fluid retention was just horrific. I couldn't put on regular shoes and had worn compression stockings for at least half of my pregnancy. I had a LONG delivery, but other than that it was a good pregnancy. I think everyone is so different. We've been holding off on having another because of flare up of POTS and gastroparesis. I'm hoping to have another baby eventually. I wish you luck with your journey. Take care.

Elizabeth :)

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